Whole Body RSD?
 

I am compelled by new pain as well as the new pain that happened to me the month before that(Feb) I told them at the pain center that I was hurting in all of my bones to the point I went and saw my primary Dr and had him x-ray my leg that I broke, for stress fracture fractures. My last MRI results came to degeneration of spine, hips ,disk disease. For the last four days my sine has been hurting in an unusual way, with the part of the spine at the neck is on fire going into my shoulders not to mention my spine being on fire occationally. I told them (at the pain center) I thought I had RSD in my bones:eek: I have Osteoporosis and osteoarthritis and I needed to find out what kind of pain will I be exspecting because of these extra ailments:confused: He then told me with all of my health issues it sounded like I have fibromyalgia along with the RSD.:yikes: So I thought I would ask about whole body RSD before my appointment this Wed. I have the causalgia type of RSD and I had a spinal cord stimulator put in this past Nov. I am afraid that the plates attatched to my spine have become another RSD event.
Share your thoughts with me,:Scratch-Head:
Very Nervous:Noooo:
tjbird

Hi,
 

I was thinking Fibro before I read down to where you mentioned it. A lot of us with RSD end up with Fibro which is all over pain. There are also triggerpoints too. There are 18 of them that go with Fibro. The lumps can be felt in the neck in the back of the arms, the knees, and the hips and but area.
You can go into a Fibro website and it wills how the 18 points.

It seems like we always get other things with RSD. Cronic Fatigue comes with Fibro most of the time too.

Ada

Ditto
 

I will second what Ada said. I also have fibro as well. We do seem to get more than our fair share. I hope you get some relief soon. Hugs:hug: Di

Hi Tjbird,

I agree with the ladies who responded before me.
RSD is different for all of us. It is without a doubt the most painful thing I have every dealt with.
I have full body from the top of my head to the tip of my toes it also effects my lungs and heart. I have learned to take life one hour to the next. I listen to my body when it says rest I rest. I decide how much I want to do something and will it be worth a possible flair up of my pain.
I had a SCS for 2 1/2 years I had many programers during that time and they couldn't get it programmed. The leads were placed to cover my arms, legs and low back. I started having a lot of additional low back pain and it was agreeded upon by all my doctors that it should come out. The wires leading from the gernator to the spine where applying too much presure on the spine. I had it removed and my low back pain is much better. I see a chiropractor 3 times a week and I have for the last 8 years. He DX my RSD when it started in my right arm.
Good luck and I hope you get relief soon!!!!!
Sherrie

SCS and RSD
 

What is SCS? Is it a spinal cord stimulator? That is what my drs. want to do....is it worth it?
Jennelle

Hello Jennelle,

Yes, it is a spinal cord stimulator. It didn't work for me but that doesn't mean it won't work for you. I have full body RSD and they couldn't get it programmed for full body stimulation. The leads where from C3 in my neck to the lumbar area of my spine. When it was on and I turned my head it would turn up the stimulation and shock me. Mine was very sensative to posture. When I sat down it would change the stimulation and it would go so low it wasn't helping. They are expensive my insurance was billed 52,000.00 and it took a year for them to settle on 32,000.00. I had it for 2 1/2 years and had it removed for less than 5,000.00.
Best of luck with your journey for relief!!!
Take care,
Sherrie

Hi tjbird,
Welcome to Neurotalk. I'm so sorry your RSD is spreading. It seems most that get RSD has some spread. I have it full body now and also internally. Also agree with everyone above. Have fibro too. Yes the SCS is a spinal cord stimulaor. I would just say really check it out. I've read many negative accounts of ones getting worse with procedure. A some have been helped. I just attended the national RSD annual meeting. It as here in Scottsdale, AZ. Was so interesting. About 135 of us attended and then the next day was for medical personnel. There will be aDVD by the RSDSA association a little later. They say about 50,000 people every year get RSD. Education for diagnosis and just getting the name and symptoms out there is so important. It's a devasting disorder , as you know. It is a 47 on the mcGill Pain Scale. The most painful chronic pain disorder.
Keeping mobile is one of the most important things to me, so I keep moving as much as possible. Have a wonderful pain Dr. that is a neurologist, psychiatrist, and pharmacologist. I'm excited he is building two new clinics here with HBOT treatments. I'm anxious to try it. Others have had good success with this form of treatment.
I've been on here for a long time, but lost my password and somehow my posts got started over. I'm getting afull body bone scan next week. This does cause the bones to deteriorate. I had a neuclear med test on my hand when I was diagnosed 4 years after I got RSD following surgery. Physical therapy was h----, but I got full range of motion to both shoulders and partial to my hand. My therapy started real soon after the surgery and frozen shoulder. I've had probably 200 between the 3 areas. And more massage therapy than that. Swimming has keep my feet mobile and from turning and putting me in a wheelchair. Dr. was on the ball. Also, I attribute all of that to getting desensitized, as hard as that was. Most cities have pools like at the y etc. It's supposed to be 86 degrees or warmer.I even use the bath tub to do exercises on hands and feet. I use our pool in the summer, too expensive in winter to heat. We had company for a week from the west coast and we heated it for a week, the heating bill was $400! But we always do that for our company, they appreciate the break from snow and rain and we are close like family. It was a wonderful visit. We grew up next door together, lived together after high school and married best friends, our daughters are 3 weeks apart and real close too.
We moved from the west coast to AZ. for our daughters college and ended up permanent move. I found out after we moved, I had RSD.
You'll find a lot of support here. When I get to feeling a little bit better, I'll most some notes from the conerence on here that were very encouraging. Take care, loretta

( not to hyjack...but loretta, I pm'ed you about your name and post count. :))

I agree with Loretta on the keep moving and get in the pool at your local Y. I take an arthritis plus class. When you are in the water you are weightless and there is very little pain while you are moving. Water walking and the arthritis class along with my chiropractor are essential to helping me keep my pain under control. I started with PT in the water and I still do what I learned it's just on my own.
Take care,
Sherrie

I am going to add my two cents here as well. Do your research on the SCS, very well. I will have full body CRPS this July for 20 years. The very best piece of advise, my doctor gave me was "keep moving, no matter what". No marathons, pace yourself and water therapy as suggest earlier, is great.
SBOWLING and Loretta, I believe, hit the mark with their advice. I wish you all the best Jenelle!
Loretta, great to see you back. Di

What is the difference between fibromyalgia and full body RSD?

hi tjbird

ok i have both full body rsd and fibro. and the difference that i feel with the rsd is that pure burning feeling and electical feeling and the color changes .. with the fibro its like pure bone pain in the neck back legs arms. i also get the swollen lymphnodes with it in the breast area and neck ... sometimes its hard to distinguish from the two... i would get it check out just to make sure.

are you have thing color change all over.. the only place that just stays mostly red is my face adn i have more numbness then burning most times..


yes like everyone else said i would look at everything that you can about SCS before ever having it placed.. i know that having full body is hard to treat with anything like that even my pump does cover it all just the arms and legs and that is it.. please take to for these things as it can always make your worse

hope that this helped


carrie

I'm glade to get some feedback on the full body RSD as I don't believe my Pain Dr believe this. I went yesterday and I had to discribe my pain that the stimulator does not cover, well I have been telling them for months my pain is spreadding and I either have RSD in my spine (since I have plates for the stimulator) or as my primary Dr. said with everything that I have going on, it sounds to him like fibromyalgia. Now here isa the part I need help with trying to judge reality from how I felt about this statement "you know we don't treat fibermyalgia with opiods we do however treat osteoarthritis with them" Then they said that the stimulater is for the RSD, which I feel since my last adjustment, it is working very well. Now my thought pattern was offended with the sugestion that I want more opiods, do you think I am takening this out of context? I had already done my reasearch on the fibromyalgia and what types of medications are used with FMS and I am already on two of them. I would love to get of my long lasting medicine but if I am in this much pain, with this dose of meds my fear is I will be in double pain.
Anyway I trust your input on whether I should feel insulted to the point that I want more opiods.
Need to let it go. Please Help!
tjbird

Given the current studies on Fibro....
Fibro is a central pain disorder. It occurs in the brain.
The new thoughts are that pain signals are amplified genetically in fibro patients. Like a radio turned up in volume that cannot be tuned down.

Fibro may be triggered by a peripheral event. This can be an injury, vaccine, arthritis etc.

New studies have found 8 times the incidence of fibro in relatives, suggesting a genetic weakness. Fibro does not cause swelling, discoloration, etc that is found in RSD patients.

But RSD may be a trigger for fibro in certain people.
At this time RSD is considered a neuropathic condition...a defect in the nervous system that affects the circulation to the affected area/site. So one person may have both. But some people may only have the RSD.

I am planning on attending a huge medical conference on chronic pain in late May. It is going to have a Fibro section. I went 2 yrs ago and it was amazingly informative!

AngelRSD,
Ok now I can tell what is what, I have been telling my pain dr for MONTHS that my bones hert like a toothache. The other bay my spine got this burning pain that went up to my neck and radiates down my arms. My RSD is in my right leg starting at the knee and into the foot. My left foot has got it and it is traveling up to the knee. This is a different type of hurt than in my spine and when High Pressure comes I hurt terribly all over the toothache type. I also have osteoarthritis in my spine and hips. As far as the SCS it helps unless my bones are hurting and then I can't use it because it makes that worse. Thank you sooo much in telling me the type of pain occurs in each. All of the posts have been helpful and my pain dr's are trying to come up with a new plan of action by working with my primary dr.'s results of my bone scan I had recently. Communication at last!
You have a wonderful, low pain Easter:)
tjbird

mrsD,
That sounds facinating and I will be looking forward to you filling us in. You all are a wealth of information.:)
Thank You!
tjbird