Neuropathy

[witsendmom]

I am brand new here. My 20 yr old son suffers from extreme all over burning sensations (he describes it as the burning pain of touching a red hot car roof in the direct sun, but allover his body) and he has recently experienced periodic loss of use of his arms and legs. They just stop working for awhile. He has had the burning for at least five years but it is getting worse and his 50 Oxycodon pills a month are not enough. The doctor won't increase the amount of pain meds. Where do you find a doctor who will? I am getting desperate. He is begging us to kill him it gets so bad.

His father had neuropathy in the feet and ankles but not near this bad. He used to take 3200 mg of neurontin a day. My son is on 900 mg of neurontin and 80 mg of Prozac. He has bi-polar, OCD borderline personality and clinical depression

We need help. I don't know whether to try to take him to a pain clinic or a neurologist. We have no insurance.

[sbvcrn]

Hello fellow sufferers. I have had PN for about one and one half years. Getting worse. Was in an auto accident 4 years ago. Feels like stinging sand is blowing onto my body. The worst areas are
upper arms, thighs and balls of my feet. What I find weird, and wonder if anyone can relate, is that when the area is really burning, if I actually touch it it is cold like ice. When my upper arms are burning and "on fire", my hands, forearms and shoulders are normal warmth but the upper arms are cold. I am not imagining this as my husband has felt it too. I also feel increased discomfort if a fan caused breeze touches these areas. Going into a grocery store in July and walking thru the frozen foods section is awful...I need a light long sleeved blouse. Rough fabrics bother me a lot too. Am on Neuroton 900 mg/day and hasnt helped at all. Also taking ALA and a thiamine type vitamin...ben something. Had all the tests and everything negative. One neurologist when I told him of the burning said "hormones", hyperventilation...that is not it! Condesending guy (putting it nicely). I finally have an appt. in October for a neurologist who specializes in PN. Hopefully he will take me seriously. My husband has even felt this weird coldness in my arms while I am asleep so dont think it is "psychological" but then that is always the reason when THEY dont know. Thanks for the venting. Hope someday we all feel better.!

[lavender123]

HI,
I ALSO HAVE NEUROPATHY. I TOLD MY OLD DR. THAT I WANTED TO BE TESTED FOR IT BUT HE SAID NO YOU WOULDN'T HAVE THAT. WELL I SWITCHED DOCTORS AND FOUNF OUT THAT YES I DO HAVE IT AND FOUND OUT A LOT MORE ABOUT MY HEALTH, SAD TO SAY NOT THE NEWS I WANTED TO HEAR. I KNOW THIS MIGHT NOT HELP YOU BUT ASK TO SEE A SPECIALIST, AT ANY TIME I WANT TO SEE ANY KIND OF SPECIALIST, MY NEW DR. SETS UP ANY APP. I WANT. TODAY HE SENT ME TO SEE A SPECIALIST, AND NOW I AVE FOUND OUT THE I MAY HAVE TO HAVE MY FOOT REMOVED. NOT WHAT I WANTED TO HEAR, BUT I GUESS WHAT I AM TRYING TO SAY IS ( IT'S YOUR LIFE AND YOU SHOULD NOT HAVE TO PUT UP WITH ALL THE PAIN AND BEING, NOT HEARD BY YOUR DOCTOR) . I AM FROM DARTMOUTH N.S. AND I AM VERY GLAD I SWITCHED DOCTORS, JUST NOT GLAD ABOUT THE NEWS. BUT I DO GET ANY TEST DONE THAT I WANT. IF YOU WOULD LIKE MORE INFO. PLEASE LET ME KNOW.
PATRICIA

[craftyangel43]

I have neuropathy in both of my arms which I have had to have Ulnar Nerve surgery on both elbows and left hand Carpal Tunnel and scheduled to have the right Carpal Tunnel done next fri. (8/15). I have also felt some itching which starts especially on my back and feels like someone is sticking me with hundreds of little needles at the same time. Also now when I go outside even for just a few mins. and come back in I have the burning/itching feeling followed by little tiny clear water bubbles that come up on my skin...not just a few here and there, but hundreds of them, which now have started showing up on my upper legs, stomach and breast also. Not sure if it has anything to do with the neuropathy or not..it just started just a little over a month ago. I am scheduled to see my neuro and regular MD this coming Mon.
Has anyone else ever had the symptoms of the little water bubbles on their skin?
My neuro can have an attitude also and he is hard to get info from. You have to ask him as he doesn't always volunteer to tell you things.
Hope this will help someone.

crafty

[outragousart]

I have had neuropathy for about 5 years now. I also have fibromyalgia and Parkinsons Disease. I only feel my feet if they are in pain, cold, burning or tingling. My hands are just about as bad. About a year ago the Parkinsons meds I were taking (with good results) were removed from the market. I really didn't want to go on Sinemet (the final option). My head was so screwed up and I was so sick of all the medicines, 28 pills a day, I told my neurologist I wanted to get off of everything to see if I could figure out where to go from there. Within a couple days, my neuropathy was so intense I started back on my Lyrica. I think the relief that the Lyrica provided me just let me forget how bad the pain can get.

I know some people don't tolerate Lyrica well, it causes me extreme sleepyness and fatigue. The one good neurologist (out of the 4 I have tried) I found gave me Provigil to help me stay awake and alert. Provigil is normally used for narcolepsy. It is not a type of speed, and isn't addictive. It sure helps me to be able to take more Lyrica along with my other meds.

[batch]

My 24 year old son was just recently diagnosed with Type One diabetes and over the last 3 weeks has been sufferring from severe burning in his feet so much that he is unable to walk . He went to the diabetic clinic in town and his nurse seems to think that it's not neuropathy. The reason being that he is too young and his blood sugars are all under control.The pain keeps getting worse and with a visit to the family physician , a diagnosis of diabetic neuropathy was given. The diagnosis was given without any nerve conduction tests or any referral to a neurologist. He is on Lyrica ( which has not helped to date- 3 weeks on it) and today the pain was so bad that he had to go to the hospital. The ER doctor prescribed pain meds. but I'm not sure what they are yet. I don't want him to be on any prescribed drugs if it can be helped -his too young to live on meds. that make you drowsy and cause other side effects) Does anyone know of any naturopathic or safe homeopathic treatments for his neuropathy?

[lj009]

[quote="batch"]My 24 year old son was just recently diagnosed with Type One diabetes and over the last 3 weeks has been sufferring from severe burning in his feet so much that he is unable to walk . He went to the diabetic clinic in town and his nurse seems to think that it's not neuropathy. The reason being that he is too young and his blood sugars are all under control.The pain keeps getting worse and with a visit to the family physician , a diagnosis of diabetic neuropathy was given. The diagnosis was given without any nerve conduction tests or any referral to a neurologist. He is on Lyrica ( which has not helped to date- 3 weeks on it) and today the pain was so bad that he had to go to the hospital. The ER doctor prescribed pain meds. but I'm not sure what they are yet. I don't want him to be on any prescribed drugs if it can be helped -his too young to live on meds. that make you drowsy and cause other side effects) Does anyone know of any naturopathic or safe homeopathic treatments for his neuropathy?[/quote]

Check out page 2 post by Lj009 about" Rebuilder"

[patwhite101]

Hello Everyone...
I am a newbie here and for the past several days I have been reading and leaving comments and hopefully words of comfort to some coz I too suffer from Neruopathy and have for several years. My Neuropathy started in my left foot and leg below my knees then spread to my right foot and leg. The pain is now savage!!
My Neuropathy is the result of two spinal surgeries in my lumbar spine...L4 & L5....scar tissu is impinging on the nerve that runs down the outside of your leg into the feet. The damage is now permanent. I also have had a spinal fusion in my cervical spine but it has caused me no problems like the lumbar fusion has. I never think of it until someone asks about the scar on my throat.
When my foot pain started to get worse i had to find help, i was in agony!! Because Diabetics suffer from Neuropathy and wear a special made shoe I naturally thought of those shoes for my poor painfull feet and what a blessing they have been!! They have the extra padding in them that I needed. My feet and legs are so sensitive you can't touch them with a powder puff!! Because i am not a diabetic I have to pay for them out of pocket and they are expensive!!
As the pain worsened I, like everyone here, was undertreated. I started serching on the net for any kind of help I could get and that was when i stumbled onto another site...Spine Health!!( Hope i can mention it here.) I found so much help at that site and so much good advice on their pain forums I have to give thanks to them and the wonderful people on it.
To make a long story short....I had to change pc doctors and he treated my savage pain with Oxycodone....relief at long last!! I was on very high doses of oxycodone and percoset for breal thru pain. I can't take Lyrica or anything like it.
My Neurologist referred me to a Pain Clinic and at long last I found relief from my God awful pain!!
My pain Doc suggested a spinal cord stimulator for my pain. I was nervous about it at first but after talking with others who have a "stimulator" on Spine Health forum and learned how it had helped them I knew i had to have the implant!! Instead of feeling pain i tingle from my knees down. The stimulator reduced my leg pain by 100% and my foot pain by 60%!! I still must take Oxycodone for the break thru foot pain but in a much lower dose than I was taking. If you get a 50% reduction in pain they say the stimulator is a success. You trade one sensation(pain) for another sensation(tingling). It stops the pain signals from reaching the brain. Stimulation for pain is not new...it has been around a long time and it works for me. I have a life again!! I am up walking instead of sitting and suffering. I take my little dog on longer and longer walks every day...twice a day!!
I just had my permanent implant on the 4th of this month(June) so am still recovering. I am so lucky to have found the best Pain Clinic in my state and the best Pain Doctors who use this cutting edge treatment for chronic pain. First you have a trial to see if the "stimulator" helps you and you are sure you want one before the permanent implant and it can always be removed if later it needs to be for some reason. The only way they will take my stimulator from me is over my dead cold body!!
I have a life again!! I will be able to do all the things i did before the pain. Awwwwwwww I can garden again!! Isn't that wonderful??
Best of luck to all. I hope all of you who suffer as i have find relief as i have.
Hugsssss to all
Patsy

[Dianne]

I began this post over 2 years ago and in that time I have had some relief from having a nerve stimulator implanted which I would be lost without and I am still taking pain medication. Over the two year time my pain has only increased as time goes on, my pain meds have increased but I am able to function during the day and still go to work and some other activities as long as I'm not out too late in the evening/night. I have been on all the different anti-depressants, and anti-seizure medicines which don't work and I have tried physical therapy, massage therapy (which I still do) and accupuncture and not one of those helps get rid of the pain and my doctor (now seeing a pain management doctor) says that I will have to live with the pain increasing like this for the rest of my life because there is nothing that can be done for me since they do not know what caused the neuropathy in the first place.

I have found that Kadian works best for me, I have only one bad side effect which is constipation but I can deal with that by drinking prune juice or plum juice. My only complaint with this as would be with any of the pain meds is I find that I have to increase the dose every 2 or 3 months and if this continues then what am I going to be like 5 years from now? This "disease" scares me when I think of my future and wonder if I am going to get to the point that I can no longer walk. Does anyone else notice that the pain just continues to get worse as time goes on? I'm just wondering if there is something else that is causing me additional pain. I've noticed over the last 6 months or so that my knees have started to hurt mostly with the same pain my feet get but my doctor said not to jump to conclusions that the neuropathy is moving up my legs. I find it hard not to jump to that conclusion when it just gets worse.

Sorry I am going on and on it's just that I had hoped by this time I would have something positive to say about my health but that is not happening. Plus I have been in a worse mood this week because my pain has been so bad that I have had to take break-through pain meds during the day and it is keeping me awake at night, so I'm a bit "sour" this week. Go to the doctor this afternoon but I already know what is going to be said, he is going to increase the pain meds again. Oh well I guess it could be worse, at least I can manage my pain for a while which some of you are not so lucky to do.

I hope that all of you manage to have a good holiday season. And good luck with your pain management!