Reflex Sympathetic Dystrophy Newbie
 

Hello,

I was recently diagnosed with Reflex Sympathetic Dystrophy. I don't know where to start, or what to say really. Other than I am tired of hurting, and sometimes I feel like no one else around me really understands what I am going through. I feel down last July and fractured my ankle, and ever since I have been in pain. Sadly this pain is now creeping up my leg and into my lower back.

Some Question's I have:

My boyfriend wants me to try acupuncture. Has this method helped anyone?

My doctor want to put a Intrathecal drug pump in me. Does anyone else have this? Does it work?

Welcome WCD !
 

http://dl6.glitter-graphics.net/pub/...itki7bxvmj.gif

This RSD forum is absolutely amazing and you will find endless support here!
I'm glad you've come to NT!

Acupuncture is frequently talked about.....it may be helpful to use the 'search' key at the top of the page and type in that word and it'll bring up previous posts and discussions on this subject.....

A new sub-forum was created a few months ago specific to pain pump and SCS discussion. It is located in the main menu listed as a sub-forum in the "Medications" section. Here is the direct link to get you there, click on:

http://neurotalk.psychcentral.com/forum118.html

Lots of exciting things are happening over there and several are just now getting their PP's and are very excited!

It will be great getting to know you!
Just ask if you need help finding your way around. Everyone here is like family

Many here at the RSD forum will embrace you and share their stories and what they do to stay strong..... :grouphug:

Caring
Rae
:hug:

welcome
 

dont know about pumps as I have never had one of them. I have also not tried accupuncture. I have found that some things tend to irritate the nerves and symptoms more then it helps (ie ice). I would refer you to RSD sites, esp RSDA for information
tc and welcome again!
:hug:z

Hi WCD,
Welcome the the boards...I am sorry you were diagnosed with RSD and that you are in a lot of pain..

All of us here were at some point newly diagnosed and we understand how you feel, and the challenges you are facing..
You will find much information and support as the days and weeks go by and our RSD family respond to your posts and questions!

When I was first diagnosed (foot injury and surgery) I did a lot of research and became distraught at what I was discovering..
I have continued to educate myself and ask questions, and the initial fear has quelled, as I am learning all the different perspectives of this disorder.

Do educate yourself but share your discoveries with us and others you feel comfortable with in order to get a balanced perspective.

Early on, I did get acupuncture (she put the needles in my ear where there are sites that correspond to the feet, and I did get some relief from the burning pain. But as you will discover, everyone reacts differently to treatment and meds. There is a lot of trying out different combinations until you discover what is right for you. Has your doctor discussed blocks, meds,
physical therapy and/or other treatment before trying a pump?

It's important to take care of your emotional needs too, while you search for physical relief..
I'm glad you have a supportive boyfriend by your side!!!
Welcome to our RSD family!
Hope4thebest :hug:

Hi welcome to the boards though sorry for your pain. I agree has your doctor tried other treatments then the pump first? I thought that was one of the last treatments to try for this. I know some doctors will jump to more invasive before less is tried. That happened with me and the scs which I did not do but with that doctor I had not even tried a block yet and he wanted to do that. As for acupuncture I have not tried it but I did have a consult. I am too sensitive to even a small touch so I am too fearful to try it. From what I was told it can help with sleep,anixety,eating better etc which in turn helps your pain level since your body is overall more healthy. Like the other poster stated that everyone is different with what works and what does not.

Hello and i too welcome you to our support message board..oh gosh I am sorry for your rSD and the pain that accompanies it...i have had mine for almost 3 years now following rt. knee surgery...and it has been an education..I too, want to say..ask your Dr. if a bit less invasive intervention can be performed first, as blocks, yes, accupuncture and possibly medicine first. As it is still pretty early for you and the possiblity of some less invasive action may help you keep your RSD in check...I do have a Spinal cord Stimulator in place...For me, it did not turn out as a positive intervention although it lives in my left hip and it's now part of me...

I wish you many many well wishes...plz read and talk to us with any questions you may have as we all understand what you are feeling, both physically and mentally... I will keep you in my prayers...

Hugz, Kathy:grouphug:

I have had a total of 4 blocks, and only one gave me relief. But the relief only lasted until late afternoon the following day. I am going in for another block this Tuesday, only because the doctor wants to see if I have the same relief as I did at my last one. (side note: the last block was in a different area as the other three). I am also waiting to hear from a Neurologist. Don't remember why he wants me to see him. But at this point I am just desperate for someone to help with this.

Hi and Welcome to NeuroTalk. I'm so sorry you have RSD. It is an extremely painful disorder as you know. It's rated at 42 on the McGill Pan Index on a scale of 1-50. above amputation. That information comes from RSDSA. It has a lot of good information on the site. You could put your zip code and get the closest support group. Support groups are very encouraging, informative, getting information on local drs. etc.
Another website is rsdrx.com puzzles list A Dr. Hooshmand , who practiced for 40 years in Florida has his website up with 146 questions and his answers. Very good.
I've had RSD 15 years following surgery. now full body. I was sent to physical therapy and massage therapy and a Tens Units and got use of shoulder back-called frozen shoulder. WAs in remission for over a year and then moved to other shoulder. more therapy and then another remission.
An injury brought the RSD back in my life again. I did try acupuncture and couldn't handle the pain of the needles. We are all different and I've heard some have been helped. But also consider-a person can even get RSD from a blood draw (needle put in wrong) I have a blood draw with a butterfly needle
to lessen the invasive procedure. For that reason I personally stay away from acupuncture procedure.
I'm actually looking into HBOT. Water therapy has been good for me to keep mobile. Water needs to be 86 degrees. Ice or cold water is not good for us.
Having a good Dr. is imperative. A neurologist is good, since this is a neurological disorder. A psychiatrist can help us in dealing with this life altering condition. My nuerologist is also a pharmacologist, which has adjusted my meds to help me. There are several meds that help with nerve pain like anti-depressants. RSD causes high blood pressure thru the sympathetic nervous system and also low blood pressure thru the para sympathetic nervous system. It is an autonomic condition that affects the involuntary organs. Our sleep for many of us is interrupted. The Limbic part of our brain affects depression, short term memory. We can be talking and forget what we were talking about. cant think of words etc.
Please let us know how we can help.One of your new friends, loretta

HEY! itll be okay :) i promise... most of us, if not all, know how you feel and were here to support you! I remember how emotional distraught and confused i was when i was first diagnosed and how confused i was by the after math of the injury, it was absolutely terrified too... not to be dreary or upsetting but the reality of it is that chances are the pain isnt gonna go away and youre probly never gonna get used to it (such was the case with me). itll creep into other parts and itll be the biggest and most painful pest youve ever dealt with BUT that shouldnt EVER stop you :) you just have to laugh and smile and when the pain gets at its worst you just gotta lean on the person closest to you.
And unfortunately hun, people will never understand or be able to realte with the things that are happenning to you and thats okay, be glad that they dont have to, it would suck if everyone on earth was falling all over the place due to RSD pain, it would be RIDICOOOOLOUS and barely anything would get done. As a result to people not understanding theyll probly walk away and leave you but who cares?! if they leave then they werent worth your time in the first place. if they leave then it means that the person isnt strong enough to support themselves and, let alone you!
As a final note ill say something that occurred to me and it may mean nothing to you but oh well, RSD is a weird and fairly rare (numbers are increasing) disease/disability and because its so weird there arent many cures or fixes, which in all honesty REALLY SUCKS. but if i were to be diagnosed with any chronic pain syndrome thats uncureable id want it to be RSD because its so obscure and unknown... wen i tell people whats wrong with me and they go "WWHHHAAAAA?" it makes me smile. The disease sucks like no other but im as proud as i can be to have it....... now if only i could get it to go awaaayyyy............
hope this meant something! <3 it was both advice and personal venting :D

Welcome , I am a new member on this site though I had been reading it for a while . You will get plenty of good information and it helps realizing you are not alone in this fight . I had acupuncture at one point and it unfortunately put me in a flare , but that is me . The one thing I have learned is it seems we all respond differently to the different treatments , meds. , etc. and hopefully you can find your comfort zone of what works for you . I have found one of the most important things for me is confidence in my Pain Mgmt. Doc. , so hopefully you have a good one . Take care !

Hi WCD,

Welcome to NT !

Get ready to start your research ! No one thing works for all of us.....or is approved by insurance.

I tried accupuncture, but it was not covered by insurance and after investing a few grand, I quit because I was not seeing any lasting results.

I would be interested in pursuing an implantable pain pump, but my docs are not knowledgable or enthused about that option.....so far.

Hey sorry to hear you have this........it does suck, but from what I have heard the pumps do work very well, BUT they are usually a last resort. What medications do they have you on for this?? And they usually start one off taking pain meds or using pain patches before they start cutting on one to insert a pain pump or an SCS.

You really do need to research before getting a pain pump. And the rsds.org site is one of the best sites on line for RSD/CRPS.

Not being afraid is one thing that has helped me. When I first got this in '03 I was totally petrified, but alot of of my fear was due to the pain I was in. Once my PM doctor helped me get it under more control I was able to educate myself. When in horrilble pain it is so hard to just think. I have it in both feet. But education does help. It gives one all kinds of options & your doctor sounds like he is not scared to try things to help you with pain. Some doctors just won't do all that much. Especially ones that won't prescribe pain medication.

DebbyV

ps, but the way the boys in the picture with me are my grandsons & this was taken back in '06.