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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!:mad:

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:hug:

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.

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 :rolleyes:

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 :o 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.

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.

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 :rolleyes:). 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 :winky: 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 :rolleyes:). 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 :winky:

Bram.

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

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?

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.

Nanc
:grouphug:

Renee,

I am sorry your are hurting physically & emotionally!! It saddens me to hear your pain through your posts.. I am hugging you gently from afar.

Please don't take this the wrong way - do you think that maybe the comments weren't solely meant to say that by exercising or losing weight that this would alleviate your pain? Do you think that maybe the comments were said out of compassion in that they see your emotional pain and think that by doing either or that this would boost your mental and emotional self thereby helping you cope wit your pain a little better? Since no one except us can understand the type of pain we are in, it would be difficult for them to fully understand our limitations. I would certainly think it would be much worse for someone to suggest I should sit/lay around all day thinking that would help me? Or.. not suggest anything at all which would indicate lack of concern. The words and comments hurt for sure but in defense of those offering they usually don't say it with ill intentions, instead they are just trying to offer some hope and since exercise and weight loss are a hot topic in today's society it comes to mind quickly for most or would seem to be an obvious first avenue of defense for our ANY ailment. I mean think about it.. if I you came to me today and told me what was going on in your life with you pain, concerns about un-diagnosed issues and I could sense your emotional pain, I could see your physical struggles with say weight or movement .. and I said.. well let me order you a pizza, give you a prozac and told you to stay in bed or resting on the couch - would you be just as frustrated with my comment? At least even with the less than understanding comments they were 'positive' and have potential to make a person feel better in one way or another even if it is just an endorphin boost. If however the person gave the poor advice to sit around, take a pill etc., other than a short term relief from the pill none of the advice would help and in fact in the long run if followed, would surely only complicate the problem further. If no suggestions are made at all.. then it is likely because the people we are around are 'over it'.. that is a sign that the relationship is about to disappear. It is all about how we take the words.. sure the sting.. but think about what response you were looking for. What is your "magic" words? What do you want to hear from others? I love you, I'm here for you, I empathize with you, I am here if you need me.. they are great words but in the long run what are those words helping you achieve or strive for even in the worst of pain?

I saw your post about cancer and exercise/weight loss and wanted to comment. It is strongly advised to cancer patients to exercise and make better food choices. This is not for weight loss or fitness benefits but is for the mental boost and positive emotional empowerment that it gives that person. Along the way the person may lose some weight and will obviously improve fitness but that is the bonus not the primary reason for the action. Mental well being is the MOST IMPORTANT aspect when fighting chronic illness of any kind and is proven over and over again through scientific studies and medical studies. Exercise can be as simple as ankle flexing, isometrics or even filling a jar full of marbles.. it doesn't mean you need to get out and run a marathon or even walk a full mile. A mental exercise can be a crossword puzzle, a puzzle a board game or even watching a TV game and playing along... as long as you are doing something to boost your health through even simple forms of exercise this will help you feel better because you will feel some sense of satisfaction, accomplishment and self worth. Diet.. sheesh we all struggle with weight and diet but, you can attempt to improve diet and weight loss just by cutting back on one small thing. For instance if you like flavored cream in your coffee.. switch to milk with less calories and artificial sweeteners and flavor. Each time you swap you have achieved success which will give you a mental boost and something to be proud of.. keep it simple and always strive for better choices without comparing yourself to others.

Sorry for the rambling.. or if any of that was offensive.

Tessa

Very true Tessa. Feeling better about ourselves in any way at all is a major bonus these days! (I'm not saying this is what anyone should do lol, or making a judgement.) Personally, I eat only the odd square of dark chocolate now instead of at one point eating far too much of the sugary fatty stuff out of sheer misery. Every time I say no or reject a tasty looking bag of crisps, I give myself a little mental slap on the back and a 'well done'. It does boost you. Plus I find that eating less sugar and processed fats is making me feel a bit more alert and less stressed than I was. I can't jog around the block, lift weights or swim (pool is too cold now for my arm, getting out into the cold was torture and undid any benefits...) - but I can eat healthily and feel good about the fact that I'm giving my system a better chance than before :rolleyes: Not that I don't have the odd naughty day lol, or little 'sod it' moment :D.

As I've said so many times, we each do the best we can - and that's different for everybody. But little achievements can feel good too, and when the bigger ones become more unlikely, even a small glow is better than none.

Bram.

Hi Tessa, Thanks for your caring advice. The comment made from my husband and brother were meant to help alleviate the pain not take it away. I just overreacted because I was having a bad pain day and am still recovering from surgical menopause. I was having terrible hot flashes and get very moody. Worse than usual! The comment my pm dr made I think was also to help alleviate the pain, but I felt he doesn't really know much about rsd and that maybe there are more options. Maybe I'm wrong though. My brother has a PhD in child psyhcology and he has delt with several rsd patients and doesn't have alot to offer me either. He and my husband and my pm dr understand, it's just they can't do much at this point for me and it's scary and frustrating. My pm dr said after two years there's not much that can be done except for meds and exercise for rsd.
As for the cancer comment, I didn't mean to come across like exercise doesn't help cancer patients, I just meant that the pain level for non terminal cancer is apparantly lower than rsd pain, so why don't they get the same responses like loosing weight and exercising when there in pain. I should have been more specific. sorry. I just don't think people say that stuff to them, I know I never have. It was just my opinion. I didn't mean to offend anyone who has cancer.

And I agree with you and Bram that it helps to exercise when one can. I lost 35 lbs prior to my rsd on weight watchers and became a lifetime member. Then I got rsd, was put on prednisone and gained 25 lbs back from that and then the rest from being in too much pain because of my rsd and two surgeries to move too much. I'm trying to walk a little each day now, but now my feet are burning as well as my hands and it hurts to walk on them. And I can't even enjoy my chocolate because I feel so naseaus from my stomach problems. Hopefully my endo dr can fix that at least. Anyway, I'm trying to exercise and loose weight and be positive, but I feel like someone is sticking needles in the bottom of my feet and fingers are sore from typing and just want to go to bed right now. It's just a bad pain day for me. It's lousy out and I have a headache too. I'm hoping that this too shall pass, like you've all told me before. And I'm trying not to borrow trouble like Vrae's mom used to say. I just need to wait it out. Sorry again if I offended anyone. I didn't mean too. Thanks for all of your caring and great advice.

Sometimes RENEE....You just have to let it OUT :)
 

Thanks for all of your kind thoughts. I should though have mentioned that my feelings excluded rsd sufferers and other chronic pain sufferers like myself and all of you. I know when you offer advice on exercise, etc. it's because you truly understand. It's the ones that don't know what we are going through that bug me, because I sometimes think that they think the pain we have can just go away if we just move more. It's just not that simple. Maybe that's not what they mean and I overreacted, but that's how I felt at the time. I didn't mean to offend anyone. Thanks again for your support. Hope you have a good day. I can't sleep again so I thought I'd mention this because I forgot to yesterday. Take Care.

Good Morning RENEE....did u ever get to sleep ?
 

Hey Renee,

You didn't need to apologize and you certainly didn't offend me in anyway. My reply to you was out of concern for you. I was just trying help you see that the people who say things that hurt us aren't usually intending to and I was hoping you would see that because it is the only way I can try to help lessen your pain from afar. I agreed and have felt the exact same way as you many times through this and other difficult journey's in life.. I could have chimed in and agreed, rallied with your words but that felt like I might fuel your already hurt feelings so instead I said what was meant to get you to look at it from a different angle.

Please never apologize for posting how you feel or what you are going through!! It was awesome what you wrote because it happens to many of us... I personally just didn't want you stewing by the words spoken any longer because I felt the pain you were in because of it.

:hug:

Sorry for the late reply, sometimes my hand won't cooperate.

Renee, I know, I wanted to scream with you!! I read your post but could not respond right then. Some times we know how we [U]should[U]feel but we just can't make ourselves feel.
I have been on both sides of the emotional fence. Sometimes, I know if I don't power through the pain it will only get worse, or if I don't excercise it it will only become more "cripled", so I do it and force myself through. Other times I will get a brief reprieve for an hour or two and wonder to myself "what's the matter with you that you can't "________________"?
Then the CRPS/RSD Monster will rear it's head and I can barely function whether it be side effects or pain and then add in a comment from someone "isn't your wrist healed by now?" Then we're right back wanted to scream.