[Rrae]

Hi everyone I'm new here....when I joined, I was floored at how many people and posts there are with peripheral neuropathy !
That in itself is quite a comfort - knowing how easy it will be to talk to you...

I won't go off on a long speal, but in a nutshell here's me : Small Fiber Neuropathy of 5 years, It's in both legs and it's getting harder and harder to walk, go upstairs,,etc... The pain is absolutely intolerable... tried ALLLL the standard meds to no avail... the only thing that has kept me from losing my mind are the stronger opioids, but I'm so tired of being on them and my tolerance just keeps going up. hormones are depleated, etc etc.... Desperately want my life back, so am going to do the SCS (spinal cord stimulator) in the hopes that i can back way off of these meds. HOWEVER, after being on the Fentanyl 100 mcg patches for over a year I know it will not be easy to quit. I've heard of how awful the withdrawals are and I've experienced it to a small degree when I've tried to taper down.....i quickly slapped another patch on cuz i realize how terrible it's gonna be and i don't think i can take that degree of torture!

I will be talking to my pain doc soon about this, but i wanted to get support and advice from the ones i trust the most - - the patients !
Would appreciate input from you, good OR bad. I must face the reality of what I'm dealing with...
I will go ahead and submit this post, and in the meantime I will look thru the stickys. I know there is a lot of wonderful advice and info on PN.
My other concern besides the withdrawal, is HOW to determine my pain level during my SCS trial implant because to be quite honest, I'm afraid I won't know where my original pain ends and the withdrawal pain begins !!

Please Help !
Rae

[ewizabeth]

Welcome to NeuroTalk Rae! I don't have PN or experience with that medicine but someone should see your post and offer some ideas.

I've had to wean myself off some meds and some are just not easy at all even when I taper off of them slowly. But I have successfully quit them, it just seems it takes awhile for my body to adjust.

Anyway, some of our PN board regulars should be along sooner or later and share some thoughts.

[Rrae]

I guess my main confusion is that the Dr who will be implanting the SCS told me to come to the procedure WITH my pain meds on board .....so how will i be able to tell him if he's got the leads placed right??
But when i was getting ready to leave from our consultation visit, he simply said, when you go home with the trial, just don't get confused about the pain of withdrawals vs. getting relief from the SCS. mwah??
Don't get me wrong, this guy is very renowned and confident and has a good reputation with these implants and alll.....but i'm just confused because I don't see how to get an accurate response when trying to decifer if the SCS is gonna work? I need to hear from SCS patients who have done this.....
I think i should have titled the thread differently ? My fear here is twofold... one is getting through the trial with a straight answer and the other is that I've been on strong pain meds for about 4 years and i know I'm gonna need to be under a Doctor's care to get off the meds, so as not to throw my body into complete mayhem....!! Really need direction here! Please chime in!
Rae

[mrsD]

You might ask at the RSD forum about SCS...
Some of them have had this implant:

This is an example thread:
http://neurotalk.psychcentral.com/sh...ht=spinal+cord

When you search, use a longer word than SCS...
I used spinal cord

[Rrae]

Thanks so much MrsD ! you are so helpful to so many people...i don't see how you do it - spreading yourself so thin! Just wanted to say a special thank you - i can see you are a special part of the backbone of this forum!!
Have a great Thanksgiving

[cyclelops]

I recently went off fentanyl 50mcg. It's been two months. I did it pretty quick, going from 50 to 25mcg to 12.5mcg and off in a matter of 10 days. It was pretty quick and I advise you to speak with your physician and also research what to expect so you don't panic when things happen.

Opiate withdrawal is not fun, however, the worst is benzodiazepine withdrawal which I undertook after the fentanyl withdrawal. I have been in some state of withdrawal now for 2 months. I am 28 days past the last klonopin and this has been agonizing physically. I am finally up and walking and eating, and much of the brutal stinging, burning and pain is fading. I get momentary glimpses of what it feels like to be normal. I am in less pain not more. I will warn any one going off benzo's to talk to your doc....I had to set up my own ICU in my home, my BP was extremely labile. I puked for several days, and could not eat. My body went into overdrive and I lost 15 pounds. I had to use supplements as I could not eat. I needed to use other meds, such as BP meds while I was in active withdrawal.

Likely I went down too fast, however, I was at tolerance with a 1.5 mg daily dose of klonopin and did not want to go up. Now I am in post withdrawal where my GABA receptors need to reform or be replaced, and gene transcription is going on, to reprogram and replace all the structurally changed receptors that klonopin caused. This can take years, but seems for me to be going fast with the exception of normal sleep. Some people are permanently altered. All that one can do at this point is hope and pray that one's body recovers on its own.

In the last year, I also quit Ambien.

I researched opiates and benzo's prior to going off, and found several interesting things. One is the Paradoxical Pain Syndrome, which can only be cured by going off opiates. I think I was having this, since my pain went down after I got thru the withdrawal off fentanyl. It is worth researching.

The other is benzo tolerance, and the only way to deal with this is increasing your dose or weaning off. I have never encountered anything as brutal as going off klonopin, and I was on a small dose!

In the next few months, I think I will get to baseline with my neuropathy. I know for sure, that I have autonomic neuropathy and polyneuropathy as my tests were done before I went on pain pills or benzo's. My neuro did not like my being on opiates or benzo's. I just wanted to live my life actively and felt the meds would help me with that....(not).

I do have a maxed out ANA, low C4 and receive IVIG, which, without it, I do not think I could have gotten off my meds. My pain has gone down since IVIG was reinstituted.

Anyway, perhaps you should allow yourself to stabilize off the fentanyl before getting the implant. Keep telling yourself that you will be OK as you go thru withdrawal. You can do it. Opiate withdrawal is fairly short in duration. Bennzo withdrawal and post-benzo syndrome lasts years. I would never have thought that such a difficult drug to get off of, would be given out so easily.

Oh, I am still dealing with RLS, and take a small dose of Mirapex, and that is all I take.....now if I don't start compulsively gambling or carousing around, I will be fine, LOL.

I wish I didn't have to mess with my neurotransmitters at all....but sometimes, you gotta do what you gotta do.

[Rrae]

Thank you for sharing your ordeal....sorry to hear it's been such a rough go.
You've got my support!
One of the things that stuck out the most in your post was the "Paradoxal Pain Syndrome" wow ! I betchya anything that's exactly what i'm dealing with! It's such a cycle of madness man!! It gets to a point where i don't know for sure which is my original neuropathy and which is the 'rebound' pain that the meds do...
So, that's precisely why i'm gonna try my best to get off the pain meds....
But Lord have mercy the minute i can tell withdrawal starts setting in and that awful feeling of dread/anxiety/depression/guilt.....just totally consumes me and i can't do it! And THAT's just the MENTAL part! I can tell that the physical part will totally do me in......i admit to being a wimp
I was thinkin that the Xanax will help me get over the hardcore Fentanyl, but reading your post makes me re-think...... yikes!
Keep in touch and keep me updated on your success and thanks again for your time and empathy!
Rae

[cyclelops]

For any one debating going off meds.....save the pain meds for last and get rid of the benzos first....I did it the other way around, and if I had it to do over, I would have DC'd the benzo first.

Anyway, I am slowly feeling better. I will hit a wall at some point, as the disease will still be there and then I will have a good idea of my 'base'.

[diagnonsense]

I'd almost suggest checking into a rehab facility/psych floor to safely taper off the medication.

I'm sure then you can also get some sort of medication to ease you off it/help with withdrawls.

*I watch too much tv*

[mrsD]

Some people detox off fentanyl patches using Subutex or Suboxone (has Naloxone in it).

This sublingual narcotic requires special doctor certification to prescribe, but can be used to detox off other narcotic treatments.

More here:
http://www.suboxone.com/?qs=ga&s_kwc...FQsMDQodEFp6pA

I had a patient on high dose fentanyl (due to a car accident and neck injury) who used Suboxone very successfully. He was able to return to work and was very happy with his new life.