Fibromyalgia Help

August 23, 2010 4:27 PM

I have recently been diagnosed with fibromyalgia by a pain doc and then a rheumatologist as a second opinion. The kicker is that I do not think that I have fibro. I have visited all sorts of message boards and my symptoms do not seem to match up with the experiences of others w/ fibro. My rheumatologist is open to other diagnoses and hasn't pigeon holed me yet but cannot suggest another possibility.

From what I can grok, most people who suffer from fibro also suffer from (I have NONE of these symptoms and it seems to be a really big part of the diagnosis):

extreme fatigue
depression (due to the chronic pain or otherwise)
an inability to do physical things because they will pay for it later
lots (days) of bed rest
sleep disorders



From the National Fibromyalgia Association:
Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.

I have NONE of these symptoms other than (also from the From the National Fibromyalgia Association): The pain of fibromyalgia is profound, chronic and widespread. It can migrate to all parts of the body and vary in intensity. FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning.


It goes without saying that YANMD. Could it really be fibro? AND more importantly to me I have been told that if I do not respond well to Lyrica and it's ilk that they do not have many treatment options for me. I tried lyrica/neurontin/amitriptiline and all made my symptoms worse. I am currently taking tramadol and zanaflex which helps some.

Side note: I am sick of going to doctors. I have a lot of electrical zaps in my legs that drive me crazy. My brother has MS.

Sorry that this has been so lengthy.

posted by futz to health & fitness (20 answers total)

Data points:

43 yr old female and I have had 3 major joint surgeries. Both shoulders and one hip due to dislocations. And, no, I am not an athlete although I am a healthy weight.
posted by futz at 4:39 PM on August 23, 2010

You might want to see if you CRPS. It can be mistaken for Fibro.
posted by Brent Parker at 4:55 PM on August 23, 2010

My mother had symptoms much like you describe: deep muscle pain and soreness that was particularly intense in the morning. She went through a lot of testing before she was diagnosed with PMR. Prednisone has made all the difference in the world for her.
posted by contrariwise at 5:22 PM on August 23, 2010

Chronic random (?) joint dislocations can be a symptom of Ehrlers-Danlos syndrome which can also have fibro-like pain (and lots of other complications).

I would keep talking to your rheumatologist. They can be amazing diagnosticians, or not so much, but they are the ones who treat an awful lot of the various things that cause system-wide chronic pain. As someone with one of those other diseases (and I was told I might have fibro by multiple doctors), the best thing for all of us seems to be figuring out what works for us, in terms of exercise, sleep, food, and medication, and doing that.
posted by hydropsyche at 5:27 PM on August 23, 2010 [1 favorite]

I went into his office armed with all the Ehrlers-Danlos info that I could find and he said no. He has a few other patients with EDS but did not feel that I met the criteria. I kinda felt otherwise. We'll see I guess. There is no test for hypermobility EDS.
posted by futz at 5:43 PM on August 23, 2010

hydropsyche, do you mind disclosing what you were diagnosed with?
posted by futz at 5:45 PM on August 23, 2010

I have hypermobility EDS. My rheumatologist thought I had fibro. You're correct that there's no genetic test for the hypermobility type, but there are diagnostic criteria. If you think you might have EDS, you'll want to see a geneticist.
posted by Kicky at 5:52 PM on August 23, 2010

Kicky, I have to get up early so I gotta go to bed now but may I memail you tomorrow? I'd really appreciate it.
posted by futz at 6:39 PM on August 23, 2010

I may be too tired to focus, but - you list what your symptoms are NOT. Could you describe what your symptoms actually ARE?....
posted by EmpressCallipygos at 6:53 PM on August 23, 2010

I'm having trouble understanding your post as well. I think you are saying that your only symptom of fibromyalgia is pain. Pain is the defining symptom of fibromyalgia, hence the name. All the other associated symptoms are just the icing on the cake, and are completely variable, as to be expected with a poorly understood disease that is diagnosed clinically as a 'diagnosis of exclusion' (meaning after you've tested for everything else you can test for). If you had any of those symptoms *without* the pain, it wouldn't be fibromyalgia. You have the pain, so I'll say although there are no guarantees in life, it definitely could be fibromyalgia.
posted by treehorn+bunny at 7:09 PM on August 23, 2010

Umm...I don't quite understand your post, either. If you're having muscle pain or what feels like nerve issues you might check out this book. It helped me a lot with pain and weakness in my legs, and from the reviews has helped a lot of other people, too.
posted by martianna at 9:05 PM on August 23, 2010

Oh, I could have said that, but I didn't want to be a distraction. I have AS. My pain was always very focused in my joints, in particular my hips and lower back, and responds to steroids and NSAIDS, so fibro never really made sense. I ran up against the stereotype from years ago that AS is a men's disease (which was true years ago because women with the same symptoms were ignored or diagnosed with fibro).
posted by hydropsyche at 4:39 AM on August 24, 2010

I have NONE of these symptoms other than (also from the From the National Fibromyalgia Association): The pain of fibromyalgia is profound, chronic and widespread. It can migrate to all parts of the body and vary in intensity. FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning.

Sorry if my post was wonky. What I was trying to say is that the symptoms that I do not have go hand in hand with the fibro diagnosis...severe fatigue etc. Both doctors had never seen a fibro patient who did not also have fatigue.
posted by futz at 5:24 AM on August 24, 2010

Has your Vitamin D level been checked? A Vit D deficiency can look a lot like Fibromyalgia.
posted by COD at 5:37 AM on August 24, 2010

Not a doctor but my understanding is that fibromyalgia is often used as a last ditch diagnosis when they can't find another diagnosis, so I'd skip the pain doc, the rheumatologist and go to a neurologist to check on the electrical zaps you're feeling. You could have some nerve compression or an inflammation somewhere on your spinal cord causing that.

I'd definitely see a neurologist because your brother has MS. MS is difficult to diagnose, but you should start getting some MRIs to baseline and check for lesions.
posted by vivzan at 7:00 AM on August 24, 2010

Well, it's just my opinion (I never make the diagnosis of fibro myself) but I see a lot of patients who carry a diagnosis of fibro and some of them are actually very cheerful and energetic, although they do tend towards the other direction in a general sense. I notice because it always surprises me, like 'wow, this person has fibro? but they seem so normal!' (sorry fibro sufferers, there are some folks out there who give the diagnosis a bad name among doctors).

I think a lot of people in this world in general feel fatigued, whether they have fibro or not. It's kind of like asking people if anything is causing them stress. I've never asked someone whether something's causing them stress and had them say 'nope, there's nothing in my life that's stressful.'

bottom line, it's not really a science, misdiagnosis is out there and I think it's fine for you to look for alternative diagnoses or possibilities as long as it doesn't start driving you crazy.
posted by treehorn+bunny at 8:09 AM on August 24, 2010

Fibromyalgia is the most useless of diagnoses. All it means is that you hurt a lot in certain places, and they don't know why. They don't know what fibromyalgia is, they don't know what causes it, they have no idea why the spots that hurt are located where they are, and there's not much they can do for it (though the drug companies claim that some people get help from drugs like Lyrica). Fibromyalgia means they've given up on finding you a real diagnosis.

I wonder if a neurologist might do a better job for you, simply because your rheumatologist wasn't able to provide real help. I saw four or five different neurologists, myself, and found them far more helpful for my own weird problem than either of the rheumatologists I saw. The electrical zaps you mention strongly indicate you should be seeing a neurologist, anyway.

I've been diagnosed with both fibromyalgia and chronic fatigue syndrome, which overlap in most of their symptoms, though my real problem appears to have been caused by a combination of a previously unsuspected inborn subclinical myopathy with some sort of unknown virus that affected my muscles. I believe that there are probably six or eight different diseases now being lumped together as either fibromyalgia or chronic fatigue syndrome. Those other illnesses you listed can occur with fibromyalgia, but certainly not always, so it doesn't mean much about whether or not you have it.

For what it's worth, the best treatments for my own illness, which might have little or nothing in common with yours, have included getting all of my sleep problems fixed (bad or inadequate sleep results in more pain the following day for most people with fibro), taking a muscle relaxant instead of a painkiller, exercising the right amount (neither too much nor too little), doing physical therapy exercises to reduce pain, and getting my thyroid disease properly treated (I was hypothyroid in spite of persistently "normal" TSH levels).
posted by Ery at 9:01 AM on August 24, 2010 [1 favorite]

For 15 yrs I used a cane due to balance problems that I was told was just a part of my Fibro/CFS. Just like you, my symptoms didn't fit the diagnosis. After 15 yrs of being sent from one specialist to another they found a thyroid problem. Folicular cancer to be exact, it is a very slow growing cancer and doesn't even show up for 10-15 yrs. After a partial thyroidectomy I began to get better. Many of the symptoms went away but not the balance problem, and I still had trouble sleeping, and developed asthma. I asked my doc if I might be allergic to my feather comforter. She said that a simple blood test would tell if I had allergies. Well, I got straight A's on the allergy test, I am allergic to everything the blood test covered, my symtoms are atypical. Thyroid pills and allergy meds have given my life back.
posted by misspat at 5:33 PM on August 24, 2010 [1 favorite]

Sorry if my post was wonky. What I was trying to say is that the symptoms that I do not have go hand in hand with the fibro diagnosis...severe fatigue etc. Both doctors had never seen a fibro patient who did not also have fatigue.

I'm sorry, but I'm afraid I'm still confused.

Let me see if I have this right -- you're saying that you DO have the pain described in the quote you cited above, but you do NOT have the fatigue and other accompanying symptoms? And because you have only the pain, you don't think you have fibro. Do I have that right?

Just want to clarify that before we go on.
posted by EmpressCallipygos at 5:47 PM on August 24, 2010

Yes, pain is my only symptom. It is mostly in my joints but I also scored an 18/18 on the fibro "test". I think it is odd that by the age of 43 I have had 3 major joint surgeries. To recap those: both shoulders and one hip. Before each surgery I was told it would be a simple arthroscopic procedure and that I would go home the same day. All 3 surgeries turned into open procedures with the the doc telling me afterwords "I have never seen anything like that before in anyone of your age/sex and I work on professional athletes!". Yet no doc thinks my surgeries are related.

I have also had every blood test known to mankind.
I do have nodules on my thyroid but the ultrasound is normal. TSH levels normal.
I am not depressed. I am not tired. I am not overweight. Arthritis has been ruled out. There is some evidence of osteopenia. All my vitamin levels are great.

I do not doubt that fibromyalgia is real. I just do not think that I have it.

Thanks!
posted by futz at 6:37 AM on August 25, 2010