Reflex Sympathetic Dystrophy (RSD)

[jcoale]

Hi! I have had RSD in my left foot for approximately one year. It developed as a result of a fracture to the 5th metatarsal August 1, 2009. About 8 weeks after the fracture I had to have surgery on the fracture because it wasn't healing and that's when the excruciating pain began. Unfortunately, I went undiagnosed for almost one year and now the RSD has spread to my ankle. I use a cane to walk most of the time and have difficulty with everything in life. I have been through many medications, multiple stellate ganglion blocks and am now looking at a spinal cord stimulator trial next week. I was wondering if anyone could tell me what to expect during the trial period. Is it painful putting the leads in? What does it feel like when the leads are turned on? Do you feel tingling in your foot or whatever the affected limb is? Or is it just like getting a stellate ganglion block? I feel like my life is ending the pain is taking over everything I think about. I hope this is the answer.

Thanks, Julie

[meglaser]

Hey!!

Take a look at Christine's posting that I responded to as you are more than welcome to call me as well with questions as I have the stim and it was a wonderful thing for me!!!

Mary Ellen Glaser

[jcoale]

Hey Meg,

Thanks for responding to my post. I have read a little about you and are similarities are a little eerie. I have RSD in my left foot initially and now it's in my left ankle. I also believe that I have RSD in my back from all the nerve blocks. I can barely stand from a sitting position anymore because of the pain and I never had the pain before I received those injections. They have scheduled me for the trial stimulator this Thursday and I am looking forward to it. My foot has been in sooo much pain lately. The stomach problems that you talk about with the RSD are just like mine. When my RSD is bad, I begin having terrible abdominal pain, diarrhea and cramping. It is awful. I was in and out of the hospital 5 times time March and April and finally went to the Cleveland Clinic in May for treatment. They never found and answer to my stomach problems. I know it is related to the RSD. The migraines, I have had them for most of my life, but when I developed RSD they developed 10 fold. I have been debilitated by them since. I have a medication I give by injection to keep me out of the ER 2-3 times a week. By now, I am immune to most of the meds they give me. The pain meds don't even touch me and I am on some strong stuff now. I feel hopeless. I have no life and live to try and make my foot feel better. Anyway, I found your number and I am going to try and call you tomorrow. I hope that's o.k.

Julie

[meglaser]

Hi Julie!

Let me know how you made out!! Remember it probly will take care of the back mostly (my stime only covers about 40 % as a result of me having facets disease that the doctor and myself were not aware of until a year after the surgey)

Everything you are telling me is scary as it is so my like mine!! I just went to the ER a few weeks ago for my stomache, they gave me a shot and sent me home as I told them I was having a flare up. It seems since I was in an out the hospital (22 days last year) that they believe me finally. My sister (who is a retired nurse) has told me to carry the literature regarding RSD on my since I do not have the bracelet. A few times I was unconcious and they put an IV in the arm that I had radical nerve palsy in (I thank god I can use my hand as my family doctor misdianosed me but pain mgt sent me to a hand surgeon at the end of the window where the nerve damage would be permantly. However I am still having problems - It responds to stress like my foot - ice cold and where I had the blister will hurt for no reason or the skin will start peeling again. (I did this in august - that is the same with my hip. (It is fun recharging my internal battery as the blister on my hip is on the side of the battery. Sorry so long, but really let me know if you have any relief from the stim!!

Mary Ellem Glaser alias Meg

[reruho]

Meg,
Your skin peels? Does it just appear out of nowhere or do you have sometype of warning?

This spring my forehead peeled. I just woke up and my forehead was red and the skin was peeling off like a sunburn. It took a couple of weeks before the redness went away and the texture of my skin was different.

I thought RSD but chalked the peeling up to the fact my brother-in-law had just died. My PM has not seen any skin rashes before so he just said go to a dermatologist.

Reta

[jcoale]

Hey Meg,

I have terrible news. They called me today to tell me that my trial stimulator placement was cancelled for next Tuesday. Something about the company that makes the stimulator will not allow the center I usually have my shots at, place their equipment because I have Medicare. They say it has to be done in a hospital. So my doctors office referred me to a new doctor who works out of a hospital in South Bend, Indiana. Now I have to possibly have all the diagnostic tests redone with this new physician and be re-evaluated to see if I am a candidate for the stimulator. My insurance has already approved the trial and placement of the stimulator. This whole thing is ridiculous. I can't afford to continue paying for the same tests over and over. Im already over my head in medical bills. The pain is so bad that I just can't stand it anymore. I talked to my doctor's assistant today about it and they want me to go to the emergency room but the problem with that is that the ER doctors don't know anything about RSD/CRPS. These ER doctors just think you are a drug seeker. My doctor said to have the ER call him and he would explain my condintion and what I needed. Have you had to go to the hospital for pain control? Have they ever admitted you for pain control? I want to be prepared when I go there tomorrow. Any tips would be appreciated. My meds are not controlling the pain. I am on 45mg morphine 3x day, percocet 5mg 3xday, neurontin 600mg 3x day, propranolol (blood pressure medication) 3x day, Xanax ER 0.5mg 2x day, pamelor 50mg day (antidepressent/pain control), ambien CR (sleep medication) 12.5mg at night. And the list goes on. All these medications are making me like a vegetable. Since the stimulator only takes away like 40% of your pain, what do you take for pain control? If you have been admitted to the hospital for pain control, what made them admit you?

[chrisandrob4ever]

I had this stimulator trial put in last Wednesday morning. It worked great till the next morning i was vomiting blood and had a severe headache. It is now Tuesday and I have lost 26lbs had the stimulator removed and recieved 46cc of bloood back into my spine. Still having the headaches and can't eat. Think very careful before you go through this procedure. I just wish I could now go back a week and change my mind. I never read any of this side effects I trust me I looked now I am scared that I am gonna have to be put in the hospital to recieve fluids because I am so dehydrated. The Stimolator if goes well for you will tingle. Good luck and God Bless

Thanks,
Chris