Reflex Sympathetic Dystrophy (RSD)

[livingwith]

In 2000, I got a flu shot for my job. I have a college education and worked for the Mental Health program in our county for years. Immediately following the flu shot, I had the worst case of the flu I ever had. Within two days I could not raise my right arm. My scapula winged and I had horrible pain the shoulder and scapula area near the spine. My neurologist diagnosed the RSD within months of the shot. The problem is every doctor I see thinks the answer are their new drugs. Neurotin star...Read the full article

[JLOH 001]

Thank you for posting this...reading through the posts on this site it is clear that we are all in similar situations with our lives deteriorating by the minute and each day is another challenge to get through. The truth is that there is no cure for this condition...the medical community does not have sufficient knowledge of chronic pain and pain management other than the let's try this one approach. The condition goes against all the healing processes and healing behaviors we've learned over our life time. You cut your self and it heals up. You break a bone and it heals up. Every other illness or injury you experience through life heals - this one just doesn't. I watched my uncle's wife - just a few years older than me - who had RSD in her back from a car accident several years ago - and all of this was before my inciting injury occurred... she dissolved into a sea of prescription bottles and got swallowed up by drugs and pain - she developed a cardiac condition (I still swear it was from all the drugs) and died on the operating table at 54 years old. I'm 53 now and when I was told I had this d*** condition, I just sat and cried. As one's world disintegrates piece by piece, and we run from doctor to doctor to doctor to treatment to treatment to pharmacy to treatment and back to doctor to doctor, there is no relief that is long-term or permanent and we find we are grateful for any amount of time where the intensity of the horrific pain is even reduced. I'll take reduced! I'll take temporary! I'd call that relief addiction but I guess it's ok to be a relief addict as long as it doesn't cost the medical, insurance or pharmaceutical industries anything....so we go looking for it where ever it can be found!!!
I agree that there is good research going on and it's great that some of the younger people who suffer with this gawdawlful condition - I can't imagine having this demon at a young age - are being successfully treated but there is no one answer for us - not yet - not now...I can only imagine what it is like for you with children to care for...you are in my thoughts and prayers that you can find some peace and some relief.
When I was preparing my Social Security application - denied of course, I'm on the first reconsideration process now - the amount of information that was required - when I already have issues with concentrating, focusing, recall - that I had myself so upset I could barely breathe...all of the documentation and records on how many doctors I've seen and what and when treatments and medications were given and the results of tests, x-rays, mri's, cat scans, bone scans - are all located with the workers comp insurance company but I don't have access to those records. I can't get the information they require because those records don't belong to me. I have to have a lawyer involved with this and they need to be paid...along with the rent - I lost my mortgage early in 2006 and had to sell my home of twenty plus years - elelctric, gas, car insurance, food and, you know, just the basics one thinks they need....The abuse of insurance and program scammers is what has caused all of those who are in true need - those with actual real medical conditions - to be afflicted and further eradicated, diminished, discounted, papoohed, and pishawed, financially devastated, and left in shambles by these systems. This is where my anger boils over and I want to scream! I am so angry that every one of these applications requires that you own a copier and fax machine! I wonder where these offices think the dollars to pay for copies and postage comes from????
I slipped on the steps and work and fell - the injury to my right foot is where my RSD developed. My employer accused me of wasting insurance money on accupuncture treatments since he thought that was a "snake-oil" approach to my imaginary disorder. I put up with over two years of nasty negative comments at work while I was trying to find a way to get this condition under control and work full time. I finally gave up and went out on w/c disability two years ago. Now these fabulous people terminated my employment and have demanded that I pay for my employee health insurance and now I'm looking at having to give up the only apartment I could find to live in since I'm on workers' comp income only. Am I supposed to go out now and find another job that I may or may not be able to keep and make this injury care another employer's responsibility? The insanity truly boggles the mind. I've worn out my family members and friends with the never ending requests for help and money and my constant state of neediness. I despise living like this. This is not who I am or who I believe I can be. I haven't found a way to get there yet....The addition of depression and anxiety disorder, along with no real sleep pattern, is not a joyous state. The world of disabling conditions is not a friendly or pleasant place to be. Find some music in your head to help your heart and just try to endure for one more minute each time you feel like you can't...breathe and hang in and hang on...you are not alone!

[cinhopper]

I am so sorry this has happened to you or anyone for that matter. I have had RSD for 16 years, and after going through all their treatments nothing works and I mean nothing. I am on oxycontin, which is a narcotic and I'm in so much d*** pain that sometimes I cant think straight. I have told many professionals, that if it were't for my children and grand children, I would check out of this life. I"m hoping their is someone in your life that you love and care about, and although you feel hopeless, and I do too, we can't give in to this condition. I understand everything you say about the pain, I have the same symptoms. The only one that is left out of most peoples discription of pain is that my fingernails hurt, it feels like someone is stepping on them. However, I just wanted to touch base with you and let you know that narcotics does not work either. Hang in there, you'll be in my prayers.

[JLOH 001]

Bless you for enduring for this long period of time and thank you for posting...I'm glad that your family is a source of strength for you and I understand your point with the meds and hanging on....it's difficult to help people understand how maddening this pain can be even with the treatments and medications and gadgets and widgets...I watch people's faces when I tell them there is a blow torch aimed directly on top of my foot - it's there 24/7 and never goes away - I try to explain how it has spread on my foot and up my leg and how socks, shoes, pants, socks or pantyhose (AHHH!!) and sheets, shower water, shaving my legs, towels or the cats wanting to curl up on my lap or if I miscalculate my step and bump into something - all makes me shoot to the ceiling...I watch faces of people I've known for years when they see me walking with a cane and some of these folks only see the cane now and not me...some people just avoid eye contact and walk away....so I've become a foot and a cane and I find myself struggling to prove I'm still me...the d*** beast engulfs a life...I give out information and send people to websites I've found in hope that they will understand - the butyoudon'tlooksick.com with the spoon theory I thought was excellent - but most people didn't get it...I do understand about your nails hurting - my little toe nails keep falling off but no one knows why...and that's my point...no one knows...I see a cold front is moving thru this area with rain and cooler temps - that means I'll be sedated and out until it passes and I can move around again...I used to love the autumn season and was always out and about with my cameras or at the beach walking in the sand and enjoying the quiet of wind and water...now I dread the cooler air and being trapped in the house...I pray that we all find peace in our hearts and minds as we go on the best we can today and wait to see what tomorrow brings for us.

[cinhopper]

After I read my posting to you I realized I didn't say that the rsd is in both arms right up into my shoulders and up the sides of my neck. I get migrains from muscle spasms. My friends don't get it at all. I have swelling in all my fingers and wrists, but they see two good arms. They ask, what am I complaining about, it could be worse, there are other people worse off, do you think maybe your just trying to get attention? I can hear what your thinking, nice friends ah! I now try to avoid these people and feel very isolated. All I can say is thank god for family. My family tell me how helpless they feel because they can't make it better, and that is where your dad is coming from. He has done somthing illegal because he loves you and feels helpless. My husband would do anything to stop the pain. I sleep 3 to 4 hours a night and wake up with extreme pain. I feel sometimes life is passing me by. During the 16 years I've had this condition it has gone into remission twice, and I've been able to go back to work. This last relapse has been 5 years. It's impossible to work and wsib has been working we me, not against me. I'm sorry if it sounds like I'm jumping around topics, but it's 3 in the morning and it takes me a long time to write down my thoughts. Prayers all around and keep smiling!

[mshianmighty66]

I have read your posts, and the replies, and let me tell you, they left me in tears. I have had RSD for two years and NO_ONE understands or even wants to understand how this feels. The RSD is due to a broken ankle and now I walk with a cane. My greatest fear is that I think I am developing this condition in my other foot. Often I feel I am an embarassment to my family. I have twin boys who are 13 and I wonder how I am going to get through raising them and taking care of their needs.
Even though we are no alone with this condition, it is really no relief knowing that others are suffering with it also. Maybe venting our frustrations here, helps a bit.
I have tried spinal blocks and meds, neither worked. The pain specialist I saw did the two blocks and refuses to do the spinal cord stimulator because the blocks proved no change. So this is my life, here on out. Shoes, socks, and weather are my enemies.
You are so right, people don't see me anymore, just the cane. I have strugled with weight all of my life, being 20 or so pounds over weight, and now because I am so inactive, I am now 50 pounds over weight, and this depresses me even more. I can't stand when someone says to me "there are people worse off", this too doesn't help. I know that there are people worse off and I feel for them, but that doesn't help my situation.
God sent me the twins at my ripe age of 46, and I felt blessed, now I wonder why or how I am to handle this and them also. I try to hide a lot of what I feel for their sake. But I can't help and wonder if they someday will be embarassed by their mother, looking older, overweight, and walking with a cane. I dread their graduation and wedding day when I have to be present. I would like to crawl under a rock and stay there till it is my time to pass. My husband and I do very little together anymore.
I miss the walks on the beach during vacations (can't walk on sand) or the trips in our antique cars. I feel alone most of the time, until I came into this sight and then I feel somekind of mutual kinship with strangers. I wish there were local support groups, but I have yet to find one.
I have never felt so hopeless. I was always a very strong willed person and nothing stood in my way.I am finally defeated and by something so stupid as a simple broken ankle and what followed.
Don't get me wrong, I do have blessings in my life, MY TWIN BOYS. So there is something to be thankful for.
I will keep you in my thoughts and prayers.

[JLOH 001]

I also found out some of the medications will cause weight gain...I had just lost 77 pounds a year before I was injured and have now put back on 64 of those...so we say it's about twenty for the inactivity, twenty for the meds and twenty from hanging out with teenagers in my family and eating pizza...there are many people I've known who don't understand this monster...and then there are those who know, after 4 1/2 years of this, when I'm having good and bad days...I'm thankful for the blessing of people who care....you aren't an embarrassment or strain on your real friends and family...my sister tells me that it is frustrating for her not to be able to help...but her 13 year old son was in a motocross bike accident last year and broke his neck and is a tetrapledge now (he can't use his arms, legs, and has no trunk control) and she was my major support system until this happened...my nephew is doing well and has the best attitude and he keeps me from going to my own pity parties most days...it's hard to talk about my foot and leg being in pain and not working right when this kid is in a power wheelchair...as tragic as this incident has been, we have all been drawn to help each other and take this one day at a time...I get annoyed with most everything but tryin to plan a trip or an outing and never knowing if I'll be able to move around is so frustrating for me...I find that I still resist letting this damnable rsd take over all of my world...I have a good friend who reminds me that none of us are promised tomorrow so today is all we have...so I get up each day and try to make the best of the day and do what I can...somedays I do pretty well in my new limited lifestyle and some days it's pure agony to make a meal and get back in bed...my two cats however, insist that I feed them and will not allow me to ignore that responsibility....I'm still feeling my way around this new miniature universe that I landed in so I'm still learning...I find ways to do what I have to and figure out if I really need or have to do the rest of it...the me of today is not even a simple shadow of the me of yesterday...but I'm still here and I'm glad that you who visit and post are one the journey with me...thank you!

[RSDJ]

I'm sorry you have to go through this pain, and on top of that, through the system, that doesn't always work. I went through so many doctors,before one of them could figure out what it was. But there is hope...

I know its difficult to find an RSD Specialist. I suggest,(since you went all the way to Cooperstown, NY)that if you are ever in the NYC area, there is a Pain Doctor who is very good. His name is Dr. Ronald Kaplan. He is with Beth Israel Medical Center. (Phillips Ambulatory Center(PACC). He is very knowledgeable when it comes to RSD. Nothing is guaranteed, but I think he is a good doctor. Look it up on the internet.

More doctors are becoming aware of RSD. But for us RSD people, we need Pain Specialists who understand what RSD is and how to treat it, and to acknowledge that every individual is different. What you need is a good Pain Specialist.

You and your father are taking a big risk. So if you can get to a good Pain Specialist, that may help you.

Also, RE: SSD: Mostly everybody gets turned down the first time you apply. I hired a lawyer specializing with SSI/SSDI. Its a very long process, but try to be patient. Maybe you can call a lawyer who can come to you, if you can't get out due to the pain. Keep all your medical records, keep a pain journal. I know its difficult to function in all the pain. Try to do what you can do, but don't overdo it.

[JLOH 001]

I'm curious to know what remission is like? What happens or stops when you arrive at remission and why do you believe that happened or what may have initiated it for you?
How do you manage with this pain in your arms, neck and hands? I have instances where I start to believe the spread is into my left foot as well but it's not constant...I keep wondering what life will be like in five, ten, fifteen years....night time and not sleeping don't help my anxiety levels...I'm glad I discovered this site to post on...I'm not trying to complain, just writing it down...
I found a great chart on the chronic pain website - it's a quality of life scale - like the pain scale and I'm passing it on to the medicals I see in hope that it will become a relative source for tracking the debilitating effects of stimuli like cold weather, physical demand, etc...
The social security system is a total nightmare and I'm horrified that older people have to maneuver around that complex for their benefits! I'm sure the demand on the system was never anticipated and certainly hasn't been maintained well over the years...What is with the "usual" "common" "customary" practice to deny a disability claim on the first submission? I don't know of any medical condition that improves with the amount of additional stress this process imposes!!! I do have an attorney to work with through this but he's distant and not very compassionate...I may expect too much from him...
but it adds to the frustration....
hope all are resting and looking ahead to a better day tomorrow. Thanks for all your info, help and prayers!

[ewrace]

I also have muscle spasms.They told me that it is from not sleeping.The muscles do not get a chance to rest.That is when I insisted going back on clonazapam.They had taken me of it but my doctor listens to me and it does help.Maybe ask about it.Also it sound like we are living parallel lives.I am willing to give you my email and number if you want to talk further.
Wendy