What next?
 

I really would like to get off of Gabapentin. What next? Neurologist who comes to our small town hospitol does not really want to treat me, RSD is not his thing, even though he knows about it??? I have RSD in my right foot. Been a year now.

Foot doctor was the worst! I will not even share that with you. Although he is the one who thought it might be RSD??? He is the one who initally put me on Gabapentin 800 4Xday . All I want is some help. Something besides "It is not broken".

The family doctor is a nurse practicioner, she was very kind and sympathetic. Had no idea what to do. Take some Ibuprophen. She is probably my next stop.

Physical Therapist had never treated RSD, so did not go there. They did give me a walker to use. :) I am doing mirror therapy on my own. Something they had never heard of. big sigh

My question to you is what are some options, living in a small town, not able to go anywhere? I am on medicaid. Need a little education before my next neurologist visit next week. All of the weight gain,brain fog, etc, from the Gabapentin, is no longer acceptable to me. Yes it has helped me to get back on my feet, which was my goal, lessen the pain SO I could start the long, long trail to walking on my own. Got out of bed, then wheelchair, walker, cane, hobbling a little farther down street each day, then.......... good bye cane! :-) Hmmm I have come a long way.

My gait is not great, lol, standing very long is painful, still have to put my foot up. Have learned how to do everything in stages, and then rest. I think I can, I think I can.......yeah I did it!

Amitriptaline 50 mg has helped with mood and sleep, pain if better in morning. Ibuprophen 800 mg helps some, only taking it when needed.

Doctors can sure be not helpful. I can sure see the need to educate ourselves. Nope not going on Lyrica. I understand there is a lot out there, which can lead to confusion. Thank you for reading, I am so glad you are here.
:)
gratefully
zinnia

Hi Zinnia,

You have made a lot of progress! It seems pretty standard for it to come slowly so you are not alone in that. I used to feel that if something made me 5% better it was worthwhile, because many little things contribute to gains over time.

Finding good medical care can be a challenge. Even Austin does not have the specialists I needed for my nerve injury. I was faced with Houston (or Dallas) to get care. As it stands, I love my Houston docs and still make the 3 hour drive for follow-up when needed.

My point is that sometimes travel is necessary to get the level of care that will propel you forward. I know it is a hassle but it might be that you could consult in a larger area and have a doctor closer to you coordinate their treatment plan. I had the best luck and best care at large teaching institutions.

I certainly wouldn't settle for "it's not broken" either. So many other things can be a problem in the foot. I will go as far as to say that if you haven't had adequate workup in your rural area then travel may be imperative to ensure there is a not a pain contributor that can be treated. Obviously I don't know anything about your history, so forgive me if you are all checked out already. We do sometimes get members who haven't had much in the way of diagnostics or imaging so I kind of harp about this. Don't want anyone to suffer needlessly.

There are definitely treatment options besides gabapentin. When you have follow up you might want to ask about tapering down to see if you can tolerate life with less of it and to prep for trying another med. Amitriptyline has one of the highest side effect profiles for that drug class. You might have fewer side effects from nortriptyline or desipramine. Topicals can help pick up the slack. Low dose naltrexone is an option as in something like clonidine. Whoever ends up taking care of you will be really important as you try new things. Don't settle for less in a practitioner than you deserve.

In the meantime, I found swimming and buoyancy belt exercise in the pool invaluable. Especially when I was still having difficulty weightbearing. Mirror therapy was good also. If your clinic has a PT who is certified in Manual Therapy I also found that gentle manipulation of my foot as it adjusted to mechanical changes kept all those little bones in a happier place.

Sending hugs and healing Love, :hug:

Thank you Littlepaw for your encouraging words. I will read up on some of the things you have suggested. I appreciate your input.
gratefully
zinnia

Zinnia,
I have the same problem living in a rural area. Even traveling to Dallas I had a hard time finding a provider that would do anything other than Lumbar Sympathetic Blocks or an SCS trial. LSB's didn't work and not ready for SCS. I had to keep searching and often times in Dallas. I saw 6 docs before I found 1 that would try a protocol at least similar to what Pradeep Chopra recommends (what I wanted to try.) If you are looking for someone to layout options the Chopra video on You Tube is excellent. I took notes and after much persistence found a neurologist that is not great, but at least he works with me and listens. I found his name thriugh RSD.org They have a list of docs throughout the country. I wish you luck in finding someone. ~mama mac

Thank you mama mac for sharing your experience with me. I will look at that video again, and dig out the notes I took. It has been quite a while since I watched it. I really thought that the neurologist I am seeing was good, they so overbook his appointments, he has little time to give to each patient. I am grateful he comes to our hospitol, there is such a need.

gratefully
zinnia