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Old 03-16-2008, 10:37 AM #1
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Default Anyone have muscle pain and stiffness??

NOT joint pain as that indicates another kind of auto immune problem.

I have been tested for ALL kinds of auto immune problems by my 2 neuro's and 2 Rheumys. I dont have an MS Dx any longer but the MS neuro has not completely ruled it out. He is monitoring me. With several docs & all their theories trying to DX me, I need to know who to go to.

Just in last year my muscles, in certain areas, have had intense pain or now are stiff to move or stretch. Maybe its just part of spasticity which I have had for years and is now moving into more areas. My legs muscles are almost tight and stiff all the time. Now its my arm muscle hurting, or even my fingers, toes and back are stiff and sore. I have NO joint problems.

Any ideas? Do I go back to my Rheumy (who just discharged me) or the MS neuro?? I also have a sleep disorder neuro. Even my eyes hurt and are sore to move at times.

Thanks Jan
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Old 03-16-2008, 10:49 AM #2
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It does sound like spasticity to me, Jan.

What do they attribute the spasticity to, if not MS?

Cherie
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Old 03-16-2008, 10:59 AM #3
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Yes even as I was writing this, I was thinking spasticity. Didn't know if it affected smaller muscle groups.

But what do you contribute the intense pain in such a small area? I have this pain for nearly a year, about the size of a quarter in my upper arm. That was a new symptom. They feel its fibro which the both Rheumies didnt think so.

The muscle problems are getting worse, not better. One Rheumy treated me for an auto immune disease, Sjogrens, a mimic of MS. She said I just had too many symptoms to ignore so she treated me with 2 strong meds as a differential dx.

The next Rheumy did not think so because there were not labs that backed it up and took me off the meds. I am rather confused now. Maybe its just a flare from a disorder with NO NAME lol

See the conflict?
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Old 03-16-2008, 11:18 AM #4
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That does sound like a pressure point of some type, just because it is so specific. I haven't had spasticity pain in a distinct, small area like that, but that's just my experience. Maybe others can pipe in that may have . . .

My spasticity comes and goes (although I know it can just stay for some people) and it is usually most or 1/2 (of usually both, or all) limbs that are effected at one time. It has lasted as long as two years one time, but got better with LDN.

For me, spasticity feels a lot like tendons being pulled to the max, if that helps. The only time my joints are effected is when it gets my wrists (feels a lot like carpal tunnel).

Have you undergone very reliable testing for Lyme? There aren't many tests that are reliable, but this company apparently offers one that is:

http://igenex.com

Cherie
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Old 03-16-2008, 12:23 PM #5
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I experience muscle pain and soreness on a daily basis and take Baclofen and Tramadol to help with the spasicity and pain. Works OK for me but kind of on and off. As with many of my symptoms, some days are better then others.

You may want to have your PCP test for any lack of enzymes in your system as you may be missing some substantial enzymes that help you matabolize in your body and the lack of them is causing build ups in you muscles and possibly your organ. (Is this a run-on sentance or what?)

I don't know how you keep two Rhuemys and two neuros straight. There are bound to be differences in opinions. Due you have a good PCP monitoring all of the general aspects of your medical care?

I always start with my PCP and then progress to a specialist if necessary. Even then, if I like the specialist I stick with just one.
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Old 03-16-2008, 12:49 PM #6
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First things first - Happy Birthday!!!

Now, yes I do have terrible joint and muscle pain and I take 600 mg Neurontion 3X a day for it. It's not helping enough but I don't want to take a narcotic pain reliever.

My worst pain is in my fingers on my right hand. By the end of the day my hand is screaming. I called my Neuro about it but all he did was bump up my dose of Neurontin.
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Old 03-16-2008, 12:52 PM #7
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Thanks Craig and Cherie for helping me out.

I have had 2 Rheumies after the MS doc and his PA before that thought that my "newest" symptom, this terrible pain about the size of a quarter in my upper arm was Fibromyalgia.

By the time they checked me I had all the pressure points for Fibro.. so I took myself to a Rheumy. Yes EVERYTHING else was ruled out by MS doc and by this Rheumy except for HLA-B27. My labs didnt match up for my other symptoms of very dry eyes and mouth. But she gave me Rx eye drops, a GREAT pill that creates saliva ( a life saver) and 2 auto immune fighting drugs. One was too severe, Methotrexate, but stayed on Rx Plaquenil.

Rheymy no 1 leaves her practice, so Rhuemy no 2 who says my labs dont fit her DX of differential Sjogren's, a mimic of MS. AND it causes lesions. i have plenty of lesions.

So he takes me off the meds and my muscles ae now worse. i have Baclofen and Lyrica which I take for spasticity and spasms in my back but try to take it ONLY at night. I need to be as alert as possible for job. My MS neuro WILL treat symptoms .. he's just not sure if I still have a mild case of MS.

Now I think the meds the 1st Rheumy had me on was helping my muscle pain.

Oh well, who the heck knows. ITs prob the Fibro AND spasticity...tho BOTH Rheumies didnt think I had that.

WHat an absolute guessing game!!! So much for my 2008 goal of eliminating as many docs as I can and their meds if possible

Thanks tho

Jan
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Old 03-16-2008, 01:09 PM #8
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HAH! Jan, that's always my resolution is to get down to a minimum of meds in my life. I have over 10 Rx meds that I have to take during the day at different times.

Everytime I ask my doc's which meds can I do without, they just look at me and say, "you're on these for life...........until something changes of course." Then they always let me know to keep an open mind as I may need more as the disease progresses.
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Dx'd 05/01 w/SPMS
03/05 Rescinded MS Dx Neuro thinks something else
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Rare deteriorating motor neuron disease. No cure. No Treatments.
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Old 03-16-2008, 09:31 PM #9
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hi jan,

i really feel for you. i have a lot of muscle pain too.
i've had a fibro dx since the 80's.
as of the latest my MS specialist attributes my pain to the MS.

i also get weekly massages which help a lot but they don't last. within a couple of days i'm back to square 1.

maybe your pcp could help direct you.

i just came across a website (which i havn't checked out yet) from my US News & World Report. it's a symptom search tool. "find possible causes of what's ailing you" it says. the search tool is from Healthline.

health.usnews.com/symptomsearch. sorry i don't know how to make a link.
and like i said i havn't checked this out myself. sounded interesting tho.
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Old 03-17-2008, 01:44 PM #10
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Sounds like spasticity to me too... I have had pains that small in my arms and legs - I always figured it was a little muscle cramping up. I have a specific muscle in my right arm that cramps constantly, and it's been doing that for four months - so I definitely think you could have spasticity in a muscle for a long time.

On the other hand, my left calf was really sore for weeks and wouldn't quit being sore... until this Saturday, when I woke up and it didn't hurt at all! Yay! I guess that nerve healed up.
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