NeuroTalk Support Groups - Sooo over this!

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Sooo over this! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/219925-sooo.html)

NurseKris

05-08-2015 06:35 PM

If you can't get in with a PM have you tried physical medicine and rehabilitation? My doctor is wonderful and he is in the physical medicine and rehab with an additional certification in pain medicine. I know he is not the only one in his department that is dual certified. I also found that this department is much larger than PM. Just a suggestion. Good luck!

Always_Believe

05-08-2015 06:38 PM

Thanks Kris! I actually tried to find my sons physiatrist for recommendations in IL...haven't figured out if he's still there yet & I'm sure he would do whatever he could...we developed a special relationship over my sons last 7 years.
Not sure there is any listed with my insurance, but I will check for sure!!

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LIT LOVE

05-08-2015 06:55 PM

I would suggest Low Dose Naltrexone. Your ortho should have no problem prescribing it, and it has little to no side effects at the correct dosage.

Always_Believe

05-08-2015 07:05 PM

I have thought of that as well...again. I am having trouble getting my pain across to any of my doctors, although I am inclined to think if my ortho refers to my diagnosis as 'this RSD you speak of' & referred me to PM without hesitation or attempts to handle it himself, it won't get through to him either.
This is why I am so near the edge. No one is on my provider lists except those who will not listen or help.

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Always_Believe

05-08-2015 08:34 PM

I picked up some epsom salt lotion a little while ago with every intention of trying it at that precarious moment right before a full on flare. Since I am just really learning the difference between my normal pain & a flare, I really didn't know when that was...until recently. So tonight, I tried it. So far it seems to help reduce a flare.

Any suggestions on timing/proper application?

Also curious about the whole desensitization stuff I've been reading about.

Always_Believe

05-09-2015 07:51 AM

So, more research and I will NOT be doing the contrast bath thing.

In fact, I am printing out the page from RSD Hope explaining it for my therapists.

Now....on to the whole "it's your foot sweating that is causing the swelling/shoes becoming too tight" thing...

spiritscript

05-09-2015 10:10 AM

Sounds like where I live! This is terrible! :(

Quote:

Originally Posted by Always_Believe (Post 1140799)

Another bout of ring-around-the-rosie with providers today. Supposedly my PCP sent a referral for pain management...however, the person who received the referral changed it to physical therapy. Oh, and, they don't even see patients for pain management where my insurance company said to go. 2+ hour drive to the ACTUAL pain management clinic.
Called the 'mental health' group on my insurance (aka 'specialize in substance abuse' place) figuring all this frustration combined with the pain and no life, I should talk to someone...called 3 numbers...no answer at any of them.
Contacted a local pain management group to find out what their rates are so I can figure out which kidney to sell. I can't go on like this much longer.

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