Types of MS Pain..Please describe yours

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Postby harveythewonderhorse » Sun Jan 04, 2009 7:14 pm

soles of both feet feel like they are badly sunburnt, all the time, gabapentin helps tone it down. Left side muscles all tight (the "ms hug" ) amiltriptilne helps. Legs muscles get very very sore by the end of the day, like I'd been out on the horse for hours(I wish!!) Scalp-of all places, feels tight and sore to touch, haairdressers with long nails a nightmare)
horse of a horse!
Diagnosed 2001, r/r.
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Postby jimmylegs » Sun Jan 04, 2009 7:17 pm

hi tt, yea with the toe pain, it sounds gouty which would be very unusual in an ms patient UNLESS they were cranking loads of inosine, which you aren't. but that's good that they'll have a test result for you soon. i'd like to hear what they come back with if you don't mind!

natural calm definitely worked for me to help going to sleep, and also to calm spastic muscles. i've had reports of it helping all kinds of different symptoms. if you can boost your magnesium foods too, that's best for absorption. mag plays nice with potassium. swiss chard is the golden boy with both those goodies in profusion. not my fave dark leafy green, but i guess it's worth it!

i don't have much pain per se though, just annoying tension in my arms sometimes. sometimes i do think i'm getting a hint of neuropathic burning pain around my mouth but i bump up the supplements for a few days and it heads it off. i think i attribute that mostly to the b-complex but i don't take only that so can't be sure!

so you're doing the self care thing too huh? what supps will you be taking besides magnesium?
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Postby tt89 » Sun Jan 04, 2009 7:30 pm

Hi JimmyLegs...
Well Im on Vit D ( since it was depleated in my blood test from a few months back...actually from the start of my diagnosis which was in Jan 08).....I take 50,000 IU's two times a week per the docs...
I'm going to take the Mag and add B....any suggestions on B complex.

I really don't do anything other than take the BIG pain meds for when the pain is BIG and even then I take very little. It's Lortab Elixer of which I have my original RX since diagnosis....It calls for 3 teaspoons evey 6 hours...HA HA

I take ONE Teaspoon maybe once or twice a week if that....

My Pain is really odd..Morning pain but at night I have where my muscles ache like I need to STRECH them but then if I do..they lock up...I have nerve pain in the right leg..
Not sure if the TOE is gouty because I read up on that just now and don't fall into any of the symptoms other than a sore toe in the top corner..could be the nerve pain thingy....

I will for sure keep you updated..

do you have RRMS? That is what I have...

Im not going to deal with those shots anymore. No benefits..none WORTH taking them for..even if the MRI shows more stuff on it...I'll keep going this way...I simply do NOT buy into the shots..I have them mega chances a few times and types..and NO WAY....Done with that..I keep thinking I MAY have to go back but I seriously do not want to and will fight it with all I have...

See the Neuro Doc on Jan 12 and it won't be good. They will NOT be happy Im off all the meds. I flushed it all. Baclofen, Neurontin, Provigil, SHOTS, all of it is gone...

Thanks for everything
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Postby Cleremond2000 » Mon Jan 05, 2009 10:43 am

TT,

Good topic.

For me it feels like I have a constant low level buzzing in my legs. Mostly in my left. When I'm on my feet for more than 5 minutes, the fatigue starts setting in and I begin to feel like someone is turning up the force of gravity.

Ultimately I begin to feel like I'm struggling to walk through 3' of snow. Each step become very difficult to execute properly and my whole gait is thrown outta whack. My back begins to give out at about 15 minutes.

I'm still mobile...but man, do I hate gravity.

I sometimes get leg cramps in my shins and feet at night or if I sit wrong for a lon period of time.

All in all...not that bad...

I'm hanging in there. Every day is a new day.
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Postby Jaded » Mon Jan 05, 2009 10:49 am

hi jimmy

no I don't get glutocorticoid anything...what would that help and how could I get that?

You are such a mountain of knowledge - much appreciated as ever.

J.
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Postby jimmylegs » Mon Jan 05, 2009 10:53 am

hi tt yep, rrms. so they say. we'll see :S hehehe

yea i didn't really suspect gout since you're an ms-er, that would be bizarre. but since it was the toe, and since i just had a friend dealing with gout it was kind of in the front of my mind!

anyway so if you're taking that much d, be certain to take 1200mg calcium daily, at least 600mg magnesium daily, and 50mg zinc.

i will be really curious to learn your current uric acid level, and then to hear if it changes if you decide to start taking zinc!

for the b-complex, i suggest b-100. you can megadose it for a few days, taking one b-100 with each meal and at bedtime.
then back off to one a day which is fine in the long term.

i used to get that thing where if you stretch your legs they lock up. mine would cramp especially in the back of the thigh. magnesium helps!

all these things have important other nutrients they like to play with so a solid multi wouldn't do you any harm.

also keep yourself hydrated! (that's my new thing hehe)
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Postby tt89 » Mon Jan 05, 2009 11:00 am

Thanks Jimmy
Oh I so need to drink WATER
I HATE WATER

I wish I could drink it like most do. I live on Diet Coke which Im sure is HORRIBLE but its just that I hate water..and Juice...ewww...and MILK for sure I'd never drink..Makes me really sick to my stomach. Even Skim...

What a mess I am...

I hear about my Diet Coke habit all the time from folks....but I can't help it.... :cry:
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Postby jimmylegs » Mon Jan 05, 2009 1:37 pm

oh my at least you KNOW it's horrible!

i used to hate water too, and i still don't drink enough..
i certainly don't drink milk either.
but neither do i drink pop, and i CAN'T STAND fake sweeteners, that's what makes *me* sick to my stomach!

can you stand herbal tea? i hope so because you better get used to it with the natural calm lol!
fyi i sweeten the natural calm just a smidge with plain old organic cane sugar. and a lot of times i can't even handle the full teaspoon of powder in a mug of hot water... our mugs are pretty small and personally i need the powder to be pretty diluted.
sometimes i put a squeeze of lemon.
i hope you can get used to it!
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Postby notasperfectasyou » Mon Jan 05, 2009 1:47 pm

tt89 wrote:I do have this thing the last few days where the pain shoots up from my heel on my right foot to my hips..and its horrible. I don't know if its MS or I hurt myself. I can't even tell.


I had that. I saw a neurosurgeon. Had a disctectomy/laminectomy and .... bang, pain was gone and I could function. It won't fix the ms, but maybe you have what I had, forgot the actual name for it. Ken
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Postby tt89 » Mon Jan 05, 2009 2:31 pm

Jimmy you are too funy
Yes I've been TRYING to steer away slowly from the Diet Soda. Now I cannot drink real soda...I hate sugar! but I can do diet soda
Lately I like hot apple cider...for some reason..crazy!
Ok...Thanks for so much....endless thanks to you and everyone

Ken- I will look into that for sure. How involved was the procedure...

I had to have a biopsy of my thyroid done which failed because suddenly I have a BAD allergy to Lidocaine so they are afraid to numb me for anything until we figure out what I can have. This is suppose to be a rare allergy....not sure how I developed it...

Thanks for everything
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Postby notasperfectasyou » Mon Jan 05, 2009 3:16 pm

tt89 wrote:Ken- I will look into that for sure. How involved was the procedure...


It was surgery at a hospital. I was out in a day. I had to do PT for several weeks, but the pain was completely done, has been for years. I spent years going to the orthopedic about it and they would give me percocet and physical therapy. After 20 years of percocet and PT I got sick of the whole thing and told them I wasn’t doing it anymore and I wanted a different solution. That’s when they said I might want to see a neurosurgeon. Amazing, wish I had gotten fed up with it all sooner. Ken
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Postby jimmylegs » Mon Jan 05, 2009 3:44 pm

20 YRS OF PERCS????? i'm amazed your body isn't manufacturing migraines or some other pain, left and right, to get the meds back.
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Postby jimmylegs » Mon Jan 05, 2009 3:46 pm

and hey no worries, tt, if you are into apple cider then that's something! and a daily mug of natural calm will be an added bonus too.
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Postby notasperfectasyou » Mon Jan 05, 2009 4:11 pm

jimmylegs wrote:20 YRS OF PERCS????? i'm amazed your body isn't manufacturing migraines or some other pain, left and right, to get the meds back.


LOL!!!

No, not constant. Think of them like Solumedurol. I'd get a spine issue about once every 2 years and over time it got more regular. By the time I was "done" I had 4 within 12 months. I hated taking them and would ween myself off as quick as possible. Ken
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Postby jimmylegs » Mon Jan 05, 2009 5:16 pm

here's what thinking of something like solumedrol means for me:

____________________________________________________
(read: i have no idea)
anyway, gotcha, intermittent. good call with the weaning!
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