Piling On Diagnoses with Fibromyalgia & Chronic Fatigue Syndrome

They Tend to Keep Coming

A doctor discusses a new diagnosis with an older male patient.
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If you have fibromyalgia or chronic fatigue syndrome and nothing else, you're both lucky and rare. Most of us receive diagnosis after diagnosis, and they just keep coming.

Not only do we deal with symptoms of multiple illnesses all at once, we also have to deal with the treatments. Since fibromyalgia and chronic fatigue syndrome can make us sensitive to medications, that can present a real problem.

How it Goes

For example, a few years ago I 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. I had enough inflammation to have nerve compression in my arms, and the joints were getting hot. I knew that was something new -- the heat is a dead giveaway that it's not fibromyalgia.

My rheumatologist diagnosed me with polyarthritis, which means arthritis in 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 also started on an immune suppresssant to keep my immune system from attacking my joints. After starting at a low dose and gradually increasing it, I had relief but also side effects. We eventually settled on low doses of two different immune suppressants, and that seems to work well for me.

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

Why So Many Problems?

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.

To get a better understanding of why this happens, read Dysautonomia, by my Verywell.com colleague and Heart Disease Expert 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.

Your Healthcare Team

If you're limited to just a single doctor, you may want to explore more options -- we fare better with a team that can approach our symptoms from multiple angles.

For instance, you may benefit from physical therapy, chiropractic, acupuncture, massage or other bodywork, nutritional counseling, etc. Depending on your specific diagnoses, you may want to see multiple specialists, as well.

Don't underestimate the value of your pharmacist, either. They don't just put pills in bottles, they have copious amounts of education on how drugs work, interact, etc. When you start something new, it never hurts to have them look at your full array of meds as well as any supplements or natural products you're taking.

Also, talk to all of your doctors about your problems. It may be that help comes from a surprise source, such as an OB/GYN or allergist.

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