I am new to RSD (reflex sympathetic dystrophy syndrome). I was diagnosed in October/2010 but have had the pain for 4 months now. I have been trying to find someone to talk to abou this disease and also doing as much research as I can myself. There is nobody in my area that has RSD, so I am trying to find someone that can help me better understand. Please Help!! Thanks, Jodie
New to RSD?
- Posted:
- 19 Nov 2010 by JoShell1984
- Topics:
- pain, reflex sympathetic dystrophy syndrome
Details:
Responses (8)
22 Nov 2010
Welcome to the group but not to RSD. You would be surprised at how many people really do have this. They say it's rare but I don't think so and haven't for at least 5yrs as I've met way too many people that do have it; mostly online.
I hope you stay in this support group and feel free to ask anything.
I've had it for 11 1/2yrs now also researching it.
I'm now looking into something called; Calmare Pain Treatment in Philadelphia, PA. I just stumbled upon this 2 days ago.
I haven't researched it enough to know if it's worth trying or not but I will continue to look at this and any other option available.
I've never had an SCS or pain pump and am on strong pain meds but sometime around the 5yr mark I was able to begin to have some more quality in life not allowing RSD to define me any longer.
I've remained on the same med/dose for over 9yrs now fearing my meds.
mlzotz26
12 Mar 2013
IV had rsd for 3 yrs now. Have been getting nerve blocks and tried and currently tryin all meds for some sorta relief. What meds would u maybe suggest?
24 Nov 2010
Jodie,
Also go to rsds.org and rsdhope.org as a couple of wonderful sites with research/news about RSD.
We do need all the info and education we can get as it's sad but true that many in the medical field have no clue what RSD is even though it's been known since the Civil War Era.
Please add me as a friend if you ever want to talk or ask anything. I'm not a doctor/nurse but I have researched this for over 10yrs after getting RSD 11 1/2yrs ago.
My own pm doctor that diagnosed me all those years ago said to me this summer that I was the most intelligent RSD patient he has ever had. Even though he did his own residency at the Mayo Clinic he told me that I taught him how to better treat people with RSD and anyone in chronic pain.
If I don't know the answer, I can find it for you and would be more than happy to.
Sincerely,
Rhonda, IN
JoShell1984
30 Nov 2010
Rhonda,
ElizaJane23
16 Feb 2011
Hi Jodie - I am sorry you have RSD. I don't have it, but I am a chronic pain sufferer and have a lot of nerve pain in my legs. I would recommend you see a pain management doctor and ask about a trial for a spinal cord stimulator. It helps a lot with nerve pain (which RSD is) and can really give you your life back. Best of all it is done with a trial, so you can see if it helps before you have it placed permanently. But whether you go with a SCS trial or not, a good idea is to see a pain management doctor who can help you know any and all treatments for your RSD. Best wishes to you - EJ
NurseJFW16 Feb 2011
Hi Jodie!
I am new to this group also but have found already that everyone is so
great and wants to help. So ask away. I have had RSD for 20 years and
I am still digging, reading, and learning about it. Go on line and read
everything you can and don't worry if you don't understand it all. Someone
suggested RSD.hope. It is a great site. Check on AskRSD. It is by a
lady - not an organization - but she has some great information - articles,
links, a list of support groups, and stuff some of the other sites don't have.
One thing I would say, when you are reading all of this information, take
it with a grain of salt - as the old saying goes. You will not have every
single S&S that they list and your pain may not progress like they say.
Everyone's RSD is different and what works great for one does not work
for another. It is a wierd disease! I live in north Louisiana - a backwards
NurseJFW
16 Feb 2011
Jodie!
I made a mistake - not unusual. I said to search AskRSD. No! It is
About RSD. Sorry. It is a good site and I wouldn't want you to miss
it because I screwed up.
NurseJFW
rollerska...27 Oct 2011
The pain stinks! I hate it! All different types of pain. I have rsd in all four extremities, parts of my back, parts of my face, my tongue, and the roof of my mouth. It is also affecting my vision and immune system. Never stop researching. You might want to check out rsdrx.com and rsdfoundation.org. watch the videos, you will learn a lot from other rsd patients. You can talk to us here on the forum. Also, find a good friend you can confide in. They may not be able to understand everything you are going through, but they can be a listening ear. I have a friend with polo (Not many living adults with that disease). She has a lot of pain issues as well. Sometimes we laugh at ourselfs. Like when I said that I wanted to take off my arms and legs and set them aside for a while so I could have a brief repreave from the pain. She also has pain in her arms and legs, so she could relate. She was also a good support when I was telling her that I felt worthless.
27 Oct 2011
Am going on my 24th year dealing with RSD & with the research I've done over the years, plus dealing with the symptoms everyday, 24/7, I'm not here to brag, but to help those who need it.
There isn't a day that goes by where I don't learn something new. As someone stated before, the disorder goes back to the Civil War era, yet many & most Dr.'s know very little about it & treating it.
I had the mistake of having a Lumbar Surgical Sympathectomy done. From what I've personally lived through, learned & read, it's the wrong to have done.
If asked any questions, I'll do my best to help, now finally having a wonderful, caring, willing to listen PCP, seems to have helped with the daily battle of RSD & the pain that goes along with it.
lheck730 Nov 2011
Jodie,
When I first contacted rsd some 12 yrs. ago, I found I couldn't take any of the so called nerve medications, no matter how hard and I tried with them all, they all just put me out in no where land, I could hardly keep myself awake, and couldn't remember anything, and none of them really go to the cruix of the pain. What really did help was to get away from as much of the stress in your life as you can, and also one big thing with me, I moved to Fl. What a relief that was for me. My Dr. suggested this for me. It caused me ot have a divorce, but then it was worth it not to burn, and I figured if my husband loved me enough, he would have just tried on a temp basis just to see if it worked. The rsd did make me do some strange things, but I learned an awful lot too. Get yourself a good Pain Managment Dr. He/She can do the world to help you. I also had a spinal nerve stimulator put in and that helped for quite a while too. Hope all this helps you.
lheck7
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The term reflex sympathetic dystrophy -and related terms, inclu CRPS Type 1- is used for everything but the kitchen sink. A doctor agreed with me on this. To be as brief as possible, conventional RSD, i.e., pain not associated with identifiable nerve injury*, is, as far as I can deduce from days of research, a general state of poor healing. Known causes include 1. excessive distraction (seen in external fixation in hand procedures), 2. hypoxia, plaster casts being too tight, circulation problems 3. infection elsewhere in the body compromising healing.
Expand this post...
Naturally, if there is known nerve damage, one might have causalgia, a.k.a. CRPS type 2. Since nerve damage also impairs connective tissue healing, one might have a complicated case of both syndromes. Very confusing. And nerves can also be damaged if starved of nutrition, i.e., poor blood supply. Indeed, the only explanation for sensitivity to touch would likely be nerve related, so the use of the term RSD for that symptom might be questioned.
There is much merit in simplifying RSD down to poor healing. It immediately explains the documented success with vitamin C, the most important vitamin for healing injuries. Knowing what you are dealing with is most of the battle. Whatever helps things heal -good circulation, vit C, zinc, a few other things, is good. There are references to ulceration. This is one manifestation I have no explanation for (and no first hand experience). Still, maybe it is not a coincidence that it bears a faint resemblance to scurvy - vitamin C deficiency? Naturally, if there is a serious underlying infection, more extreme treatment might be advisable. I saw reference to the more difficult psychological aspects of RSD. I suggest these arise from the doctors' scathing attitude. The terms RSD and causalgia cover myriad problems, and better treatment will depend on identifying the cause, something doctors are not much interested in. For instance, distraction related RSD would benefit from immobilization, but poor circulation related RSD would not.
I hope this is helpful. You will not find it anywhere else. I did a lot of reading years ago and it is also the result of reasoning and piecing together unrelated info. Jay in Canada