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

St George 2013 · 06-17-2014, 08:01 AM

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

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