This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello, I'm new here. I'm 22 and was diagnosed with MS a few months ago...I was curious to know if anyone ever felt that it was painful to be touched during an attack? Sometimes it feels so uncomfortable I don't even want clothing touching me. It's like when someone has a fever. and it isn't all of the time.

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I think what you might have is called ALLODYNIA. It is painful even when clothes touch you. Lots of pins and needles and numbness feeling. I have not found anything to relieve the pain yet and I think I have tried it all. Oxycotone, Lyrica, Amitriptyline.........little relief. Let me know if there is something out there thats help this pain. My dr. told me that it is a very difficult thing to treat.

Sarah,
I too have had pain (significant) with clothing. I feel that I am sensory defensive since being diagnoed with MS. It started about one year later. Not certain if it is the copaxone or somthing else. Recetly had injections into the buttocks and hips for area of bursitis and tendonopathy. I am hoping for a miracle. Sometimes don't quite know where to turn and feel my Neurologist has given up. It seems they want to put us all in little boxes and if we don't fit the mold they give up.
I wear sweats without seams as much as possible. When I work is the most difficult as I have diffculty sitting and standing.
Wish I had more insight, I have tried so many things, massage, PT, vitamins, going off the copaxone. Sometimes not certain just where to turn.
Just keep trying and jump through the hoops. There has to be something for this.
Do you happen to be on Copaxone?

I am on Avonex. I don`t know if Interferon could make our problem worse!! Any ideas out there. I to have tried drugs, vitamins, diet. No relief from the pain of numbness and pins and needles.........

Sarah,
I experience what I like to call "hyper-sensitive" skin. It's usually either on my back or my legs were I have it most often.
I've talked to ALL my docs and I either get, "it's just a MS symptom or part of your Fibromyalgia".... So far the only thing that I take that I have found that works the best is Hydrocodone (Vicodine). I do have one spot on my left shoulder blade that is constantly numb and tingily (spelling?) that so far nothing has helped.

I wish I could give you more help. Sometimes it seems a crap-shoot! What works for one, may or may not work for another. I did see in another post on pain that they talked about Magnesium deficiency. It's something to consider anyway!

Good luck and keep us posted!

me too sue, not outright pain but severe discomfort. when i first started to regain sensory after my dx attack i had to buy new soft clothes because i could not tolerate 'hard' thing like jeans. also i could not stand washing my own hair and paid the salon $4 just to wash it - i was okay to come home and dry it. could not wash dishes because of the texture of the dishcloth. i got over it slowly and still after the extreme sensitivity was gone from the rest of my body and most of the remaining numbness was only in my hands, i still felt swollen and puffy. finally after i guess it was years the feeling of puffiness went away and now i just have numb hands. although on a bad day i'll get that puffy sensation a little. i don't know what part of my regimen could have been working on that hypersensitivity, because it was not an instant fix like some of the other experiences i have had using a nutritional approach. not as helpful as i'd like to be but that's all i gots today, unfortunately :S

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

OH yes, to the original question about what I call "painful skin". The top of my head especially for some reason and the area around my upper back. It is most definitely an MS thing.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I have that too from head to toes, i think this is from nerve inflammation....

Hey Jimmylegs, I get that feeling of puffyness too, how many years did it take to become bearable... I am also under a very strict gluten and dairy free diet...I think it helps but not enough...

hi fm,

i think it took a couple years to really feel as close to normal as it's going to.

i do not follow a gluten free or dairy free diet. i was on a strict diet for 15 years, including no dairy, prior to dx so the prohibitive approach doesn't sit well with me.

i do have a healthy, nutrient dense, anti-inflammatory diet. i supplement to make my blood levels of nutrients match 'healthy controls' in the research, rather than the typical levels of nutrients seen in ms patients.

hope that helps!

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com