Sound Off About Symptoms: Fibromyalgia & Chronic Fatigue Syndrome

I just wanted to say thank you. I don’t normally leave comments but I just wanted you to know how much your articles mean to me and how much you have helped me to learn about my illness & try to cope with my life with ME/CFS & FM. xoxo

Its hard for physicians to make sense of the plethora of symptoms which appear to be very variable from patient to patient and even for the same patient over time.

But speaking as a long term ME patient with a bioscience degree IMHO there may be an explanation for this which involves the immune system, since it contains a biological randomiser which puts together antibodies randomly in a hopeful quest for a way to fight pathogens. Sometimes this quest leads to autoimmune cross-reactions.

If such random cross-reactions were behind aspects of ME/FM/CFS inflammatory symptoms it might explain why they are so random and widespread through all the tissues of the body, affecting nerves and muscles and joints in a manner comparable to the widespread affects of Guillain–Barré syndrome, in which autoimmune cross-reactions with the nervous system at different points can lead to various different kind of paralysis. For example it is surmised that Franklin D Roosevelt’s paralysis was due to this kind of cross-reaction but equally it can also stop people breathing.

Everybody produces autoimmune cross reacting immune cells now and then. The immune system’s built in randomiser cannot help making a few. There is a mechanism by which cross reacting immune cells and antibodies are suppressed by the body’s own feedback systems but sometimes only after a long while of suffering and in some cases never and this allows serious diseases to begin.

It is well recognised that ME involves a disturbance of the immune system. If this includes an increased vulnerability to autoimmune cross reactions or a difficulty in suppressing them (which the Norwegian Rituximab study result makes more plausible), it might explain why the confusing complex of symptoms surrounding ME CFS is so diverse.

i can so relate. i have been fighting this for more years then i care to admit. Dr’s where i live come and go quickly, each new Dr has their own idea what is wrong with me. Each, without testing, claim i was misdiagnosed and i end up starting from ground zero so to speak. in 1993 it was test positive Lupus SLE. then liver disease, hypoglycemia, C.O.P.D, Spastic colon, I.B.S, Barrett’s esophagus, Fibromyalgia, Chronic Pain disorder, Chronic Fatigue, Multiple sclerosis…. just to name SOME of the test positive Diseases and disorders that have been thrown at me all to be deemed “misdiagnosed”. tumors, cysts, bone matter, all just disappear. on one mri and gone on the next. Medications coming out of my ears. Fed up. stopped all my meds including 750ml Lyrica daily. i am currently looking for a med that i can take only when i hit my pain limit as well as something to help me with the constant lack of energy. or a name of a REAL DOCTOR in Ontario. LOL. thats my vent for today. you are a wonderful person, keep up the good work.

I’m sorry you are going through this but, let me assure you, you’re not alone. Are you sure we aren’t twins? I have been having low back pain and hip pain for weeks now every single day, and constant. It gets pretty unbearable, no matter wether I sit, stand or even lay down and elevate my legs/feet. Also, been having thigh pain with it too, in the fronts of both of my thighs, as if the back, hips and thighs are all connected into one major flare of pain for weeks.
Like you, too, I don’t sleep. What little I do get? Night Sweats wake me. Also my brain is on overdrive at night, everything and anything is crowding in to make me think. lol Even been on Ambien and Doxepin, for help with sleep/night sweats and no relief.
I hope you get relief and feel better soon!!

Ongoing pain in left thigh and hip that make sitting, lying on my back, and lying on my left side miserable.

Mind-blowing fatigue. I look out at my backyard, and feel like crying. It used to be a calm, beautiful sanctuary for me. Now, I see dead plants, overgrown garden.

Lonely! I’ve become very isolated because of the fatigue.

Thanks for letting me vent!! )

Pain is one thing there are drugs for that, but fatigue is what gets me and then all of a sudden it will be gone. Its enough to drive you mad.

My fatigue is so constant I can only work about half-time. Hardly enough to pay for all my meds!! And still I can’t sleep. It’s been 19 years of hell and yet everyone tells me how healthy I look!

I don’t know about your hips, dear friend, but when mine hurt it is really my lower back that is hurting and sending waves of pain to my hips. Just about the worst pain for me, I do also have DDD, disintergrating disc disease, so it could be this. Anyway it’s called “radiating” pain and it sure is.

Today is a very painful day for me, too. Took a whole hydracodeine, when normally a half will do. One looks for relief whereaver it’s available. I do wish you could get some good sleep, though. Are you still not seeing a sleep specialist? That’s been my main salvation, a good sleep dr. with numerous ideas for help. I think I’ve had three sleep studies with him, the last, just to test masks for my sleep apnea. Your dr. is not doing enough.

Sorry you’re having a bad pain day. I join you in this. The barometer is changing, we all feel it, and the hip pain is really radiating from my lower back the rheumy tells me. I’ve taken all the pain pills I’m allowed for this hour, and still, I’m hurting so I don’t know how people can function without pain meds. It’s a mystery to me. I’ve swathed my hands in Voltaren gel, they ache from typing. Even typing is too much activity today.

How we manage to live like this is the marvel! Someday, when this disease gets the respect it deserves, we will be seen as heroes, survivors of constant pain and frustration. All the things we cannot do and wish we could. Well, join the crowd. There are millions of us and still not enough research. We need to be more vocal, and you’re a big help with this. Thanks, Abby

How about uncontrollable head nodding? It’s a new one for me and let me tell you how much this one sucks! I don’t know if this is fibro related or not, I’m interested to see what the doctor says about this. Ohhhhh, here we go again.

I love reading your posts! I always feel like I’m not alone in this wonderful world of foggy brain, pain and craziness I call life.

Horrible neck and shoulder pain… likely as a result of trying to stop my head from moving around.

Like you, noone can seem to find the source of my digestion issues. Whatever it is… I’m not enjoying this.

Thanks for supporting all of us. Have a better day!
Take care.
Tamiko

Hip pain, back pain, get your doctor to check for kidney stones! To top off the joys of fibro pain, add the joys of kidney stone pain to the list. Not fun!!!
The heat and humidity are not helping in the least. I’m getting sweats continuously day/night doesn’t matter. No air conditioning so I sit in front of a fan to ease the worst of it.
Constant nausea, feeling like my stomach is going to do a barrel roll and I haven’t eaten anything Ginger Ale seems to help the nausea. Taking gravol turns me into a zombie so I avoid it unless I’m desperate.
Sleep is sporadic at best. I feel constantly tired and with the heat, everything sticks to me and keeps me awake or wakes me up.
To Corra, I’ve been diagnosed with just about all of the diseases you named except for MS but that looks like it may change in a few weeks At least my doctor is willing to keep looking when new symptoms pop up which is very often.
To Tamiko, I’ve had the head tremors for 2 years now and no one seems to know why. It creates tons of tension in my neck and shoulders, don’t try and stop it, it will only make it worse. I just let mine be and it comes and goes. It seems to be affected by how stressed I am, tired, or weak. Doctor is beginning to think MS, but we have to do the MRI yet.
Just found out that I apparently do not have neuropathy… so why are my feet numb??!!! and why do I keep going numb in my arms/hands/neck and ears???!! Nobody knows…. as usual.
I have to keep cancelling meetings and social events because the heat just makes me hurt so much more. I’m tired of not being able to do what I want!!
There’s my dollar’s worth of frustration.
Thanks for letting me vent!

I’d like to thank Tomiko for mentioning head nodding. I do this, too, and I think it makes me look ancient. It does happen more if I’m tired or anxious, and it cannot be controlled.

I don’t know if it’s part of fibromyalgia, and would like to know more about this. Do you think you could make this a question for comments, Adrienne? I would appreciate it. Thanks, Abby

I’m another person who doesn’t leave comments but reads your column. Thank you for it. I can’t thank enough my Facebook friend who lead me to you.

I was finally diagnosed in 2008 after many years of mysterious ailments. Even my mother thought I was a hypochondriac!

Last fall I started having breathing and allergy issues.(thanks global warming) It ended up with me needing a pacemaker. Then came the biggest meanest flare I ever experienced.

Several years ago I was almost wheelchair bound and diagnosed with type 2 diabetes,sleep apnea and A-fib. My life centered around Cardiologist, Endocrinologist, Pulmonologist and my Primary. My poor husband, we are self employed and he tried to keep our business together as well. We paid 1500.00/MO for health insurance. BCBS found a way to cancel me. While we were able to get another policy it costs 1800.00/MO!

Now I’m on medicare and am already in the donut hole. All my doctors gave me meds. I will say though that large doses of Vitamin D, Celebrex and Lyrica have helped me out of the wheel chair and feeling like a whole person until this past Feb. when my flare started. My fog is lifting but not completely. My diabetes is under control and now I’m pre-diabetic. Feeling better, nutritional guidance and some exercise (minimal) helped me to shed 100 lbs. I still have a lot more to go.

There is still a years backlog of paperwork sitting on my desk and for the first time in my life had to file for an extension on our taxes.

With a full moon on the horizon and this heat wave today is a very high pain day. I’m going to PT for sciatica and my therapist helps fibro patients as well. After 2 sessions the back/leg/hip pain is bearable.

PS, I don’t have insomnia but that may because I have a bi-pap machine with a O2 concentrator sounding like a compressor lulling me asleep. When its not on I do toss and turn all night.

Thanks for giving me this sounding board.

OK, Here we go. Ready? My friends do not understand and contstantly call me a hypocondriac and push me to my limits and then I end up in bed for 4 days. My boyfriend pushes me and then gets mad at me when I am cranky and in pain and he cant see anything. It frustrates him that he cannot understand what I am feeling. I do not have a job anymore and I suspect it is because of this even though I worked my ass off and was killing myself to smile when I was in more pain than the person on the other side of the counter. I was a pharmacy technician. My doctor puts me in a straight up panic attack mode now because I know he doesnt understand it either but I do my homework and I show him my research so I show him what I want to take So I don’t get all messed up like the horror stories I have read. However, when it comes to pain…there is nothing he will give me to help it and I am drinking occasionally just so I can get a break! I also have lost my sexual appetite (the one that barely existed before) and I just want to make my boyfriend of 3 years happy because I love him so much!!! My back and hips and legs are my main problem. I have other conditions as well. I loose my legs and cant walk sometimes. I am only 22 years old. WHY?

I feel all of the same pain, aches, numbness, IBS, fog, fatigue, ect. The thing that is bothering me the most now (it’s really the pain, but stil) is when I hear, “You don’t look sick.”

How the heck am I supposed to look?!? Can someone please tell me that? Am I not supposed to not bathed, comb my hair, or do any personal hygiene? Is that what sick looks like? Or am I not supposed to try to act normal? Am I supposed to let the pain and everything else I’m feeling show? Well I can’t do that, what would people say then? That I’m faking, lazy, looking for attention, don’t want to work anymore, looking to live off the government, what?

I say that I would not wish this suffering on anyone. Then I think if some people could experience this pain for just 30 minutes or even less, they may understand. I am so tired of those that don’t understand or don’t believe, what millions of us feel, is actually real!

On another note..I thank God my family is understanding and beleiving. I pray for those of you whose family is not.

Thanks for a place for us to vent. I read all of your post and the comments. They help me live with these illnesses.

I WANT TO THANK YOU SO MUCH FOR THE WORK YOU DO TO HELP US FELLOW PRISONERS OF FIBRO. WHEN I FIRST WENT TO THE DOCTOR ABOUT IT HE MADE ME FEEL LIKE A DUMMY AND THERE WAS NOTHING WRONG. IT HAS GOTTEN BETTER, BUT THE REAL HELP IS KNOWING YOU AREN’T THE ONLY ONE. YOU HAVE HELPS FOR US AND WE KNOW THERE ARE OTHERS THAT FEEL OR SHOULD I SAY HURT LIKE WE DO. KNOW HOW MUCH WE ALL APPREICATE YOU!

The relentless unrefreshing sleep is the worst part of CFS/ME as it doesn’t matter if you have 4 or 6 or 12 hours of sleep, you always feel like you haven’t slept at all. Since getting ill, I haven’t been able to get a full night’s sleep. I wake up 2 – 3 times a night.

I find the biggest challenge is not knowing when I’ll become too ill and have to lay down. It could happen a ½ hour after getting up in the morning or a split second after feeling ok and it happens for no apparent reason. When “it” strikes, it feels like all the energy is being sucked out of my body, brain fog sets in and I have to lay down ASAP.

I’ve had CFS for 25 years, undiagnosed because most physicians don’t believe in it.. On a positive note, I was just diagnosed in March by a top CFS specialist, Dr. Alison Bested and even though I always knew I had it, it means so much more to me to finally put a name to it.

THANKYOU for all the great info you provide, this is my lifeline to sanity and knowing there are so many of us in this madness. I am 62, life long suffering, had this as a kid but by pure will power kept working hard stressful jobs all my life till I said for the first time in my life “I can’t ” at 58. Those words just don’t exist in me and yet it’s the truth I have to face every day. I hope for a diagnosis, still don’t have one, before I die, just for the record. No health insurance, Oh yeah, found out I have celiac disease after being told it was IBS for 15 years. You guys might want to get the biopsy because changing that diet made a big difference, at least the gut stuff is calmed down. And I could go on and on and on. The sweats all day and all night are the worst, and the feeling like I am going to faint all day…..Sending you all the best, fran

Thanks, Adrienne, for the chance to vent. You are the best!

I am extremely intolerant of salicylates (aspirin) in medications, foods, and topicals. I can’t eat any fruit except pears, few veggies, no spices of any kind, especially mint and cinnamon, no nuts except raw cashews.
The reaction is delayed and cumulative, so it’s very hard to figure out what I can eat. Salicylates help plants defend themselves against bacteria, mold, etc.

Symptoms are extreme fatigue, pain, brain fog, depression, all the same as fibro, so no wonder doctors don’t believe me. At least I can control it some with my diet.
Life without peaches, cherries, pineapple, (endless list), might as well take June off the calendar.

Rachel, I completely agree with you. My #1 complaint is “But you don’t look sick.” When I am sick I don’t get out of the house. When I do have something planned, I space it out up to 3 days before. Just getting ready takes it all out of me. I space out a shower, makeup, hair and dressing in 3-4 hours. Otherwise, I’ve used up all my energy and I’m too tired and in pain to go anywhere. Over many years, I’ve learned tricks to try to be able to get connected outside my house. BUT, there are so many days when I’ve planned something and I wake up with my body yelling at me, “No, I won’t let you do that today!” The ONLY way I have found to make those close to me understand Fibro is to educate them over and over. I print out articles from CDC, Johns Hopkins, Mayo, the top nonprofit organizations, find online pamphlets – and gently work on each person until he/she finally realizes what’s happening to me. To finally see the “lightbulb” go off in a family member or friend’s eyes is HEAVEN. Now I can finally just be me and work through it all with support instead of puzzled looks and quizical minds. Now that I know this is the only way for me to explain to others about Fibro, I’ll continue to do this the rest of my life. It gets easier, but the genuine ignorance still continues. Why can’t this be a major celebrity or top government official syndrome to get some MAJOR attention on us? I still have friends, very highly educated friends, who don’t even think to take the time to look this up on the internet. That’s my 2nd biggest frustration! Deep breath, Nancy, deep breath.

I am recently diagnosed with fibromyalgia. I have had my symptoms for many years. I have many symptoms but two of the worst ones for me are the CHRONIC FATIGUE. I will HAVE two days where I am doing pretty good and then WAMMY. I feel like someone has put a hundred pound brick on my head and I am walking in cement the tiredness is so horrible. The other complaint I have is the sharp shooting pains I get in my legs and arms. They feel like someone is sticking needles in me and just dragging them along my body. Not to mention the fibro fog. I have to write myself notes or I would forget a lot of things. Yes I do appreciate your articles and sharing information with all of you. I wish everyone well and that we get through this. I tell myself things could be much worse and I have much to be thankful for besides the fibromyalgia. JC

The fear and anxiety that come with the roller coaster. I had meningitis a year ago and then crashed as badly as when I came down with this 17 years ago. Brain zaps, weakness, insomnia, sudden recognition that if I get in that car as planned and go do x, there are going to be really serious consequences. I have no predictability right now, bouts of nauseau and now I don’t know how to deal with the sudden and extreme anxiety that comes into play now. I’ve been too sick for too long and now i’m on MAF 878 and not sure it’s helping or even right for me. Appetite? What appetite. But I know I have to eat. The 100 plus heat wave is NOT helping! Thanks for the chance to share, read and be heard. Thanks for what you do, this is such a serious illness with a stupid name. If the right people had it, we, too, would have products that give proceeds, millions in research!!!

I can trace my Fibromyalgia all the way back to about the age of 10…so i’ve been suffering for at least 31 YEARS!!! (yup!)
Back then my mother didn’t know what to do for me – took me to the docs – but this was like 1980 – so was always told “It’s probably just growing pains”…HELLO – I should be 20 ft tall then!! Haha!!

My arms and legs hurt all day – i can’t sit on the floor to play with my daughter or both legs get intense pins and needles and brings on pain that will last for DAYS.
My arms hurt doing chores, driving, and just about everything else. If you poke me in the arm – immediate intense pain for days! And don’t get me started on getting my blood pressure taken at the doc! OUCH

I can’t sleep – because as a side-sleeper, I have to literally flip-flop all night long as each arm goes numb. My meds don’t give me much relief – and I am smothered in Ben Gay every night for a little relief.

I was mis-diagnosed in the early 90′s as having Bursitis and endured horribly painful cortisone shots in each shoulder…never helped. Then there was the MS mis-diagnosis…

I have IBS, Chronic-Fatigue Syndrome and chronic daily migraines…and “fibro fog” so HORRIBLE and i feel like an idiot cuz i can barely finish a sentence because i can’t seem to find the word i need!

I have tried EVERY imaginable medication out there – but only managed to gain a ton of weight on them – THAT didn’t help! Doctors don’t know what the heck to do for me anymore! I’ve done it all – Neurological testing, MRI’s…aaagghhhhhhhhh!!!!!

I fought for 3 and 1/2 years to get Social Security Disability – and after my lawyer LOST my case the first year – i took it on myself all the way up to Federal Court level and WON. Soooo frustrating when a judge basically tells you you’re full of crap and it’s all in your head.

I have a hard time getting people to understand why i CAN’T do this – and CAN’T do that…nobody ‘gets it’.

Anyhooo…THANKS FOR LETTING ME VENT!!

Me again!!! Lol!! Forgot – to add to my list of complaints – a FAN can cause pain on my arms during the summer!!! Air conditioning hurts sooooo bad – but I have to use one in the summer to counter-act the horrible pain I feel from the humidity outside! Then – comes winter – and I live in Massachusetts so we get COLD…more intense pain.
My pain is non-stop – just different degrees of pain. I honestly cannot remember a single day in my life without pain.

I am only able to get to sleep each night by taking Elavil and Flexiril – but they don’t help the pain. My brain is in overdrive when i lay down so sleep is rare for more than a few hours at a time.

Ok – I think i’m done with part 2 of my rant!! Hahaha!!

Thank you everyone for sharing. When I am feeling down, I read your posts and know it could be worse. A week ago today I had an EMG (nerve torture test) on my arms and legs to determine how much nerve damage I have in the Lumbar and Cervical areas of my spine, only a little in the neck, but it explains the numb hands and arms. If I had questions that FMS is a neurological disorder, they are gone. The test left all the nerves in my hands, arms, legs and feet raw for two days, then I itched inside my skin for another 2. I am so tired, I need 12 hrs of poor sleep or the pain levels start climbing, and going to a sleep specialist or sleep study gets the Sleep Apnea result-they won’t accept the idea that I have snored all my life. As a baby I would sleep on my belly making baby snores. Also denied is my brain wakes up every time I move from pain. I am an active sleeper so I move all night long. DH says I don’t look bad today, but I just want to sleep. I am blessed, he understands and is my memory and doesn’t complain when he takes care of things-it is fortunate that he is disabled (his back) so he is here with me. I am old enough now that I think about if he should die before me and what it would be like. It is scary knowing I shouldn’t live alone anymore. I have reached the point I no longer care what others think, I use my walker, limit my schedule and live with the resulting isolation. I don’t have to please anyone other than God, and he is pretty accommodation most days.

(P.S. My Fibromyalgia was diagnosed in 1994)

I have so many symptoms, there are too many to list. The thing is, they change all the time and they include all areas of my body and how my system’s work. I know that when I tell the doctors about this, they think I’m a nut. I understand , that’s the way it sound’s but it is all true. I didn’t have any of these problem’s before Nov. 4th, 1985. Believe me …I don’t want to feel like this!!!! I was a healthy, energetic person up untill that date. I want to be that person again. I don’t want to use the little bit of sleep I get as an escape….I want to live again.

To all you non-sleepers, I have been an insomniac since I was sent to boarding school in England at 11 years old. Sleeping pills didn’t work very well UNTIL, wait for it, my blessed doctor put me on Estazolan and it works like a dream, also a very small amount of Seroquel. I don,t care if I’m addicted to them, its a hell of alot better than not sleeping. I won;t go into the other horrros I experience but you all sound very similar but, until now, I didn’t know that pins and needles was a result of FM. Thanks everyone.

My deepest sympathy to all of yiou for your suffering. I suspect that the extremes of winter and summer are really hard on Fibro patientsI I also cannot remember a day in my life without pain. At the moment, my extreme fatigue seems to be better, but of course I dont know how long it will last. One good result is that I have managed to declutter my office! At the moment my biggest symptom is anxiety, intense unreasonable anxiety. I am aware that I am not fun company, but I don’t want to isolate myself completely! A simple visit to the family last week left me exhausted, depressed and anxious. Althought it is sad to hear all your stories, it is comforting to know that I am not alone!

All of the above comments I can relate to in some form. I know I’ve had problems since I was 15, wondered for years if everybody felt as awful as I did when I got up in the morning. I am now 68 and was finally diagnosed 4 yrs. ago, didn’t do me much good but at least the Dr. finally beleived me! My worst pain now is what is called meralgia parastetica, it’s in my outside thigh and just burns, sometimes terrible ‘pin’ pains and the numbness, etc. It is just wearing me down. I had my gallbladder and 5 marble size stones removed and hoped it’d take care of all the heartburn and indigestion, but no change.
I agree, no one can possibly understand unless they also have FMS.

I have a few gripes. One is while Flexeril works great for me, after 2-3 days I get a really bad cough. So I switch to Vicoden, it works a day or two, then I’m awake all nite. Tramadol is useless.

I’m starting chemo Tues. so how do I tell the difference between fibro fog and chemo brain? I need suggestions for a t shirt like I’m fogged out and dangerous, or useless.LOL

To hear everyone venting for me feels so good. To know everything i complain about is real not in my head. yes it is frustrating to hear someone say you are too young to be complaining about pain. My kids do not understand and one thinks i am drug head because taking strong pain med,which cuts it but does not take it away. i never leave house because a trip to grocery will tire me out and flares start up. ditto on the lower back pain of fire ,hip and shoulders and neck and toes. i am a complete mess. I want to scream why is God testing me . it makes me feel good to complain to someone who UNDERSTANDS THIS UNBELIEVABLE LIFE CHANGING STYLE.Simple tasks are so hard. everything you do has a set back. I have a hard time spacing my energy when pain lets up. well thanks for listening. God bless everyone who is suffering with fibro…I UNDERSTAND AND KNOW IT IS NOT IN YOUR HEAD.oh i went to another doctor hoping it is something else and the would not let me finish telling him what is happening to me with him raising his voice that i have fibromyalgia and i will tell you what you need. i went thru the whole rountine of pt which hurts me and know i will not do it. to me it was a death sentence of living in HELL. THANKS AGAIN FOR VENTING OUT AND HELPING OTHERS DO THE SAME

Hi to everyone and hope some of you are having a good day.
this artical rings true for all of us, its sad and depressing to think we cant talk about how we feel. I have learnt to keep quiet about all the pain and the fibofog and well all the rest. I have had ppl laugh at me, raise their eyebrows at me or the best one just ignore me altogether. As a teen it was harder my mum took me to the hospital once because the muscle in my hip would not stop cramping and the pain was unbar bale the dr told her nothing was wrong and that i was putting it on, so as you can guess i could never talk about any sort of pain again without been told stop seeking attention. I dont know anyone who has fm so i have no one to talk to or who understands and dosent think iam crazy. This artical let me see iam not alone we all sit quietly with a smile on our face to keep the norms happy.

I’m so glad you posted this so I can vent. My husband gets tired of here it and says your getting older and it’s just pain with aging! Ugh!!!! I wish he would get it. I have neuropathy in my feet along with fibro and I called Friday to get my pain meds refilled. The office is closed till Monday so I have to cut my pills in have to make it through the weekend. My upper and lower back hurts and I can’t sleep. My feet hurt and it makes it difficult to walk. I feel like a bus hit me. I would love to go outside, but the heat makes my pain worse and makes it hard to breath. This spring and summer is awful. Does anyone have trouble with breathing with this stuff??? I have to use two inhalers so I can cough up the stuff that seems to get stuck because my mucus is so thick. Is this something that goes along with fibromyalgia? All I want to do is lay down and curl up in a ball and not move, which by the way makes the pain worse.
I have to go grocery shopping today which I dread because of how I feel. I just wish this all would go away.
Thanks for listening to me. It helps to have someone to vent to.

Thank you for a place to vent.
I had an op 25 years ago that triggered off my fibro. I was officially diagnosed 16 years ago by an endocrinologist who said it was probably the Scoline they used in the op that I was possibly alllergic to. Who knows. I had to stop work 12 years ago. Everything you all say is the truth. This disease is madness. Can’t walk. Rheumatologist says she’s going to cure me. Now on self injected Humira, a biologic. What the hell is that?? Am I injecting myself with unborn foetus’ cells? 6 injecs later no change? What happened to rheumys gay, sprightly promise? Whole body feels like really bad toothache. I am so jealous of people who can walk. Have to reprimand myself when I cry.

Adrienne – re hip – you need a chiropractor – and a good one
Check out Pettibon system and see if there is anyone working this system in your area – most of them are on the West Coast unfortunately.. IIf not Pettibon – any adjustment should help. I was blaming all my symptoms just on fibro (And so did my reumatologist) – only to discover later that osteo problems and muscles/nerves go hand in hand together.

I’m tired of hurting. Tired of being tired. Tired of not being able to sit in one place for longer than a few minutes without every muscle screaming at me. I’m tired of painkillers. I’m tired from lack of sleep. I’m tired with struggling to get the smallest task done and knowing that even if I manage it, I will pay for it for days afterwards.

Sorry to be so negative – it’s how I feel today.

I am one of those that clam up about my symptoms because I feel nobody understands not even my GP. And these day it seems that my prof have to many patients to see to and no time to really listen to your problems. In short I don’t want to see doctors anymore. For months now I have this really bad spasm in my chest it feels like having a heart attack.
I have tension headaches, my legs burn with pain and not to talk about the pain in my face even my teeth aches. I am feel really desperate these days.

Thank you for letting us vent. I too have been suffering from very bad back pain that started going into my left leg. It’s letting up now that I’ve started a new medication. I am blessed to have a wonderful support system of family & friends but I just don’t want to always weigh them down with my pain. My husband of course sees it everyday so he’s a part of it. He never complains though & will even text me throughout the day to make sure I’m doing well. He respects my adversion to telephone conversations, hence the texting. I really want to thank you for this website. It has helped me immensely over the years. It’s like really good group therapy/ resource for new ideas/ thank God I’m not crazy site. Take care everyone. In the end it’s the only body we have.

I enjoy reading these. I feel that i am not alone or crazy. I have all the symptoms i have read on here today. When i don’t sleep (which is alot) i’m hurting and tired. When i do sleep i am tired and sleepy. I do not take my Hydocodone 10 because it does not help. I take it some but i have tried taking it at first sign of pain and instead of every 4-6 hours i go 2. lately i have not taken it much. The last month my hands,hips back has seen the most of it. Tomorrow could be anywhere. My legs either hurt or are restless every night. Sometimes i just want to cry but the tears want always come. I am going to see a new doc this month. I have been wanting to see a new one for a good while. I have had this since 1998. I really doubt he can do anything different. My friend works for him and she talked me in to seeing him for symptons my rhume. ignores. sometimes cannot sllep for pain top of hip to foot. Roll over it starts on that side. I think its a nerve and since thats what fibro is about they r not a whole lot that can be done. I really do not want to take more meds. I have enough. Thanks to all of you.

First of all-Casey, you’re 22. I’m 59. Lose the boyfriend. You may love him, but he apparently treats you like a wart that bugs him sometimes. There are other, nicer, more understanding people out there, and, again from experience, being alone is better than being with an asshole. Nothing about our problems is helped when our loved ones don’t believe and support us.
In March 2011 Dear Leader wrote The Monster List of Fibro Symptoms. I printed it out, checked the ones that I have, and am never without it. It has about 70 symptoms, and I have over 40. I make everyone I interact with read it and see what I’ve been going thru, not just in the fifteen years or so since I was diagnosed, but most of my life, one by one til they all added up to this.
Does anyone know how common it is for people as young as 12 or 13 to get this? My granddaughter is 13, and she’s showing a lot of symptoms. I’ll just die if she gets this. I really will.
Carry on.

I wanted to say thank you for listing your ‘what’s making me less-than-wonderful at the moment’ symptoms with us. This is all stuff that I am dealing with too, and it is nice to have someone that understands.
I look forward to your articles each week.

I dont care what anyone say, not even my children believe on my symptoms
I am always tired from the moment I get out of bed until I got to bed at night to TRY to fall sleep.
I ache all over all day long, I can hardly walk or bend, my memory forget about it . I dont wish this sickness on anybody.
For ten years I complained to my Dr and he never paid no attention, in one year I fell 9 times since I have no balance at all.
What else can I say/

Sincerely

Mavi lopez

My other daughter feels like she has Fibromyalgia, too.
It struck my 16-yr old, and she had been diagnosed with malaise at age five!
Then we learned that female problems and this go had in hand.
We all have those.
Fibro has me calling people by wrong name, I feel that I am demented, because I cannot walk enough to keep some circulation up there, because Nevada is so HOT, and my sleeplessness has me staying awake, so get up at 11:30, so do not get enough done before night, and I need to walk with husband because of my bad knee. Feet and legs have been swelling because of the heat.

I am having so much pain in my hands, from arthritis! Ten times as much pain as necessary! Got to do gardening! Cannot drive!

The brainfog is the worst symptom for me. I just quit my job because my employer had installed a new computer system, among other changes, & I’m unable to learn complicated procedures anymore. I was working mega overtime and not sleeping due to the stress. Normally, I sleep very well, thanks to amitriptylene. It has been a wonder drug for me. Also, because of sitting for 12 hrs a day, I had gotten extremely stiff. My doctor put me on FMLA for more than a month. After going back for a few weeks and things were still just as bad, I sat there & wondered why I was still trying. I was on antianxiety pills to sleep & wearing a biteguard because I had already cracked 3 fillings. I was making mistakes, but I knew they wouldn’t fire me because of the FMLA. If I could have waited to be fired at least I could collect unemployment. Now besides having no income any time soon, I also will have to find my own health insurance.

I was diagnosed with fibro 24 years ago and would like to sound off about a work injury. I’ve been for this company 10+ years and they admitted the cause of my accident. However, because I’m a devoted employee and used to pain, I wasn’t thinking about protecting myself. I went right back to work and they turned around and used the fact that I have fibro against me … stating that I’ve been treated for pain in those areas of my body for years so this is no different! Can you imagine how I felt? So now I’m dealing with multiple herniated discs on top of everything else.

I take Cymbalta and Gabapentin and those seem to control my physical pain pretty well as long as I don’t overdo it, but *nothing* helps the brain fog and exhaustion! I was forced to take a medical retirement at the end of April after my FMLA ran out (I also have chronic migraines) and while I’m lucky that my application for SSDI was approved quickly, it is the doorway to true poverty. My COBRA insurance pmts are just over $600/month and my mortgage is $500/mo. I receive $1096/month from SS. I’m pulling money every month out of my IRA just for utility bills. When I remember. I almost feel like I have ADHD. I have all these things going on in my mind and I can’t remember any of them when I try to think what I need to be doing. So I sit and stare at the television and even then I couldn’t tell you what I’ve watched. I make lists of things that need to be done but so many of them are phone calls that need to be made and for some unknown reason I have an aversion to talking on the phone. It makes no sense after spending a lifetime working in offices! I was an accountant and now my own finances are such a mess it makes me embarrassed to tell anyone or ask for help. I’ve isolated myself to the point that the only people I see regularly are my grandchildren and they don’t judge… My two sons have no patience at all so I just remain silent when I’m with them. Is this all fibro? It is horrible!

This is great! My friends always come to me to vent!!
My so called problem has been with me for a little over 30 yrs. I have FMS, CFS, DDD, MPS osteoarthritis, and I have waited 10 years so far for a new right hip. The day I went to see the surgeon we had it all set to do my hip in 6 weeks! Then he asked me if I used street drugs, so I was honest and told him I used pot for my pain (only a few times) and as soon as I said that he told me that now I have to be (clean) for a year before he will do the surgery! That floored me! I thought for once at least my hip would now allow me to walk without or just sit still without its constant sharp to dull pain! IM 53 I live in CALIFORNIA! I can go to the store to buy it and he wants to extend my pain and put my body threw this for another year??!! I already can’t stand up straight, my lower back is building a muscle that is bulging because im putting all my weight on my left leg! At times it feels like it is going to pop out of socket! I wear to Bledsoe braces, one on each knee because of the pressure I have to put on them! With this bad hip it’s really hard on my DDD (disk) in my lower back! This is just for the osteoarthritis! The FM, MPS (myofascle pain syndrome) excuse my typos! CPS, CFS etc. My dr has all these listed! I have been on every pain med! The last few years I have been on 80mg oxycontin, with dilaudid 4mg for break thru pain. With that I also take both woman’s hormone meds yes they do help with pain. Valium 10mg am and pm and that’s also for pain, 800 Motrin and nortriptyline 50mg. That’s my am cocktail! My friends don’t understand how I function! My short term memory sux and its totally embarrassing!
I of course have chronic dryness in my eyes and mouth!
Ok, im done venting for now! Thanks for reading!
. FEEL BETTER MY FRIENDS! NANETTE

This is for people that want to post here! I spent alot of time spilling my guts out only to find out after I hit the “send” when I was all done venting then it says to me that we have to have MORE THAN 10 CHARACTERS AND NO MORE THAN 2000 CHARACTERS! I HAD TO TAKE OFF HALF OF WHAT I WROTE!

REMEMBER!!! NO LESS THAN 20 AND NO MORE THAN 2000 CHARACTERS!!!

. THANKS!

I really appreciate your articles. I just can’t find what I’m looking for. I started having seizures about 3 1/2 years ago. I was diagnosed with Fibromyalgia in 2011. After reading several items regarding the relation between Fibro and gray matter of the brain, my question is – Could my seizures be somehow related to my Fibro? I know there are several neurological links, but could find none with any correleation of the two. Does anyone else have these problems? Anyone have any further info? Thank you again for the weekly info.

Thank you Adrienne, you do so much for us all –

Richard, I agree completely w/you – I think at least some origin of CFS is immune system-based – and our systems have gone haywire!

Almosthuman – Diet definitely can make things worse for me – I have multiple food allergies, and the list keeps growing. Soy, milk, eggs, corn, corn syrup, – w/in one hour, it ll fee like am coming down w.the worst flu. Watermelon’s a new one. Must eat protein for breakfast, no huge amount of carbs before noon. No caffiene or stimulants outside of small amounts of vitamin B throught the day. Eating seafood is like playing russion roulette – can bring on migraines. The list goes on.

In fact now finding eating almost anything between breakfast and dinner is causing energy problems – people think I’m a royal pain to have a meal with!

Also multiple chemical sensitivities – smoke of any kind – silicon, plastic, latex – many OTC skin creams can pack a whallop – now use Emu Oil. Wearing plastic shoes or watch bands w/in an hour – rashes and CFS bouts – can’t even have a phone protector case (plastic). If a nurse/doc wears latex gloves – will pratically knock me out for the day. Being around dust, grass – down for the count. Perfumes, heavy scents, candles, no no no! I have to constantly moniter every waking moment.

PS, this won’t happen – but when are airlines going to start telling people to stop wearing tons of perfume on airflights, for those of us who are allergic!

Lu Anne and Gaila –

I can sympathize! After years of working in ligh level IT positions – my brain fog was so bad – I was making mistakes and couldn’t learn new things at all, or plan or piece together anything. Instead of waiting to get fired I left. No one understands. It took 2 years to get SSDI, but it’s only paying about 50% of minimum costs, and it’s only good for anpother year and half, my IRA is gone and credit cards maxed out due to two years off and trying to make up costs.
Lu Anne – see if you can get on SSDI and medicare.
Gaila – I used to be on the phone 24/7 – now avoid long calls now like crazy – all my old friends think am being snobby but just can’t be on the phone any more, complete exhaustion communicating w/most people- I tell people talking on the phone is like running a marathon for the normal person. Have tried to get most people around me to txt, much easier to keep in contact that way. I have to make a weekly 30 min call to an elderly relative who can’t text – practically go into anxiety attack over it every week- very stressful to be on the phone that long, and also in a nonstop monologue, since he doesn’t talk much.
The fun doesn’t stop w/this!

I NEED ADVICE:

I’ve had CFS 17 yrs/ Fibro 14 yrs. I too have to severe lower back/left hip pain, neck-shoulder, midback tender points throbbing, IBS, literally constant nausea…..ETC ETC those are the one’s bothering me the most lately…and headaches, migraines. Every time I wake up I feel like I have the worst flu I’ve ever had.
I live in a large city and have been told by many many people that this chiropractor in town can relieve Fibro pain.
NOW, I’ve ALWAYS been a skeptic. I’ve learned not to trust anyone who says they can help. But all my friends and family are encouraging me to try this guy. I’ve been twice (at $500) and I’m not better. If anything, I have a “new” back pain. Everyone says it should hurt if he’s really re-aligning my back. This guy says my neck and back are crooked from an injury. ?? I was in a car wreck 3 months before CFS but I got sick from CMV. (I was tested by an infectious disease specialist)
My OWN MOTHER told me to not be a quitter! So tomorrow I’m suppose to pay another $1000….to continue his care for the next 3 months.
I’m on disability! I’m not rich. I don’t know what to do. All I know is this pain is getting the best of me.
Any opinions???

TO CASEY; age 22

It breaks my heart that you’re so young and dealing with this. I’m 52 now and just as miserable. Had to stop dating. I too don’t get pain pills. So I drink when the pain is so bad all I can do is cry. I tell people I WISH I could be an alocholic so I could drink all the time!!! But my stomach won’t take it.
I don’t know what to tell you that would help, because opiates don’t touch my pain. They just numb my brain. Maybe they’ll find a treatment in your lifetime. Just know we’re all in this together…..don’t give up.

Hi. I normally don’t leave comments, but all the things you were complaining about sounded as if you were speaking for me. I too have been enjoying your articles in my emails, because I can read them and the comments from the other sufferers. I agree in that it’s hard to talk to folks that really can’t grasp what we go through. Thank you and keep them coming.

Bowel issues: If you haven’t gone down this route, please see an allergist to test for food allergies. I thought I had celiac disease because when I was put on a gluten-free diet, I felt much better. BUT, the blood test was negative and the colonoscopy came back negative. I was about to throw up my hands, but then I got checked at the allergist.

I had an allergy to barley.

And the strange thing was, I’ve heard that you often crave the food you’re allergic to. Only now can I look back and laugh — remembering eating beef and barley soup and saying how I LOVED it… but then wheezing afterword. I didn’t put it all together except in hindsight. Good luck to you!

PS – Food allergies can cause all sorts of symptoms. In my case, it was IBS-like bowel issues, mild asthma inflammation and mild swelling of the eyelids, sinus cavity and throat. It was pretty mild, so I used my inhaler and… I was just fine. So, I didn’t link it up. If you DO have a food allergy, educate yourself by searching online. I found out that barley is in many foods as “malt flavoring” or “caramel color.”

i have read many post here and they do help me. i have never written a post but have thought about it many times. i have suffered with fm for 12 years and over the years it has gotten worse. i also have diabetes,heart problems nueropathy high blood pressure ddd in my neck as well as bone spurs. i also have osteo arthritis in both knees and handsas well as bursitis in my left hip. i have acid reflux and stage3 eshpagatis not to mention 5 or 6 bouts with duverticulitis a year. i have also had 5 surgeries in 1 year. i am ibky 44 years old but i feel 80.the thing that bothers me the most now is that i feel like a burden to my family. i am no longer to work and i have worked since i wwas 14 years old,i am no longer able to take care of my home and family at the level that i would like to. i have a very understanding husband but i am always worried he is going to get enough of me and my bizzare symptons.i actually feel guilty for bieng sick most of the time. i just want my life back““

thanks so much for your articles;they are right on! Some ladies in my area with fibro/cfs/etc have recently started a private facebook group so we can vent to each other without the problems of going to an actual meeting. “talking” to them, having them lift me up when I need it & visa versa have helped me emotionally, & we give each other ideas that have worked for us & might work for others. thanks again

My heart is aching as I’m reading these posts. I liked the post that said we will be considered heroes, warriors when FM and ME/CFS is finally acknowledged in the future!
To CORRA – In London Ontario there is a Fibromyalgia Clinic at St. Joseph’s Hospital and a Rhuemetologist (sp?) named Dr. Manfred Harth who is very involved with FM and CFS I believe. I will finally be seeing him next month!
To TAMIKO — Has anyone ever mentioned something called “Essential Tremor” about the head nodding? I have Essential Tremor in my hands and arms, legs and body… I also know it can affect the head and voice as well.
This week has been rough for me.. All of my aches and complaints have been mentioned in the previous posts… of all of these diagnoses the hardest part is for me to accept them as part of my life now.
How does one go about accepting these drastic changes? Any suggestions and / or stories of how you accepted these into your life would be greatly appreciated.
Thanks for listening… DA

The summertime humidity, combined with my new, high-efficiency A/C, is intensifying my pain GREATLY. A good night’s sleep no longer helps much, either. In addition, I’ve recently had to go off my Celexa due to new FDA regulations and am on low-dose Zoloft – due to my A-fib. Can’t find Tylenol Arthritis Formula anywhere – have they quit making it??? The generics just don’t cut it. Can’t take NSAIDS.

I’m going NUTS with the fibro fog. I’m trying so hard to hold onto my job, but with all the multi-tasking that is required, It’s a real battle every day. I’m making mistakes I shouldn’t be making, can’t carry on a conversation because words won’t come out of my mouth. My sisters are so worried that I’m going to have Alzheimer’s that I made an appointment with my GP for next week, but he will just say to ask my Rheumatologist………..it never ends, does it????

My pain is currently mid way down my back on the right side and sometimes lower. It goes around my ribs to the side. I can’t lie on this side at night. I CANNOT sleep unless I taking a sleeping pill. Right now I am taking a 1/4 of a 5 mg tab which is low. With this I get 2 hrs., wake up, 2 hrs. etc. My mind will not stop. I am obsessing over everything and I feel panicky a lot. I think of my life never being normal again and it scares me. It’s passing by and I am not enjoying it. I can’t work and I’m always so tired. I don’t take anything at all for the pain because everything seems to make me really sick or worsen my pain especially Tylenol type meds. Most days I don’t know where to turn or what to do.

There is so much to complain about I wouldn’t know where to start. But my Mother has also been sick for almost a year and that makes everything so much worse. We have to move her out of her house of 35 years and her husband is in a nursing home that she is paying for ay $4,000 dollars a month. Her money is running out and I’m getting more stressed.
I don’t know where I get the energy to take her to Dr. appointments and looking at new places to live. My stress level is way out there, but hers is even more.
I hate that I can’t just be a normal person and be there for my Mother in the way I want to be. I feel less of a person. That it’s some how my fault.
I’m so sick of being sick!

I posted earlier, but reading posts submitted after mine made me want to add something that related to them. I’ve waited 25 years to hear those magical words, “It’s not in your head, you have CFS”. I was diagnosed by a top CFS specialist. I thought this would finally validate my illlness in the eyes of non-believers. NOT!

Upon returning to my GP (who is a non-believer) for my first visit after seeing the specialist, I expected him to comment on my diagnosis. He said nadda. I was expecting something like, “Oh so you do have a chronic illness” or at the least a little bit of empathy. NOT!

Well, when I thought it couldn’t get any worse. My 28 yr. old daughter, who doesn’t believe in much of anything (no such thing as drug or alcohol addiction, post-partem depression, bi-polar,…) was more negative than before. At first, when hearing of the thorough exam the Dr. gave me (I was supposed to be there up to 3 hrs. and it was 5 1/2 hrs.), my daughter said, “Wow, that’s a real doctor who cares.” When I told her I was diagnosed with CFS/ME she said, “You’re going to use that as an excuse to lay around more.”

I don’t think she will ever how much she hurt me. I was crushed!!!

Just wanted to thank you for your articles and for all your hard work in understanding and find solutions for us who battle this illnesses of CFS/FM, etc. They have been so helpful. You are one of my main resources on FM. I too have suffered with FM and it is really been a test of my faith. Some days are better than others and every now and then I will have a day with no pain. My heart goes out to all of you. I hate this illness and the many others. I can’t await the day there wont be any more sickness. I have learned alot being ill and I hope that they continue to research and find answers for us. Meanwhiles just do what I can and pray alot. Blessings

I know this much after many years with this illness: 1. any physician that suggests it’s in your head? Leave. Tell them not to bill you. THere are too many specialists and docs who will treat symptoms and support what a specialist does, not to mention read legitimate research you bring in when wanting to try something.
2. Family, ‘friends’ that treat you as if you have something not real, minimize it, etc. do not need to be part of your life. Imagine if it happened to them!?
3. Intimate relationships; anything other that a supportive, loving, caring partner is not good enough. I’ve been in a relationship for a year and a half with someone. I told him about my illness and the possibility that it could get ‘really, really bad’ (tho I didn’t really believe that could happen again). Well, a few months in, it did. Crashed for a year not and he couldn’t be more supportive. Yes, you can manage on your own, I’ve done it, been in hell. Asking for help was new for me and I’ve learned to do il. . Being with someone who is less than committed and caring and 100% in is toxic, and when you live trying to please them, trying to do more than you are able, making the disease worse, that is unacceptable, you deserve better,

I look forward to the info..I have both Fibro and CFS, diabetes and others…I’m far from remission..What bothers me is that with the drugs out there for us, I have the rare side effects and can’t take any of them..
I live on DLPA and 3 Advil 3Xs a day plus all my other drugs..The basic side effects are enough to scare me from taking them let alone the rare ones..I value my life to much to screw it up even more..

Like everyone else, I have a laundry list of symptoms and associated illnesses. The list is never-ending, and it seems that something new is added each day. The following are things that have actually been said to me, by family, friends,and even strangers,

“Oh, I know exactly how you feel”, and then proceed to tell me how their illness/ache/headache etc is so much worse than mine. (I love when they say, “I had a horrible headache, but I took an asprin and it went away” Really? I should be so lucky. At least they know there is an end in sight for their pain.

“My mother/aunt/friend had FMS/CFS, and it went away, so your’s will too if you work on it. All you need to do is…” Don’t you think I’ve tried everything? Or do you think I enjoy living this way? Why do people assume that they have the right to judge, diagnose and prescribe ‘cures’ for this illness?

“It can’t possibly be that bad. You are exaggerating for sympathy” Yep, that’s me. All I’m out for is sympathy.

“It must be nice to retire at 46, and live a life of leisure. How can you afford it?”. Yep, it’s fantastic. I get up each day and plan my leisurely activities. Like, do I have the strength to shower today? Or even watch t.v.? As for my finances,(or lack there of) It’s none of your business. Unless you plan to pay my bills.

And my absolute favorite, ” You have plenty of time, why can’t you babysit/shop etc for me? You aren’t doing anything else. You only care about yourself” People assume that you should be doing things for them, like you owe them something because they have to work, and you are ‘on holiday’ or just scamming the system. (because obviously, if you don’t look sick, then you aren’t)

Why has my life become a debate for everyone? Family, friends, even strangers are ‘experts’ on my illness, but actually know nothing about it. This illness is bad enough, without ‘well-meaning’ people taking it upon themselves to decide what is best for me.

I HEARD WE OUT GROW THIS DISEASE! WHEN???? I am 69 was told finally 24 years ago that I had Fibro. I too have been having low back pain going down my leg. It is helpful to read the articles and posting by others but when it comes down to the final answers we all have to find something that works for us. Sharing helps but we have to keep moving. I have arthritic problems and old injuries. I have found that it is hard to tell if I need to go to the drs or if I just need to deal. I am lucky to have family support, my husband is 7 yrs older than I am so he tries but there are times when he can’t do the things that need to be done and I just have to bite it and do it. My family doesn’t live near us and I try to take care of us the best I can. My Drs are good and know what I try to tell them about so that helps but when It is down to the wire we need to try to do as much as possible. Then sit down and do a relaxation session. I know this is a cruel disease, it just don’t show others how much we suffer. Blessing to all of you.

Long story, short. My symptom list most likely won’t fit in the comment box allowable characters. I’d rather smile than cry so…

I HEARD THAT WITH AGE THIS THING BACKS OFF. WHEN? I am 69, my very supportive husband is 75. I am having a lot of low back pain and it goes down my leg and been getting charly horse pain in upper thigths.. I have a good drs and lot of support from my family but none of them lives near us. So what gets done gets done by us. We have people who do our driveway in the winter and the scouts help us sometimes in the summer but there is so much to do. I find that I have over do before I realize it, and then have to deal with pain. I was diagnoised over 20 years ago but I have been realizing that a lot of my medical problems are related to fibro. I also have a hard time knowing when I need to go to the drs and when its just fibro. Chest pain is the worst, is it my heart of just the usual pains? Remember that moving is good but relaxing exercise is needed. Bless this web site for the information and making us realize that we aren’t crazy just in pain from something we can’t control. Bless us all

Sorry I guess I sent 2 comments sorry about that I haven’t done this before. I guess I don’t mean to sound like I dwell on my pains. I know how much it has helped me to hear from someone else that the pains I am having are like someone elses. Thanks for the place to put your feelings out there. Sometimes just saying it helps.

MY SYMPTOMS ARE PLENTY AND EVERYDAY. I WAS DIAGNOSED WTH FMS OVER 10 YRS AGO. I STILLGET NEW PAINS, IGET SO DOWN ABOUT IT SOMETIMES, THE BRAIN FOG, FORGETTING WHAT I AM DOING,NOTES TO MAKE A NOTE. ITS NOT PRETTY, BUT I GET UP AFTER A SLEEPLESS NIGHT AND JUST DO THE BEST I CAN. UNTIL I CANT DO IT ANYMORE

I worked hard all week getting ready to have 19 people here today to swim and for dinner. I could barely walk and my SIL has the nerve to say I need to do more. I was so upset I went to our bedroom and cried and never had any dinner.
For all of those who get You don’t look sick…..say You don’t look stupid.

Hello everyone. It’s very hard when you don’t have help, but more hart broken when you have people around you and you have to bage for help like my kids(17and 21), as much as tried to teach them caring and responsabilities they don’t get it. My husband just had 5 neck disk infusion done the last four days ago, and Iam running nuts and depressed they are no help unless I yield at them and my husband is having a horrible hard time, we can verly sleep due his disconforts, can anyone imagine how Iam am feeling right now, because if he can sleep neither do I. Luckly for me Iam in medical leave for cople weeks, but I supposed to go back in two more weeks, help me God.
I am out due to tendonitis, and supposly metatarsal stress fracture, which I supposed to be wearing a boot , but due to my ups and down the staris I had to kick them off. so therefore my pains starting to come back again. Sorry for borring you guys but I need it to let some go. Thank you to whom ever is listenning.

I am a 33 year old woman who has been in incredible pain since April 21, 2011. I woke up that morning with my hands in debilitating pain. When I got to work using the computer or writing was impossible. Since then I’ve been on a long journey. The last year has been a diagnosis of carpal tunnel and degenerative disc disease in my neck. I’ve done every treatment/test in the book. After failed surgery on my right hand on April 3, 2012 someone recommended I see a rheumatologist. Blood tests have ruled out everything and one very quick & painful tender spot test later: “Oh, you have fibromyalgia.” I thought I was losing my mind the last year. Crazy insomnia, anxiety, pain in neck/shoulder/hands, migraines, sudden gastro issues where before I had a stomach of steal. I’m still off work under WC for my failed CT surgery, but a return to work is looming. I miss my life of running, hiking, camping – every weekend packed with activity! Now I get up every morning and struggle through basic activity. Keeping a food & gratitude journal currently. Take flexeril/klonopin to try to sleep – never well rested though! Thoughts are with all of you xx

PS-I just wanted to add. Since being diagnosed a month ago I’ve read alot – I am in the denial/”I will find a cure for myself” mode. Currently doing elimination diet (no soy/dairy/chocolate/caffeine/tea/nightshade veggies/meat/gluten/grain) in case leaky gut connection. Started swimming in the warm pool at my gym as the usual weight lifting/heavy cardio routine is no longer an option due to my fatigue and pain. Granted I’m the youngest by 35 years or so, but hey it helps most days. Made an appointment with naturopath to get their take. Trying to walk everyday (2 years ago it was 2 mile runs daily) sometimes helps but others I’m so pooped I collapse on the couch. Grateful for a partner to support me and some family/friends across the country who are “concerned,” but feeling very ill at ease & alone re: the financial/work impact. That is enough to generate a panic attack alone. Trying to breath and be grateful. Any other leads or things that have worked for Fibro folks out there? Thanks!

I feel your pain..mine has been high the last few weeks, it is frustrating
it amazing how I try to have fun time and I PAY FOR IT for weeks to come, makes me realize it is best to just stay home.
My hips have been so bad I try the heating pad helps some I am taking lyrica but dont think it is helping much.
Hope you are feeling better today,even if just for a short time and try to keep a sense of humor

I too find the fatigue hard but i have multiple issuse fibro, rls, severe depression. ptsd panic attacks insomnia so i often wonder which came first kind of like the chicken or the egg. pain meds help yes but they never eliminate pain completely so i learn to live with varying levels of pain. i am getting counseling for the depression and ptsd which i think helps. but while going through it there are sessions that definitely make everything worse. i cannot remember the last time i slept and felt rested in the morning. some days i just want to scream my head off
I have tried to focus on the phoenix bird as my symbol in order to watch my rebirth as i grow and understand more about my conditions and sypmtoms

I have commented about this before but it needs repeating. I dislike the term “Fibro Fog” because it makes us sound like we are a little ditsy when that could not be further from the truth. I always need to know “Why” something happens to me and I did believe once that the lack of sleep,pain and medications were the cause of my memory loss and my ability to solve simple equations. I had done lots of research and found a more solid explanation and then my Aunt who works for a doctor sent me this booklet that is sent to only Doctors. In this book it backed up my finding – It shows brain scans from normal healthy woman and woman with Fibro and the differences are clear. One study claims that the “Virus” that lurkes in us is eating away at our grey brain matter. Sounds a lot scarier than “Fibro Fog huh?’ All I know is I am scared because I have gotten worse despite the many different puzzles I do to try and keep my brain healthy. The Brain is like a muscle and can be made stronger by exercising it. Well that is all I really know but I know it is more than just a Fog….

if you haven’t already, get tested for gluten intolerance- if your doctor doesn’t think its necessary, take yourself off gluten-wheat products completely-it has made a huge difference for me-took about two weeks to start feeling it, by two months, i’ll never go back to gluten

Thank you. We are so very brave to keep going day after day and to even laugh sometimes when we crack an egg and put the shell in the pan and the egg inself in the trash.

I too look so good; but I feel so bad. Yet, something inside of me refuses to give up. May we all hold on regardless of the days that the body may get up without the brain, or the brain may function and the body refuses, or when both are in the pits of hell itself. May we push forward dispite the misunderstanding of friends and family members and loses of jobs and sustainable incomes.

So glad that we have each other; maybe some of us will be guided to make a difference in some manner. Regardless of how fatigued we are, how confused the brain is, how tremendous the pain maybe in the neck, shoulders, thighs, may we never, ever give up. Namaste

How do you deal with a spouse that doesn’t want to hear about your ailments? He actually tells me that ME being tired all the time annoys HIM. I was so mad I asked him what the hell do you think it does to ME? I am so over people acting like I should GET OVER IT! If I could I WOULD! I feel so all alone, and I imagine that others feel the same way. Just was wondering how others COPE? I sometimes feel like giving up, but I am a strong person so I won’t let FIBROMYALGIA rule or RUIN my life!

Thank you. Thank you, thank you! I have dealt with this since I was 15. It started with fatigue and feeling like I had the flu all the time AMD headaches that would last for days. Since I had my daughter 6 years ago (I will be 30 in December) things have progressively gotten worse.
It all went down hill wheny muscles became so tense on my neck and shoulders that my left arm went numb. I know have severe brain fog, constant aches in my lower back, hips, neck, shoulders and arms. I’m always tired, and depressed. Some days I feel like I am clinically insane. My GP has given up on treating my chronic pain and referred me to.a pain clinic after I requested to be referred to a rheumatologist. The pain clinic is a joke. They don’t believe in fibro. My rheumatologist however was the one who finally diagnosed me after a large round of tests were done. I force myself how to work a full time job. Unfortunately I can’t afford not to work. There are days where I just want to lay in bed.and cry because I ache all over. My boyfriend doesn’t understand what is going on with me and complains when I never want to.do anything. I’m currently on cymbalta, Norco, norflex and naturally the pain doctor wants to do more injections…although I explained to him that I had an allergic reaction to the last one.
Ugh, this stupid disease has seriously impaired my quality of life. I don’t have the energy or patience to enjoy my beautiful, brilliant little girl’s childhood.

Hello,
I have been dealing with Fibro, chronic pain fatigue, body image issues just self worth in general… for six yrs now. I have lost so much due to this condition, sometimes I feel like giving up. I worked really hard when I had a hysterectomy in 2010 due to chronic endometrosis. I finally was able to get a job and kept for 2 years now I got put on diability due to the pain and my employer let me go one month into disability, they also cut off my insurance, so now I’m without insurance. My weight has went up by 50Lbs, I fell like I lost my life once again and I’m so angry! I have done what the doctors have said and beyond and I’m looking my life all over again. I really feel hopeless and lonely. I just wish this pain would end or a cure would be fantastic! I dnt know many people where I moved to so my fiancee could go to law school. Thank you for letting me say what I have to say.

Hi, I just wanted to say thanks for all these comments, and for giving me a place to vent! This page has made me realise that In not alone, even though it feels like it sometimes. My health troubles started about 6 years ago, and after about 3 years and a lot of trips to disbelieving doctors I was diagnosed with endometriosis. I was suffering a lot of pain / bladder bowel and what I now know are CFS symptoms, but after a couple of laporoscopys, 18 months off work I managed to get my life back. I got a new job but illness started creeping back in again. I was taking a lot of time off work, and again doctors told me I was fine, and that my immune system was weak from endo and it would get better. I carried on, and I managed to be in work for 2 years. For the last year I felt like I was draggin myself through life and never felt well. I wad exhausted all the time, and sleep didnt help, so I was cancelling or not making plans for the weekend, just so t hat I could rest as nd keep working. When I did manage to drag myself into work, I was a mess and couldn’t concentrate, and it was taking me a long time to do the simplest things. It got to the point about 3 months ago where I couldn’t cope anymore and kept breaking down into tears t through exhaustion. It took 3 tearful visits to my doctors armed with my work sickness records and family members, and many more blood tests for my doctor to finally diagnose CFS. I’m now signed off sick again, and worried about losing another job. I’m just so fed up off having to fight so hard to get people to believe that I’m ill, and I can’t believe I’ve lost my life again, after fighting so hard to get it back last time. I just hope that one day soon somebody will start to understand this horrible illness, so that we can get the help we need and get our lives back. Ps has anyone else noticed the contraceptive pill being damaging to their health or is that just me?? Thanks again for this page, it has really helped me get through

I am a 65 yr old lady.I am so tired of hurting.Dr has told me for several years i have Fibro.But didn’t to belive it.I also have IC of the bladder.Fibro goes with IC a lot.But my question is,why do I hurt more on 1 side.Even my right breast feels like needles sticking me .Had a mamogram,it is normal.

Hello .a few years ago I hurt myself at work.I have a pinched nerve.a couple or vertebres leaking and one almost empty.for a while I couldn’t raise my arms .well now I’m having trouble walking.I’ve. Had nerve tests.bone density tests.I’ve had x-rays I’ve even been through the tube several times .but every test is coming back normal .the pills don’t work at all I haven’t. Had a good night sleep in months .my left leg throb constantly and thepain never stop. I have no clue what’s wrong with me .I’ve had second and third opinnions and they all say nothings wronh. Even though. They see I’m having trouble walking

MY HUSBAND STEP MUM HATE HIM SO MUCH
My man died 6 weeks ago after 12 month illness where he required increasing amounts of oxygen. I was told 6 months previously that he was about to die and we moved heaven and earth to get him home from hospital. My wonderful strong man carried on for 6 months despite what everyone said. I stopped work and we spent nights and days together mostly with me watching him almost suffocate to death every day. one day in September when there was no one else around I lay down beside him and fell asleep, when I woke up he had gone. I never believe that my husband death was natural..cos i know those that did not want his progress, every night and day i always cry i fill like killing my self because things where hard on my side, my husband family throw us out of the house me and my children where on the street begging for food and water..cos no money any more. one of my friend that i have not see for a very long time saw my on a street and she called my name, when i turn i was an old friend of mine, i explain every thing that happen she gave us accommodation and told me my husband death was not natural she told me i should not worry she is going to help me, will contact Dr Opingo who salve family problems i explain every thing about my husband to him and he said he will help me know about the death of my husband i was very happy that very day…cos i no something was behind my husband death and i see who is going to help me out, Dr ask me to send my husband picture, surname, and his name i did every thing immediately. After Dr Opingo have use the information i send him, two weeks later my husband step mum confess that she was the one that kill my husband through sickness…i am so happy i am free because the family believe that i kill my husband to take over the properties. thank you once again HELEN my best friend for introducing me to Dr Opingo you can contact his email if you still need his help alterofcandletemple@gmail.com