[suz66]

Hi all: I have been reading alot of posts on RSD and have seen several of people with RSD over years and have developed full body or just expanded RSD. Does RSD always spread over time and/or can it be prevented from what you have experienced? I have only had it for 10-11 months and beginning to be concerned and even more cautious than I was before. Whatever experience you can share would be appreciated. Thnx. Suz

[amb97]

Hi. So sorry you have been diagnosed with this, but I want to try to reassure you a little. I developed RSD in my right ankle after surgery following a car accident 3 1/2 years ago. I didn't know I had it for 16 months. I went into full remission while I was pregnant with my 5th child (apparently this is very common), so I thought my injury had healed. Then, about 6 weeks after I had my baby, the pain returned and started to get worse. Long story short, I finally forund a pain management doctor who figured out what is wrong with me. I had two Sympathetic nerve blocks two weeks apart, and the results were used to reach my diagnosis. untfortunately, after the second block, the RSD spread up my right leg, into my knee, and also into a spot on my lower spine (another pm doc told me this is because the nerves that control my ankle are touching the ones in that spot on my spine, so it was an easy jump). HOWEVER, my last nerve block was in November 2007. Since then, I have had NO more spread. My doctor says because I have gone this long, there is a better chance that it will NOT spread anymore than the chance that it will. I am on Neurontin, Ultram, Hydrocodone 10/325, and Cymbalta. I still have way too much breakthrough pain, so it's tough, but at least I don't have it all over my body. It can happen, but there is hope that it won't for you. Stay in touch with your doctor and do what needs to be done to controol your pain, but don't stop living you life becasue you fear injury. With 5 kids, I get lots of injuries, but I try to be as careful as I can and just hope things keep going on the way they are. You can never say anything ALWAYS happens with your body because everyone is different. Hang in there, and have hope. I wish you the best.

[fewdalord]

A recent article by swarztman(sp) I think says that most of spreading, if it occurs, occurs in first year. I think some people on here have had different experiences. The article can be found at rsdrx.com I think or here in this board.

[fewdalord]

The article may have referred to symptoms etc during the first year and not spreading. Sorry, someone will correct me tho.

[daniella]

Hi. I think it really depends on the person and getting proper and quick pain control treatment. Though my rsd has spread I am able to do so much more then when it began and have way less crying from pain days. There was a time I could of never done what I do now. I can laugh sometimes and am out of the bed full days where as the first months of this I was crying from pain and barely could walk. I do get frustrated when other areas have been hit and still at the pain level/limitations but I am trying to remain hopeful in continued progress even if it is slow but I am hoping for faster now. Don't give up and try to stay in the day. As my pain doc says do what you can do on the good days and on bad days do the best you can.

[love2laugh]

Hi....
I was diagnosed with RSD/CRPS in my abdomen & pelvis in October and in my legs in February. Please reassured that RSD/CRPS doesn't always spread ! There is nothing you can really do to stop or prevent it.

The best thing to do is try to get a diagnosis early on and begin treatment as soon as possible. I've heard that a diagnosis within 6 months of the injury gives the best chance of remission and I've seen it myself with my abdominal/pelvic RSD/CRPS.

My abdominal/pelvis was caused by surgical complications last June. Thankfully, my wonderful neurologist-- who'd been treating me primarily for epilepsy and allodynia, picked up on some of my symptoms and immediately said "rsd/cprs". It took me several months to tell him about it-- as I and my GYN thought my pain was lingering post operative pain, but after 2 sets of trigger point injections by my GYN, I decided to ask my neurologist if any nerves ran along my stomache any pelvic-- as I was having nerve pain (allodynia) and that area felt very hot. He made the diagnosis and decided to try and experimental treatment--- Botox injections (along with increasing my Neurontin-- which i also take for epilepsy). I was desperate for pain relief ( living in Japan with no car and had to walk several miles a day, sometimes with a grocery cart full of groceries, etc) It worked. Botox isn't a cure all, but it did help. I went from almost non functioning to functioning . I cried and thanked him !

My legs, were a completely different story. I developed CRPS/RSD in my legs in 2002-ish, but was only recently diagnosed. I've broken both feet and ankles twice, and the most recent break in 2005 made it spreat from my left leg and foot and a bit of my right foot, to all of my right leg as well. I ran the gamut of your pain is from "its just over use" and "its your osteopenia" (yes, I do have osteopenia, but osteopenia doesn't cause pain), "plantar fasciitis" etc etc. I had multiple sessions of Physical Therapy splints, etc with no sucesss. RSD/CRPS was mentioned several times by a civillian dr, but my military dr, at the time, poo-poohed it. My neurologist in Japan (an american dr) took a look at it, had me do several experiments to see if it was vascular or neurological. Then he made the RSD/CRPS diagnosis. We increased my Elavil (i've had allodynia for years, so I've been on that for a while) to help with the burning and hot feeling.

As for pain control.... we're still tring to work on that !

My RSD/CRPS also really effects my autoimmune system. Not everyone experiences autoimmune problems though. When my RSD/CRPS in my tummy flares, it cause my pelvic and female issues to flare, and when I get sick, I really get sick.

My best advice is just to keep pushing for pain control, boost your immune system and keep active ! About the only thing I don't do any more is a lot of gymnastics. I live in a 3rd floor apartment (and have 4 flighs of stairs to climb) so I am always walking, lol. I also try to swim when I can. When I start to get sick, I get antibiotics before it gets out of control and just make sure all my drs are aware of the CRPS/RSD when I have to have surgeries or other procedure.

Hang in there !

[suz66]

Greetings all: Thanks for the replies. I have had this for 11 months now and am doing much better, but am concerned. I need to trust in the Lord and not worry so much....easier said than done at times. Tee Hee I am allergic to most oral pain meds and have been using ibuprofen for the most part. I am thankful that my episodes of pain don't last a long time, but come on fast and furious and radically. I mostly just deal; nerve blocks don't work either. I believe it is (mostly) in remission right now, but still have sensitivity to extreme hot and cold and pain from stiffness and in shoulder (cortizone has worn off). Thanks again to everyone; it helps to know that others are empathetic and compassionate to my situation. My best to all, Suz

[Abbie]

As others have said... RSD does NOT always spread... I personally know three people other than myself with RSD.... two people have never had a spread... one has had minimal spread...

Me?? Mine went body wide in about 3 months...

I wish you the best and hope that you have ZERO spreading!!


Abbie

[loretta]

Hi Suz and Welcome,
It's good you are reading a lot, The part called Introduction is real good at the top of this forum. I went into remission after a year of physical therapy for frozen shoulder. It came following breast surgery. Besides physical therapy to get range of motion back, I did massage therapy. I didn't know I had RSD for 4 years. I got full range of motin back and stabing pains went away. But my pt told me it might go to the other side. I thought that sounded odd, but I was happy I had most of range of motion back. Well, after I was well and recovered, it did move to the other shoulder. We had moved from Oregon to Arizona, so I found a physical therapist and massage therapist . Also went to a orthopedic surgeon who gave me cortizone injections. Got almost full range back again and I was in remission. (still no one had ever mentioned rsd) Had another year with no symptoms. Then was water skiing at the end of summer, and felt a pull in my left hand ,swelled up. Went to a Dr. and he diagnosed me with Rheumatoid Arthritis. Was on meds, but didn't get any better and it didn't make sense, because I didn't have the RA in my blood test. Went to Oregon to Orthopedic Group and in 1 minute the hand specialist said I had RSD. He sent me for neuclear med test and was positive for RSD. He orderd a Tens Unit (which was good) and started therapy back in Oregon. Came back to Arizona and found a neurologist, that did more RSD tests, confirmed. Saw a Orthopedic Hand Specialist and he confimed RSD and oversaw my pt next door. RSD used to be called Hand Shoulder Syndrome. My Hand was frozen straight as a board. Thru a lot of therapy, I only got half use back, thanks to the delay of the first Dr. I went to after the ski accident.Something good they did in therapy was desensitization. They run your hand thru different textures. I did it at home 7 days a week also. You take maybe 7 pastic bowls and fill them with different things. Like cotton balls, rice, sand, beans, popcorn, You run your hands, feet thru the different textures and you get de-sensitized. I also did stretching at home. When I began p.t. in Oregon they gave me a cylinder about8-10 inches in diameter and about 5 ft long made of styrofoam. You lay on it with your arms stretched out and roll back and forth. It stretches out your muscles,nerves in back. Helps keep your range of motion. My opinion is physical therapy and massage therapy are huge in the recovery of RSD. But not overdue. Another is swimming. The water needs to be 86 degrees or warmer. There are public pools, ymca, health clubs, I have a heated pool in back yard, and it has literally kept mobile. My toes started to curl up off the floor and my Dr. I've had for the last 5 years had me start right away with therapy in pool and curling my toes. I also did it in the bath tub first thing in morning. After a few months, my toes touched the ground again.
I have full body RSD. After the water skiing thing, it also went to the other hand, then down to one foot and then the other foot up the legs. I have a lot of skin rashes and have had a couple of lesions.
In my opinion, it imperative to keep calm- not anxious. My Dr. has me on a low dose anti=anxiety med -lorazepam I do get flares, when sick, sinus infection, extra stress. I personally feel couseling is good. My Dr. the past 5 years is also my PM Dr. He is a Psychiatrist, Neurologist, and Pharmacologist. I also take a lot of vitamins, and eat really healthy. Basically, am a vegetarian. Was on 3200 mg. of Neurotin to stop the jerks, electric shocks, spasms, etc. but gained weight, so asked my Dr. if I could gradually go off if my symptoms didn't come back. So I've lost 30 lbs. and have 30 more to go. I've only had a couple mild episodes.
To answer another question you had, Bio-feedback is a great too be in touch with your body symptoms and relax. A lot of hospitals have classes. I also use aromotherapy, scented candles, happy music, journaling is a wonderful emotional release. Do you have a local support group. You can go to RSDSA and type your zip code it, and they give you a name and phone number of a contact person. Another site I've learned a lot from is www.rsdrx.com Dr. Hooshmand is retired now, but site is still up. Under puzzles, is about 140 questions from patients and his answers.
Visualization is good therapy, meditation, prayer. I keep in touch with good friends in Oregon, Washington, We have visitors every year. We only say yes to those we are close to and it's a wonderful time with friends, not stressful. We don't feel we have to 'entertain'. The ones that come and visit, really just want to lay around the pool and read. They cook for us-that's a switch huh. We have 4 bedrooms and 4 baths, so everyone has privacy and I don'[t get up until I feel like it.
I hope something I've said helps you. I'm going to read a motivational book by Michael J Fox called Always Looking Up It's about his trials of coming to terms with his incurable disorder. Dr. Hooshmand also has written books about RSD. He is retired now.
I wish you well, and hopefully a full remission. It DOES happen, I haven't increased in meds, in fact have decreased, and don't have spasms anymore. The depression is still there, but not as bad. I've gone from two double dosed anti-depressants to 1, Cymbalta. I'm not decreasing in pain med, vicoden from 6 a day to =4-5 Also since I'm losing weight, am decreasing high blood pressure meds. Wish you well- keep in touch, your friend, loretta

[ali12]

Hi Suz,

I'm sorry to hear that you suffer from RSD also!! I'm glad you have found this forum - you will meet many great people who i'm sure will try and help you in anyway they possibly can!!

I have RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain and it since spread to both arms after further injuries. Like you, I am always extremely scared about the possibility of it spreading and tend to be very careful.

American RSD Hope (a popular organisation dedicated to researching RSD and finding a cure) conducted a national survey not so long ago about spreading and the results have just come in.

The results said that in 75-80% of cases, RSD will spread but only 8% of all cases become systemic (full body) thankfully.

Here is a link to the article should you wish to check it out:
http://www.rsdhope.org/survey/results.asp

I know it is really hard but please try not and not panic too much. Getting stressed too much about your condition and the possibility of it spreading will only make you worse and more prone to having a spread etc (it's been proven that stress can make RSD worse and/or spread).

If you ever want to talk, please know that I am here for you because I DO understand what you are going through and how hard it is dealing with all of this!!

Take care of yourself!
Alison.