Recovering addict with severe sfn pain...
 

Hi Everyone,

I'm a recovering Vicodin addict (clean since Oct. 2008) and was recently diagnosed with small fiber neuropathy. My life has completely changed due to the pain in my feet and hands (not to mention chronic muscle spasms I believe are caused by the sfn). My biggest problem is my past addiction. I feel like none of my doctors take my pain seriously or believe that it's as bad as it is. Right now I'm on Lyrica (75mgs twice a day) and although it helps, it doesn't take the pain away totally (not to mention it makes me incredibly loopy - worse than any painkiller did).

I want to try other medications, but am too afraid to ask because I don't want to look like I'm just looking for drugs. My shrink told me to ask my pain doc what she would do for someone who wasn't a recovering addict and tell her you want the same treatment. He says I deserve it, addict or not. Although I believe him I'm just not comfortable advocating for myself in that way.

Anyone else here have any experience, thoughts, opinions on the matter? Thanks in advance!

Jen

Hi Jen,

Sorry you find yourself here, but congrats on beating your addiction. I know it's a tough one. I have a friend who has just gone through the same thing.

I don't have as severe a case as some people do, but you can check my signature for some of the things I take or use to help with either 1) the pain itself 2) trying to prevent it from progressing or maybe helping my nerves heal.

I'm not as a bad as I was last year, so something is helping.

Janie

If you have documented SFN (positive skin biopsy), then there should be no problem in taking your pain seriously and I think any doctor would do so. However, with your addiction history they absolutely have to approach your treatment plan differently. There are MANY medications out there to try BEFORE you even consider narcotics (and you really shouldn't be considering narcotics). Lyrica is known to make people loopy...I called it the zombie drug, when I took it.

You should contact a pain mgmt doctor that specializes in neuropathic pain. They will likely try neurontin, cymbalta (or a combo of the two) and if they don't work, then try other ones, like nortriptyline....or one of the many others on the list. They won't even consider narcotics until EVERY other avenue has been tried...and then they still may not be comfortable prescribing them. You just have to sit down and talk with a pain mgmt doc and take this one step at a time until you find the right combination of non-narcotics meds that work best for you.

Thanks so much for your input. And yup, my skin biopsy is positive. I didn't get the results back until January of this year but my symptoms have been going on for about 4 years (strange pain in my feet and feeling like I climbed Mount Washington after very little activity). I was able to just put it off and out of my mind until May of last year. First my upper back and neck seized up. It felt as though I was wearing something on my skin from my mid chest up to just under my earlobes. I new something wasn't right, but because it wasn't that painful I put it off.

Then I started having stomach issues along with a constant horrid taste in my mouth. After about of month of that my husband and I decided to spend a night in NYC. After having dinner we rented some of those citibikes and rode around Greenwich village. It wasn't strenuous because it was all down hill, but it was bumpy and after about 5 minutes I started having electrical pain shooting from my hands up my arms. Being the idiot hero that I can be, I didn't say anything and continued on hoping we'd pass a place to park the bikes. After another 5 minutes I finally told my husband and we searched for the nearest one.

I got off that bike with only one thing in mind, "What the hell is wrong with me?". Then the pain in my feet started to intensify and then I started feeling pain everywhere. Finally, my shrink of 8 years told me to go see this awesome doc in NYC (because my doc in NJ just kept scratching her head and telling me to exercise and every time I did I'd be bedridden for days). I saw Dr. N last October and he figured it was sfn but couldn't be sure until the skin biopsy.

Since the results came back I've tried Neurontin, Cymbalta and Lyrica. The Neurontin did nothing, the Cymbalta took away my ability to orgasm (and at 49 I don't need any help in that dept, lol) and though the Lyrica kind of works, I'm loopy and can't do anything when I'm taking it.

My pain is progressing every day. I can barely walk now and I can't use crutches because of the pain in my fingers and hands. It is only a matter of time that I finally deal and get a wheelchair, but I'm just not there yet, kwim? And after years of this my mind is finally going to those drugs I don't want to touch because I'm desperate for relief. I even tried sleeping with a bar of soap above my sheets but below my blanket because someone said it would take my pain away. It didn't. :p

I guess I should have included all these details in my first post but yesterday it was very difficult for me to type, not to mention think because of the Lyrica. I'm seeing my pain doc next Thursday and I'm bringing my husband with me for support. Hopefully I'll leave that appointment with hope instead of feeling like I'm being scrutinized. Let me say, I completely and totally understand why any doc would scrutinize me, especially a pain doc, but like I said before, I'm getting desperate for some relief. I'd really like to have a day where I wake up and just get out of bed and go about my day, kwim?

Thanks again for your response and support. :)

Here's what I take on a daily basis:

137 mcgs Synthroid
75mgs of Lyrica twice a day
30 mgs Cymbalta (slowly weaning off because it didn't help)
.25 mgs of Clonipin
Lidocaine patches, cream and Ketamine cream as needed

Managable Pain
 

I feel that pain elimination will not happen. Your Drs will get you to a place where the pain will still be present but buffered to a managable level. Also I agree with EN-Bloc that you need to reach a manageable pain level without getting into the opiates.Gabapentin works for some people and not others. I thought it did not help me until I quit it. Then it felt like it had done some good. If I need to retrench, I would try it again. I know it sounds cheezy but try to get exercise and adequate sleep and direct your thoughts away from being pain free. Good Luck, Ken in Texas.

You are 100% correct, but a girl can dream, can't she? :winky: And I know what you mean about not thinking it's working and then learning it does - I stopped taking the Lyrica for a few days thinking it wasn't helping and paid the price over the past three days (not doing that again).

:)

Ah, yes, it does help to know a bit more. I'm curious how much Neurontin you tried. Most people with your level of pain don't notice anything at the lower doses (100-300 mg TID) and it only begins to help when getting above this level...all the way up to 900+mg TID. And to combine it with the Cymbalta. I personally could not tolerate Cymbalta but did take Neurontin for 5 years or so until I maxed out on allowable dosage. But it did buy me 5 + years of pain mgmt (NOT pain free).

Have they done testing for the root cause of your SFN? After all, the best treatment is to address the root of the problem. Have you been check for diabetes (even pre-diabetes) or were you taking an antibiotic at the time this started (or before)? There are so many causes, including autoimmune disorders. It certainly won't always change the course of treatment just because you find that cause...but sometimes it can make all the difference and you can avoid big guns treatments or opiates.

Just some ideas to consider. You are doing the right thing by seeing a pain mgmt doctor. Hopefully they will help.

Hi, I don't deal with your issues, but have my own. I post a lot in the vit/supps section here and I have a thread going on MSM for pain calming effect. I also take Pain RX herbal supp for in between Ibuprofen.

I take a lot of supps for my issues...avoid drugs as much as I can.

Glad you got off the "V" cycle, my close relative went thru "H" with that one. Too many drugs and interactions and she is deaf from sudden hearing loss.

Hi Jen,
I use 20 mg of amitriptyline at 6pm nightly for my SFN. This has been a big relief for helping control pain and getting sleep. I began at 25mg but found I was very groggy in the morning. I also apply Morton Empsom lotion on the tops of my feet/toes and inner ankles before bed. Thank you Mrs. D! Hope this helps

I have hand issues as well and find hiking poles work better than a cane- you can use two outside, switch between sharp tips and crutch tips, the loops mean you don't have to grip them all the time and the cork handles are easier to hold, also they are much lighter than canes and extremely adjustable.
Mine are made by Leki.
Wheelchairs are not an all or nothing thing either- I use mine for airports, theme parks, stadiums, and museums, anywhere standing would be necessary or distances have to be covered quickly. They can save your energy for more important or enjoyable activities.