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 08-09-2014, 12:17 PM #1
jshanahan02474 jshanahan02474 is offline
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Confused Hey, new to the group

I just wanted to say hello,

I am new to the group and have had RSD/CRPS Type I since 2003 but undiagnosed until 2006. (nightmare)
Also Fibromyalgia. I feel like my RSD had spread to my left knee after a fall with torn ACL and left arm, to breast, to scapula, armpit, left upper ribs.

But the fibro is everywhere and classic tiredness, migraines, IBS and endometriosis. It waxes and wanes.

Wish my skin and body looked as awful as it feels.

Lately 1 year my hair is falling out and not it is very noticeably thinning. Does anyone else have this issue?
Gluten is a huge trigger for my pain.

Anything anyone can do to help me see the light?

Tried it all, lately big push for nonnarcotic pain meds. Which is impossible for me. On Methadone now but HATE it due to the massive negative connotations that are associated with it. Fentanyl patch was working some too. Taking PRN dilaudid 12mg prn 4 X a day max. Nearly died on lyrica and Neurontin.
Tried it all, now savella.

41 and having massive panic attacks with the pain (especially when something rubs me the wrong way, literally.)
Very sweaty and anxious with pain and generally wear the basic couple things due to pain.
Gluten is not my friend and it really amps up the pain and my belly issues. Started rectal bleeding with motrin and larger doses of tylenlol. But HUGE push to stay away form narcotics. Feel desperate when it's so bad.
Tried accupunture, massage, chiro, relexology, every pill made and feel like I cant make head way. Only thing that helps is lidocaine patches and sleeves and teds. Gained 60 pounds, and would love some new advise.
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Old 08-09-2014, 05:02 PM #2
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Sorry to hear you are having a hard time, but welcome to the group!
Have you thought about a drug pump? That might be a smart thing to ask your Dr. about. Hope you are able to get the answers you are seeking!
Take care
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Old 08-09-2014, 05:48 PM #3
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Welcome jshanahan02474.
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Old 08-10-2014, 08:33 AM #4
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Old 08-18-2014, 09:37 PM #5
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Default Fibro and RSD

Hi! I also have fibro and RSD. I take low dose naltrexone for my fibro. It does help for some of the body achiness. I don't know about the hair issue though.
Out of curiosity which did you get first?
I got fibro first and my doctor thinks there is a link between the two.
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Old 08-18-2014, 10:26 PM #6
RSD ME RSD ME is offline
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Hi Jshan and welcome. I've had rsd for almost four years now and fibromyalgia for almost two years. I also have endometeriosis. I had it removed twice and it's back again. I also suffer from clinical depression and panic attacks. I am sorry you suffer from these things too. All I can say from my experience is to find a good team of drs who understand RSD so that they can help you to manage the pain and then find a good psychiatrist that can help you to manage your panic attacks. I hope you feel better soon.Take care my friend. Sincerely, Renee.
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