Does your gp or internist help you in any way with the RSD or do you just see this doctor for your physical? I ask cause I have seen 3 internists since I got dx with RSD and PN. I was hoping to find a good one who would help manage my case or if I needed something. So far though I have been unhappy with my care and these are internists who I felt would have more training. So basically I just go for the yearly physical and that is it. I am in different state now so am due for a physical but not really in the mood for another new doc so am not sure if I will wait and when I go to my homestate go to my one there who is not good or try another new one. Thanks

I asked my family Doc if he could help with RSD and he said no. Basically the Pain Mgt. Drs. have a racquette on this and Family Dr. are not allowed to prescribe the meds that we need on a permanent basis. I was a bit dissapointed as well. Oh well have to play the game-Carol

My PCP does my PM but he is also a Sports Medicine Dr. He takes care of the High School football team here so he is pretty good with pain. He took over my PM and my councelling years ago when I couldn't find a decent Dr. for either one.

He gives me any med to try. I have tried them all from Morophine to what I have now, Methadone.

I think it's important to have a PCP so he can send you out to other Drs. that you need and what I found is that if they know you have a PCP that keeps up with your care the other Drs. seem to know that you are not just Dr. shopping on your own. I have all of the other Drs. I see send a report back to my PCP so they know I am being open with them. Having to have narcotics make a lot of the Drs. hesitant of handing them out to new patients especially.

I don't think it matters so much what kind of Dr. you see if he is willing to do what you need him to do to get you better.

Ada

Hi Daniella,

My GP doesn't manage my RSD like the others mentioned either. I only see him when I have any other issues on top of my RSD. My PM Doctor sends of my medication scrips to him so that our local pharmacy can deal with them and he also sends letters to make him aware of any medical intervention/procedures I have had.

I'd recommend seeing a PM (Pain Management) Doctor if you don't already. They seem to know most about RSD from what i've experienced.

Hope you're doing well!
Alison.

Hi Daniella,

My GP has known me and my husband for over 15 years. He and his staff write a lot of my scripts, including my pain meds. They know us and trust my family not to abuse the drugs. Right now I am trying to cut back on some of my meds and they are helping me with that, but when I was really sick and needed to increase them last summer they were there for me, too. He plays a HUGE role in my healthcare - keeping an eye on my bloodwork, my blood pressure, my cholesterol, etc. If you are taking meds for your RSD you need to make sure that you have regular check-ups because some of the stuff that we are prescribed can have some awful side effects (i.e - Topamax & Neurontin). He and his staff also order tests for me when I want them - like MRI's for my cervical spine or brain when I was having really bad head pain. I believe that my GP's files contain copies of my PM docs reports and all of the other docs I have seen since I got sick (there have been quite a few).

My PM doc is up in Boston, about 60 miles away from here. Because he is in another state, he can't write scripts for pain meds for me. He performed blocks last year and is doing lidocaine infusions for me this year. He doesn't have ketamine, but has talked about trying to get it next year.

There is no one in RI that I would trust to take care of my RSD. (When I was initially diagnosed, before I knew much about RSD, the first RI doc that took care of me chose to perform trigger point injections over that first 6 month period, deeming nerve blocks "too risky," thereby probably costing me that all important window of opportunity for remission. I'll never know...) The trigger points also caused the RSD to spread.

Both of my docs are exceptionally busy (because they are both well-loved). It takes a long time to get in to see either one. That's a definite disadvantage to seeing great practictioners. If you can find one doc to help coordinate your care that you like and trust, it would make things easier for you. Maybe your friends can give you a reference.

Good luck and take care, XOXO Sandy

Hi thank you for your thoughts. I have seen a couple pain management docs and had procedure plus meds. I am not on any narcotics nor do I want to be so it is not about doctor shopping for meds but about a doc looking outside of the box. My last/current pain doc is the best with that because he looks at both the PN and RSD but does not push into big procedures.I have other issues going on and some is not known if it is part of RSD/PN or seperate. I am not even sure anymore what I am looking for in a GP cause am not looking for meds. Maybe to make more connections cause though I have seen a reumatologist etc a lot I feel is going on auto immune wise in my body. Well thanks again

Daniella - have you thought about booking an appt with Dr. S? It takes 18 mths or so to see him, but you can call and try to get in sooner when people cancel. He's supposed to be the very best for RSD. Or one of the other RSD docs that might be located closer to you? I was amazed at how smart Dr. Getson (of Marlton, NJ) was compared to the other pain management docs that I have seen - he's that way because he does RSD most of the time, and he's been doing it for over 13 years, and they only do it once in a while. Experience counts for a lot. My doc in Boston is great - but Getson was way better. Just my two cents....I don't know how sick you are and whether you can travel, etc...

Thanks yes I have thought about it. Also about going to Tampa for Dr K and ketamine or Mayo because of my eyes,head and legs combo that I may have another condition with PN and RSD too. I have seen Dr Stanton Hicks and Dr Carden both are known rsd docs and took part in the Cleveland pain program for short time till my pain got too high. Anyhow my experience was not the best. I am so tired of traveling for docs to be let down.
Up till about 2 months I was making slow progress but then something happened and I went backwards to worse and going back
I feel so let down by doctors in general and have seen so many on top of these few like many I know understand.
Thanks trying to figure something out and push myself to do something. I am on my own right now through this so I appreciate everyones support.

My GP is trying to keep me alive. Just knowing he's there and willing to help is half of what I need. He listens and responds. Good doctors are a big part of dealing with this but the biggest is learning your triggers.