Newbie need info on pain meds

[smartsally]

I know there are many threads on meds and other alternatives and I will read them all. Just thought I would ask incase anyone is interested in giving me a one on one tutorial during their spare time as well.

I have PN from diabeties and am trying to learn as much as I can.

[smartsally]

Something else I would like to ask. I tried the AV chat area and a plasma TV window came up and when I clicked no it put a page up that would not close, minimize or leave me to do what I want, what happened there?

[WonderDerek]

What is PN? What kind of pain are you having? Description could determine if it's neuropathic pain, or what I call "physical pain." My back pain feels like a wall of dump trucks continuously smashing into my back. Physical pain.

Neuropathic pain, in my opinion, feels like a sharp, burning sensation. Also feelsl like someone stabbing the area and turning the object that you were stabbed with.

There are different types of pain medications, so that's why I asked. Gabapentin and Vicodin, for instance, work on different types of pain in different ways. There's also another type, that I can't remember the name of, that works by somehow inhibiting some messages in the brain or something. Hope I helped somehow and didn't just tell you what you already know.

[jccarolina]

PN -peripheral neuropathy

My husband takes Cymbalta and is on the Duragesic paich. They are talkin about puting an implanted spinal stimulator in his back at a later date.

I'm just on the 'ol Morphine Sulphate ER

[smartsally]

Sorry, Pn is periferal neuropathy, meaning feet and arms. It is in my feet and has been for a few years and now seems to be getting to my hands. Is caused by diabeties and is like you said, stabbing and twisting and radiating to other areas, burning and feeling of freezing and cramping. One day I can actually have one foot feel like it is frozen and the other feels like it is on a huge amount of heat, That is hard on the head. Heat is my only relief so far and it is not supposed to be used because it can kill more nerves. I have some areas of the feet that are numb, edges of tows and edges of heels as well. My visit to DR about 6 months ago found that the jump reaction in both heals is gone. I can still walk and still work. Sometimes in pain enough to drive me nuts but sometimes it is worse when I am home and want to sleep and when I get up. My first few steps when I wake up are scary and painful. I have crashed into furniture and fell because it is like I have no balance.
I am afraid to take drugs because I am under the understanding that most of them are for scitzophrenia or were origina;;y for that.

[David Berg]

Welcome, I hope you can find information to help you out. Understand that terms like PN aren't too common around here because it's most common for folks with SCI to have neuropathic pain caused by damage to the central nervous system. Still, there's a lot in common, especially in the challenges to find an effective treatment so you should be able to get some good ideas what other folks are doing.

[rfbdorf]

Smartsally, I strongly recommend that you see a physician specializing in pain. By reading here you will accumulate a lot of knowledge about neuropathic pain, but only through the pain specialist will you have a chance of actually getting some relief. Your regular doc doesn't have the specialized training needed to help you. Don't be worried about what other uses medications may have - if you experience unacceptable side-effects (this is also where the specialist's knowledge comes in useful), you can always stop the offending med.
- Richard

[smartsally]

Ok so I might have stumbled into the wrong forum then, I was directed here by someone and thought it was for all types of neuropathy.

I have been told about several drugs and that was my problem, I got confused after the third one they listed so I got worried when others told me to be cautious.

Does anyone know a site where I can find people with my perticular problem? Last one I found gave me one reply in about two months and there must be more with my problem out there. Any suggestions welcome.
Thanks for all your help so far.

[jccarolina]

www.geocities.com/HotSprings/Sauna/2443 (http://www.geocities.com/HotSprings/Sauna/2443)
www.neuropathy-nca.org/index.html (http://www.neuropathy-nca.org/index.html)
http://health.groups.yahoo.com/group/diabeticneuropathy (http://health.groups.yahoo.com/group/diabeticneuropathy)

Here are a few I know of. My husband has Diabetic Peripheral neuropathy, but the symptoms and outcomes are about the same.
Hope this helps.

[smartsally]

Thanks jccarolina, I will definatly try those out. Good to have people who know these things when you feel lost. Seems the more I think I know the more I realize I don't know. ;)

[David Berg]

Thanks jccarolina, I will definatly try those out. Good to have people who know these things when you feel lost. Seems the more I think I know the more I realize I don't know. ;)
That's a sure sign that you're learning!

[smartsally]

Just thought I would let you all know. I have checked those sites out and they were a lot of help. I found some great documentation in there that really explains my problem which is good because it really hard explaining to someone what is really wrong when except for the fact that you say you are in pain and walk funny everything else looks normal. It is honestly the first time I have ever seen it written in such detail. I was just called into a meeting at work and am now at threat to loose my job because of too much time taken off. I am going to a help program where they help you deal with personal issues with your work place to get them to help me figure out what to do next. My work place can see why but like those who take time off just to do it and abuse it, I am being put in the same catagory because they don't seem to care that I have a condition that makes it hard for me. Looks like disability may come sooner then I had hoped it would. I am in a union situation and we have a coverage plan that work pays for and you would think they would be more willing to help rather then see you slip into the plan and end up not working at all. I have to ask jccarolina, Is your husband still working? And how is he coping with it? Also how long has he had it? Any info will help. Thanks all for your input.

[jccarolina]

Hi Sally, glad those sites were of some help. If you do a general search for PN on the net you can find alot more also. Check with your local hospital too (the education Dept.) and see if they have any support groups in your area, alot of the diabeties groups have good info too because they deal with the same thing.

My husbands been disabled for 5 years now, he used to do construction. He has alot of other problems also and because of his back and chronic pain he doesn't get around much.
His PN didn't get bad till about 3 years ago when his diabeties got worse and had to go on insulin, and his coping skills can be weak at times because he has a pretty low threashold for pain. Alot of times he wishes he couldn't feel much from the waist down like me. (his legs and feet are the most painfull)

There is a protuct over the counter that has been a blessing for him called Diabetaid. You can find it in the diabetic section of the drugstore or Walmart. It's a lotion that has Capsasin (sp?) in it. It helps alot with the burning and tingling of PN.

If you have anymore questions you can always email me, and if I don't know, I can always ask the hubby. :)

[smartsally]

Thanks for your quick reply, it is good to have someone with your level of information on my side. Just so you know as well, I do exercise and have almost a complete gym in my basement. I have a sauna and tredmill that I try to use every day. As well I bought a house that has a one level access with ramps so I don't have to do steps and have put thousands of dollars into care equipment (massagers, magnets etc.) that helps me to feel better on a daily basis. I have wished like your husband that I could remove my legs just so I could sleep and then put them back on later. Funny way of thinking maybe but it helps to dream now and then too. My new house used to be a small care facility so everything is here if I end up needing it including wide doors lots of space so I don't smash into furniture and door casings like I was before I moved here.

[jccarolina]

Dreaming is cool but reality can suck. It can be a pain in the ass to be stuck on 4 wheels, so keep up the excersizing and don't loose the function in those legs or arms. It may hurt to do the excersizes but the ol sayin is "no pain no gain" LOLOL.
Your home sounds great, I wish mine was more assesable. I live in 'ol base housing from the 50's so I'm stuck with the standard doorways and such. The only room I have trouble getting into is the bathroom and I'm finally getting a ramp I hope.

If your having trouble sleeping at night because of your legs it sounds like you might have restless leg syndrome. My hubby has that also. Some how it seems to tie in with PN. When I used to have RLS I was on the older meds but they have a few new ones now. If you don't have a neurologist your seeing, find a good Physiatrist, they seem to help a little better in my oppinion because they cover more than just the nervous system.

Have you had an EMG (Electromyogram) yet?

[smartsally]

Yes I had the Electromyogram if it is the one where they hook up probs to your legs and arms and hit different nervrs to see reactions and movements and pain responce when I was first diagnosed. It was done at a neurologists office. At that time there was some damage and some nerves being affected at different levels. later they spotted the lack of responce in the backs of my feet when the reflex tap was done. I still am trying to find out if that is what people refer to when they say "drop foot"
As far as restless leg syndrome, I thought about that too but mostly the pain and temperature feelings are in my feet and makes me kick a lot in my sleep. It wakes me up because I am trying to push my feet against each other to get rid of a pain and it most noticable when they are sensitive to friction that I am causing in my sleep.
So far the pains in my legs are a sharp pain that hits and goes and comes back a few times or more then stops, Pushing on it seems to make it go away for now, also I have had a few of those in my hands.
I have to admit that this web thing sure helps because I don't think I would ever learn this much anywhere else, seems Doctors are limiting what they will tell me as if they don't want to scare me or something. I have been going to the diabetic nurses courses for the past year and some as was suggested earlier here and they were informative but only to what medical knowledge they are given. Not one of them has ever felt it so I feel like they are reading to me from a test book. You can never close your ears to what is learned and written but having a partner in the same shoes like I have found on these sites is what I had been looking for for a long time. Glad I am finally getting there.