I can't seem to write much at the moment in regards to the story behind my RSD and I am not sure anyone would really want to read about it anyway. My hands are sore to type and my mind is foggy...stumbled in here tonight hoping to meet someone to talk to about this horrible disease and also offer my experiences with nearly every drug and treatment available. It's been 9 years since my fall and 4 since diagnosis and sometimes it seems like I have had too many medical traumas to function normally. I am only 22 and I can barely walk...my dreams have been crushed more times than I can count and too many people that I thought were friends and family have hurt me...even when I don't talk about my pain and try to act as normally as possible. I can't seem to find just one person who will listen and I am so lonely it hurts. Many healthy people don't seem to realize how RSD can effect every single part of your life...and now that all of my doctors have given up on me I feel lost. No more treatments or options are available to me and I cry every day wondering what I did wrong. I was 13 when I fell and I am now 22...I never had a chance to get started. I live below the poverty line and I have no way to rise above it. I used to try to change my life but I have been beaten down too many times. I have no idea what to do tomorrow, or the next day let alone the rest of my life with RSD. I am barely able to get through each day without the small hope that lies in the search for pain relief...which is over. I suppose talking about it with people who understand is all I have...I just don't have anyone that I can do this with. I am so scared of constantly being alone while this disease continues to get worse.

First off...I want to say that I am very, very sorry to hear about everything that you have gone through. RSD is never an "easy" thing to deal with but to do so without the support of friends and family makes it even harder.

Second...I am very glad that you found neurotalk. There are so many wonderful people here and we all understand what it is like to live with this monster. We all have different experiences...but at the same time they are all the same in that we all can relate to the major effects that this beast has on our lives. I don't know what I would have done if I had not found this site shortly after I was first diagnosed.

I am terribly sorry to hear that you feel like you don't have any more options. I don't know the details of everything that you have tried but I would imagine that in 9 years it feels like you have tried everything. Or is it just that you have tried everything that you can afford? Either way...just remember that there are always new things coming out, new treatments to try, and I always look at it like there is no cure for RSD...YET.

That said...this site is an excellent resource to find out things that people do to make it through each day...many of which cost very little. Sometimes those little tricks and treatments can be the difference between surviving this condition and LIVING with it. Don't get me wrong...I have yet to find anything that made a HUGE difference in the pain besides physical therapy and tDCS...but I have found that if you can find a bunch of things that help the pain a little that this can make a big difference.

So feel free to ask questions, vent, think out loud (so to speak) and just share with us here. You can always PM me if you want to talk but I think you will be surprised at just how helpful and supportive the people on this forum can be. You are not alone...we are all here for you.

Great advice and know you are not alone. It is a wierd and lonely road sometimes.
Please know however, God has a plan for you and time will reveal and cancel out all the bad days. You have come to a good place. Ask questions and know that you count in this world. Know you are not alone.
Being poor is another sad side of this and many illnesses. Poor in spirit is up to us.
Talk soon and prayers going your way.
I wrote to you before I found this. New and just learning my way around this site.
If 21 years of RSD has taught me anything it is, Don't give up and dig deep inside yourself to find hidden passions that will help you open up to your miracle.
You have found one now; other RSD folks.
God bless you and keep you strong. Peace & LUV, Andrea

Thank you both very much

The feeling of not having anymore options is mostly related to doctors constantly telling me that there is nothing more out there so often that I now carry that hopeless feeling around with me. Also I have been through so much I am not sure if another kind of treatment came up I would even have the energy to go through with it. Hospitals are traumatic for me and I wish I didn't have to see the inside of another one for a long while...but I have a neurologist appointment soon and I find myself scared about either response. Telling me to go home and live with it or telling me about a possible treatment that requires surgery. I will come back and write more when I am not so suddenly tired.

If there is one thing my sister-in-law, Terri, has shown me time and again, it is her constant Never Give Up cheer in determining not to be beat down by the RSD/CRPS which has taken her from a 5foot 10inch pretty lady to something shy of 4 feet as her legs were taken when they became gangrenous after the onset of her DX years ago. Her life is now very much a product of coping with the benefit of a coctail of morphines and derivatives which are consumed in doses so highly prescribed now one would think them life threatening....

She wears a smile every time I am able to make it over to visit her as she speaks to me of painting cheery shirts for oncology patients in the local hospital whom she visits so as to take the dominance of pain in her life and turn it for help of others. This I share because she has asked me to share time and again in order that others who cannot understand the "Why" or "Why me" may be able to reach inside themselves for discovery of a means to be able to reach out to help others. She, I am sure, is why in my own pain scenario, I found my self resorting to reaching out in outreach to others because so much good and blessing is to be found in the sharing of myself with others.

I really get that you are living at or below the poverty line, a line well known to Terri, and also known to me when the horrific pain of car wreck injuries ripped career straight from my hands as though career was a thing onto which I could hold. I hope you may have at least Social Security Disabiltiy benefits which may help at the very least subsistence. I know this well, for it is what became both of Terri and me when we realized we could not earn money, and the benefits do help, while the Medicare part of the picture is helpful with the medical pieces.

Being in treatment, although Terri was not able to return to a self supporting career [she is both a chef and an artist] she turned her brushes to bringing smiles to other patients. Me? Well, after many many procedures, I finally had a semblance of Humpty Dumpty back together again so I could resume practice of my profession once more. I hope to be able to go off of SSDI soon because I will have proven to Social Security I can earn a wage again.

Others on these pages have gone on to finish school and take up teaching, or return to office work, things which could be done without a lot of aggravating physical challenges which would make the CRPS worse. I share thise thoughts with you so you may see there are possibilities out here and some may even be doable for you. Among the most positive things I have found in myself is an inward search for the blessings I do have in my life, for I found in recognizing those blessings, I could move myself beyond the fearsome place of depression in the grasp of which I found myself. Now my life is in part a daily recognition of blessings and stiving to help others find blessings in their lives as well.

I pray for you Elsie that life becomes light for you,
that needed means to sustain your living situation in a good way are discovered,
that through this place you find as I did, friends await to reach out and give you virtual hugs,
and that in all things you will ultimately find things to be well with you,
Mark56zzzzzzzz

You've sure found a great place for support and understanding.
Please know that you are not alone. My heart truly goes out to you, especially the part about the lack of support from family and friends. It's absolutely devestating I know. Chances are they've never even heard of RSD. It's probably one of the loneliest conditions there is. If it weren't for forums like this, I would have turned into a complete recluse by now, convinced that nobody cared.
You're among many who do, tho. This is the place to be to gain the inner strength needed to stay above this. Sharing your frustrations here will certainly be 'heard' and understood. Our families do care about us, it's just that in many cases they don't know what to 'do' for us. It's frustrating for them as well.
Once you start making friends here and seeing that there IS hope and that there ARE options and things that can be done to help combat this, you'll feel much better about things. We all need each other's support and it's important that we hang on to hope.
There are other people here who are your age, so just hang in there. Friends are on the way!

Caring,
Rae

Mark, thank you for telling me about Terri. Her life has been very difficult but how she carries on is very inspiring. Hearing about other people's pain and experiences always gives me a better perspective. About the only thing I still enjoy doing which takes my mind of the pain is writing...I just wish I could find a way to help myself and others with it. I have depression that can get quite bad and it takes a toll on my writing...even while I usually enjoy spending time on it I struggle with remembering words and how to write properly...I also lose my train of thought and repeat myself...and I am consantly discouraging myself. I suppose it's just one of those things that will always be a personal battle. I am still trying to find ways to lessen the strain from writing during flare ups. Overall I would like to thank you for the stories and the encouraging words.

Rae, your post means a lot to me and I can't really say how much! Thank you so very much for taking the time to reassure me I am in the right place

First off, Welcome, i have found so many helpful people through this site, and a lot of info, and i hope you will too!

As for being only 22, I can relate, i am 21, i didnt have it at a young age, but my life was just getting started when this took over. I have learned to find things i can do, and to focus on those more than the things i cant do.. which is not always easy. I am sorry to hear you dont have anyone to talk to, but im here if you need someone. The few friends that i still have dont realize what i go through everyday, and dont understand why i cant go out whenever i want, or didnt make it to church, or what ever it may be. I have just accepted that they wont understand.

I am currently searching for a doctor who wont give up on me too, and i have only been dealing with this for a short while compared to you, but i have faith i will find a doctor who will be able to help me.

I also am a writer(i have to type it left handed due to my rsd, ive yet to accomplish writing left handed..) , and i read a lot.

I hope you get some relief of some kind soon, and have a peaceful night of sleep. I know sleep can be hard too.

If you need someone to talk im here, pm me.

Hi Elsie,

Welcome to NT !

Stories like your's, or any young person grappling with RSD, really get to me. It always hits home for me that as discouraging as my situation seems, at least I got to do some of the fun things of young adulthood.....like college, travel, the bar scene, getting married , and having kids BEFORE the RSD monster hit.

I'm sorry that you are in such a tough spot right now. Feeling like you have no support makes any situation feel more dire. I'm sorry that your family and friends have not been there for you. Know that there are others who "get" it. And many of us are right here !

It really concerns me that you say docs you've seen are now only saying "We can't do anything" or "Sugery is the only option." Without knowing your whole history, it seems difficult to believe they have exhausted EVERY option. There are many treatments that I haven't been able to access/undergo.....because WC denies treatment, but there are plenty out there I'd LIKE to try. It just sounds like your docs have given up on you.....or aren't thatknowledgable about the newer treatment options out there.

What have you tried ?

Thank you for the messages. I realize that by saying I have tried everything it does not sound completely realistic...but out of everything accessible to me this is true. I go into a doctor now and after explaning myself I get told...always...that there is nothing left...not because there is nothing available out there but because I don't have any money...even the $20 I spend a month on sleeping pills isn't easy for me to spare and that is all I have to fight this. It's insane to expect that of me. Who here with 10 or more years of brutally painful RSD is currently on completely nothing? It's close to everywere on my body but my right leg and they expect me to just deal with it. They dangle hope in front of my face...forced minutes later to snatch it away and make excuses. Some doctors have actually been embarassed about this and others are just cold...I am not worth the extra effort to them. I wonder why they became doctors in the first place. There are some medications that I have not even come close to having since they are impossible for me to afford both now and in the future. I never graduated because of this disease...I have nothing and I never will because I can't work. I want to work so much but I just can't. I hear about some drugs that work wonders for other people with RSD but they are too damn expensive...one actually ended up costing more than my rent...and I will never know if they could have helped me. I am limited to 'free' medicine that the government considers 'essential'...anti-depressant anti-convulsant etc. The list isn't very long and they are all mostly geared towards pain that isn't chronic or other recognized conditions completely inrelated to RSD. I have had painkillers that you can only have while you are in a hospital...simply because they knew I couldn't afford anything at a drugstore or clinic and the disease was spreading too fast. Now even that small kindness has been put to a permanent stop and I am going downhill again. Good strong painkillers that I can take from home apparently don't fall into the reasoning of the government...even when it's so bad it can barely get out of bed. I am 'too young' and therefore anything that is a narcotic is fiercely denied to me completely based on my age group and the assumption that because of my age I will get addicted. I have no quality of life and that is somehow better to them then some control over the pain that has wrecked my life. I thought about posting a list of everything I have been on for help in filling in the gaps of treatment options from this community...but honestly it would upset me too much and my mind just isn't working right now to make such a list. I am sure there would be some wonderful suggestions and it would help me to remember the drug and treatment names that have slipped my mind over the years but I can't really handle right now the crushing feeling of seeing all the things that could help...many that I have known about for years in front of my in print while knowing that when I walk into another doctors office with that same list in hand I will walk out crying. I don't know what to do...or what I am asking for here. Maybe some treatment procedures? I have had epidurals, ketamine, lidocaine, nerve blocks but nothing recent and nothing scheduled in future. I just want the pain to go down. It's too much to handle.