I am getting concerned..along with my Doctor's. They are seeing VERy rapid progression with me and it's getting kinda scary. THe Doctors believe I've had RSD for about 2 years now but things are changing for the worse now and very fast. The burning pain never stops and it has spread. I have full body RSD and I have trouble with internal organs now as well. They are really concerned and quite interested in me because everything has now been affected by this terrible disease. The burning pain is getting worse by the week and I have more trouble sleeping and eating which keeps getting worse. My memory and concentration is just awful and my vision keeps changing. My vision has changed now 4 times in less than a year! I am losing sight in my right eye and the eye lid is swollen and looks droopy. My vision is blurry most of the time and glasses are pretty much worthless. I see the same with or without them.

What's getting really scary now is that I'm losing function of my right hand. It's swollen most of the time and I can't even close my hand to make a fist. I can't pick up an empty soda can with it most of the time. I am now having trouble walking, especially when I'm in a huge flare. I have awful spasms, legs feel weak and my knees will just give out on me at times. I have a hard time getting up steps. I'm falling apart and I'm scared.

I'm just curious if any others progressed rapidly and were you able to slow it down? I tried a bath last night to help relax and then I didn't sleep all night. UGG!

Is there any relief?

Hello,

Take some really deep breaths and release the air slowly do this several times. It helps me relax even at night when I am having trouble sleeping. There is relief and your anxiety is normal. I have had RSD for 9 years the last 7 have been fullbody with lungs and heart involved. Mine spread quickly and it was very scary at first.

I love the pool. The cool water puts the burning out and the exercise is good for me. I water walk my lungs don't function like they should so I can't put my face in the water to swim. I then get in the warm pool at the Y and take an arthritis class this keep the joints working. I went to Dr. Schwartsman in Philly (an RSD specialist) he said the pool excercise is a must and he also agreed that my chiropractor (he an activator doctor he doesnt use his hands) is the best thing I can do for myself. All our nerves run through the spine keeping is aligned keeps the nervous system working better.
When the nerves in my mouth are flaired I drink room temperature liquids and eat yogurt. Ice cream is too cold for me and yogurt helps put the fire out.
I take Ativan for anxiety .5 mg twice a day this really helps. Anxiety is an agrivator for us RSD'ers

Now for the best thing is my treatment plan. I PRAY prayer has saved me from myself. The Bible tells of a a peace that passes all understanding. God will cover you with it when I finally gave my worries and doubts to him he lead me to the doctors who help treat me. I may never ever go into remission but I can manage my quality of life so much better because of him. If you are not a christian please contact someone you know that is or visit a church in your neighborhood. If you are a christian and have moved away from God's will for your life he never changes and is only a prayer away.
Take care,
Sherrie

Hi Im full body too I think it went to a new limb every three to 4 months and then to the pelvis , stomach and face. My ears are horribly affected. i have one spot onthe right side of my face that is not affected.
I agree with Sherrie's plan, swim and pray. a pool at the correct temperature 93 degreess can do so much in terms of relief. being weight less is wonderful.
The depression is still huge. I want to live alone. every action is a struggle- i have a husband who loves me and has stayed by my side through it all coma etc but I still want to live alone. Why because going through the motions of trying to be somewhat normal, socialable etc causes so much pain. I am jsut so tired of it all. Sorry I couldnt offer more cheer. I just keep praying and remembering to be thank ful. take care,cz

I agree whole heartly with sherrie and cz. Swimming has really pushed mine back,,i cant swim,but i put floatys on and aqua jog,,God has Blessed my theropy, Pray,,Pray Pray,,,He will heal you,,stay calm,,when i spaz out,,i get terrible flares,,,,your in our prayers,,,,,,,scripture say,,,"Draw closer to God and he God will draw closer to you" ,,he ia a mercifull God,,,and in John14:13-14 Jesus says ask me for anything and i will do it,,and in james 5 jesus says is anyone need healing,,he should pray,,,,,,,,God is your friend ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,bobbe r

Hi momzpeachy,
I am so very sorry you have full body. I remember how scared I was when I was diagnosed full body. My neurologist suggested I see a psychiatrist. I knew I needed help to adjust and cope with this overwhelming feeling. RSD already is difficult because of what it does to our memory, grasping for words while talking, difficulty in making judgment decisions.I didn't like the 2 names I was given, so I found the most amazing psychiatrist in the yellow pages. He also was a neurologist, & pharmacologist from New York and studied at Cornell. I made an appointment and immediately knew this was the man I could trust,and respect. I have been seeing him once a month for 5 years. My husband and daughter have also been with me once.
I've had RSD for 14 years-it's been full body 8 years. I have one crippled hand, but thru therapy, it went from frozen solid to being able to bend the fingers partially, which I am so grateful for. At one time, my feet started to curl up off the floor. My Dr. had me get in the pool dailey and swim and exercise my toes. After 4 months, I had full use of my toes and they were touching the floor again. I've had two totally frozen shoulders, and thru about 150 physical therapy sessions, got full use back. I also on my own, did 150 massage therapy. Massage therapy, helped me get the use of my arms back faster. I still believe in massage therapy and stretching. Swimming is the best exercise and keeping us mobile. The water needs to be 86 degrees or warmer. The YMCA is a low cost way to get your exercise. The pool has literally kept me mobile and out of a wheel chair. I'm 61 and am so grateful for the direction from my Dr. and family. We live in Arizona.
My Dr. manages my pain and RSD. There is a strong connection between pain level and lack of restorative sleep, and pain level and anxiety. So he put me on lorazepam 2 mg. 3xday. Pain med is Vicodin 5/500 I take 2 tablets at a time 3 x a day. Cymbalta 120 mg. is an anti-depressant that works well on nerve pain. I'm on 2 high blood pressure meds double dosed. Sleeping pill was ambien cr 12.5 mg. I was on neurotin 3200 mg for several years. I had violent electrical jolts, jerks, spasms. Changed that to Lyrica 400 mg. But I gained 60 lbs. (had always been thin) I felt the weight gain contributed to high blood pressure) So my Dr. let me go off gradually and I lost 30 lbs right away. Was able to lower one of my blood pressure meds. I felt clearer in the head. In the last 7 months I've only had a couple light jolts. I'm working on the 2nd 30 lbs. and still feel I'll be able to lower blood pressure med.
For weeks and weeks my Ambien was useless. Wouldn't get to sleep till 5-6 a.m. and sleep till noon-1pm. Life was just passing me by. My Dr. was doing a study for a pharmaceutical company on seroquel. On higher doses, it's used for bi-polar disorder and schizophrenia. The study of 200 patients was for a low lose for fibromyalgia, which I have. So he switched me to seroquel 300 mg. I was to go to bed for 3 days. It felt strong. But I slept 9-10 hours. Took it at 7pm and slept from 10-11pm to 8 .a.m. Felt wonderful to get that restorative sleep. He lowered my lorazepam from 6 2mg. a day to 3 1mg. or cut in half and sometimes I only take 2 a day. He left the vicodin up to me. I was on 6 5/500 pills a day. I took 2 at a time 3x day. And I went down to2-3 pills a day. Because of the restorative sleep, my pain level is way down and my anxiety is down too. It's amazing.
I've got the flu right now so am in a flare. 102 fevor etc so I'm back on full
dose meds.
If you don't have a YMCA pool, some local resorts may allow swimming for a small fee or even free. Sometimes Easter Seals have pools. Also the city recreation has pools and classes you can sign up for, It is such good exercise and a way to connect with people.
I got RSD the day following breast surgery. My arm swelled up at least double it size. couldn't move my arm or bend it. It became frozen. My surgeon went on vacation and his partner withdrew excess liquid, which was lime green (meant infection) but of course no one mentioned that. Sent me off to a rehab Dr. for overseeing physical therapy. Took 100 treatments, and I went to massage therapist just before the torture of pt. Even the massage therapy was torture ( which I paid for) I took pain med and then they would strap me down. But I got the use of my arm back. We then were getting ready to move to Arizona for our daughters college. The pt told me not to be surprised if the other shoulder froze up. That sounded strange to me. After a year in AZ, guess what, my other shoulder froze up. More pt and massage therapy. cortisone shots. Got most of my arm back. Then another year of remission, still no diagnoses. Was water skiing and felt a pull in left hand. RSD used to be called hand shoulder syndrome. I was diagnosed rheumatoid arthritis, that didn't make sense as my tests were good. So I flew back to Oregon to a sports injury group. The hand specialist looked at me and said I think RSD-had tests at hospital and it was confirmed. Came back to Arizona with a Tens Unit and more therapy. Because of the delay, my left hand is like a claw, only partially usable. But I'm very grateful, can cut my own food.
Physicall Therapy is extremely important to keep joints moving and from freezing up. Sports Injury Doctors in my Opinion are great.Eugene, Or has the University of Oregon there so a great group of Drs. Scottsdale AZ has Diamond Back Baseball Team. That's who I went to to oversee my right shoulder and I had the physical therapist who had just come off the pga tour and started his own therapy business work on my right shoulder.
We have two mayo clinics here and the ketamine study was done here with Dr. Swarztman, Dr. Harbut, Dr. Correll and others.
My Dr. just finished building two clinics and each of them has a hbot in them. When we get on our feet financially, I'm going to try the hbot. Hope to take several sessions and then weekly maintenance.It's just 5 minutes from our home.
SLEEP IMPERATIVE, CALMNESS-Anti-Anxiety MED< Bio-Feedback helps with calmness, Meditation, soft music, essense, candles Whatever we can do to make our own endorphins work, exercise, stretching, swimming, being around positive, calm family and friends. It's not easy, was the days in which we live are hectic, stressful, confusion, etc. But as far as it depends on us, be peaceful and try and surround ourselves with calmness.
How are you affected internally? What are your symptoms for internal RSD. I believe I have internal issues.
I'll be thinking of you and hope you get the help you despartely need.
Take care, loretta soft hugs

well i only had my rsd for 2 months now im in the late stage of rsd my calf muscle is gone both my knees are very weak my hip is weaker because i had a bad fall that does not make things better its hard for me to walk around with my crutches i have rsd in my left foot i had 3 surgeries i had spasms riight after surgery it was so bad they had 2 put me in the hospital now my calf muscle waisted away so i cant feel the spasm in my leg any more but my big toe gets spasm still i feel like im cripple im 37 and i feel as if im 75 i cant leave the house without help my kids have to go with me every where i go i feel like i am a small child this rsd has me as a prisoner and i want to be free this

Mary
im so sorry to hear,, Pray exercise and pray,, swimming is great,,,my condition went into over drive when i had a hip replacement 4/13 this year....we all have to pray,,and stay active and stay calm[easier said than done]],,my prayers go up for all of you,,,,bobber

My rsd spread to all 4 limbs and hips in 11 months and within the next year went full body. I've had rsd for 6 1/2 years now. If you've had rsd for over two years without much or any change in things then I'd label you a slow spreader. lol ;-) All of our bodies work differently, but once things begin to change, sometimes they can snowball quite quickly. Sorry you're having to deal with so much at once. Hang in there, we're here for you.

Big Hugs,

Karen