Your MS Pain, Please describe.

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Your MS Pain, Please describe.

Postby T19 » Wed Apr 20, 2011 9:14 pm

I'm having a heck of a time describing my MS pain to anyone. I really cannot seem to explain it well.
Can anyone please explain the type of MS pain they are having, location and what you take for it?
I'm really trying to get my message across to the docs but I'm failing miserably and being placed on one thing after another that simply does nothing for me.
So frustrating..
My pain is mostly in my upper legs, hips and and its deep in the bone. Granted I do bottom out on my Vit D and Iron and realize this can cause it but they are treating me for that now IV style because I do not absorb anything vitamins the traditional way.
Also I have had an increase in migraines recently and take Maxalt which helps and have Fiorcet as a back up rescue medication which I don't have to use often but the headaches have been bad and of course can be related to the severe anemia.
Any help is so appreciate.
I'm greatful for this site.
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Postby bluesky63 » Thu Apr 21, 2011 7:31 am

I am sympathetic to this -- I too have terrible pain in that location. Sometimes I say it feels horribly empty, and I may be the only person in the world who understands what I mean by that, and sometimes I say it's like your worst toothache but in the bones, but thats doesn't take into account the overlapping spasticity part. I think there's just faulty nerve communication and the brain fills it in with pain. If I had any brilliant ideas I would have already used them. So I am extending my best wishes instead. :-)
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ok

Postby leetz » Thu Apr 21, 2011 11:04 pm

I describe it (for my legs) as sticking my wet finger in an electrical outlet all day everyday...lol.. spastisity I descibe as an entire body muscle "charlie horse"...hope that help's.... numbness...don't feel it, just cold cold purple foot...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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oh..

Postby leetz » Thu Apr 21, 2011 11:06 pm

forgot the tightness around my back to the front of the rib cage...MS HUG (my ass)...I describe this as a bear hug...tight squeeze!!! Hope this help's!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby T19 » Fri Apr 22, 2011 4:25 am

Thank you soooooo much
You put into words what I have not been able to. That's it!!! I seem to not be able to explain anything the right way but that is so it...between the toothache in your bones and the electrical feelings.
I love this site
I know I'm not alone
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Postby mrbarlow » Fri Apr 22, 2011 4:40 am

Luckily I dont suffer too much pain. What I do get is;

on off dull ache in my eye that had Optic Neuritis

On off Tingling sensation in my feet

Electrical pulses - anywhere in body

Cramp in thights if I go for long walk - 3km or more
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Postby Filmmaker » Fri Apr 22, 2011 7:25 am

Hi everyone
Haven't you noticed that the pain we all suffer from (which is nerve pain-spasticity), if far from being specific to MS?... this pain we have, we share it with all the autoimmune diseases (such as RA, Behcet, Lupus..), yet, for those, the brain is not affected... so I tend to believe that the immune systeme is what creates the pain (and I am sure that as we age, the immune system weakens thus we have less pain, but this may take up to 20 years...) but the MS process (id est iron deposits which really cause the degenerative process) is from sth else which we still have to find out... This is also why some people can be on a wheelchair and have no pain, while others may look normal but be screaming of pain everyday...). So things are a bit more complicated than saying pain is from MS ...By the way, I have pain from head to toes all day long... But I have noticed that high doses of activated carchoal help lessen it...
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Filmaker

Postby lovebug » Fri Apr 22, 2011 4:04 pm

Filmaker what is ` carchoal `??
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Postby T19 » Fri Apr 22, 2011 9:38 pm

Yes please fill us in on that. :?:
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:)

Postby leetz » Sat Apr 23, 2011 12:59 am

PLEASE DO... :D
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Filmmaker » Sat Apr 23, 2011 10:46 am

simple answer: activated carchoal on google... it reduces inflammation in the gut....I'm sure your GI doc has prescribed that to you at leats once...
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Postby Filmmaker » Sat Apr 23, 2011 11:01 am

oh and by the way, think the MS pain shouldbe referred to as CRPS ( Complex regional pain syndrom...), a big name to say blood circulation problems du to autoimmune dysfunction... again, that is common to almost every know autoimmune disease, as well as following any tissue injury or heart attack...and someimes cancer.... so it's clearly from the immune system either trying to repair tissues ar immune system going crazy for no reason... but i don't think it should be considered as a bad thing...
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Postby Wendigo » Sun Apr 24, 2011 6:26 am

I know after coming up on four years with MS my muscles in general are nowhere near what they were strength wise. All muscles are prone to straining but the discomfort is not an ache like with overuse when I was normal. A muscle strain is knife like pain and it can take a day or two to come on. I've had the MS hug which is a burning muscle spasm for no reason. If I were to continue to use a muscle or muscles that are tired they would cramp.
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Postby euphoniaa » Sun Apr 24, 2011 8:33 am

Filmmaker wrote:simple answer: activated carchoal on google... it reduces inflammation in the gut....I'm sure your GI doc has prescribed that to you at leats once...


I think you mean 'activated charcoal'. The typo may be what's confusing them. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Filmmaker » Sun Apr 24, 2011 9:55 am

oups, my injured brain does have pbs with typo:-)
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