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 Not that I don't have the odd naughty day lol, or little 'sod it' moment .

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.

Actually I was pretty impressed with your 3 postings. And if it made you feel better......good.

You said and EXPRESSED what I (and others) feel so many times.

I don't have RSD.....mine is SFN but I still understand.

Take care of yourself.

Debi from Georgia

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.

Hey RENEE........I hope u didn't take what I said wrong. I was telling u I have SFN because I really don't know what RSD's go through and I wanted u to know that. I felt included in your posts

What I was really wanting to say about your 3 posts was that.......I Loovvved it !
YOU GO GIRL !!!!

But I was trying to word it differently because the others were truly giving good advise but I just wanted to respond to your original posts

Hope everyone wakes up today feeling a little better than yesterday !

Debi from Georgia

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.

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.