RSD and small nerve neuropathy
 

Hi Everyone,
I am new to the site so I will give you a little background. I began my journey with RSD about a year and 1/2 ago. I am not sure what caused it. I had a severe back injury 15 years ago and the doctor thinks it possibly is from that. I also had a stress fracture in my shin last year. Following that I had knee problems for which the ortho dr. gave me a shot of cortisone without an MRI due to the fact that he figured it was a tear in my miniscus and that is how he would treat it with or without the MRI. I am beginning to wonder if the beginning of the RSD was when my knee swelled after the shin fracture. It moved very quickly into both legs, both arms & the right side of my face. They thought maybe it was MS. My brain MRI did show 3 spots of demylination but neuro dr. said it did not look like MS.
He did a small nerve biopsy which was positive. I went for a 2nd opinion with one of the best doctors for RSD and he said that is what I have.
I have some questions I am hoping some of you can answer.
Did anyone else have a positive small nerve neuropathy biopsy?
Any suggestions for the incessant burning in my feet and hands?
On a side note I have tried Neurotin, Tegretol, Lyrica, Lido patches.
I am currently taking Nortriptyline every night, Tramadol PRN, Vicoden PRN.
I am also almost through a series of ketamine (outpatient). It helped my arms and the right side of my face and did take away some of the electric shokes and tremors in my calves.
I saw some people writing about Epsom salt, does that help with the burning feet? I constantly fell like I am standing in a snow storm with frozen feet.
I am trying so hard not to let this take over my life but sometimes I feel like I am losing that battle. I use to exercise 4 or 5 times a week but the doctor now says the only I can do is walk and my feet hurt so bad I can't even get myself to do that. I still am working full time and praying I can keep that up.
Any suggestions or thoughts anyone has for me would be appreciated.
It is just nice to know I am speaking to people who can understand what I am talking about.:Sigh

Hi. I am sorry about your struggles and pain. May I ask how long you were on the meds and how high a dose. When this first happened to me I was on all the various meds but then went off due to them not helping or side effects. After some procedures that went badly I tried the meds again and though have pain I have made progress. It can take awhile to feel the changes and also a combo of different meds. I am not sure about the biopsy. I have PN also and I think some on there have had that so you may want to go on that board too.I understand the forzen feet. I have that at any cooler temp. Like dead and it semds the pain so high. I have been told it is all part of this condition so if you can find something for overall pain relief it should help this symptom. Have you tried any nerve blocks? What about muscler relaxers? You can try epsom salt baths. I do not like them but have heard others do. I just like warm baths. Have you been tested for auto immune conditions?What did the neuro say the spots were a condition of?I am sorry I wish I had more answers for you. Please take one day at a time. I know that can be hard especially through the bad days but I think something I try to do. If you want an email buddy I am here. Sending thoughts

Welcome to NT, sorry you have a need for us.
I have fullbody RSD with organ involment.
I water walk at the Y twice a week and take an exercise class. All in the water you are weightless and there is no pain. I like the cool pool on the days my skin is on fire it cools the burning. I do the classes in the theraputic (spelling ?) pool.
I have tried a lot of meds it took a while to find what worked for me. I tried the out patient Ketamine it didn't work me good luck to you on that.
It's had to not let RSD rule your world. I decided a long time ago I would not allow my life to be defined by this condition.
I have a great group of doctors my Chiropractor is a God send. I pray a lot. I believe my conditon is an answer to prayer (weird I know). I use to be very active in the community and worked a full time job and raise two great kids. I use to pray to God to slow my life down so I could work more for him. He put the breaks on. I have had the opportunity to do some wonderful things. If God brings us to it he will give us what we need to get through it. He tells us that in the Bible and his word is true.
Take care and again I say welcome.
Sherrie

Hi, i am also new to RSD and whoa, this has been quite the rollercoaster ride for me. I had 2 left knee surgeries 7 and 6 years ago, here just recently my left knee went haywire on me. I had an MRI which showed speckled marrow replacement w/ fatty marrow and I guess that was the last nail in the coffin and was DXed about 2 weeks after. I have an awsome physical therapist who is working with me right now b/c i lost some of my theigh (all will soon learn that i cannot spell lol) muscle and we are also working on desensitizing my knee. Whenever my foot feels that "i'm frozen" burning pain, i just put on some really soft, fuzzy socks and move it around to get the blood flowing. I do the same thing when my knee or leg starts to feel that way, I start moving. Yeah, at first it hurts, but the more I get the blood moving, the better it starts to feel. No, it does not feel 100% better, but it's not that burning, stinging, pins and needles anymore, it's more tolerable. I hope this helps, like I said, i'm completely new, hasn't even been a month. Just stay focused and positive and vent, vent, vent to those who you feel will understand and not judge you. :grouphug: I am sorry that you have this, but it is what it is and we just have to keep keeping on. :hug:
Val

http://i26.tinypic.com/xrlms.jpg

You will find positive support here as well as wonderful members to assist you. I am Dew, nice to meet you:D

Ketamine treatments
 

sorry that I am writing you back on your message but i can't figure out how to do it differently. When did you have the ketamine treatments. I will have my last in the series in November. I have gotten some relief but not a lot. It did take away the pain in my upper arms and that is at least a relief. They believe I would do better if I had it done in hospital but my ins doesn't pay and are currently refusing to pay for outpatient. I had to pay cash last time I went (fighting that) How did you know you had organ involvement? Thankks for the idea of the Y. I am going to look for the closest to me. I do have a health club but they are really expense. The one use to belong to has no pool. I am trying very hard not to let this define who I am but the constant pain makes it so hard. I don't think that your comment is weird about the prayer. I ask God almost everyday what his plan for giving me RSD can be. I believe it is to teach me or help me or someone close to me with something. I just happened at a time when I was finishing most of what I needed to get done. Raised 3 great kids. Finished my undergrad and grad degree in five years got a great job and then RSD. Don't understand and am very sad about it. I just try to keep praying for answers!:confused: Thanks againg for the welcome!

Thanks for the welcome. I does seem like there are a lot of great/caring people on this sight.

Hi, Thanks for the suggestions. I do put fuzzy socks on actually when I am home I live in slipper socks. Is speckled marrow a sign of RSD? They have not suggested physical therapy to me yet. Although, neuro told me I have muscle waste in my left thigh and foot drop in the left foot. It is really nice to talk to people who understand. My family reallly tries and are great but unless you walk in RSD shoes you have no idea. Although, I'm sure it is hard on the families also. I am trying to stay positive about once every week or two I just lose it after I shed a few tears I feel better and go on for another few weeks.:hug:

Dear hopeful
 

How do they administer a series of Ketamine treatments??

Hi Hopeful,
I am glad you have found this site and I know the support and information will be invaluable to you...
I hope you are getting some kind of emotional support from a therapist that you can relate to...that will help you vent and have a safe place to share thoughts and feelings that family or friends may not understand..

I work full time too, and on many days I don't know how I maintain, but I must out of necessity..I am barely able to walk and the burn pain and swelling are the most challenging..
The epsom salt foot soaks help with the swelling but the burn is my nemesis..

I'm sorry to hear your insurance didn't cover the ketamine..but it sounds as though you did get some relief...(Glad your fighting for payment !! Grrrrrrr !!)
Congratulations on all your accomplishments, raising you kids and grad school !!!
the RSD picks us randomly...I, too, am trying to find out why I was one of it's choices... my wish is to be able to enjoy the walking and hiking I did pre-RSD..I don't know if that's part of the great plan...these days I just want to get a handle on the pain and burn!
As you can see by our choice of message board names, we won't give up !!

Hope4thebest :grouphug:

Hopeful,

I see a psychologist every 2 weeks to deal with my life changes because of RSD/CRPS. It has made a huge difference in my perception of the major changes that have taken place since my dx. I had to stop working because of the daily med cocktail I have to take to ease the horrid pain. The meds calm the burn and deep aches, and the by-products from the meds make it impossible to focus on anything for a prolonged period of time. I attempted to do a job(2 months) that was suppose to be sedentary(Ha!), and it did not work out.

That was a very difficult step for me, to stop working and stay at home. This all after achieving a dual masters degree in fine arts and psychology. At first, I was so angry about working so hard for my education, and the pedigree of my degrees...as in, "what was the point?" I no longer feel that way, as my education enhances who I am.
http://i25.tinypic.com/2zsv8cp.jpg
Keep your chin up:hug:

Sherrie, Hi I have a question for you
 

Hi Sherrie, could you explain what the organ involvement is? How it is diagnosied? And how it is treated. I too have full body, have been told some symptoms are organ related but do not understand. any explanation wouold be appreciated. thank you cz

Ketamine treatments
 

Hi I don't think if I answered you on this. The way mine were done is a series of out patient treatments. First 2 weeks of mon-fri and then the two day treatments are given two weeks after that, then a break for 2 more weeks and 2 days of rx then a break for a month and 2 days of rx. then a break for 3 months and 2 days of treatment. Then they decide what to do next. The rx's are given in a infusion room with other patients. I hope that answers your question.

Hi,
I haven't started with a therapist yet. Did you get one who deals in people with illnesses? I understand having to work out of necessity. That is what makes it so scary, wondering what will happen if I can't. I think I need to stop getting a head of myself. I find it hard not to think ahead. But these messages are helping me a lot. Before this I did not get much of a chance to talk to others with RSD. I'm finding this site can be a wealth of information and support. I hope first you get a handle on the pain and burning and then are able to go back to your walking and hiking. I am going to pick up some Epsom salt tomorrow and give it a try. The burning is my nemesis also. I use that word hope so much my daughter told me I should get a tattoo that says hope. I told her I don't think I'll be getting any tattoos!!!!!