My husband has been diagnosed with PN about 3 months ago. But he has been in pain or about 5 months. He has tried many meds and has been unable to take them because of side effects. His mental state is not good & we are trying to get him help for that. He has an appointment with a pain clinic today. The neuropathic pain makes it very painful for him to walk Which he now is unable to work. This has taken a toll on our lives. Just nice to share with others in this situation.

Hi there.

Been down that road when my husband was diagnosed with PN 15 or so years ago. He went to pain management and he got the Fentanyl Pain patch. The relief was phenomenal. But be advised, there are side effects (you don't go to the bathroom regularly anymore, but there are meds for that).

But my husband's quality of life dramatically changed. He did the fentanyl patch for 2 or 3 years until the strength had to be increased and you can't go over a certain amount of the fentanyl.

But his life really changed when he found a chiropractic neurologist who did adjustments and really changed his life.

He has ivig infusions once a month because he has auto-immune stuff going on also.

Neuropathy is no walk in the park. We found that regular massage up and down the legs (always toward the heart) greatly helped my husband with his pain.

So I've learned to give great massages.

Also when he sits at the computer, we have a Biomedics shiatsu thing that goes up and down his spine. The rollers knead his body. Must bring all the oxygen to his cells because that also greatly diminished his pain levels.

Takes a combination of a few things, but you have to try and find SOMETHING that works.

In my husband's case, it's massage therapy, ivig, and living with me (I make him laugh). And he isn't on any pain meds. He couldn't tolerate the lyrica nor could he tolerate the neurontin. My husband also was put on zoloft to help him deal with all of this. He takes alprazolam to sleep at night. Thank god for that.

Do you have a diagnosis as to why your husband has PN??

Take care,

My husband was diagnosed back in the beginning of January. He has been in pain since Sept 4 08. He was lifting a very heavy box and felt his pack pull when he did it. All trouble started after that (back pain, burning inside thighs, moved down to feet and now stabbing in his feet along with sharp pain near his toes). 1st neurologist (who denied WC claim) we went to was an extremely cold invidual. Basically after tests (emg, mri et...) diagnosed him with PN. Tried different drugs (1st neurontin then several others) He could not take them. So Dr. basically said this is the treatment and that was it. We then saw a 2nd neurologist who did try and help but I think he is at his end. Problem is my husband is so sensitive to meds. Sorry I am going on and on.. I just can't believe this is happening to us. Our lives are totally in disarray. He stopped working last week because he can just not take the pounding on his feet. I know he needs some kind of meds and hopefully the pain clinic at BI will help.

I wish I could be as helpful (cheerful) to him as you are to your husband. I think at this point I am more of a hazard than a help. But you have had a long time to deal with it I guess. Hopefully I will do better in the future.

I have never written to anyone before so I am not sure how this all works. I might be blah blah blahing too much. If so, I am sorry.

Thank you for listening.

Eileen

Hello,

I too was diagnosed 5 months ago with pn, but had the pain in my feet bad about 8 months ago and when the pain first came on, I couldn't walk for a few days. I could only walk on the sides of my feet. Let me tell you, it was too difficult to take care of my 4 year old. Thank God for my parents and for my husbands job letting him change his hours for a few months.

In November my doctor put me on the Fentanyl patch and like Melody said, it was a life saver to me. I felt no pain. Not only did I have feet pain, but my lower back went out on me too........ so to not to have to feel that pain to was terrific. But yes, you do have to watch out, eventually I had to increase the mg about a month later and I was getting a side effect from it. It was like an elephant was sitting on my chest. I could not stand it, but tolerated it until mid Jan. Like a dummy, I took it off cold turkey and had the worst withdrawl symptoms from it. Don't ever do that unless your doc knows about it. YIKES!
As soon as the patch was out of my system I could feel every little pain in my body. OUCH!! Unfortunately the patch worked for a few months and that was it. I am now taking Cymbalta and Lyrica and haven't had any bad side effects with these. I still feel the pain, but it is not as intense. I also or my husband massages my feet for me and that seems to help alot. Plus when the pain gets too bad I take tramadol. I also take ambien for sleep. It's a shame, but I have to have sleep medicines, otherwise I wouldn't be able to sleep because of the pain.

I know what you are going through because this has taken a toll on our lives as well. My husband has been very supportive and has tried to get me help. He can't stand to see me in so much pain. The stress I think landed him in the hospital for about 5 days. He had double pneumonia.

I just hope and pray that your husband can find some relief from the pain. It is so horrible to be in constant pain 24/7. Keep us informed, it also helps to talk about it.

Take Care,
Michele

Eileen, you know I have had a bad neurologist too. Someone else I know has had a bad expierence with their first neurologist as well. I don't get it........ are they all insensitive??

My new neurologist has done more for me now than my first one did. The last appointment I had with my first neurologist, he asked me how I was doing and I told him I felt like my neuropathy was moving into other parts of my body. He said, well thats what happens when you have neuropathy. He didn't even say ok, well lets do some tests to find out whats going on. He just said to me, lets increase your medicine by one and see you back in two months. When I walked out of there, I told myself time for a new neurologist. My new neurolgist is taking me off my neurontin & tegratol and putting me on Lyrica, I am taking the cymbalta for the depression and the pain.
Hopefully the pain management doctor will be able to help him out. I am going to mine next week to have a epidural shot into the disk that is bulging. He is going to place the medicine on both sides....... wouldn't that be something if that took care of my foot pain too? We can only hope and pray. Anytime you want to talk just chat away....... I am on here a few times a day. Take alot of breaks at work to check this site out and to stretch.

I must say, (and somebody back me up here), if he was lifting something, and something popped...and he has been in pain, well, to me it sounds like a visit to an Orthopedist might be in order.

Have you done this already.

Like I said, in my husband's case, the chiropractic neurologist literally saved his life. If the ortho is a no go, might be worth a visit (to a chiropractic/neurologist, that is if you can find one near you).

I assume, he's had back x-rays, etc. etc.mri's????

If so, what were the findings??

I agree with Mel, any pressure on the spinal cord can cause trouble like this, usually [but not always] lower back pressure can affect the the lower extremities and cervical spine can affect the arms & hands, an MRI would be the shot to check this out properly.

Brian

i hope anything helps,been going through this for years..what tests has he been through? i would have a ortho take a look,mri i hope was done..i'm
not doing so hot right now,so please escuse. sue

--that a spinal/orthopedic consult is definitely in order.

The trouble is, symptoms of peripheral neuropathy can be exactly mimicked by those of spinal cord problems, or of radiculopathy--damage to the nerve roots nearest the cord (a special subcategory of neuropathy). Symptoms can include pain, numbness, weird sensations (parastheses) . . .this is part of why investigations into neural symptoms are often so time-consuming (and costly).

If you haven't seen it before, go to the www.lizajane.org site--these spreadsheets were put together as a way of tracking just about any test that might be relevant to neural symptoms (and of suggesting tests to reluctant doctors).

What kind of testing has he had? He should at least be getting MRI's of cervical/thoracic/lumbosacral spine, and probably EMG/nerve conduction studies to see if any disruption in neural signals between spine and extremities can be localized (e.g., stemming from spine, vs. nerve root, vs. farther along the peripheral pathways).

Hello All

I am very new at doing this and am having a hard time trying to figure out responding??

My husband did have an mri and emg (which diagnosed the pn). First neurologist said it is ideopathic. We just find it hard to believe that it is typical neuropathy. No burning, tingling, pins & needles etc... No trouble sleeping. Pain goes totally away?

The 2nd neuro sent him to a podiatrist which did nothing. He has tried him on so many meds last one being Lyrica which has not helped.

He went to Pain Clinic at Beth Israel Hosp yesterday & that wasn't the greatest experience. Unfortunately I did not go with him because he insists I go to work. Now that he is on disability he is scared about money all the time.

I have to say I was very disappointed with the way he was treated (I even called today and maybe felt a little better but not much). Because he can not take meds they are going to do an iv lidocaine drip. I am not sure what all of this means (they tried to explain but a little confusing). Not sure where we will go from there.

I want to thank everyone for their information. I am printing out so that I can write some things down when we go back 3/28.

Thank you sincerely.

I really do wish all of you the best.
Eileen