I am also over the five year mark.
My RSD started when I broke through a board on my deck at home and was caught between the 2x4's. My husband had to crow bar me out of the situation. The initial days following the accident were uneventful. I went to the ER and had some woodchips cleaned out of my right leg. This is also the same leg that I had ruptured and repaired the Achilles tendon. Wondering if RSD was laying there ready to pounce. Anyway I was in PT for the achilles at the time and after my deck accident my leg broke out in a rash and was red and swelling with extreme sensitivity. I was let go from PT at that time. I continued to have problems with the leg swelling, redness and most of all the pain was huge. It was like a porcupine, needles poking me in my leg and the red hot heat.
I have episodes now where my leg is ice cold or it gets like its been sunburned with redness and actually skin changes to a burnt look, wrinkled like after a sunburn. The pain is high on most days. I have times like today where I just crash and burn. Usually the pain makes me extremely cold all over. I have to go to bed and cover up as much as I can without touching my RSD leg.

I am working as a Special Ed. Teacher only getting this job this year after completing my Master's degree in Special ed. I have a job that has me doing short assignments that are 2 hours in length so my day is flexible in that sense. I have to drive over 50 miles to get to work and 50 miles back home. I think this is effecting my pain level a lot. The vibration from the road is a killer for me. I get home and have to go to bed or fall asleep in the chair. I take pain meds throughout the day as directed but also as I need to get through my task lists.

Walking is difficult especially in the morning. It takes me several hours to be able to get through the pain and to make it to the car. I get up early to just be on the computer while I take the meds to get me moving for the day.

Mentally I think right now I am just scared. I don't know how long I can last with working. I would choose to be at home if I could. Its very difficult to do what I have to during the day. I am having to really ask for accomodations at my new job. I did let them know at the interview that I had some health issues. My house is horrid. I let that go because I can't do it all. If I have to work than I just have to let the house part go. I have a hubby and teen son that help out in that department but not like a how I would do it if I could get it all done in the day.

I take 3x 600mg Nerontin, and 4x7.5/750mg. Vicodan daily for pain relief. This seems to work for me now. I do have break through pain daily and just try to do other things to make it better. Sometimes I have to double the dosage and try to work it out through the day. Hoping I don't run short of the meds at the end of the month. I have had ganglian sympathetic nerve blocks on three occasions. They really don't work much. I do notice that the swelling subsides however. The pain is still there. One time they shot me right in the joint of the leg and that was better than in the lower back. The next choice for me is the spinal tens unit. I am waiting until I absolutly have no recourse but to go in that direction as there is nothing really saying it works.

I am now in a PT program but had to stop due to my leg flaring up. It became red, swollen and broke out in watery blisters. The blisters are large and when they became so large they break and than its water running down my leg. I am just coming out of that and will resume the PT. I do see a chriopracter for lower back pain as well.

I suspect that I will be on disability in the future. This is just a realistic view. I know that I need to stay positive and I do. I just work each day as a new one and take it from there to make it through. I have some memory issues that effect me at work. I think it really cost me my last job of 17 years but I didnt' know that I was having a problem. Now I see a pattern in that so I write things down and keep everything so as to refer to it. that is no doubt the nerontin. I need to be on that med so I just have to deal with it.

Most days are between 5 and 6. The problems I have are night sweating, muscle spasms ( charlie horse type that last for 45 min), burning and temp. changes on the right leg, swelling, sensitivity to anything, hard to sleep in the bed due to touching of the blankets etc, insomnia from pain, deep pain to the bone, stabbing shooting pains.

Hope this helps your survey.

I've had RSD for about 7 years now. It started after an ulnar nerve transplant and relocation of the median nerve with a fatty pad graft. I have constant pain to the bone. I no longer have lost my finger nails though and the hair stopped growing. But, the color in that arm is always abnormal and I can't control the pain. Even with nerve blocks in my neck and pills. The muscle is atrophying and the bone isn't as large as it used to be. I don't recommend any nerve transplants to anyone, ever. On top of that I have Multiple Sclerosis and congenital hypothyroidism. I'm just in pain 24/7.

VF, Wow, so well written, thank you so much. I really do get exactly where you are. I can not belivie you are making that drive. The pain must be excurciated by the time you are home.I ve been in bed since Thanksgiivng after driving(riding) I dont drive anymore, wrapped in heat- tyring to end a massive flare. I cant imagine 100 miles a day.Your very realistic too, thank you for sharing this it will be so helpful to so many. Just a thought, have you read the Intractable Pain handbook? It is us, I have found it to be a very valuable tool. Also Baclofen has really helped me with spasms and the an30-45 minute chalrlie horses.Ttthank you again so muchh.CZ

Thank you Hola so much. I am so sorry for your pain.May I ask are you able to leave the house? Also , the MS,(so scary) Was that diagnosised recentlly? I am tyrying to see if there is a pattern with the RSD and MS.
Hola, thank you so mcuh for responding, it was brief however it said it all. I greatly appreciate your response. Sincerelly, Cz

Hi CZZ74, I'm glad I could help. I can leave the house usually now, although I wasn't able to even dress myself at first. But, the nerve blocks may have repressed a lot it's progression the physician thinks. My arm is stiff on a daily basis and has involuntary movements which are mainly very embarrassing. I try to hold the RSD affected arm down when that occurs with my healthy arm or hide my hand in my pocket lol. The MS diagnosis followed the RSD diagnosis approximately 1.5 after. I do believe that the nerves were damaged from the MS and the physicians nevrer suspected that and operated without any consideration of the possibility of another disease (hypothyroidism being the culprit to nerve injury was their initial belief). My fingernails were also the most embarrassing. When they did regrow, they grew in VERY thick and the arm hair was almost long enough to braid for a while lol. The skin was purpish and now it's just pink . Best of luck to you and I'm sending you well wishes

Oops! I forgot to mention that I was on Elavil, Topamax and Neurontin for nerve pain for a while. I gained a lot of weight, but they helped. I now use anti-inflammatories and creams containining pain relief agents, use the shower over the affected arm to "loosen" it up and massage it daily. It's the type of pain that checks in and never checks out and tends to spread. It's climbing up to my neck now and often it will sneak into my the side of head and back. I have to choose the time of day when it's most painfree to venture out and carrying items on that side HURTS or the touch of someone often amplifies the pain immensely. As far as clothing, I can now wear long sleeves, providing it's a very soft cotton. No one sees the scars as they are on the underside of my hand and arm luckily. LOL, for a while I used self tanning creams to contrast the purplish color and to create an optical illusion that both arms resembled one another. Take care.

I know the ride is crazy. I forget that it makes me flare up. My family doesn't really get that part of it and I am in denial so I just do the drive. But what happens sometimes is I come home and go straight to bed to warm up hoping the pain will subside. I am hoping to move closer to work in the future. It would help a lot. Even on the getting up in the morning part. I am comforted to know someone gets where I am coming from. This stuff is just so wierd no one really gets it. I am sorry you have had to be in bed for the days since Thanksgiving. Did you get to celebrate with family before flaring? I have my cousin living with me and the past months my RSD friends have been just horrible and making things unbearable. The best way is to just go to bed hoping I will be better when I wake up. Thanks again.

I've had 5x 7day awake treatments now and hope to have more. Unfortunately they only work while they're running now, with a little carried on into the following weeks, but the majority of my pain and problems return as they slow the dose down then stop it.

I'd love to be able to have ketamine in a daily form. I know of a few US RSDers that take it daily (in liquid form I think) and I've asked my pain specialist if we can have that, but it's not yet available in Australia. Which is crazy really, as we've had access to ketamine infusions (they were even pionerred here for RSD!) for far longer than other countries. I know I'd benefit from it if I could take it every day. I trialled methadone earlier this year, as it is similar to ketamine and we were hopeful it would help with my pain in the same way ketamine does, but it made me violently ill, so I reluctantly crossed that one off the list.

I still remain hopeful, though, that the NEXT ketamine infusion will work as well as my second one did- putting me in a form of remission for ten months. If it's worked that way once, it's gotta work again!

Oh, and I should add that I'm off the neurontin now. I found it wasn't helping after a while, so I lowered my dose and didn't even notice a difference. Even coming totally off it didn't increase my pain levels, which shows me it wasn't doing anything anymore. Frustrating, but at least I know now, rather than continuing to take it (and spend a ton of money on it- AUS$70 a fortnight) for any longer.

xx

Thought i'd send a quick reply. i have had rsd 12 years and counting. mine was post op hip replacement gone wrong. i am on neurontin 400 mg tid and two meds for blood pressure which is still a bit high. tranxene for sleep and leg cramps. i was an ICU nurse and never worked after the surgery. i am never really comfortable and it has spread to the other foot and my hands have either rsd or reynauds, but as my doctor says it makes no difference since ther is no cure for anything. i have horrible and long hot flashes and my head will be dripping sweat and my legs and hands freezing ... go figure. it is depressing and i work hard to stay busy but my mind says go and my body says no ... i also have a highly degenerated lumbar spine which causes great pain and of course less mobility.
i also just started a thread about impending doom because i often feel i am going to die, not in a psychological sense, but in a my heart is giving out sense ... if that make any sense at all.
so that is my story.

Dear Joan, thank you for writing, yes i do know what you mean. I too often feel that way but you have put it so well. If you type in the search box the hand book on intractable pain - the heart syndrome you are feeling is well described. It is an excellent hand book. We have something else similar too- our spines. Mine is a mess- herniated discs from C1 through T12 nothing in the lulmbar. But the spinal pain will reactivate your rsd on a daily basis each time you move. This is what Dr. Schwartzman has explained is my problem. By the way prior to my rsd, I have never had a spinal problem. especially there. I oftern wonder if the lack of blood flow to the spine is drying things out and causing herniations especially in weird areas like the thoracic spine. I feel for your pain. Thank you so much for answerring. Please take a look at the INtractable Handbook for Pain, dr. tennant. Let me know if you have troouble finding it. Take care and thank you again Joan, God bless. CZ Thank you for your specific information about freezing and sweating at the same time too