new member from NY with SFN
 

Hello
New to this board. I am suffering almost 7 years with foot and calf pain when standing or walking or any exertion to my legs. After visiting about 40 doctors and being wrongly diagnosed with muscle pressure and going thru an operation that did not help me at all. I was diagnosed in columbia university hospital with small fiber Neuropathy based on the skin biopsy test.
After any activity involving exertion to my legs, I get sever aching, twitching pain in my sole and calves of both legs and it leads to fatigue. The meds as you know have big side effect and provide little reliefsfn sy. The only way to avoid this pain is for me to cut down a lot on any activity and sitting down. I am fifty years old. Reading the boards I did not find so far someone with similar symptoms. I want to make sure this is SFN and talk to someone with similar symptoms or anyone that can provide any advise at all.

Thanks
Jacob

Hello Jacob,

Welcome to the NeuroTalk Support Groups!

Here is the link to the

Peripheral Neuropathy Forum

If you post there I'm sure the other members can offer information and support.

There is also the subforum that contains very useful tips and resources -

PN Tips, Resources, Supplements & Other Treatments SubForum

Hey there Jacob :)
 

Nice to meet u Jacob.

I also have SFN dx'd with skin punch biopsy in Sept 2013. I have the same symptoms as u plus some fun extras.

My pain dr says the deep aching is not related to SFN but I don't believe that. Many on here have that type of aching. I also could not walk far or stand for any length of time or my feet started burning, stinging, electrical zaps etc. I also have the twitching u speak about.

Through trial and error I am currently on gabapentin 1800 mg a day, BuTrans pain patch 20 mcg/hr and 3 oxycodone 10-325 a day. This has allowed me to walk a little farther and stand a little longer. I have to be careful to not overdo or I'll be in bed for 2 days trying to recover. I do lay down frequently during the day which helps.

I'm a lady, 53 years old and I live in Georgia.

Hope some of my info helps u.

Take care and keep us posted...we care :)

Debi from Georgia

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Thanks for arm reply does BuTrans pain patch 20 have any side effects? I am not good ith meds

Hi jake100

Welcome to the community :).

"does BuTrans pain patch 20 have any side effects?"

I don't have SFN but you might find this info about BuTrans and its possible side-effects helpful; http://www.drugs.com/pro/butrans-patch.html .

Hey Jake (also my next door neighbors name !)
 

BuTrans cannot be used by anyone that is not already on opioids......the box actually says "for use in opioid-experienced patients only".

That's why I said through 'trial and error' this is what I am using. This is only the 2nd pain medicine I have used.....started on hydrocodone and got up to 10-325 on that before I decided to see a pain specialist. He started me at 5mch/hr and every month I'd go up to the next level. 20 mcg/hr is as high as my pain dr will go. I had to switch from hydrocodone to oxycodone because hydro doesn't mix with BuTrans per my dr.

But to answer your question.......no I do not have any side effects from this pain patch. The only thing that happened was when I put the first patch on I was a little high for about 2 hours.....I put it on at night the first time so that was not a problem....haven't had that happen since.

I don't think u are on any pain meds right now are u ?

Most pain mgmt doctors will work with u on how u want your treatment to go. There are other things out there besides opioids that they can use.

It will take a while to find what works for u but I was in bed or on the couch 99% of the time when this started.......walking and standing are still a problem for me but not as much as in the beginning.

Does this info help u some ? I hope so.....please ask any questions u have.....others will chime in with their thoughts and experience too.

Take care.

Debi from Georgia

Thanks.One pain management doctor talk to me about nerve block for this, any ideas if anyone tried it with success please

HI Debi,
Thanks Can I talk to you please

Hello there Jake :)
 

I had 3 sympathic nerve blocks but they didn't help at all.....I would try it if I were u because some people experience weeks and sometimes months of relief. I really wished it had worked for me. Thank goodness my pain dr put me to sleep for the procedures or I probably would not have had them done......I'm a baby when it comes to people sticking things in my back.

My pain dr says now my only option other than changing to other opioids is to do a trial for the SCS (spinal cord stimulator). I'm just not ready to tackle that yet.

Take care.

Debi from Georgia

Hi Debi

Thanks for your reply and caring. **