Pain and MS: Neuropathic Pain

Hi Julie,

I can understand your feeling desperate.  Glad about the Trileptal, but sorry you get to a 6 or 7 pain level sometimes.  Does the Vicoden help at those times?

Distracting yourself sounds as if it works, but keep your activities relaxed.  I would suggest you take short rests, but does that give the pain a chance to take over?  Rests would help with the fatigue.

Tell your doctor about your catch-22 situation, and be sure to let us know when you find a solution. 

Hi David, 

Many sources refer to go both paresthesias and dysesthesias as if they are the same. Others seem to differentiate between the two 2 saying they are similar or possibly even the same, and they don't usually give details. However, I did find one distinction. WD tells us Paresthesias are experienced in the absence of any specific stimuli; dysesthesias are a result of specific stimulus. The only specific stimulus I found what “light touch.” Not much to go on there, but they must be at least closely related. This may be just another example of MS confusion.

I think you’re right about the pain scale. Sometimes those nagging pains and aches just keep gnawing away like a dripping faucets that keeps you awake. It is always there and you are always aware.

Laura, I wish I had an answer for you.  I hope it does eventually go away. 

Tell your doctor the steroids are not only not working, but are making it worse.  There may be something better.

Here are a couple of tips to help you rest.  It may sound lame, but they work for me most of the time.

First, practice deep breathing.  I am not talking about big gasps of air, but slow, long inhaling before slowly exhaling. Start and end your day -- I do it in bed.  Then, any time during the day when you feel stress or pain beginning, take three deep breaths. It doesn’t stop the pain or stress, but it helps you cope.

Second, try stretching.  Yoga is great and I have heard Tai Chi also does a good job of disciplining your body.  At the least, stretch your legs, arms, and trunk throughout your day.  A physical or occupational therapist can help establish a program for you.

Thank You that does help and when I was doing yoga I really enjoyed it, I have to make myself go back.  My doctor is very good so I am able to email them at anytime and they will respond. I will be going to the doctor Monday. I just want do things and not feel like I am doing harm to myself, but staying in bed all the time doesn't help my childern either.  In time I will figure out the balance that will make everything go smooth. 

Oh Merely Me, I feel the same way about those names!

At first I included none of those names, but just described the pains because there seem to be few “person friendly” alternatives.  I was afraid it was unfair not to validate the pain by including the names.   It’s hard enough to feel the pain without having to memorize which “thesias” to call it, so can't we name them after a person or something? 

To add to the naming confusion, like so many other things about MS, there are no clear distinctions between them. Either they overlap or they are really different degrees of the same thing or they are the same thing with different labels. Sounds typical of MS documentation.

Now the jaw.  Yes, it could be MS, and no, not necessarily.  Surprise. I could guess a few things, but it would be just a guess, and I do not want to do that to you.  Add it to your list of things to discuss on your next doctor visit.

Isn’t it funny each time we feel a pain or even a flicker of a pain we wonder if it’s MS?  Not so funny, but a real phenomenon. Just another unfair aspect of MS.

I hope you find the problem and it’s something small and treatable. Please let me know.

Hi KJ,

Wow.  I have TN, but I don't know if heat triggers an attack because I do my best to stay away from heat.  Look at the triggers, though, they include simple things like brushing teeth, touching your cheek, or breathing. I have experienced attacks from each of these, including breathing, so it seems possible heat could do it, too.

There are a couple of medications that work for some and that may be something to look into.  No one should have to go through that pain. I take Tegritol and have not had a major attack for about a year.  I know of others for whom it does not work. It might be worth a try to talk with your doctor. 

Thanks Vicki,

Symptoms of pain are not one of my bigger problems. These are just some unusual things that have gone on with me recently and it seemed really timely considering your posting. It seems that heat brings out an increase in symptoms that people have already had (exaserpations/flare-ups such as vision problems and fatigue), but not so much with new symptoms.

KJ

Hi Eileen,

 I hope you have found the statements on treatment and alternative treatment. Of course, these are very general, but perhaps they can give you an idea. The best idea as always is to talk to your doctor who knows you and your symptoms.

Good luck.