New to RSD- my story
I slipped and fell on the floor and injured my right arm at work back in April of 2012 at work that's a workers comp case. It took a long time to finally have diagnostics done and finally it was realized that I had a slap tear and my bicep tendon was torn. I finally had the surgery November 2012 and they cut my bicep tendon and relocated into my humerus along with repairing my labral tear and performing a subacromial decompression.
I had a huge amount of pain after the surgery during my recovery which I thought was probably because it took so long to have the surgery itself. I was wearing a sling on and off for months before the surgery so my muscle mass was hardly there so I thought that's why I was in so much pain after my procedure. The pain continued when I started therapy 6 weeks later which was so excruciating. I cried every time I went to therapy. I thought I was just being a baby but it hurt really really bad. My fingertips were numb and when I went to the doctor he thought maybe I just had carpal tunnel since I was in a sling for so long.
I started to notice I had extra hair growth on my arm and shoulder, really dark hair. I asked the therapist about it and they just stated that maybe I had some nerve damage from the surgery or nerve stress that was causing the hair growth. I was not doing well in therapy. I just wasn't progressing as much as I should of and I couldn't extend my arm out completely at the elbow and the pain was still so intensely high. I finally saw my ortho dr again and first he gave me a steroid inj in my shoulder which was excruciating. After that increased my horrible pain I followed up with him and he said that I possibly had something called RSD and that I needed to see a pain specialist to have nerve blocks to rule RSD out. I have never heard of RSD before so when I googled it I was shocked to read what RSD was. While I was reading the symptoms I was noticed that I had so many of them-the rash on my hand, the abnormal sweating, the burning pain, smashing pain, hair growth. I tried amitrypyline, lyrica, and neurotin, neurotin being the one with the least grueling side effects, although they all suck and don't help completely, so pain meds are a necessity.
When I finally saw a pain specialist which once again took a long time being a workers comp case, he started with some sympathetic nerve blocks. I had a total of five nerve blocks, 4 stellate and one in my shoulder, but none of them worked for long, less than a week and one made my hand rash go away.
There was so much time in between my blocks and my pain was just increasing. I constantly felt like someone was smashing my bones, my hyper sensitivity was so high that I just constantly felt like I had a sunburn. This made me extremely sensitive to being around people. I didn't want anyone to bump my arm or touch my arm. I also have random electrical shocks that last anywhere from 5-10 seconds, which make me stop breathing because they are so painful.
Since the blocks didn't work my pain specialist recommended putting in a scs, trying first with the trial. I just felt like this was a very invasive procedure and it seemed odd to be going from the blocks to a scs without trying other treatments first. I had spoken to others that had a scs and they still took all the meds I was on and some the scs made their RSD spread. We had gone down to a RSD seminar that talked about a lot of other types of treatment, there are many that don't work but at least there's some to try that are less invasive then the stimulator.
I am in so much pain all the time and it seems like there was no one there to help me. Sometimes I will have moments when I think I'm doing better and then bam, nope, there's the pain. Then I found out that my primary care physician dropped me due to my chronic pain case so now I have to find a new primary care physician that's within my workers comp network. After over a month of trying to get a new primary, they finally get me set up with a dr who has lost his license in other stated due to serious issues. He's not supposed to examine a women without someone in the room because of the legal issues, but of course he didn't do that and I didn't know that when I saw him.
He talked about different procedures that didn't sound familiar to me and although he was nice I decided to set up an appt to see my pain specialist again to talk about the different things this guy discussed, (ie radio frequency nerve ablation). When I showed up at my pain specialist appointment they told me that the doctor would no longer see me because I saw the other primary doctor. Since the primary that workers comp set me up with was also a pain specialist my old doctor dropped me, (fyi I don't get any medications- pain meds or nerve meds from my pain specialist). I explained to them that I didn't want the primary doctor to treat me that he was just supposed to be my primary doctor but that didn't matter to them. Now I no longer have the one dr that knew a little about RSD.
I finally decided to hire a lawyer hoping that would help to get workers comp to get me to see a specialist who actually knew a lot about RSD but its only been a couple weeks and nothing has really happened except everything is now out of my control.
I am still in physical therapy but nothing is helping. We were doing very minimal stuff since everything seems to aggravate it. We've tried mirror therapy, biofeedback, etc, just trying to desensitize, but now it has spread to my left arm and head, neck.
Being in pain all the time makes your life so stressful. On top of the fact I'm dealing with workers comp and not being able to see a doctor that can treat me I can hardly sleep at all. The pain is so much worse at night which makes it unbearable to sleep in my bed and get in any comfortable position. They say that stress makes it worse so what are you supposed to do when you can't see the doctor you need to see and nothing is working to help minimize the pain.
I feel so out of control and so tired of being in pain all the time. I feel because it is a workers comp case I can't get the treatment I deserve and my health is going to be damage forever because of this. I have always been an independent person and always very active in the gym and outside and now I can barely clean the dishes and have to speak into my tablet to type this, but then have to try and edit it because the speak app sucks so this has taken me hours when something like this for work would take me 15 minutes.
When people look at me they don't see anything wrong with me, they don't see the pain I'm feeling non stop. I miss the body I used to have, I don't like this fatigued, painful body that runs my every move.
I had back surgery over 10 years ago and I figured out what works for my back. I know now that if I do certain things my back will hurt so I don't do them. But RSD doesn't work that way. It does whatever it wants to do and there's no real rhyme or reason to how it works and when the pain is going to come on. That is what I think is the most difficult part of having RSD is the not knowing. Not knowing if there's a cure, not knowing when the pain is going to come on, not knowing if a treatment going to work at all, just the constant getting your hopes up for something that doesn't work. I would just rather have a set idea as to what to expect knowing that, okay, if I do this it is going to hurt so I'm not going to do it. This way you can go about living your life and knowing what to expect when you do certain things, not having to deal with the constant painful reminder of the incurable, destructive disorder.
I know that I have not had this disorder for that long so maybe that is the reason why I haven't found a certain routine and dealing with it but right now I'm just at my wits end. One minute I'm okay the next minute I am bawling and the next minute screaming because I am so completely frustrated. Frustrated with my pain, frustrated with the lack of care that I have had with my doctors, frustrated with my lawyer and just not having anyone in my corner fighting for me. I'm the only one fighting for myself and I physically just can't do it on my own, I just can't. I know the stress of trying to fight for myself is making my disorder worse so I can't do that. I need to finally rely on other people. I need to finally let go of control and let people help me.
Hopefully my next message will be letting people know that I have finally seen a doctor who is able to treat me and I'm getting better and I'm happier in my situation. I know that there's not a cure for RSD and probably won't be one in my lifetime, but I am determined to find a way to live my life happily with this disorder. I am hoping these words of encouragement are sinking into my body as I speak them because I absolutely need this encouragement because all too often the pain just takes over and doesn't allow me to be happy and have the strength to fight this. More often than not I am an angry frustrated person and I don't want to be that person. I want to go back to being who I was before- the happy person who goes to work everyday, multitasks with ease and not battle with the meds messing with my memory and basic ability to function as a great employee, can go to the gym and be physically happy as well as emotionally without worries of pain, can deal with the everyday stresses and struggles without having episodes, and in the end of the day doesn't have constant battle of dealing with RSD.
Thank you for listening and I hope to hear from others who are in the same situation or were, and have found a way through the workers comp system to find the treatment needed to fight this battle.