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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Old 11-07-2013, 12:00 AM #1
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Angry I Want To Scream!

If I hear one more person or doctor tell me oh you would feel better if you just exercised more and lost weight, I think I will SCREAM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!

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Old 11-07-2013, 12:04 AM #2
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Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Old 11-07-2013, 12:06 AM #3
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RSD and people who don't understand RSD SUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
OH YEAH, And my life SUCKS because RSD and people who don't understand RSD SUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Old 11-07-2013, 12:50 AM #4
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Sorry you are feeling bad! I was actually going to post about weight gain and exercise tonight.

I am lucky my doctors don't say things like that to me.
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Old 11-07-2013, 01:51 AM #5
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Default exercise doesn't make RSD pain go away

Much like the the dreaded "it's all in your head" line, I think all (or at least most) of us who were at all overweight before or became sedentary after the development of our pain issues have heard some variation of the "you would feel so much better if you just got more exercise" line.

Have you been tempted to stress your body out even more by pushing your body even harder so you could lose weight JUST so that you could tell that doc to stuff it ? BTDT !

If it would make you feel any better, tell that doc a story about your online pal who DID exercise more, who DID lose a lot of weight.......and who STILL has the same severe RSD pain. Better yet, have the schmuck doc call me for a little "chat" and I'll tell him all about the PROOF that his little plan (which we all know is just to cover for the fact that he doesn't have an actual reasonable treatment plan for you) DOES NOT WORK.

You might also remind said dear doctor that your difficulty with proceeding with his plan is that your severe pain is what is preventing you from exercising more. Challenge HIM. If he wants you to exercise for an hour a day, tell him that you'll be HAPPY to, just as soon as he brings your pain level down to a 0 or 1/10 for 24 hours so that you can sleep and feel comfortable enough to get out there. Make the commitment, promise him for each day he eliminates your pain that you vow to get out there and exercise. I'll bet that'll shut him up

I spent years hoping that I could magically lose weight and exercise more, so that I could tell the physiatrist that WC sent me too where he could "stick" his opinions and advice.

In the years since, I found a doc who has a clue and has tried to help me manage my pain, although WC denials have limited what treatments that we can do. At least he addressed my pain management needs and helped me get to a place where I felt I had SOME control. Last year, my mother was dx'd with Parkinson's and dementia after a fall and lengthy rehab. Years ago, she used to joke that she didn't need long term care insurance; she said she had "paid" for something better......a nursing degree for her eldest daughter (me), so she should get all the care she needed. That wasn't a bad plan....until I got broken The night after her back surgery, she asked for me to promise that I would try to keep her out of a nursing home. Once upon a time, my plan would have been for her to move in with me, or me with her, but I would manage most of her care myself. Unfortunately, she was asking this of the RSD me, who couldn't bathe myself or manage my own ADL's and household......How was I supposed to do for her what I couldn't even do for myself ?

The same month my mother was hospitalized, I had several important doctor appointments. I talked to each of them about my concerns for my mom.....and my need to get MORE control over my pain issues and increase my activity tolerance. My ortho who gave me steroid injections for my bilat. hip bursitis (related to my fibro). My shrink changed my antidepressant. My neuro MARKEDLY increased my narcotics. My rheumy eventually put me back on an anti-inflammatory and has helped to address my energy levels. All of them worked to get me to the point where I could get out and start moving. Walking has been my thing. I've tried to "upgrade" that to running, but that caused worsening RSD neck/arm pain and caused significant issues with my "itises" from fibro: I couldn't run and limped with walking from new plantar fasciitis and had worsening bilat hip bursitis and bilat knee tendonitis. Any kind of bouncing or dancing type cardio also seems to worsen the "itises" and is HORRENDOUS on my neck/arm RSD pain. I can now do some stretching, but haven't done well with attempts at weight lifting. Walking is my thing.

Over a year and a hundred pounds lost later, I can tell you that I do indeed feel better..... IF I take a lot of narcotics. If I don't take the meds, the RSD pain is there, worse than ever.

Tell your doc that I'm waiting for my pain to magically get better because of exercise.
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Old 11-07-2013, 03:52 AM #6
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Quote:
Originally Posted by finz View Post
Have you been tempted to stress your body out even more by pushing your body even harder so you could lose weight

Indeed I have, and it was an EPIC fail! This was a fantastic post and man oh man can I identify.

And Renee, I'm so sorry. Hang in there girl. What was said to you by this doc was completely ignorant.
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Old 11-07-2013, 04:10 AM #7
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I think finz hit the nail very firmly on the head here. Couldn't agree more, and very elegantly put

Renee, I'm sorry you have your burden added to by such poorly-thought-out ignorance and lack of compassion. Sounds like you could maybe think about trying a new doc, or you could express to him how you feel about what he says. I used to suffer dreadfully from White-coat Syndrome, and just agreed with everything they said (still can if I'm feeling very low ). I learnt the hard way that they're not always right, and in fact quite often are poorly informed, and can do real long-lasting harm. I wish I'd stood up for myself more before...sigh... It's a hard thing to do though. There never seems to be an easy answer for us does there?

I hope things feel easier soon for you. Try a bit of pampering chick - some nice music, nice smells, self-massage (very soothing) and something altogether pleasant to eat and drink De-stressing and feeling even a tiny bit more in control should help a little bit. I'm on to it myself today after a rough few days... I felt the need to push myself and claw something back and braved the outdoors alone yesterday - I took the dog for a short walk around the block. It was scary but felt good (in a way, not in terms of pain of course ). But of course last night and today I am paying for it ten times over. I'm going to try it again though. I'm fed up with so much loss.

Hark at me. Lol. Take care of yourselves and keep being who you are, whatever size that might be

Bram.
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Old 11-07-2013, 08:11 AM #8
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Hi all at a recent visit to pain clinic the doc asked me if I had put any weight on since I had this dreaded crps.

I said yes about a stone up to now and I think it's due to picking during the day and not working.

The doc said they recommended a low carb diet something like the Atkins diet as it was something to do with the meds I was on and Not over eating. But they never mentioned anything about reducing pain through it just might make me fell better in myself.

I'm not really overweight just a bit of a beer belly. My physio has me on exercise bikes and massage but no where near my crps just to help circulation and self esteem.

They have all said to me they can't cure me but hope to keep me where I'm at and no further spread of this beast I only have it both hands and slight arm I type this with my thumbs it's great exercise.

I'm not meaning to rant on about myself just trying to show the difference between a good understanding pain team and not so good as yours sounds like.

I would most definitely look for a better doc who understands this crps.


Hope your having a better day take care
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Old 11-07-2013, 08:12 AM #9
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I really hate ignorant doctors and want to scream at them and other ignorant people when they say things like this. I see it all the time...hear people comment about people using scooters who "look fine but are just too fat and lazy to walk around." Makes me want to slap them...they have NO IDEA what any other person might be going through.

When you have terrible, awful pain it naturally leads to a more sedentary lifestyle. Even for me who still works full time at a job where I am on my feet a lot...I spend a LOT more of my life sitting, resting, recovering, trying to build up the courage to do it all again tomorrow, etc. I've gained 30 lbs since I got this stupid condition and I just don't have enough in me to work it off. And why should I put myself through that sort of misery trying? My focus is on my quality of life overall...I know my limits and do my best to live within those limits. I feel guilty enough and frustrated about all the things I used to be able to do that I can't now...what right do other people have to make me feel more guilty than I already do?

Ugh...you focus on yourself and what you know you need. Scream as much as you need and vent as much as you want...we have to get these frustrations out somehow. Only someone with this condition can REALLY understand what you are going through and what a difficult thing it is to live with. I have come to terms with this and while those other people who say stupid, ignorant things frustrate me to no end...I just try to remind myself that they don't matter to me...they are nothing in my world. And when DOCTORS say those sorts of things...I leave and find a new one because how can they help me if they are so clueless and ignorant?
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Old 11-07-2013, 11:24 AM #10
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Sorry you are feeling so frustrated Renee! I am also right there with you. I have had so many people say similar things to me. "I bet if you exercised you would feel better". How in the heck can I? I have this crap all over my body. Taking a walk?? it is in my feet, left leg and spreading to the right. Then there is the question, "have you tried swimming?" Well, no not recently...I have this in my hands, shoulders and left arm...also have transportation issues. UGH!

I have gained and lost and gained and lost weight...there is no impact on my pain. It might make me feel better about myself, but not better pain wise.

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