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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#21 | ||
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Hi Vivid
![]() Great news about your work, it must feel lovely to be wanted back, even if things have changed so much for you. At least you have the choice now. Crocs are great aren't they? I wear mine in the house to keep my feet warmer now this cooler weather is here. Once my feet get cold they always fire up in the early evening and give me hell for a few hours! I'm glad you have PT still - are you going to be seeing the same guy? I know you got on well with him before the last traumatic appointment, but if you are seeing him still, make sure you keep vigilant about what treatments and exercises he tries, and if something doesn't feel right say so immediately so that he doesn't aggravate things. If necessary you can ask for a different therapist, but hopefully it won't come to that. I'm the same re opiates. I have made the decision to take the pain over the side-effects and the effects they have on my mind and personality. For now. I hope I never have to go down that route, but some days I do get tempted to do anything to rein in the pain ![]() Good luck with workers comp - I only know about what I've read on this site, but I know things will be tough in that process, so stay strong and keep notes of any conversations or appointments you have. I use a recording app on my phone when I go to appointments - it's amazing how much detail you can forget from a conversation, and I find it so useful to be able to go back and listen to what the doc/therapist/whoever really said, rather than what I think they said. Take care of yourself and good luck with everything. It'll get easier. Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: | vividDC (09-09-2013) |
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#22 | |||
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I am SO in touch with the title of this thread! I am hurting so bad in so many places it’s insane, or going to make me insane. Every step or movement is so difficult and such a struggle right now. I feel like EVERY SINGLE ASPECT of my life is suffering. More and more things just slipping through my fingers, sometimes literally. And somehow I am suppose to get comfortable with that notion. Zen Vrae... Zen... Wide Open Spaces.... yeah that's it... right?
I am going to turn 45 y/o in just a couple of weeks and I feel like I should have 80+ candles, or perhaps it’s dog years lol. I have reached out to my best friend and informed my husband that feel like it or not, we’re going out and I am dressing up, makeup, hair and all and we’re going to dinner and to hear some live blues. I told my friend that enough drugs and drinks and I should be good to go for a few hours.. lol. Really I want to push myself to do it because I fear how much longer I will actually be able to walk without all sorts of assistive devices. I want to try and enjoy myself and the company of those I love, as long as they’re down for the music. Good music sets my soul free and helps me forget the pain. Honestly I’m not a big drinker, but I feel at least a glass of wine or two will be in order! OH! and fun fact: Crocs originated in Denver, selling in small kiosk's in the mall, then the blew up across the nation and sounds like internationally as well. There is just no better shoe for me. My shoe of choice! Not the most stylish things, but I'm WAY beyond that. |
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"Thanks for this!" says: | vividDC (09-12-2013) |
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#23 | ||
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Senior Member
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Crocs rule! I couldn't be without mine lol - althought am distressed today because I managed to step in some muck yesterday and they are waiting outside for a good scrubbing!
I'm going for cat years (only 3 per human year lol). Still puts me at 126 ![]() Vivid, i hope you are having a decent day, and Vrae, keep smiling girl... ![]() Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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#24 | |||
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"Thanks for this!" says: | Brambledog (09-11-2013) |
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#25 | ||
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![]() ![]() ![]() ![]() I am sooooooooooooo getting a pair of those ![]() Tank-oo (lol) Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: | Vrae (09-11-2013) |
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#26 | |||
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[QUOTE=Vrae;1013801]I am SO in touch with the title of this thread! I am hurting so bad in so many places it’s insane, or going to make me insane. Every step or movement is so difficult and such a struggle right now. I feel like EVERY SINGLE ASPECT of my life is suffering. More and more things just slipping through my fingers, sometimes literally. And somehow I am suppose to get comfortable with that notion. Zen Vrae... Zen... Wide Open Spaces.... yeah that's it... right?
I sure do understand that feeling! Except you should feel good you're 9 years younger than me! No, but seriously this stuff really wears you down! I think it's a great idea to go out! We did that this last Saturday and ![]() I think we SHOULD try to enjoy what we can!, we never what life throws at us next anyway but more true for us. |
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"Thanks for this!" says: | Vrae (09-11-2013) |
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#27 | |||
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My CRPS is my left arm and hand so my nerve blocks are through the neck area. I remember being just so TERRIFIED to have that done, especially since the first Dr. did not know what he was doing & hit my arteries, caused too much bleeding and botched the whole thing! I UNDERSTAND YOUR FEAR! I researched and found another Dr. who uses Ultrasound guidance in addition to just the flouroscopy (X-ray) and she has been successful. i have 13 of them now about every 2 weeks. The first 3 were the most dramatic. I don't know if that was because since that was before I hit the 6 month mark of having CRPS or what. Maybe the subsequent ones act as more of a booster? Maybe if the block goes into the spinal nerves you'll have better success than directly into the area that's so painful! I know it's so scary that ANY proceedure can cause this to spread. Oh, for what it's worth I'm told to take lots of Vitamin C before proceedure for prevention. ![]() |
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"Thanks for this!" says: | vividDC (09-12-2013) |
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#28 | |||
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They're the most wonderful thing ever! ![]() |
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"Thanks for this!" says: | Brambledog (09-12-2013) |
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#29 | ||
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I can relate so much to your case..but bc I have it in my shoulder/arm, (and now in my feet), I am going to just copy and paste my first message on this site, since I did the same thing you did in my first post and wrote my whole situation to help explain my constant frustration. A lot more has changed since I first wrote but I can write that later... WC and RSD I feel are a horrible mix. Nothing adds more stress than dealing with WC, and stress makes RSD worse-a vicious cycle. I feel as though I am at battle with everyone-WC, my lawyer, my pride, emotions, extreme life change, my health, and the RSD itself. I don't have an answer for you and I'm sorry I can't write more right now since its hard for me to type at all, (thank u for voice to text apps) ![]() ![]() "I slipped and fell on the floor and injured my right arm-at work. I finally had surgery months later and after much painful physical therapy and they cut my bicep tendon and relocated it 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." |
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"Thanks for this!" says: | vividDC (09-12-2013) |
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#30 | |||
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![]() Just had to share! Nanc ![]() |
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"Thanks for this!" says: | Brambledog (09-12-2013) |
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