Hi Lisa again, they told me it might move to other shoulder , I thought that sounds strange, I didn't have surgery there. Sure enough, a few months later after we moved to AZ, the right shoulder froze up.more therapy. Then while water skiing at Bartlett Lake, I felt a pull in my left hand, then started swelling. PAINFUL Dr. said RH arthritis. Didn't make sense, tests said no. Flew to Oregon, diagnosed by an hand ortho with RSD within one minute.

Hi again Lisa, I know it is hard to be honest with friends and family, they love us so much and can't stand to see our lives change and to be in pain and not be able to do what we used to do and love. I know I'm careful with my 29 year old daughter and my husband. They have both researched RSD on the net, so they know it's bad. They also both went with me to my Dr. of the past 4 years. But I feel caring for myself, means being discreetly honest.
I do have friends I can say anything to, two of them have RSD too. full body from a car wreck.My Dr. is a pschiatrist, neurologist and pharmacologist.
of course I can cry and say anything.
Lisa, do you go to any of the RSD support meetings at St. Joseph's hospital? They are once a month on a Saturday. It would be nice to meet you in person, family members are welcome, I brought my son in laws mother.
I don't drive a lot anymore, but still can.
Don't give up. and take care, Loretta Jewell

Hi everyone I'm Tiffany a 26 year old stay at home mom. My boyfriend was diagnosed with RSD back in May..We have two children a 9 month old and a 3.5 year old. I am very glad to find this forum. Geoff got in a motorcycle accident in March and broke his foot and it turned into RSD which is preventing him from walking without crutches. He goes to physical therapy 4 times a week went through months of epidural injections and now has (sorry i don't know all the terminology involved) but he has the thing implanted in his spine and an internal battery. Well he had the internal battery implanted above his butt and becuase he is so skinny it was literally ripping out so he just had it removed and they now put the battery in his stomach. Luckily he was working when the accident occured so he is on worker's comp. He is on so many medications it is crazy and he is such a different person...I am glad to find this board to learn more about this condition and maybe find someone like me that is having to care for a loved one with RSD. Times are tough here because we are living on worker's comp and I can't work because he isn't able to take proper care of the children. We have applied for disability once and already been denied. We are in the process of reapplying...

Hi Tiffany and Welcome,
I'm so sorry what you are going thru. RSD is a unbelievably difficult condition for both the person having it and the family. Hopefully, getting diagnosed early and getting treated, it won't spread. The medications totally change a person, I am that person in our family and my husband has had many adjustments because of it.
The medication probably is pain meds, anti=seizure meds,maybe neurotin or lyrica, make you very tired, very! Also with me I gained weight, as I was so active in sports before and worked out. I've had it 12 years now and full body. Depression is a big part of RSD as it affects the Limbic part of the brain which controls that part of us, as well as decision making. I also take two different blood pressure meds- didn't have bp issues before rsd. What helps a lot for me in an anti-anxiety med. called Lorazepam and a sleeping pill. Sleeping or lack of it is an issue with most of us. Short term memory or lack therof is an issue for most of us. I sometimes grope for works in speaking, and a little slow in my thoughts. It truly is a life altering event.
I got counseling to cope with that fact and deal with chronic pain. My phychiatrist is also my pain management Dr. He is a neurologist and pharmacologist, experienced in rsd.
My husband and married daughter with me to the Dr. to ask questions and both have read on the rsd sites. My daughter is a court reporter and has done medical malpractice depostions for a rsd lady. It's very hard on her. she is 29.
I'd encourage you to read as much as you can on this forum.
I don't qualify for ssd but have group insurance thru our business we own. Personally, I was going to use an experienced attorney if I qualified. RSD is recognized as qualifing for disability. I know I will never work again, as many on this forum. Keep trying and get an attorney if they don't cooperate. When you get it, they go back to your application date for back $ and attorney takes whatever he charges out of that.
If there is a support group in your town, it would be good to get in touch with them and attend. They can provide references and a lot of support emotionally. Usually, the meetings are at a hospital conference room. You can look up RSD. org and punch in your zip code and they give you the closest one to you. Sometimes, just calling the hospital and asking for list of support groups. If not RSD, maybe even a 'chronic pain' group or Rheumatoid arthritis group.
There is a very nice lady whose fiance has rsd, is here, but just can't remember her name right name.
There are things that I have learned for pain distraction. Listening to music, reading, being involved on this site, petting my cat, keeping in touch with friends both here and former state, by phone, or letter. scented candles. funny movies. trying to keep a positive attitude.
Thank you for the picture of your family! I love kids and being a mom. Our family traveled a lot, water skiied, snow skiied, played tennis, worked out , 10k runs. swimming. Swimming is one of things that has really helped me the most to keep walking and mobile.
My toes started curling, and my Dr. gave me exercises to do in the water and got them back on the floor!
Physical therapy is really painful, I went thru three different events. My RSD came the day following breast surgery, swollen left arm, then frozen shoulder. that fixed after over a year with a few months reprieve, then moved over to right shoulder, more therapy, then pulled a nerve while water skiing. Was diagnosed with Rheumatoid Arthritis, WRONG. Changed Drs. and had RSD since the surgery. 4 years late diagnosis.
Did Geoff have blocks? Is that what you meant by injections. that and pt. are your best hope for remission, and that does happen! it really does. After my therapy and getting the use of my arm back, I was back to tennis, everything, till it hit again the other side. then had several months pain free, till the water skiing thing. Since then, it's been down hill.
You will find lot of very kind supportive understanding friends here, on both sides. It's wonderful you are reaching out to others, You'll better be able to understand what Geoff is going thru and receive the encouragement you need as a caretaker. I am so very sorry your family is going thru this. We had never even heard of RSD, as obviously half the drs. in this country haven't either. But unfortunately it is becoming more and more common. Please, reach out anytime and you will have a lot of support. Take care, Loretta

My name is Samantha. I have had RSDS for eight months now. I was given RSDS by my doctor when he attempted to give me a "temporary cure" for my Endometriosis by administering an injection of Depo-provera to stop my monthly flow. My doctor then attempted to tell me that the pain that i started feeling that day had 'nothing to do with the injection that was received at this office" and that it was just "minor back spasams from an underlying case of sciatica" and that all of the pain in my hip, leg, foot, and back was just "all in my head and I should stop worrying about it." When I went to an neurologist and was immediatly rushed into the emergency room due to severe pain from the doctor just touching my leg, I was then diagnosed with RSDS. I called the doctor who gave me the shot of Depo and told him that I had been diagnosed with RSDS (six months after the initial injection) and that I now had little to no hope for any type of 'true remission' of the disease due to the lack of attention and care by the medical professionals looking after my health. My doctor proceeded to say "Oh my god, I really screwed up, I am so sorry" and all i could do is laugh at him. To this point, because of his lack of care and incorrect diagnosis, I have been unable to get any type of medical coverage through the state, and up untill this point, (since march) I have been unable to work. So I am out possibly thousands of dollars in wages and have no known date of when I can return to work...so go Dr. Douchewad!!! other than that, life is peachy lol!!

Hi Samantha,
I am so sorry you have RSD. Injections IS one of the ways people get RSD. It must have hit a nerve. You can't understand the damage of a Dr. Not listening to your complaints after the procedure. The 'I'm sorry' doesn't cut it. This is potentially a disorder that is life time leaving you 'insurance' issue. You will never get private insurance with RSD in your record. Most of us are unable to work, The medical procedures and meds you'll need the rest of your life are expensive. I'm not an attorney, but I am somewhat educated in this area of law. I'll write more in a few minutes. soon, Loretta

Hi Samantha,
Hi again, My mother died at age 46 under the care of an idiot. My father sued and won the suit. That's been 35 years ago, but it was like yesterday. He lived 8 years and never remarried. We had a video deposition, because we knew she wouldn't be alive for the trial. Anyway, my daughter is a court reporter and I know she did a case of rsd against a Dr. for negligence. I know we got a medical practice attorney from a bigger city 100 miles away. Local attorneys don't like to up against their golfing buddies. Insurance companies representing Drs. etc have deep pockets. Most of these go on a no cost and attorney benefits by a percentage of the award and nothing if there is none.
I didn't sue my Dr. I wasn't diagnosed for 4 years. You have two years from the 'event' causing the rsd or 2 years from when you were diagnosed in most states.
We had moved states after my surgery and physical rehab. A few months later, it moved to the other shoulder, RSD. More physical therapy. Still didn't know it was RSD. A couple years from the original surgery, I was water skiing and felt a pull in my left hand.(surgery side-left breast and arm pit.benign) Fingers swelled and so painful. Dr. said it was Rheumatoid Arthritis. Didn't sound right so flew back across country and saw a sports injury group I knew and was diagnosed in 1 minute and had neuclear tests at the hospital.
The surgeon that had ruin my life, went on vacation the day following surgery. My arm swelled up terrible and his partner withdrew fluid 3 days. Doc came back and my arm was frozen, sent me down the hall to Rehab Dr. to oversee P.T She said the Doc messed me up. I came back home and got a neurologist and hand specialist and started PT again. It was rough again. Used a Tens Unit. My hand was frozen solid-fixed fingers straight. They were able to get them to bend just part way and desensitize my hand. That is such an important part of treatment-desensitize. But at least, I can cut my food now and drive, shut my car door myself, zip my clothes, button the, and type. Then I was ok for a while, then it moved to the other hand and then both feet and legs. Saw another neurologist , joined a rsd support group. The neurologist said full body, generalized rsd. Now have the lesions, high blood pressure, heart condition. RSD is an automic disorder that effect the circulation, blood pressure, high and low, loss of memory, the limbic part of brain controls short term memory, decision making. depression. Depression is no small matter, The meds for everything makes you lose your energy level. I had spasms, electric jolts during sleep that would raise my head right off the pillow. Had jerks, involuntary movements. My toes starting curling off the floor. Dr. had me exercise in the pool, dailey and got them back down to the ground.It's in my spine,lower back, neck, face, Internal organs. I don't leave the house maybe 3-4 times a month. Can't walk long or stand long.
3 years ago I woke up and stumbled into the door and bathroom, I passed out and was out over an hour. When I woke up, couldn't get up, but beat on the wall and my husband opened the door. I lost my bladder and colon, and just said call 911. He said he heard my get up-was upstairs at his office- it was at least an hour. Paramedics came and couldn't find a pulse, I had passed out again. Told my husband I was dead. Then got a pulse and got to hospital. The blood pressure was 60/40. Was in 4 days icu and $16,000 tests-Think the bill was $30,000.
I'm tell you all this, not to just talk about myself, but to let you know the road ahead can hold so much we don't know about. I expect someday I'll be in a wheelchair. I had the flue this week and blood pressure shot up 160/109 I'm on two different blood pressure meds.
Sometimes I'm sorry I didn't file suit, I can't work, I loved my job and social life. My husband and I traveled a lot. Lots of trips as our daughter grew up. I was traveling a lot with a girlfriend, in fact, the next day from the passing out we were to go to Maui. I miss that, we went every year. My husband doesn't like to go as much as I do. My daughter and I traveled a lot in her teenage years, and then we vacationed the 3 of us.
Our economic lifestyle has changed too as result of not being able to work. There are so many losses. My Dr. now says, it started with my breast surgery 12 years ago. The following day my arm swelled up so much.
Anyway, just something to think about or talk about to those that love you. No matter what you decide to do, it's always good to make a timeline of your health conditions, or journal.
I'm going to exercise and stretch now. I gained so much weight on the meds, I'm working really hard to get it off. I'm almost up to 15 lbs.
I hope I didn't offend you or try to get in your personal affairs. Certainly not to discourage you. I just remember, when I was told, I had never even heard of RSD and not a clue what lie ahead. I can't even get disability, as we've always been self employed. Take care, Loretta

Loretta...Thank you so much for your kind words. They really helped me and my boyfriend. I understand that I am in for a long and techerous battle that is going to go uphill at a 90 degree angle. I have already started on that uphill battle as the RSD that started in my right hip has spread up to my right shoulder, and my chest as well as my right side and I think my urithra. I am not sure. But...I do know that it is very painful and sometimes I am just not willing to go on fighting, but I know that I have to. I know that if I don't...no one will fight for me. My boyfriend is very supportive and loves me very much, he takes such good care of me and he really looks out for my best interest. again...Many thanks

Hi there...

I don't know if finding this forum is good or bad. My 11 yr old son was in a freak boating mishap 6.5 weeks ago. Our boat went airborn and he was in the cuddy cabin with some buddies. He got knocked around the cabin and came down hard on a ledge hitting his spine in the middle of the shoulder bones. We heard the scream.

He was diagnosed by the family dr as having a sprain and strain since the xray was normal. The first week, he got better. AT the end of the week (was on darvocet) we let him go to a bday party. Next day he went to physical therapy and then his pain has gotten progressively worse instead of better.

2 weeks in, they gave him an MRI and the Cleveland Clinic said he probably micro fractured two vertebrae - could take up to a couple months to heal. Put him in a back brace for the pain.

Pain got worse, went from vicodin to percocets and ultrams.

After 5 weeks, went back to same doctor who said he was cured and was probalby faking the pain. But in the slim case he wasnt (he is not), it might be RSD and to see a Pediatric Nuerologist and Pediatric Pain Mgmt.

Then went to a party and talked to two friends of family who are adult nuerologists that told me that he was faking it since kids CAN NOT be in pain for more than 2 to 3 weeks - they heal to quickly. And that he was probably just addicted to the percocet.

My son is in all the gifted programs, plays ice hockey, soccer and is well liked - he is not faking!!

During this time went to the CC spine center where one doctor had no idea what was wrong and another doctor said go see your family physician. The family physician meanwhile said - oh you have the Cleve Clinic drs - go see them. Pass the potato the game is called.

Could not see a pedicatric Nuerologist so called up the ped ortho who said - well I will diagnose him with RSD so they will see him faster. So in a month, we go see the nuerologist.

His symptoms - pain that NEVER goes away - constant. Muscle spasms - very severe that causes him to scream sometimes - 4 to 10 times a day. Complains last week that it the pain is burning. We have not been able to touch his back at all in 6 weeks - extremely sensitive. But able to wear shirts and lay on his back. NO DISCOLORATION except mottling on one day last week.

So he does have a couple symptoms but def. missing some of the others. I do NOT want him to have RSD. I read your stories and others and I have no idea how you all deal with this. Had no idea it even existed till last two weeks.

I have heard that if it is found early - remission is possible - anyone know of this?
Anyone been tested for other nerve disorders it might be? I am grasping at straws since it is tearing me apart to not be able to take the pain away.

Please email me if you would like. There is so much information out there, it is tough trying to weed thru it all.

Finally, I have read a lot of the stories on this forum and they have brought me to tears but I am so surprised at the bravery you guys show every day. I hope my son does not have this - but I have found a new disorder to support since after learning about this - you can not forget it.

Happy Holidays. Crunch

I am a lawyer and a former medical school professor. I have fibromyalgia, pretty badly, so I took a lower stress job that doesn't damage my health as much. I know a little bit about living with chronic pain, and enough to know that RSD pain is far greater.

I joined Neurotalk a couple of years ago. I do not have RSD. My best friend does... I'll call her Penguin. Penguin has had RSD for 22+ years, since she was 12 years old. It started with a sports injury in her right knee, and after she had a baby 3 years ago, the RSD spread to her head, neck, torso, right and left arms, and internal organs.

Penguin needs support and understanding, so I decided to learn everything I could about RSD -- research, treatment, medicine, psychology, patient perspectives. I hope I can make her loneliness a little less.

Also, sometimes I feel lonely and scared of dealing with RSD and the 'caretaking' responsibilities. I don't want to do anything to make it worse!

The third reason I'm on Neurotalk RSD board is because Penguin no longer posts on Neurotalk because she found it overwhelming, and scary. So I read it for her and share non-scary tidbits with her.

That's my story.

Hi Everyone,
I am new to NeuroTalk. I was looking up information about clonidine patches and RSD. I am finally getting some relief from my RSD with the clonidine patch. Here is my story:
I was in an auto accident back in early 2001. A tree fell on my car from a tornado while I was driving. I do not remember what happened but after months of being treated with I don't see anything wrong (as the hand specialist in my area stated), the doctor finally examined both hands and realized my thumb was dislocated and my tendon was torn. And he was a hand specialist. After 2 surgeries, one fixing the dislocation and loose thumb and the other was fusing my thumb. The pain did not stop so my family physician sent me to Dr Ostermann, a well reknowned hand specialist from Philadelphia. He was the best. Talk about a doctor that cares, I was at his office at 11 pm and he still took 1 hour to talk to me about my care. He was supperb. He told me that my fusion did not heal properly and that it needs to be fixed or wait until it breaks. He stated that it should not have been fused in the first place. It was a mistake, a surgery that should never have happened. I was so upset, that surgery cost me my job and it was not even necessary. Anyway, he refused my thumb, which is ok now, but my RSD is horrible. Since seeing Dr. Ostermann, I have been to pain specialists, neurologists, anyone that would see me. I stopped 2 1/2 years ago. I was tired of hearing "You can't take the meds that will help so there is nothing I can do for you." I heard that so often that I just gave up. This past August, my family and I were in an auto accident where a young kid hit us head on and down the entire side of our van. I remember the entire accident as I was driving, but I don't remember what I did with my hand. I started doctoring again because it got so much worse (which I didn't think could happen) than it was. A new anestheisologist came into our area from Philadelphia that my family physician referred me too. For the first time since Dr. Ostermann, I didn't feel brushed off, I felt good. He didn't tell me there was nothing he could do. In fact, he laid out a few options on the table and said in two weeks he will have a treatment plan for me. I am now on Clonidine Patches. It has been one week and my pain is getting better. I did forget to mention that I had to nerve blocks also. They didn't help but made my neck and face so swollen that I could barely swallow. I still have the burning and the tightness, but the worst of the pain is almost gone.