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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)

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Unread 12-28-2012, 04:07 PM   #21
fbodgrl
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I would get in and see a PMD or a neurologist. Just make sure they are familiar with RSD/CRPS before making and appointment. I was fortunate that the neuro I have seen for my migraines is also versed in RSD so it was easy to get an appointment to confirm the diagnosis.

I was dx over the summer and still working with my PMD to try and come up with a good mix of medication. Even with a dx there is no one pill that will help lessen the pain. I'm just muddling through and learning as I go.
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Unread 12-28-2012, 11:00 PM   #22
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I was told I'd never get a diagnosis until I went to one of the big urban doctors. They all treated me for RSD but didn't diagnosis it. I should have listened to them from the beginning but I didn't know who had my best interests in heart.

Avoid all operations but especially on the affected limb.
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Unread 01-27-2013, 12:07 PM   #23
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starting PT for my ankle on tuesday, scared is an understatement.
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Unread 01-27-2013, 01:46 PM   #24
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Originally Posted by cactusfoot View Post
starting PT for my ankle on tuesday, scared is an understatement.
The thing to remember is that if you do have CRPS or similar post trauma nerve pain, the pain you have and that you will feel in your PT is 'useless'. It's not like 'useful' acute pain which is indicative of something being wrong and is a signal that you can cause yourself more damage if you keep going.

I'm not saying that its nice or enjoyable or anything like that! Don't get me wrong, its deeply horrible. However, one of the things that is important is not to fear the PT or the pain that you feel. The fear makes the pain directly worse and it also limits you. Try and be as relaxed as you can and remember that the process is one that ultimately is supposed to be about making things better.

I hope it goes well for you.
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Unread 01-28-2013, 11:40 AM   #25
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Thanks Neurochic, appreciate the advice. My last PT was about 28 yrs ago when they repeatedly reopened the wound to prevent infection. With all the nerve damage and the size of the wound combined with being 8 yrs old I can say without hesitation it was the worst experience of my life. Here's to hoping it isn't nearly so awful this time around!
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Unread 02-01-2013, 12:57 PM   #26
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dont know if i can do it every week it's awful
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Unread 02-01-2013, 07:16 PM   #27
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However awful it is, you have to try and find the resolve to keep going. Physiotherapy is never going to be easy with CRPS plus any underlying physical problems that you've acquired over the years. However, you can't give up at the first hurdle. You've managed to keep going through very tough times already so its a case of digging deep, using the determination that you already have and battling on.

At least you need to give it a decent shot - it can take a few sessions to work out what pace things need to move at and what things will work best. It also takes a few sessions for you and the PT to get to know one another so it's worth hanging in for some time yet. There are times when you feel like you are making no progress, sometimes you have to go backwards in order to move forwards again. It's agony, its unpleasant and its miserable but its worth giving it a serious shot. If it was nice it would be a waste of time! You have a lot that you could gain. Even quite small physical gains could make a big, big difference to your quality of life.

Please don't give up, find it within yourself to keep going. There must be things or people who motivate you so perhaps think of that when you feel like giving up. It's always going to be a slow and painful process so try to accept that and don't get too frustrated because that will only make it worse. Hang in there and give it all you've got.
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"Thanks for this!" says:
loretta (02-01-2013)
Unread 02-01-2013, 07:52 PM   #28
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Originally Posted by cactusfoot View Post
dont know if i can do it every week it's awful
\

Cactusfoot, Neurochic is so right on--- I know it's awful-just take it one day at a time-one session at a time.
If it wasn't for pt and LOTS OF IT- I wouldn't be typing this with 10 fingers or I wouldn't be walking on two feet with all toes touching the floor. It really is tough, but NOW looking back, it was sooooo worth it. In the moment, it doesn't Feel that way. I took a darvocet just prior to my therapy, which looking back-I don't think did anything, but anyway, you might ask your Dr. if it would help to take a pain med.
Hang in there, and keep posting!!! The support will do you good and we care and want to know how you are. loretta
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Unread 02-01-2013, 09:26 PM   #29
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Loretta has just summed up what I was trying to say about how much you may need to put in to get a fairly small functional improvement which can make a massive difference to your quality of life.

I had endless physio for years both before and after my diagnosis and whilst I made only minuscule functional improvements, I am certain that in the long term this has had a real benefit. I have fewer sensitivity issues, I have more mobility than i would have had in my originally affected foot and ankle, I have probably got more mobility than I would otherwise have in my other limbs (all are affected) and I am sure my dystonia which affects my whole body from my toes to my neck and face is less severe because it could be much more fixed than it is. It also helps you feel better about yourself because its one of the few things you can actively do to help yourself. Swallowing pills isn't very satisfying!!
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Unread 02-01-2013, 10:40 PM   #30
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Quote:
Originally Posted by Neurochic View Post
Loretta has just summed up what I was trying to say about how much you may need to put in to get a fairly small functional improvement which can make a massive difference to your quality of life.

I had endless physio for years both before and after my diagnosis and whilst I made only minuscule functional improvements, I am certain that in the long term this has had a real benefit. I have fewer sensitivity issues, I have more mobility than i would have had in my originally affected foot and ankle, I have probably got more mobility than I would otherwise have in my other limbs (all are affected) and I am sure my dystonia which affects my whole body from my toes to my neck and face is less severe because it could be much more fixed than it is. It also helps you feel better about yourself because its one of the few things you can actively do to help yourself. Swallowing pills isn't very satisfying!!
Neurochic, thank you- I so agree with you. I know without a shadow of a doubt, the physio got almost all my shoulder/arm range of motion back. I didn't know I had RSD for 5 years. Even when it moved to opposite shoulder and more PT, it was worth it. I also know when it moved to my hand and it was frozen like a board and couldn't use it or even touch it, it was worth all the pain and trips for PT. Even though that hand didn't get full range of motion back and is frozen like a claw, I can type and have a little strength in it and can curl it to 4 o'clock position (left hand) I had significant delay in treatment-Rheumi doc here in AZ said I had RA. I knew that wasn't right, so traveled to Oregon to Ortho Sports Injury Group. The hand Doc saw it and said I think RSD. sent me for tests and next day was in PT. He gave me a stack of print outs on RSD and I didn't have a clue. Had a good neuro and ortho hand doc here in AZ and his PT people had experience in rsd and pt.
One thing they had me do at home 7 days a week, was get plastic bowls and put different textures in them, like cotton balls, sugar, rice, and put hands in them. I no longer have any sensitivity of touch to hands, feet.
I know without a doubt, the work was worth it, and when my toes starting curling, I did the same thing, daily till they touched the floor again, including swimming 3-5 times a week in warm swimming pool.
And I totally agree with you on the MEDS. They did get me thru some tough times, but I went off them. First, the neurotin- I was on 3200 mg. I had terrible daily electric shocks- bolting thru my body and brain-would have leg and feet spasms, arm and hand spasms. I don't know if the high neurotin stopped them. But, I went off neurotin and cymbalta. I had been on as high as 6 vicodin a day and 4 lorazepam a day and over a year and half ago, I decided to go off them 1 pill a month reduction. So, it's been a year without them. I do take meds to regulate blood pressure and heart rate. I do get syncope on rare occasion.
And take mirtazapine, an anti-depressant. I have to say if the eyes keep burning and the TN keeps acting up, I would take some pain meds on bad occasions. The feet are a daily deep burn, but I'm in no where near as bad a shape as I was tween 96 and 2010.
So, like yourself, I feel sooooo it's worth every possible effort. And I, like yourself, feel a large part was the PT and the 'at home' work helped with the 'outcome' of the 'present body' But going thru the PT is really really really hard- no getting around that memory.
Like someone else said, I also am glad you stopped holding back in posting and enjoy your posts and very apparent experience, knowledge,, or some kind of background that is respected. loretta
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