What a road we travel. Rsd has been a REAL trip!

I got the RSD way back in 2000, and worked about one year more. It wasnt that I wanted to stop working, I was forced out because of low job performance. It was then that it was dawning on me that life as I knew it to be was radically different from what it was before RSD.

Took them almost 4 years to quit saying it was in my head, and then bomb me with the RSD information. I really wanted to run from that revelation, but I couldnt run anymore

It all started in my right leg, and has now spread into my right arm and shoulder. The hips have really started hurtin the last few months, even to the point where I cant lay on my sides. Used to have some serious pain in the ankle that now is the entire leg.

I think the scariest thing is when they told me that it is effecting the central nervous system. Because of this my blood pressure is sky high, and even with 3 different BP meds it still runs high.

Pain is still the main factor in every day. At one time I was on lots of different pain meds that worked to bring the pain down some. But left me in fog all the time. Topamax worked for a while too until my hair started falling out, and it became increasingly hard to pee.

So today 3 BP meds, lipitor, and norco for pain is all I take everyday. Only one or two norco works to bring the pain to a tolerable level per day. At least I have some of my brain activity back LOL.

I have to use a cane most of the time, and for the loong walks I use a power chair. It seems to me the weakness is always getting worse not better. Although the weakness is getting worse, at least it is gradually happening.

One thing I would recommend is that anyone that has RSD get their bone density checked. When they checked mine the first time it was low normal. This was about 4 years into the RSD. They checked it again a year later and they said now it is osteopenia. This has also been getting gradually worse as time goes by. The doctor says it goes hand in hand with the RSD.

Sorry I didnt stick to the format, didnt have time to answer that way. Hope everyone is doin well as can be expected, and has a great holiday season!

The way you answered was fine, it said it all. I appreciate your time in helping me check in and collect some information on where everyone is now. Thank you again, I will put everything to gether when we hear from more members, Sincerely, cZ

I was originally diagnosed in 1990 or 1991, after a knee injury and DVT from immobilizer. Initially effected my right leg and knee, I spent 4 yrs in pt, learned to walk again. The pain was incredible, it was burning, electric cuurent and sometimes felt like I was being jabbed with a hot poker. It swelled, turned pretty colors and I couldn't stand anything touching it. I went through many doctors trying to get relief, did Phentolamine blocks but didn't get enough relief according to pain doc to continue, tried lots of meds, Ultram, Neurontin, Klonipin, Nortriptylene, Trazadone, and every anti-inflammatory they could prescribe, but no one wanted to prescribe any real pain meds. Eventually I stopped everything and it went into remission for about 8 years, then last summer it came roaring back in my leg after another DVT, this time it has spread to hips and spine and lucky me I fell in August and fractured my scaphoid in wrist and am having problems with the rsd spreading there, it is currently burning some, though not as bad or often as my leg, it is mostly the temperature change and color change, my hand has been cold and I can't seem to get it and keep it warm. My skin is very dry all over my body, and is shiny on my leg, I too have experienced some hair loss on my leg. I am currently in OT for my hand and thankfully my PCP is willing to prescribe pain meds for me. I have been taking Skelaxin 800mg and Norco 7.5/325 for over a year, may need to increase the Norco. I have been trying to see a Neuro, but everytime they hear rsd they won't see me. I am working full time in Social Services, thankfully I work for a very flexible agency and it allows me to come and go, set my own hours and work from home when I need to, I just started back in the field last month, prior to that I had worked for 1 year for SSA as Medical Disability Examiner, what a nightmare, way too stressful which aggravated the rsd. I didn't have any flexibility there it was awful, now I can't believe I worked like that. I do the best I can, I use my cane when I need to and rest a lot. There is so much I can't do anymore, as standing and walking are so difficult. I'd like to look into SCS if I could find someone in the Orlando area willing to talk to me about it. Anyway I think I have tried just about everything, with little or no real success, even tried acupuncture and Tens unit which really set me off. Somehow I keep going despite the fact my doctor told me last year to go back on SSD, I was on it for 7 years prior to the remission, it took me 3 years to get and I just don't want to deal with it and wait that long again, so I choose to work, somehow I am doing it because I refuse to let rsd get the better of me.

I got it in mid-'98 but at first it was nothing of note. I was strong as a bull and as active as a small herd and RSD was just an annoying pain in my hand. But it kept getting just a little worse and started causing fits for my digestion since this pain was so stressfull for me. After a time I started realizing the pain was associated with usage. If I took it easy with the hand then the pain was better and digestion OK. It was all downhill from there.
Over time everything started falling apart and my life just started imploding as I had to give up one thing after another. I still worked for a long time but used one hand almost exclusively. Eventually the symptoms and pain expanded and got worse and working became most problematic. I wasn't diagnosed until mid-'03 however. The doctor told me that the prognosis wasn't as bad as I might think and that most patients eventually get on the right combination of drugs that they can function.

My symptoms have been far too numerous to even attempt to list and there are some new ones that are in themselves disabling but I'm still active for up to a few hours per day. I still have some strenght on my right side and can be very productive when I work. I have nearly as many bad days as good ones and I'm finally learning what will set me off so don't get the most severe symptoms and pain as often as I used to. Memory was a problem early on but was probably caused by medication. It seems to be returning a little but might not be caused by the RSD or the meds this time.

I try to go out every morning but only make it four or five days a week. On good days I'll swim and try to maintain a schedule with this as much as possible.

I do a lot of reading and surfing now and find the pyramids extremely fascinating. This interest is expanding a little to include more early history and late prehistory. I take care of my mom's house and all my own chores. There's not much social life left but there's still family.

The biggest problem recently tends to be stress and, in a way, it long has been. Depakote keeps me on an even keel and helps with the pain a little. Neurontin helps with the pain a lot. Tizanidine allows me to sleep because without it fine muscle spasms keep me awake. Seroquel helps me to sleep. Norvasc keeps the blood pressure down even when pain levels are high. Keeping the blood pressure down prevents headaches and other problems. I have a few meds I take in the event of emergency. Some of my specific symptoms are overwhelming. I also sometimes need additional help getting to sleep and get side effects from too much seroquel.

Pain killers never really worked for me. Methadone helped me not care about the pain but it didn't really ease it. Even a large quantity of morphine just got me to quit screaming though the pain was little different. I got this when I wakened from an unrelated operation. My hand hurt so badly that I woke up to my own groans and it got worse from there.

The worst thing about this is the feeling of powerlessness and the lack of control over anything. I was once almost fearless and micromanaged my world and now I'm afraid of the dark and can hardly manage what little is left of it. I suppose the best thing is that it has slowed me down so I can appreciate parts that were invisible to me in the past. My greatest hope is that someday I can get off the neurontin since it affects my mind quite a bit.

Dear Ima, thank you for sharing your struggles, I can so relate to the feelings of powelessness and lackk of control. It to me is one of the most devasting aspecsts.The pain and time management does not leave much room for joy, i think in the end thhhis is our biggest struggle. I enjoyed your sharing of the history channel. Im determined to have something to share when I do recieve a visotor- only problem i have is memory and retelling the interseting parts. Thank you again for particiapating. I am looking foward to collecting all and posting. Sincerely, cZ

I have to keep this short tonight. I was diagnosed in 1989 with RSD. First in my right shoulder. I had to have a surgery to repair my shoulder and it spread from there. I now have full body RSD. I have had 3 series of 10 each stellate blocks. I also had a Upper Thoracic Radio Frequency Sympathectomy. I now treat myself with HBOT in a home chamber at 2.4 ata. I have bone crushing pain, spasms, swelling, mottled skin, frozen cold extremities and I also have burning pain. All this is kept to a minimum with HBOT.
My life is a constant planned existence to keep pain at the lowest level possible at all times. HBOT has been the saving treatment and I am thankful, but not a cure for me. I, also like many of you was tested for Lyme. Not enough markers to test positive. I don't believe there are any negatives, through the CDC, but I could stand corrected. I live my life the best I can each day to my standards, not anyone elses. I am not sure there will be a cure in my life time, so I just move through each day with gratitude. Not so graceful at times, but certainly thankful for each painful night I survive.
This is the really short version. I left out all the details of meds, too much meds, side effects of meds, the effect on my family and the diminishment of quality of life I have suffered, until I realized there was still a lot I could do, with concessions, exceptions and proper planning. Each time I check into the forum or speak with one of you, I realize that I am in Good Company!!!! I AM BLESSED. I have learned a lot from the RSD and the daily challenge of pain, limited range of motion and the mental strain. My hands are swollen and painful tonight, so I'll close for now.
All the best to each of you,
Diana

thanks for the replies, I am encourage to day to see so many more responses. I hope they will keep coming. It is interesting to see how the meds are being managed and what the alternatives are. Such as Diana's hbot. Im not sure if you still require Meds Diania, I know you have your own chamber, something I too hope to have one day. Sorry for the continued pain form everyone but thank you so mcuh for continuing to answer this simple survery, Sincerelly, cz

Sherimac,
This is so helpful, you are one of the first people that i have heard fro that has been able to continue working.It seems as though you have been able to make you job work for you best you can the standing is very diffucult for me, anything over 20 minutes causing a severe spinal flare in the thoraic area. Thank you so much for replying. Sincerelly, Cz

I work because I have to, for my own sanity. I was home 7 years on disability and it was aweful, there is just so many Danielle Steele novels I can handle or so much daytime TV, LOL. I also have to work because my husband hasn't had steady employment since he lost his business in 2004. He is currently out on medical leave, had shoulder surgery in September after a motorcycle accident. If I didn't work we wouldn' eat. I just keep going as best I can. I am in pain 24/7 my back, hips and leg hurt all the time, it is hard to climb stairs, walk, stand or even sit sometimes. I am constantly moving and changing positions. I come home and go to bed most nights and spend a lot of the weekends in bed, that is how I am able to work. Lots of flexibility.