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FMS & CMP
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sbncmo posted:
I left a message on the resources & want to tell what is making me leave such a warning. I was diagnosed with FMS 20 yrs ago & in the next 5 yrs the additional diagnoses of CMP & CFS (CFIDS). My doctor at that time was very eager to learn anything he could about these diseases, but he was also very cautious about "exercising" the muscles. Sadly, he moved & I've been with a different doctor for the last 14 years. I like her a lot. She puts herself on the patients level & is willing to admit when she doesn't know something - most of the time.

However, she is one who puts all 3 diseases into one pot and calls them fibro. If I go in, "Oh, it's the fibro." For almost 15 years I have gone thru PT & pain clinics & steroid tablets & shots. Everything was always focused on the FMS. I'd start out okay the first week & get worse every day until I had to quit. After a month or so, we would try it again. One time we did it in conjunction with steroid shots at a pain clinic & I ended up so sick I couldn't get off the bed. In Dec., we tried water therapy & I almost threw up the first session & was mush worse after 4 weeks even though the therapist had toned down the therapy considerably. In Jan., it was epidurals. Everything focused on the FMS. Finally, in March, she said no more treatments at all, it simply wasn't worth making me worse.

Well, in all this time, I've been getting worse. Of course I'm in a lot of pain in my muscles & I have a lot of pain in my back from a fall 25 years ago & I thought my back was getting worse. I'm reached the point of not being able to walk alone several months ago. I'm very wobbly & start to fall when I try to stand still. I have to have one person to support me on my good days, 2 on my bad days. I go to Walmart in the door near the pharmacy, get my meds & get back to the registers, then I have to sit on a bench while my husband does the rest of the shopping. I've tried those electric carts - they kill my arms.

Anyway, I went to see a rheumatologist in July & I told him my history of all the PT, shots, meds, etc. I wanted to know what exercises I could do that wouldn't make the FMS & CMP fight against each other. He looked at me for a minute, shook his head, then said "I'm sorry. You're going to be in a wheelchair in the near future." I thought he was referring to my back injury. Now I know he wasn't.

I don't have a copy of any of Devin Starlanyl's books on FMS & CMP, so I love being able to find excerpts of it online. I was shocked when I read the information that I posted in the resources. This particular book was written to those in the medical profession, but even those of not in the medical field can benefit from it.

It ended with the statement "It is not that unusual to have one of these undiagnosed or misdiagnosed patients come bed-bound or in a wheelchair, and it is in your power to get that patient functioning, managing his or her own medical care, and enjoying life once again."

In addition to talking about undiagnosed or misdiagnosed patients, it talked in length about improper treatment & how it leads to causing one to be totally disabled.

I believe that the combination of 14 years of intense PT, steroid shots & pills, and my back injury getting worse is what lead the rheumatologist to say that I will be in a wheelchair in the near future. I've had the wrong treatment for too long. And my lower spine is completely smashed together. When they tried to get an x-ray of it, they couldn't distinguish any of the bones.

Anyway, just a word of advice for those with FMS & CMP - if your doc & PT are treating your FMS first, don't let them. The CMP needs treated first. This is 15 years experience speaking. Make them do it right, please. It takes more time, but it will be worth it.

Shelia
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Anon_10089 responded:
Good advice and thanks for the link. It's so important for doctors to not lump us all in to the same treatment plan. Just from reading people's posts here, I can see there's a difference in treatment for myofascial pain and FM pain.

For me, I am more on the FM side and trigger point injections and physical therapy would not be that helpful to me. My pain is widespread and I usually cannot pinpoint a location of it. Exercise is helpful overall with energy and some pain reduction, but again, I don't think P/T would do much for me, as it does for others.

I hope you're able to get on a better track for treatment now and thanks for sharing-I'm sure it will help someone here!
 
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booch007 responded:
Sheila,

This is my bible. Dr Devin Starlanyl's book is my resource for my CMP. I am classed as FM. BUT I AM CMP.

They say we are a little of both. She will tell you, you cannot exercise a muscle that has trigger points in it. You cannot move forward with these issues at the tissue level, they must be addressed. There is another book (a sister book ) called THE ADVOCATE, that she wrote also.

This is in layman's terms not above anyones understanding. I have brought the book to my neurologist and said...HERE..right HERE. FIX IT. She has bought the book and gained from the info. She gives me trigger point injections.

On amazon.com it is 19.99 and worth every penny to help you understand better and maybe move forward.

Thank you for this post as it is so important that people learn about what is wrong with them and get empowered with the information to improve their status in the world. We all will be in wheelchairs if we did what some of these guys ask us to do.

I did the wrong PT path too...O U C H is just not a good enough word. I did barf in a garbage pail the one time....(they were strengthening my CORE muscles)....Hmmm.

My best thing, arms in and dancing on a 19.99 trampoline to music I like. It moves the fluids in my core body, gets the heart rate up...I sing and my arms are home(next to the body) so my neck is stable. THE BEST FOR ME.

Good luck, and thanks again for bringing this forward for the fmily...Nancy B
 
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sbncmo replied to booch007's response:
Nancy,

How long have you had FMS & CMP? And did you go thru years of improper treatment before receiving proper treatment?

I have the FMS, CMP, CFIDS, and I have a serious back injury. There have been a number of times when I have thrown up, not just from PT, but even from going to Walmart for groceries. It's all mixed in together. I don't know where one pain ends and another begins. The trampoline sounds fun, but not with my back.

Shelia
 
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sbncmo replied to Anon_10089's response:
Thanks. I hope this helps others as well. It just makes so much sense to treat the myofascial points first, slowly, before working on the FM points. Because that wasn't done on I & my can run my arms in certain places & it's like rubbing over a washboard. Do you have 'beaking', downward curving with your fingernails? A lot of people with FM have 'beaking' but don't know what it is. It was one symptom that lead to a diagnosis on me.

Take care. I hope this help you as well.

Shelia


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