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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Does anyone know any specialist for RSD in Connecticut? I am going to a Neurologist at UCONN healthcenter. My Rheumy thinks I have RSD...have all the symptoms...plus I also have Post Reactive Streptococcal Arthritis and a myriad of other issues. I will be going on Medicaid in Jan. right now I have private insurance (from my ex).

What questions/tests should I talk to the Neurologist about. If anyone could steer me in the right direction I would love it. I have found out I need to be my own advocate I had been so sick for over 2 years. And, basically for a long time I was brushed off!All "in the head" sorta attitude! "Drug seeker" etc...I could write a dissertation on all the crap. It has/is frustrating and many a tear shed. At times the pain was just so horrific and I couldn't Function physically at all. I'm sure you all understand!!!

Any help would be appreciated! Any information to a newcomer about this horrible disease would be appreciated too!

-Bella
Thank you for the information about the ice...I thought it made me feel worse! I have RSD allover but more significant in my wrists/hands/arms...pain get HORRIBLE even with pain meds. Some days so unbearable. My swelling is quite significant too. My C-Reactive protein is very high and even on Prednisone it didn't go down, my Rheumy. was perplexed.

I also used to get tons of sores on my feet/hands..not so much now. I get uticaria and other weird changes in skins color and temp changes. I have so many symptoms it would take hours to write;).

I am going to ask my pain doc about the nerve blocks...do Nero's do that? I think my hands NEED it REALLY badly since no meds work at all take it! How exactly is it done? I know when I get needles put in me I get like a severe flare. It happened really bad when I had my EMG. My EMG came out normal. Is that common? I think my nerves are hypersentive. Like when I have anything done my reactions are severe. I had drilling done on alot of teeth. Went back more than 5 times and I still cannot eat on the teeth because of shooting nerve pain. Is this common. Plus my dentist said he has "never seen someone need so much novacaine" and my "body sucked it right up."

I have had x-rays, MRI'S and other things done...not sure if I had a bone scan though. I had 2 stress fractures in my left foot/ankle and never injured myself??? I went to 2 ER'S and NEVER got an x-ray, was walking on it like that for 1 month, felt like my bones were exploding. They thought it was just my arthritis and gave me pain meds which didn't work. FINALLY I got an MRI and they found it. There was also some atrophy and other issues in my muscles/tendons. Have some osteo in spine and just tons of other joint, muscle, bone issues. My vitamin D was VERY low. I am on high doses and I think it is helping my cramping. I also have VERY low...half of the lowest normal range. Dis you have this? Is this related to RSD? Not sure why my doc. isn't addressing it.

I actually was doing physical therapy, ordered by my ortho, and was instructed to stop because it was making my symptoms worse? If you don't mind me asking...how many mg's are you on of pain meds? I am on 75mgs a day of oyxcodone but I think I need 1 more dose a day (15mg) because I wake in pain about 2-4 am. Is that alot? Or normal? Without it I wouldn't even be able to function. There are still alot of things I cannot do but I am functioning.

I am going to post again with other questions but I can't type anymore. THANKS AGAIN!!!

-Bella
[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 Michelle-
My problem is no one will give me a difinitive DX of RSD. I have a Rheumy that suspects it (been to tons of docs., tons of tests etc). I have the post streptococcal arthritis DX. along with possible RSD. So when I go to the Neuro...will they assist in making this DX? Does a Rheumy usually do this? I have been to so many docs. that are perplexed by what's going on it's like no one wants to take it on...actually I have been told that too! I was at my pain management clinic yesterday and before you see the doc. you see a counselor and I keep a log/diary of symptoms etc...she said she has never heard of RSD and fevers. During the worst part it was up to 103 daily for like 3 months..now it is normal to low grade. Good to know that fevers are a possibility. I daily have that fluish feeling.

She is like you need a DX when I asked about nerve blocks. I only spend like 2 mins with the doc and like 45 with her. I dunno...at least they are treating the pain but I really need TREAT the "disease." I was suffering so much before at least now I am living a semi-normal life...not completely pain free but not completely disabled.

Let me know about the ketamine TX. I only new it as a rec. drug a friend of mine from yrs ago told me about. What do they do with it. I used to get lidocane injections in my jaw for TMJ. Do they do those in your hand? What can they do to help the extreme pain in hands/wrists? Pain meds don't help.
How can I make sure I get this Neuro to really take me seriously and help me especially with my hands?

Thanks!

-Bella





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