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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-12-2010, 01:53 PM   #1
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success with rsd

hi everyone. When first diagnosed with rsd, i was disheartened to not see anyone with success stories so I write this in hopes that someone else will benefit from what i have been able to achieve and that there is hope. Two years ago and fell, broke my right wrist in seven places. I had plates and pins put in and when the splint was removed, my fingers were "frozen" in place like a claw and i could not move them. I had all the symptoms of RSD. My surgeons PT worked for weeks with no success in moving the fingers without severe pain and then finally set me up for a nerve block in my neck. The nerve block did not work at all, but recommended that i try a neurotin called Gabapentin. He told me that gabapentin was a seizure medication, but it was discovered to be helpful with RSD. starting with a 600mg dosage, we increased it to 1800mg and most of the burning disappeared. I also began seeing a different therapist who had some knowledge of rsd and i went daily for several months. I also was seeing a massage therapist weekly for one year and she helped destress my hand. Slowly, my fingers got better and are now almost normal. I attribute the gabapentin to stopping the pain and my hand therapist in gaining use of my hand back. I have very little pain unless i forget to take a gabapentin. I think the combination of going faithfully to pt immediately after diagnosis, and the gabapentin is what my lifesavers were. Its been three years now and i know how lucky i truly am. I hope someday there will be a cure and no one will have to suffer thru this anymore.

 
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Old 04-12-2010, 04:07 PM   #2
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Smile Re: success with rsd

Hi Cassie,

Thanks for sharing your story. I'm so glad you found that "magic" combination that worked for you. That's wonderful. Thanks again for letting us know.

Sharon

 
Old 04-13-2010, 10:30 PM   #3
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toughkid HB User
Re: success with rsd

Thanks for sharing a happy ending with us. It's true that you don't read many of these. I try and look at the brighter moments on this journey and one of them iis fnding this group to "talk" to....Lynne aka toughkid

 
Old 05-09-2010, 01:36 AM   #4
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popstarrdiva HB User
Re: success with rsd

Hi Cassie!!!
Thanks for your happy ending story. I always feel better after massage or physio. I think that "acting" as normal as possible. Using your body as normal as possible helps to restore more normal function. That's what I read anyways. Lol Soooo much reading in the last few years.....
I try, but haven't figured out neck function as my neck & shoulders just BURN if I sit up or walk for too many hours......
Also, here's another happy story.... I no longer feel intense pain in my legs eh... They don't know why, but they have gone mostly numb.

 
Old 05-14-2010, 09:55 AM   #5
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Re: success with rsd

Cassie,

I'm so incredibly happy for you that you have gotten so much success with your crps. So many times here on the boards we hear the horror stories and new diagnoses of people. It is always heart breaking to hear of someone else and someones family going through this horrible disease. It brings such hope and happiness that someone out there is able to go on with their life and get better. I wish there were more happy endings in the rsd world but the ones we do hear help us get up in the morning to fight and hope for the best. Thanks for your positive post.
Take care and stay warm,
Deanne

 
Old 07-13-2010, 01:12 AM   #6
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uGreen HB User
Re: success with rsd

Hi ,
I am new to the site and I wanted to say hi to all and cassie2002 thank you for your story .
I was recently diagnosed with CRPS 1 following last winter injury at work , I am on Gabapetin for last four weeks and I have had more progress at PT in last two weeks than in last six months . I still have a lot of pain 24 to 36 hours following PT but I can do way more than before . According to my MD we caught CPRS at early stage and he expect me to fully recover. Now if I sound like complete moron sorry it is one of side effects of gabapetin in my case.
Thank you and good luck to all of us.

 
Old 07-15-2010, 12:07 AM   #7
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toughkid HB User
Re: success with rsd

Welcome... I'm glad you were able to get an early diagnosis.. that usually yields the best treatment results. You can find alot of information here and many people who are on the same journey. There will be times you want to stop trying..avoid the pain,, but keep on keeping on! Lynne aka toughkid

 
Old 07-19-2010, 12:37 PM   #8
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Re: success with rsd

ugreen, i am so glad that you are making progress. the gabapentin really took the burn and pain away enough so PT was so much easier. a really good PT is important too. for obvious reasons they have to be careful not to create more pain for you and at the same time there will be some pain so they have to "walk a fine line". If you are making progress thats a great sign. My first therpist got no where except create more pain, but thank goodness she gave up and sent me to vermont work enhancement and rehab center. i became very competative with myself and i did lots of machine work that was tied into a computer so i could watch the screen and try to beat the day before results. if yours is a work related injury, ask your caseworker if they would give you a free sessions of massage therapy. i really could feel the stress leave my hand and the sensation of that is hard to put into words. my caseworker was so freaked out when she was told i had rsd that she told me she would authorize anything i thought i needed so i did massage for 1 year, and PT for about 6 months, tried accupunture but after 5 sessions i stopped. if they wont cover any, it might be worth it to try it on your own at least once to see how it feels. it was also helpful in desensitizing. i was very of anyone touching my hand so she helped me that aspect too. like toughkid/lynne says you gotta just keep plugging away at it. Although i have a small amount of loss, its so close to "normal" that i dont have too many issues. i have also been able to cut my gabapentin from 1800 mg to 1200 mg. i am planning to try to drop down to 600 mg and see how that works out. if you or anyone would like me to post some of the things i did at home for exercises please let me know and i'll post them. one thing that felt awesome to a hot hand was to have a huge bowl of plain white rice and run your hand thru it. it felt very soothing and helped the desensitizing of the skin. so i wish you all well, if i can help in anyway or answer any questions, please dont hesitate to ask. Sue

 
Old 07-19-2010, 10:17 PM   #9
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Re: success with rsd

Sue.. I think it would be great if we could start a list of do-it-yourself exercises, so to speak. I also did the rice stimulation, did the alternating hot and cold water, tapping out the beat to music helped alot and now I am weaving. The left hand/right hand alternating hopefully will add to the messages I'm sending to my brain to function correctly..also, using my left arm more is helping build it back up from the atrophy I was experiencing due to lack of use. I'd love to hear what you have done for yourself. Thanks in advance... Lynne aka toughkid

 
Old 07-20-2010, 01:33 PM   #10
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Re: success with rsd

my therpist gave me different level of putty, i started off squeezing the easiest and worked up to the hardest plus it felt cool in my hand and was soothing. she also gave me hand vice with springs to squeeze that i could raise the levels on as i progressed. daily, i soaked in my bathtub and put a good amount of epsom salts in the water. an acqaintance insisted it would help. cant prove it but with everything i was doing, it was just one more thing that "couldnt hurt to try". i had flat box with small dividers in them filled with things like beads, coins, earrings, paper clips, cant remember what else that i would put in my lap while watching tv and try to pick them up. although the rice was nice and soothing, i would try to pick pieces of that up also. most of the rest of my free time was just trying to stretch out the fingers. i constantly was opening and closing my hand and tryin to stretch them from a claw position to straight. the first time i touched my thumb to my pointer finger it was cause for celebration. so there is some food for thought. i post some more when i have more time. in the meantime everyone, please keep trying, dont give up!!! best wishes! sue

 
Old 07-21-2010, 10:21 AM   #11
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Re: success with rsd

[ post some more when i have more time. in the meantime everyone, please keep trying, dont give up!!! best wishes! sue[/QUOTE]

Those are some great ideas, Sue. The epsom salts provide magnesium into your body which is supposed to help. I have also used the large rubber bands from pt for strenghth training at home and also like to try petting my dog as often as she'll cooperate with me since the stretching out of my fingers is good and also the tactile sensations of her fur to desenstize my nerves. Since I have alot of yarn ahndy, feeling the diff. textures is good as well. I also do alot of my exercises while watching tv or talking on the phone. I bought a very inexpensive headset for my phone so I can be hands free to do things with both hands while I chat.
If there is something you CAN'T do, go back to doing something you CAN. Just don't give up. Lynne aka toughkid

 
Old 07-22-2010, 09:49 AM   #12
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Re: success with rsd

lynne, i did the same exact thing to desensitize. i petted my dog and cats constantly, rubbed both palms on jeans, towels, sheets, blankets, and anything that had any textures to it. i really do recommend having a massage therpist or spouse/friend ect, do a light massage. it really does seem to de-stress the hand and wrist. my accupuncturist highly suggested massaging, rubbing, holding, and kind of babying it with my good hand. it sounded a little weird at the time but after he explained some of the reasoning, it made sense. at that point in time, i was willing to try anything. And i tried everything and anything and slowly humpty dumpty was put back together again. I'm not 100%, but the burning is gone, hand looks and feels almost normal, enough so i call it my "new" normal. it sounds like you are on the same path as I was, i was constantly doing something. One other important thing is to find someone who really cares about what you are going thru to unload on. A special co-worker took great pains to ask details about the disease and asked me about each therapy session and she became my sounding board which really helped alot. sometimes vocalizing what was in my head really helped too. I believe that early intervention is super important, and perserverence is super important for anyone. the very best thing anyone can do is to find a really good therpist and if its not working, find another, and another, until you find the right one. that will make all the difference in the world. And do not skip any pt sessions at all. I was blown away to have the receptionist tell me that most patients go to one or two sessions and never go back. lynne it sounds like you are on the same track and mindset that i was so i know you have a really good chance of recovery. although its been 3 years for me since the fractures (7) and surgery, it seems like just yesterday and at least if i have a relapse, i know what i need to do. so I'm really wishing you and anyone going this much success. I know my condition was not quite as severe as others and i pray that someday there will be relief for all. Hugs! sue

 
Old 10-19-2010, 07:41 AM   #13
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Re: success with rsd

Thats great! I suffered a crush injury to my foot that has required two surgeries in two years. I developed RSD/CRPS type 2 shortly after the injury. Because this is a workers comp issue, they refused the first surgery for over a year after the initial injury. Its over three years now and my second surgery was just seven weeks ago. Somehow this time I feel worse. And to top it off I have developed an infection at the site of the last stitch. I have been to pain specialists with no luck and been in physical therapy. I am now waiting to see a doctor to see if I qualify for neuro modulation. I would prefer severing of the peroneal nerve but we will see. The damage in my foot apparently is severe and I have had a neuroma removed both times. This surgery the doctor had to do a tissue graft inside my foot with donor tissue. Sucess??? Wonderful for you but unsure for me.

 
Old 10-24-2010, 02:59 PM   #14
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Smile Re: success with rsd

Hi I just read your post. I am very happy for you. I just got diagnosed with
RSD I'm a nurse whom had a pt scratch my upper arm she had Mrsa I then ended up with it.Wound finally healed then started having burning numbness and constant severe pain in my arm. I went to neurologist he gave me Lyrica
thenCymbalta along with NeuropathB. This is a workman's comp case so I've seen several drs. and having a heck of a time getting the diagnosis RSD to my claim. Also diagnosed with Depression. My life has been turned upside down
But it's good to see the is a lite at the end of the tunnel. Good for you
and may God Bless ya...

 
Old 10-25-2010, 12:09 PM   #15
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Re: success with rsd

carracing, it sounds like they are trying similar neurotins for you, i know my doctors said that lyrica was an option but the gabapetin took hold so i never tried it. my diabetic hubby takes lyrica for neurothopy in his feet but i dont think it helps him alot. its amazing that something like a scratch, stubbed toe or strained knee can cause all this. i was also workmans comp but i was sooo lucky, my caseworker said do anything you can that helps so that was really important and helpful. medical doctors, not so great. still alot of skeptics and lack of knowledge so i find that support really hard to find. i think thats why finding the right physical therapist makes all the difference. although i have some limitations and will probably take neurotin the rest of my life, i am gratefuly beyond words, but sometimes feel like i have survivors guilt for those that arent as lucky. i really struggled when i originally wrote the post, I didnt want my post "success with rsd" to be pompus, just was wanted to give other some hope. i hope you are able to find something that works for you, whether its more unwanted surgery or meds that works for you. i think some of the research was right, gotta start pt and meds asap immediately and fight with everything you can. as you probably have seen, depression also comes into play, looking back i probably was slightly depressed too but i was fortunate that a co-worker became my emotional support person, so please try to find someone to talk to either a friend or professional. at my PT they did have a therapist on staff available that i probably should have talked to but never did. dont hesitate to do that, its easy to feel alone and without support with this. and if you dont feel that the PT is helping, try to find another who may be more familiar with RSD. it could make all the difference. i sincerely hope that you are able to find the combinations that will allow you to find less pain and peace. bless you! sue

 
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