NeuroTalk Support Groups - My SFN is spreading....what the heck is going on ?

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My SFN is spreading....what the heck is going on ?

I feel absolutely horrible.........I've spend the majority of this weekend in bed....I can usually sit in the recliner but that even bothers me. My feet, aching legs, pelvic cramps, hands and wrists, upper part of right arm are all hurting. The ends of all my toes are so sensitive that anything that touches them sets off electrical shocks, I feel like a knife is being driven through the soles of both feet.......ankles are cramping.......it even hurts my hand to 'wipe' myself after I tee-tee !

Mentally I'm just wore out......not sure how much the viocdin is working since I still hurt after taking it......I 'moan' when I hurt bad and I just hate that !!

I have an appointment with Emory in Atl on March 25th....my Gyn suggested I call and see if they have a list they can add me to in case someone cancels their '1st' appointment and they can get me in before March.

The only thing the neuro is treating me with is gabapentin......I was on 2700 mg a day but it was making me crazy so on Dec 17th I went back to 1800 mg a day.

I see so many diff meds used on here I wonder if he could add something to the gaba I'm already taking ?

Oh well........thanks for listening as always.

Debi from Georgia

I am so sorry you are worsening.

There is a thing called paraneoplasia. This is where a cancer is causing the nerve problems...along with other things:

This link lists some chemo agents and the potential for causing another cancer:
cancerresearchuk.org/cancer-help/type/hodgkins-lymphoma/treatment/chemotherapy/chemotherapy-drugs-for-hodgkins-lymphoma-and-their-side-effects

http://www.mayoclinic.org/diseases-c...n/CON-20028459

Blood work is called a paraneoplastic panel.

Some of the chemo agents are also triggers for Charcot Marie Tooth patients. Some CMT patients luck out and can be latent with it, until a round of chemo sets it off. This is due to the drugs but not the same as paraneoplasia.

I'd try to get into the doctor sooner. See if you can get on a cancellation list.

Vincristine is a no no for people with CMT.

Do you take Cymbalta or one of the other antidepressants (SSRIs) which help with nerve pain?

I hope you get some help and relief.

Hugs, Elaine

Quote:

Originally Posted by St George 2013 (Post 1041739)

Hi Debi,
Sorry to hear about your pain. I know those days when Its like you just stuck a finger in an electric socket. Shocks and pain all day. I hope you feel better soon. It might be worth a visit to your GP to discuss pain management until you get to Emory. Many years ago I was also on Neurontin and they added a Tryciclic (sp) antidepressant called Dothep to my meds. It did help me a lot. Then I had the narcos for breakthrough pain.

All the best,
Aussie:)

Excellent Visit to Neuro today !

I have been feeling so bad this week that I called my neuro's office yesterday and they got me in this morning. My daughter in law usually takes me but my husband took me this morning.......this dr is a man's dr ! He was so nice and considerate ! Kinda ticked me off.....lol

Anywho.....he's added 60 mg of Cymbalta to my 1800 mg of gaba a day. That's all I wanted....someone to do something for me ! He said he could increase that if needed.......so I'm feeling so much relief right now.......hoping it helps me stay out of bed.

My husband found out last week that Cymbalta now comes in generic ! Isn't that wonderful ? The neuro didn't even know it this morning....lol

Take care everyone and thanks so much for always being here for me. Hope we all have brighter days ahead.....this will not beat me !

Debi from Georgia

Quote:

Originally Posted by St George 2013 (Post 1042619)

So glad to hear that you are feeling more hopeful. Cymbalta helps a lot of people. You are certainly not the first person to notice that their doctor is much more attentive if their husband is present! It is always a good idea to have them along.

I'm sorry you are feeling so bad. As for another drug, I might suggest Tramadol, as it helps me and I don't feel any side effects that I am aware of except possibly difficult urination. I am taking gabapentin 2000 mg/day and Tramadol 200 mg/day. Also alpha-lipoic acid & evening primrose oil help me.

I imagine you are feeling a lot of stress over this. You might try some simple breathing exercises or meditation. I know this won't make your pain go away, but it may help. Try to keep moving and doing something. Don't ruminate on your pain.
Good luck,
Ron