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 06-26-2018, 05:19 PM #1
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Default Struggling (trying not to make it a pitty post)

Hi im Jenny i was diagnosed with CRPS in December of 2017 literally on my birthday but it was a relief to finally have a diagnosis. I was hurt at work in October of 2017 which from what ive been reading my diagnosis was very short time compared to others but then the struggles of lovely Workers Comp! They keep denying treatments even after four IME’s my attourney keeps saying its because my age as i am only 22 its a life long thing and they dont want to pay but i keep telling him the money i could careless about right now i want treatment! This thing is traveling and my doctor already told me ill be lucky if i get movement back in my hand and its my dominant hand. I just want to be able to work again! In July of 2016 i was diagnosed with cancer that spreaded to some of my lymphnodes so i had to have radiation right after that i got Rhumatoid Arthritis (i dont know if theres a link i personally think there is but im no doctor!) and now work comp is saying oh its my RA and all my doctors (pain management,Nurology and my Rhumatologist) said RA has no effect on the nerves one is inflammation of the joints and the other is overactive nerves from what i understand. Im sorry to vent here i just found this page and broke down crying hearing people who are out there going through the same struggle with workers comp and with the CRPS, to end this i just want to ask if anyone does work with only one hand and if so what do you do if i may ask. Thank you all
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Old 06-26-2018, 05:55 PM #2
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So sorry to hear all that you are going through. I see a lot of parallels with my story...also a work comp case and dealing with denial of treatment. In the end for me I have had to go through my regular insurance to get treatments and even that was no easy task because most traditional treatments didn't work or didn't help enough to improve function...and right now the insurance companies don't want to approve the one treatment that IS helping. Glad to hear you have an attorney...have them keep at it for you and you focus on you. I did return to work for over 3 years with CRPS in both hands...but after falling off a ladder in 2015 that was the end of that. There are jobs out there where you don't have to use your hands much, and accommodations you can ask employers for to help you like hands free phone devices, programs that do speaking to text translations, etc. But that's all things you can look into once you get the treatments you need because you may regain more function than you think. This early there IS a good chance for relief or even remission with treatment...so don't give up.

In the mean time...a few things to keep in mind. Ice is generally not recommended...I know it makes my pain worse. Heat helps. Lidocaine patches help me and you can get lidocaine cream and patches over the counter (not quite as strong as an rx but close). And most important...move as much as possible. I know it hurts but immobilization will make things much worse...it really is a move it or lose it condition. Sometimes I have to have my husband forcibly move my fingers for me and omg is that awful...but it's better for me in the long run and it does lead to a lowering in pain. Warm baths with Epsom salts are the best for me.

Thinking of you and hoping you get the treatments you need soon.
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Old 06-26-2018, 07:18 PM #3
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Thank you my doctor has warned me about ice after my physical therapist put it on me before i got the diagnosis it made it hurt even worse! I hope your right thought my pain management doc says for the spinal stimulator best results are before you reach a year after that the likely hood of it working goes down alot. Thank you so much and prayers for your fight
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Old 06-29-2018, 05:48 AM #4
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I had a work-related car accident (on the way to work) at age 23; it was a mess too. I got diagnosed almost 3 years into it, it took a long time.

And so there was nothing they could do.

You are lucky in the sense that you have quite an early diagnosis, but if the treatments lag, then it's useless as well. I really feel for you!

Vent here all you want! You have had quite the bad luck health-wise already.

Hang in there! Just wanted to give you a few words of comfort and encouragement!
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 06-30-2018, 11:47 AM #5
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Quote:
Originally Posted by GothamJenny View Post
Thank you my doctor has warned me about ice after my physical therapist put it on me before i got the diagnosis it made it hurt even worse! I hope your right thought my pain management doc says for the spinal stimulator best results are before you reach a year after that the likely hood of it working goes down alot. Thank you so much and prayers for your fight
A work around is to get the dollar store ice packs and use them around, but not on your limb to lower the surrounding temp.

Ask about bone infusions. This is the cure used in Italy for cases in the first year. I am going to get them in August, for my severe bone loss in my spine, wrists and hips. Some on FB say they have helped their older cases, too.

Look up low dose naltrexone therapy. It did not cure me, but it probably has kept me on my feet.
Check out ketamine. Look into nerve blocks.

Mirror therapy can help. Warm water PT. Guided meditation. This did not help me, it just made me mad.
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