Hey all...have something to run by the experienced (or at least more experienced than me.)
I was diagnosed with RSD a month and a half ago. I have had four lumbar sympathetic blocks, but for some reason, they do not want to do any more. I am on Lyrica, MS Contin, Lexapro, Wellbutrin; failed Cymbalta and Neurontin due to side effects. Overall, my symptoms are less compared with onset, but still fairly limiting.
Please, please, please don't take the following wrong; I couldn't be more appreciative of the help and the Lyrica makes me foggy enough to offend without being really aware.

Am I seriously going to have this forever? Really? I'm not going to get better? I'm not going back to work? For some reason, I thought that for me this was going to be a month or two and I would be all better. Suddenly, I feel panic-y and hysterical, like my life that I've worked for for 38 years is down the toilet and I will be a burden on my family forever. I didn't think this would happen to me. I know this sounds, maybe, I don't know, arrogant...but I couldn't imagine this was going to be permanent for me.

Have I been in denial all of this time? How long should I have it until I should accept that it is permanent and that there is not a real chance of going back to my old life? I need to know when it's time to accept it as permanent thing or when it's time to keep fighting and looking for the "Holy Grail" treatment for me.

This may be a minor freakout, but the anxiety is killing me and I'm starting to have thoughts that I should just check in to an inpatient rehab and lay there til the bedsores kill me. I fear I am losing it.

Any thought as to how long I should wait before booking my bed?
Lori Lee

Dont know about RSD...but wanted to give you a great BIG HUGGGGGGG

sorry you are going thru what you are!!

so I dont have answers, but know what you are feeling a bit anyhow...

I am a mom of five..work full time...have neurological sxs for almost 9 years....mainly MS type sxs...but no diagnosis....

BUT, I have numbness/painful tingling pain, balance issues, and tons more stuff....

as I am only 39...I struggle some days on bad sx days, with the thought, why at this age do I have to feel this way..or why at this age do I have to wake as I do..struggling to make it to work...(wishing I didnt have to work)...

I have to be careful not to overheat body, I have to avoid stress...haha, and avoid overdoing...as these all can aggrivate my sxs.....

I am learning...and realizing that this for me is a lifetime thing I imagine...even without a dx...

mainly wanted to share, but also give you so many hugssss and know people understand and are here...hoping someone with your condition will chime in to give you more info..hgusss,sarah

I don't have RSD, but I do have a mild version {now} of RSI/TOS .
Over the years I have noticed that when most of us acquire a chronic condition we tend to go thru stages of grief.

[“five stages of grief.” While these stages represented the feelings of people who were themselves facing death, many people now apply them to experiencing other negative life changes (a break-up, loss of a job) and to people facing death or experiencing the death of loved ones.

Kübler-Ross proposed these stages of grief:

* Denial: “This can’t be happening to me.”
* Anger: “Why is this happening? Who is to blame?”
* Bargaining: “Make this not happen, and in return I will ____.”
* Depression: “I’m too sad to do anything.”
* Acceptance: “I’m at peace with what is going to happen/has happened.”

However, Kübler-Ross herself never intended for these stages to be a rigid framework that applies to everyone who mourns. In her last book before her death in 2004, she said of the five stages, “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” ] http://www.helpguide.org/mental/grief_loss.htm

In general keep your hopes up and a positive attitude that whatever happens you will do your best to make the best of it.

There are some other treatments for RSD - ketamine, HBOT, certain specific physical therapies - the members here can add more and clarify because I'm sure I left out something...

Yes, it really is forever. I would never say that you'll NEVER get better though. Remission is always the one hope for everyone, even when you're long past the "optimum" time to catch it. I think Diana had it for years, did HBOT and has her "life back" so to speak. She shows us it's never too late. There's also another woman....can't remember the name....who has had phenomenal success with lidocaine infusions.

Working is an individual thing. I can't work because I can't stand or walk for more than a couple of minutes. Most of us can't work because of leg and/or arm issues. For me I have it in all limbs and hips, have been like this since 11 months after it first began. Now, almost 6 years later, it's still there and also in upper and lower back. Only the middle of my back and torso,head,neck,face aren't affected. Maybe it'll move more, maybe not. Either way, it doesn't matter much. LOL There are many others who are "bad off" but work because they have no choice being the only provider and have children. Others work because they want to and "push" through the pain to keep going as long as they can.

No one ever feels it'll be permanent for them. I mean, come on, none of us ever heard of this before a doc or pt said you have rsd or could have rsd.

I believe a lot of people go through denial in the face of rsd. It's quite normal! There is no "set in stone" time of how long you live with rsd until you accept it. *shakes head* Nope....us humans don't work like that. It is, again, a very individual and personal thing. You work through all the stages of grieving and whatnot until one day you "accept" your new life and live it to the fullest. I don't think anyone on here would say, it's been long enough, get over yourself and deal with it! LOLOL We all had to make our journeys just as you're doing. For me, I accepted it right away and adapted my life as needed. It took me longer to come to terms over the loss of my career and a job I love.

Ummmm....check back on the booking the bed in say.....3 to 5 years from now? Seems like a decent wait to me. LOL

You aren't losing it at all, just coming to terms with living, surviving and thriving with rsd. Take it easy on yourself a bit and stop feeling like you HAVE to do something or feel a certain way. Take each day as it comes.

I know it's not up everyone's alley but I'm a big believer in writing. I've always wrote, in notebooks, journals, pieces of paper shoved in binders and sometimes just jumbled together. Writing is a way to get feelings out, put them outside and later on come back to look at them from a neutral point of view. You can also see how your feelings evolve over time too. If writing with a pen and paper is hard or not you, then open up notepad on your computer, type and save.

Find things to do to keep your mind busy. It helps with pain and also keeps you from dwelling on "stuff" that has your brain whirling a million miles an hour. I've found quite a few things to keep the old brain occupied. I play with clay. It's creative as well as good pt for my arms and hands while being a gentle therapy. I read, a lot....always have so nothing new. LOL I put together bead earrings and "rosaries" when I feel like it. I pick a topic, research and learn all those things I never had "time" for. I do a bit of digital scrapbooking which goes along with doing my family tree. Genealogy is highly addictive! LOL I do paint by numbers. Beating up a pillow helps with those, "I just can't take it anymore" days. I throw myself a pity party once a month whether I need it or not. Watch sappy movies and eat junk food. It does help a lot too. The rest of the month I cry when I need to, have bad days and laugh as much as I can. A sense of humor is IMO essential because it's much better to laugh than cry when you can.

At the end of the day you can let rsd take over your life and destroy it, or you can take hold of rsd and rule over it. While it sounds simple, it's not as simple but with time can be done. I hope I've given you some things to think about and maybe some ideas as well to help you.



Karen

Thank you so much for all that you've written. All of a sudden I am just paralyzed with fear and need peer-answers more than the hedging doc-type answers. Your'e so sweet to take the time, Karen.
Lori Lee

I'm so very sorry that you are going through all of this - I really hope things get better for you real soon and I am keeping you in my thoughts and prayers.

When I was first diagnosed with RSD, I was in pretty severe denial. I was so angry with my doctor as he knew what was wrong with me but didn't know exactly how to treat my case and what would help and not help me. It seemed as though every answer to my questions was a "I don't know" - I thought, how could you diagnose me with something but not know how to treat it and make me all better. I had a Guanethidine nerve block when I was diagnosed also and that took me off my feet completely (I was in a wheelchair for 13 months) and I totally lost all cofidence in my doctor after that.

I was in the Denial stage for quite a long time. My doctors and mum were trying to help me the best they could but I didn't want to do PT and all of the other things as it made my pain SO much worse (and still does to this day).

Eventually, my Doctor refered me to Great Ormond Street Hospital in the UK (London) where I HAD to do a 3 week inpatient intense physical therapy program. The first few times I did the PT, I screamed and called my PT's every name under the sun lol but eventually my PT's explained to me that I am in pain whether I am sat doing nothing or doing something so I may as well at least try and do something. Something in my mind then clicked and it all made sense to me and I tried my hardest to do all of the PT.

My PM Doctor explained that sometimes you need things to be really bad before you can start to accept this illness and everyone reacts differently ... some people might accept their illness straight away, whilst for others, it might take a few months or even years. You will get there in the end though.

As for will you always have this disease, unfortunately no one knows. I really hope however that you will go into remission real soon and that you will be able to do all of the things you want to do. I have had RSD for nearly 2 years and i'll admit, at times, I still really want to give up but then I realise that things could always be so much worse.

I hope this helped a bit and made you realise that you aren't alone ... all of the feelings you are having are completely normal.

I am keeping you in my thoughts and please keep us all updated when you can.

I feel led to write to you after reading your post. As a fellow person in denial for a long time I just recently have come to recognize that i have to some how learn how to live with this RSD. I found myself having a much tougher time of things about a year ago. I went through losing a job I loved of 17 years to unemployment. I was scared with the problems I had due to the RSD what jobs I might find that would lend themselves to me being able to work. In retrospect I think I might have lost my first job due to some of the pain medications/ nerve meds I was on having problems with memory. I didn't realize it at the time. After I found a new job, the new boss was saying some of the same things the old boss had told me about my work. I am a perfectionist at work and type A personality to find fault in what i was doing was not in my nature. I have to really think it was the medicine more and more taking over as well as the living with pain and fatigue. I began to write things down more and be cautious about getting behind on paperwork at work. I would forget and think I had done it. So I have now graduated from my Master's program and went out on a new journey of working in Special Education. This is very hard on my body and I barely can get up in the morning to go to work. I drive over 100 miles a day which in itself is a feat. The classroom that I have is a Special Ed Preschool and I am keeping the children safe from each other as I try to bring lessons to them. I am finding I am already behind on paperwork and having a hard time grasping what I need to do for it. I am again feeling it is the medicine and pain levels causing me to have problems. I have talked now with the pain dr. about my discovery and perhaps changing to Lyrica will help and taking me off the neurontin. I don't know. Its all so time consuming and bothersome. I want to accept this stuff and than i want to be able to do the things in life I had planned to do. I myself plan to work as long as possible. I may have to change the career path I am on to something around the classroom and not in the classroom. More administrative stuff. I at least can try my time for now. I do love the work.
I worry for the future and don't want to become a burden to my family. I feel that if I can hang in there as long as possible that I have a better chance of beating this.
A year ago though I sought out this site because I knew I was fooling myself and i had to have a bigger understanding and expectation of things to come. I may have remission..yeah...that is the ideal hope. If so I can continue to do the things I want. If I don't have remission than the best thing I can do is get real with myself. I don't think I have to go to the nursing home but I can make plans on how I might see myself working part time or running my craft business more and promoting myself.
I hope that this helps a little. I think it is true we all have our journeys. I come here to just listen, vent and see how others deal with the problems related to RSD. I am thinking of you.

I just wonder when it's not feasible to think that I will be one of the "cured" ones. I am improving and my RSD was caught within a week, which are supposed to be good indicators. I love ICU nursing, but it is tough on the body and I don't want to let it go. My being out of work for an extended time has made our family finances an absolute shambles (my hubby makes about 1/3 of what I did). This just has to go away and I now find that I am desperate-doing massage and desensitization to the point of tears, contrast baths all of the time, and pushing myself to spend more time walking and bending the effected knee. But, by the end of the day, it really hurts and I wonder if it will be for any good. I have worked my entire life to be a good ICU nurse (got my CCRN, got tons of experience in various places and specialties doing agency, am graduating in December with my BSN and was going to go into the nurse practitioner program, but is that a pipe dream now)? I bounce back and forth between "I'm going to be one of those lucky ones and do anything I can to change this" to "My life is destroyed and why put myself through the pain if this is chronic and will always be my disability." No doc will give you an answer as to chances. I swear, they know a prognosis for Ebola, but not this! I'm frustrated and have been calling all of my past contacts for some clue as it seems my PMR currently is without the balls to tell me the truth (if he even knows.)
Thanks to all who have been answering me. This crap isn't for cowards, but the support sure helps!
Lori Lee

Hi Lori Lee
Unfortunately there is just no way to predict whether you will be lucky enough to have a remission or not. Nobody can answer this question for you. It is one of the tough features of this diagnosis that you have to find a way to come to terms with the total uncertainty of your prognosis.

All you can do is work as hard as you can on your rehab activity (as you currently are) and try to come to terms with the diagnosis. All the uncertainty and fear that you have is completely normal - you wouldn't be nornal if you didn't feel like that! WFor now you should simply concentrate on getting through each day - it sounds trite but it is an excellent coping strategy. Eventually as you recover, you will realise that you need more from life than just surviving from day to day. Then you can start to think about some of these other bigger issues and questions. You will lurch along from feeling OK to total panic for a while - it is just part of the normal process of coping so accept it and don't waste energy fighting it.

You need to find your own way to be able to accept the diagnosis along with its inherent uncertainty and move forward in as positive a way as possible. Consider seeking counselling or assistance from a psychologist. I didn't go down that route because it wasn't for me - I was determined to do it all on my own (which I successfully did). There is every possibility that you will be able to resume your job but you may have to wait a bit longer before you will know whether it is possible. I have managed to go back to work full-time as a commercial lawyer (4 months after my diagnosis) despite having significant CRPS related physical disability (I can barely walk now so I use crutches and a wheelchair) and a great deal of pain (which seems to be spreading to all 4 limbs). To some extent it depends on getting a decent drug regime in place, suitable emotional and practical support and the rest is up to you - you need to be incredibly determined and positive but it is a great distraction from the pain if you can manage it.

Good luck.

I am so sorry that you must endure this pain. I have said this many times, though I know it is NO consolation "But, you are in good company!" You will find much support here and people who really care. I hate to be a habitual advocate of HBOT, but there are a few of us who find amazing results in this form of treatment. I truly believe that if HBOT was administered on site of injury, as it is for professional athletes, many of us would not be where we are today. I know of a manufacturer of HBO Chambers. They make portable HBO Chambers, that go to athletes when they are injured. I think you can still have a good quality life and not give up your career. For me it requires, planning, exceptions, concessions and HBOT on a regular basis.
I also have some writings of a man that passed this year on RSD and HBOT if you would like I will send them to you. (Heres to you Vic, may you rest in peace!)
Please NEVER give up hope! My doctors said " you are resisting the fact that you have RSD". Each year when I ask "what is new, what is everyone doing for treatment?" I get...no one is doing more than you! So I have to advocate on my own behalf and I do exactly what it takes for me to get by and still be more than reasonably satisfied with my results! I live my life each day to my standards and I am thankful for the progress I have made. If you have read my posts, you know I have a home chamber. I know that not everyone can do this. When I first went to Canada, I sold my car, a white convertible Jaguar. Never yet too be replaced. I had forty dives in a HBO chamber and my results were amazing. I have had many dives since and although it is not a cure for me, my life has moved from the bed to the depths of the ocean. Anything is possible. You will move through this phase and on to the newer phases, as nothing, for sure, stays the same. Look forward with hope. Lots of love and prayers Diana