Help with Peripheral Neuropathy
 

I really appreciate having a group like this to learn about this condition and to share knowledge, and encouragement.

My husband has asked me to find out as much as I can about his condition. He had this condition since November of 2009, and he is in considerable pain. But in October of 2008 he started having some other symptoms and I am not sure if they are related. He has asked me to find out as much as I can about this, because it has dramatically changed our lives.
My husband is 43, and has never had any problems medically at all in his life. It all started in October 2008 when he started having a weird itching, it was not really bad just annoying. He went to the doctor and they thought he might be allergic to the laundry soap or have allergies. They said he had high blood pressure and he started taking lisinopril. When all the tests came back negative, his itching got horrible bad in July of 2009. He was sent to a dermatologist who said he had a staph infection in his skin. He was on massive amounts of antibiotics and skin creams. Although the staph infection went away, he still has the same annoying intermittant itching like he started having in October of 2008.
Then in November of 2009 he started having numbness and tingling of his feet. By December it got alarmingly painful. They did a series of tests, and found he had peripheral neuropathy. He is on gapapentin, and oxycodone and xanax. It is like I am living with a invalid because he is so out of it. But I do not say anything because I know he is just trying not to feel the pain. I did find this supplement on the internet and he started taking it a week ago:
from a website called **

We have an appointment with the senior neurologist on Thursday and hope to get some answers. someone told us that the lisinopril may be the cause so my husband stopped taking it 5 days ago.
Any suggestions anyone would have would be greatly appreciated. I did see on the internet this type of socks that have transmitters to help with the nerves of the feet. I wonder if anyone has tried those and if they work. Thanks so much sorry this was a long post. Thanks Monika

Xanax is not a good drug if you have PN. It causes a withdrawal like syndrome every time it wears off, and it is very much like PN pain, if not PN pain. It can not be stopped cold turkey without severe physical issues.

I hope your husband can find a cause for his PN. Hopefully the neurologist can assist you.

Was the med Xanax or Lisinopril?
 

Was it for anxiety or for blood pressure? IF the latter? See this:
http://www.merck.com/product/usa/pi_...rinivil_pi.pdf Go to page 11 and read about the side effects. Do they 'fit'?
I would expect, so don't be disappointed? That the doc is either gonna go no problems found, or set you DH up for a slew of tests! Be sure to take a note pad and write what all will be done...and then web up each test and find out how to 'prepare' for them and then know before you go what's to be done. Results? ASK or even DEMAND a copy for your own records! It can't hurt to have such paperwork back-up for the future-never know when it will come in handy [and it does].
I do know that for myself, Gabapentin and I did NOT get along! I was a walking, sort of talking, semi-zombie when I took it.. It took me 3 more tries drug-wise to find something I could have my mind back on. It worked for a few years, then didn't. So I stopped. I now only take pain meds when it's really bad - most things, even the big ones only take a slice off the top of that pain. I've had this PN for 7+ years and others here, wiser than I, have had it longer.
Monika? I truly hope you get the help you need and soon! Keep at it, it's at times hard work? Often down lots of blind alleys, but getting any part of LIFE back is worth it! The sooner the better and I'm pulling for you and your husband! Quick appropriate treatments can help ever soo much and I am hoping that you find them and can get them! :hug:'s - j

Hi Monika
 

My heart truly goes out to you......:( BUT! You have indeed found a WONDERFUL place for the knowledge and encouragement you are seeking for yourself and your husband....

There are so many very knowledged folks here who will give you specifics or ideas of what may possibly be his 'culprit'.......otherwise, you will soon find out that this mysterious condition is basically a process of elimination.......
As the others have already suggested, it's imperative that you have a 'handle' on what the Dr's are or are NOT doing for your husband....
One VERY convenient way is via the 'Liza Jane Spread Sheets'...... you will find this and other very important info at the top of this page in the special section called the 'Stickies'.....
By gathering this information, you will be much less likely to become completely overwhelmed by everything.

Each person here who has battled PN will have certain little nuggets of interest....and as you get to know the others, you will soon realize what a wonderful 'family' this forum really is! :hug:

And speaking of socks......i wear mine inside out..... because the inside of socks feel like sandpaper to my feet :p......
Howz THAT for a kooky 'nugget' ?!

It's good to have you, Monika
:grouphug: We're all here for each other!

Do you know what antibiotics your husband took?

Some of them cause neuropathy. Flagyl and fluoroquinolones like Cipro, Levaquin and Avelox cause PN.

Does he use a statin for cholesterol control?

I do not see papers on PubMed linking lisinopril to PN. In fact there are papers that show the reverse, that PN improves with lisinopril. Many are animal studies but there are some on humans with diabetic neuropathy.

Supplements like B12 and Vit D can be tested for before starting with them. That would give you an idea if you need them at all. People who are not deficient typically do not respond to them when taken extra.

Welcome
 

Everyone else has given such good advice about resources for your husband, I thought I would offer something that might be helpful for you as your husband's partner. You are, after all, living with his PN as well.

There are two great articles you can find at this website:

Pain Treatment Topics

About midway down the page you will find the heading: Chronic & Intractable Pain. The two articles to look for are: Surviving a Loved One's Chronic Pain and Intractable Pain Patient's Handbook for Survival

You have found a great place for support and knowledge, and we are glad to have you here.

Thanks so much I printed that up for my husband. thanks for your support and encouragement. Yes, I am going to be prepared for this appt. I will bring a note pad. I hope I can contain myself and not get too emotional. I hope they just do not say "sorry there is nothing we can do, go home and suffer." My husband is on his last straw. He has a super high tolerance for pain. We have been together for 20 years, and he never was a whiner, ever. One day he had a job site accident in which a skill saw cut his thigh and he required 30+ stitches, he never complained, his coworkers were amazed. But now every time I look at him he is wincing from pain. We have a freelance business ** but Kurt is unable to do anything right now because the pain is a constant distraction since July 2009. This was our dream. Now we only have one customer, and he is very patient, thank God. I told him what I read on this website, that it can get better. The primary care doctor tells him over and over that the pain and numbness is permanent. This is sooooo upsetting for Kurt to hear.

Thanks Dahlek, I wrote a long response to this but I think I did it wrong and it will not post. Oh well. Thanks for your encouragement. I printed that pdf. Yes, he did get some of those symptoms. I wanted to ask though the doctor tells Kurt over and over the pain and numbness is permanent. This is very very upsetting for my husband to hear. Is this true? Because I am reading posts that say it does get better with treatment. I will bring a note pad to the doctor appt. What should I ask?

Hi I am sorry abour your husband. Has he had complete bloodwork looking for auto immune etc,mris,emg/nc? I agree about bring the paper? Before the apt a list of ?'s. Some ?'s I ask are about other meds,procedures,testing. Also bring any records you have. I keep a binder of every test result and apt I have been to for the next doc. As for socks i too turn mine inside out and stretch them way out. I was using a medped kind that was non binding ankle one. I could open a sock shop with all the socks I have bought but can't wear. FOr me supportive walking shoes are key too. As for the meds and your husband being out of it I would tell this doc about that as well. Sometimes for me my docs have started me on too high of a dose. In time though he may adjust to this dose but it is a good idea to tell the doc. Sorry I could not be more help and hope your husband get some answers.

I think he took the cipro yikes! thanks for that information...