yep-it will crossover to any and all extremities. Not uncommon. It may never crossover but not unusual.
Wish I had a good answer for you. Stay aggressive and if things aren't working trust your instincts and tell your doc-- this thing is weird!

No pm's! I think it got lost. If you can send another I'm sure it'll go through this time.

Hugs,

Karen

Hi everyone,

I've had RSD for a few years, it started in my right shoulder after rotator cuff repair, and spread after a series of doctor snafus (RI doctors -AGHHHH) to my neck and the back of my head. I can't really use my right arm for anything other than working on the computer (THANK GOD I have a desk job). I have also had horribly cold, stiff numb hands and feet that often feel like concrete. They have been like that most of the time since the onset of winter, and I have learned to sleep with gloves and 2 pairs of socks and an electric heater to keep comfortable and warm (Ambien CR 12.5 mg helps, too!). Add facial, neck, chest, shoulder and back flushing and perhaps I getting close to being defined as full body RSD?

What is scaring me is a new symptom - a deep horrible pain in my lower right back. It started a few days ago and it's almost always there. I take 325 Percocets - 1/2 a pill at a time totaling maybe 4 full pills or so a day. They don't touch the pain in my head (when it hurts) or now the pain that has started in my back. Not sure what this is all about.

I walk a lot - maybe 3-4 miles a day, and I am still in pretty good physical shape (a lot of people who know me don't know that I am sick). I am scared to death that this new pain is a sign that the spread is now hitting the trunk of my body in the lower end, opposite where it started. And I am having difficulty sitting - not good when you have a desk job and have to drive to work every day.

Thanks as always for listening and for letting me vent, I needed to write all this down. I see my PM doc tonight. We'll see what he has to say.

Take care everyone, Sandy

HI GOODDAY, MY NAME IS KIM I HAVE HASD R.S.D. FOR 15 YEARS NOW. YOU HAVE DIFFERENT TIGGER SPOTS IT CAN GO TO.IT LIKES THE WEAK PART OF YOUR BODY. IN MY PRAYS GOD BLESS KIM

Dear Pepper,

Spreading is a very sad and horrible aspect of RSD. The amount of damage you might experience can and will surprise you. When my RSD went from the left leg to the right 4 years ago, I saw the right leg go downhill faster than the left had originally. Within 4 years, my right leg was 90% as damaged as the left was.

Will you survive it, darn right you will. Will you hate it. Darn right you will, but you will learn how to deal with it, I promise.

RSD can be the worse thing to ever happen in our lives, or it can be the single greatest thing that's helped direct our lives in more productive and positive ways. We're the ones who decide.

Before I had RSD, I actually thought my legs were the only part of my body that was halfway decent looking. Now look at what I've got. Maybe I needed to be reminded that looks didn't matter. Now I don't have two black legs, only one due to my above the knee amputation this past January. The doctors said they want to take the right one off too, but I'm hanging on because I (you and me and all the rest of us) understand RSD better than anyone else, and I'm betting that with less physcial stress due to the left leg being taken, the right will hang on longer.

Good luck, and remember that the beauty in the day is what we find in it, and if I'm betting right, I'll bet you still have all sorts of beauty around you, and now you're even smart enough to really know it. I know I am. Bob.

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Pepper,

I have full body RSD. If effects all my limbs, face, scalp, back of my head, stomach, chest, inside my mouth,tounge, heart, and lungs. However, it is different for everyone. Western Medicine knows a lot about the human body however no two people have the same nervous system. This is what makes it so hard for a cure to be found. I know somedays it hard but you need to keep moving. I find going to the YMCA and walking in the cool water helps. The cool water puts the burning out and the water allows you to exercise without putting weight on the effected limbs. You are weightless in the water so you don't feel the pain.
Talk to your doctor about your medications and how they make you feel. Be an active participant in your health care.

Good luck,
Sbowling

Hey everyone,
I am back sorry it took so long. I have been talking to my attorneys and doctors. I have started with rsd in my left hand from a severe twist at work. It took the docs 3 years to diagnose rsd and when I come back with permanent restrictions I lost my job so I am still fighting after all this time. My legs started to bother about 7 months ago and it was just the lower legs and my feet. I finally got tired of my authorized doc jacking me around like it is not possible for it to be rsd I decided to go to my family doc to see if he could help me. He did blood tests and those came back normal and I had an EMG done on both legs and SURPRISE that came back normal as well. That is what happened when my left arm started to give me trouble so it is no surprise to me. I had already had x-rays done by my ortho doc and he said structurally everything is fine,but I have a lot of weakness in my legs. He feels that my right arm and hand is rsd especially since it has the same symptoms as my left. He also said that he feels that there is something neurological going on in my legs and feet. The last thing my family doc said was and I quote "It must be the disease progressing, whatever that may be." He told me he wanted me on a cane or a walker for stability since I had fallen twice in one month due to my legs getting weak and coming out from underneath me. The last thing that they can do is send me to a neurologist, but I am trying to get my attorney to give me the name of a neuro doc so I can try and get my authorized doc to refer me so MAYBE work comp will have to pay for it depending on the diagnosis if I can get one. I already owe $1012 for the EMG since I can't get insurance, but I need to know what is going on. With the comment my family doc made I feel that he knows it is rsd but he just doesn't want to commit to it cause he knows that I have a work comp lawsuit right now. I just want to know for positive what it is and know what to expect from this point so I can TRY and move on with my life. If I can't get my attorney to call me soon I might just have to go on my own no matter what the price so I can find out what the neuro thinks. I know what I think, but I need a diagnosis so I can move on. Do you all think I am crazy?

Hey Screwballpookie,

I have full body RSD/CRPS from the top of my head to the tip of my toes it interfers with nerves that help the my heart, lungs, mouth and throat. One thing that triggers flair ups is stress. I don't think your crazy. You have a chronic pain condition add in workers comp., lawyers and doctors at times the circumstances can make you feel crazy. Your dealing with a lot and I'm sure you feel alone and overwhelmed while you are trying to sort out information.
I have found that exercise and laughing help to keep my stress levels down. I have to exercise in the water. It doesn't hurt as bad, because, we are weightless in the water. I water walk the temperature of the water keeps my skin from feeling like it's on fire. I read and watch just enough serious stuff to keep me informed on current events. Then I make sure to read and watch only funny things so I can get a good laugh (laughing is better for the body than any pill in a bottle). Every morning I ask God for the energy and strength to make it through the day and every night I ask for his peace that passes all understanding so I can sleep at night he has never let me down.

Crazy no stressed and discouraged would be my guess.

Take care,
sbowling

Hey sbowling,

Thanks for the reply. It does help to have support and I feel you guys are the only support I have. My husband don't want to deal with it. All we do is fight over finances due to us having to pay for meds which costs a bundle a month. I am trying to get my attorney to respond but it seems lately he is to preoccupied with his other cases. I keep calling him and still get no response so that sure don't help with my husband and I fighting. I am trying so hard to keep up to everything and it feels that I can't do it anymore. My daughter which is 13 yrs. don't even want to spend time with me. She would rather be on the phone or computer. I can't seem to get anyone to help support me and I cry alot during the days because I feel so alone. Yes I am seeing a psychiatrist once every two weeks and they have diagnosed me with PTSD. I try to get through everything, but it is so hard. I can't get much help from my daughter or my husband. I am so worried about my legs. I have no diagnosis, but I think I know what is wrong with them. I am still trying to get my attorney to talk to me about a neurologist, but I keep getting know reply from him. I feel like I am so alone in this world and sometimes I just can't take it anymore. Sometimes I scream into a pillow during the day when i am alone. I am alone alot. My daughter goes to school at 7:40 am and gets home at 4:00pm. My husband is a truckdriver and gets home when he gets home.So I guess being alone this much doesn't help me at all. We are just so short on money that I can't really go for drives because my husband says I am wasting gas so when I do go shopping I spend sometimes 4 hours at wal-mart just looking so I can be out of the house. My husband gets mad at me for that because I don't need to be gone that long. I realize he is under stress as well with being the only one bringing the income in, but he has to realize I am trying as well. I tried to get a job when I lost my job over this injury for one and a half years and gave up because I was getting no where except putting myself further into depression. At that time I still had no idea what was wrong with me it took the docs 3 years to diagnose me with rsd and by then it was to late to even try and put it in remission. I went back to school and got an AA degree in Health Information Technology, but look at me still today. I still can't get a job so I just gave up. I didn't know what else to do. I have been trying to get disability and have been denied 4 times. I got an attorney to help me appeal it and social security said that we were 5 days late at appealing so we have to start all over. So I just got done filling out 2 packets for them and by the time I was done I was in so much pain, but I kept pushing myself because I knew it was to try and help get the stress off my husband. Now I sit and wait again. In the meantime I still have no idea what is wrong with my legs all I know is they hurt,are weak and tired. They give out from underneath me for no reason at all so that is why I am using my special crutch that was made for me after having my last knee surgery. I don't have to put any weight on my hand, but the grasping is something that really hurts. The doc said to use a cane or a walker, but I feel i will still have the same problem with grasping. I am just so scared of being in a wheelchair at such a young age. I am 36 and I don't think I am really ready to be in a wheel chair. I don't know how to deal with my legs right now let alone try to deal with a wheel chair. I have not said anything to the doc about grasping the crutch because I am afraid he will want to put me in a wheel chair. How do I deal with all this pressure? Do I say something to the doc and pray to god there is another way so I don't have to be in a wheel chair or do I just keep my mouth shut? Please help. I am so scared and confused. What do I do?

Thanks for taking the time to read about my babbling. Sometimes I just don't know when to stop. I am sorry.

Sincerely,
Tracy Tracy(screwballpookie)

Tracy, I feel so bad that your having such a bad time. All of the feelings you are having are very normal. RSD is tragic. It changes everything. It can make us feel like we are not giving our share. You can only do what you can do. When my spouse (who is very supportive) has a bad moment with our situation first I let him have those moments and then I try to explain how stress is a trigger so we have to do the best we can together. I hope you can get your family to understand about rsd. The support here will be great for venting. Everyone here listens, so don't feel bad about writing a lot. It is also very therapeutic to write. There are a lot of friends here. Take care keep trying ways to lower your stress because it becomes a vicious cycle.
Hang in there. Lots of hugs to youXX

Debbie