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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Just Diagnosed with CRPS Type II - Any Advice?


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Old 04-29-2014, 06:44 PM   #1
Sasu11
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Just Diagnosed with CRPS Type II - Any Advice?

Hello Everyone,

My name is Sue. Back towards the end of December I had a bad fracture to my heel and had to have surgery... and just recently I was diagnosed with CRPS Type II. RSD I am very new to all of this and very worried, and was wondering if anyone here had any advice to give. I'd be very appreciative to learn anything that has helped any of you -- have any of you improved? Have any of you had remission? What has helped -- and has anything made it worse?

Please help, I am having a very hard time finding any resources or specialists or anything, and I am very concerned!!

Thank you all so much,

-Sue

Last edited by Sasu11; 05-02-2014 at 07:29 AM.

 
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Old 05-05-2014, 09:45 AM   #2
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Hi Sue. I was diagnosed in August 2012. I have not found anything to make mine better yet. I'm still hoping. I now have a hot tub and I use it several times a day and it will take my pain level from a 8.5 or 9 which is where it is most of the time to a 6.5 to 7 and last about 20 to 25 minutes. Then it goes back up. That is the only thing I've found for me that helps

 
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Old 05-11-2014, 07:11 PM   #3
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Re: Just Diagnosed with CRPS Type II - Any Advice?

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Hi Sue. I was diagnosed in August 2012. I have not found anything to make mine better yet. I'm still hoping. I now have a hot tub and I use it several times a day and it will take my pain level from a 8.5 or 9 which is where it is most of the time to a 6.5 to 7 and last about 20 to 25 minutes. Then it goes back up. That is the only thing I've found for me that helps

 
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Old 05-11-2014, 07:14 PM   #4
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Jonathan.

I had CRPS I went to Calmarx Therapy in Rhode Island and it helped me tremendously. They use back scatter technology. I am very thankful for their help. Today I have very little symptoms.

 
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Old 05-24-2014, 02:48 PM   #5
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Re: Just Diagnosed with CRPS Type II - Any Advice?

I've had RSD for 20years. The beginning was a maze, I was lost at sea till I found some very good info from RSDHope. I also found a pain doc that did not look at RSD a hopeless. It was a lot of trial and error. Blocks, pain meds, Physical Therapy. The PT kept me "moving"….. some of it had to be done under sedation because the pain was unbearable. The thing is it worked. I did not loose the use of my limbs….yes I was not the "old me"……but being able to move and take care of me…….limited but I function.

You can find a path through or around this disease, it take a lot of patience,research and a willingness to keep on going.

I'm sorry you have this disease and hope you find what you need.

gentle hugs

JudieV

 
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Old 05-24-2014, 04:39 PM   #6
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Judie,
Thanks for your words of encouragement. This disease is scary as hell. I have researched it to much and am literally terrified. Trying to stay hopefull. I am sorry you have this as well. So far I am going to PT, swimming daily and just taking amytriptaline and antiinflammatories, considering Neurontin but the thought of gaining a lot of weight scares me as I am getting over heel surgery (which started this whole mess).
Anyway, I hope they can come up with something to help all of us. God Bless.
Sue

 
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Old 05-24-2014, 04:43 PM   #7
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Jonathon,
Thanks for the advice. How much is the Calmarx therapy? I really need some hope.
My Doctors are not giving me any. SO far just doing PT, blocks, swimming daily, and taking amytriptaline and antiinflammatories. And it is moving from my foot up my leg.
Scary stuff.
ANyway take care. I am glad you are doing better.
Sue

 
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Old 05-24-2014, 04:46 PM   #8
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Re: Just Diagnosed with CRPS Type II - Any Advice?

HI,
Thanks for responding to my post. This is scary stuff. I hope I am strong enough to go along this crazy ride. Sorry you are in so much pain. I hope you find some relief.
Take care. Sue

 
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Old 05-25-2014, 01:43 PM   #9
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Post Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Sue,
Your doing all the right things. Some Docs are real downers when it comes to RSD. The Doc that diagnosed me was a wonderful diagnostician but once the diagnosis was made all he could offer was " your not going back to work…..ever and there is no cure and it's rare with little info" Part of this was true. As long as I was on pain meds…..no work. Couldn't come off them without screaming. I accepted that and the blocks……..but started my own research. Right out of the starting gate I hit the Medical Board on Prodigy! There was a whole group…..called "RSD & Friends". (Prodigy went the way of progress) Friends they were,one of the members Fedex'd me a 4" thick envelope with info on RSD. More than that I found hope. I also found a wonderful real time support group.

I could not tolerate the Neurontin. Thankfully I tolerate Lyrica. In relatively low doses. I take 75 mg 2x day. I add one more on the bad days. I also use a lot of Motrin. I've opted not to use the opioids due to depression occasional getting a hold on me. I also take Baclofen for the muscle spasms.
Enough of my tale.
Keep coming back!
Hugs
Judie

 
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Old 05-25-2014, 05:02 PM   #10
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Judie,
Do you mind if I ask if the Lyrica has made you gain weight? Also wondered if you took biphosphonates during your first six months of diagnosis of having this. I am at month 5 now and wondered if anyone has done this and if it was helpful in reducing bone pain. THanks again.
Sue

 
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Old 05-25-2014, 05:04 PM   #11
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Judie,
Do you mind if I ask if the Lyrica has made you gain weight? Also wondered if you took biphosphonates or calcitonin during your first six months of diagnosis of having this. I am at month 5 now and wondered if anyone has done this and if it was helpful in reducing bone pain. THanks again.
Sue

 
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Old 05-27-2014, 07:58 AM   #12
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Sue,
In the beginning there wasn't much around except blocks,anti-depressants and pain meds. It wasn't until a Doc in Arizona did some work with Lidocaine infusions that my pain doc in NY decided to give it a try. Took him almost a year to work up the protocol & when he did insurance labeled it 'experimental". So I bit the bullet & paid out of pocket. Extensive PT and the infusions allowed me to get rid of my wheel chair! I stayed on the pump for 3 years, needing it less & less as time went bye. Moving from Long Island to Florida also helped. back to trial & error.

I've always fought weight issues and just about all meds have the side effect of weight gain. I think I gained more weight from depression than meds. I was in total denial of how severe the depression was.I ate to compensate. Hope my long winded explanation helps.
Hugs
JudieV

 
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Old 05-27-2014, 01:50 PM   #13
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Re: Just Diagnosed with CRPS Type II - Any Advice?

Hi Judy,
I am in Florida also. You aren't in Naples by any chance are you. If so any reccommendations for Doctors? So far having horrible luck finding a decent Doctor who knows anything about this. Very frustrating. The one I saw today insists I have acupuncture which I know is not to be done with CRPS.
Sue

 
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Old 05-28-2014, 12:09 PM   #14
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Quote:
Originally Posted by Sasu11 View Post
Hello Everyone,

My name is Sue. Back towards the end of December I had a bad fracture to my heel and had to have surgery... and just recently I was diagnosed with CRPS Type II. RSD I am very new to all of this and very worried, and was wondering if anyone here had any advice to give. I'd be very appreciative to learn anything that has helped any of you -- have any of you improved? Have any of you had remission? What has helped -- and has anything made it worse?

Please help, I am having a very hard time finding any resources or specialists or anything, and I am very concerned!!

Thank you all so much,

-Sue
Hi sue, I'm newly diagnosed with CRPS type2 as well a month ago. I'm scared and confused as well. I had an ankle dislocation and fractured tibia and fibula in 2009. My last surgery was in 2013 and I've gone downhill ever since. The accident was in my left ankle and now my right foot aches equally. I continually feel like all10 of my toes are broken and my feet are on fire. My knees, wrists and thumbs ache also. I'm scheduled for a sympathetic nerve block next week. A month ago I lost feeling in my left ankle and fell and sprained the right ankle and chipped a bone. This is so hard to understand what's happening. I pray you can find help. I was sent to a neurologist and diagnosed. I'm hoping this is the beginning of some ease of the constant pain we have. Keep in touch and we may be able to share some information that will be helpful. Donna:

 
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Old 05-28-2014, 12:31 PM   #15
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Originally Posted by Sasu11 View Post
Hi Judie,
Do you mind if I ask if the Lyrica has made you gain weight? Also wondered if you took biphosphonates during your first six months of diagnosis of having this. I am at month 5 now and wondered if anyone has done this and if it was helpful in reducing bone pain. THanks again.
Sue
hi Sue, about 3 years ago after my first 2 ankle surgeries they tried Lyrica on me after ankle injections didn't work. I was on it for a year and a half and it didn't ease the pain much and I did gain weight. No matter how little of my favorite foods or how many salads I ate, I couldn't control the weight gain. Now 2 years later and just being diagnosed with CRPS type 2 I have been prescribed Gabapentin until my sympathetic nerve block next week. My feet and toes on both feet were on fire. I've been on the Gabapentin for just a week and I'm not sure it's helping at all. Thank goodness I have a really good neurologist that really seems to care that I'm in so much pain. He said if within a week I'm not feeling any relief he'll either try something else or combine it with another drug. I hate taking prescriptions but now I need relief. I have a feeling I will start gaining weight again especially since I'm less mobile but I don't care. I hope the Lyrica brings you some comfort. It seems like what works for some may not work for others. We just have to keep trying. Donna

 
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