I just wanted to know if anyone else feels this way? Take me - I saw my doctor yesterday and he ordered blood tests to look at the normal stuff (thyroid function, blood sugar, liver profile, etc.) So I took the slip to the lab (sweating from anxiety the whole way), got registered, was taken back to a seat for the draw. By the time I sat down I was sick with worry that "just that one little needle stick" could ruin what is left of my life forever and put me back into level 10 pain. I was so afraid of spreading the RSD that I got up out of the chair and almost ran to my car. Once I was safe inside my car I cried and cried out of frustration and depression over my own failure and the constant fear I have of this disease.

I have been kidding myself thinking I was getting back to normal; now way, I do this "altering" all the time. I won't ride my bike anymore because I fear falling; I won't walk around the house with flip flop shoes for fear of twisting my ankle and causing a spread. I am so afraid when I am cooking for fear I might cut my RSD hand. And going to the dentist for a root canal - took me almost three months (and 2 endodontists) to get the courage to go through with it. In the end, they look at me like I am a hypochondriac, I can see it in their faces. It makes me feel even worse about myself and my small little life.

I thought I was handling things pretty well until I saw myself in my car mirror yesterday and realized just how much I have changed since this disease. I hate living in fear of a spread or another bad flare. How do you guys deal with this? I almost feel like I am starting to live in a bubble to protect what little function I have left. I mean, gosh, I should be able to have blood drawn. I have read the protocal (get a pediatric needle) but I was turned down for that yesterday because the tech didn't think it was necessary since she could see my veins popping out of my skin and I "look so healthy" to them.

How can I better deal with this? Would counseling help? Will it always be this way?

Lisa

I am exactly like you and I am going to need surgery on my hip eventually!! With the blood, last time I went I found a person there who knew about RSD so she told the one who was taking the blood not to tie the tourniquet tight and that really worked. No pain after (the previous time was a nightmare after blood was taken) I also live everyday in fear of where it will spread next. It totally stinks but I guess you have to think worrying won't change the situation. So I choose not to worry .....some days anyway.

Well hope I helped with the blood test

Deb

I know how you feel. It seems anything we do can cause it to spread. I have the scs and the battery in the butt. I'm going to have the battery moved July 15th. My dr doesn't think it is the battery causing all the pain, but rsd that has spread now to my butt. I have been trying to live my life normal. this includes taking care of my horses. about 2 wks ago, one of my boys went to rub his head against me and hit me with enough force to throw me into the stall door. Now there is a chance that the lead for my left leg has been moved. the one in my right leg is fine. I'm hoping that reprogramming the unit will fix the lead problem. If not, I know what is next. Do I regret going back to my horses, No. I believe in quality of life, not quanity. I love my boys, and if I can't be with them, then what is the reason to be here. My youngest daughter gets married this Sept, and it is time for her to start her own life. One that doesn't revolve around us. Of course, I've had this rsd for over 5 years, so I have come to terms with it. I will probably never ride my boys again, I'll not be going on roller coasters, (which I love), bumper cars, etc. but that is ok...they are dangerous for scs owners. but I can still do some things, and if anything happens, then there is nothing I can do about it. I hope that you will try and enjoy what you have and don't do anything that can cause it, but please don't put yourself in a bubble. You need to have some joy in life.

Hugs
Mary

Lisa,

I just saw your post last night. I will try to give you a call today. Bless your heart. I just can't address the RSD very well since I don't have it. I can only relate to something similar...neuropathy and radiculopathy. It is just sad that you have to live in fear of a needle stick. What I have done in the past since I know neuropathy can spread it just to call my Neurologist and ask her opinion before I have anything done. I know this probably isn't very helpful but I didn't know what else to do except to check with her first. As it turns out, I didn't have a spread of small fiber PN after this one particular procedure. But it was a fear that I had. I have to agree with the other posters though. You just can't live in fear like this or rather live in a bubble. I know the neuropathic pain is bad since you know I have it too. I am not sure if counseling would help or not. It might but you will eventually reach an acceptance stage. You will come to know what activities or even medical procedures you can or cannot have done; same holds true with the meds. As usual and as we have talked about, there are good days and bad days. I have also been reading about pre-emptive measures. But mainly dealing with my own central sensitization. I just believe there are ways around it without worsening things. All I am really saying is that I always ask the docs before anything is done and get the "go ahead" if possible. IF, I ever need another fusion, I run the risk of worsening the PN or central sensitization. But I can't live in fear either. I would hate it. But what could I do other than to get it corrected. I run more of a risk by NOT treating it. So, you see what I am saying? And, girl, get that MRI done! Anyway, I will try to call you today...my heart really goes out to you.

Lisa,

I totally understand what happened to you at the lab. For me, blood work has never caused a flare (so far) but I have had horrible results with larger needles like cortisone injections, bursitis drains, etc. I only allow these if I am convinced it is absolutely necessary.

You have to work up the courage to stand tough and explain to the techs or doctors what RSD is all about and insist on things like the pediatric needle. Never assume they know anything about CRPS/RSD.

I was at the ER Wednesday night and once again, the nurse, med tech and doctor were all blank when I told them I had RSD. The doctor was even fairly young, and my experience has been the new docs have more knowledge.

Stand up for your rights as a patient. You deserve it, it's your body.

Hugs,

Mike

Coffee Bean ( I love the name!), I totally understand. So far I have not had a flare up, but I'm about to the have the hardware (plate and pin) removed from my left arm. My ortho doc and hand therapst feel that this is the only way I will gain more use of my hand. I know there's a chance my RSD will get worse. I've had numerous blood tests, a routine colon test with anesthesia, and x-rays with I.V. meds. They always use my "good" arm and a small needle. No flare ups with these procedures. I'll probably never ride a bike again, and I'm careful when I walk since a fall started all this. Can you find a local rsd support group? I'm new to this site, but you can definately find support here. Having a counselor to talk to might be a good idea. I agree with the others. Enjoy life the best you can. If you look around there is always someone more handicapped than you. When I start to feel sorry for myself that always happens. Also, my faith in God keeps me going. I look back at times and wonder why this has happened, but I know there is a reason. It makes me appreciate what I DO have. Hang in there. Susie

I often think it's the fear of pain and the fear of it spreading that does the most damage. The doctors have said this almost all along but now I get nervous just driving a few miles from home or leaving the house at night.

Imahopet, that is exactly how I feel. Unless people know what RSD is and what it involves, they can not understand the fear. I am getting so afraid to drive anymore, for fear of an accident and more pain. I am so glad to hear others have these fears (but not glad for your pain) and that I am not just being a baby.

I too understand. I fear going to the doctor even cause some that don't know that much about it will want to touch my effected area and that keeps me in back to viodin pain for a long time. Even knocking my leg makes tha pain rise. I fear falling so much. I am suppose to get a scs too and even with that or if my pain went away tomorrow I would be super careful. Never forget this. I am trying to find an rsd group too but the one in my area was canceled for a few months cause the leader got sick with her rsd.

That sounds so familiar. I'm afraid to do to much at work, I'm afraid to do much around the house, I'm even afraid to do much with my 8 month old daughter. I mean I do what I can. I do the dishes but hard to hold onto the scruber and bottle cleaner. I've been wondering how ppl deal with this too. I just can't get past the fear of it spreading worse, unfortunatly it is still spreading my whole right side seems to be affected.

Tiff