RSD

[tresa47]

Hi...I am 49 years old woman with rsd in both hands. Just wanted an opinion on the med's i'm on.  3200mg gabapentin...40mg nortriptylin..( these were both just raised) 60mg cymbalta 15 mg roxicodone..4xdaily as needed...75mg avinza once daily...is this alot of medication?  My pain isn't under control at this point. About a month and a half ago my pain mgmt nurse pract had given my lorcet...that along with the 60mg. avinza , gabapentin, roxicodone cymbalta worked pretty well...i was told no..not on a regular basis...not 2 short term medications...Now i am taking an additional med..the nortipptylin..and they've increased the avinza and gabapentin...what''s going on..I don't understand. Recently my pain mgmt dr handed off alot of established patients to the pain npractioner..so he could do more procedures  ( this is what I was told)..so now I only see her...I am very unhappy...please help!

[tresa47]

I am glad they are trying new medications. too.but.it get's so hard waiting for something to help..and then it doesn't help. Gabapentin helps ...avinza... Nothing is giving me enough relief so I can get through each day without the burning and pain. The burning has been getting worse. it's so crazy  . Has anyone heard the tern..Intractable pain...? I have intractable pain caused by the rsd...No one told me this..it's written on the scripts my pain dr gives me. I have found out that doing too much when you have this can make this kind of pain worse...We need more good information. I live in a small town area so the choices are limited as for dr. I do like mine..and am actually seeing the dr this next month. The nurse-pract is away ... I am making a list of ? Any suggestions would be appreciated. Sorry this has gotten long...My thoughts tend to be kind of scattered at times...Thanks for listening..take care all....tresa

[mellie4]

My NP has weekly meetings with the doctors weekly as well.  I'm thankful for that.  I know they have suggested things that we hadn't done before.  I like the team approach.

[tresa47]

Thank you very much for your help and support...i'm very glad I have come back to medhelp...i will post more later today...mornings are busy at my home..as i am sure everyones' mornings are...Take care   Thersa

[namnam46]

I'm sorry, I keep having problems with my computer and loosing part of my posts, especially if I have to delete anything. Wish I was a computer whiz BUT I'm not!!

I wanted to also say, is there ANY way that you can request that your NEXT visit be WITH your Dr. and NOT your NP. Before you do that tho you MIGHT be ABSOLUTELY sure that you can't find a way to learn to be happy with her as she still will be consulting with your Dr. whenever anything comes up. So even tho you don't see him each visit his input is still there as far as your treatment goes. I know that my Pain Clinic actually discuss EACH patients treatment together at weekly meetings to be sure that other Dr.'s might have ideas that might benefit each patient. I love that about my clinic.

As I said before, I wish you the VERY best and am going to be anxiously waiting for your update after your next appointment.....Sherry

PS Sorry about the mess up in the posts.  :)

[namnam46]

Hi tresa,

I didn't post on here sooner as I don't have any experience with RSD and i knew that mellie had already answered you. She DEFINITELY knows the answers when it comes to RSD.

I'm so sorry that you are having to suffer with this also. However, I did want to lend you me support also and let you know that everyone here is behind you.

We will all be looking forward to you updates. Good luck.....Sherry

[mellie4]

I hope you'll stay on here; I'm sure you have a lot to offer.  There's great support here on this forum.

[tresa47]

Thanks to everyone for your replies..I have been with my pain mgmt dr almost 2 years...he is in an office setting..i have never been to a pain clinic...He is the one who diagnosed my rsd...well confirmed it. A rheumatologist  who I went to finally knew what was wrong. I had heard so many " i don't know's" I was screaming after each appt...it took 9 dr's to finally get a diagnosis...anyway..thank you again for your replies   and take care..i will be out here....theresa

[mellie4]

I did comment, Sara, but I couldn't send her a message either!  I hope she checks in.  I'd like to talk with her more since we seem to have a lot of the same issues.

[Sarajmt]

Hi!  I tried to send a pm but your profile indicates you don't do that so, I just want to let you know that I did contact that other forum member with RSD.  I know she has some things going on for the next couple of days and I haven't heard from her.  But I did leave her a message about your post.

Good Luck and I'm glad you're back!!!
Sara

[mellie4]

I have terrible pain in my hands.  It started with arthritis in both thumb joints.  Long story short (maybe), I had joint replacement in the left and it failed.  In three years I've had 8 surgeries and along the way developed RSD, more than likely from so many surgeries.

I've been on the Neurontin but can't tolerate it.  It leaves me feeling really out of it.  I do take 120 mg (60 am and 60 pm) of Cymbalta.  I'm not sure how much it really helps.  I've had about 5 stellate ganglion blocks, some help the RSD, for a little while or for a certain area but never have I had total relief.  I just started 75 mcg Fentanyl patch and switched over to 15 mg. morphine, 1-2, 4 times a day as needed.  I'm using a compounding cream that does help a little bit, and some lidoderm patches that help a tiny bit.  I've never been on nortriptyline (and forget at the moment what that does.)  I'm not familiar with Lorcet or avinza at all.  I'll have to check into those.

How long have you been with your pain clinic?  I actually love my NP.  I only see the doctor for procedures or when he consults with the NP at her request.

The hand pain can be tough.  You use your hands for everything.  In addition to the RSD, do you have loss of strength as well?  I get down with it especially lately.  

[tresa47]

thank you!  i haven't been on medhelp in quite a while...I believe I am back to stay. I need the help and support from the pain community!

[Sarajmt]

Hi Tresa:  I am so sorry to hear of your pain.  But I am not familiar with most of your meds.  I do take Cymbalta myself.  Bone spurs in my hands and fibro.

We do have a member here by the name of Mellie4 who has a simlar problem with her hands.  Hopefully she'll check in later.

If you are unhappy with your pain management, you could always request a second opinion from another PMP.  You would probably need to inform your present doctor, depending on how your contract reads.

I really hope that someone with more knowledge on this will be on later.  We  have some very medical savvy forum members.  So please keep checking back or feel free to post another question it you feel it's not being answered.  We all do our best here but not everyone is on all the time.  But I'm sure someone will be along to give you better advice than I.

Good luck!
Sara