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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)

Progression of CRPS??

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Old 06-24-2019, 07:06 AM   #1
annabanana123
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Default Progression of CRPS??

I've started having a lot of muscle spasms and cramping in my two most affected limbs, which are unfortunately my dominant side. Its like I can't straighten out my hand and/or foot when it happens even with a muscle relaxer (tizanidine, 2-4 mg). I have to get my husband to massage and stretch them for me during the spasms if he's around. I've also noticed some weakness in those limbs despite doing all of the things I normally do evenly. The pain is also worsening in those limbs and my current regimen is not working so any input on that would be welcome too. (lyrica - 50-100mg AM/150mg PM, celebrex 100mg AM/PM, hydrocodone 5/325 up to 2/day, tizanidine 2-4mg up to 3/day, lidocaine patches)

Any tips? Tricks? I see pain management tomorrow so going to ask them what they think but looking for things that have helped others so I can bring them up. Thanks in advance!
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Old 07-02-2019, 05:24 PM   #2
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Originally Posted by annabanana123 View Post
I've started having a lot of muscle spasms and cramping in my two most affected limbs, which are unfortunately my dominant side. Its like I can't straighten out my hand and/or foot when it happens even with a muscle relaxer (tizanidine, 2-4 mg). I have to get my husband to massage and stretch them for me during the spasms if he's around. I've also noticed some weakness in those limbs despite doing all of the things I normally do evenly. The pain is also worsening in those limbs and my current regimen is not working so any input on that would be welcome too. (lyrica - 50-100mg AM/150mg PM, celebrex 100mg AM/PM, hydrocodone 5/325 up to 2/day, tizanidine 2-4mg up to 3/day, lidocaine patches)

Any tips? Tricks? I see pain management tomorrow so going to ask them what they think but looking for things that have helped others so I can bring them up. Thanks in advance!
That's been a while, so what did they say?

Hope you're doing OK.
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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 07-03-2019, 07:56 AM   #3
annabanana123
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They said it's progression and we adjusted meds, increasing the hydrocodone mainly. They also said to drink more sports drink to help with the cramping as apparently straight water isn't the best option. We'll see. So far it seems a little better.
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Old 07-06-2019, 02:52 PM   #4
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They said it's progression and we adjusted meds, increasing the hydrocodone mainly. They also said to drink more sports drink to help with the cramping as apparently straight water isn't the best option. We'll see. So far it seems a little better.
Try V8 juice with extra fiber, which has slightly lower sodium than some of the other versions. I found a rec for it written by a person with dysautonomia, who said it was a cheaper purchase than sports drinks, gave servings of vegetables , plus the fiber helped move things along. I drink it 2x a day & I also make my own hydration drink with fresh lemon, orange juice, sole salt, sugar, boron.
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Old 07-08-2019, 01:21 PM   #5
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short story... I went to a doctor at Scripps..Integrated Pain Management. When I first met him and told him I have CRPS the FIRST thing he said was "We don't treat patients like you". My heart and whole being just dropped but I had to stay strong. I found this doctor by calling a compound pharmacy and asked them what doctors prescribe LDN. They gave me his name and I did my research. He told me he has no problem prescribing me the LDN. While talking to him he wrote down on a post it note the name CALM. It is from a company called Natural Vitality. It has been a life saver. When I feel a pain attack (thats what I call it) coming on it instantly calms me down. Like a more peaceful brain. It takes my cramping away within less than 30 min also. A BIG plus. It is a magnesium powder. I like mine warm. Other night while in a deep sleep I hear my husband moaning and grabbing my arm. lol He was having a bad cramp in his leg. I got up and made him a drink. It stopped. By the way I have been on every drug out there. Oxy, fentynal, morpheine, lyrica, plus about 10 more. My body does NOT react to these. I take trazadone to sleep at night and that is it. I have asked my doc for norco NOT because it takes pain away..it gives me energy. I saw a documentary on it. Im not alone. My kind loving doc gave me a rx for 12 pills. lol YEP only 12. We have free drugs on our insurance and they will only give me 7 at a time! I am very angry but when my family says MOM you need to get out of the house or I have chores to do the norco gives me the energy to make it thru the day. I cant fight the system but still dont understand why they dont understand every patient is different and I am obviously NOT dependent or addicted. My doctor also emailed me and said she would have to prescribe NARCAN in case I had an overdose. I declined it 55$. I see what everyone else is taking and I can only get 7 pills. Try the CALM. I hope this helps and thank you for letting me vent.
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Old 07-08-2019, 01:37 PM   #6
annabanana123
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Originally Posted by shelbie4u View Post
short story... I went to a doctor at Scripps..Integrated Pain Management. When I first met him and told him I have CRPS the FIRST thing he said was "We don't treat patients like you". My heart and whole being just dropped but I had to stay strong. I found this doctor by calling a compound pharmacy and asked them what doctors prescribe LDN. They gave me his name and I did my research. He told me he has no problem prescribing me the LDN. While talking to him he wrote down on a post it note the name CALM. It is from a company called Natural Vitality. It has been a life saver. When I feel a pain attack (thats what I call it) coming on it instantly calms me down. Like a more peaceful brain. It takes my cramping away within less than 30 min also. A BIG plus. It is a magnesium powder. I like mine warm. Other night while in a deep sleep I hear my husband moaning and grabbing my arm. lol He was having a bad cramp in his leg. I got up and made him a drink. It stopped. By the way I have been on every drug out there. Oxy, fentynal, morpheine, lyrica, plus about 10 more. My body does NOT react to these. I take trazadone to sleep at night and that is it. I have asked my doc for norco NOT because it takes pain away..it gives me energy. I saw a documentary on it. Im not alone. My kind loving doc gave me a rx for 12 pills. lol YEP only 12. We have free drugs on our insurance and they will only give me 7 at a time! I am very angry but when my family says MOM you need to get out of the house or I have chores to do the norco gives me the energy to make it thru the day. I cant fight the system but still dont understand why they dont understand every patient is different and I am obviously NOT dependent or addicted. My doctor also emailed me and said she would have to prescribe NARCAN in case I had an overdose. I declined it 55$. I see what everyone else is taking and I can only get 7 pills. Try the CALM. I hope this helps and thank you for letting me vent.
thank you!! Wow, only 12??? I get up to 3/day of the 5/325. I cannot imagine trying to function without but they both give me energy and dull the pain enough to function.

I'll check out CALM. I also have anxiety meds that work well for the actual anxiety part it's just the muscle cramping they don't help.
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