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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Bella and welcome to the community. Wish it weren't because of rsd.

The biggest no-no is ice. Do not put ice on the rsd limb because it just causes further constriction of the blood vessels and also more pain. Epsom salts in the bath has helped the pain for a lot of people.

Sympathetic nerve blocks are usually one of the things done as early as possible after being diagnosed. If the rsd is in the arms or upper body, they're called Stellate Ganglion blocks. If you have it in your legs and/or feet, it a Lumbar block. A pain management doc is usually the one to do blocks and most times also takes care of all the meds. It takes a combo of meds to try and help things. I'm taking norco(10mg vicodin), baclofen(muscle relaxer) and lyrica. Depending on how your body is and what helps your pain is something to be worked out with you and the doc. A muscle relaxer, such as baclofen or soma helps the muscle spasms and jerking limbs. Lyrica, Neurontin,Topomax are a few others that a lot of people take to help with the burning sensation, try to help also lower the pain and any other issue it happens to help while on it.

Physical therapy is another thing. The saying if you don't use you, you lose it.....is so very true for us. Not using the limb(s) will cause atrophy and eventual loss of the limb completely. I don't mean loss as in amputation just not being able to use it at all.

Diagnostic tests that can aid in maybe diagnosing rsd is a bone scan or a thermogram. With a bone scan it's 50/50 whether it'll actually show up on it or not. It just depends on if the rsd has caused bone changes or not. A thermogram shows the temperature difference where the rsd is. If your skin is cold to the touch it'll show where or if hot then where the heat is. RSD won't show up on any other tests like an MRI or a nerve conduction test(EMG). All that shows is if there is any nerve damage in the area.

I can't think of anything else right now. Do you have any specific questions or worries/concerns that you want to know about? Just ask! :D

Hugs,

Karen
Welcome Bella,
This site is wonderful. There are many people who can help with questions, and all the other issues we have.
My definitive test was called a 3-phase bonescan. It takes alot of time. I have what is called "hot RSD" and my RSD foot lit up like a Christmas tree on the scan, and my other foot -- you could hardly see it. The test involves coming back to the hospital (outpatient) 3 different times so they can scan to see how the blood is absorbed, etc etc. I had a surgery in my foot in July of 2007 and I was diagnosed with RSD September 2nd, 2007. We've got an RSD specialist here in the San Diego area. The MRI tests shows if there are bone problems associated with RSD.
I'm currently on Lyrica 650 mg daily, along with 120 mg of Cymbalta. Both are for nerve pain. I also take an occasional Vicodin.
I've not had any nerve blocks, and I hope I don't need them in my future because of the low percentage they help. Plus, everybody is different with how long they can help. Some are helped for a day or two, others are helped for a couple months. And, many aren't helped at all. So for now, I don't want one. Everyone is so different and our pain levels are all different and the location of our RSD can be different. RSD is just soooo weird.
I work 3 hours a day at a middle school. I was working at the elementary school level for the past 8 years so this is a big change but so far, I'm liking it. I gotta practice up on the math though -- LOL! At the end of last year I thought I was gonna die because I hurt sooooo bad. I knew summer was coming in 3 weeks so I just had to put up with it. My summer was great because I wasn't walking so much like I did at school. So, we'll see what my future holds. There are days I hurt and don't want to work. SSD/SSI both say you have to be off for 1 year before I can collect and since I don't put into California state disability, I can't collect that so...I would have to go 9 months without pay and that would be pretty rough. My school districts long term disability is 3 months at 1/2 pay.
So, I wish you well, and I'm hoping your pain lessens, and keep us posted on how you're doing after your block, ok?
Take care,
Deb:)
[QUOTE=RoseinSanDiego;3719958]Welcome Bella,
This site is wonderful. There are many people who can help with questions, and all the other issues we have.
My definitive test was called a 3-phase bonescan. It takes alot of time. I have what is called "hot RSD" and my RSD foot lit up like a Christmas tree on the scan, and my other foot -- you could hardly see it. The test involves coming back to the hospital (outpatient) 3 different times so they can scan to see how the blood is absorbed, etc etc. I had a surgery in my foot in July of 2007 and I was diagnosed with RSD September 2nd, 2007. We've got an RSD specialist here in the San Diego area. The MRI tests shows if there are bone problems associated with RSD.
I'm currently on Lyrica 650 mg daily, along with 120 mg of Cymbalta. Both are for nerve pain. I also take an occasional Vicodin.
I've not had any nerve blocks, and I hope I don't need them in my future because of the low percentage they help. Plus, everybody is different with how long they can help. Some are helped for a day or two, others are helped for a couple months. And, many aren't helped at all. So for now, I don't want one. Everyone is so different and our pain levels are all different and the location of our RSD can be different. RSD is just soooo weird.
I work 3 hours a day at a middle school. I was working at the elementary school level for the past 8 years so this is a big change but so far, I'm liking it. I gotta practice up on the math though -- LOL! At the end of last year I thought I was gonna die because I hurt sooooo bad. I knew summer was coming in 3 weeks so I just had to put up with it. My summer was great because I wasn't walking so much like I did at school. So, we'll see what my future holds. There are days I hurt and don't want to work. SSD/SSI both say you have to be off for 1 year before I can collect and since I don't put into California state disability, I can't collect that so...I would have to go 9 months without pay and that would be pretty rough. My school districts long term disability is 3 months at 1/2 pay.
So, I wish you well, and I'm hoping your pain lessens, and keep us posted on how you're doing after your block, ok?
Take care,
Deb:)[/QUOTE]

Thanks for the info. I was on cymbalta but it didn't help. I occasionally take soma too. I am currently on SSI and totally poverty level...thank god for my parents help. Plus I have a 7 1/2 yr old boy. There is absolutely no way I can work.

Also have a question: I have daily fevers they used to start @ 1:00 pm and go up to 103.0 like clock work everyday. Now they are all day, every day between 99.0-101. This has been going on over 2 years! Has this happened to anyone?

Can someone please give me a list of questions and comments I should make for my Neuro appointment so I can have a thorough exam/tests. I know some of you RSD pros have been through appointments and perhaps have figured it all/mostly out.

I am getting an X-Ray on my right hand...does this show anything? It says it is for carpal tunnel on the rec. form.

Also do any of you have you limbs go "dead." Do you have the bugs crawling sensation under your skin? I used to get the terrible burning under skin but that only comes and goes now. Thank GOD! Also when I took a warm shower yesterday my symptoms got worse???

Is 75mgs a day of oxycodone normal or high? It has been the ONLY thing to work for some relief. I have been on it all! I think I need an x-tra nighttime dose (15mg) bringing total to 90mg's does this sound alright. have an appointment with pain doc. tomorrow. Also when you have other surgeries/procedures done and am in need of pain medicine how does that work? It seems my body is so hypersensitive and pain is magnified.

THANKS ALL!!!

-Bella
Hi Bella,
I'm so sorry that you are suffering like you are without a diagnosis. That is terrible to deal with. I too have the "dead" fealing in my limbs, and at times have the crawling sensation. My RSD is mostly in my right foot - but is spreading up my leg and into my hip - not diagnosed as doing so but I feel it. For releaf I sit under a heating lamp or in the sun - or in our spa - no jets just the warm water - the shower hitting my leg or foot is too much for me. My leg and foot are just too sensitive. I'm one of those who can't even take the puff of the a/c comming on or the wind blowing on my foot - I always wear a sock - even though the sock bothers my foot - it is less than the pain of an unexpexted "jab" like a breeze - those send me to the ground like someone dropped an 8# sledge hammer on me. I'm also on some very strong medications but they allow me to have a psudo-normal quality of life - by that I can interact with my family like a normal person and not hide in my bedroom all the time shivering in pain wanting the world to go away and not hurt me any more. I don't work - but I can at least interact with family and friends and carefully choose a few activities a week to do outside of the house. I've started to work on potted plants - and am having a pretty yard again - it is little things that are big victories for us. Or at least that is how it is for me. I wish you the very best of luck and I hope that I have helped you in some small way.
Lissa





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