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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 02-16-2010, 07:13 PM   #1
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Newly Diagnosed RSD-Right hand

I broke my arm (in two places) on Dec 13th....had the cast taken off at 5 1/2 weeks. The doc I was seeing at the time recommended THEIR PT (big surprise). 1st session was uneventful...second session they put me w/an assistant who hung my wrist over the side of a table and started pushing claiming (basically) no pain no gain. During the time seeing this practice, while I complained about the nerve pain and swelling they could see...nothing was ever mentioned about RSD. we saw a huge facility for orhopedics near my house and decided to give it a try....the doc immed said "Possible RSD" and prescribed meds and physical therapy. I've seen my PT 3 times...she's degreed,is a PT and OT. First she warms me up and then masage and then works with my hand slowly. After all that she gives me exercises to do w/ diff equipment.

I cannot say I feel that there is any improvement yet....and have noticed numbness in the fingers of my other arm. If I lay on my right side my left arm goes to sleep.

I am right handed and losing my abilities w/that hand more than stinks.

My doc has me on neurontin, celebrex and vitamin c. Would like to hear from other sufferers and also any natural remedies out there

 
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Old 02-17-2010, 05:57 PM   #2
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Smile Re: Newly Diagnosed RSD-Right hand

Hi and welcome to the board. Sorry about your new possible diagnosis. If I were you, I think I'd see a pain management guy. They seem to know the most about RSD and its treatments. Orthos don't seem to have the greatest knowledge on the subject and a good one will tell you that, in a lot of cases.

As far as natural remedies, I'm sure someone will be along to talk about what has helped them. I don't have any firsthand knowledge.

Welcome again and good luck.

Sharon

 
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Old 02-17-2010, 06:41 PM   #3
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Re: Newly Diagnosed RSD-Right hand

Thanks!

I asked the physical therapist why they said "possible RSD" when it is quite obvious from all my symptoms. She stated until the bone deteriorates they wont say "absolutely."

I find the numbness the most irritating symptom...the pain is tolerable (but that may be because I am on heavy duty meds)..my hand being so terribly swollen and the fact that I cannot make a fist or bend my fingers well is also annoying.

All in all its no fun

 
Old 02-18-2010, 04:56 PM   #4
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Smile Re: Newly Diagnosed RSD-Right hand

NO fun at all!! I've been dealing with it for the past 24 years...got it when I was 15 so I've accumulated some knowledge along the way. The fact that your PT says they won't call it RSD until the "bone deteriorates" sounds a bit odd to me because they say that happens in the later stages of RSD and by then, any treatments they could have given you might not be helpful and it could be too late. In your research, have you come across docs saying that the earlier the treatment for RSD, the better? That's what I've always read, but maybe things have changed??

I don't know. I just don't want to hear of one more person who, because of incompetent docs (not saying yours is one), has to deal with RSD for the rest of his/her life. I guess all I'm saying is to do your research on RSD and on docs in your area and think about seeing a pain management doc.

Sharon

 
Old 02-18-2010, 05:01 PM   #5
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Re: Newly Diagnosed RSD-Right hand

physical therapy seems a waste of time as well.

Just canceled my PT for tomorrow....made my appt w/someone good/experienced/educated and they stuck me with a young kid who was still in training. When I asked if they were double booked they said "oh, if you schedule w/one of us you could get any of us!!" I don't think PT was doing any more than I am doing at home.

So I came home fuming to put it mildly!!!!

 
Old 02-19-2010, 05:52 PM   #6
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Smile Re: Newly Diagnosed RSD-Right hand

I don't blame you AT ALL!! I hate places where you can get any "PT" at any time and sometimes, it can be a PT assistant. I've been extremely lucky with PT, but I do know of places that do what you had to go through and I'm not a fan!

Sharon

 
Old 02-19-2010, 08:34 PM   #7
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Re: Newly Diagnosed RSD-Right hand

See a pain specialist! Dont wait. Ortho is ortho they are not pain specialist or neurologist who treats RSD. A pain specialist can manage RSD and do a stellate ganglion blocks to help RSD improve/or remission. Your lucky because if it is caught in the first 3-6months and you get a stellate block it can greatly improve. After a year it becomes chronic and outcome isnt as good. I also had an injury to the arm and ortho was managing it and missed the RSD and by the time i went to a pain specialist it was over a year (i still tried blocks) and my RSD/CRPS is now generalized CRPS in both arms and legs. I was in therapy recently and a guy had come in, like you, who had a fracture and they diagnosed RSD early-his first 2 blocks did little and the 3rd one worked! Do yourself a favor and see a pain specialist &/or neurologist. (believe a neurologist can also do blocks).

 
Old 02-21-2010, 06:42 PM   #8
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Re: Newly Diagnosed RSD-Right hand

I'm calling the neurologist in Ft Washington, PA this week

 
Old 02-23-2010, 05:18 AM   #9
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Re: Newly Diagnosed RSD-Right hand

Quote:
Originally Posted by ParrotMom59 View Post
physical therapy seems a waste of time as well.
....
So I came home fuming to put it mildly!!!!
Hello ParrotMom....!

I am also *totally* right-handed. 8 months ago, broke my wrist, 2 surgeries by 2 diff. docs, 2 hand specialists. "fuming"...? Hah! I was - still am - BALLISTIC! The frustration of not being able to do even the most basic things drove me crazy. I didn't know; but, there's a diff. between "P.T." and "O.T. AND it makes a big diff. to the insurance company. I was told RSD/CRPS at week 6; but, "treatment" was NOT what it should have been. Get an O.T. and make sure you see the same one each session.

Yes.... "no pain, no gain". There are some very good studies that say if you really push yourself, the chances of remission are better.

ALL of the feedback you are getting here definitely coincides with my experiences. Everyone cares and You Are Not Alone! Since we are both right handed perhaps I can offer some support and "tips" from my travails.

J.D.
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Old 02-23-2010, 05:43 AM   #10
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Re: Newly Diagnosed RSD-Right hand

Quote:
Originally Posted by ParrotMom59 View Post
I cannot say I feel that there is any improvement yet....and have noticed numbness in the fingers of my other arm. If I lay on my right side my left arm goes to sleep.

I am right handed and losing my abilities w/that hand more than stinks.

My doc has me on neurontin, celebrex and vitamin c. Would like to hear from other sufferers and also any natural remedies out there
Hey ParrotMom!

If you've seen my other post, I guess we are kinda in the same boat. I was also offered neurontin and similar. I declined because, IMHO, those are for "adjusting" the way you perceive pain and do nothing for the actual pain nor help with rehab. VERY necessary for those who have heavy duty chronic pain however. --- I have lived a long charmed life without any major injury nor illness until THIS. As a result, I have been <still am> going thru all the "Stages": "Why Me?" - "Frustration" - "Anger" --- The next Step is "Acceptance". However, I refuse to accept this! I just push myself until the tears flow, take a break and then do it again. "Anger" works for me

I think it is working. I can tolerate touching things now. I have more ROM and grip - just a bit more each week.

RE: "natural remedies" --- OK... *MY* Tip of the Day: Get some therapeutic putty. It comes in diff. colors which indicates how "stiff" it is. I find that it feels good to just squeeze it and play with it all day long. Since even eating is problematic left-handed, I have that putty in my right hand when I( am at the table.

J.D.
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Old 02-23-2010, 05:49 AM   #11
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Re: Newly Diagnosed RSD-Right hand

Quote:
Originally Posted by ParrotMom59 View Post
I am right handed and losing my abilities w/that hand more than stinks.
ParrotMom,

Sorry if I am posting too much this AM.

Here's an interesting SIDE EFFECT that I noticed early on. I enjoy a beer now and then; but, I noticed that I would lose my hearing if I tried to drink a beer.

Yes, trying to find my mouth left-handed, I would end up pouring it in my ear!

Hope you know that's a joke....?

J.D.
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Old 02-24-2010, 07:45 PM   #12
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Re: Newly Diagnosed RSD-Right hand

I was told the neurontin does do something with the nerves.....so I am taking it for another couple weeks to see if it helps. also the celebrex, vitamin b6 and vitamin c.

Went back today as it seems I know have carpal tunnel in my left hand most likely do to over use.

So I'll be wearing a brace on my left hand to bed along with a heating pad on my right hand..............

 
Old 02-25-2010, 03:23 AM   #13
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Re: Newly Diagnosed RSD-Right hand

Quote:
Originally Posted by ParrotMom59 View Post
I was told the neurontin does do something with the nerves.....so I am taking it for another couple weeks to see if it helps. also the celebrex, vitamin b6 and vitamin c.

Went back today as it seems I know have carpal tunnel in my left hand most likely do to over use.

So I'll be wearing a brace on my left hand to bed along with a heating pad on my right hand..............
Good Morning!

Until I was told I had RSD/CRPS 8 months ago, I had never heard of it... Found this Forum and discovered that it can "migrate" / "mirror" and appear in the other hand. But, you say it's carpal-T from "over use". Hope that you have family/friends to help! I cannot imagine how frustrating it must be with BOTH hands! I had a brace for the first few weeks. Sleeping more than an hour or two was so annoying. I still have difficulty sleeping more than 3-4 hours before the hand/wrist wakes me up. Been up since 3:30 AM again today.

I saw that you are in Ft. Wash / PHL area - Hang On! You are getting another huge storm. Hope the cold doesn't affect you too much.

Yes: - from my reading, no one has a real understanding of this. Everyone seems to have different symptoms / reactions which makes it all the more weird. Folks here post that we all need to find our own paths.

The unconditional support and understanding I have found here is GREAT! Hope that you can find a bit of comfort here too!

J.D.
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Old 02-25-2010, 11:53 AM   #14
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Re: Newly Diagnosed RSD-Right hand

Hi. Ortho says possible because it is not there specialty. He should have referred you to a pain specialist to get the diagnosis. PT/OT cant diagnose they can only treat what the dr. ordered. I was seening ortho for over a year before he sent me to a pain specialist. Don't wait. If its early enough they can try blocks to get it under control. Time is crucial. Call your family Dr. and ask for a referral to a pain specialist saying ortho suspects RSD.

 
Old 02-26-2010, 05:05 AM   #15
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Re: Newly Diagnosed RSD-Right hand

Quote:
Originally Posted by luvlifeagain View Post
Hi. Ortho says possible because it is not there specialty. He should have referred you to a pain specialist to get the diagnosis. PT/OT cant diagnose they can only treat what the dr. ordered. I was seening ortho for over a year before he sent me to a pain specialist. Don't wait. If its early enough they can try blocks to get it under control. Time is crucial. Call your family Dr. and ask for a referral to a pain specialist saying ortho suspects RSD.
Yes, you are absolutely correct: "PT/OT can't diagnose" Like you say, it's probably best to say the OT/PT "suspects" and get referrals.

I really like my OT despite the fact that she is "aggressive" and hurts me

Yesterday's session! Great! She challenged me to pick up some coins and I COULD! Of course, it was REAL money which always motivates me

And! That grip-o-meter test gadget showed that I have improved from only 10% to 40% vs. my "good" left hand! That's progress and I'll take it!

J.D. <who is having a great day!>
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