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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Unread 11-21-2012, 09:57 PM   #1
tos8
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In Decemeber im going to go see a PM dr i saw 4yrs ago. However 4yrs ago I wasnt dxed with RSD, it was for post rib resection surgery. So I need major help! I need to be ready when I go in, completly ready. So the issue i KNOW for fact im going to have is hes going to toss me in the "tos bucket", us TOS paitents call it the "tos bucket" because every sympthom, every problems gets blamed on the tos, And so there for there only willing the treat you as a tos paitent. I will NOT go in there and be treated as a tos paitent, i will go in there and be treated as an RSD paitent. So heres where I need help. I refuse ALL injections! NO injections at all, exspecially shooting botox in my scalenes, those drs were nuts!!! I will also not get a SCS! The PM drs have tried and tried again, but its not happening. So thats where i need help, I need to know besides those things, what can i bring to the table to him. Im ok with doing infusions, But i dont know what kind are available. And im ok with meds, which im already on. I would like to try IVIG but I know its a long shot for right now. So whats somthing i can present for the time being? I know for a fact this dr is not gonna be very knowlegable on RSD. But hes the only one i can see right now until i find better help. So im gonna have to bring everything to him.
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Unread 11-21-2012, 10:42 PM   #2
jpcrps
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tos8,

If I were you I would do my research and bring some informational material to leave with him. TOS has relationship to RSD/CRPS in that TOS can be instigator for same. I think I read something about this on Hooshmand's web site.

Also, if you have the records from prior doctors who have given RSD diagnosis these are crucial.

Why are you changing PMs - or have you had a PM for RSD? When/how were you diagnosed and what treatments have you had? All of this info will be helpful to your new PM not to throw you in the TOS "bucket".

I am aware of lidocaine and ketamine infusions for crps/rsd - protocols are readily available from web search - check rsd.org

Best of luck to you with new PM.
Love,
Jenny
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Unread 11-22-2012, 01:19 AM   #3
tos8
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Hi Jenny. My neuro dxed me, the RSD is very visable, so thats how he knew i had it. And yes the RSD was caused by TOS surgery. so theres nothing that can be done about it now on behalf of the tos. He will be able to see my records since its in the computer system of all my drs. I havent had a PM for RSD yet. I havent seen a PM for 4yrs which was him. Other then meds, ive had no treatments for it yet. Now im ready, so now im ready to go in and give him as much info as possible and see if we can get anywhere.



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Originally Posted by jpcrps View Post
tos8,

If I were you I would do my research and bring some informational material to leave with him. TOS has relationship to RSD/CRPS in that TOS can be instigator for same. I think I read something about this on Hooshmand's web site.

Also, if you have the records from prior doctors who have given RSD diagnosis these are crucial.

Why are you changing PMs - or have you had a PM for RSD? When/how were you diagnosed and what treatments have you had? All of this info will be helpful to your new PM not to throw you in the TOS "bucket".

I am aware of lidocaine and ketamine infusions for crps/rsd - protocols are readily available from web search - check rsd.org

Best of luck to you with new PM.
Love,
Jenny
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Unread 11-22-2012, 03:14 PM   #4
catra121
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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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Unread 11-22-2012, 03:20 PM   #5
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**

i wish you all the best - do not give up! there are new treatments and research happening. It is hard to stay positive, and sometimes we have to let the grief and worry wash over us, so it doesn't get buried and fester.

On Thanks giving day, I am making a promise to myself to take it easy - not to fret - and to enjoy any small (or big) moments of joy. i wish you MANY moments of joy and love. And that your PM is familiar with CRPS and/or can become familiar enough to provide you with good support, which is what you need.

Please continue your research - the best patient for this condition is the most informed patient. web sites I have found most helpful are: national institute for health (NIH), rsdhope.org, rsdfoundation.org, about rsd.com, wikipedia (yes, really), rsdrx.com.

Please keep us posted - I am available for PM at any time.

Aloha,
Jenny
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Unread 01-15-2013, 06:12 AM   #6
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Hi TOS8, I hope your appt with your old-PM doctor went well.

I hope you get put on long-acting pain meds so you don't run out of meds.

I was scared off of SCS when I first saw the CD/DVD about it and my parents/s.o. were so TOTALLY AGAINST it that I was really not interested in it too. But after two years of being on long-acting opiate medication and feeling dumbed down by all the nerve pain meds and opiates, and having my life get smaller and smaller and my activities restricted, I realized, I have to get a life and get my pain managed without so much medication!! So now I'm trying the SCS and really, it has been a pleasant surprise. It really works and it kinda feels nice, like a massage actually. It warms up my hands and arms.

It is all your decision. I'm just telling you when you are sick and tired of the meds and how they affect your life you may want to try the SCS for pain control. I'm very motivated.
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Unread 02-18-2013, 01:36 PM   #7
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I so screwed up and i dont know what to do! Alot has been going on and ive just been busy. I had cancled my appt in december because i cant even remember honestly, but then I got an appt for Feb. and I was so thankful my appt was coming up because the pain has just been awful, to the point that when my pain gets to a certain level it sets off my seizures and so im having seizures. And because I got busy I missed my appt that I had for Feb. I didnt relise it was the 1 day. I thought it was the next week. And now I have to wait another 3 months to see him. It was already such a long wait and now I have to wait longer. Ive been exhausted and busy and I cannot believe i missed my appt. I even got my fent patch upped to 50mcg a few days ago and i was very suprised to feel that it gave me just very little relief. So my pain is still bad and its not like i can get my meds increased again. I keep saying that I can do this. Ive done it for 6yrs now, so i can keep doing it. But when i cant go bowling with my best friend, and havent now for over 6yrs, that hurts. Im young and i cant even do any thing fun. Sure we can keep playing board games and monoply over and over, but sometimes its just not fair. Just another 3 months.
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Unread 02-19-2013, 02:08 PM   #8
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Quote:
Originally Posted by tos8 View Post
In Decemeber im going to go see a PM dr i saw 4yrs ago. However 4yrs ago I wasnt dxed with RSD, it was for post rib resection surgery. So I need major help! I need to be ready when I go in, completly ready. So the issue i KNOW for fact im going to have is hes going to toss me in the "tos bucket", us TOS paitents call it the "tos bucket" because every sympthom, every problems gets blamed on the tos, And so there for there only willing the treat you as a tos paitent. I will NOT go in there and be treated as a tos paitent, i will go in there and be treated as an RSD paitent. So heres where I need help. I refuse ALL injections! NO injections at all, exspecially shooting botox in my scalenes, those drs were nuts!!! I will also not get a SCS! The PM drs have tried and tried again, but its not happening. So thats where i need help, I need to know besides those things, what can i bring to the table to him. Im ok with doing infusions, But i dont know what kind are available. And im ok with meds, which im already on. I would like to try IVIG but I know its a long shot for right now. So whats somthing i can present for the time being? I know for a fact this dr is not gonna be very knowlegable on RSD. But hes the only one i can see right now until i find better help. So im gonna have to bring everything to him.
I have a question for you.... What is TOS?
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