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Fingernails

I've known for 20 years since I was diagnosed with FM, that it affects the fingernails with...

Posted by sbncmo

2 Replies | Reply | Watch This DiscussionReport This| Share this:Fingernails I've known for 20 years since I was diagnosed with FM, that it affects the fingernails with...

Reply: Fingernails

Hi Mimi, I've been on Calcium with vitamin D for years because my doctor caught...

Posted by sbncmo

2 Replies | Reply | Watch This DiscussionReport This| Share this:Fingernails Hi Mimi, I've been on Calcium with vitamin D for years because my doctor caught...

Reply: Am I a bad nana?

I had never read anything before about FM causing noise sensitivity. I'm like MaryinMt - my...

Posted by sbncmo

9 Replies | Reply | Watch This DiscussionReport This| Share this:Am I a bad nana? I had never read anything before about FM causing noise sensitivity. I'm like MaryinMt - my...

FMS & CMP

I left a message on the resources & want to tell what is making me leave such a warning....

Posted by sbncmo

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.

SheliaView Thread

Posted bysbncmo

4 Replies | Reply | Watch This DiscussionReport This| Share this:FMS & CMP I left a message on the resources & want to tell what is making me leave such a warning....

Reply: FMS & CMP

Thanks. I hope this helps others as well. It just makes so much sense to treat the...

Posted by sbncmo

4 Replies | Reply | Watch This DiscussionReport This| Share this:FMS & CMP Thanks. I hope this helps others as well. It just makes so much sense to treat the...

Reply: FMS & CMP

Nancy, How long have you had FMS & CMP? And did you go thru years of improper treatment...

Posted by sbncmo

4 Replies | Reply | Watch This DiscussionReport This| Share this:FMS & CMP Nancy, How long have you had FMS & CMP? And did you go thru years of improper treatment...

Have a combo of FMS, CMP & CFIDS?

http://homepages.sover.net/~devstar/rheum.pdf

Do any of you have a combination of fibromyalgia, chronic myofacial pain and chronic fatigue...

Posted by sbncmo

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Reply: Fatigue and Fibromyalgia

You can see how my mind is. I must have taken me an hour to write what I wrote & still...

Posted by sbncmo

166 Replies | Reply | Watch This DiscussionReport This| Share this:Fatigue and Fibromyalgia You can see how my mind is. I must have taken me an hour to write what I wrote & still...

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Reply: Fatigue and Fibromyalgia

FMS does make us tired, fatigued, all the time. I posted earlier about sleeping up to 12...

Posted by sbncmo

FMS does make us tired, fatigued, all the time. I posted earlier about sleeping up to 12 hours at night - it's more like spending 12 hours in bed because it is really good sleep - yet getting up & still not having any energy. I have had times when I've gotten out of bed, got in the shower & couldn't get out. I was so exhausted that I just couldn't step over the side of the tub & my husband had to get me out. He always says showers feels so wonderful, so refreshing. To me they are exhausting.

Other's comments are mirrors of my own life as well. I used to be the "perfect" housekeeper, yet now it can be a week or more before I sweep the floor. (Thankfully my husband vacuums) I'll wash the laundry, but they can sit a week before getting folded, which by that time they need done again. I used to be a bookkeeper. Now I screw up our checkbook every time I use it, with double entries or missed payments. I can't remember anything at all. I write things down on sticky notes, but if I don't write details, I have no idea what it is about. Yeah, I was that "get it done" type of person, a real perfectionist. I'm 47 now & started showing symptoms of FMS in my teens & they became full-blown by age 25. I pushed thru it for as long as I could, but by age 30, I also had additional diagnoses of CFIDS (formally known as CFS), CMP & arthritis. I also had a major back injury when I was 22 and I have had epilepsy all my life.

Some have talked about medications that have helped, some about not being able to take medications. I fall into the latter category thanks to the CFIDS. There are also precautions that have to be taken with some meds & some of my health conditions.

I've described fatigue a couple of times here - beyond tired, feeling like weights are tied on me, etc. Sometimes I don't think there is any way to fully describe the extent, the severity of what FMS fatigue is & how it affects us. How do you explain to others that are not in your situation that simply walking in the grocery store for a few minutes exhausts you? Or that you can be with friends and even though you are sitting most of the time, you still become exhausted in a very short time. My sister & nieces love to take me to thrift stores, but standing & pushing thru those racks of clothes & exhausting, so I haven't done it in some time. I hate not being able to do what others do. Others take their agility, their strength so much for granted. I guess we all did until this monster hit us leaving us to fight the fatigue every day. Now that we have it, all we can do is our best. Let's just do our best and don't beat ourselves up for what we aren't able to do.
Best wishes to all my fellow endurers.
SheliaView Thread

Posted bysbncmo

166 Replies | Reply | Watch This DiscussionReport This| Share this:Fatigue and Fibromyalgia FMS does make us tired, fatigued, all the time. I posted earlier about sleeping up to 12...

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Reply: Fatigue and Fibromyalgia

Thanks Joan. It is really difficult for some people to realize that a shower can take every...

Posted by sbncmo

166 Replies | Reply | Watch This DiscussionReport This| Share this:Fatigue and Fibromyalgia Thanks Joan. It is really difficult for some people to realize that a shower can take every...

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