©2018 WebMD, Inc. All rights reserved. eMedicineHealth does not provide medical advice, diagnosis or treatment. See Additional Information.

Fibromyalgia

Question:

The symptoms of fibromyalgia can vary greatly from patient to patient. What were your symptoms at the onset of your disease? Submit Your Comment

Comment from: Darlene , 65-74 Female (Patient) Published: September 11

My skin hurts to even touch it! Sometimes I just want no one to touch me, because I wince at the pain I feel. Sometimes my arms and shoulders hurt so bad I don't want to even lie down, I feel bruised all over, as though I had been in a fight, and I was the punching bag. Till I was diagnosed with fibromyalgia I always thought I was just crazy and that, somehow I was just imagining that it hurt so bad, because I didn't do anything to myself and there was no reason to have this pain. I couldn't explain to others.

Comment from: DOUFLYFISH, 65-74 Male (Patient) Published: April 03

I have had fibromyalgia for several years. Four years ago my sciatica nerve started affecting both legs and my feet, really causing a lot of discomfort. I've found relief with a nerve simulator. Also, I take Ambien for sleep, Flexeril to relax my muscles and, Requip for restless legs. In addition, I take hydromorphine with acetaminophen 10/325 for overall pain for osteoarthritis and for a very specific pain especially in the center of my back upon exertion and deep breathing. The only diagnosis I've received is from orthopedic doctors as pleurisy but pulmonary team doesn't diagnose it as same. They don't know what it is. However, my complaints are similar to pleurisy, particularly after each ensuing mycobacterium infection which I get often. I'm perplexed as to why those of us who do not abuse medications or really need pain medicines will no longer be able to obtain opioids unless one is on one's death bed! I don't get a mental high, the medication helps to relieve the pain.

Comment from: Penny, 55-64 Female (Patient) Published: June 02

I was around the age of 50 and menopausal. My sleep started to be disturbed by vivid lucid dreams. My legs began to hurt so much after walking only a few yards, and I suddenly became so fatigued I could hardly think. Of course my doctor put it all down to the menopause, yet I knew women didn't fall apart at 50! The aches and pains began to occur all over my body. Some days I felt sore all over. I was finally diagnosed with F.M. 10 years later. Now, after trials and tribulations with many and various treatments and pain killers (not!), I have found relief with Pregabalin and Tramadol with Aspirin/Caffeine. I have found that Tai Chi is most beneficial for gentle stretching and exercise, along with true relaxation which relieves tension in the muscles and the mind. I feel so much better and more in control today, at the age of 63, that I am enjoying a younger lover after 15 yrs of celibacy. Says it all really!

Comment from: prayingforamiracle, Female (Patient) Published: May 07

My fibromyalgia started many years ago and I didn't know it. I always complained "my skin hurts". The only way I could describe it was it felt like I was sunburned and the slightest touch would hurt. At the same time, I had terrible problems staying asleep. I woke up every hour. I even wrote down the times I woke up one night to give to my doctor. They put me on Trazodone and it works pretty good most nights. Then about 5 years I had an adverse side affect to Simvastatin where it caused severe muscle pain. I truly believe that's what started my fibromyalgia. First it was in my neck, right shoulder and armpit area. I put heat on it until I was burned and ice on it until I was frostbitten but nothing worked. My doctor did about every test imaginable including EMG, and MRI. Finally I was referred to a rheumatologist and was "officially" diagnosed. I took Nurontin (3600mg daily) and Effexor XR for about a year and all that did was make me gain 60lbs. Now I'm on Lyrica, and still on Effexor. At first the Lyrica seemed like it worked but now it just takes the edge off. I just asked my doctor about Topamax which a relative takes for chronic pain and she's looking into it. In the meantime, I just sit on the porch in the middle of the night when nobody's around and cry because I'm so tired of the pain.

Comment from: dollhouse88, 45-54 Female (Patient) Published: February 23

It's hard to pinpoint a specific time of onset. I've had upper, middle and lower back pain all of my adult life. The fatigue started 10 years ago and then came what felt like 2 broken feet. Numerous blood tests and doctor visits later, I was diagnosed with Fibromyalgia. I think the stabbing pains are the worst, the fact that my feet still hurt is the most depressing. I have 5 children, 4 grandchildren and a wonderful husband, and a little dog. I want desperately to be left alone as it takes all of my concentration to deal with the pain. Then, of course, I get lonely and depressed and can see no point in getting out of bed other than the pain that pulls me out at 2:30AM daily. Medications have not helped. The side effects are worse than the pain. I'm beginning to honestly hope for Alzheimer's or an accidental death so my family has my insurance at least.

Comment from: Tony, 65-74 Male (Patient) Published: October 18

I seem to have all the symptoms but my doctor never said I had fibromyalgia. I've been treated for gout and different types of arthritis. The pain at times is bad. I had a heart operation and a valve replacement so I'm already taking a bunch of medications. The doctor gives me tramadol, four a day which doesn't help much but it's better than nothing. I wonder if this disease ever goes away or I am to expect this till a cure is found.

Comment from: Toni, 45-54 Female (Patient) Published: November 11

For years my body would ache all over and I was always tired. I would have unexplained, constant chest pain. I went from doctor to doctor who said I was fine then in August 2014 was told I have fibromyalgia. I've been taking Gabapentin (300mg, 3 times a day).

Comment from: bealah, 55-64 Female (Patient) Published: June 30

I had severe nausea with body-wide pain that kept me from sleeping.

Comment from: tuliptime, 65-74 Female (Patient) Published: October 13

I started developing symptoms of fibro in the mid-70s: chest pain (costochondritis), pain in the back of my neck when I mopped the floor, upper arm pain, irritable bowel syndrome, an achiness in my arms and legs like I was coming down with the flu (but no fever). And the tender points; my husband thought I was rejecting him and the kids because I didn't want to be hugged or even held close, but it hurt too much. The symptoms worsened with the death of my brother in the late 70s from cancer, so I became paranoid thinking I had cancer or heart trouble. In 1991, I was at the doctor's office with another bout of IBS. She touched a tender point (left rib area) and ordered a complete bone scan. When it came up with nothing, she referred me to a rheumatologist. I have been under his care for both fibro and DJD. I was able to continue working, but I was never able to move up the corporate ladder because I was too slow. Also I took many Mondays off (usually asked for ahead of time because I had a "hard" weekend planned) because I had done too much over the weekend. I worked until full retirement age, but it was hard.

Published: August 27

Fibromyalgia attacked my body more than 10 years ago after knee surgery. I was in a wheelchair for about six months, and I used a cane for another six months. I did not even know how to walk anymore. I fought the fibromyalgia with a lot of pain pills and tears. I was on so many medications that it damaged my stomach lining. Learning to break the cycle wasn't easy because it was painful. It caused tiredness and depression. To this day, I am no longer on meds, and I live a new life with a new career. I have no more depression. It tries to creep in, but I fight it off through prayer. I have bowel problems, this pain that pain, etc., etc., etc. I find that when I help others and talk about it, it brings hope to others. Learning to stop the cycle is a battle. But there is hope.

Comment from: LaLa, 45-54 Female (Patient) Published: January 10

I was diagnosed nine years ago with fibromyalgia. I just recently started having pain in my hands and it is very painful to shake hands or lift heavy items.

Comment from: Wdb, 45-54 Female (Patient) Published: October 18

I was diagnosed 1995 after a lot of very weird and sometimes degrading tests. First they thought I have cancer, then fibrositis. Finally the right doctor realized after the tender point tests was done that I have fibromyalgia. It's a pain that you cannot describe to people. All over your body! You cannot sleep. You cannot think! All that's important is how to cope from day to day!

Comment from: 65-74 Female (Patient) Published: July 18

My story is much like the others. I can relate to most if not all of their symptoms. Mine started 20-25 years ago when a nutritionist said I had chronic fatigue. At that time those were words were never uttered to your dr. It was a FAKE disease. I was just diagnosed with this recently after ruling out many other things including rheumatoid arthritis. My PCP is starting out on helping my sleep. I am excited to FINALLY have a diagnosis that makes sense and a doctor who is working with me.

Comment from: Bluebird9, 45-54 Female (Patient) Published: May 22

I have had fibromyalgia since in my 20s. I think it originated in my neck and shoulders and behind my ears would feel like knots and my jaws would ache. I had continuous tension headaches where as I had sore spots on my head and the top of my head would feel numb. I also had a severe burning in my right hip. Over the years the pain has changed some. Both hips are tender, and I have low back pain, knee pain, shin pain and now I have Morton's neuroma in both feet. I was diagnosed with fibromyalgia last year after visits to several chiropractors; primary doctors; a heart doctor for chest pain and a TMJ specialist and rheumatologist for my arms and hips. I had carpal tunnel surgery on my right hand but still sometimes have pain.

Comment from: julesb, 45-54 Female (Patient) Published: May 03

About 11 years ago I gave birth to my lovely son. Within a day, I had sharp pain in my neck and shoulder, and I haven't had a pain free day since. I developed postpartum depression and IBS within a few weeks, and those symptoms have fluctuated since. My doctors are thinking fibromyalgia.

Comment from: nannyd, 45-54 Female (Patient) Published: January 15

I had gone for a few years with severe pain. I was starting to think it was all in my head when nothing could be found. Finally, after thinking I was going crazy, a doctor gave my illness a name. Fibromyalgia! I also have had trouble sleeping for years. It seems the more sleep I get, the more I want. I seem to always be tired, and it is so frustrating when people don't understand. I was told by my family doctor, that the pain would plateau out and I would learn to live with it day by day. It has been years now, and I still never know where the pain is going to be from day to day. Depression is also a big part of it. I will keep checking on here to see if there is any new information comes out on this disease.

Comment from: allytheangel, 45-54 Female (Patient) Published: January 07

I was involved in a serious car crash in 2001 and although no broken bones, I did have severe whiplash. After two years of tests and some wrong diagnoses, I was eventually told that I had fibromyalgia. It was such a relief to finally have a diagnosis for all the pain. My rather old fashioned GP told me that it was ''all in your head'' and practically threw me out of the office! A quick change of doctors, I found one that actually understood fibromyalgia. My pain has rarely subsided with conventional painkillers but I did get better relief when I was prescribed morphine.

Comment from: Mark9tson, 25-34 Male (Patient) Published: December 28

I have fibromyalgia and went to a lecture at the Oregon Health Sciences University to learn the latest research. They had studied people with FMS when they were exercising & discovered that unlike normal people, FMS sufferers do not show increases in Human Growth Hormone levels when they exercise. This is why exercise is so difficult & exhausting for us. They discovered that large doses of HGH virtually cured this condition. But the necessary dosage would cost about $800/mo. After the lecture I found this product at my local natural foods store and, although the dosage is far less than any prescription, I thought I would give it a try. It took about 4 weeks to start noticing a difference, but then there was substantial improvement. My pain levels are not affected by this dosage, but my energy levels are up dramatically. I am now able to do yoga daily, which does decrease my pain level, and to do cardio workouts 2-3 times a week. Exercise is one of the best treatments for FMS. I have been using this product for 2 years now, including a 4-month break from it to make sure it was still making a difference. A friend of mine researched the formula in this product after discovering that HGH is not legally available w/o prescription. He found from the company that this product does not actually contain HGH itself, but contains compounds that stimulate the body's own production of HGH. Sounds like snake oil, but it does seem to be working for me.

Comment from: Angie, 35-44 Female (Patient) Published: December 17

I was recently diagnosed with fibromyalgia. I have been having symptoms off and on since I was 21 yrs. old. When I was 21 it was really bad for a few months. There would be days I could barely move because the pain was so bad. My symptoms are pain, tenderness, stiffness, headaches, and fatigue. I was recently started on medications, which have helped the pain. I work a full-time job and I am enrolled in college.

Comment from: 45-54 Female (Patient) Published: December 14

It started about 8-10 years ago. I was extremely tired all the time and I felt like someone was extracting all the energy out of me with a giant syringe. I was told at first it was depression. I got tired of hearing that so I switched doctors. The new doc found I had Sjogren's syndrome and sent me to autoimmune specialist. Since then I have had several test and now we know that I have fibromyalgia and Sjogren's Syndrome and Chronic Fatigue Syndrome. I have days it hurts to even breathe, but I keep moving.

Comment from: vegwell, 45-54 Female (Patient) Published: December 08

The pain started in my neck. I tried everything. New pillows, ice, heat. Then it spread across my shoulders and into my upper back. I have had pain other places too, but those are the main areas of concern. Although the pain has lessened over time, and I have returned to work, the insomnia is very problematic right now. I let a doctor talk me into taking an antipsychotic. As it turns out, the drug robbed me of personality and made me gain lots of weight.

Comment from: AltoonaLu, 55-64 Female (Patient) Published: November 25

I was diagnosed with fibromyalgia in 1988. Recently I went back to college to change careers. Imagine my surprise to hear my instructor tell our class of student nurses that fibromyalgia is not a real illness; it is a psychosomatic disorder. I tried to tell her differently, but she would not believe otherwise. So try telling that to my aches, pains, sleep disorders, and chronic fatigue...LOL! I'm now 55 years old. The best treatment I've found for myself is light exercise and a balanced diet. The exercise is the last thing a sufferer wants to do. But, I'm telling you it worked for me.

Comment from: 45-54 Female (Patient) Published: November 04

About 10 years ago, I was recovering from a virus (which may or may not be applicable) and just couldn't seem to start feeling better. I had started to feel achy *after* the virus and it culminated in a day of pain that I can only describe as having been in a car wreck - that's the type of muscle pain I was having. After that initial bout which lasted several weeks, the pain settled into my shoulders, neck, lower back and hips. I finally went to the doctor because the pain in my hips became so severe I was convinced I had bone cancer. During the exam, the doctor pressed on the areas I've later learned are the pressure points. There was only 1 pair of pressure points in which I didn't feel distress when he pressed on them. After ruling out RA, I was diagnosed with fibromyalgia.

Comment from: noreen1313, 45-54 Female (Patient) Published: October 19

My very first symptoms were pain in my lower back hurt and then in my wrists, which made me think I had carpal tunnel. Then my shoulders and neck started to hurt. The pain got so bad I ended up in the ER pleading for the pain to stop. I was started on Lyrica, Cymbalta, muscle relaxers and Amitriptyline for my constant insommina. If I got 3-4 hours of on and off sleep a night, it was a good night. When I was in the hospital I was lucky to sleep 1-2 hours total the whole day. Now I am on Lexapro since the Cymbalta was dropping my b/p too far and I am on Savella since the Lyrica was not helping with the pain. The pain is a little better but not by much. Some days I just don't want this pain anymore and would do almost anything to get rid of it. I had 2 children by c-section, gallbladder and gastric bypass surgery - all were relatively pain free compared to this. I have never had so much pain in my life.

Published: August 27

I have extreme pain in my upper arms and thighs as well as osteoarthritis. I went to the doctor as I had trouble lifting my arms. I was sent to see a consultant who diagnosed fibromyalgia.

Comment from: Audrey, 45-54 Female (Patient) Published: May 24

I now have fibromyalgia I refused to take medication for the fibromyalgia. My doctor recommended daily exercise, and stressed the importance of getting enough sleep. He was right. When I don't sleep well, the pain is almost more than I can tolerate. I would rather suffer with some very painful days, than take medications that very well might damage my kidneys, liver or who knows what.

Comment from: overachiever, 35-44 Male Published: March 10

My pain started when I fell at work and hurt my neck. I had pain in my neck and shoulders. What has helped me is many things combined. First, I lowered my stress. Anything that I thought would stress me, I avoided. My wife helped me a lot. Second, I started taking Cymbalta for the pain. Third, I stretched every muscle, every which way I could five times a week for about an hour a day. I have been a very active person all my life and I really believe that fibromyalgia is a combination of stress and over exercising. I have not exercised besides the stretching for over three months and I look and feel a lot better. I believe a muscle imbalance leads to some of this as well as overly dense muscles.

Comment from: Ikeepgoing, 45-54 Female (Patient) Published: February 23

I was in a car accident in 1999. Back surgery for ruptured discs failed. Pain in neck, back, chest, hands, hips, knees, and elbows. Headache, I take Prevacid every day for IBS. Pain meds and antidepressants help take away some of the pain. Acupuncture and aqua therapy helped, but had to stop when I went back to work. Always tired and achy. I am thankful my condition was eventually diagnosed and given a name. Quite a few "former" doctors indicated it was all in my head. My internal barometer can predict the weather better than most meteorologists.

Comment from: 45-54 Female (Patient) Published: December 17

My fibromyalgia started with uncontrollable headaches when my kids were little and moved down to 17 of the 18 trigger points, I have been on everything under the sun and have accused my symptoms on medications. I know better! I am 45 now and still getting treatment, but I am able to move much better, I am still having fatigue and also hip pain. If my loved ones would only become better versed with this disease they would understand my memory loss and fatigue and so forth. Thanks for the chance to vent!!

Comment from: alan, 55-64 Male (Patient) Published: December 01

The main area of pain is in the neck and shoulder areas has pain. I do not get enough sleep. It is always broken sleep and also I have had diarrhea which my doctor had me go get tests and a cat scan just incase it may have been cancer. Luckily it was not and I am clean, but I still have the diarrhea and the constant nagging pain in the neck and shoulder area. When I wake up in the morning the pain is excruciating and then I have a hot shower the pain subsides a little so I just bare it. It does no good complaining; it's just part of life I guess.

Comment from: 55-64 Female (Patient) Published: October 28

I have suffered chronic pain for 30 years. It mostly affects my neck, back, shoulders hands and chest. More recently I have severe pain in the jaw area, blurred vision and have just had surgery for reflux problems. Sleepless nights with cold sweats and muscle cramps are awful. I was forced to leave a job I loved five years ago, as I had so much widespread pain. People will tell me I look extremely well and although I wouldn't want to look ill, it is extremely hard to make family and friends understand how debilitating these symptoms are. It is only now having seen a new G.P. that I have been referred to see a consultant who is arranging an MRI scan. He has mentioned he thinks it could be fibromyalgia. If it is don't let anyone tell you it gets better. It is totally disabling.

REFERENCE:

Firestein, G.S., et al. Kelley's Textbook of Rheumatology, Ninth Ed. Philadelphia, Pa: Saunders Elsevier, 2012.

Health Solutions From Our Sponsors