New lady with RSD/CRPS & Emphysema
 

Hello everyone. I hope to be able to make new friends and learn from you. I've done so much study and research about this insidious disease (RSD/CRPS), and I might be able to share useful info with all of you as well.

I'm from a state that knows nothing about this condition. I've been in 24/7 horrible pain since 2002. In the beginning of this nightmare, I went to the ER when the pain would get so bad that I thought I was going to lose what's left of my mind. My husband and I searched and searched for a doctor that could tell us what was wrong. When we could find no help, we got on our computers and read all we could. It took years. What helped us to know where to look was when a nerve conduction test was done, and the doctor said that it could possibly be RSD. I'd never heard of it. When we searched on RSD, there were all the things that had been happening to me. I was so grateful to find the info that listed so many of my symptoms, that I just sobbed and sobbed.

I go to a Physiatrist in another state (a 2-hour drive). They really just shove meds at me and no kinds of treatment. I'm looking for a doc that specializes in this and am having a tough time finding one.

This thread may go thru or not. After I registered for this site, it told me that I couldn't look at the pictures that I clicked on at the top. So I'm confused as to what I did wrong because it kept asking had I forgotten my password. I had not because it's a weird orchid term that no one could guess.

May you all have as little pain as possible today.

Warm regards,

Paphlady

Hello Paphlady and Welcome to NeuroTalk!!! You will meet many great people here who i'm sure will be more than happy to help you if they can!!

I'm so sorry to hear that you also suffer from RSD!!:hug:

Your story is pretty similar to mine and unfortunately, many others. I live in the UK (England) and not that many doctors are aware of RSD. I developed this awful condition when I was 12 years old (i'm now 14) and had to go to about 5 different hospitals before I got an accurate diagnosis. None of the doctors seemed to be willing to help find out what was wrong with me so my mum started looking on the internet. We didn't find any info about RSD though and nothing really kept coming back. When I was diagnosed with RSD, we had no clue as to what it was so had to go searching the internet for information.

Do you have a Pain Management Doctor in your area that treats RSD? They are the best doctors to treat RSD usually as they can prescribe pain medications and perform nerve blocks that may help.

Do you have Physical Therapy? It is really important that you keep moving as much as possible, even though it is extremely painful!! Exercising is probably one of the things that will help you in the long run.

If you have any questions or need any help, please dont hesitate to ask!

Take care of yourself and I hope to see you around the forum more soon!!:hug:

Alison

welcome to the forum
 

http://dl4.glitter-graphics.net/pub/...r0sb28cuvc.gif

You will make many friends on the forum. We share our thoughts and support each other in a positive manner. Sorry you have RSD...not a club that anyone wants to be a member. I am Dew, it is nice to meet you.:hug:

PaphLady,

Welcome, unfortunately.

I'm going to make you one suggestion.
Do you live near a city that has a University Hospital?
It seems that there's probably one within two hours?
Call them, visit them online.
Check out their neurologists.
(This is what you need, a Neurologist who specializes, or at least has knowledge of rsd)..
Then, a Pain Management Psychiatrist. Would be of great benefit. (I'm not saying you're crazy, but there IS a psychological element to chronic pain, and RSD).

(A Physiatrist is a first good step, up the ladder of RSD doctors. So, you're on the right road!)

And, excercise.

RSD, is "Use it or Lose it".

Unfortunately, modern medicine is sometimes the only treatment available. But, you need someone with REAL knowledge of the nervous system and brain, to deal with RSD, and that's a Good Neurologist!

You don't say what State you live in, or where your RSD is located. (Maybe someone here knows a doctor?)

Has it spread?

Pete
Asb

Hello Paphlady,

Welcome, to the site sorry you have a need to be here. There are a lot of good people on here that have some good advise. You can share with us as we share with you.

I agree with Pete (Aintsobad). You need to find a neurologist or PM that is associated with a University Hospital. They seem to be more update on RSD. Most doctors that specialize in RSD are associated with a teaching hospital. My phsycologist is great he helps me sort through all the treatment options, medications and he helps me understand how my doctors are thinking.

It's nice to have you on the forum.
Take care,
Sherrie

Welcome Paphlady,
Sounds like you and your husband have been thru so much frustration. So few Drs. even know about RSD let alone know how to go about diagnosing it. It was four years for me and one wrong diagnosis.I flew to an orthopedic group and got a diagnosis in 1 minute followed up by studies to confirm.
I agree with others in needing a neurologist. I actually have had a neurologist the last 5 years that is also a psychiatrist and pharmacologist, which is ideal for not only his experience with rsd in his past patients , but being my pain management Dr. and helping me emotionally when I was diagnosed full body and another neurologist suggesting I see a Psychiatrist to help me deel with this life altering horrendous disorder. I have had this 13 years and what has helped me the most is physical therapy, massage therapy, and swimming, water therapy. It has kept me mobile and being able to use 5 parts of my body, both feet, both shoulders and arms and one hand, which is half crippled. You can go on the RSDSA site and give your zip code and get a support group closest to your zip code. They'll give you a name and phone number and meeting time of the group. From there, you possible could get names of Drs. the group knows from experience in treating RSD.
We are happy again you found us, but happy to have a need. We all have found so much comfort from others and receive encouragement when we can say something that is helpful to someone else suffering.
Keep in touch, and again welcome, loretta

hello and welcome Paphlady glad that you found us.
i am sorry that you also have this horrid disease.. mayone one of us lives near you. and can help you find a good doctor.. like pete said sometimes the university hospitals are a good start. i have had RSD for 11 yrs now and have it full body and internal.

i am so sorry that no one has been able to treat you i know how that is. i was young when i got rsd and that in it self was a challenge.. jump into the conversations any time. about the pics i dont know why you cant look at them but i know for the first couple post that you cant post pictures yet.

talk soon
carrie

Welcome to the forum!

Hi. Welcome and I am sorry. I agree with others that I hope you can get into a pain managment and neurologist. I know how frustrating it is to find a doc who deals with rsd. I have been out of state for many as well. May I ask where you live and possibly someone could chime in with some ideas. Did the physciatrist do the emg? How did this happen or do you not know? This is a very warm and educated community and I hope you find it helpful. Hang in there