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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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Old 03-29-2009, 11:26 AM #11
Grammadur Grammadur is offline
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Default Thanks Ada!
Quote:
Originally Posted by dreambeliever128 View Post
Sorry to hear that you are going through this.

I think a lot of those meds cause weight gain. Neurotin and Lyrica both do in most cases.

As far as a lot of Drs. I think between us all, we have seen most all of them to get diagnosed and medical attention for RSD.

I really think the blocks will help you. Some people may stop too soon, some Drs. may use different meds, and sometimes they may now work but do give them the chance.

People have so many options of getting the help they need. I think Physical Therapy is very good if you find a PT that works with RSD and knows something about it.

HBO is used by people also and can help. I met a lady in Denver years ago that was doing it there for RSD and TOS and it was helping her.

Also, ketamine treatments seem to be something pretty new coming in to the light the past few years.

As far as meds, again, it depends on each person. I tried all of them until I got to Methadone and I loved it. I am off of it now but I took it for years and to me it seemed to have the least side effects for me.

Some people here end up with the SCS and some the pain pump.

We have found our way to help with the pain in a lot of cases, as someone else said, there isn't any cure.

I'm glad you found us and I do hope that you start feeling better soon.

Ada
Ada,

I've never heard of ketamine before - i'll look into it! That's what's great about this site. So many wonderful people with so much experience, knowledge and affection. It's refreshing. Too bad we share an awful bond - RSD.
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Old 03-29-2009, 11:44 AM #12
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Ada,

I've never heard of ketamine before - i'll look into it! That's what's great about this site. So many wonderful people with so much experience, knowledge and affection. It's refreshing. Too bad we share an awful bond - RSD.
Hi again Grammadur,

I am currently on 30mg Oral Ketamine. It is the ONLY pain med that helps for me a little and will usually take my pain own from an 8 and a half to a 6 and a half.

Most Doctors dont like prescribing Ketamine that much though as it is used on the streets by drug addicts. It is only usually used as a last resort if all else has failed. My Pain Management Doctor doesn't like me being on Ketamine that much because of my age aas he feels that it could mess up my hormones so I can only take it when I am in a really bad flare (which is getting too often now unfortunately)!

It is worth looking into the Ketamine though. There are a few people on this forum that are on it so it might be worthwhile speaking to them.

I wish you the best of luck and hope you find something that helps you soon!!
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Grammadur (04-05-2009)
Old 03-29-2009, 07:02 PM #13
hopeful11 hopeful11 is offline
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Hi Granmmadur. I have had the Ganglion blocks. They did not put my RSD in remission, however when the RSD moves up my arm it did help to stop it and keep it at the lower arm area. I also wanted to let you know that with the limb that has RSD, do not let anyone take your BP, or have any needle injections, if you can help it. I learn that one from experience!! I also have a lower memory loss. My Dr. saids he feels it is from dealing with the pain and using the pain medications. Hope this helps.
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Old 03-29-2009, 07:25 PM #14
dennyfan dennyfan is offline
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Originally Posted by Grammadur View Post
IF the block helps the pain, do you know if it helps the other stuff like confusion, lack of concentration, forgetfulness?
I have never heard anyone say that it helped those other things as well. I really dont know. I am sorry. espcially since I only had two & they didnt work for me. Hopefully someone who they worked for can answer that better.
Hugs, Denny
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Old 03-30-2009, 05:09 PM #15
Grammadur Grammadur is offline
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Default Thanks!
Quote:
Originally Posted by hopeful11 View Post
Hi Granmmadur. I have had the Ganglion blocks. They did not put my RSD in remission, however when the RSD moves up my arm it did help to stop it and keep it at the lower arm area. I also wanted to let you know that with the limb that has RSD, do not let anyone take your BP, or have any needle injections, if you can help it. I learn that one from experience!! I also have a lower memory loss. My Dr. saids he feels it is from dealing with the pain and using the pain medications. Hope this helps.
I appreciate the info about the B/P and injections in my arm. Believe me, if anyone gets close to that arm I holler
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Old 03-30-2009, 06:38 PM #16
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Default hey There:)
Hi Grammadur,

Welcome to the forum. I am sorry you have RSD and going through the by-products of RSD.

Are you keeping a daily diary? This will assist you in keeping your meds in check;also, it will be useful to have a diary to record your experiences.

A secret diary, that is for your eyes only. A place to vent...a place to write down what symptoms are popping up. Use the diary to remind you of questions you may have for your doc.

The meds can cause memory loss;however, the brain is effected by RSD. The entire body is effected by RSD. I do a lot of research.

You can always vent here..I am available anytime you wish to chat.

Stay Positive!


Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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