Peripheral Neuropathy
 

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,

Thanks for responding
 

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 :)

mel and 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

I also agree--
 

--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).

Trouble responding
 

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

Eileen:

First, did your husband see an orthopedist???

Are you saying that the medical people have told you "this is not related in any way shape or form to his back"?

And by the way, Alan got his operation two weeks ago at Beth Israel Hospital (the ortho guy works out of there). So far so good. Sorry you had such a bad experience at Beth Israel.

I just want to clarify that SOMEONE told you "it's not his back, we don't know WHY he has PN".

Is this what happened??

And you are responding just fine. When you want to post on this thread, just hit the reply button, type your post and hit the enter button on your keyboard, easy as pie.

well
 

like most he is worried about money,thus stress..You are doning well
last thing to worry about. Do you have anyone that could go with
him,the buddy system helps,very must. I'm going to tell you as others
PN is frustrating,and very time consumping as well..My Dr. put me in
hospital for 3 days to do many tests,at all hrs. ha.She had Orotho;s
ra drs. as well..I'm am wondering without the tinging,burning,ect
'm a bit confused,but keep posting,very smart people who care here.
Good luck to you both. Sue

Hi. I have pn but similar to rsd and unable to work. I have been dealing with this for a year. Have had many tests and repeats and I am the constant three of every at least sometimes 5 of the same kinds of docs and pain clinic. I too have tried many meds. They have wanted a scs but am waiting. May I ask what his mri was? Was it both the brain and spine? My severe issue is my legs but still had that mri and now am having back pain which may be seperate or connected. What I will say as the year has went on my symptoms have changed but seem to be part of everything. As for your support, I know how this kills my mom. She is my strength and hope truly I would not be here with out her. I know this effects the whole family but I think listening to your husband,asking what he needs,and having him hold to hope.Not beating yourself up but trying to stay calm. I know my mom being calm which I know was an act cause I could tell but regardless helped so much.Truly for months I thought I would die or had cancer but my mom kept reassuring me that it was not and we would get me help. I know my pain clouds my thinking. My mom trys to help me see the light and finding new docs which I have seen in Oh,MI,Ca.Never ending. Lastly and I know you want releif but just be careful into jumping into treatments. Just weigh the pro and cons and ask ?'s. If I did everything I would have had scs,nerve surgery,catheter,etc. Hang in there and make sure to have you time for a breather.

That was my first thought too! If that's the case than there's an underlying, treatable cause for the PN. And that's wonderful news! I hope! If they treat the spine issues the PN will clear up.

The spine, etc., needs to be checked out.

Started with back
 

Hello Melody

He saw 2 neurologists (one bad one pretty good). This did all start we thought at work as a WC claim. But WC gave us such a hard time about everything we gave up once they said PN was not due to his back injury. It has never been clear to us. 2nd neuro at first said PN could be result of injury but was not actually stating on the record?

He has not seen an orthopedist which I have told him about. I have gotten so much information from this site. But I think due to his depression he just can not deal with anymore Drs. But I do continue to push him to do things. He is starting Zoloft tomorrow so maybe that will help somewhat?

I am also sorry about the BI. But I do wish your husband well! Maybe it was just a bad day for people?? Maybe he just works himself up about everything (I should have gone with him). We are now waiting to have the IV lidocaine drip done on the 28th. Again not sure what that is supposed to do??

Hi.

Without a doubt, your husband needs to see an Orthopedic Surgeon. Certain tests have to be done. X-RAYS, mri's whatever needs to be done to completely RULE OUT BACK PROBLEM, compressed nerves, discs, what have you.

Once the back is completely ruled out (like it was with my husband), and they still don't know why a person has PN, then they start doing the auto-immune testing. Spinal taps, special blood tests.

You'll get lots of informatiojn on these boards, but I have a hunch it's not YOU who needs the information, it's your husband. And from what you have written, he's not the best person to be talking about these things to.

He's probably having a very hard time dealing with the pain and depression.

Hopefully he can get a handle on his depression with the Zoloft (My husband takes it and it's a life-saver in that department). The pain issues, well, you need a good pain-management doctor for that one.j

So hopefully, you can get the back thing completely ruled out. See, when a person has PN and doesn't know why, they call it Idiopathic.

They have to RULE EVERYTHING OUT FIRST. Even then, many people never find out why they have PN. They just treat the symptoms.

Not an easy thing to hear, but I am trying to be honest.

But really!!! when you said this happened after he hurt his back, well, I went UH OH.

You really need to get him to see an orthopedist. That should be your next stop.

I've seen 4 neurologists since getting PN. Three ranged from arrogant, dismissive, and discouraging to downright abusive. One was adequate. While arrogant, at least he tried (unsuccessfully) to get a differential diagnosis of something treatable.

Why do these incompetent arrogant SOBs make such big bucks and not lose their specialty certification? They might be able to pass tests, but they don't help patients. Any medical help I've gotten for PN over the years is from this and previous forums and my wonderful and super-competent primary care physicians.

Mel that was very well done,they him you love him,and you want to make
sure it not his back. If he saids no make the appointment.Ha when you
don't feel well it helps to have someone take over..But then hand it back
because he has to learn he can help himself. When you can go,that
will be good But make a list of questions,tell him to give to any Dr.
and just put will you answer these question's,it would help us both.
Leave space for Dr. to answer..Mel husband is a sweety take a look
of his night of the operation utube..

Mel now Bob broken his wrist he at ortho Dr. yelling I'm sure..
Hugs to all Sue

The best thing for you and your husband right now is to learn what you can, and not accept any negativity from doctors. Check out our "Stickies" section on top of the main listing for a huge amount of information and links to very helpful websites. The link is http://neurotalk.psychcentral.com/thread177.html .

Is your husband seeing a physical therapist? It sounds like he may have sciatic or other nerve compression in or near the spinal column. That may respond very well to a combination of traction, massage, micro-electric stimulation of the compressed area, cold and heat therapy, and anti-inflammatory drugs. A good primary care physician can do a screening assessment and make the referral. Sadly, I've not met or heard of many neurologists who think, learn of new research and treatments, or make that much of an effort for their patient.

Time is of the essence here because the more chronic PN becomes, the harder and lengthier it often takes to stabilize and reverse.

I agree ,and you may very well be right,I go to a good PT Hospital,
I love everything you said David,but not all PT are gentle and sweet.
I like my Neuro very much,if you never met a sensitive one how
many did you say ,you went to 5..

If there's one thing I agree with is check the stickies learned from a very
smart lady,how much they do help. If he does have a spot close to spine
hip ,down leg.. Try the 20 mins. of ice pack,then 20 mins. of heating pad.
It might help and save some money if not,spine or orth Dr. He has pain.
I'm a Diabetic 2, if he's overweigh he should loose it,wouldn't hurt Diabectic
or not.ha I believe in meditation good if you know someone to teach or
go to library ,good vido's..But some people here need medication,no shame,
I go that way now,because I need it. PN is not so easy to diagnose as
say broken toe,pain is no fun a tiny bit to tell you somethings wrong one
thing,but if he's having hard time walking,sleeping,turning in bed,,burning,
tingling,makes you cry alot..Read the PN posts,don't be afraid of asking
questions..most of all it's a pain you can see something is wrong ,you don't feel it but he does,and you don't always understand,if you ask him a question,please listen.

So many of us come here because just being able to say it hurts so bad in the calve of my leg what's that,and you hear i've had that to,what a relieve..We can talk,you can pm someone if you need,just loook under members click that up to left of post and find name just take your time you will learn..It's hard he may need to relax,weather is getting better.Have
him try to take it easy,going to be a little rough on both of you..There are
people who know alot which Drs in what areas,nobody wakes up one day to
and saids I want PN and give me every kind you can think of,It's usually I
want my old life back,we do the best we can and sometimes i just scream,
but it's a good idea to worn anyone that's around..Hugs to all Sue PS
I take it back breaking your toe hurts.

neuropathy or something else is ruining my life
 

Hi,

I seem to have severe neuropathy though I only got a symptomatic diagnosis from the ER. I don't have health insurance so I have not had any tests run yet. I do have an appointment with a volunteer clinic in 2 weeks and I'm hoping they can get me in to see a neurologist quickly. It all started 3 years ago with tingling and occasinal numbness in my left foot after I smashed my little toe on a table leg. Now, in the last 4 months after a fall walking into a store with wet floors I have intense burning or cold numbness in both feet, horrific pain, as if there are little hard shelled creatures rolling around in both legs and excruciating vise like pain in my genitals. I'm only assuming that all of this is related to the toe smash and the fall but I really don't know anything for sure. Maybe I need to see an orthopedic doc..? I have been on 900 mgs. of Neurontin for 3 weeks but it doesn't seem to be helping and is making me very irritable. I don't know whether to cut it out or double the dose as I read that other people are taking much higher doses, some with success. Does that mean I'll be twice as irritable. The overall pain is worse on my left side and I walk awkwardly with a definate limp. I have found that icy or hot circulating foot baths, depending on how my feet feel, with epsom salts, provides relief for a decent amount of time and sometimes light massage if I can stand it improves circulation. I take an extended relief opiate called Opama 2 or 3 times a day and I find it helps better than other pain meds I've tried and it doesn't nterfere with sleep. I also take flexeril, a muscle relaxer, at bedtime to help with sleep, which is hard to come by these days. I find some relief but I do feel 'hungover' most of the time, but it seems a small price to pay compared to the relentlous pain. I have to wear something loose and comfortable on my feet at all times, either lined slippers or plastic clogs with socks, regardless of whether my feet are burning or freezing. I don't want to be bound to all theses medications for the rest of my life, but right now it's the best I can do. I am reading lots about vitamin B12 and other supplements that can be helpful. I'll be getting tested for deficiencies at the clinic. This disorder, whatever it is, has disabled me to the point where I cannot work and sometime I can't even drive. Fortunately, I have a very supportive sweetheart who understands what I'm going through,as I do with her, as she is on disablility for liver problems and fibromyalgia. Having that mutual support is crucial and helps keep the depression at bay.
I know I'm sort of rambling here but the severity of my condition has come on pretty quickly and I'm just relaying my experience in the hopes that it will be helpful to others and trying to learn as much as I can by hearing other peoples experiences. I hope some of this has been helpful to you. John

@jlay:

I think you should read our RSD forum here, and perhaps post your situation to those members, to see what they think.

RSD can come from a injury/trauma to the foot, and spread and be severe as you describe. It can baffle doctors too:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=21