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Adrienne Dellwo

Weird Things That Cause Fibromyalgia Pain

By July 20, 2009

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People without fibromyalgia just don't get it -- and really, how could they? A lot of things about it just make no sense.

Among the bizarre, confusing aspects of this condition is the things that cause pain. People around me can understand that I wake up with stiff muscles; that even gentle pressure can cause pain in some place; and that my pain is artificially heightened by my brain. What they can't understand is the truly weird things that cause pain. Here's a list of some of my more unusual fibromyalgia-pain triggers:

  • The car turning a corner too fast
  • Vibrations
  • Loud or repetitive noises, especially high pitched ones
  • Bright or flashing lights
  • Busy patterns
  • Being startled
  • Anxiety

Those are things that shouldn't cause pain but do. It would be reasonable, for instance, if the noises or lights caused a headache. They don't -- they give me abdominal pain. We've had to make some rules at my house: noisy toys have time limits, no one is to jump out and scare me, and (most recently) my husband needs to take corners a little more slowly.

Do any of these pain triggers sound familiar? What other odd things cause you pain? Share your experience by leaving a comment below!

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Comments
July 20, 2009 at 5:17 pm
(1) Nancy A. says:

I do understand. I do have problems with bright lights or flashing lights but that would usually cause headaches for me. I can see that it might bring on GI problems if you have IBS like I do…..it’s funny….I just never really made the connection. That’s because, even though I have IBS, anxiety has never really affected my stomach much. Even when I’m nervous, I can always eat! LOL!

I’m 55 now, and just the thought of going on any kind of ride is out of the question. I’ve had CFS since 1984, and I remember early on in my illness, going on a ride. It wasn’t a big roller coaster — just one of these fast kind of rides. It was a nightmare for me! After that, I swore I’d never go on another ride again. It did seem as if my head and everything else was hurting and just unable to stand the fast movement.

I guess it all comes down to our “hypersensitivity” problem. We may have symptoms all over our bodies but I feel that we really do have a neurological disease. We need so much more research in this area to discover the underlying causes of CFS/FMS.

July 20, 2009 at 8:44 pm
(2) Shawna says:

I read about this before and I noticed it bothered my long before I was diagnosed. When I am driving or riding in a car and the sun is shining through the trees at the side of the road, flashing along with the speed of the car, I get an anxious sick feeling. I cannot tolerate it. I will pull the visor over, sit up taller in the seat, close that left or right eye, whatever necessary. I was surprised when I realized I was the only person around me that had this problem. When I read about it recently in some fibro article or another, it was a great “Ah-HA!” moment for me. I didn’t feel so crazy then.

Another thing I just recently noticed- I was in the middle of an argument with my husband. Suddenly my arm and hip started hurting ferociously, as if someone just hit me with a sledge hammer in those to spots. I started panicking, not about the fight, but about the pain! My husband backed off his tone, I took some pain pills and made myself calm down. I don’t even remember what the fight was about!

Hopefully he will avoid arguing with me because I just told him what the article above said. He shook his head and said that fibro HAS to be a neurological disorder.

July 20, 2009 at 9:29 pm
(3) Jodith says:

OMG, Shawna, I have that same problem with driving, too. Coming from SE Texas, where most of the highways are going through the Piney Woods, it was a nightmare going to my grandparents, which we did almost every weekend. I’m fine in the car the rest of the time. Driving at night is no problem. But when the sun is lower and you get those flashes of sunlight through the trees, I get sick to my stomach and dizzy and headachey, and it take hours to go away after the drive. I’d never associated it with the fibro before.

For me, the single biggest pain trigger is the weather. Any weather change, from sunny to rain or vice versa, triggers pain. The bigger the storm, the more the pain. I can often tell a weather change is coming 4 or 5 days out. People think I’m crazy until it actually happens. Times of the year when the weather changes constantly are just horrible for me. I think I need to move somewhere with the same weather all the time. If I wasn’t so heat intolerant, I’d move to the desert *laughs*.

July 21, 2009 at 3:25 am
(4) morningstar says:

External stimuli that causes body pain is called allodynia, if I recall correctly. Light, sound, odors…input from all 5 senses can cause pain. It’s not limited to fibromyalgia sufferers, though–it seems to be linked with processing disorders, neurological hypersensitivity (for example, mild autism), and CNS problems. Odors, like a dirty garbage can or cat urine, really get me. One evening, my children tried to surprise me by mopping the kitchen floor– with, I found out later, undiluted dish detergent! It dried to a strange greasy-sticky film, and when I stepped on the linoleum barefoot, I had a full-body burst of pain. I didn’t know there was a name for it until recently–until I found the name I just told my family it was like a “body migraine”, because the pain triggers are similar to my “head” migraines, and because it is intermittent–a stimulus that is extremely painful one day might not be the next. Anyone that has ever had migraines and has experienced a spike of pain through their head from light or noise can understand the feeling. Because I have found that people understand–and just as importantly, attach less stigma to–the concept of migraine headaches, I tend to view (and explain to others) allodynia as similar to migraines and also as a partner syndrome of fibro, like IBS and Reynaud’s–it can exist independently of FMS, but it often accompanies it. It helps others to understand that I am not psychotic because I go fetal-position over sticky feet.
I’m also finding that some people don’t get it no matter how carefully you try to explain it, even educated people who should. For some, the words neurological and nervous system will always equate with outdated phrases like “nervous breakdown” or overused, misunderstood words like “hypochondriac” and “neurotic.” Do I feel neurotic or like having a nervous breakdown when I’m dealing with people like that? Darn tootin I do. I spent nearly 20 years of “pushing through the pain” and trying not to show it, and only recently has my condition become so debilitating that I can’t hide it any more. I’m still grieving my own losses to this illness and wondering what comes next. Every little accomplishment is a challenge, and I am choosing to view whatever I am able to achieve as a big win for me. At the end of my day, I can be triumphant that I made it through. Facing derision and condescension from someone who doesn’t impact my life is just plain irritating. But when it’s my oldest child, my mother, or medical personell (as in, medical people I deal with when seeking treatment)–that is a loss too.
And then there are the gains. I understand WHY my 8-year-old would rather clean a litterbox than be in the same room with a running vacuum cleaner, and why my 9-year-old would rather vacuum every house in the neighborhood than smell a litterbox or cream of chicken soup. What other parents would treat as silly I see as a genuine issue for them, and we try to divide up chores in a way that work with everyone’s problem areas. Maybe I can’t do a lot of things that other parents can, but I can validate my younger children in a way that other parents can’t, and that is definitely a gain.
We did end up getting rid of the litterbox and no longer have indoor pets, as my allergies seem to increase my all-over pain. It hasn’t been very long yet but my 9-year-old (with ADHD and sensory integration issues) has had an amazing change for the better in behavior and coping skills since then. Makes me think: perhaps those people with difficulty understanding FMS/CF have an allergy of some sort that prevents their logic and empathy from functioning normally.

July 21, 2009 at 9:54 am
(5) Dawn says:

am learning lots from reading about others with Fibro/CFS, and can relate to every one of them…I have a problem that I have not seen yet..unexplained excessive sweating…like just stepping out of the shower…hair dripping wet..clothes…soaked!..anyone else out there with this problem..it has put a big damper on my lifestyle…not going out in public so much anymore..even church…which adds to my already overloaded depression.

May 8, 2011 at 9:32 pm
(6) Renee says:

I have that problem as well and my friends don’t understand…they make jokes about it.

November 11, 2011 at 11:34 am
(7) phyllis says:

I have the sweating issues also and serious heat in my body, my skin can be cold as ice but inside me feels like a wood burning stove is going full throttle. at work they think what is wrong with her! I stay home when not at work any thing I do I sweat profucely.

November 20, 2011 at 4:13 pm
(8) irene says:

i have had fibro now five years the sweating like nobodys business and dripping on the floor and at th sam time ic cold frozen was so pissd off trying to comfort myself. so I tricked my body got in a staming hot shower and drank icce cold water or anything ic freezing cold just slammed it and then my body would adjust and things would sttl down for a while. that is th only way i figurd out for now to survive this maddness. What i bn hqavving problms with since day one is the fling of being stung by a gazillion bees in my glands all ovr my body when I ha a flar up or when I get a massage. the bee posin maks me sickliterly sick and I can fl it bing pushd out . i know sounds crazy but it is not i fl it and I know it has got to be true so how nd I know othrs with fibro hav this too. if you do lt me know at legel134@msn.com

July 21, 2009 at 1:18 pm
(9) Caroline says:

Dawn-
I have had the same problem getting out of the shower; taking a shower is EXHAUSTING, and I also am sweating right out of the shower. When washing my hair, sometimes I cry because my arms hurt so much from being lifted up washing my hair…excruciatingly painful…it’s the same pain as lactic acid build up in muscles when you do reps while lifting weights, but you’re just washing your hair…
I recently (3 months ago) had vitamin D levels checked…it was 20 ug/ML, considered a vitamin d deficiency….have been taking high doses of vitamin D3 (cholecalciferol)…rechecked last week….now at 80ug/ML, I am more tolerant of the heat and my arms do not hurt hearly as much when I wash my hair….also had a sleep study…have mild sleep apnea…sleep with CPAP…am feeling a little better I think…possibly combo of Vitamin D blood level up and getting better sleep, but no where near normal…
Mayo Clinic has done research on connection between Chronic Pain and Low Vitamin D/vitamin D deficiencies…Google Mayo Clinic Vitamin D Chronic Pain…
Good resource for info on Vitamin D/Chronic Pain is http://www.vitamindcouncil.org

March 30, 2011 at 8:49 am
(10) lorna says:

gosh, so many people have this. iv always felt like i was lazy a lazy person if you know what i mean. some of my earliest memories are of mum shouting me to turn off my alarm clock. yet just that was such a struggle for me. when i was 14 i went for jaw therapy as it tightens and stiffens, no explanation given. going to work was such a heavy task for me and i always wondered how other people coped so well when i always felt like i just couldn’t do it. i have to bath and getting out and dried and dressed is such hard work. the slightest bit of sunshine and my eyes cower away. and each change of weather condition brings more pain. if my son pokes me to play or leans on me it hurts so much. anything that needs to be done with arms raised is so hard and tiering i could go on and on. i was only diagnosed 3 years ago, im now 44

July 25, 2011 at 9:12 pm
(11) Karen says:

Thank God for this forum! I sometimes feel like I must be crazy for feeling some of the things I feel, but apparently I’m not! I, too, feel like taking a shower is a job in itself – I have to have a fan on me while I try to dry my hair or I’d never get anywhere! I will definitely check into the Vitamin D deficiency info… thanks for sharing it!

{{gentle hugs}} =o)

July 21, 2009 at 1:24 pm
(12) Sandy says:

I agree reading about others with same diagnosis is very helpful as when I do not have one of their symptoms I feel blessed. I used to go through the sweat attacks and almost pass out. I would immediately start gulping water so I would not dehydrate. I do not know if this will help you but I was put on pilocarpine and it helps hydrate the system as majority of medication side effects is sweating. Living in WI we have excessive wind at times and I have found out not to go out when this occurs as our body trying to fight the wind is like hammers to our whole system and causes a relapse. Arthritis magazine has been a big help to me especially when they did article on medications, dosages and side effects. My doctor was under prescribing. I took article to him and he upped dosages on pilocarpine 5 mg to 1.5 or 1 1/2 pills four times a day. Last year I was able to walk almost daily and developed blood blisters all over my arms which proved to be a side effect from Cymbalta and sensitivity to sun which I again pointed out to my doctor as he had told me to come back when they were 5x worse and he would run blood work (another painful experience)so now I do in-house walking exercises or better yet dance around when they have dance programs on as then you do not realize you are keeping flexibility. I also have a glider but have to be very careful as I have pins in hip so if I twist body wrong way I have done more harm than good. We have to play all kinds of games in order to keep everything moving.

July 21, 2009 at 8:58 pm
(13) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Dawn,

Are you on medication that raises norepinephrine? Excessive sweating can be a sign that your norepinephrine is too high, so if you are on an antidepressant you should talk to your doctor about it.

It also could be part of the temperature sensitivity that a lot of us with these conditions have.

July 24, 2009 at 3:35 pm
(14) Claire says:

Although this pain trigger only lasted about a year (and I hope never comes back), I would get intensely shocking pain if someone told me about an injury in the spot of the injury. It got so I could not watch the news and I had to stop people if they were about to tell me about a pain. That has been the weirdest trigger–sympathy pain–I’ve ever felt. And the pain was different too… like an electrical current running right to the spot.

August 12, 2011 at 5:55 pm
(15) may green says:

I get exactly the same feeling,if someone retells a pain experience I feel the same,word by word.I have panic attacks,memory fogginess and moments of despair when I think that the pain will never go away.So mystery surruonds the disease.Oriosity though, taking a paracetamol tablet gives a very long-lasting relief, much more than its supposed time span.I o suffer from dysmennorrhea too;extremely painful periods.Fibromyalgia seemed to have come on after a very stressful time in my life,this seems to be one of its triggers, I`ve been told.

July 24, 2009 at 3:50 pm
(16) Sylvia Shiell says:

OMG! I thought I was the only person that had these symptoms!

I haven’t seen one trigger though, when I fly out of my time zone and then get home, the pain will last for weeks. A ten day visit from BC to Ontario takes 6 weeks to recuperate.

Thanks, everyone, for telling your symptoms. We are NOT crazy.

July 24, 2009 at 4:26 pm
(17) Bonnie W says:

Sometimes I can’t wear my ring or watch. Gloves are torture devices to my fingers. Lately I have been hyper-sensitive to temperature – lukewarm water seems almost scalding to me. I have a spot on my wrist that if brushed ever-so-lightly will send a very sharp, zinging pain across the top of my hand – very strange!

July 24, 2009 at 4:40 pm
(18) Bonnie W says:

Just finished reading through the other comments about sweating – with only the slightest exertion I sweat buckets – my hair looks like I just got out of the shower. Sweat drips off my head. I’m very conscious about how yucky I must look – it’s very embarrassing.
I also have problems going shopping. Having to hold my arms up and look thru a rack of clothes is torture! After about a minute, my shoulders and upper arms feel like lead weights and I have to stop and rest them. This also happens in the shower when I wash my hair.

July 24, 2009 at 4:42 pm
(19) Mandi says:

I too have the sweating. I get out of the shower, towel off and can get just as wet as I was standing under the shower head. It’s a huge effort to take a shower or bath. I seem not to have the energy although I force myself through it. When I used to be able to walk for miles I wouldn’t sweat while walking but as soon as I would come inside and sit the sweat would pour off me. I can’t walk like that anymore. I get upset and very disoriented going to Costco or malls. It’s the lights buzzing and the background noise but what sets off mydisorientation and pain the most and I’m embarrassed to say this because I am not prejudiced, is certain cultures and their way of talking. Higher pitched voices jabbering and talking all at once in groups can leave me stranded in my car after I’ve rushed out of the store to seek comfort. When I need to pick something up I have to make an effort to go to aisles where I am pretty much alone. This really takes an effort and by the time I am home I feel I have been on a marathon for days. Phones ringing also make me sick to my tummy. I have quite a long list.

May 24, 2011 at 8:19 am
(20) Trish says:

Lord have mercy… I am pretty much bed bound. and stay in my home… I am on valium for the extreme anxiety… its just horrible..
I use to be a vibrant lady.. and now stuck on 2 heating pads for disk disease and fibro on top of it… plus full blown menoapause… and diabetes…

I try so hard to have a positive attitude.. but there are days when I am a total crab… and just cry half the day..

Im only 53… and been dealing with pain for 7 yrs… Im bout at my ends rope… if it werent for my faith.. i dont think I would still be here..

You become a loner with this disease… if ya call it that..
pain is just overwhelming… I take at least 2 hot baths a day.. and take tramadol for pain.. doesnt help much.. so… guess Im in the same boat..

blessings dear. :)

July 24, 2009 at 4:48 pm
(21) Karen Twardowski says:

Fans drive me crazy, I can not tolerate the noise of any fan, so I die in the heat. The sweating I also have experienced. Wake up at night sweating like a pig, and my underarm sweat has been horrible the last few months. I do get overwhelmed by a lot of noise also.

July 24, 2009 at 5:06 pm
(22) Martha says:

Absolutely repetative noises causes problems. I never even considered it a symptom of Fibro. As a mother of 5 and grandmother of 23 I have been suffering from fibromyalgia for over 40 yrs long before it became the latest thing. Smells trigger all kinds of pain especially someone wearing perfurme. I had to retire from an enjoyaable job. Thanks for all your info.

July 24, 2009 at 5:06 pm
(23) Linda says:

I have the same problem with taking a bath, it is exhausting and when I get out the sweating is awful. I am not sure yet but it seems as if applying base or foundation and face powder makes it worse.I sweat when trying on clothes or standing in post office queue and meeting and greeting people. It is very embarrasing.Looking at clothing on racks in shops is excruciating as is putting clothing away in closet.Another trigger for me is the “buzz” of conversation in restaurants and public places.

July 24, 2009 at 5:21 pm
(24) Ellen says:

It is comforting to read that others have these odd symptoms. My husband bought a new ironing board cover and it was reversible. He does his ironing and most of mine due to my fibro. Last week I did iron a blouse and got very dizzy and sick to my stomach. I really the horizontal stripes on the cover were the culprit. Luckily the cover was reversible to a plain light blue and when he changed it to that side, I was ok. Any bedspreads that have stripes on them or carpeting with a busy pattern also makes me feel dizzy and ill.

July 24, 2009 at 5:58 pm
(25) jody says:

Iwas laying in bed reading this and feeling so alone and depressed and now thanks to all of you I feel better. I have the sweats,the light and noise issues and the vit d deficent issues along with many others. Diagnosed with CFS,Fibro,chronic pain and more in the last year and now I am trying to accept the fact that I can’t keep working.At least someone understands our pain,it would be nice if all could finally accept that we are really ill.Thanks for sharing!

July 24, 2009 at 6:27 pm
(26) Andrea says:

I can relate to almost EVERYTHING that everyone has said !
Just getting a shower has become quite a chore! I also suffer with terrible arm pain while trying to wash my hair. Most people would think that’s CRAZY…..I’m glad to know that I’m not the only one.
Noises and smells, and lights (sunlight) flashing through the trees, I never really realized that ALL of those were caused by the Fibro . It has become worse for me over the years. I also developed allergies after 30 years of an allergy free life ! I KNOW that it ties in with my FMS/CFS. I wish that the ” normal” people COULD understand these things….Oh one more symptom, sitting with my arms(elbows) on my knees has become so painful that I always end up with a pillow on my lap to comfort my elbows ! And the list GOES ON, and on……and on !!!!

July 24, 2009 at 7:03 pm
(27) Sandy Birkenmaier says:

I had a new experience today. We have an addition built onto our house, that is four steps lower than the rest of the house. Since the addition is used mainly for storage, the door at the top of the steps stays closed. My husband opened the door this afternoon and started down the stairs, with me right behind him. As the heat that had built up right outside the door hit me, it felt like someone had hit me across the forehead with a board. I let out a yell and fell backwards which, of course, startled him, and made him nearly fall. The older I get, the less well I tolerate both heat and cold.

July 24, 2009 at 7:32 pm
(28) Irene says:

I get a sickish feeling when I am looking at to many things at one time—example looking thru the dvds at Walmart just scrambles my brain and then I get a sickish feeling. Try explaining that one to anyone who doesn’t suffer from this illness.

July 25, 2011 at 9:39 pm
(29) Beth says:

I have this as well whenever I go to ANY store — My wonderful doctor suggested that I wear sunglasses when I shop and it does help. I guess it cuts down on the brightness and sensory overload. I am also very aware of the time and try not to shop for over 30 minutes!

July 24, 2009 at 7:33 pm
(30) Valetudinarian says:

Want to hear something funny? My PCP recently redecorated his office. The new carpet pattern and modern shiny moulding never fail to give me an ocular migraine at the very least!!!

I have noise sensitivity, could never stand that crowd noise on TV during sporting events (could be selective, I admit, lol).

How can I be hot AND cold at the same time???My legs are cold and the rest of my body are hot, so I often sit in the airconditioning with a blanket on my lap.

Certain smells immediately make me sick, especially old car auto exhaust smell.

Flashing lights cause me to become disoriented, whether it is sunlight through the trees, street lights passing in cars, etc. If the kids play with certain toys, I could possibly go insane if the toys did not “disappear”!

Rainy days bring on some pain, but also provide relief! How can that be? Sometimes the bright sunlight hurts and I am more relaxed on rainy days. Go figure!

Showering has become better, but I also used to sweat getting out of the shower, too. I take lukewarm showers. My arms would ache after washing my hair. I look at less showers as my personal water conservation project!!!

I used to sweat more when I was taking a T4/T3 supplement due to the T4, I believe. I was not on an SNRI, but have experienced the “extra” sweating from previous Wellbutrin use. We cut out the T4 (like synthroid) and now I just take T3 (like cytomel).

Funny thing about sweating….I NEVER used to sweat much when I was younger (and was able to run 5K’s)!!! Now, if I am exerting myself I am a fountain.

I have a weird pain, among other “normal” abdominal pain”: The top of my hip bones hurt (not my joint) and I have found no one else that has this problem nor any glimpse from the medical community as to what it is.

Here is a joke on me. My little son found some men’s cologne. He sprayed my desk where the computer is to smell “handsome for you, Mom”! It makes me nauseous! I can’t get rid of the “manly” smell on my desk!!! Help!!!

I am not too fond of being touched, especially when nauseous! The other day, my daughter was sick and I was stroking her with sympathy. She said, “Mom, please stop moving your hand on my skin!” Broke my heart because I knew how she was feeling!

I find I can no longer watch stressful movies or read grisely books (violent or slasher films and Patricia Cromwell-like books). In fact, I do not enjoy reading much due to the physical position I must be in to read–causes discomfort.

There is definitely a grief factor with CFS/FM/ME. I have grieved so many things and changes in the direction of my life due to my CFS. Before I was dxd, I went through a period of thinking that I was just a low energy person and would never be like others that “completed their daily lists”. I envied others that always “liked to stay busy”. I liked to stay busy, too, but couldn’t! What was wrong with me? I then thought there was something wrong with me personally or had an undiagnosed psychiatric disorder. It was a complete vascillation of thoughts that ignorant doctors fulfilled. I was just a fat, dumb, lazy, crazy, unworthy person that was deemed to have no will power or discipline!!!

NOW, I KNOW that is not true! BUT, I have missed several years of my life with misdiagnosis. While my personal life is pretty good, forget about having a satisfying OR an unsatisfying career!!!!! Even my personal life has to be kept to a minimum, especially with activities. It is difficult to interact on the phone and email only while maintaining meaningful relationships. People want to DO things with their friends!!!

I STILL miss out on things. For example, I had a severe crash on 4th of July holiday! My husband had a picnic in our backyard, went ahead with our planned guests and set off fireworks with the kids while I was in bed because I could barely move and beyond exhausted!!

I am trying to stay optimistic. It is VERY irrittaing that I find I must know more and DO know more about CFS/ME/FM than most medical personel!

Do you think we could be bestowed an honorary doctorate degree by some university for learning so much about our condition????

May 14, 2011 at 7:38 am
(31) Sleepless in Carlsbad says:

Valetudinarian,
It seems that our experiences mirror each other in many ways. I hope you are finding help with dealing with your grief. I have recently found someone in Carlsbad, CA who is excellent. In addition to a miriad of different pains, I also have a great deal of pain at the top of my hop bones. I thought that one was unique to me! I’ve had fibromyalgia since I turned 30, now am 47, and have been going through a particularly bad stretch these past 3.5 years. I have to keep hope that this too shall subside at some point.

July 24, 2009 at 7:36 pm
(32) Sue says:

Wow-all of the above bother me, too, and bad. A sudden noise, especially loud or startling, gives me a sharp pain in my chest, and, this might sound weird, in both my arms, especially, in the inner bend of the elbows. It actually hurts. In public restrooms, I have to close my ears when flushing those loud toilets. The vertigo feeling one gets while stopped at a red light, etc, and a car slowly moves next to you while you’re still stopped, causes a dizzy, uncomfortable feeling. I could go on and on.It’s comforting to know others have similar experiences. Busy patterns are awful, especially red print on a blue background, and dots or circles; they make me nauseous.

July 24, 2009 at 8:07 pm
(33) James P Harrington says:

how do i start this 15 and a half ago ripe age of 42 my knees would give out every morning when i got out of bed i went to my dr and it started tylona 3 and naproxen well that lead to a left knee replacement and i was told chronic pain i have seen all kind of rx medicine had every x-ray man has invented last month at my pain managment dr. i had talked to him about this website and how great it is now i have been seeing him for the chronic pain that i have always been told i have well it seem that now i have fibromyalgia which i have found out in this website can happen i read in the viewer comments how some had i hard time finding a dr. to understand their condiction (spelling ify at times) i felt secure in that my dr. was great knew my problems and with rx’s and nerve burns i had control over my chronic pain and then talking with him about this website and how i identified with so many of the same hurts pains misunderstandings that i have with family and friends about what i go though at times to have him say”yes that what you have” really sat me back at times you think you have all the right answers or know that you are doing the right things and then your world changes right in front of you and it makes everyting you read about makes sense my dad told me once read as much you can about what every it is and realize only you can take all that out of your mind he never finished school ww2 as i said i have been living this hell change happens for over 15 yrs a nurse asked me once how do i do this with all the rx’s and hurts and pains she was amazed i told her no one ever asked me that no one ever asked me why i do this i would be lost without this website thank you everyone

July 24, 2009 at 11:24 pm
(34) Marcella says:

Pushing the vacuum cleaner. For some unfathomable reason it hurts to vacuum. We have seven rooms downstairs, and four upstairs. It takes me four to five days to vacuum them all because of the pain, and yet I can go out and work in the garden, watering, dead-heading, trimming back shrubs and cutting back perennials, do all these jobs in the same day with only mild pain that goes away when I take an Epson Salt bath. Weird.

July 25, 2009 at 2:25 pm
(35) elana s. says:

interesting insights. i do have chronic abdominal pain, and due to my low income i’ve been in very noisy environments most of my life. i’m super sensitive. interesting post in thatit closely relates to what i go thru daily. i live on a busy highway and there are flashing lights in my bedroom all night. my walls and floors vibrate, and the trucks and motorcycles startle me awake. my neighbor snuck up behind me yesterday, i screamed, and he said, “what the hell is wrong with you” in restaurants and grocery stores, people blindly walk very fast while looking at their blackberry and frequently walk into me, or race into me with their carts. this society sure isn’t conducive to us

July 25, 2009 at 4:16 pm
(36) Jill says:

I can relate to alot of these Fibro issues. Jodith, don’t move to the desert! I live here and it is the worst for my Fibro! The weather changes all the time. I have never remembered living anywhere that has such a extreme variation in weather. Much less the heat! I wish more people understood our symptoms.

July 25, 2009 at 4:38 pm
(37) Jill says:

WOW, the sweating when you get out of the shower! I have had that forever and never related it to my Fibro – just figured it was wierd me! Makes me feel better knowing I’m not the only one.

Does anyone else have a problem with not being hungry – ever? I have to force myself to eat – especially in the mornings. It’s bad because I am hypoglycemic and know that I need food.

July 25, 2009 at 4:49 pm
(38) Dawn says:

I can’t believe that there were others that had the same symptoms with the heavy sweating…my social life had gone down so much because of that and lots other stuff I read from my fibro friends here…the bright lights…noise..chemical smells…one thing I did not want to do was stop going to church…some of the men and women bath in their perfumes and aftershave…one little whiff and I get an instant headache and sick to my stomach…I don’t bother with makeup anymore cuz it sweats right off in a very short time…I used to enjoy shopping…not anymore…the traffic, noise, people, bright lights, and the embarrassing sweating when you go into a store and your hair is dripping wet and clothes are wet ….little kids running around makes me nervous…their high pitch voices sets me off into a panic mode…it is horrible!..and the least little bit of stress increases my forever pain from a 10+ to beyond no end…I feel like I have a raging virus living inside of me ..and the only thing doctors know is to give you drugs..and no answers…gentle hugs…Dawn

July 25, 2009 at 7:19 pm
(39) mandi says:

I’m having a foggy day. I know I saw Dr. Clay McCord respond here. I’m not looking for the book I desperately need to get in touch with the man. Let me put this out there for all of you. Can somebody help me? I can’t figure out how to send a private email to Adrienne Delwo. I am fighting a court battle and the opposing attorneys are saying that fibromyalgia is “some unkown and ill defined medical problem.” Would anybody like to respond to help me out. I suffer from it. It seems I’m trying to prove its existence in a court of law.

July 25, 2009 at 8:51 pm
(40) k says:

Going to the grocery store always leaves me with a headache. I dont know why this is. Getting in and out of the car also causes hip and back pain. Does anyone have any thoughts about why going to the grocery causes headaches?

July 25, 2009 at 9:45 pm
(41) mandi says:

I can’t go to the grocery store. I find going to Costco easier because the aisles are wider and I can usually find one to escape in. I can’t do the aisles that are close with so darned many things on shelves with their bright colors trying to attract our attention. I get dizzy and confused, especially if I wear sunglasses rather than my regular glasses. I get confused with so many things on the shelves. At Costco they are still sitting in boxes making barriers and nothing is piled up as tightly as a grocery store. Grocery stores have sounds that bother me more. I seem to get confused visually. I don’t do well in department stores that have everything crammed together. I don’t do well driving around a busy area.

July 26, 2009 at 12:04 am
(42) janet says:

I was just feeling so sick today and sweating excessively and read this. I am sorry for all of you experiencing this but glad I am not alone. I was trying to hang wash yesterday and the pain in my upper arms were horrible. I can’t sleep and take Anbien and also have sleep apnea. I cannot stand the sun on the side of the parkway flashing through the trees. I get so dizzy. Cetains smells make me sick. I could go on and on

July 28, 2009 at 8:21 pm
(43) Penny Richardson says:

Has any one experienced pain in the neck, jaw area? I have been sick with CFID’s and Fibro. since 1991 and this is a new symptom. Feels as if I am on fire. Thank-you to all of you and I do have extreme empathy. I was a nurse prior to falling ill. In all my years of nursing I have never come across such strange symptoms.

July 29, 2009 at 7:12 pm
(44) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

Penny,

Two possibilities come to mind:

1-TMJ is a really common overlapping condition in us. I have it, and it can be incredibly painful. Here’s more: TMJ & Fibromyalgia/ME/CFS

2-Myofascial trigger points in the SCM. I also have these, and they can cause pain in the neck, jaw, ear, head and sinuses. Here’s an article on chronic myofascial pain: Fibromyalgia & Myofascial Pain Syndrome

Also, here’s a picture of common SCM trigger point locations. The Xs are TrPs and the red is the radiating pain pattern: Common SCM Trigger Points

July 30, 2009 at 8:27 am
(45) Heather says:

Someone mentioned kids… It’s something I never thought about. I kept telling myself I have no mothering instinct. I don’t want to be left to care for anyone’s children. It causes me a lot of stress, because if the children aren’t well-behaved, then I feel mentally/emotionally overloaded and I kind of “freeze.”

I am 29 and have thought of getting tubes tied because I just can’t imagine a day when I’d want to have children of my own. I couldn’t meet the demands of being a parent. I don’t enjoy being around children and now I think I understand — it’s not because I’m a bad person or anything… it’s because when they make noise, run around, or throw tantrums, it downright exhausts me. It really sets me on edge. A screaming child at a grocery store, even if they’re across the store… it makes me feel tired. The sound is like a knife to my ears, skull. I feel like such a cranky person, but I get upset with parents who allow their children to scream or run around. It’s not cute. It makes me want to leave the store because I feel the energy drain of too much stimuli!

July 24, 2011 at 1:49 am
(46) michelle says:

Honestly, its tough having kids when you don’t feel well. I remember what it was like before I got sick and now. I feel badly for my children. Talk with your doctor before you do anything permant, but I can’t say I don’t blame you.

July 30, 2009 at 8:36 am
(47) Marsha G. says:

Thank you Thank you Thankyou. I have had a very severe cass of fibro for at least 5 years. To Dawn, Caroline, Sandy, Mandy and others, you have eased my mind about the dripping severe sweating. Also, the exhaustion of taking a shower. I have a rheumatologist, Endocrinologist, Pain Mgt. Dr. and NOT ONE of them could figure out why I sweat so seriously. Talk about embarrassment, I have been in the supermarket twice when people called EMS (not to my knowledge) because the sweat was pouring off me and my face was very red) They thought I was having a heart attack. Image you get a tap on the shoulder(which hurt) by an EMS person asking if you are OK. You folks have helped me so much with your listing of the same symptoms especially the weather. There is a new med for Fibro called Sevella. I just started it. I also have rheumatoid arthritis so it is a double whammy. But as all of you know we do the best we can to function normally(when we can). G-D Bless all of you for sharing and helping others.

August 7, 2009 at 4:05 pm
(48) Jean says:

I take neurontin for my fibro/nerve pain and it causes a type of vertigo, like the dizziness many of you speak of when seeing stripes, etc. It is in the same class of drugs as Lyrica which is supposed to help fibro but had even worse side effects for me. I don’t take any anti-depressants but do have the horrible sweats, all the time. My husband has to sleep in another room because I have to keep my room so cold.
One weird thing I’ve never seen mentioned is that often times, I will feel as if something is biting me or stinging me. Other times, I feel as if someone has poured gasoline on my leg or feet. They burn very badly. I do have a compressed nerve root in my spine so some of the burning can be from that I’m told but what feels like stings aren’t supposedly from that. We certainly do lead complicated lives. I feel envious of those of you who say your husbands do things for you. Mine has been quite ill but even before, he’s just not the helping type. I guess we feel blessed for what we do have and I have a zest for life so I take joy in that. Good luck to all.

August 8, 2009 at 10:03 pm
(49) weeroo says:

Sweating – wow, I thought it was hot flashes! But I see now it could be drugs or fibro. So awful, I get claustrophobic and panicy and want to run away when it starts, odd reaction to sweating! It must be a temperature regulation thing in the brain. And why oh why just after a shower, I really never heard that before and am glad I am not crazy because it has been happeing to me for years.

Shower, besides the flushing just after, showers also tire me. I have a great water filter on the whole house so it is not chlorine or anything. Of course I flush on and off all day too. Flushed when not taking anitdepressants so that is not it. Just had cortisone shots and the flushing was constant all day and nite for almost a week! Adreniline? too much cortisol? Sure would like to get rid of it, the pain I can treat and live with, this I can’t do anything about!

Weather – like Festus on gunsmoke my knees can tell you when it is going to rain! And any front coming through is exrememly painful. Florida gets tropical waves and hurricanes in the summer and then lots of fronts roll through all winter.

Cold, oh yeah, right after the flushing! Makes no sense! My feet are always cold and I wrap my feet and legs in wool blankets when resting even in 90 degree weather.

So glad for my sense of humor and imagination. Keeps me going.

August 9, 2009 at 8:21 pm
(50) Lea says:

Hi everyone, it’s comforting to know that I am not the only one. I have had visual sensitivity since I can remember, even at a very young age in school, we had a school dance with strobe lights and I just couldn’t handle it. It seems that now when my body get’s into pain like this it is followed if not minutes, hours, or days by a migraine. Driving has always been hard for me, day and night. The light through the trees, and the headlights at night. I am 23 and was diagnosed at 15. I am really having a hard time with getting used to smells triggering pain lately. Suddenly onions and chemicals make my body hurt or sick to my stomach. And the sweating issue I suddenly got last year. It feels like when I hit 20 everything changed. Suddenly all these new symptoms. What has always bothered me the most though is the feeling of being un-rested. I feel bad that I am becoming crabby all the time but I always feel sleepy. Alright, enough of me complaining. Thank you for this post though, it made me feel better, thought I was alone.

August 21, 2009 at 7:13 pm
(51) C. Nell says:

I realte to all the comments above. How do we stay as sane as we do. The pain,fear, anxiety, flushing, sweating, triggers depression.I am at my wits end most of the time. Of course if you don’t have it, you certainly can’t explain it. Suggestions from anyone w/over 20 years of fibro are so very welcome.

September 5, 2009 at 8:58 pm
(52) Kirstin says:

I can’t relate to any of the excessive sweating, I actually don’t sweat enough. Living in the desert, it is a blessing and a curse. I can walk out of the house without having sweat stains all over my clothing, but it makes it difficult to do any sort of physical activity, because my body overheats.

Something that really bothers me is driving. Being a passenger doesn’t bother me, it is actually relaxing. But being the driver, my energy is drained so fast, I find myself exhausted and falling asleep after only 5 or 10 minutes.

September 11, 2009 at 10:20 am
(53) Cheryl Robinson-Atwood says:

I’m just now understanding that I’ve been living with fibro for many years. Many, if not most, of the symptoms described here hit home! The post-shower sweats, the intolerance of flickering light, crowded stores, odors, and movement, the stinging pains, “body migraines”-all toooo familar!

I was only diagnosed with fibro two weeks ago, and am now on Savella. It’s helping-but, d/t an ER trip for what turned out to be costochondritis (not the first time, and thankfully, NOT an acute MI), I had a cardiac stress test scheduled for today. Had to reschedule, as I’m having a wicked fibro flare. So, back to bed for me. Thank you, thank you one and all for taking the time and trouble to describe what you’ve been through. It helps the rest of us to know we really aren’t “crazy” or hypochondriacs!!

November 18, 2009 at 9:26 am
(54) Rebecca 0rchard says:

Hey. Im really ill, im dizzy and lightheaded. I have pains underneathe my arms, and waist. and I have a belly ache. Please can you help me.
Thank you :) xx

January 22, 2010 at 11:42 am
(55) Jennifer says:

It is so nice to finally know I am not alone. I was just diagnosed after suffering for 10 years. My main issues are in my back. I also suffer from TMJ, Myofasial pain, IBS, and severe SI joint pain. I have so much pain I cannot even carry a small book. I can only stand or walk for about 3 minutes before needing to sit, but I can’t sit too long or my back hurts. Often the slightest touch on my legs send a stabbing pain in my back. Lately I have noticed when i type too fast or too long my ear drums throb Also, bright lights cause stabbing back pain.–I never thought that could be part of my FMS! Unfortuately I am a teacher in a 3story building, and my classroom is on the 3rd floor. (Could it be any worse?)

I have suffered from severe depression from all the pain. The worst part for me is being only 33 and having a 4 and 7 year old that I can’t play with anymore…

It makes me feel so much better to know there are others who are out there too.

February 24, 2010 at 11:16 pm
(56) Elyse says:

Fibro sounds like central pain syndrome CPS, a condition I have..Its rather like waking you up half alien. After all, who would believe that sound, temperature, emotions cause physical pain. It hard to get those around you to make simple changes, such as not slamming car door closed, because they really cant understand.

BOTH DISORDERS BITE….

February 25, 2010 at 10:49 am
(57) Misti P says:

I have been diagnosed with FM for 2 years but have suffered for 15 years or more before being diagnosed.
I am now 41 and my pain is getting so severe I am taking 6-10 pain pills a day just to be able to work.
When I wake up I am in severe pain and have to take 2 vicodan and lay there for at least 30 mins before I get up.
I am on anti-depressant, hi blood pressure meds, diabetic meds, vidamen d, hi colesteral meds, and prilosec for stomach pain. I feel like im much older than I am. I dont know what to do now. How am I going to continue to work? Im so stressed it just makes me hurt worse.
I have thought of suicide but cannot bring myself to do it.
HELP!!!!!

March 18, 2010 at 2:34 am
(58) MsVee says:

I was diagnosed in 1998 by a lung specialist as I was having trouble with periods of coughing so hard and long I would lose my breath, there was a constant wheezing in my chest and I didn’t even smoke – nor did my husband. I wasn’t certain what it was but I was immediately sent to a pain management physician and have been seeing him on a monthly basis ever since. I suffer from sweats at night, in the morning, in the shower (which completely wipes me out afterwards) and numerous other problems including depression, migraines, restless legs, always tired and never participate in social activities anymore. I was working at an extremely stressful job which began in 1989 and my health just declined over the years and no one believed any thing was wrong with me. It was all in my head according to co-workers. It’s become so bad I am no longer able to work and I feel like a recluse having to make my schedule around the way I feel at the time. Nothing can be planned, I can no longer keep my home the way I have always kept it and the stairs are an absolute nightmare. I am scheduled to get a total knee replacement in a couple of months which is also a result of Fibromyalgia. I was only 40 when I was diagnosed and to look at me now, 12 years later I look as if I am in my late 60′s and feel more like 90. I don’t know if this is genetic, but my 22 year old daughter has been having migraines, IBS, menstrual problems and is going for a sleep study for Restless Less Syndrome. I am on a regimen of medication and some exercise but it just keeps me able to go on until the next day but I don’t think this will ever go away. It’s affected every aspect of my life and my familie’s lives and I pray if not a cure, then something that will provide relief without all of the side effects not only physically but emotionally as well. Good luck everyone, you will be in my prayers.

April 6, 2010 at 5:51 pm
(59) Liz says:

I can relate! I have had FMS for 3 yrs, diagnosed for 2. I thought the sweating after the shower and at other times were b/c of the meds, but we are not all on the same stuff. I am amazed that I can be hot and cold at the same time…sweaty will chills…so weird! The light doesn’t bother me so much, but when people talk to me too loudly near my right ear, I am in pain. I so wish there was a cure! I was a super active person…taught middle school math for 6 yrs and have 3 kids..19,10, and 3. The birth of my last child triggered the fibro. and I haven’t, and probably won’t be able to go back to work. I hope and pray that you all find comfort and relief and all we can do is be our own best advocate and tackle each day as it comes!

April 21, 2010 at 12:22 pm
(60) Urs says:

Having been diagnosed almost 5 years back with Fibromyalgia I have learned that most complaints I had seen a doctor with a directly linked to my FM. Flashing lights make me pass out (faint). Loud music or noise does the same… I haven’t been in a club for years! Any Anxiety / shock/ scare makes my muscles tense and ache. The way I see it is, that overstimulation to any of the senses or anything is not good for people with Fibromyalgia. But I am glad to know that others feel the same and even happier that I can show this to my boyfriend and reasure him it’s not HIS driving what making me sick. Take care.

April 25, 2010 at 1:09 pm
(61) jackie says:

i have suffered for 4 years with fibromyalgia.i am so depressed and the pain is endless. my legs are the worse they just give way with pain without any warning, and my upper arms are so sensitive,i am53 years of age,I often have to go out with someone due to the chronic pain i am in.So maybe one day there will be a magic pill we can take , i live in hope .

May 20, 2010 at 12:36 pm
(62) terry says:

I don’t encourage joint replacement as a first resort, having that knee replaced has given me chronic pain in my back. It started about 10 days after the surgery and I have suffered daily for over three years. (At the same time I developed the overwhelming super-smell that some have written about here, soaps, perfumes, cooking smells etc. That should have been an early warning that something neurological was going on with me.)
Don’t see the surgeon first…see the rheumatologist and try every injectable treatment you can before consenting to joint replacement.
My first knee surgery was when I was 17, I am now 56 and have been completely disabled since knee replacement surgery. I had to quit working, my husband does the shopping, laundry, house and yard work I used to do.
Two years after the surgery I fought with my GP who thought I was crazy or trying to get drugs. X-rays were ordered and guess what? All my lumbar spine is curved away from my surgical leg due to all the compensation for the other leg. So now there is an x-ray that proves I’m not a hypochondriac or insane. I suffered daily for TWO years before the GP would order the x-rays and refer me to the rheumatologist. I lost two years of my life to constant excruciating pain.
I have been told I might have CRPS, or RSD, now I have a fibro diagnosis but I do not have the trigger points that characterize fibro.
As part of a team care approach I have to see a psychiatrist, a psychotherapist and at physical therapy I am called “The Repeat Offender”.
It’s my position that one should have a thorough psych work-up before undergoing joint replacement. The surgeon knew that I was being treated for depression and PTSD after the death of my mother, but elected to perform the invasive surgery anyway. A perfect recipe for CRPS or RSD. I was in way too much pain afterward, in the hospital they treated me as a problem patient…morphine had no effect, it wasn’t until I got an injection of Tordal (sp?) that the pain remitted enough for me to go home.
I have been on every kind of pain killer, I have permanent damage to my esophagus from NSAIDS, I needed another corrective surgery on the knee replacement, I got a shoulder injury from the crutches after that one…my story could go on and on.
Doctors are learning as they go with these types of conditions.
I have been on anti-depressants that felt like I had taken LSD. My doses have gone up and down as they tinker with my symptoms. Am I depressed about this??? Of course, my quality of life was definitely NOT improved with joint replacement. Like a domino effect that surgery has caused so many other problems. It is very possible that if I had waited until a year after my mother died psychologically I might have been a better surgical candidate. Please please don’t assume surgery will make things better. For me it has been the complete opposite.
I have lost most of my friends because I don’t socialize like I used to, some people have said way too much to me about being crazy, some have not said a word, just stopped calling…one a best friend since 5th grade!
If only I would just go to the gym I would be better…at least the psych understands that if I felt better I would get to the gym. Meanwhile I have just started Savella and I find it much more helpful than all the others I have tried. I also get cortisone in my back every three months.
I would gladly go back and keep working with my arthritic knee instead of having all this as a result of being too hasty and believing that joint replacement would improve the quality of my life.
So my advice is think carefully and get second even third opinions before having joint replacement.
I hear for many people it is great but it depends very much on what your psychological situation is when you have it.
It’s very hard to remain hopeful living like this, but I have a wonderful husband, a strong son and a companionable cat…don’t know how I would have managed without them. Keep all the options open, don’t settle for one doctor’s opinion. This has cost me years of my life and most of my friends. I hope by writing this I can help someone avoid the problems I have.
Take care of yourselves!

July 25, 2010 at 10:53 am
(63) melanie says:

There are so many comments, I havent time, or patience to read them all. I want to know if anyone else w/fibromyalgia experiences having the chills alot.? I do, and sweat excessively. Also, lately, I have been very irritated by just everything, and everyone. My meds do somewhat control the pain. But, all the other symptoms are so affecting my life. I never dreamed…Sometimes, I get sick to my stomach. And, when I vomit, it feels like electrical shocks all through my arms, and chest. Is that part of the syptoms? Is there a total list of symptoms?

August 11, 2010 at 11:58 pm
(64) Adrienne Dellwo says:

Melanie,

Chills, excessive sweat, electric shocks and irritability are all very common in us. The stomach problems and vomiting, however, are not. You may have a separate problem, or it could be a side effect of meds, so definitely talk to your doctor about it.

You can see a full symptom list here: The Monster List of Fibromyalgia Symptoms.

~Adrienne

September 28, 2010 at 2:39 am
(65) Michael M. says:

I am absolutely amazed at what I just read. You are 100% right that people without FM just dont get it. The “weird” things that you listed are incredible. I’ve actually tried to explain to my wife and others that when my daughter and youngest son scream with joy that it causes me physical pain. Sometimes I get an understanding look and sometimes I get the “yeah OK” look. Also the being startled issue can result in a lot of muscle pain when the adrenaline subsides. I feel like I’ve been shocked into pain. Thank you so much for your article. I will be printing this out, showing it to family, friends, and my not so understanding MD. Thank you again.

Sincerely

Michael M.

October 15, 2010 at 1:24 am
(66) samantha says:

i am 23 years old and was just diagnosed with fibromyalgia. the littlest things make me crazy and i seem to never get enough sleep, mostly because i toss and turn for hours before passing out to the tv. sometimes the ringing in my ears is so loud i cant hear barely anything. i am still trying to understand this disease, and with a huge sensitivity to medications, i am trying to take a more holistic approach to symptom relief. any advise. oh, and speaking of wierd symptoms, does anyone get a crushing pain in their fingers, like they were smashed in a door? what can i do to releive this pain? it is probably the most irritating symptom out of everything. please guide me in the right direction to relief!!!

January 29, 2011 at 12:55 pm
(67) Stephanie says:

I have lived with pain for a long period of time. I thought it was normal to hurt until speaking to some friends. I can’t even understand how others don’t hurt. At times it feels as if my neck and left shoulder are broken. My head feels heavy and the inflammation gets so bad you can feel it through my skin. I have gained a lot of weight because I just can’t get around anymore. I am only 39 and feel useless. From head to toes I ache and recently started drinking wine to help, it helps a bit, and that is better than nothing. I’ve tried stretching, diet, meditation, medicine, basically, you name it. I keep an electric blanket on my bed all year so I can wrap myself up trying to relieve pain. I guess I just needed to vent. lol Does anyone elses hair get a greasy feeling even after showering? Everytime I get this “greasy” hair, I have an attack that rocks my world. Any advice? Thanks.

January 30, 2011 at 8:41 pm
(68) Debra Ford says:

After almost 10 years of living with terrible pain that me nor my Dr. could figure out, but he thought was shingles, I think I have an answer. I have strange, severe headaches with odd places on my head and body that were so tender to the touch that I did not want to be touched by anyone. I have never been a head ache sufferer ever in my life. I had such pain through my back and torso area that It is painful to even wear a bra. I could not figure if it was my muscle, my nerve endings or my bones, I just knew I hurt. One strange thing that makes it worse is if I drink Soda or sweet tea which I love. It makes the headaches and pain through my back so much worse. Does any one else experience this? My doctor looks at me like I’m crazy. Whats so sad all these years I’ve suffered my doctor did not have a clue. My dear friend who is an RN figured it out. I now have found a Dr. who is a specialist.

February 14, 2011 at 12:17 am
(69) Deborah says:

The pain I had today was really not fun – I believe the
changing of the seasons with the barometric pressure
so high that it brought it on. I felt nausea and when the pain left it left :)

Sleeping on a hotel hard hotel mattress shot my bod in high pain! We got an egg crate – one not enough – two tonight – praying for a “no Pain” nite!

The Indiana Jones ride at Disneyland gave my body such a jolt that my bod was in pain the rest of the day – no more rides after that :(

Definitely notice pain when our schedule is hectic

Sometimes there is no rhyme or reason for the pain!

March 26, 2011 at 7:14 pm
(70) Anne says:

I am 75 years old and have had Fibro for 18 years, I can relate to all of these comments posted. I have Diabetes, several heart surgery’s,stroke, two knees that need replacing (because of heart, can’t be done), I use a walker. I also have torn rotator cuffs in both shoulders, Osteoarthritis. The pain is almost unbearable from more than Fibro. I have been on Lycra b but it didn’t help and side effects were weight gain, etc. So am trying to get off of it and am having with drawl signs and am struggling.
My theory for the sweating, is it is my body fighting the pain, I sweat a lot and taking a shower is a nightmare.
If any one knows how to limit this pain, I sure would like to know. I too have thought of suicide, but because of my belief in God, I just can’t do it, but have sure come close.
I thought the older I got, perhaps it would go away, but if anything it seems worse.

November 28, 2011 at 11:17 pm
(71) ashley says:

Anne,
I’m sorry to hear about the pain that you are in. I know that I am a few months late, but I hope that you have found some relief. God bless

April 14, 2011 at 9:04 pm
(72) Mariza says:

The ticker tape headlines on CNN or other news channels just make me go loopy!!! One time I walked through a new Walmart (I’m guessing the new construction material and cheap Chinese manufactured products) and nearly passed out. I felt it was a mixture of the smells and high intensity flourescent lighting that made me feel nauseous and faint.
Oh! and I live in Costa Rica, and whenever I go to San Jose, which has high air pollution from old buses everywhere, I want to throw up, my eyes dry out and itch, and I get rhinitis, and awful fatigue. I try to not go very often. Kinda sad for this young woman of 35 years of age, who probably has lived with this curse since childhood. well, at least I’m accompanied on this fibromyalgia shipwreck!!

July 26, 2011 at 4:45 am
(73) Samantha UK says:

Hi, I noticed that most of you are in the US.
Well I can vouch for the fact that the weather does have a big effect on my pain. Like one of you said you can forecast the weather 4-5 days ahead, me too!
& it can leave me unable to function properly. As the weather in the UK is so variable I pretty much have this on a daily basis, I might be having a good day and then I can say to my partner the weather is going to change as I am in so much pain and unable to leave the house!

December 18, 2011 at 3:32 am
(74) Kathy says:

Hey There! So many things cause me pain , horrible pain . These things are so weird. 1. the sound or feel of styrofoam.2.if there are too many blankets on the bed, my legs spasm so badly I cry. 3.when more than one dog barks my entire body hurts. 4.HUGS……. they hurt the most but, please keep `em comin!

December 19, 2011 at 11:39 pm
(75) melissa says:

I am 39 yrs old and can relate to all these comments. I was just diagnosed with Fibro about 6mos ago. I use to be able to do for others but now i have to have someone help me do everything for myself. I have had to get rid of my pets and change my whole lifestyle. I lost my job over a yr ago and the depression set in then. Friends and family dont understand how bad the pain is. I once had the highest tolerated for pain now I spend most of my time in bed. It takes all I have to shower or to even just walk to my couch from my bed. I got divorced because of this as well. He always said I was always complaining about hurting and he never would like if I went to the doctor. I cant even finish taking care of remodels in my house cause the pain unbearable. I sweat so bad it makes me miserable and I stay sick on the stomache.

December 19, 2011 at 11:51 pm
(76) melissa says:

Hugs are so unpleasant when they shouldnt be. I hate and cringe if anyone wants to get next to me. Anxiety is the worst along wth pain attacks, going in public is embarrassing. If I want to shop or try to buy groceries I will have my neighbor drive me to another town so no one will know who I am. I hate to run into someone who knows how I once was and how I am now. I am glad to know I am not alone. Right now I am in soo much pain, and I live alone , that I just feel like I am going to die. Meds I am sorry just dont work. I am not one who wants to depend on stronge meds and become addictive to them. I pray one day some finds something that will truly work. I am glad there are others who really understand how bad this is. Good Luck everyone.

December 25, 2011 at 12:58 am
(77) Lucy says:

I was reading above and empathizing with so many of you :/ I have lupus, but the pain and never ending”ness” of it goes right along with everything stated in these posts. Something caught my eye about excessive sweating and I thought I would throw in some helpful information. Since my 11 year old daughter was born, she has been a SWEAT’er!!!!! Dripped from head to toe even when it was ice cold! It would run off the top of her hands and feet when she was 6 months old….I had never seen anything like it!!! We were told by several dermatologists that she would grow out of it. It being a condition finally diagnosed as “hyper-hydrosis.” She was able to finally receive attention when we were referred to Vanderbilt Children’s hospital, dermatology clinic. On a not so positive not however, the treatments for it all get a thumbs down from Mom! There is a gel you can rub onto your hands and after so many uses it clogs the pores and helps prevent the sweating. Downside…main ingredient, aluminum. Aluminum in linked to Alzheimers and Alzheimer’s runs rampid in our family anyway. There is a pill they can prescribe that completely stops sweating. Well, if you get hot and NEED to sweat, you are going to have heat stroke/exhaustion, so she wasn’t going to be able to participate in gym, recess, outside with friends, etc. Then there is Botox. Then there is the extreme!!!!!! Cutting the nerve that causes her hands, feet, and armpits to sweat. The “embarrassing” spots. =O What to do!!! I think until she is old enough to make a decision, I will help her deal with it with over the counter products, self-esteem and good hygeine!! The alternatives are scary!! Hope this helped some of you!

December 29, 2011 at 11:26 am
(78) Cristian says:

To all you folks sufering from Fibro (me too), Please start by helping your selves with a change of diet, drinks, and get some nice excercise (nothing strenuos), you will find these things will help emmensely. Also, don’t take on too much, pace yourself, and remember it is OK to say No to things. Do the things that bring you pure joy. Stop caffeine of all kinds, no sugar and no white flour products, you can make this chage, you will survive, and you will feel so much better. Eat good food, fruit, veggies, lean meat and whole grains, eggs…..I have been using myself as a Guiny Pig, and when I eat, drink, and take good care of myself my pain diminishes…when I go back to bad habits…I pay dearly with pain. 2012 will be only good living, also added b12 and magnesium. Please be kind to your body by eliminating fluoride as well. Your body and pain will thank you. Go Pure…No sugar, No caffeine, No alcohol, No chocolate…No Junk Period. Just Real food ….God gave us good stuff to keep us healthy. Man made stuff is killing us. Eat a Mediterranean Diet, keep a positive mind set, enjoy yourself, and Make God the Center of your life. Be Blessed. If you follow this, I know you will do better. I am proof.

January 11, 2012 at 5:10 pm
(79) W.Gaines says:

Well I thought me the only one to have all this pain I feel like I have been run over by a big mack truck. i don’t want to shower it hurts, to comb my hair just to get out of bed, don’t want to fix meals I just want to cry because it is just not right to hurt,feel like this everyday.and to have people say you don’t look like you hurt..this is not easy to have pain none stop or they say you don’t walk like you hurt.How is a person with savere pain suppose to act, when it is a chore to raise your body off the bed.I would not want this for nobody because the pain is awful.Be Blessed

February 3, 2012 at 12:51 am
(80) Angela says:

Wow! The sweating thing?! Never in my life have I made the connection between that & Fibro but…I am definitely a big ‘sweater’! That makes me sound like the article of clothing. Ha. When I blow dry my hair, I have to do it in my cold basement with a fan on me & I’m still sweating even then. I’ve been this way for years! Huh…who knew?! Glad it’s not just me. And, in the summer? Forget it; I *HATE* the Summer because I sweat even more & it’s disgusting. Ugh. What a great site I’ve stumbled on. Thank you! :)

February 20, 2012 at 1:19 am
(81) Leonia says:

I was just diagnosed with fobro a few day ago and as it is frustrating to me at least I know all the pain is not in my head, I had a brain tumor remove may 16th 2011 and they found it due to headaches, they have not went away and I am just curious if anyone has any advice for me as to how I should change daily habit to help myself, i have been told no white sugar and to walk some everyday and other suggestions would be greatly apreciated

March 15, 2012 at 5:50 pm
(82) HW says:

Leonia: I was diagnosed with a constant chronic headache when I was fourteen. This is NOT the same thing as migraines. The pain does not subside at any time for me. It never has, and I am now 26. Because the cause is unknown and so far untreatable I have had to learn how to deal with the pain. If your headaches have no apparent physiological cause and are not helped with meds, you must live with the pain. That is not easy.

What I recommend, if you haven’t already tried it, is pain management therapy and biofeedback. Before I did that at age sixteen I would be awake for up to 50 hours at a time because the pain kept me from sleeping. It is the ONLY thing that has made me able to live a somewhat normal life, though I still can not drive or work full time.
Also, watch out for the extreme depression that comes with chronic pain.

As for the original interest in this thread “what strange things cause pain?”:
I have always had unusual nerve pains in different parts of my body (weird stuff, like from elbow to fingertip) from these sounds:
- high pitched noises (I can hear dog whistles)
- almost any metallic sound such as keys or coins
- crinkling paper (especially cellophane)
- microwaves beeping
- car horns and unlocking beeps
- ballasts on strong lights
- P.A. systems
and also from
- reading
- bright lights
- scratchy materials
- geometric patterns with small details
- being touched lightly (a firm touch is fine)
- being startled

Although not diagnosed, several doctors have suggested that I have fibromyalgia. I can’t help but sympathize with everyone here. Best wishes to all of you.

April 3, 2012 at 8:44 pm
(83) dedrea says:

l can’t even go for a ride in a vehicle any more.i use to go shopping in a town just 60 miles away now i can’t hardly walk once i get out.work causes me a lot pain as well.people don’t understand unless they have it.

April 26, 2012 at 5:05 am
(84) Emily says:

Hi im so glad to know im not the only one in awful pain everyday.I thank all of you for your wonderful commentd. I was first diagnoised backback in 2003 I was staying with a friend and she had a beautiful antique couch covered in pladtic where I would sleep and one night she came into her living room and found me crying she asked me what was wrong and I told her that the plastic from the couch was hurting my entire body. I love to hug but it hurts so darn bad. I hurt down to my my toes. Thankyou for allowing me to share my pain. I to live the Lord with my whole Heart and that is what keeps me going because he said by his stripes I am healed. I Believe God. Phillipians4:13 God Bless you all.

April 29, 2012 at 5:02 pm
(85) Laura says:

Well first off the hot/cold/sweating has been a challenge. Sometimes I get so cold for no reason down to the bone. Just can’t warm up. Other times, I feel so hot I can’t stand it. The sweating has been an issue too. But I’ve experienced a new trigger these past few weeks. Driving certain cars. Don’t understand it. I have driven our Windstar and Civic for years and I’ve driven other cars occasionally. I have never had an adverse reaction. Test driving certain cars these past two weeks has triggered pains so bad I have to stop for the day and start all over another day. Thought it was All wheel drive vehicles and vehicles that autimatically pop into 4 wheel drive. First car I drove was 4 wheel drive that you manually go from regular to 4 wheel drive, no problem. Drove a new model of the same vehicle and had a trigger. Front wheel drive seems to be ok. I don’t understand what the exact trigger is though because I drove a 2004 Explorer (Eddie Bauer Edition) with no problem. Drove a 2008 Ford Explorer a week later and it was. I’m so done! How frustrating not to be able to get the vehicle that fits all of my family’s needs because driving it causes me pain.

May 2, 2012 at 3:37 pm
(86) S swelteer says:

I agree, odd things can be painful. I first noticed it at a Robert Plant concert that had strobe lights. I had to leave and wait in the outer halls for the person I went with. There are tunnels on I-10 in Seattle that have lights evenly spaced in the darkness, and I HATED to drive through them. Tried to figure out what lane might be better, but it was awful. My husband’s quick turns gave me many a headache. He coudn’t seem to remember to go easy. I once shouted “Be quiet!” at a family/ friends gathering when the noise of chatter flipped the pain switch.

May 17, 2012 at 8:37 pm
(87) Jodi says:

I ahve a problem with repetitive noises. They cause my back to spasm if they go on for more than a few seconds. I get back and leg spasms more than anything. I am not usually one for complaining, but my mom was doing some sewng while I was using her computer and I had to leave the room until she finished because the noise from the sewing machine was making my back adn legs spasm so bad I couldn’t think and could barely move!
Taking corners too fast or driving on a dirt road causes my lower back and upper legs to spasm severely. And I mean VERY SEVERE. My mom took a corner kind of quickly because of on-coming traffic and I was almost crying just after she did because it hurt so damn bad!!

May 24, 2012 at 6:28 pm
(88) Jodie says:

I have had fibromyalgia for years. My mother has it as well. I am also a cancer survivor. I have been going about my life just thinking I had to live with all this pain, fatigue and depression. I didn’t want to think about it and if I complained about being in pain or not being able to stick to an exercise routine or a healthy diet I was called lazy and I thought maybe I was. I came to this page today because even though I found something that helps relieve all my symptoms weird things trigger me so I have to take into account while I am learning to help myself. Yesterday (I live in Las Vegas) I got dehydrated while running errands and my friend I was with drives erratically scaring me a jostling me about and my pain came on like crazy. I never really paid attention to my triggers before. I know from doing research that Fibromyalgia patients, people with migraines/headaches and people with IBS all have low Serotonin. Low Dopamine as well for FMS. I hate taking medication since I have watched my mother suffer ever more so because of the side effects from her meds but when you are in so much pain it’s hard not to take things that can at least make it less so. I try and get massages they help and I try and keep hydrated and eat healthy. I had horrible cravings though that made it hard so did my mother. I take supplements but until I started taking Laminine in December nothing made me feel better. The first day I felt my focus return and my fatigue leave me. Then I noticed my muscled relaxed quite a bit, then my headaches and cravings went away. I no longer felt hopeless and depressed. I still have some pain and every once in a while I have flair ups but I can manage them much better. It has been a God send for me. You have to buy it online from referral but the nice thing is if it doesn’t work for you they will give you a refund. I ran out of it and things went back to normal. I will never be with out it again. You can go to eggoflife.com/kjneeley.

May 24, 2012 at 6:29 pm
(89) Jodie says:

I was reading your stories and my heart goes out to you. It is so nice to know you are not the only one. My life is so much better now I can’t believe it but I still have my trigger points flair up now and again. I am 90 % better then I was and am able to do work I couldn’t to for a long while and getting my life back. I am sure there are other things out there that will help as well. Let’s keep sharing and caring. :0)

June 2, 2012 at 2:46 pm
(90) Helen pudge says:

Does any one have neck and muscle spasms almost constantly I am in so much pain they cause migraine headaches 3 days out of 7 my dr gives me 2 weeks supply of diazepam I have a life for 2 weeks then back to the circle of spasms and pain and headaches I am in the uk I am 47 been living with this for 25 years … Don,t think i can or want to carry on for much longer like this I take 75 mg of dosulepin at night along with 0.5 mg of clonazepam . I also have osteoarthritis which makes exercise very difficult… Gave up work due to pain. Have trigger point injections in my neck and shoulders every 3 months sometimes they help. Sometimes they don,t. Can’t drive as I can’t turn my neck right properly plus tablets make me drowsy I just feel like I am existing not living….

June 9, 2012 at 12:48 pm
(91) J. Beck says:

Wow, finally a connection. While driving in the car we would pass through areas with trees that would cause the light to start flickering and flashin I would begin to get nauseated and if it went on to long for say a mile or so I would begin to have pain. I never thought about my sickness (fibro) being connected to the pain I would feel in my jaws, sides of my head, neck, and shoulders. I have for many years taken to reading while being a passenger in the car to avoid having to look at the scenery as it swooshes by.

June 20, 2012 at 4:20 pm
(92) Elie says:

I know exactly what your talking about. I have a few different triggers. It is just a pain that does not subside no matter what you try. Unless your on Narcotics or doing some drugs or something the pain is not eased. I am 23 and was diagnosed 2 years ago with this. It is a long road, for people like us with this. There is hope though, they have awareness walks and such and now implanting small chips that send eletrical signals to points. I just hope they get more of this figured out. This type of chronic pain, no one should ever have to live with. I hope everyone takes care of themselves and try to stay well.

July 24, 2012 at 8:03 am
(93) Linda says:

i so understand what many of you face every DAY. If a perfume person tries to spray me, I want to smack her, and thats a good day. I have had to failed back surgeries that brought this on fewl blown. Mind you I have had this for many years but it seems as the years go by, it gets worse. I’m flying to the states next month, anxious for first grandbabys birthday, but dread the pain that might come with it. I’m in bed alot these days, just unable to deal with t he pain and STRESS. They say, less stress…how? i blow out my back, my mother dies, my husband has a seizure, in the hosp., but yet, i’m to deal with it. I go to couseling, which helps till the next visit…my GP is caring but doesn’t know what to do. I wack out on many drugs used, as in shave my head,,,,,Where do I go? How do I try and function? Some days, I hate to open my eyes to another day of hell…….

July 24, 2012 at 11:13 am
(94) Sally says:

Over tha past few months I have noticed there are things that bother me that never did before. The one I can remember right now is itchy skin. it feels like the itch is under the skin and any amount of scratching only irritates it more. No one at work knew I had fibro, not even my GP. I was fortunate that my pain was controlled by otc medication and supplements. Now that I am retired, I am letting my GP know about my symptoms, but he doesn’t seem to understand or care. Maybe because he is not trained in Fm symptoms. My chiropractor diagnosed me about 15 years ago, but I have really been on my own as far as treatment goes.

July 24, 2012 at 2:58 pm
(95) Samie Noonan says:

The pitch of a persons voice can drive me up a wall and since I hurt all the time that is one of the things that enhance the pain. Crowds, sometimes I am fine other times I just have to leave where I am at. The turning cornors fast has not gotton me. And you are 100% correct when you say it is the weird things that in no way can most people understand can cause even a flare. I don”t even say anything anymore, people say “you look great, how are you feeling” I just answer fine thank you for asking.

July 25, 2012 at 12:41 am
(96) Melissa says:

OMG! I am so glad to have run into this site! So many things described here are so familiar to me! Like the light sensativity thing, my husband and son pick on me because I ALWAYS use the visor in the car, even on cloudy or overcast days. Recently I have had issues with vertigo. Don’t know if this is related to my fibro but it takes 2 -3 days to recover from it. Does anyone else have such pain sleeping at night that it wakes you up and where your body laid on the bed/pillow it is such excrutiating pain? It’s almost like those spots are “asleep” but without the tingly pins and needles when blood flow starts.Plus, the areas over my kidneys ache frequently. I sat here and cried reading all these posts because now I don’t feel like a freak or a lazy person. Thank you to all of you for sharing here.

July 25, 2012 at 9:28 pm
(97) patti says:

Probably not too weird, but any stress causes me bad pain very quickly.

August 11, 2012 at 3:15 am
(98) Kim says:

For me, it’s the sound of barking dogs that bring on pain, usually in my back and joints.
This fibromyalgia continues to baffle me every day. It also baffles my doctor, as he just does not know what to do with me! lol!
The only thing I can do, is to keep putting one foot in front of the other and do my best to maintain my sense of humor. My sense of humor is the one thing that keeps me sane throughout this process!
My late Grandmother used to say: “If you can laugh at it, you can live with it!” I keep that in mind every minute of every day when I hurt so much that I could just cry sometimes! Even as I write this, my back is killing me and my meds, I accidently left at home tonight before leaving for work! Oiy Vey!!!!!

August 15, 2012 at 12:18 am
(99) Alana says:

The vacuum, leaf blowers, or loud cars (engines or mufflers) absolutely kill my head and my neck/shoulder muscles. I can’t tolerate any loud “droning” or “roaring” sounds at all.

August 16, 2012 at 3:41 pm
(100) Lu Newman says:

For those of you who suffer with TMJ , here is some info that may help..my husband does not have Fibro (it’s’ me)but he did have TMJ..his jaw got to the point where he could barely chew..he felt the jaw was swollen, and it sort of clicked when he chewed…In the meantime, I suffered from these “brain seizures” as I called them, for around 15 years, for as long as I have had Fibro..none of the mds could figure out what the problem was..I would have these horrible brain spasms just as I was drifting off to sleep. They would keep me up all night, or practically throw me off the bed..depending on the intensity…Very scary! To make a long story short, I discovered I had a bad reaction to gluten..the more pasta I ate at dinner, the more intense the seizure was..I’m not sure what could have possibly screwed my brain chemistry up so badly, but I had just gotten off anti depressants when this and the fibro both started. Needless to say I am now on a gluten free diet..I can’t even eat alot of the other flours such as rice, or I will get mild symptoms..So back to my husbands TMJ, because I gave up the gluten, he also cut way back on it and lo and behold, his TMJ symptoms totally disappeared..Apparently, he also has an extreme sensitivity to gluten…For anyone who suffers from some unresolved health issues, try looking at the possibility of an allergen. Wheat, dairy, soy, etc are main culprits, but we can be allergic to anything..Just avoid these foods for a week or 2 and see if there is any relief..BTW..gluten free has done nothing for the fibro pain. I truly wish it could be so simple.

August 31, 2012 at 4:23 am
(101) yvonne says:

I’ve been suffering with fibro for 12 yrs. My fibro got worse in 2004 after under going 2 surgeries not related to fibro. I have the whole gammet of issues. Sweats, hip pains, muscle pains, pains deep in my bones, spinal pains, muscle spasms, every type of headache, electrical pains radiating in legs arms hands feet,, problems with my intestines, sacrolitis of the joints and my stomach swells like im 9 months pregnant. I’m sure I’ve forgotten something. But now my problem is finding a doctor here in Tucson to continue my pain medications. This is the worse thing that can happen to us as fibro patients, being denied proper care.
Maybe calling the ADA and reporting to them that we are being denied care may help. At this point I’m home bound and very sick most days. When I lived in Las Vegas I had a wonderful doctor.

Pray I find someone soon! I’m at the end of my rope.

August 31, 2012 at 8:49 am
(102) gum advocate says:

Gum!, gum has been my best friend. My migraines have almost stopped- except when the barometric pressure changes. They used to be weekly. Apparently my jaw was the source. Try it!
I want to know if anyone’s ankles, knees or wrists just stop working sometimes- there seems to be nothing to link it to- and it is completely inconsistent. Stairs have become frightening- I am afraid my knee or ankle will just misfire. Sometimes it is accompanied with pain- other times not- it is so random it amazes me. This is a new fun symptom. My doctor gave me what was described as advil in a cream form- said it was part of the fibro- patted me on the head and sent me home. I am wondering if I shouldn’t be pushing the issue. Anyone else experiencing this craziness? Thank you all for sharing everything here! It is so important to all of us.

November 3, 2012 at 11:11 pm
(103) Miko says:

I can’t believe all these comments I’m reading… So many days I honestly believe I’m insane! Getting this “disease” “disorder” whatever, after a lifetime of mental illness, really can make you wonder if you’ve finally just snapped.

My family and friends honestly think I’m addicted to drugs and making things up for pain medication. Having done drugs in the past, I don’t blame them,, but it’s so hard to say things you KNOW sound ridiculous when you have to explain how you feel. I want to cry when they give me that look, like I’m making it all up…

I’m 22 and I have a laundry list. Bright lights cause me no end of pain. Any type of sunlight feels like it’s stabbing into my head like an icepick. Flourescents are evil. In high school I wore prescription sunglasses to school, that’s how sensitive I am to them. I purposefully avoid applying for jobs with white floors and flouro’s because I know I would have to quit. Instead I get to work in a dimly lit restaurant on my feet all day while my whole body screams in pain. I trade one pain for the other.

Someone mentioned washing their hair. I can’t even fix my hair for work without triggering one or both of my elbows. So it’s great that I work on a business that requires an out-of-the-face updo everyday.

Wind. I won’t even go out on windy days.

Sudden stops in the car. My boyfriend brakes hard and it always jolts me and starts the back pain.

Oh, I could go on for days. I try my best to cope, but I’m young and, after working on my body for years, thin and pretty. Now it has turned on me. I feel like my life is already over…

December 16, 2012 at 1:55 am
(104) Kathy says:

I have lived fairly well up until my mum died in 2010 and 9mths later I fell over and dislocated and broke my right shoulder. Then everything started to go down hill…I was 50. I’ve levied with these symptoms that you’ve all described and no one has dx me. In Australia, I think we are way behind medically on some things. My doc says to come back and back but I don’t get anywhere. I thought it was menopause, but that doesn’t cause the light sensitivity or the inability to lift a can of coke or cup of tea. The washing of my hair….I hear that one loud and clear, the muscles in my arms (both arms not just the broken one) is horrific. My husband thinks I’m a lazy bones because I just run outta puff and can’t do things. Sometimes I get a Burt’s of energy but it doesn’t last long and I can not complete the task. I am so glad I’m not alone and that I’m not really lazy, it just hurts too much. I thought it was all in my head, which it is to a point I suppose being that it’s nerve controlled, but I’m not imagining it. I also have an eye disease called Fuchs and my eyes are blurry most of the time and when I’m stressed it’s so much worse, along with the pain. The weather here is always changing and the humidity is horrible, I can tell when the weather is about to change.
Thank you all for puting up these posts, I know I am not alone and I now know what it is.

April 2, 2013 at 8:35 am
(105) Analyee says:

I sympathize with everyone here, especially with sounds as I try to sleep. If they’re loud, they cause me all over body pain. Like I was riding in a boat and it jarred me awake as it crashes against the shore or a rock or a tree (y’all who fish in lakes know what I’m saying) good news is lately I think I am rewinding the fibro clock. There is this stuff that I really think you guys might want to try. Now it takes awhile and you will probably have herxheimer reactions, but it’s an enzyme called serrapeptase. The theory is that this is a autoimmune disorder and obviously our bodies produce too much fibrin because it thinks its protecting itself. Well, it’s not, it’s actually locking in biofilms, heavy metals, etc, and this mycoplasma is able to procreate this way. Take serrapeptase to break down the fibrin which chokes off muscles oxygen supply, creates ischemia, and then an hour later zap the bad guys with a natural antibiotic that doesn’t kill the good bacteria. (we need them to win the war.) an antibiotic like garlic, ( because it removes heavy metals too,) maybe broken cell wall chlorella, boron….you’ll have to research which ones best for you, (and make sure to alternate, to make sure it doesnt get too used to any specific one)….this is the best success I’ve hard thus far, and most positive reports from so many places of vast reductions in pain. Serrapeptase has been used and prescribed in Europe and Asia with success for thirty years! They have the patent on it, not us. America is behind since our doctors make more money prescribing the latest “prescribed” drug. Hardly a way a health system should work, but they won’t even prescribe opiates for patients who truly need them now ( hardly, unless you’re dying,) because they don’t make enough off them and all they worry about is being sued! ) and since fibro patients aren’t dying, we only feel like it, it seems they run from us like the plague! I hope I have helped someone. Love and light, Analyee

July 1, 2013 at 4:44 pm
(106) khanam says:

Hi, I have lived with this disease of Fibromyalgia for ages finally after using food grade H2O2 and 20 mule borax powder thanks to almighty Allah ,I am pain free.I prayed to Almighty Allah a lot and finally He answered my prayers.

August 9, 2013 at 10:59 pm
(107) homepage says:

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February 22, 2014 at 1:35 am
(108) Camille says:

I have CFS, FMS, and RSDS. I have had the most awful headache this past several days and just figured out it was caused by rinsing my hair in very cold water, more cold then usual. any cold on my skin causes severe cold that lasts for days sometimes.
Any noise that does not stop, beats, is high pitched, or bass is unbearable. White noise is ok, rain, showers, low fans is ok, but not directly on my skin . Phone music, store music (unless i like it) is awful. Sun is too bright for my eyes and burns my skin immediately. I know the more sleep I get, which is hard with central nervous system conditions makes me feel better because it increases the good hormones.
Salmon oil and red pepper helps with inflamation.

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