Introduction
 

Hi folks:

I just discovered this forum. Looks way more active than another one I joined.

Have had PN for well over 5 years. It came on slowly, so I didn't get concerned until 3 or 4 years ago. I diagnosed myself (lots of good medical sites out there), but my doctor (Kaiser) wanted to go through the usual diabetes, etc.

Finally got the correct diagnosis and then started down the path of what meds to use.

Gabapentin for about 16 months or so. Neurologist switched me to nortriptyline and had horrible side effects (anyone experienced panic attacks??). Took myself off of it (and switched neurologists because first one was non-responsive) and got a scrip for Lyrica. Just about 4 weeks into it and close to target dose (6/day); too soon to tell if it will be helpful.

I use medical marijuana -- indica strain is pretty good (and there was a University in Toronto that published marijuana/neuropathy test results showing 30% reporting improvement). I get my best results from vaporizing.

Took a very good pain management class (8 weeks/2 hours a week) from Kaiser. Find that soaking in warm water is helpful (with epsom salts -- something about the manganese).

Exercise in the afternoon/evening is not easy -- but I discovered aqua-aerobics (actually my wife discovered it) and can always count on my pain dropping at least 2 for a few hours afterwards.

So that's me. I look forward to learning from you.

rscowboy

Hi, glad you are here and welcome to the site. Sometimes this place is active and sometimes it is slow. But just want to welcome you here.

Trish :grouphug:

Can you tell us--
 

--what testing you went through, and if a specific cause for the neuropathy was found?

Welcome to our PN board!

There is alot of information scattered around here. Happy reading!

Howdy Cowboy (I've always wanted to say that.) and welcome to NT!

I'm sure you're going to love it here. I'd bet my last dollar (that being the one in my left pocket) that this is the liveliest and friendliest forum of its kind on the internet.

The specific link for PN is:
http://neurotalk.psychcentral.com/fo...aysprune=&f=20

Cheers

Testing/idiopathic/pain narcotics
 

Testing. Hmmm. Blood tests -- a B12 deficiency was found, but nothing suggesting diabetes. Nerve conduction tests. Yes, differences were found, but nothing that pointed towards any one thing. Idiopathic is what I think they concluded. I've turned into quite a nutritionist -- well, at least much more healthy eating --- since I got married. Alcohol is less than 2 glasses of beer or wine a week. LOTS more exercise (walking as well as aqua aerobics).

One of the interesting things I've noted is the sensitivity to changes in the pain. If my pain is 3 or below, it never comes into my conscious thought. But if it goes 5 - 7 or 8 - 6, I know about it.

I didn't talk about my vicodin use. Depending on other variables, one or two nights a week; really dislike the side effects. I'll use it around 9 or 10 if my paid is 7 and climbing.

In my Kaiser pain management class read about the higher level pain meds -- percocet, methadone, etc. Maybe those aren't used with PN. Anyone here use those drugs?

Hi and welcome to NT. Lots of great information and wonderful people. If you need any help navigating, please don't hesitate to ask. I hope you find the answers you are looking for.

http://i267.photobucket.com/albums/i...groupboots.jpg

Opiates CAN be used for those with neuropathy pain--
 

--but they generally aren't the first things prescribed, as nerve pain is a different entity than nociceptive pain and they don't work for eveybody; anti-epileptics (such as gabapentin, pregabalin, and the like) and antidepressants are usually prescribed initially.

Does sound like you do have some potential causes in the work-up--you said you tested low in B12 (deficiency)? What were the numbers? (B12 deficiency can certainly cause neuropathic symptoms, and should prompt further testing for things like celiac/gluten sensitivity, iron and Vitamin D levels . . .)

Two things--one, make sure you get copies of ALL lab test results (including the nerve conduction studies); you not only want them for your records, but many doctors dismiss pertinent high or low results. Second, I don't know how complete a work-up you've had, but you can compare it to the Liza Jane spreadsheets, which were devised to be as exhaustive a list of possible tests for neuropathic symptoms as we could all come up with:

www.lizajane.org

Hello Cowboy,
I received more information here than from most doctors, have had this crap for over 5 years and have tried most of the pain meds. Have been on Methadone about 2 years and Lyrica for 4 years. To me less is best 10mg of Methadone and 100mg of Lyrica twice a day. Was on high dosage of Tramadol and Lyrica, fell a lot, cut off a finger working in my shop in '07 and developed breathing problems. I receive good care from VA, have to see a doctor every month for Methadone refill (IMO its the best just don't abuse it) Big side effect is constipation. Also take a good many supplements. I got PN shortly after taking Zocor for cholesterol (6 weeks). There are people here who can really give you good advice. Good Luck
Lanny

the lizajane site hasnt been working for a while.

Welcome to the board. I have had pn for about 15 years and have been through many medications. I use Subutex now and it has been a life-saver. Allows me to think abut something other than the constant pain. For me, opiates made the difference. Constipation is a problem but I use Miralax and it works well. Its a small price to pay to get relief from the pain.

Pot would not work for me. I used it on a recreational basis when I was in my teens and I never enjoyed the effects. It would accent my pain not diminish it. But I'm glad it helps you. Is it legal for you to use it? I live in California and if I needed pot I could get it without having to worry about getting arrested. You are taking the right approach to your fight against PN. Being your own advocate is the way to go. Let's hope one day they find a cure for PN so others will not have to go through what we are going through.