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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Old 01-04-2014, 04:14 PM #1
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Question New to RSD/CRPS

Hi everyone! I am 42 and had Tommy Johns surgery combined with a sub muscular ulnar transposition on my left elbow. This was my 2nd ulnar transposition in a year. Within one month of therapy I was diagnosed with RSD. I am still undergoing therapy for the surgery and RSD. I am now having popping and locking of my left wrist. The therapist and doctor say that we will treat that later. Has anyone experienced this and what is it called? I am going back for a follow up soon but am anxious to know an answer. Thanks for being here!!
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Old 01-04-2014, 08:23 PM #2
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Originally Posted by irpuregenius View Post
Hi everyone! I am 42 and had Tommy Johns surgery combined with a sub muscular ulnar transposition on my left elbow. This was my 2nd ulnar transposition in a year. Within one month of therapy I was diagnosed with RSD. I am still undergoing therapy for the surgery and RSD. I am now having popping and locking of my left wrist. The therapist and doctor say that we will treat that later. Has anyone experienced this and what is it called? I am going back for a follow up soon but am anxious to know an answer. Thanks for being here!!
I am also new to this ,only 3 months into this. My fingers also pop and lock. I am interested in knowing what they tell you. I don't go back to any doctor for over a month. I live in a small town and there are no doctors familiar with this disease. Maybe we can compare our treatments
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Old 01-05-2014, 10:52 AM #3
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I am also new to this ,only 3 months into this. My fingers also pop and lock. I am interested in knowing what they tell you. I don't go back to any doctor for over a month. I live in a small town and there are no doctors familiar with this disease. Maybe we can compare our treatments
That would be awesome! I can tell you what I am doing in treatment right now. I am being put in the machine that blows hot corn husk on my hand. At home I am using putty to squeeze and then roll out and eventually make into a ball. I am also rubbing my hand with a rough towel They also had me doing contrast baths. Hot water for a min then ice water for a min, 6 times each, 3 times a day. I have read that this is considered a bad thing to do so I am going to talk to my Dr on Tuesday. I have more that I do but those thing are for me to try and build my hand back up and help to get full movement of my pinky and ring finger back. I will let you know how everything goes and would love to hear what goes on with you. I am in a small town in Georgia but since I was hurt at work so fortunately they pay for me to drive to a larger city for treatment
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Old 01-05-2014, 01:00 PM #4
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Welcome ir

Sorry, I replied to your other thread first lol, but as I said there, I'm sorry you have this. Do have a good look around the threads here as there are a lot of good folk and sound advice. Lots of support too, if you have a bad patch, as we sometimes do...

Please please PLEASE stop the contrast baths immediately, I didn't realise from your other thread that you'd already done some. Not surprised you said 'ouch'! They are a really bad plan (not your fault of course ), and very out-of-date thinking for CRPS treatment as they can and do cause spread and worsening of symptoms...

Just in case they haven't told you, please don't use ice anywhere on your body from now on either, as this can also cause spread, and really hurts

Try unperfumed Epsom salts in a warm bath, or wrapped in a damp cloth. It delivers vital magnesium to your system via your skin, and soothes the burn a bit, especially if you do it regularly. Vitamin C is another safe thing you can do yourself - it's been proven to reduce the risk of spread, and it's good for maintaining your immune system too.

Read up as much as you can to educate yourself, as this is your best protection against some of the older treatments that can cause further damage or increased pain. Some things are well worth a go, others shouldn't be touched with a barge pole! Unfortunately you need to know as much as possible, because many medics just don't (even if they claim to).

Take care of yourself and good luck. Keep posting!

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 01-05-2014, 01:22 PM #5
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Welcome ir

Sorry, I replied to your other thread first lol, but as I said there, I'm sorry you have this. Do have a good look around the threads here as there are a lot of good folk and sound advice. Lots of support too, if you have a bad patch, as we sometimes do...

Please please PLEASE stop the contrast baths immediately, I didn't realise from your other thread that you'd already done some. Not surprised you said 'ouch'! They are a really bad plan (not your fault of course ), and very out-of-date thinking for CRPS treatment as they can and do cause spread and worsening of symptoms...

Just in case they haven't told you, please don't use ice anywhere on your body from now on either, as this can also cause spread, and really hurts

Try unperfumed Epsom salts in a warm bath, or wrapped in a damp cloth. It delivers vital magnesium to your system via your skin, and soothes the burn a bit, especially if you do it regularly. Vitamin C is another safe thing you can do yourself - it's been proven to reduce the risk of spread, and it's good for maintaining your immune system too.

Read up as much as you can to educate yourself, as this is your best protection against some of the older treatments that can cause further damage or increased pain. Some things are well worth a go, others shouldn't be touched with a barge pole! Unfortunately you need to know as much as possible, because many medics just don't (even if they claim to).

Take care of yourself and good luck. Keep posting!

Bram.
Thank you for your reply!! I did the contrast baths for about two weeks and couldn't stand them!! I actually stopped them after reading so much about them. I do love the doctor that I have but I think that you are right about him being out of the know. I am going to try the salt and vitamin c. I have read that in several places.
I am glad to know that this site is here. I am so new to all of this and I appreciate all of the advice. So far I have good spirits. I should be going back to work soon. Since I am in Law Enforcement I will be light duty for a good while but work is work
Hope everything is well for you and yours!
T.J.
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Old 01-05-2014, 06:08 PM #6
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Here are the things I do. I do hot wax and mineral combo by putting my hand in melted wax that's between 115-125 degrees. About 6 dips put in a plastic bag then wrap it in a towel about 15 mins. I use a wooden roller, rolling only up toward my shoulder for blood circulation, bending my fingers up and down 15 times and help the ones that can't on their own. Touch all finger to the thumb. Make a C with thumb being the bottom of the C. Squeeze therpy putty 10 to 15 times. Rub a rolled up towel on a table with my shoulder over my hand,( or can use a scrum brush on the floor)roll a kids ball up and down the wall with my fingers (large ball) about 3 mins. Walk around the house with a 5 lb weight with only my bad hand for about 10 mins. I do these about 3 times a day when not working. TO ALL: If any of these things are NoNo's please let us know.

Last edited by murgir; 01-05-2014 at 06:15 PM. Reason: Adding
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Old 01-05-2014, 08:50 PM #7
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Originally Posted by murgir View Post
Here are the things I do. I do hot wax and mineral combo by putting my hand in melted wax that's between 115-125 degrees. About 6 dips put in a plastic bag then wrap it in a towel about 15 mins. I use a wooden roller, rolling only up toward my shoulder for blood circulation, bending my fingers up and down 15 times and help the ones that can't on their own. Touch all finger to the thumb. Make a C with thumb being the bottom of the C. Squeeze therpy putty 10 to 15 times. Rub a rolled up towel on a table with my shoulder over my hand,( or can use a scrum brush on the floor)roll a kids ball up and down the wall with my fingers (large ball) about 3 mins. Walk around the house with a 5 lb weight with only my bad hand for about 10 mins. I do these about 3 times a day when not working. TO ALL: If any of these things are NoNo's please let us know.
That all sounds familiar except the wax. Don't think I could take that much heat yet. 109 degrees is about the top of m scale.
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Old 01-06-2014, 04:06 AM #8
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I think I'd be wary of the wax, as that kind of heat sounds not dissimilar to a hot water contrast bath...and really, our skin isn't meant to be at that temperature for any length of time even if we're non-CRPS. If it helps you, then fine, but if it starts hurting or you notice any worsening of your symptoms in that hand then I'd stop immediately, or at least reduce the temperature a lot.

To warm up the cold, clammy, bluey areas of my skin I soak a flannel in hot water, then wring it out and use it to rub over my limb with a firm pressure. It's a sort of combination of desensitization, massage and heat, and gets the blood moving and skin woken up without subjecting my skin tissues to too much heat. I find it stops my knee going hot and fiery when I get into bed (it's part of my night time regime lol).

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 01-06-2014, 07:02 AM #9
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Thanks Bram. That's what they had me do in therpy (shock shock) the last time I did it, it did feel uncomfortable for the first time. I only did that once a day and not everyday Thank goodness.
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Old 01-06-2014, 10:08 AM #10
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murgir - I agree with Bram about the hot wax. I couldn't handle any heat on my hands, can't imagine how that high heat from the wax would do This hot wax sounds like contrast therapy. Contrast therapy is bad for RSD/CRPS, the cold is the worst, but the extreme temp change to the heat can be just as bad. If it were me, I would stop it. I went to PT for my hand and they made it worse, they did the heat and tens on it. The desensitization was torture, but in small doses it helped. They talked about contrast therapy and I said "see ya!"

irpuregenius - Sorry you are having to deal with this. I do not have popping and locking in any of my affected areas, so I cannot help there. Glad you stopped the contrast baths.

Good luck to both of you!
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