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Piling On Diagnoses with Fibromyalgia & Chronic Fatigue Syndrome

They Tend to Keep Coming


Updated June 13, 2014

Piling On Diagnoses with Fibromyalgia & Chronic Fatigue Syndrome

If you have fibromyalgia or chronic fatigue syndrome and nothing else, you're both lucky and rare. Most of us have diagnosis after diagnosis, and they just keep coming.

For the past few months, I've had a definite increase in joint pain and inflammation, especially in my shoulders, hands, knees and feet. These aren't the places that I get fibromyalgia pain, and the amount of swelling was definitely new. Lately, I've had enough inflammation to have nerve compression in my arms, and the joints have been getting hot. I knew that was something new - the heat is a dead giveaway that it's not fibromyalgia pain.

A few days ago, my rheumatologist diagnosed me with polyarthritis, which means it impacts multiple joints. In my case, she believes it's in the hips, spine, hands, feet and knees at the very least. The diagnosis itself doesn't bother me, because it's just a name for what was all ready going on in my body. However, the treatments make me nervous.

We started with steroid injections in my hips, where my pain has been worst. Fibromyalgia can cause negative reactions to steroids and that worried me, but fortunately my side effects have been very minor, while the relief to my hips had been huge.

Because polyarthritis is autoimmune, I'm also about to start a once-a-week drug called methotrexate, which is supposed to keep my immune system from attacking my joints. It can have some nasty side effects (and it seems I always get them, no matter the drug.) Also, since it suppresses the immune system, it will leave me more susceptible to every bug that goes around. With a tendency to catch everything anyway plus two kids in school, it should be interesting.

This is my second autoimmune disease, as I've had Hashimoto's autoimmune thyroiditis for a few years now. Contrary to popular belief, fibromyalgia is not believed to be autoimmune. According to research, autoimmune diseases can predispose people to fibromyalgia, but fibromyalgia doesn't raise the risk of autoimmunity. I suspect, based on my experience and the stories I hear all the time, that further research will show fibromyalgia does in fact raise the risk.

This is my 9th diagnosis of a chronic pain condition. I've also got six sleep disorders and about ten other diagnoses. This can stop any time.

So why do we so often have this cascade of problems? First, it's fairly logical when you consider that fibromyalgia and chronic fatigue syndrome both involve multiple systems in the body, including the:

  • Nervous system
  • Immune system
  • Endocrine (hormone) system
  • Cardiovascular system
  • Digestive system

Each of those systems has an impact on the entire body, down to your last cell. The healthy body is finely balanced, but when you add imbalance like we have to ... well, pretty much everything, you can't exactly count on things to run smoothly. In my case (and countless others,) minor fibromyalgia-based dysfunction in the immune system may have lead to changes that triggered first one autoimmune reaction and then another. It's like knocking over dominoes.

I've written about this before, but in case you missed it, it's worth reading this article on Dysautonomia, by my About.com colleague and Guide to Heart Disease, Rich Fogoros, M.D.

While this piling on of diagnoses makes the future look bleak, remember that we can find ways to manage our illnesses. I utilize a wide range of treatments and management strategies and manage to stay functional, in spite of my growing list. Over the past few years, I've worked with multiple doctors, physical therapists, a massage therapist and a chiropractor. I have a TENS unit, C-PAP for sleep apnea, carpal tunnel braces, TMJ splint, inversion table and massage cushion that I use regularly. I do physical therapy exercises and yoga stretches every day. I take half a dozen medications and about 20 supplements every day. Managing my health takes a lot of time, energy and money, but it has given me back my life.

Now wish me luck with the methotrexate, which I'm planning to start on Friday (Dec. 7.)


Photo © David De Lossy/Getty Images

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