Starting a study on Peripheral Neuropathy
 

Hi! I just joined the group and after reading several posts from new members, I find myself grateful for my own set of medical issues and aches and pains. So many people are in such pain! :(

On Tuesday, Nov. 23, I expect to be accepted into a medical study on the use of Lyrica for (Diabetic?) Peripheral Neuropathy. (PN?) Peripheral neuropathy runs in my family. My mother had it and two brothers also have it. We three are the ones who look like my mother and the ones who look like my father do not have it.

I've suffered for years and it's gotten worse for that last 5 years or so. Not long after my mother died in 2008, I was diagnosed with diabetes. I think the stress of losing her contributed to it but I still have it so I might be wrong. Neither of my brothers have diabetes but my mother had it for the last 5 years or so of her life.

My other health issues are Hypothyroidism and Hypertension. I had Graves Disease years ago (early 1980's) and eventually opted for the radioactive iodine treatment over surgery and have been under active for about 25 years, now. I understand that the hypertension is potentially caused from the thyroid condition.

Add a bad shoulder and lower back, probably arthritic or just a lazy SSI diagnosis, and you have my full medical scenario. So, even though I have a lot of issues, I don't think it's nearly as bad as others I've already read here. Nights are the worst for me...and shopping. Otherwise, I can manage pretty well. My husband just made a bar for the end of our bed to keep the blankets off my feet. :hug: He's become a fan of not having the weight, too, so it goes all the way across the bed. He plans to add a shelf modification for me this week. Prior to this, I was using those knee pillows at the foot of the bed to help keep the weight off but it didn't work well, they took a lot of room and they kept tipping and falling.

Before I close, I would like to ask if any of you have any advice for me about the Lyrica/peripheral neuropathy study. I've never done this sort of thing before. :Dunno: Thanks for listening. I hope I will eventually find a way to "give as good as I get". Until then, I'm looking forward to the learning and support that I anticipate receiving from all who have it to offer. :)

Great to have yo here!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

Here is a forum to check out:

http://neurotalk.psychcentral.com/forum20.html

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Welcome to NeuroTalk:

I will just say this... you need to come to our PN forum, and read up on the supplements used today to help with diabetic PN.

Lyrica is basically a more potent form of gabapentin, and does nothing for diabetic PN but lessen some symptoms of pain for some people.

The advantage of a study you describe is that you get that mega expensive Lyrica for free.

The downside is that you CANNOT DO anything else during the study to interfere with results. They probably have strict parameters in the forms you sign to enter the study.

Why this is bad is that wasted time you could be improving your nerve status (healing) will be lost to you.

Now diagnosis of PN is rather sketchy, for everyone. Your mention of family members with PN, makes me wonder if you have been tested for hereditary types of neuropathy. This follows the genes and is familial. There is no treatment known yet with supplements to help this form. But there are studies using a form of thiamine called befotiamine, an amino acid called acetyl carnitine, and an antioxidant alpha lipoic acid (or the newer form r-lipoic acid).

You don't have much time now before that study starts, so I don't know if you can take in this information or not usefully.

Lyrica does not work for everyone, and some find the side effects unbearable. But some members at our PN forum use it.
The most common negative side effects are peripheral edema and mental confusion (and depression).

Hello MrsRogers and WELCOME to Neurotalk!!

I see Darlene has given you the link to our Peripheral Neuropathy Forum :)

Please feel free to roam around the forums and join in anywhere!

Please don't hesitate to ask if you have any questions. Someone will always be around shortly to help in any way that we can.

I hope to see you around the boards.
:)
Abbie