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Adrienne Dellwo

Fibromyalgia Pain: Allodynia

By May 8, 2014

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Blog Classic: September 7, 2009

This type of fibromyalgia pain is extremely common in us, but it's one of the harder ones for other people to understand. That's because, by definition, things that cause allodynia shouldn't hurt.

That's right -- allodynia is "pain from stimulus that usually doesn't cause pain." Examples: flashing lights, repetitive sounds, visual "chaos," confusion. How do those cause pain? I don't know, but trust me: they do. And I'm not talking headaches, like you might expect from light and sound. For me, these things cause pain to rip through my abdomen. I know, it's weird.

Allodynia comes in several forms, and those of us with fibromyalgia can have any combination of them. The examples above are the basic form. There's also:

  • Tactile allodynia. Pain from touch/light pressure, such as from a waistband or bra strap.
  • Mechanical allodynia. Pain from motion across the skin, such as light massage or the brush of fabric.
  • Thermal allodynia. Pain from heat or cold that's not severe enough to damage tissues. I.e., cold feet may feel intense, sharp pain.

Allodynia's not terribly well researched or understood. Some drugs are clinically shown to help, as are some pain creams. See the allodynia section in 7 Types of Fibromyalgia Pain for more information on treatment options.

Do you have allodynia? What causes that odd pain in you? Have you found anything that helps? Share your experience by leaving a comment below!

Learn more or join the conversation!


Suggested Reading:

Photo &copy Hans Neleman/Getty Images

September 7, 2009 at 11:31 am
(1) Nancy A. says:

My body is sensitive to pain all over. I definitely have the sensitivity to light and sounds and am a migraine sufferer. I have that problem under control with Topamax. I need to wear clothes a little on the loose side. I wear jeans and pants but only the elastic waistband type, and even those I’ll make sure the size is slightly larger than I really need. Another thing I’ll never wear is turtleneck sweaters. I have asthma, so maybe that’s part of it, but it’s also the feeling of anything “tight” around my neck that’s so uncomfortable for me.

And now another subject. Right now, I’m in the middle of a horrible hot flash. I turn on my little desk fan only when I need it, and this is one of those times. I don’t think it’s just my imagination. I know hot flashes are very common in woman my age (56), but I think it just seems so much worse for someone like myself with CFS/fibromyalgia. And I hope this misery ends sometime soon, since the hot flashes happen all the time!

September 7, 2009 at 11:48 am
(2) Nancy A. says:

Another thing I forgot to mention is that I hate seatbelts. Luckily, now that I’m not working anymore, I don’t have to drive every day like I used to. I’m sure a lot of fibro sufferers will agree with me on this issue. And you don’t have to have fibro to agree about seatbelts. They are so uncomfortable!

September 9, 2009 at 12:23 pm
(3) Marcia says:

Sorry Nancy, but you can probably expect the hot flashes to continue for QUITE a while! It depends, of course, on each individual, but for my family–4 of us girls and my Mom, this just doesn’t stop. My Mom passed away recently at a couple months from being 102 yrs old and she STILL had hot flashes!! I have one sister and myself who have them the worst, but we have found that a combination hormone cream rubbed on our wrists twice a day, TRULY does help.
Oh, and 2 of us, myself being one, have fibro as well. As if fibro isn’t enough……!!!!!

September 9, 2009 at 6:58 pm
(4) Nancy A. says:

Thanks for the advice, Marcia. Any kind of Rx. hormone treatment would not be an option for me since I’m also a breast cancer survivor. I haven’t gotten much help from herbal supplements either (and I hate swallowing those big pills anyway). So, I just keep small fans around the house and that’s a big help for me for the hot flashes.

September 11, 2009 at 4:31 pm
(5) Sharon says:

For me it’s my feet, if they get cold, they hurt! My ears are very sensitive to cold also. I have to wear a hat when the temperatures drop.

September 11, 2009 at 6:06 pm
(6) Dawn L says:

For me, strange pain symptoms come from shaving (especially my underarms), fans or air conditioners blowing right on me, and loud or sudden sounds. They all make my skin hurt in one way or another. If somethings scares me I get an electric shock sensation that runs from the top of my head to my fingertips. Fun!

September 11, 2009 at 7:05 pm
(7) Sandy says:

I have Raynaud’s syndrome from frostbite of hands and feet so all the extremity problems are perhaps related to this. My toes do not even like each other. I walk around barefoot because shoes bother me. Only shoes I can cope with are Keds Andre stretch which they have discontinued and in winter I wear boots or slippers. No tight clothes for me either. We should probably all be nudists.

September 11, 2009 at 8:38 pm
(8) DebV says:

Sandy..I have great results with The Walking Co. shoes. The style is “Unstructured.”

Nancy..I have had luck with Evening Primrose for female issues, including hot flashes. However, they are big, soft capsules.

I have sensitivity to light and sound. The more tired I am the worse the sensitivity. My medication has taken care of the “hurt” when I’m touched, so hugs are allowed now altho gentle ones.

September 11, 2009 at 11:10 pm
(9) Sue says:

I certainly agree about the seat belts. They rub on the side of the neck so much it feels like a big sore is developing. It’s not. I have the padded covers and adjustable shoulder belt holders, but so far nothing has helped.
I also have very painful feet. I have spots on them that feel like I have a huge deep bruise, and there is nothing there. I also have extra bone growth in the joints of my big toes, which is very painful. I can wear sneakers (loose) and croc-style shoes, but other styles have to come off in a couple hours max.
Thanks for the good information here.

September 12, 2009 at 5:53 am
(10) Garry says:

I am a 42 year old male that suffers from Fibro Myalgia & CFS for over 10 years now!
I have sensitivities to light, sound, heat and cold! The most severe is heat, with hot flashes 3 or 4 times daily! Which all have the ability to cause me severe pain, if i don’t get away from them immediately, They tend to cause my body and mind to just shut down on me completely as well as cause migraines and blacking out (Sometimes for hours).
I have not found anything at all to help me with these symptoms except to cool off when hot, warm up when cold and to go to a dark quiet room away from loud noise and/or bright lights!
The cramps that i get regularly are so severe at times that they cause dislocations, although not as often as it used to happen!
Any advice would be greatly appreciated!

September 12, 2009 at 9:36 am
(11) Charmagne LaPrise says:

For foot comfort I go to the Footsmart.com catalog for Merrill Walkers. Shoes with elastic laces instead of cotton don’t press the top of the foot. I use thick, cotton, “Diabetic” socks that don’t bind feet or legs. For bras try cotton sports or leisure bras, or just camilsoles or Tshirts. Leisure trapeze dresses of polyester and cotton can be found at PlusSize.com.

September 12, 2009 at 9:08 pm
(12) Margo says:

What exactly causes the excessive sweating? Is it hormonal, side effect of all my meds? or a combo of both? I don’t bother to wear makeup in the summer because there is no point – it just melts off. I’m just a shadow of my former self. boo hoo

September 14, 2009 at 1:05 pm
(13) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:


Good question about the cause of excessive sweating — I only wish I had as good an answer. So far, we really know nothing concrete about this symptom.

Just based on my own knowledge, here are some possibilities:

Neurotransmitter and/or hormone fluctuation
Autonomic nervous system malfunction (throwing off homeostasis)
An over reaction to heat stimuli
Medications or supplements raising norepinephrine too high

As for what to do about it … I wish I knew that, too! I get this symptom, but oddly only on my forehead. I’ve tried cold washcloths, cold air on my face, even antiperspirant, but so far nothing has worked very well.

September 20, 2009 at 12:54 pm
(14) Jackie says:

I have all of the allodynia forms listed above. I have at times thought I was losing my mind, but I have learned over the years what fibromyalgia has wrought upon my body. I also have 3 ruptured discs in my lower back and one in my neck. I had one fused in my neck in 1991 and a couple years ago the one below it ruptured. The surgery in 1991 was a complete success, but after a radical hysterectomy in 1996 I never fully recovered, then in 1997 my lower back injury occured and soon after that I was diagnosed with Fibromyalgia. I believe that eventually they will find a connection between Fibromyalgia and anaethesia. After any procedure where anaethesia is used on me, my condition worsens. The doctor who tried to perform my last colonoscopy said he had to give me three times the normal amount of anaethesia and I swung at him due to the pain and he had to stop, as he was afraid I would not come to if I was given anymore. I know the pain and fibro symptoms are very elevated after any procedure that anaethesia is used on, so now if my ailment isn’t going to kill me…I’m not letting them put that garbage in my veins.

I can’t wear clothing, unless it’s made of cotton. I have allergic reactions to so many things that never used to bother me. I used to spend endless hours in the outdoors, but now I have severe allergies. I loved the summer, the hotter it was, the happier I was….forget that now. I hate cold, but I love cool. I wish I could find a place where the temp stayed between 60 and 75 year-round. I swell with the heat and ache unbearable with the cold. Most of the meds they use for others, I’m unable to take. If I am in a place where they use the “new energy” friendly light bulbs, our government is going to force on us, I have to wear sunglasses or hello Mr Migraine. I can’t stand for anyone to touch me, it sets me off and for my husband, who is the most wonderful person in the world, that has been so hard ,as I was always a very snuggly person before this dreaded thing came into my life. I have liver damage from the celebrex they put me on, which did help with my arthritis…but can’t take it anymore.
I’ve had to learn how to limit myself, say no and ask for help (which is one of the hardest things, as I have always been extremely independent). I have started taking vitamin “D” , as my levels were way below normal and the doctor said they are finding that to be a problem with most fibromyalgia patients. So, I’m crossing my fingers and saying a prayer that it will help. My faith in God is the only reason I have been able to continue many a day.

September 27, 2009 at 10:35 pm
(15) Barb says:

I have been suffering with small fiber neuropathy for over a year now. I was dx with fibro in 1985 but then all these neuro problems raised their ugly heads and I thought I had something beyond fibro. I thought the pain frpm my cold hands and forearms and my cold feet and calves was from the Small Fiber Neuropathy but I have learned it is not so. I am so thankful for what I have read here I cannot begin to tell you. I am so sick of IAIYH dx by doctors who can’t or won’t take the time to investigate things.

The pain that I experience from this cold is sharp and high on the pain scale. Getting these parts warm is not easy. They don’t generate enough heat on their own so layers of clothing don’t always help. Just moving my arms taking a shirt off can cause the cold pain to start.

I’ve had burning pain as well and I don’t like that any better than the cold! I don’t sweat so being hot is very uncomfortable and makes me feel ill and weak. Does this happen to anyone else?

October 4, 2009 at 2:12 pm
(16) jane says:

I have had fibro for more than 10 yrs. I got it from a se, severe dog bite that caused an aneorbric infection (one that grows without oxygen) anyhow, 3 days in hospital, 21 days on IV and 40 days on Cipro at 1000mg a day. The following year I was dianogised with Fibro. Also, have had 3 whiplashes at least. Some of the above bloggers were talking about excessive sweating which I have developed over the last few years. last 2 hrs. Thyroid? hypo? On thyroid meds have your level checked, if close to too high, maybe your dr. will work with you to lower it. Also if you have PMS a friend of mine went of a vegan diet and lost all her systoms in a month. Often, my cool feet mean socks at night but it also means I maybe sweating. I use a cold pack or cold wash cloth on the back of my neck to bring down the temp. Also, I give my myself injections of B12 and magnesium, ain’t fun but often helps with the pain. Also a dry sauna helps by increasing temp. This last month in Tx the weather changes every 5 minutes and that can cause pain. I try to keep my body at an even temp with clothes. I also do something creative (painting) although my right arm and shoulder have the worse pain since i am right handed. enough for now. Hope some of this helps and I can learn from you. J

December 25, 2009 at 5:15 pm
(17) AnnW says:

You know, until I saw another post somewhere, I did not know that all women did not experience pain from the back of their bra. As long as I can remember that’s been a problem. Actually the same with most of my pain. I had a friend that did not realize that not everyone had a headache all the time. With all the OTC headache “remedies” if no one told you, why would you think any differently! Her headaches are not a 10 all the time but due to TMJ and a jaw joint that is barely hinged due to arthrits she litterally always has a headache. Do most of you have frustation with people not understanding or thinking that you are lazy and don’t want to work. I have worked since I was 15 and really do miss it. I wish that there was a way that I could go back!! It’s not realistic and it’s not possible. I am not even able to vollunteer because I never know how I am going to feel. I hate to be “undependable”. Good luck to everyone and I hope that you all find something that helps at least a little but hopefully more!!!

January 7, 2010 at 5:46 pm
(18) Chico says:

I started having Tactile Allodynia since I did a Magnetic Resonance exam without contrast. Is it possible? I think it is. Why? I don’t have a clue…

I don’t have fibromialgia, just allodynia, so I was wondering if it could be temporary and not forever..

April 28, 2010 at 3:48 pm
(19) Jessica says:

I have Allodynia, Fibromyalgia, as well as Pseudo Tumor Cerebri. The allodynia that I’ve experience is set off by fluorescent lights ( my whole body feels as though its covered in crispy burns in just a few moments) and temperature changes. Like the above poster I just always thought that everyones bodies hurt all the time, and that everyone was always freezing or boiling like me. I first got sick at 12 and now 15 years later I’m finally learning to handle the pain.

August 29, 2010 at 12:49 am
(20) Lisa says:

Hi Folks,
It is unfortunate that we are all sufferers of our symptoms. I read most of every ones posts. Much like everyone I too, have an issue with sweating and skin sensitivity and I have total body pain. I am a survivor from Stephens Johnson’s Syndrome. For those of you who don’t know what that is, you can get that only 2 ways. Mostly children get it but adults can get it as well. You can have a severe allergic reaction to a medication and it begins to boil you skin off, or the way I got it I had Pneumonia that went untreated and went sepsis and I boiled inside out and got 2nd and 3rd degree burns on my skin (Now causing my Allodynia pain).
Most don’t survive this, and if you do, you even may even may be blinded by it, I was lucky, I didn’t die or go blind.
But I do have a alot of secondary issues from it, that I couldn’t begin to list. I have all of the pain sydromes and polyalgias. the excessive sweating I did just learn from the Stephen Johnson’s website that because of my condition, that my pores are scarred shut, which does explain why I am so hot all of the time. I only sweat in certain spots, like my face and head, and I am an easy target as a heat casualty. what I do for my feet, I wear super soft cushy slippers all the time and I change them out like every three months. If my feet are happy I am happy. I no longer work, I served in the Military for 17 years before I got ill. I can’t say for certain if the chemicals I was exposed to caused my illness or not. But if I were asked the day I got better to go back in I would, absolutely, God and Country, For our Freedom Always! I do hope one day you all feel better, as do I, God Bless.

August 30, 2010 at 11:05 pm
(21) Rebecca says:

My FMS pain is all about allodynia. In fact, I RARELY have the muscle pain. For me, it’s all about the skin pain. The feel of a light breeze of air from a fan, a touch, my clothes, all hurt, like fire. Cold makes it worse, more sensitive.

For a few years, in the beginning, vibration was something fierce. I’d ride in the car hunched over in a curled up ball, in pain from the vibration of the car. (and this was a newer car).

This has actually caused problems with my doctors, because they’re always wanting to focus on the muscle pain, of which I rarely have, and can handle fine w/o medication.

Any muscle pain I do have comes and goes, a situation I can mentally work through. But the skin pain/sensitivity – that’s constant. Before I had adequate pain control I was actually cutting myself, in order to NOT feel the skin pain. Sounds weird, I know. But it would distract me from the mind-numbing, always there skin pain. I eventually became suicidal because of the amount of pain, the fact I could not get any relief, ever. FINALLY a doctor began to treat it, and since then I’ve not cut once. The doctors before assumed the cutting was emotional, that the anxiety was emotional — but it was actually physical – the pain was causing me to be anxious, the pain was causing me to cut. It’s the difference of a sharp pain, or a constant dull pain that never stops. I could focus on the sharp pain, distracting me from the skin pain.

August 30, 2010 at 11:12 pm
(22) Rebecca says:

I also forgot to mention — to combat my skin pain/sensitivity, in addition to medication, I also tend to wear loose clothing, but also long sleeves and pants, even in summer. For instance, I tried to wear shorts for the first time in years the other day because I wanted to spend a nice day at the local park reading. Instead, I spent the whole time shifting uncomfortably because of the pain of the wind. I’ll even have a blanket on me in 90 degree weather, to keep the air off me.

And as for medicine, Neurontin and Lyrica were the best I found for skin pain. But eventually I built a tolerance for Neurontin. then I tried Lyrica. Thought it was a godsend at first — until I lost my eye sight. I can no longer see out of my right eye because of the lyrica — and I had had such high hopes for it. We can tie it directly to the lyrica because it would get worse when we doubled my dosage, and better when we stopped taking it all together. And because it’s neurological, and not physical, there is nothing they can do to fix it, not even glasses.

September 10, 2010 at 4:53 pm
(23) Mary says:

I’m learning a lot of everyones comments. I was diagnosed with CFS about 2 years ago, but have had sensitive ribs and chest pain for years.
Also I wonder if anyone has earache ? My ears hurt on the outside and I cant even touch them. Same with my head. It hurts on the outside and I have to take tylenol every 6 hours which I hate to do and wonder if there will be side effects of that some day, I try to go without but the pain is too bad.
I’ve had to stop a lot of my activities and some days feel like I cant do anything.
I’ve just started taking Vitiman D.
I’m 76 and have had a heart attack ten years ago , I’m afraid to take much medicine other that what I take for my heart.

December 13, 2011 at 2:06 pm
(24) Annick says:

I HAD a burnout and fibromyalgie, but I am curred through the operation of Prof. Dr. Bauer from Switserland. He knows what causes fibromyalgie and can operate this. You have more than 90% to cure.

March 16, 2012 at 4:02 pm
(25) neema says:

garry, you left a post on here back in 09. you said that you pass out sometimes for hours at a time. please ask your dr to check your cortisol level. it sounds to me like you may have adrenal insuffiency, but i’m not a dr. but i do have AI.

July 12, 2012 at 4:28 am
(26) Amanda says:

I have Fibromyalgia with Allodynia. I have Tactile/Kinetic(light touch), Temperature(cold) Auditory(sharp, loud) and Visual.

No one ever mentions Auditory or visual stimuli causing pain, but it does for me. I cant stand the tv section of a store, especially if a sports game or something very active is on I just hurt all over.

And just too much stimuli in general, like crowds, background noises, parties/church worship/sports/ can make me hurt.

Does anyone else feel this?

January 15, 2013 at 7:40 am
(27) Steven Blake mba says:

Thank you for sharing this valuable information.

Because no two people with Fibro have the same range of symptoms or severity, I think the answer lays in what you all have in common.

I have been studying this and it seems all people with Fibro have great similarities in how it starts and progresses (despite differing symptoms).

It is my theory that somewhere in your neurological processes it is mistaking sensations, therefore it is treating sensations as pain when it should be something else. I believe that your neurology gets overloaded by the initial trigger and it trips a switch, causing crossed pathways.

January 15, 2013 at 9:39 am
(28) ARaesMimi says:

I haven’t been able to wear a bra in over a year. I wear tank tops under my clothes…they aren’t the perfect solution, but there is no pain associated with the tanks. I am also having problems with my socks, shoes, sheets and blankets touching my feet…it feels like my feet are raw and anything touching them set them on fire.

March 30, 2013 at 11:50 am
(29) vicki says:

For those who are concerned re hot flashes and estrogen. There is now a treatment for them that is estrogen free. Ask
your doctor

March 30, 2013 at 2:41 pm
(30) Kim M says:

Wow, I felt grateful to see this bc for over a year I’ve had issues with certain patterns on clothes, flashing lights, etc and I’m so cold all the time and when I’m cold, I’m cold! I began having migraines about 2 years ago and was dx with fm about 5 years ago.I cant use any perfume or scented lotions at all bc they cause terrbile headaches. I’m learning but for the last 2 weeks I’ve had the worst flareup that I’ve had in a really long time.I have had 2 neck surgeries and have a lot of issues going on in my spine so sometimes its hard to tell where the pain is coming from.I’ve had trigger pt injections in my neck/shoulder area and they didnt help at all.Just trying toget through like all of you.Be blessed today!

May 13, 2013 at 3:55 am
(31) Deborah says:

I am so glad I found this site snd now know that others are experiencing the same things as me. My skin at times feels like some one has poured gas on me and lite a match! It hurts so bad and nothing stops it. I have problems with bright light, loud noise, and people or clothing touching my body! People think I am crazy, manydoctors have told me that “there is no organic cause for your pain” Well I can tell you I do not care what the cause is, I just know IT HURTS SO DOG GONE BAD I JUST WANT IT TO STOP!!! Thedoctors say I am depressed and that depression causes the problems. I TELL THEM “I AM DEPRESSED BECAUSE OF THE ILLNESSES, NOT THE OTHER WAY AROUND!! Why won’t they listen? I am not crazy!!!!

June 3, 2013 at 9:03 pm
(32) rita says:

so many DRs still blame mental Illness !!,,for me I think some of the problem is from the spinal shots for child birth.the rest I have no Idea,,my skin pain has eased at times ,,Neurontin,& Cymbalta help some,but the low back muscle spasams make me feel like I am going crazy,,clothes are too heavy & tight,,some smells make me so sick.,I loved to read,, now I cant concentrate past the first page,,I don’t like to leave the house now,, before,I was the first one in the pool ,,I don’t sleep for days,then Ill sleep too much ,,constapitation ,,is so bad it makes me bleed,so I take stool softeners,what will all the meds do to my liver, kidneys,bladder?? and the DRs wonder why we are dipressed ??

September 13, 2013 at 12:30 am
(33) Katrina Turner says:

With. Regards to hot flushes try sage leaf extract, you can get them in a small capsule form about the size of a small pearl. These are available from most health food stores but I got mine from a store in England via ebay. These have definitely made a difference to me and my sister both fibro suffers.

October 14, 2013 at 1:32 am
(34) lisa says:

Wow. Glad i found this. My head is having a hard rapping itsself around this digonosis. Took 5 years and lots of surgery and treatments i didnt need. Anyways. I only weight 100lbs and i wear my husbands cloths. Dont waer socks or shoes.hate water on my face. My skin wigs me out. Sometimes i get huge patches down my legs that burn but hurt bad qhen you touch them. These are things i havent brought up to the doc yet, i think they Lready think i am crazy:)

December 19, 2013 at 6:22 pm
(35) Kelly says:

I honestly feel all my symptoms started with the epidural I received during childbirth 6yrs ago. I don’t always have full force of the symptoms, but since that day all my senses have been in a heightened state.
My Allodynia have wax and waned over the years. It got so bad last year that it hurt to sit up just to brush my kids hair. I went from lifting weights to not even being able to carry my purse and was jogging 15-20 miles a week to barely able to walk to my mailbox! I now can walk for quite a long distance and am able to lift light weights again.
One Dr. has diagnosed my with Fibro, another is ruling out as much as possible. I have been to E.R., Mayo Clinic, Rheumatologist, internal Dr., Urologist, Gynocologist and even a Psychiatrist. We have ruled out myositis, stroke, MS, ALS, Lupus, and others. We are now looking into sending me to a geneticist to see if maybe I have a glycogen storage disorder. I do have an uncle and a few aunts with Fibro and cancer also runs high in my family. I don’t know if there is any correlation, but thought I would mention anything I can think of.
I have grade 1 spondylothesis, degenerative disc, stress fracture in my lower back. I see a Chiropractor and it has helped release a lot of tension and pain. I have taken myself off my Lyrica (75mg 1x daily) and am now trying to maintain a homeopathic way of finding pain relief.
I don’t know if anyone else experiences a feeling of inflammation with their Fibro, but sometimes mine gets so bad I have had to get on Prednisone to get relief.
Psalm 18:2 The Lord is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold.

January 21, 2014 at 3:14 pm
(36) erica says:

Ugh….I have pain that is so unusual…for instance, suddenly my toe (under my nail bed) will just throb, nonstop….or I will get a stabbing pain that jolts my ear lob…or I will just ache as if I have a terrible fever. I have certain aching pain daily…ie, shoulders, neck fingers bottom of my feet…these other pains just randomly occur…no warning. I do know when I sleep the sheets need to be taunt, I can’t have any folds in my night wear or bunching, cause these things that are normally just annoying cause my pain and discomfort. Exhale…..

May 8, 2014 at 11:53 am
(37) Bobbie4201 says:

Thank goodness I’m not the only one with these problems. For years I have cut tags out of the neck of all my clothing (my family laughs at this) because of it totally irritating me; and can’t stand the bed sheets to be wrinkled when I try to sleep. Touch, smells, lights, noise all bother me to some extent. Sometimes I have had to leave certain stores because the environment causes me to have panic attacks. Other times, I can go into the same store and it doesn’t bother me. When I am having a “flare up”, everything it a problem. Hate this FM and CFS!

May 10, 2014 at 4:25 pm
(38) Karen says:

Blood pressure cuffs! The pain is so bad it makes me cry! Yesterday at my doc’s office, they refused to take it on my forearm, as has been done in many other doc’s offices. I was crying when I left.

May 10, 2014 at 7:20 pm
(39) Tan says:

Bright or strobbing/flashing lights and certain types of sound; sirens; repetative high pitched sounds; dance music with that infernal duff duff duff base beat; checkout beeps; whistles and brat screams (regular natural upset baby cries and laughter doesnt cause it but forced screaming does), all cause pain similar to costochindritis and nausea in me. Combine more than 2 with general background noise and I experience absences which have been very dangerous to me. (MRI have come back normal… i have investigated) I think it is a defence mech in my brain to lessen the pain which i can override temporarily if i realise it is happening now i have diarised my experiences and lookd for patterns. Downsides to this being, i have to catch myself very early in the process in order to prevent the absence which i am only about 10% successful in and i need to be able to escape the stimuli, eventually it catches up with me giving me a double whammy of the absence and the pain… kinda like when we push ourselves beyond the point we know we should stop. My sister has very quickly learned to spot them happening and reports that i become both irritable and incoherant before an absence and after. Scary stuff that has left me too scared to go out unsupervised. My dog Raven can spot them and dangerous situations (road crossing particularly) and i feel safe having him with me if i have to go out alone. There have been some traffic related near misses that could have ended badly if not for Raven.

May 11, 2014 at 4:17 am
(40) Eugenio Vandelsen says:

Hi Everyone… Thanks to all of you for helping me understand what one can go through when suffering of Fibro or CFS/ME. I did not realized there was already a name for the feelings I had when people came to close to me and when hugs were no longer that loving show of affection.

As so many of you I can no longer stand to be squeezed in by clothes or even by blankets. Seatbelts hurt and elastics of all kind are avoided.
Sometimes I am out of breath trying to overcome a feeling of panic when I am in a crowded area. I don’t like to be touched nor bumped about in markets or stores… and can get really angry (inside) when it happens.

I am living in Spain although I am Belgian .. and most of the drugs you mention in your comments are not found here or maybe have different brand names, meaning I can only read about but can certainly not hope to use them. What a pity.

If anyone has any good advice for me I would greatly appreciate it.

Wishing US all the best and a very prompt recovery to our dear Adrienne.

Warm regards.

PS. I am 72 years old and have been suffering of CFS and Fibro for almost 40 years now .. without “knowing” it… What a waiste of time.

May 11, 2014 at 4:22 am
(41) Eugenio Vandelsen says:

To the att.of Bobbie 4201.

I just read your comment and dear G.od does that sound familiar. All you wrote I can just quote and it will be mine to tell. Thank you Bobbie for :
“Thank goodness Iím not the only one with these problems. For years I have cut tags out of the neck of all my clothing (my family laughs at this) because of it totally irritating me; and canít stand the bed sheets to be wrinkled when I try to sleep. Touch, smells, lights, noise all bother me to some extent. Sometimes I have had to leave certain stores because the environment causes me to have panic attacks. Other times, I can go into the same store and it doesnít bother me. When I am having a ďflare upĒ, everything it a problem. Hate this FM and CFS!”

I could not have said any better. Thank you my Friend.
Warm regards.

May 11, 2014 at 3:44 pm
(42) Candra says:

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May 11, 2014 at 6:57 pm
(43) Glynis Knapp says:

I can associate with all three types shown. I have found that by just wearing a stretchy night bra helps the shoulder pain xx

May 12, 2014 at 1:13 pm
(44) dessous coquins says:

Supeгbе &rho;оst, ρérеnոіѕе
ԁaոs cеtte νоіe

May 12, 2014 at 10:08 pm
(45) Bobbi says:

I have fibro and migraines which they keep telling me will go away with menopause…well I’m 5 years post-menopausal and the migraines are as bad as ever. One thing I’ve noticed over the last 5 years or so is that my scalp actually hurts, at first to the touch and now all the time, especially at work where I have to wear a headset for 8 hours a day. it barely touches the top of my head but it HURTS!

I cut my waist length hair off because of the inevitable tangles and pulling from braiding or pulling it into even a loose ponytail.

Pain, pain go away.

The other thing is the feeling of a fan blowing on my hands or face. If I get too hot I have a small one at my desk but I can only use it for a few minutes at a time because the feel of the air will make my hands hurt (understandable because of the arthritis in my fingers) but then it makes my face hurt and feel stiff.

I wear sunglasses all the time because light hurts my eyes, just normal pain in my eyes. But loud noises, especially unexpected loud noises, strobe lights, scratchy fabrics (like the polyester shirt w/the company logo I’m occasionally forced to wear) induce a feeling of anxiety in me that just won’t stop. The longer the feeling, the worse the anxiety.

May 14, 2014 at 5:11 pm
(46) vee says:

OMG, Bobbie4201! i too have have all these issues. The checkout beeps like just go through my body. Tags have to be cut off, bras are a pain,life can be a pain but living the best I can with this “FINE” FIBRO

May 16, 2014 at 6:27 pm
(47) Frances says:

I have all of what you have commented on. I can’t stand to be touched, loud noises, crowded malls, repetitive sounds, etc. If I bump myself, brush against something, etc., I feel like it is a major pain event. I have a suggestion for those of us who hate bras with this condition. I discovered Genie Bras about 3 years ago and have not worn a regular bra since. I am a 36 DD and have tried both Genie and the Ahh Bra. I got the best support from the Genie Bra. Regular bras caused so much pain for me in the shoulders, underarms, etc. I would develop sores where the bra rubbed on me. I wear pjs at night but am so uncomfortable. I feel every wrinkle in the sheets and sometimes feel like the Princess and the Pea story. I was diagnosed within a year after my husband was murdered. If trauma can cause it, that was what did it to me. It has been a painful journey for the last 20 years.

May 16, 2014 at 9:12 pm
(48) Deborah says:





May 16, 2014 at 10:51 pm
(49) penny says:

I would like some feedback on Lyme Disease. I had a positive test taken by IGeneX, and showed the results to my Infectious Disease Physician. He repeated the test at Stanford, and it was negative. I know several people with Lyme Disease, and they have similar symptoms that we share. An interesting book ” A Twist Of Lyme” Could not believe what the author went through to get better.

Blessings to all,

May 20, 2014 at 8:49 am
(50) stephy says:

I have all symptoms listed. I know i am not alone with this dehabilitating disease. I had to think long and hard about these stupid and unforgiving problems. Where did it start? Why did it start? I have come to the conclusion that for me it started in early childhood.my mom would bring me to her favorite store as a kid and id literally get sick and didnt know why. The lighting, yup, the lighting… til this day lights hurt sending painful jolts thru my body all the way from limb to limb. My fibro worsened over time. I am now to sore to wear tight clothes, including, the infamous bras. I have learned to listen to my body and its restrictions.

May 21, 2014 at 9:35 am
(51) Lisa Koppelman says:

I too have fibro. The lighting in many stores use to put off a sound that was painful for me. Mostly it seemed fluorescent ….very eyesensitive to sunlight. Literal pain with high volume in radio ..less so with speakers on in back vs front…:-/ crazy it all sounds. The pressure of my bra around my rib cage causes my back to hurt so much……often I pref to wear a shift vs pants as my stomach is uncomfortable……. I can barely eat anything with food sensitivities to almost everything. Going to UCLA next week after four years of this…..all this plus pain if I exert myself in the least….ding any yard work, which is my mental therapy…..where is the fairness?

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