Reflex Sympathetic Dystrophy (RSD)

[denise29929]

Okay, this is my story. I am 46 years old, been suffering from RSD since May 18, 2005. I was originally injured at my job (workman's comp. joys), the original injury was painful but if I would have known then what I know now, I would have gladly lived with it. I first went to a dr. that didn't want to act at all, didn't listen, didn't care. Then I changed to a dr. that was cut, cut, cut. Apparently that is when the RSD jumped in. We believe (unproved of course) that the first surgery caused the RSD. I got worse after the first one so the dr. decided to operate again. I have been on crutches since that day December 4, 2006. My RSD began in my right knee. Now I experience pains in the left knee, left foot, and lower back so far. I feel that I have gone through every medication and every procedure. I have had the blocks, spinal colomn stimulator, pain killers, anti-depressants, physical therapy etc. My depression got so bad that Workman's Comp. has sent me to a phycologist, I go once a week and have been going for a couple of years now. A couple of months ago, my shrink found me a new dr. She had to harass W. C. and also beg the dr. to take on another W. C. patient. She is pretty much the only thing that holds me together. She calls here and there to make things happen for me (I am shy and don't take up for myself much). I hired a lawyer 2 years after the accident to look out for my best interest, he doesn't do much, just wants that settlement. The previous dr. I was using (the one after the cutter) was extremely useless, she gave up on me way too soon. I am not ready to throw in the towel yet. Of course the lawyer was extatic, settlement coming. Well, when my shrink got me the new dr. that pretty much killed that settlement subject for right now. I was in a relationship for 12 years, once the pain got so intense I had no interest in sex, the pain kinda wipped out the thoughts, not to mention, how the heck am I suppose to enjoy anything that causes my pain to get worse. Well, as you can guess, he is gone. I was an extremely active person prior to all of this, now I can't even walk 5 steps without the pain level going so high I don't want to move another. Okay, so take 5 steps, rest, take 5 steps, nope....standing in one spot hurts just as much as the stepping. K now, factor in a 16 year old boy. Life has gotten alittle better since he got his license, I have not been able to drive my car for a year now. My son has been diagnosed bi polar, can't help but feel that my situation has caused his disorder. I haven't been able to take him places and do things with him for years. He used to compete in Jui Jit su, going to tournaments almost weekly. I grinned a bared it for as long as I could possible bare it, but the time came that I couldn't take him or go myself. I have lost seeing things, doing things that I can never re capture. And now is where I want to complain about the 80 lbs that I have gained since the original injury. Does this disease not affect any part of our life? Oh yeah, forgot to tell you that the job I had when I got injured was working for the state of SC, good job with great benefits. The drs. put me out of work with no idea as to whether I would return or not. My job help my position for a year but then terminated me. I was lucky enough to have enough time (13 years) and the fact that I had been injured at work, to qualify me for medical retirement. Oh great, so I am maybe not as financially strapped as others, but I have no LIFE!!!!! I am sure you figured out by now that I go to a shrink because I am constantly suicidal. But so far, not attempted. Okay, that is alittle of what my life has been through since the injury. Now I want to talk alittle about my symptoms: The left knee hurts at all times, burning, stabbing, shooting pains 24/7. The only thing that makes it subside alittle is submerging it in warm water. I live in the upstairs of my family home, 16 stairs to my bedroom. Wonderful for my right knee (not), but increasing and increasing pain in my left knee because I climb using the left, I use a crutch on the right side keeping the pressure off my right leg, all to the benefit of speeding up the deteriation of my left knee. Sharp pains on the lower outside of the left knee with every step now. Trying to hurry the dr. up to order an mri of that knee to see what is going on. I have not worn anything that touches either of my knees for years now. Even the slightest touch causing so much pain it would make a rock scream. Now with my left foot joining the club, I have not been able to wear socks for years, I have to wear special shoes that do not have any material covering the top of the foot. It swells to almost twice it's size at times. I usually sleep for an hour, awake for 2, sleep for an hour, and so on, most of the night and all day if I allow. Laying in bed is so uncomfortable. Sitting is so uncomfortable. Standing is so uncomfortable. What a LIFE!!! If allowed I would keep on typing and typing so I will bring this to an end. Thank you all so much for giving me a place to vent. Good Luck To All. Denise

[reruho]

Denise,
I am very sorry you have had such bad luck with doctors. It sounds like your psychologist is a keeper and really looking out for you.

Please don't blame yourself for your son being bipolar, your situation did not cause this. Unfortunately, it was the luck of the draw for your son. Your son would have become bipolar even if your were still in the best of health.

Is there a way that you could move downstairs? The stairs are not helping your condition. Is there a way that you could get one of those chair lifts installed?

I wish I had some magic words of comfort that would make things better. My offer is to listen, to be there if you want to share a good moment or to vent about your day. I will keep you in my prayers. I am wishing you a low pain day and sending you <<gentle hugs>>.
Reta

[denise29929]

Thank you so very much Reta, it's so nice to finally feel that I have alittle support with this disease. Unfortunately, downstairs is not a possibility. My dr. wrote a script for a chair lift for the stairs but now that has to go all through the channels at workman's comp. Thank you again for lending me your ears, I am here for you also, anytime. Been going through this all alone, no support. Denise

[reruho]

I can not imagine the loneliness that many with this disease felt before the internet. There are days when I know no one around me understands what is happening to me. I have been lucky because they have not too many of them. My husband tries but he doesn't always understand.

I hope your chair lift comes through very soon. You must come downstairs in the morning and then be forced to stay downstairs until the evening.

My RSD limb is my left arm. I feel very fortunate because I am right handed. I am still able to do many things that those whose have their lower limbs afflicted can't. I can imagine how difficult it is not to be able to walk. I am a walking fool, it is one way that I am to relieve the stress of this monster. I also have responded very well to treatment. I have had very good pain control this past year, with just some burps like my brother-in-law's death this spring.

I was in a car accident and my injuries were not that bad. I had chipped ulnar, an undisplaced distal radial fracture and some compressure fractures in my hand. My symptoms started 2 weeks after going into a cast. I called the doctor's office and they told me my skin was irritated and to take benadryl and to elevate it for the swelling. I kept saying I can make it 2 weeks longer while I was thinking about what tool to use to cut off. I told the orthopedic surgeon about the burning pain, it was noted but no answer. I was sent to occupational therapy and I complained, it was noted but the answer this time was a pressure injury. Each visit with the OS, I complained and nothing was done. About 10 weeks after the accident I went to see a surgeon about the injury to breast during the accident and I asked him about the pain. He told me to look up RSD and to ask the OS if this could be RSD. This surgeon's son had RSd in his foot from a football injury. That night I found the answer to this craziness that had invaded my life. There on the page was all the symptoms that I thought were unrelated. I had began to doubt my sanity. The next week I saw the OS and asked the question. Yes was his anwer, then he shipped me off to Pain Management. He did increase my OT to 2 to 3 times a week. I had been going to my primary for pain medication because no one else was helping me. My first PM was not very helpful and didn't talk much. He wanted to see me monthly, never offered and type of medication to help with the pain and only prescribed nerve blocks. He never explained anything to me. The first series of 3 were very helpful in that the returning pain was at a lower level. He sent me to a quack of a PT that undid my last nerve block. This quack told me that I did not RSD because I was not swollen or discolored and I had not lost use of my arm. I went to him once, then told my doctor I would not go back and that this guy was practicing medicine without a license. I left this doctor after I had a reaction to valium (petechial hermorrhaging on my legs), I called him and got no response. At my next appointment his reaction was, "Don't take it again." I was so angry that I was physically ill and had to go to bed after the appointment. I shared all this with my lawyer.

My lawyer suggested my 2nd PM and I have been very happy. At the first appointment he offered Lyrica for the burning pain. The lyrica was a nightmare but it was wonderful to have someone to offer some help. I see this PM less and have better pain control with what we have done. I have done another series of blocks and they have been helpful.

I think the early diagnosis at 10 weeks and the intensive OT have gotten me to a good me to a good point. I also think that even though my first PM wasn't so great, he did help. I have had a wonderful Primary that has been taking great care of me and all the associated illnesses resulting from the RSD. I am lucky to have good insurance that has also taken care of me. I am so happy that I do not have to deal with workman's comp.

My pain is higher today than it has been in days but the weather has taken a downturn (rain). I also has my eyes checked today and it took forever for the dilation to wear off, about 9 hours. I think that has contributed to tonight's pain. In fact, I still have a headache.

I hope you are feel a little better tonight. I will keep you in my prayers and send you genle higs and the wish for a low pain day tomorrow.
Reta

[Shianne]

Denise,
my daughter is dx'd with bp at 9 years old although she's had it for years. It actually has brought us closer together.(now that she is properly medicated) she is battling her monster and I am battleing mine. If you think about it the two conditions have a lot of similarities. Wow! I thought I was the only person in the world dealing with this difficult situation. Haveing RSD and parenting a child with bp is more than enough to push someone over the edge but at the same time she keeps me going and she keeps me pushing myself to get out of bed everyday. I can't give up because I know nobody is going to love her the way I do. ~shianne