Hello, new here.
 

I slipped and fell on the floor and injured my right arm. I finally had the surgery and 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 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.

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.

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.

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.

Hello cozyc
 

Welcome to Neuro Talk. I am sorry to hear you have CRPS. I do know what it is. I have a milder issue with PN. Before you agree to the SCS, which does help alot of people. Ask your doctor if he has heard of Ketamine infusions. There are a few hospitals that do this proceedure. Remission has been obtained with some of our injured troops. Tampa Bay Hospital in my state does these. I have read quite a few articles from JAMA a medical journal, that talks about this type of treatment. Many doctors don't know about it just yet. I hope you find a good therapy that takes that hard edge away. I had the electric shocks with my bad spine, and I sure know help was needed for that. I did have several Ketamine infusions to my cervical spine. The treatment helped. However I had structural problems with my neck that had to be fixed. Just a thought as you go forward with your plans. I wish you all the best. ginnie

I am so sad reading your story...it reminds me so much of mine. My RSD resulted from a work injury and I had terrible battles with work comp and got bounced around from one doc to the next until by chance I landed with a doctor who diagnosed my RSD and started treatment.

If your battle is anything like mine then you have a rough road ahead of you but rather than scare you with those details I will tell you that I am much better now. Not cured or in remission...but my life is much better now. I was so bad that I couldn't work, I was in a wheelchair, I couldn't walk or stand at all, I wasn't sleeping...life was just a misery. But now I am back to working full time, walk with a walker, and I am SO happy. Seriously...the pain is there every second of every day...but I have taken my life back and I am so grateful now for everything I have and everything I can do.

I know things seem crazy now like there is no rhyme or reason to your pain flares...but over time you will figure out what your triggers are and how to work around them. It helped me a lot to keep a daily journal where I tracked my pain level along with my daily activities, how long I slept, what meds I took at what times, what I ate, weather that day, etc. I've had to change a lot of things in my life like what I eat and what I wear. I have to sit and rest but balance that with being up and moving. I have tried lots of different meds and treatments. I've done LOTS of physical therapy (which takes a long time BTW but it did help me loads...the key was doing the exercises EVERY day).

You will find your way. Keep a journal and figure out what causes flares and what eases them. Go to doctor's appointments prepared with lists of symptoms, your journal, and any questions or things you want to go over with the doctor. If you have anyone to go with you that can sometimes help with the doctors as they will be on their best behavior when they have witnesses. If you hear about any treatments that interest you...bring that information in with you to the doctor and ask them about it. You cannot demand any particular treatment from your doctor but you can discuss it and maybe open the door to some options the doctor had not considered before. Unfortunately there are not many doctors who REALLY know about RSD and how to treat it. My best doctor was one that I could really have a partnership with. She had ideas about how to treat my symptoms and so did I and between the two of us we got all of the symptoms that were keeping me from functioning under control.

On the work comp front all I can tell you is that you need to work with an attorney and if you can find one who has worked cases with RSD then so much the better. They can do a lot for you on the treatment front if they are good...they can push work comp to approve treatments or to change doctors if necessary. They will know the rules in your particular state (because they are all different and you need to be careful that you follow them) and can advise you on what to do or not do. They are there to help you. If you don't feel your attorney is helping you or they don't answer calls or emails then change attorneys. Don't worry...attorney's are capped at how much they can get from your case and you will definitely get more from your case with an attorney than without one (and I don't just mean money but treatments and stuff like that too). Insurance companies will lie to you and mistreat you if you don't have representation...it's a sad fact but I have experienced it first hand.

Take care and if you have any questions, please ask. I have gotten so much help here while on my own journey with RSD...I hope you can find that sort of help here. Things can and will get better...stay positive and optimistic if you can. We all have bad days but things will get better.

It sure does..

Hi Cozyc, thanks for sharing your story. Your story is the song of RSD/CRPS that so many of us know all too well. It sounds like you have been doing all that you can to try and work through the trials of doctors, lawyers, therapy and a med combo that will work for you. And at the end of the day, when you’ve done all that you can, rest on that. We have a saying around our house when we look at a pile of dirty dishes, laundry, bills, etc. that need doing; thank God there’s always tomorrow. :rolleyes:

I was very much a; I’ll do that myself, kind of gal and still try to be as much as I am able, but after almost 10 years of this horrible condition I have learned that we all need each other, and I am forced now to ask for help. That has got to be one of the worst aspects about CRPS for me. My mind says we’re going to do this, and this and that, and my body says your nuts! Even if I attempt to achieve the this and that, my body will soon scream; did you not hear me the first time?? I still wrestle with when to stop when trying to be superwoman. There is a fine line between doing and doing too much.

Grieving for my former self has also been a journey. One that is getting better with time, but a journey that is not completely over. As the disease continues to progress there always seems to be yet even more adjustments to be made to my to do list. It’s hard not to get mad and cry over what has been taken from you. But I’m learning that in the end, the emotional instability only makes for more painful days. Again, I am still working on reconciling this in my mind. It’s far easier said than done.

I have not had to deal with workers comp, but I can tell you that finding the right docs and med combo (because the meds too always seem to need adjusting for one reason or another) is horrendous at best with or without WC. Finding a doc who will actually listen and respond accordingly… I am still working to find this combination. So sorry that you seemed to have had a doc you liked and now can no longer see him/her. That is devastating for sure.

I recently got some very sexy leg braces. It was the first time that I had an outward signal to others that something was amiss with me. I can remember being in the ER once and telling the triage nurse, if you could look inside and see what I feel, everyone here would freak out! It is VERY frustrating that it is invisible and silent to others, while inside you’re screaming. I find that if I start to tell someone ALL the things I feel, as I’m listening to myself say the words, I know they must be thinking; wow she’s a hypochondriac. If they only knew how very real ALL this CRPS stuff really is.

I too had back surgery. Discectomy L5 S1 and awoke from surgery with CRPS II. That day changed my life forever.

I wish I had some magic words of wisdom that would make this better for you. All I know to say is don’t give up. You’ve found a really great site with lots of us here going through the same thing. I personally find comfort in that. In knowing I have a place to go to chat with others who truly get it, and try to learn from their experiences and advice.

I hope you’re feeling better soon hon! xx :hug:

Sincere welcome :hug: I pretty much echo what everyone else shared here.
Mine is not workman's comp issue but the other aspects of your ordeal are far too familiar. I'm so sorry you have to experience this. I have found that it is so hard for those with out this disease to fully understand. That is only part of the reason this group is so great.
So many other diseases have cures or at least specific treatments - I feel that we need the medical community to recognize RSD/CRPS better.
Anyway the support here is great.

Thank you so much for all of your replies! Every one of you touched me in some with way with your words and sharing of your stories. I know some of you said you wish you had something to say to help me but trust me, just sharing your story helped me so much .

I hope that things start happening soon. Every day I feel so fatigued from my neurotin and other pain meds and I'm sure from the RSD itself. I feel that I am getting worse and worse-not just in the upper extremities but from the fatigue of the meds-since I have to take more because the RSD has spread and the new areas of pain are not what I'm used to and can tolerate.

The comment about doing the dishes and cleaning the house is so true. I feel so frustrated that I can't just get up and do those things.

Thank you again for all of you awesome responses . I really truly appreciate them so much.

I will keep you guys updated and hope you all are feeling a little less painful today.

Brain fog
 

I don't know if any of you else feel this way from the neurotin or maybe from the RSD but I feel like I can't get things from my brain to out I of my mouth or on paper. Sometimes I know a word I'm trying to say but I can't speak it and wen it comes to writing a response on here, there are so many more things I wanted to say in my last response but I can't focus enough to really articulate it. I wanted to respond to more specific things that you guys said but if I tried to I back and look at them I would get lost in my train of thought. Besides the fact that since my RSD is in my upper extremities, that typing in general is much more difficult. Using my iphone in small amounts is the easiest by far.

Do any of you have these issues? I have heard about how bad the neurotin is for your brain long term and I would like to not be on it anymore but I need to see another doctor to get into another med. I had first started on amitryptyline-which didn't help at all, then lyrica-which made me feel constantly hung over, and then neurotin. It was really bad at first because I was really dizzy and tired all the time but it helped the most with the pain. I then would try to go on and off of it because I hated being so tired and in a brain fog. I would be ok for two days and felt mentally normal but then the pain would creep up and then be consistently unbearable and I would take it again. Now I can't go back a couple of hours of my dose time without being in bad pain.

My pain is always at its worse at night and when I wake in the morning my whole body is so heavy. The morning feeling is new but I think it's connected to me consistently taking my neurotin now. I'm always in a fog, I sound like a druggie and tend to mumble more. I fumble on words maybe 5 times a day sayings, "um um" , trying to get the word out-and then I just give up.

Can anyone else relate to this?

Thank you :)

To echo the others who have responded, I too am sorry you have had to take this journey. My experience has been similar, except my pain (luckily) has been relatively mild - still able to work and do my "activities of daily living." But similar in terms of delay diagnosis, nerve blocks, neurontin etc. I also only recently joined this board.

I started neurontin a month or so ago, and found that coffee in the am has helped a lot with the fogginess at work. I had given up coffee as part of my new years weight loss resolution (Because of the cream, which I don't like coffee without) but started back up after going on the neurontin.

Don't know if this helps you, and some others have said people with RSD/Crps should stay away from caffeine, but I need to be sharper at work, so I am taking the risk. Plus, between the nerve blocks and neurontin, I've been sleeping better lately anyway.

oh yes I can totally relate. I'm not sure how much of it is CRPS and how much is the Neurontin. Either way it sucks.