Doubting Fibromyalgia Diagnosis

Hi, Miscast, and welcome!  What do you mean by being on the way to fibro but not there?  Fibro affects everyone a little differently.  Some have more pain than others.  Having fibro doesn't mean you can't do anything.  I've had it for over two decades and have had a full and enjoyable life with fibro.  Rheumatologists are very good at diagnosing fibro, too.  I'm sure tests were taken to rule out other illnesses that have many of the same symptoms as fibro. 

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia and this might help you out.  There is a link to symptoms, too.

 

I have used ibuprofen with food and extra strength Tylenol all these years and have managed nicely.  I also take malic acid/magnesium supplements and vitamin D3 to help with pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients. There are links about these, also, in Fibro 101.

 

I'm glad you found us and joined in.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.

 

Sherrine

Hi Miscast,

My medical history is a bit convoluted....my family (paternal side) has a genetic predispostion towards developing autoimmune diseases. The most popular one seems to be lupus, but Hashimoto's thyroiditis and celiac disease are right up there too.

I've had psoriasis, Hashimoto's and probably celiac since childhood....at least since I was a teenager. I wasn't diagnosed with Hashi's until my early thirties, but the disease was very advanced, basically end stage. My thyroid is dead. But that's not really a problem, I can just take thyroid replacement hormone.

As far as I know, those were my only health problems for much of my life. The celiac disease was just recently diagnosed (most of my life I was told by the medical community that it was "IBS", which apparently means "I be stumped").

So, over the past 18 months I've suddenly received an astounding number of new diagnoses: autoimmune hepatitis, RA, celiac disease, lupus and fibromyalgia. I have not recently been in a car accident. Tell you the truth, I seriously doubt that psychotherapy would help me with my fibro. Fibro is not a mental health issue with me....it's physical. Just as physical as all of the other diseases that are currently attacking my organs. My immune system has become the enemy and it's trying to kill me. And the autoantibodies are there in my bloodstream to prove it.

There are those who believe that fibro itself will eventually be found to be autoimmune in nature; this makes a bit of sense to me, since those with autoimmune diseases are the most likely to develop fibro. Time and research will tell.

Of course, something may have triggered the latest set of diseases and disorders in me....my current working hypothesis involves Lyme disease, since I found out just last week that my Lyme ELISA test was positive. Lyme is known to trigger AI diseases, and even mimic them. But I don't yet know if I actually have it....I still have to have the Western Blot test done.

Well, since you're in an experimenting sort of mood, my suggestion to you would be to try the gluten free diet for a couple of weeks to see if it improves any of your symptoms. I'm gluten free now, of course, because of the celiac disease, but I've only been so for about a year. A number of my symptoms disappeared almost immediately, but definitely not all of them! But I still have hope....

Many of those I've corresponded with online about celiac assured me that most or even all of their other conditions went into remission eventually (after 2 years or so) on the gluten free diet. Conditions including fibromyalgia, RA, lupus, etc. If you're interested, check out the forums at celiac DOT com.....search on the word "fibromyalgia" to find threads of interest.

Good luck to you!
JoAnn

Thanks to both of you. JoAn, your story picks at my anger with some of the medical community I've been exposed to. You probably exhibited your Hashimoto & gluten intolerance well before diagnosis. Doctors used to go by the old wisdom of finding a diagnosis from their patients' words. Now, mostly, only naturopaths apply this wisdom. What has wounded me most, are the doctors who take it personally when their advice does not work - or sitting in my car crying after seeing a 'crusty' specialist who is unaware of medical advances that are at least a decade old.

SassyMyKitty (I want the story behind that name!), I'm also worried about the opiates. I'm working and going back to school. Many of my days have no room for fatigue & brain fog. I'm on adderall (insult to injury for adrenal fatigue), and Percocet. I used to stay away from everything (including over the counter pills/ coffee...), and was cleaner than a baby. If my fatigue went away, I could make friends with my pain. I'll look into suboxone - you have my admiration for taking charge & getting away from the opiates.

I have read that many rheumatoid arthritis patients develop Fibro, but Fibro patients don't usually develop rheumatoid arthritis. What I thought was arthritis turned out to be carpal tunnel and trigger finger (from the accident) - I got my Fibro diagnosis by chance (neg. on ANA test). However, ALL medical advice that eased my symptoms came from alternative practitioners ($$$). I basically stopped eating during a gallbladder attack, until I followed a safe food list, personally tailored by a talented muscle-testing chiropracter.

My brain fog, initially, was due to whiplash and head injury - now, it's either from fight or flight fatigue (ANS out of whack) OR (gasp) an autistic thalamus on strike, sending all pain signals directly to the cortex (central pain). One of the more common threads for Fibro might be conditions of overwhelming pain (IBS sounds right) that eventually change pain pathways. My biggest hope is that I'm not in central pain yet, as this positive feedback loop is difficult to exit. I discovered Bentyl, which works for IBS attacks that come erratically.

I'm sorry about the Lyme disease. We don't have this in Colorado, but we do have Rocky Mountain Spotted Fever. I have not checked this out - there's that balance of not concentrating on pain & cures (feeling & looking like a hypochondriac), and stopping progression in a timely manner.

Doctors here in Boulder wanted my gallbladder, bad, last Feb. I followed my instincts and kept it (a good move). Last winter (& still now) I avoided gluten, dairy, soy, red meat, EGGS (instant nausea) and all processed foods. My daughter has celiac (runs in my family), but I tested negative for it. Even so, with genetically modified wheat everywhere, gluten can be a sensitivity for almost everyone. My digestive problems came (I think) from the vagus nerve (ANS sick) and hormone depletion (adrenal hunger).

Thanks again to both of you. My orthopedic ran a nerve conduction test, and said that I might not be Fibro yet, because I endured the pain so well. I'm hoping she's right. I'll be back, talking like a 'born again' if the post traumatic stress therapy works!!!

Personally, I would think that you have had a bit of trauma! I was fascinated to learn that some people can be completely knocked out by anesthesia, and be aware subconsciously during an operation. These people actually fight back physically, and are very difficult to restrain. I wonder about the rest of us, and our subconscious level of awareness during physical distress - including when pain pills are helping us ignore our 'trauma'.

My car accident had various levels of trauma. As for infection, the whiplash caused inflammation in my cervical facets - no infections. After two steroid injections in my neck, the inflammation remains tenacious. Both infection and inflammation do challenge our immune systems, certainly create trauma in our bodies, and have a commonality of pain. Currently, my wound healing seems delayed (no carpal tunnel surgery for me!) - so it does seem that we both share a compromised ability to heal.

I do get that awful mental fog. Nothing can cut through the inability to think, kind of like a trip into semi-Alzheimer's. I've found, after my initial panic during these 'attacks', that staying calm and allowing myself time (no matter how little time is available), I can write a tighter contract than during a good day. However, I'm self employed. I'm so sorry about your job, and I do hope that there might be some recourse for you - or, better yet, that it was not your job that you saw on Craig's List.

I believe that we all have to find a space between hope, coping with what may be permanent, educating ourselves as our own medical advocate, and stepping away from 'it' when we start to feel like a hypochondriac. I am stubborn, though, about discovering my personal 'trigger'. If we have no clue about the onset of our own Fibro, how can we have hope about taming or curing it? I hope you have all of the support and love you'll need (especially from yourself) to get through your difficulties.

As challenging as changing or controlling our diets can be, I agree with JoAnn about the hugh benefits that clean eating can bring. I hope you have all of the support and love you'll need (especially from yourself) to get through your difficulties. Thanks for your story - I'm truly humbled by it.

I woke up in the middle of surgery-but I was paralyzed...couldnt even open my eyes put felt everything.Heard the sucking up of blood as I almost died on the table.But they never said anything,"shes waking up'and that was all I remebered.That was 20 years ago,,Its just like yesterday.

Yes, good thoughts and kind regards sent out to all for a better decade!