Thread: PM dr
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Old 11-22-2012, 03:14 PM
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catra121 catra121 is offline
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catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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I would definitely do some research and go in with a list of questions/topics that you want to discuss with him, including a list of all your symptoms and when they started. Have a list of all your meds to and what (if any) side effects have you had from them. Do you feel like they are addressing your issues or are there things that you feel are not being well controlled?

As far as treatments go...that's a little tougher. Remember that this is your first appointment with him (as an RSD patient) so mostly it's going to be about assessing your needs and where you are at right now and begin the treatment process. Common first steps would be the sympathetic nerve blocks, physical therapy, and getting you on the common RSD meds.

One thing I would caution you on is going in there and telling the doctor exactly what treatments you do and do not want to try. I'm not saying don't stick to your guns...THAT you need to do. But if the doc recommends a nerve block and you don't want to do it, explain why you do not want to go down that road of treatment (concerns about spread, bad reactions, etc). I like to go in to my doctor with a list of treatments, meds, etc that I would like to try possibly and discuss all the options with her. At the end of the discussion we usually have a plan in place for what we are going to try NOW and what we will look at next. Always one thing at a time.

Also important is to narrow down what you want to focus on. For me, there were a handful of symptoms that I wanted to address first and I wanted to focus on getting the FUNCTION back. So those are what we looked at first. I didn't want to rely on meds for pain control, I didn't want an SCS, and I didn't want any more blocks (which caused my spread). I wanted to get out of the wheelchair I was in, I wanted to be able to drive again, and I wanted to get back to work. So we focused on what needed to happen to achieve these goals...one step at a time.

Big deal for me was at home physical therapy. I couldn't stand, walk, or drive so outpatient physical therapy was out but she ordered at home therapy and it was SO key to my recovery. Took many months, taking it slow and one step at a time, but I got there. The physical therapist was able to get me a portable TENS unit that I can wear all the time and it was a tremendous help with the pain in my ankle and allowed me to really DO the therapy. Also big for me were hot baths with Epsom salts, Lidoderm patches, and heating patches. I also adjusted my diet to the 4 Fs diet and this seemed to help with the inflammation.

We tried various meds but now I only have the Lidoderm patches and Clonidine patches (which control a lot of my crazy symptoms). I still have very high pain levels but have learned to live with them (most of the time anyway). This is my choice because I just don't want to have to rely on meds to function and like everything else when it comes to medical treatment, it's up to everyone to decide for themselves what is right for them. I also still use the TENS unit, still do physical therapy exercises every day, still do the hot baths with Epsom salts, have an ultrasound heat therapy unit I use, and also do tDCS treatments. These are what work for me.

You won't get all the answers in your first visit with the doctor...but it's a great time to start discussing what your goals are and what you are looking for from the doctor to help you achieve those goals. He will probably suggest treatments you are not interested in...just remember to be respectful and explain why those are not good options for YOU. It might also help if there is anyone you can bring with you into the appointment.

Don't let the doctor leave until you have discussed everything you want to and you have a treatment PLAN. It may be as simple to begin with as starting a new med or physical therapy...but make sure you know WHY you are doing whatever it is you are doing and that it is meant to help you achieve the goals you are setting for yourself with treatment. This way you know what results you are looking for. Keep a journal too so you can keep track of any changes (good or bad) as you go through treatment.

That said...if the doctor is not responsive or not interested in any of this then you need to find another one. Look for red flags (telling you to ice or immobilize, telling you RSD doesn't spread, etc). If you see/hear them...get out. Doctors who don't know what they are doing can cause you a lot of harm.

Take care and I hope things go well.
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