NeuroTalk Support Groups - Updating my SFN...it's been awhile :)

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Updating my SFN...it's been awhile :)

Gosh I don't even know where to start.

Let me see:

Was taken off 1800 mg gabapentin and put directly on Lyrica 75 mg for 3 weeks. During week 2 I started having terrible stomach aches....like the ones you have when you are a kid. Dr Greer said he has never heard of that symptom but took me off of it for 3 weeks to see if it was the Lyrica and it was. So for 6 weeks I was off gabapentin and only on 60 mg of Cymbalta at night.

My pain levels went through the roof ! So at least I knew the gabapentin was helping the pain some. When I went back Dr Greer titrated me up to my normal gabapentin of 1800 mg in 3 weeks. I got to the 1800 a week ago and am still experiencing debilitating pain. Yesterday was the first day I actually felt better in my head even though the pain level is still the same. I can deal with the pain a lot better when my head is on straight and not zoned out.

I know it was stupid and I did pay a price for it but I was given decadron for fatigue while having chemo. Only used it once or twice and it was awesome. So when we went to St George Island, FL during the week of Memorial Day I used one of the pills.....I was on cloud 9 for 2 whole days ! There were 14 of us in one huge house and we had a really good time. It's a 6 hour drive for us and riding or driving is something that really sets the SFN off. I sat in the back seat with pillows and blankets and put my feet in my grandson's lap. The trip wasn't too bad down or coming back thank goodness. I floated in the pool for hours and sang at the top of my lungs......tickled the grandkids.....and of course they joined in too ! Just wanted to share that with y'all :)

My last appoint with Dr Greer was last Friday. He said he has used the top 3 drugs for my SFN, gabapentin, Lyrica and Cymbalta and he feels like it's time for me to see a pain mgmt. specialist.

So......I made another appointment with Emory in Atl for Sept 9th. Some of you may remember I had an appointment in March but I cancelled it. I can't see the same dr they initially scheduled me for in March as she doesn't have an appoint for new patients until Dec of this year. They put me with another Dr that is listed to treat PN. I'm thinking I will need to see whatever dr at Emory that specializes in SFN but I'm going to see this lady first. And I have decided that if I don't feel she knows enough about SFN I will have the courage to ask for a referral to a dr that does at Emory. Nicely ask of course. I sensed that Dr Greer is thinking SCS but that thought really scares me.

I've read through the SCS forum but really can't remember if I saw anyone that had one specifically for SFN. The pain in my hands, legs and arms has become much worse over the last couple of months. I had one day last week that my hand/fingers hurt worse than my feet and that is something I'll tell you ! It hurt just to try and pick up a glass with nothing in it.

I've had a dear friend (you know who you are sweet lady) suggest that I try a TENS unit first to see if I get any relief. Any thoughts on trying that ? If it helps does that mean that possibly the SCS might help ?

As I've stated many times before on here......I have 3 goals.
1. To be able to clean my house
2. To be able to grocery shop once a week
3. To be able to cook dinner every night/or at least 5 times a week

So far I've reached none of these goals. It gets pretty depressing at times.

My family has suggested that I talk to a mental health professional that has experience in talking to people with chronic pain. I've been going to call for an appointment for weeks now but still haven't.

So that's is where I'm at today. Still hanging in there and still fighting every step of the way.

Thanks to everyone who takes the time to read my update.

Debi from Georgia

Thank you for the update. I hope you get better and better. Take care.

Hi Debi,
If you haven't heard of The Rebuilder, it's a TENS unit for the nerves that seems to provide some benefit. Two problems: they are expensive (about $800) and I believe the company has been reprimanded by the FDA for making false claims as a cure for neuropathy which likely deters people from trying it. My experience however is that it does help. I just used mine last night.

Hi Debi,
Im sorry to hear that you haven't reached any of your goals.

My family also suggested about a year ago that I see a therapist that deals with chronic pain patients. Fortunately, I found I really good one. She actually ran chronic pain groups for years. She does mediation tapes for pain for me etc.

She also helps me when I feel like I've lost my entire life. All or nothing thinking. She is good at listening to me vent too. I tell her things about how I feel emotionally and physically that I don't want to tell my family and friends.

I'm sure by now you are realizing that I'm suggesting you give it a try. It really does help me.

I purchased a REBUILDER a few years ago. It did nothing for my PN. Had been posting at that time on a different site and mentioned if someone wanted to pay for the shipping, they could have the Rebuilder "free" of charge. I did get someone from Canada that did take advantage of my offer. I had asked him to let me know if and how it worked for him; but never heard from him again.

As we all know, many things work differently for all of us; this just took up space for me.

Gerry

Debi,

Hope the Pain Management doctor will be helpful to you. I had tried the Lyrica, Cymbalta each for short time. Experienced nasty side effects and did not seem to help. Finally went to a different Pain Management doctor referred by a spine/orthopaedic doctor. Have been with this PM doctor for about 5 years. Had tried different injections/procedures; but unfortunately daily narcotic pain medication with instructions of amounts and time lapse between doses, etc. has kept my 24/7 pain level tolerant.

I do have someone come in every two weeks to do floors, vacuuming, etc.; but am able to keep up with laundry and keeping the house in order. Also, while our meals are not as good as they once were, I do make meals that are less time consuming. Without the pain meds; don't think I would be able to manage. I do not drive; but am fortunate my husband picks up most of the groceries. I do go to the local store occasionally with him; but walking around in the bigger stores would be difficult.

Hopefully you will soon get some pain relief. Have not tried seeing a therapist dealing with chronic pain. But probably not a bad idea to be able to vent and not feel guilty complaining to family and friends.

Gerry

Dear Debi,

I am so glad you posted to see if anyone on NT has had an SCS implanted for Small Fiber Neuropathy as I think they would be best to let you know their experiences and if it was beneficial.

I hope someone with SFN and an implanted Spinal Cord Stimulator will come along and express their experiences. I will subscribe to this thread to keep informed of any responses.

Wishing you better days. Hoping people with your type of neuropathy will respond quickly and give you some insight on what treatments help and which ones do not, other than just oral medications.

I would also like to throw out a question of my own to the NT community concerning SCS implants. Do they work on the same principle and/or in the same manner as a TENS unit?

If not, what are the primary differences other than the SCS being implanted and the TENS unit being external?

Thanks to anyone responding to St. George.

Quote:

Originally Posted by Hopeless (Post 1076511)

I agree; would be good to have suggestions other than oral meds. I had tried just about everything; including some years ago, spinal fusion and laminectomy,as well as a failed trial Spinal Cord Stimulator. The oral meds were a last resort.

Gerry

Quote:

Originally Posted by St George 2013 (Post 1076230)

So Sorry to hear you have not reached any of your goal and that your pain has spread to your hands and fingers. You do need some relief that is for sure and probably your family has a good suggestion.

I have the 10s and did not really give it a fair chance. I am on Lyrica and take Xanax if need at night and waiting for my apt on July 2 for pain management for Cymbalta.

Hope you are feeling Better and get the help you need as you don't need live in constant pain.
:grouphug:

Quote:

Originally Posted by beatle (Post 1076248)

I also have the Rebuilder (in Canada, back in 2007 I paid $500). For what it's worth - after using it for about 6 months, the burning in my feet had completely disappeared. However, it was/is not able to stop the debilitating 'pressure' pain from walking.