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Old 10-06-2012, 09:15 PM   #1
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Neuropathy

Hello,

This is my first post to this site & first time here. I have been to two other MS sites but nobody has ever posted on my problem of having neuropathy in both legs and feet. My pain now is unbearable even though I go to a pain specialist and am taking 2800 mg of neurotin and 5 mg of loritab (3x a day). Does anyone here have the same issues as me? I am 53 and have had MS since at least 34 years old. Have been doing well until the neuropathy issues kicking in these last two years. Started with plantar fasciticitis in the beginning.

Wonder if there is anything else I can do to ease this pain. I just had my sister make me caspacian cream and hoping that will help a little. Wondering if this could be due to another health issue.

 
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Old 10-06-2012, 09:45 PM   #2
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Re: Neuropathy

Welcome

I have 10/10 pain in my left leg left shoulder, left triceps and elbow and left hand. Until this August, my pain has been confined to my left lower back, left hip and femur. The first instance of this left my leg disabled and to this day it drags when I get tired.

The only thing I have found which works for me is my heating pad. I tried cold compresses to no avail. From my personal experience I know that heat overcomes my nerves and they tend to shut down. Based on that, I placed the heating pad on the area of my most intense pain and within minutes it went from a 10/10 to a 2 or 3/10 and many times 0/10.

I cannot promise you the same results. I start at the main area of pain and then move to the next pain spot and continue and then I will return to the first spot and start again.

Again, welcome!!
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Old 10-07-2012, 09:17 AM   #3
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Re: Neuropathy

Just to add, I discussed the topical cream with my neuro. The problem is the depth of the affected nerves. That is, topical creams do not penetrate very deeply. There are creams which are designed for deep penetration to combat nerve pain. A 100 g tube, however, costs $600 here in the US or $220 in Europe, but there is no guarantee that it will work on every patient. Interestingly, the same chemical composition lotion from the vet is 1/3 the cost!
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Old 10-07-2012, 11:33 AM   #4
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Re: Neuropathy

Quote:
Originally Posted by MSJayhawk View Post
Welcome

I have 10/10 pain in my left leg left shoulder, left triceps and elbow and left hand. Until this August, my pain has been confined to my left lower back, left hip and femur. The first instance of this left my leg disabled and to this day it drags when I get tired.

The only thing I have found which works for me is my heating pad. I tried cold compresses to no avail. From my personal experience I know that heat overcomes my nerves and they tend to shut down. Based on that, I placed the heating pad on the area of my most intense pain and within minutes it went from a 10/10 to a 2 or 3/10 and many times 0/10.

I cannot promise you the same results. I start at the main area of pain and then move to the next pain spot and continue and then I will return to the first spot and start again.

Again, welcome!!

 
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Old 10-07-2012, 11:43 AM   #5
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Re: Neuropathy

When I take a shower, I let the warm water stay on my legs and that does make them feel better. I need to remember to bring a heating pad out during the night while I am watching t.v. but during the day, I am still working part-time and have to cut back on my neurotin & loritab so I can concentrate at work. By the time I get off, I am in tears with the pain.

My pain is a constant burning in upper thighs & behind legs. My feet feel like they have open sores on portions of the sides and bottoms. I keep looking down at my feet to see if there are any open wounds but there is not. Now since the weather is starting to change, the cold air on my legs and feet feel as if you have an exposed root in your tooth and when cold water hits it, you almost go through the roof. Plus I go through bone aches and leg aches really bad. It has become a nightmare....

Thanks for letting me know that I am not alone....

 
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Old 10-07-2012, 11:59 AM   #6
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Re: Neuropathy

There are heat pads which warm to to a chemical mix, but I stay away from these because they can, overtime, cause skin irritations or burns. While I am on campus chaperoning my youngest, if I am hurting, I will bring my heating pad, otherwise I will be in too much pain by the time he is through his classes.

I do not know if your work allows you such an opportunity. Since you have MS, you have the ADA on your side and your employer can make reasonable accommodations for you (such as a receptacle to plug in a heating pad).
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Old 10-07-2012, 01:50 PM   #7
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Re: Neuropathy

Quote:
Originally Posted by MSJayhawk View Post
Just to add, I discussed the topical cream with my neuro. The problem is the depth of the affected nerves. That is, topical creams do not penetrate very deeply. There are creams which are designed for deep penetration to combat nerve pain. A 100 g tube, however, costs $600 here in the US or $220 in Europe, but there is no guarantee that it will work on every patient. Interestingly, the same chemical composition lotion from the vet is 1/3 the cost!
Please bear with me as I learn how to post here. I think I may be posting blank posts.

Does the pain I describe is the type of pain you experience? Just wondering how long has it been going on with you?

In regard to the cream, my sister made for me yesterday, she did not add enough of the habenero powder as she looked at my receipe and realized she doubled the cream without doubling the spice. Today I will add more habenero powder to her cream. She also told me to infuse it but doing that, takes six weeks. Olive oil penetrates your skin along with almond oil. I read by using the caspican cream, it is suppose to cut the pain by 50%. Once I get the right strength, I'll let you know how well it works.

Last edited by LasVegasgirl; 10-07-2012 at 01:59 PM.

 
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Old 10-07-2012, 02:37 PM   #8
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Re: Neuropathy

Not to worry. The first few times you post can be confusing, I remember!

I tried a strong capsaicin cream, but for me, it did not penetrate to my problem level. I would indeed love to hear how yours does. Hopefully you will do well. I do love hot sauce and salsa to eat, though it does not help my nerve pain, it satisfies my appetite!

I think the pain you described is similar to what I feel. For me, my leg pain is tied to the lesions on my thoracic spine. The left arm/shoulder/elbow/hand is also due to connections to the t-spine. I suspect that there is a new lesion higher up my t-spine just below my c-spine. Most of my pain cycles start in early August and can last for 6 months. I did not start to experience nerve pain with my MS until 2002, but I did have a couple of minor bouts in 1982. The worst attack started in 2007 and left my leg damaged. My doctor has me using a passive exercise bike which helped me recover much of my leg use, but my leg will still drag each day after I get tired or it may drag all day.
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Old 10-07-2012, 04:21 PM   #9
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Thumbs up Re: Neuropathy

Quote:
Originally Posted by MSJayhawk View Post
Not to worry. The first few times you post can be confusing, I remember!

I tried a strong capsaicin cream, but for me, it did not penetrate to my problem level. I would indeed love to hear how yours does. Hopefully you will do well. I do love hot sauce and salsa to eat, though it does not help my nerve pain, it satisfies my appetite!

I think the pain you described is similar to what I feel. For me, my leg pain is tied to the lesions on my thoracic spine. The left arm/shoulder/elbow/hand is also due to connections to the t-spine. I suspect that there is a new lesion higher up my t-spine just below my c-spine. Most of my pain cycles start in early August and can last for 6 months. I did not start to experience nerve pain with my MS until 2002, but I did have a couple of minor bouts in 1982. The worst attack started in 2007 and left my leg damaged. My doctor has me using a passive exercise bike which helped me recover much of my leg use, but my leg will still drag each day after I get tired or it may drag all day.
I do not have any lesions in my spine. They are all in my brain. This constant burning in both legs but worse in left leg and other nerve pain in my both feet, worse in right foot has been constant with no relief for the last six months. My Neuro thought I was in a flare and put me on really high doses of oral prednisone (can't handle injectables or soly) and it helped for only one day. Therefore, my Neuro thinks it is permanent since the steriods did not knock it out.

You are giving me a little hope that maybe it could end one day and give me some relief.

 
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Old 10-07-2012, 05:23 PM   #10
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Re: Neuropathy

brain lesions too can cause the problems. it is difficult to know. The only way they told me it was my t-spine was because they were the only active lesions at the time.

Have you tried pool therapy? A pool exercise in not too warm water might alleviate some of your pain. It is worth giving it a try too. You mentioned a shooting pain with cold water. So you might try varying temperatures until you find your best choice. I get a shooting pain too if I expose my nerve pain to cold. I get relief, briefly before the type or style of pain changes and then it is new pain. This is another reason I have remained with my heating pad.

I certainly hope you get some relief from your nerve pain. I have added you to my prayers.
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Last edited by MSJayhawk; 10-07-2012 at 05:26 PM. Reason: add

 
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