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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Old 03-27-2015, 09:45 AM #9
Always_Believe Always_Believe is offline
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Join Date: Jan 2015
Location: IL
Posts: 279
10 yr Member
Always_Believe Always_Believe is offline
Member
 
Join Date: Jan 2015
Location: IL
Posts: 279
10 yr Member
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Quote:
Originally Posted by Littlepaw View Post
From Always Believe "I've been without MD's/PT's/pain medication since September. I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain. And I feel like I can't ask any of my current doctors to do anything about it because the one I did (my PCP) informed me she doesn't prescribe narcotics - ok, great, no problem, how about some lidoderm patches? How about a PM referral? Her response is to try to keep increasing the gaba. Slowly. And maybe, someday, when the wind is blowing the right way she will refer me to PM. Until then, I'm in pain."



Reading this now I am sorry I skimmed past this post and responded to an earlier one. Aaack! I would've said something. My only is excuse is that yesterday I was focused on prep to go to Houston and getting my son squared away beforehand. Today was hopefully my last injection set to hydrodissect scar tissue in my ankle. So not fun....

It is no wonder you are grumpy, irritable, depressed. I am irritable for you and the delay in referral. Would your PCP maybe be more amenable to a referral for Physical Medicine and Rehabilitation? These guys are used to debilitation and pain. Some of them do a fair amount of pain management. I'm thinking maybe with the functional limitations and PT the PCP might go this route and it would at least be something.

I think more and more the pool would be so good for you. It might be worth a call to the Y to see if anyone in your area goes in on a regular basis. Also some of the churches have volunteers who drive people for appointments and such. There may be some kind soul willing to help out. I know an avid swimmer who lives 45 minutes from a community center with a pool who makes the drive routinely. She is a retired cop and wouldn't hesitate to give someone a ride when she goes.

Lastly, I know I said it before but I'm gonna say it again. Think about Mayo. It's in striking distance, they love changing people's lives and they do 100% write off depending on income level. They have pain, ortho, PM&R, the whole shebang. You could get that whole multidisciplinary thing going. I am sure they have a place people can stay that is underwritten by their foundation. Stanford does, Seton in Austin does, regardless of what hospital you go to in Austin. What have you got to lose? Call and talk to someone at their concierge office or bug a social worker. A hospital social worker will know how to get you set up. If they don't know they will find out. It's what we live for.

I am sending Healing Love and prayers for rest and restoration.
Littlepaw
I have a feeling my PCP is on her own personal mission at my expense. That, or she is taking it too slow for my advancement. I think she is forgetting how long ago this started and my physical need for pain relief/rehabilitation is growing and the door is closing. After more phone calls and emails, I have gotten my PCP to discuss my case with a neuro who is close enough but takes my insurance on a 'case by case' basis. I am keeping my appointment with my ortho for Monday in hopes to get some additional MD on board. My hope is that he will see beyond the bones. If he doesn't, perhaps he will see how the osteoporosis affects the arthritis pain and the correlation of that pain in my rehab.

As for Mayo...I have looked into a few things there. They do not take IL medicaid. Perhaps there is some study I can be a guinea pig for. I will keep looking.

Thank you again for your love, hugs, prayers and support.
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