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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 11-14-2003, 08:42 AM   #1
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Jewel2 HB User
RSD & Itching?

I have been recently diagnosed with RSD in my left hand after a wrist reconstruction surgery in late August and a second surgery two weeks ago. I have the classic symptoms including burning, excruciating pain when using my fingers, swelling, excessive hair growth, discoloration, etc. But I also have intense itching in each knuckle that bothers me more than any of the other symptoms. I haven't read or heard of this symptom so far in my research. Does anybody else experience this? What helps?

Also, if anyone else has developed RSD post surgery, can you offer any encouragement about recovery?

Thanks a lot!

 
Old 11-14-2003, 09:41 AM   #2
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Welcome first off Jewel.. but sorry to hear about you having RSD.

About your itching, I had this also when I was first diagnosed last year. It does bug you more then the burning and stabbing pain at times nad if you try to itch it, it only makes it worse and then add on top of the pain from the RSD. Its common to have itching with RSD. I have had RSD stage 3 in my right foot and leg for over a year now and I got RSD after having foot surgery for a mortons neuroma. For the itching the best thing i found out was just warm soaking it in the tub with epson salts. My doc put me on meds after it bugged me so much and plus my symptoms were geting worse. He put me on neurontin and that took the zaps away and it also helped the itching. The itching is because of the nerves not geting the right messages and it does what it wants and the neurontin helps controll that..

Like I said before I got RSD after a foot surgery and it started 4 days after the surg. and my docs diddnt beleve me that i was in this much pain and even though i had a purple foot and it was swollen 3 times its size they said it was all normal.. well needless to say that doc was a ..well you know.. and i had to help myself get treatment nad find a hosp to do the nerve blocks . the only way i found out about them was through the net nad here... I am 14 mos with RSD and i am in stage 3 and have severe foot deformities due to the RSD attacking the tendons and muscles in my foot and leg. The first thing I would tell you is see a Pain Mang. doctor.. you need to start on meds, like neurontin and pain meds to help the RSD, and then starting having the blocks done... yours is very early and it is best treated in the first mos of diagnosis to put it into remission, after 6-9 mos.. it gets harder and harder after that.

Also Phy. Therapy is a biggy too to keep your range of motion active. also remeber no ice on your RSD. this will only flare it up and make it 10 times worse..

I hope im not scaring you but you are early in your diagnosis and you need this advice to put you into remiison. I dont want anyone to end up like me and being totaly disabled due to this and so young too.. (Im only 25) and have a spinal cord stim implanted also

Keep in touch and let us know how you are doing!! And ask any questions at all .. we have all been through so much and through different procedures, so one of us will have anwsers for yah.. hope youare doing ok .


Bryn

 
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Old 11-14-2003, 01:31 PM   #3
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Jewel2 HB User
Thanks for your in-depth reply and advice. I'm trying not to panic about this, but I've wondered at what point I need to be more proactive in treating the RSD. I am taking pain meds as needed and am in PT 3 times per week.

Hindsight being 20/20, I now realize that I first had RDS symptoms 2 days after my initial surgery 2 1/2 months ago. I expressed concern about the excessive swelling, funny coloring and finger immobility right away, but it was dismissed by my Dr. as within norms - ha! He now acknowledges the problem, but has turned me over totally to the therapist. (He's a good Dr., but he seems to be ignoring me.) You mentioned seeing a pain management Dr., but what about a neurologist?

Also, if I keep my hand in a neutral, slightly curled position I don't feel much pain. It's only when I move my fingers that they hurt. Physical therapy on the fingers is pure torture! Is this consistent with typical stage I RSD?

Thanks.

Quote:
Originally Posted by RSD_Angel
Welcome first off Jewel.. but sorry to hear about you having RSD.

About your itching, I had this also when I was first diagnosed last year. It does bug you more then the burning and stabbing pain at times nad if you try to itch it, it only makes it worse and then add on top of the pain from the RSD. Its common to have itching with RSD. I have had RSD stage 3 in my right foot and leg for over a year now and I got RSD after having foot surgery for a mortons neuroma. For the itching the best thing i found out was just warm soaking it in the tub with epson salts. My doc put me on meds after it bugged me so much and plus my symptoms were geting worse. He put me on neurontin and that took the zaps away and it also helped the itching. The itching is because of the nerves not geting the right messages and it does what it wants and the neurontin helps controll that..

Like I said before I got RSD after a foot surgery and it started 4 days after the surg. and my docs diddnt beleve me that i was in this much pain and even though i had a purple foot and it was swollen 3 times its size they said it was all normal.. well needless to say that doc was a ..well you know.. and i had to help myself get treatment nad find a hosp to do the nerve blocks . the only way i found out about them was through the net nad here... I am 14 mos with RSD and i am in stage 3 and have severe foot deformities due to the RSD attacking the tendons and muscles in my foot and leg. The first thing I would tell you is see a Pain Mang. doctor.. you need to start on meds, like neurontin and pain meds to help the RSD, and then starting having the blocks done... yours is very early and it is best treated in the first mos of diagnosis to put it into remission, after 6-9 mos.. it gets harder and harder after that.

Also Phy. Therapy is a biggy too to keep your range of motion active. also remeber no ice on your RSD. this will only flare it up and make it 10 times worse..

I hope im not scaring you but you are early in your diagnosis and you need this advice to put you into remiison. I dont want anyone to end up like me and being totaly disabled due to this and so young too.. (Im only 25) and have a spinal cord stim implanted also

Keep in touch and let us know how you are doing!! And ask any questions at all .. we have all been through so much and through different procedures, so one of us will have anwsers for yah.. hope youare doing ok .


Bryn

 
Old 11-14-2003, 02:07 PM   #4
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Jewel...welcome to the board. I would echo all that Bryn said. One other point. Try not to keep your fingers curled, even though that's comfortable for you. My son David did the same, and his hand was becoming clawed. His physio made him squeeze a small ball in his hand, and practice at home. Eventually after five months of physio, three times weekly, his hand and wrist had more movement and his fingers uncurled.

Best of luck,
Edna.

 
Old 11-14-2003, 02:51 PM   #5
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Lindaa HB User
Hi Jewel,
I also developed rsd in August. After the big run around with doctors & being diagnosed with everything else, they finally agreed that it was rsd (although one dr changed his diagnosis last week to trigger finger with a little bit of rsd, as if there could be such a thing). I had a bad physical therapist & have been through the mill to get another one, which I see Monday. The one thing I learned is that you have to be pro-active. By reading alot on the Internet & learning from the people on this board, I now know what I need to do, sort of. I'm still new to this. People like Bryn & Edna are very knowledgable & helpful. I started stellate ganglion blocks three weeks ago. My pain management doctor is the one who gives them to me. I only saw a neurologist when I had the EMG done. I was also wondering if I sould see one. I think that you should talk to someone about getting blocks. I've heard that the sooner, the better.
Let me know how you are doing,
Best wishes & hugs,
Linda

 
Old 11-14-2003, 03:49 PM   #6
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RSD_Angel HB User
Jewel,

Like Edna said, please dont keep your hand in that position. Although it might feel good nad be less pain full it will only freeze like this nad cause more problems. I did that with my foot and it is frozen so that i can only walk on the outside of my foot and the rest is in the air. And i didnt move my ankle at all bc it hurt so bad and that too frooze up and i can not move that at all either. I will need major surgery to lengthen the tendons and lig's and muscles bc i did this nad it left the deformity.. again, trying not to scare you , but keep squeezing something and even put it in warm water and do it, but keep the range of motion going or you will loose it and the rsd only eats at the stuff you dont use.

As for the Neurologist, he is ok to see, he is just usually the doc that orders the tests like EMG's but he cannot do the blocks.. only a anesthisologist can. My pain mang doc is a anesthisiologist and has his own private practice and specializes in Pain Mangagement. I have only seen a PM doc and he is also the one that gives me the pain meds and the neurontin and elavil and does the blcoks and implanted the spinal cord stim. I would rather see a PM doc then seeing a neuro. only bc you will eventually have to see a PM doc in order to do the blocks or SCS or pain pump. And they know more about RSD then any other doc... why see a neuro only when in the end you are gonna need a PM?? just my 2 cents in on it.

Again, but with your RSD in such an early stage blocks need to be started to kick this into remission. You are in stage one but things can move quickly if not taken seriously and aggresivly. You have to take some things in your own hands.. we all have here and tell your docs how bad it is and you cant take the pain.

Have a good weekend.


Bryn

 
Old 11-14-2003, 06:59 PM   #7
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Hi Jewel and welcome,

You have come to the right place for information and support. I agree that you should look for a pain management doc. Some neurologists do blocks, but I guess they're a rarity. I did see one neuro who did them. There's literature out there that says that the earlier the better as far as the blocks go. Of course, there are people who had them right away and aren't doing well now and vice versa so everyone's different. But...if I were you, I'd try them to see if they help.

I've had RSD for 17 years. Originally, it started from a fractured foot, but it wasn't diagnosed for three years. Then I had knee surgery and it worsened from that. I don't have a whole lot of encouragement to offer you as far as RSD, except that it is dealable. It's a horrible thing to have, but you can manage with it as long as you have a good doc and a good attitude. When you're feeling down, coming here is a good start. Everyone is very supportive here. Don't ever feel like you're imposing on anyone if you ever need to vent or ask a question. That's great that you're going to P.T. Now, my opinion is that you find a pain management doc. Maybe your P.T. knows someone good that deals with RSD or you can go to or call a hospital near you and see if they have anyone who deals with RSD. Good luck with all of this. I know it's very overwhelming, but we are here to help you if you need it.

Sharon

 
Old 11-14-2003, 07:12 PM   #8
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Jewel2 HB User
Thanks so much to all of you for your advice and support. I feel very blessed to have stumbled into such a caring group of people. Edna, I went to Wal-Mart tonight and got a squeeze ball as I'm taking you all very seriously about the importance of mobility. Thanks again!!

 
Old 11-14-2003, 08:54 PM   #9
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Horsie Nutt HB User
Hi Jewel. I agree with what everyone has told you also. You have come to the best place for information and support. I'm sorry you have to be here, but please feel welcome, and don't be timid about asking questions or just coming here to vent if you need to. RSD is the most painful chronic condition one can get, it's even more painful than chronic cancer according to the mcgill pain scale (cancer is a 26 and rsd is a 42, labor pain is a 22), and rsd is not curable, but it is treatable, and the sooner you start treatments, the better the chance of getting it into remission.

Most people go to a pain clinic to see a pain management specialist, usually these are anesthesiologists. Stellate ganglion blocks are definitely what you need, it's the best way to try to get the rsd into remission and stop or lessen the pain. I agree also with the hot soaks with the epson salts. And whatever you do, do NOT use ice in any way, even for swelling! It will only make the pain worse and can cause the rsd to spread. Heat is the best thing, it really can help when the pain is acute. You'll probably needs pain medication also. It doesn't stop the pain, but it makes it easier to bear. If you has trouble sleeping, you may need something to help with that too. Please find a good pain management doc who is experienced with rsd. Most of us are on one antidepressant or another (or a combo of them) too.

Please read up on rsd on the internet. The more you know, the better you can make informed decisions regarding your treatment. Always remember that YOU are in charge of what the doc does or does not do, not the doctor! If you are not comfortable with something, for heavens sake, don't do it.

Please keep us posted on your condition. We really do care.
Sincerely,
Cathy

 
Old 11-14-2003, 10:07 PM   #10
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Hi All,
Something I'm not sure I understand - is there a cure for RSD or does it only go into remission? I've been to several websites and they talk about the symptoms and treatment options, but there are no statistics about recovery rates. Is this something that I'll always have to be concerned about in the event of future injuries or surgeries? My daughter has a bad case of MS so I'm very familiar with incurable illnesses and relapses and remissions. Is RSD similar in this respect?

Sorry to sound so ignorant, but I'm just trying to get a handle on this. It's unbelievable how one day everything is fine and the next you're trying to cope with something you've never even heard of before!

Thanks for your patience and support.

Julie

 
Old 11-15-2003, 08:13 AM   #11
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Hi Julie.....read your last post. That's the one question that's foremost in everyone's mind. Is it curable? It's the one that most professionals seem to duck too. For what it's worth, here's what David's been told. " We don't talk talk of remission anymore, we talk of plateaux" That's when the objective signs of RSD are gone ie sweating, swelling, discolouration and loss of movement. For some, like my son the pain never goes, and he is still cold intolerant. The pain increases with use, and he still has nail growth, and hair loss. He also has difficulty in sleeping (about two hours per night ) and his short term memory is affected. He has other problems too, but only because he has it in all four limbs. Can't leave you without saying that children do much better, because of the growth hormone. One young woman whom I have known since she was 15, and in a wheelchair, gets married next year. So there are some success stories around.
Keep your hand and arm moving, even through the pain. You won't damage it further with daily tasks. You have been diagnosed in the "window of opportunity" so there is a good chance you will beat this. My thoughts are with you.

Hugs,
Edna xx

 
Old 11-15-2003, 08:23 AM   #12
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Hi Jewel, no, resd is not curable, only treatable, and the sooner you start treatments, the better your chance of going into remission. It can spread in up to 80% of the cases if I'm correct, someone please correct me if my numbers are wrong, but that is why early, aggressive treatment is so very important.

Cathy

 
Old 11-15-2003, 07:15 PM   #13
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Hi Julie,

I agree with what everyone else has said so far. You don't sound ignorant at all for asking questions. Don't ever think that. This is a very safe place to ask questions so go ahead!! And in answer to one of your questions, once you have RSD, even if you do get rid of the symptoms, it is my understanding that any little injury or surgery can make it come back or go into another limb. Hope that answers your question.

Sharon

 
Old 11-15-2003, 09:49 PM   #14
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Jewel2 HB User
Thank you all for sharing what you know. Honestly it's not what I wanted to hear, but it's good to know what I'm up against and some options to combat it. I'll be on the phone first thing Monday morning.

How is it that I'm 42 and I've never heard of this before?! My heart goes out to all of you. I admire your courage and your ability to help others in the midst of your own pain.

Are nights (and first thing in the morning) worse for any of you? I dread going to bed because I know that I'll probably wake up in pain.

Thanks again to all of you.
Julie

 
Old 11-15-2003, 10:04 PM   #15
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Hi Julie,

First..about not having heard of RSD. You're not alone. I've had this for 17 years and it doesn't seem like there's been a whole lot of headway made since I was diagnosed back then. People in the medical field who you would think would know about it, don't. It's absolutely amazing to me. It's not like it's a new disease or anything. It's been around (or at least known about) since the Civil War. I would think that would be ample time for them to figure things out and at least know about it. And yes, I think night time is worse for a lot of us and for a lot of illnesses. I don't know why. Some people say it's because you're mind isn't busy like it is during the day so you think about the illness more. I don't really buy that. I'm really glad you've stuck around here. I think you'll meet a lot of nice people and get a lot of much needed support.

Sharon

 
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