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Fibromyalgia "Truisms" ??
2 Replies
dllfo - November 30

1. Fibromyalgia (FB) strikes whenever, wherever
it decides to. We cannot predict the next
pains location. Foot, ankle, hand...?

2. No single medication can help all of us. That
is, Mirapex seems to be stopping my RLS and FB
at this time. Tomorrow? Who knows. How about

3. Exercise? What helps you may hurt me? I am
new to FB. I think. I just deoxed off
opiates and RLS went wild. Then I went to my
Neurologist to discuss RLS when he got
sidetracked into talking about this weird
"disease" called Fibromyalgia. And my life
changed. Forever I guess.

Anything to add? I am trying hard to be patient, but it is hard. I have an inoperable lower back.
Damaged when rear-ended in my truck. I just detoxed because of Respiratory issues and difficulty with my cognitive skills. It can be depressing at times.

I go for a short walk with my wife and I leave the house feeling "OK", or as OK as my ailments allow.
I walk twenty feet, or maybe I walk one hundred feet and I get such severe pain in my lower extremities that I can't bear weight on them. I sit on the side of the road until my wife brings the car to get me. Frustrating. It is hard to make plans. I know many of you are worse off than I am... but miserable is miserable I guess.

Thanks for listening...


Fantod - November 30

Hello dllfo - I'm really not sure where you were going with your post but I am going to try and give you some constructive feedback. As you are new to fibromyalgia (FMS) I want to make a couple of comments about it. I also have a lower back problem that really restricts me. I have a tough time walking, standing and sitting for any length of time. I'm certainly not as extreme as your situation but I "get" your frustration and sadness. Are you seeing a rheumotologist for FMS? If not, I recommend that you do see one. You can find an FMS friendly rheumy by going to the National Fibromyalgia Association website to get a referral in your area. I would also recommend that you see a pain specialist. They may have some better ideas about how to manage your situation. You can find one by calling your local hospital physician referral service. I think getting your level of pain under control is a very important first step. If no one has talked to you about an epidural or a pain pump to control your back pain, now is the time. A fresh set of eyes for the FMS and pain issues would not hurt. FMS is poorly understood by both the people who have it and the medical profession. Essentially, it is a short circuit in the central nervous system that causes your pain receptors to be stuck in the on position. It can be caused by trauma or an ongoing high level of pain from one or many sources. There are a number of non opiate medications that can be helpful to treat FMS. Only certain classes of drugs are effective and must be prescribed. Generally they are low doses of anti depressants such as Lyrica, Cymbalta and others. Usually FMS patients also suffer from sleep deprivation which increases their pain levels because the muscles are not getting sufficient rest. Amitriptyline is prescribed for this issue. It does take time and a lot of tinkering to get the most effective doses worked out. But, FMS can be managed fairly well by a knowledgable rheumotologist. You need to become an educated consumer when dealing with your complex medical problems. Especially with FMS which is a conundrum all by itself. Take some time to read the information of the lefthand side of this page. There is a lot of good information there. FMS is not the end of the world, it just requires readjusting your expectations. You can still do things, they may just have to be done in smaller increments or differently. I have problems with exercise too. I've been in physical therapy and unable to do the most basic things other than show up on time. Once you get your pain issues under control than you may be able to do something like a program of water aerobics for arthitis which is not weight bearing on the joints. If nothing else, you need to find some new interests that allow you to exercise your mind while you work through some of these things. As I said, I am restricted and many days I have to reprioritize my plans. I have cultivated some things I can do that don't require a lot of moving around. If you can be engaged with a hobby, it takes your mind off of the things that are troubling you. In a nutshell, you must learn be grateful for anything that you can do no matter how piddling. Finally, I want to gently suggest that you consider seeing a therapist. You are overwhelmed and need some support from a professional. I am suggesting this not only for you but also to help your wife. If you take this step, it may be more of a help to her than you realize. I'm sure she feels as overwhelmed as you do most of the time. Helping yourself will help her cope better too. I see one a couple of times a month which has been very helpful. I have a better perpective on my situation and feel much stronger mentally. I hope that some of my comments are helpful to you. Take care and let us know how you are doing.


wellshorse - December 2

Oh my gosh you explained what fibro is in a way that know one else have have said to me. It makes total sense. I have been dx for about a year now and seem to have a pretty bad case. It took me a year to find a Rhema dr that specialized in the disease. I am on very on high doses of pain meds and not sure if they took me off if i could survie. I to have a back problem which seem to have started all of it. I have Schwanomas in my spine wraped around my nerves. They have removed one August of 07 they did not find the other three till after the surgery. I never recovered it was like I went from the surgery to fibro. My fibro seems to be worse in my lower body. So its hard to tell with my back what is fibro and what is the tumors. My life is not the same life it was before Iam only 38 have four kids under the age of 14 makes my life very difficult. Before the surgery I was going to the gym three to four times at week for about two hours each time. I wish I could have my life back but it looks like it will never be the same and I just need learn to cop.



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