pain

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tgirl

Member
Joined
Nov 23, 2010
Messages
12
Reason
PALS
Diagnosis
12/2010
Country
US
State
Oh
City
Canal Winchester
Pain started in arm. does anyone have side/flank pain, or chest pain, back pain?
 
Only in my neck....

Get it ?

Sorry; could not resist.
 
i get it in my neck and alot in my knuckles and wrist alot
 
funny! we have to laugh!
 
I get pain in my legs when I walk sometimes. Cane and grocery cart make it go away for long walking periods.

What I do get periodically and I am having it right now is prickly sensation beginning of my neck, at the hair line, and it travels down through the rest of my body. When it first starts it itches like crazy, then burns, then becomes painful. The itch continues but not the burning part. It feels like my nerve endings are firing (or inflamed?) I took 2 benedryll about 1 hour ago. When the pain started I took vicodine which has not kicked in yet. I thought this happened before and I asked my husband and he said I get this a lot. I think I am more apt to experiece in the night with restless leg syndrom.

Have any of you with MMN had this kind of pain? Best Wishes, Peg
 
I have positive antibodies but did not have conduction block at the time of my first emg. so I am not so straight forward. I have had the burning pain under my arm, pressure type pain top and back shoulder and at my side, mostly at night, not all the time, not all the pain happens at the same time. drives me crazy not to find a pattern. also some general muscle cramping, however, not sure if part of that isn't better when I am taking my calcium and vit d. So, also just wondering other people's cramping and pain issues. my neurologist did say the nerve pain can come and go, they can be more irritated some days more than others. Does anyone have any thoughts or experiences they want to share? Thanks, Tina
 
Hi,

Cramping is very commom with MMN. I ALWAYS wear socks at night or I get terrible cramps. Also I drink Diet tonic water for the quinine. That also takes care of the cramps. I think I may be addicted to the tonic water as I always have a supply because I would get cramps if i did not have it. I used to cramps in my right hand when I ate. That has not happened for over a year. Try tonic water. I would like to know if it works for you for the cramps. Take Care, Peg
 
will try and let you know, thanks tina
 
Just another FYI, I had a weak R arm that got better after the ivig, but the cramping didn't go away, the fasicualtions did for 1wk, and slowly started up again, Thanks, Tina
 
Hi Tina,

The fasicualtions I get are in the form of Restless Leg Syndrom (RLS). I take one vicodine for that at night or a 1/2 of the extra strength vicodine. I sometimes get it during the day and it feels like my nerves are firing. I don't know how to describe it but I want to shake my arms, legs, hands etc. I could describe it as the "ebby jeebies," but that is probably only a definition for me. :) It does not happen much during the day but it will at night if I do not the vicodine. Both my neuro and my regular Dr. OK the vicodine for the RLlS and any other pain that may occur through out the day. I also take benedryll at night as the vicodine can make me itch. Do you have RLS? The pills normally recommended specifically for RLS have major side effects so I never tried them. Peg
 
I can't say that I do have full blown rls, however, I think I do have fasiculation in the legs that are a little different than occure in the rest of my body, the leg fasiculations are lighter, smaller, and quicker, and at night. they do not bother me enough to have to take anything, so I would say it is not. I am not going to claim to have rls. I am a nurse and am way over analyzing "symptoms" , it has made me a little "crazy". The internet is always the worst case senerio, you can consume your life with looking for answers and checking symptoms. I am so glad to have others talk to. I hope people participate in this support group. It really helps to talk with others that know what you are going through. bought the. tonic water, how much and often do you drink it? thanks, Tina
 
Hi Tina,

I hate to tell you. I drink about 24+ ounces a day. It is my drink of choice. I am sure I drink more than I need so I don't what is needed to keep cramps away. I buy the diet Kroger brand which is a large bottle and yesterday cost 70 cents. Cheap and I like it.


Peg
 
The only place that I really have pain is my sciatica (sp?) on the left side, which is the side my mmn effects. I asked my neuro if it was from the mmn or from being an assistant and sitting all day, she can't give me a definite answer so I'm assuming it's a little bit of both :) The good news is it went away with my induction dose of IVIG and now I'm waiting for maintenance does.
 
I don't get any side/back/chest pain.

I have pain in my affected leg when walking, which worsens the more I walk (I think that is muscles fatiguing). I get some pain / numbness in my foot. I have pain in my wrist from wrist drop.

I get the fasicns throughout, but no RLS.

When I wake in the morning I feel like the nerves down the backs of my legs are tight and need stretching (which I do).

I think I read somewhere that quinine isn't recommended over long term? I understand magnesium reduces cramps but not sure if that applies with MMN.

Personally I find the pain minor - I am much more affected by my loss of function & reduction in quality of life.

Hope that is helpful.
 
"I think I read somewhere that quinine isn't recommended over long term? I understand magnesium reduces cramps but not sure if that applies with MMN."

I have also read that. That is why it is not sold in the USA in pill form. I asked my neuro about this and she said you would have to drink just tons and tons of tonic water with quinine to do any damage. I do try to limit how much I drink, but the concentration of quinine in tonic is just not high enough to cause problems. But check with your own docs. Best Wishes, Peg
 
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