Fighting Fibromyalgia or CFS? Talk to Every Doctor, Every Time!
When you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS), first you get frustrated by your symptoms, then you get frustrated by the medical community for not recognizing/understanding/believing in/adequately treating your illness. You don't have the energy to deal with it, so it's easier to just give up. Right?
No! Bzzz! Wrong!
Giving up will cost you countless opportunities for feeling better. Don't believe me? Here are some examples:
From Strep to Lupus?
During those scary months between the onset of pain and an FMS diagnosis, I came down with strep and went into urgent care. The doctor there (a wonderful woman who I will never forget!) dealt with the strep issue and asked if anything else was going on. I hesitated, then told her the medical saga I'd been through. Her response was, "It sounds like lupus." She then told to educate myself and push my doctor for specific tests, and not to rest after one negative result. I did what she said, and my pushing finally got my primary care provider to refer me to a rheumatologist, even though all the tests remained negative. After five minutes with the rheumatologist, I had the diagnosis that set me on the path to proper treatment and management. Even though the urgent-care doctor was wrong about lupus, she was right about everything else.
Not His/Her Specialty? So What?
My FMS flare-ups were consistently triggered by PMS, my cycle was irregular, and periods were heavier and more painful than ever. My rheumatologist nodded wisely, told me that was fairly common, and didn't offer much help in that regard. So, when I went for my yearly check-up with my OB/GYN, I talked to him about it. I figured, "He's the hormone guy, right?" Right. He told me about endometrial ablation, a hysterectomy alternative in which the uterus is cauterized so it no longer fills up with blood. It's a simple procedure that eliminates the PMS hormones called prolastins, which are put of by the uterus as it thickens. He thought the prolastins were probably triggering my flare-ups. He was right. A 15-second blast of electricity completely eliminated painful periods as well as PMS and the flare-ups it had brought along for the ride. Of course, a lot of other things trigger symptoms, but I'm no longer incapacitated for a full week every month.
These two doctors have been crucial to the path that has brought me to a much more functional place, and if I'd kept my mouth shut they never would have been able to help me. What I've learned is to never stop talking about it, never stop asking questions and never stop pushing for what I need to be healthy.
- Learn more about endometrial ablation.
- Fibromyalgia and lupus can appear very similar. Learn about the differences.
- Find a doctor who treats fibromyalgia.
- Find a doctor who treats chronic fatigue syndrome.
- Find out what treatments work for other people with fibromyalgia or chronic fatigue syndrome in our forum.
Comments
Adrienne, Thank you sooo much for commenting about FMS pain and the endometrial ablation procedure. I experience terrible, terrible FMS pain, much worse than normal, two days before and the first two days of, my period. I almost feel like I could die. Its not just the pain but other PMS symptoms. My period is also very heavy. I am 52 and not yet in menopause. My GYN wants me to consider EA, not so much for the FMS pain but because of the heavy bleeding. I, on the other hand, am much more interested in just surviving my period by reducing the FMS pain! I have found very few comments on the web tying a reduction of FMS pain and the EA procedure together. (Most women seem to address one or the other.)
I noticed you wrote this article in Jan 2008. I’m wondering if you have continued to experience pain relief more than 1.5 years later. Any advice you can give would be appreciated.
Jenny,
I believe the EA was the beginning of a positive change that has continued for 2.5 years (I had the procedure a year before writing this).
Before the EA, I had one good week a month — the week after ovulation was bad, the week after that I was incapacitated, and the week of my period was back to “just” bad.
After the EA, my flares were milder and farther between — starting immediately. While I can’t say you’d have the same result, since it’s extremely rare to have EA as FMS treatment, I can say it was one of the best things I’ve ever done for myself.
Of course, as with any medical procedure, you’ll want to look at the procedure and decide whether you’re comfortable with the risks involved. Also, expect to have a longer recovery than most women — I was very limited for about a week afterward.
EA hasn’t been studied in conjunction to FMS, but I hope someday it is looked at as a treatment option for those of us with a clear hormonal link.
Best of luck to you with whatever you decide!
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Yes, I would not consider this except for the fact that I have seen a very clear hormonal link – though I couldn’t even see that until undergoing years of FMS treatments and thousands of dollars. Then one day, the light came on as I looked at my pain diaries and saw a pretty consistent pattern between the most agonizing times of pain and my period. I would be thrilled if I could at least lessen that link!
I am pretty nervous about having the EA although the Gyn practice is awesome and cutting edge. They have assured me that the MEA is safe. They just don’t promise a reduction of PMS or other pain (or symptoms.) That’s why I was particularly interested in your experience. I will continue to pray, pray and seek direction. Thanks a million for your willingness to share your experience and hope!