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CamillaNell 07-24-2006 02:20 PM

living active with pain all over -- fms?
Hello All --

I've been living with an all over body pain for years now and it is creeping up.
Neck, back, deep behind the shoulder blades, spine, legs, hips high and low, hands and feet always hurt, sometimes wake up numb. Like the full length of muscles running the course of the skelaten, now that I think about it

i've lived with it a long time, it seems to get slowly worse, yet I keep functioning. I just do whatever I do, but with pain. A sport/phys ed friend, when I described this, thought it sounded more like fibromyalgia than arthritis.
Since then I began reading. And the vast majority of desciption of fms matches. It is new to think I may just have this thing.

HOwever, the "pressure point" areas named in medical overviews of this condition confuses me. While most are places of are primary places of pain some are not (front chest area is a rare place I don't have pain). Moreover, I can only imagine applied pressure in these hurting areas as feeling good. the idea of ongoing massage in all of these areas sounds like a good thing, like pain relief, not extra pain. So I don't get that "pressure point" part of the testing. If the fms pain is so tender that pressure increases it, then this doesn't fit my pain anymore. and I need to keep looking and learning elsewhere.

I am in pretty good shape. run and work out regularly, though as the pain increases I have to will myself more, to keep getting out there. But for the past year I do better to take a couple advil first. This pain doesn't seem to keep me from staying active, yet staying active doesn't seem to particularly minimize the pain. I have ongoing, slowly growing it seems, pain whether or not I use my muscles and joints so why not use them for all the ways that contributes to well being.

but if it is possible to have less pain, to learn what is the source of the pain, to learn if it is degenerative and how to keep it from become so, or just, if it possible to heal altogether, well that would be nice.

I would welcome feedback. Does this sound like an expression of fms?

shalom, Cam

mim 07-24-2006 10:18 PM

Re: living active with pain all over -- fms?
What you describe sounds very similar to how I was pre fibro flare and diagnosis. Lots of continuing aches and pains but still pushing to make it through. I am sure others will respond with some in depth advice or understanding. Hang in there!
Mim :wave:

Granniluvs8 07-25-2006 01:25 PM

Re: living active with pain all over -- fms?
Hi Cam

I have just been dxed about 4 or so months ago with Chronic Fatigue Syndrome, Fibromyalgia, Chronic Myofascial pain. I have had it for over 20 years and believe me I know how you feel. I was dxed about that time with what was called Ebstein Barr Viral Syndrome which at that was thought to be at least part of the puzzle or cause of what is now called Chronic Fatigue Syndrome. As stime weht by I got more pain. I have always had the lack of energy but l like you I have been faking it and doing whatever needed to be done. Most of my pain is in my head, shoulders and neck but I also have pains in my lower back and muscles in my arms and legs.

I complained some but found I got very lttle help or sympathey esp at that time when they knew nothing about it or very little. I did alot of reading about it esp from neat groups like this and learned alot. I went first to an endo who took care of my thyroid ( found out I was hypothyroid) and she gave me thyroid meds for that which as I understand sometimes does help the person with many of the symptoms of CFS/FM/CMPS. It might have helped somewhat but after I found that was not taking away all my symptoms I called around for a Rheumatologist. However, let me tel you, if you are looking for dr. and a dx. let your fingers do the talking first before you make the vist. Have your tyroid, arthritis labs, esp done and keep copes of them with your history go show to your endo and rheumy. Some Rheumy's do not bother with us "fibromites". I almost dxed myself with my history and labs. The doc did agree withme. A friends Rheumy who is a very good one does not take people looiking for a dx or help.

DH needs the computer so will get off and stop for now and add later on.You don't need to have all the prressure points at once or at different times. More later. Home some of this helps somewhat. Stress does alot for your body. Mine was in a bad way and that is what starated it.


Granniluvs8 (Marilyn)

Granniluvs8 07-26-2006 09:29 AM

Re: living active with pain all over -- fms?
P.S. Cam

My DH was in a hurry to get on the computer so I didn't finish what I was writing. You are doing the right thing keeping active. (at least as much as you can anyway). My physical therapistsaid in a way said it was good that I had it for so long and was not dxed, as my body did not shut down, shall we say. I was still at the very busy time in my life where I almost had to choice, pain or not.

I am sure that it did help me to keep as busy as possible. I still try to do so but am trying to slow down a little bit( I am 65). It also helps you to keep from getting depressed which is easy to do if you have all that pain. Do what you enjoy, as much as you can. I enjoy singing, do some volunteer work and did some tap dancing but our dance instructor and our place of practice is having some problems, plus it being sumer time. So have been inactive that way but have been going to our gym with some exercises my therapist gave me and also do the treadmilll (mostly for my osteoporosis) but it is helpful for the whole body as I am sure you know. I readlly dislike exercising per se and when you have pain it is really hard to get motivated. My husband is motivated so I usually go with him and force myself )-: !!

I just started some meds for sleep (gen Klonopin and flexeril at bedime). The doc gave me some darvocet N which I am afraid to take and may ask for something else less powerful. I have a friend who takes Tramadol (Gen Ultram) and it helps her.

Bye for now. Hope some of this helps.

God bless,

Marilyn (Granniluvs8)

Glojer 07-28-2006 09:17 AM

Re: living active with pain all over -- fms?
Cam, many of your symptoms sound like fibro. I had fibro for years and didn't know it, but just kept going as I do now. I do think fibro does get progressivily worse in some ways at least mine has. Just making sure your thyroid is in good shape is important, make sure you see an endocrinologist that specializes in that and not just get the "your within range" from your gp. Also if you are not getting good deep sleep that is important also. If you get a chance read the book 'From Fatigued to Fantastic' by Dr. Jacob Teitelbaum it is very good. I bought a copy but I am sure you can get it from the library.


debblydeb 07-30-2006 02:54 PM

Re: Vitalaxin is supposed to help with fms/cfs
OMG the pain from fms is so awful I don't know how some of us go on. I have been doing loads of research on the internet about fms and It can cause all kinds of problems from IBS, to fibrofog, nausea, dizziness and even painful sex. I seem to be one of the unfortunate ones that has about 95% of the symptoms. I recently read an article on Relaxin which is a hormone in the body and sold in nutrition stores under the name Vitalaxin. and I'm just wondering if anyone else has heard about it? Dr. Yue has found out that it's supposed to help people with cfs/fms tremendously. I heard that it takes about 3-4 months to start feeling better and that it does help. Has anybody here tried it?:confused:

ArtsyAthlete 08-07-2006 04:12 PM

Re: living active with pain all over -- fms?
Hi Deb,

I've always been pretty active like you and have had lots of "aches and pains" for the last few years but suffered through it. I have had both severe post-exercise pain and fatigue and random pain that just seems to come out of nowhere. I also have pain that can be induced by poor circulation -- for example, if my DF lays his head on my shoulder and my arm starts to go to sleep, my arm will ache horribly for hours afterwards -- intense, throbbing pain like it is broken!!!

Being an athlete or just being very active, you learn how to listen to your body. You learn the difference between when it's just complaining about being pushed past its limits and when it's telling you something is REALLY wrong and it needs some kind of intervention. This is how I knew something was wrong. For years I was always able to push past the pain and fatigue, but it got to a point where I knew something was really wrong. Eighteen months later and I have my diagnosis -- Fibromyalgia.

Sometimes we need to step back our efforts, rest and recoup for awhile. Don't quit being active, though. When the pain gets bad, I walk instead of run, or do yoga instead of aerobics. I also try to get more sleep -- have to balance rest with motion. The absolute worst thing for me is sitting still. All kinds of excruciating aches and pains settle in. Just try to keep moving, even if only gently, even if just in bed, and stretch often. Movement and flexibility are important. :)

Most importantly, if your body is telling you that something is wrong, chances are, it's not lying! Don't give up in seeking a diagnosis. In my experience Dr.s will pooh-pooh you and push drugs on you and avoid giving you any answers. Just keep talking until someone listens. Don't give up!

bilij 08-07-2006 07:24 PM

Re: living active with pain all over -- fms?
Hello folks, someone posted not long ago to just keep moving. She
said,"if you can't move you legs then move your arms; if you can't
move your feet then move your hands." That post has really made me think.
Now when I hurt, I'm just thankful I can move something and at my age
it's a blessing to be active. (although I don't do much running at 75.)
A fibro friend from Alabama.

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