Types of MS Pain..Please describe yours

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Types of MS Pain..Please describe yours

Postby tt89 » Mon Dec 29, 2008 12:25 am

I have the most HORRENDOUS time trying to explain the pain I feel with MS.

I have no idea why. I can explain a toothache, headache, backache, but cannot for the life of me explain the pain I feel with MS.

When I do I make no sense. I'm wondering what type of pain your MS causes you and how you best describe it.

Thank you to all :wink:

Sidenote: Im still not back on any meds/shots. I go back and forth about it but I just can't see taking the shots again when all they do is MAYBE stop the progression..yet I have to feel 100 times worse than I already do. Makes zero sense to me....I have better days now without them but my bad ones are indeed BAD..
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Postby Loobie » Mon Dec 29, 2008 6:50 am

Hey tt,

I have a hard time with it too. I think most of mine comes from some spasticity and also some arthritis. As the day drags on and I use my legs more, they just start to 'hurt'. I can't explain it either, but it's like an headache in my legs. They hurt from feet to hips and my joints start to ache and my muscles feel like I've been "frogged". I still, luckily, can take 4 Advil or 2 Aleve and it usually dulls it down pretty good, but I have to quit using my legs for them to really work. Then after they kick in, I can get around significantly better.

I have no clue if that helped or not, but I have a hard time describing/pinpointing and being real specific about it also.
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Postby Artifishual » Mon Dec 29, 2008 6:56 am

I'm with you two in that my pain is hard to pinpoint. Right now it is 7:53 am and I feel really good, no pain, but by the end of the day my back will feel as if it is broken. It is not in one general area, but just is a dull aching pain that not much seems to help.


good luck TT and Lew
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Description of my pain

Postby lyndacarol » Mon Dec 29, 2008 7:49 am

For what it's worth, here is a description of my pain. There is no good, accurate description; words are not adequate; it is a feeling.

I have a burning feeling in my legs and feet. It feels like lye is coursing through my blood vessels. Or at times, I describe it as shards of glass cutting up and down my legs. Sometimes it reminds me of a bad sunburn I had once--a raw feeling with occasional shivers.

There it is--my take on my sensations.
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Postby Wonderfulworld » Mon Dec 29, 2008 2:59 pm

Toothache in my legs.
"Nails down a blackboard"-feeling on right side of body.
Nerve-ache in lower back like when you drill too close to a tooth nerve when in the dentist.
Needles sticking into your flesh on right side occasionally.
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Postby tt89 » Mon Dec 29, 2008 9:23 pm

I feel much of that too...the burning and then on top of just heaviness and the feeling of always wanting to stretch my legs but if I do, they will cramp up...its awful.
Im in a few days of a pain cycle I can't get out of. When the docs ask me to describe it. I just can't even begin too and I feel really dumb..

and Im a NURSE

:-(

Thanks everyone


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.
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Ouch

Postby Smilingface » Sat Jan 03, 2009 3:56 pm

My pain must be from spasticity. I did not have any until last Saturday when while sleeping I had a severe muscle spasm (on my good leg right above the hip where the glute and tensor fascia latte inserts) Now I have pain all up and down my leg and even on my skin. I hope it will all go away in time and I'm back to where I was --- walking funny but without pain.
Right now I'm not walking and have plenty of that pain stuff much like you folks have described. My neuro actually suggested 3 days of IV steroids, but we decided as long as I improve with time to wait awhile.
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Postby jimmylegs » Sat Jan 03, 2009 4:26 pm

sometimes burning pain can be caused by b complex deficiency due to glucocorticoid medication (the study link is posted on another thread here)

glucocorticoids include:
Hydrocortisone (Cortisol)
Cortisone acetate
Prednisone
Prednisolone
Methylprednisolone
Dexamethasone
Betamethasone
Triamcinolone
Beclometasone
Fludrocortisone acetate
Deoxycorticosterone acetate (DOCA)
Aldosterone

if you have ever been treated with a glucocorticoid and experience burning pain, you could think about trying a b-100 complex short term megadose: a b-100 pill with each meal and at bed time for 5 days.

one member here (chaz) reported his partner's noticeable decrease in burning sensation in the legs, after three days taking b-100 with each meal. (chaz' partner had undergone three 3day methylprednisolone treatments btw feb and sept 2008. his first occurence of burning pain was after his first methylprednisolone treatment).

cramping and spasticity respond well to treatment with magnesium. many users here have benefitted from magnesium against spasticity. you can boost magnesium foods (eg 1/2c frozen cooked spinach is 20% of needed daily value) and consider a soluble supplement.

general muscle and skeletal pain also responds to d3 supplementation, which goes hand in hand with magnesium too. if you supplement both d3 and magnesium, split up the daily mag and take some with the d3, some separately

HTH!
JL
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Postby Wonderfulworld » Sun Jan 04, 2009 5:53 am

Hi TT89
4got to say that I have found very low dose amitriptyline extremely good for reducing the pain I have. Wish I'd taken it years ago and saved myself from all the sleepnessness and insomnia from night-time pain.

Although I do feel a bit sleepier first thing in the morning, it is a small price to pay for a good nights sleep and a break from that awful pain.

Are you taking anything specially for your MS pain?
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Jaded » Sun Jan 04, 2009 12:09 pm

Thanks jimmy, just remembered I have not been taking my b complex - explains why my burning feet are back!!!

TT, my legs feel heavy at the end of the day (and sometimes before) and I have reduced sensation in one...and my toe feels like someone has taken a hammer to it. I guess we all have different things going on.

One really strange thing that's happened - hurts to step barefoot on my good foot - it's like I am walking on a wire.....weird but I have vague memories of the other one being similar a few years ago. Here's hoping this one does not get worse. :cry: .

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Postby jimmylegs » Sun Jan 04, 2009 1:35 pm

no probs jaded :) hope it works again
do you get glucocorticoid treatments?
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Postby tt89 » Sun Jan 04, 2009 5:08 pm

Thank you everyone
Odd...Jaded....I have this corner of my right big toe that just HURTS and HURTS for no explained reasons whatsoever...strange...

Does anyone recall the name of the powdered magnesium you can purchase online?

Thanks to all. This is very helpful.

I had my MRI last Wednesday....Year MRI from initial diagnosis...Results Pending..

It's in the Lords hands..

Thanks
T
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Postby jimmylegs » Sun Jan 04, 2009 6:08 pm

tt, about that toe... do you take inosine? have you had your uric acid level tested?
my powdered magnesium citrate is called "natural calm". i haven't bought it online but i imagine you could.
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Postby tt89 » Sun Jan 04, 2009 6:28 pm

Hi Jimmylegs
They just ordered that test on Wed when I had a mountain of blood work done...so I'll for sure check on that. Thanks I didn't even think of that.....
I have never taken inosine.

Thanks for the info Natural Calm.. :-)


How are you feeling these days?
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Postby tt89 » Sun Jan 04, 2009 6:47 pm

:D :D :D
Hi Jimmy
I just ordered it online. Im sort of in the country away from big stores that may carry it...this was easier. Im looking forward to rec'ing the Mag from Natures Calm.

Do you find it worked pretty good? Notice a difference?

I'll keep you posted on my blood test results and MRI...

Im not on any meds other than something for pain once and awhile when it gets bad....thats it...I ditched all the other stuff they loaded down with..No shots, no anything....

Thanks for your support...you are awesome!

You all are!
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