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, 11:24 AM #11
RSD ME RSD ME is offline
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I see the stress in my husbands eyes sometimes too Vrae. It makes me feel so guilty. He never wants to tell me he's stressed because he doesn't want me to get upset, so he tries to carry the brunt of everything by himself like my illness, his diabetes, medical bills, college tuition, etc. He drives me to every dr appt, since I don't drive anymore, even when it's in NY. He works a full time job and several part time jobs and in between them he drives me to drs appts and the pharmay to pick up prescriptions. He will take me out to local restaurants to get me out a little to lift my spirits. He was one of the people who said maybe loosing weight and exercising more would help ease the pain of rsd. He knows it won't take the pain away, but he knows rsd attacks my weak areas which are mainly my hands and feet. I know he was just trying to help. My pm dr though told me the last two times I saw him, to exercise more, when I told him the rsd was spreading to my feet and my other hand and wrist. I felt like he was trying to help, but also felt that my dr could have offered more options to contain the spread. He didn't and when I see him next week I will talk to him about this.
I know it's hard Vrae to see the stress on your husband, but try not to feel guilty. Bram is right. For better or worse and it's not your fault that this happened to you. I know I feel guilty too sometimes, but know I would do the same for him if this situation was reversed. It's also hard on the kids too, I know, but families are with us to help each other through the hard times and it sounds like that's exactly what yours is doing for you. You are very lucky. I am lucky too to have such a supportive husband and son. I feel bad because I flew off the handle last night when my husband and brother both suggested exercise and loosing weight. I know they meant well, and I am trying to walk more. It does help a little. I just didn't feel that great and took it the wrong way. I do have to say though, when a cancer patient says they don't feel well, to people tell them to exercise and loose weight? Maybe I'm wrong, but I don't think so. Anyway, hope you have a better day today everyone. From your fat out of shape menopausal rsd friend, Renee.
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Old 11-07-2013, 11:34 AM #12
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Thanks Tessa!

GERD/PUD: Me either, but I guess it will be my new homework / research project. Thank you so much for the advice on gastroparesis! I know what you’re saying is true and yet as I am reading it and I am thinking that I have a LOT of work to do to change my eating habits. After last night it’s pretty much in my face that I have to make some changes. It was really painful and still feels swollen in that area to me. It’s all weird.

lol.. more homework is all you needed to add to your "to do" list :/ Gosh it would be so much easier if life got easier with this but, sadly it just seems to become more complicated and that never ending list doubles in length almost instantly! Damn I sure wish my name was Tabitha and I could twinkle my nose Keep your perspective and focus on small changes. Doing to much at once will invariably overwhelm and distress you.

May I ask, why no fluids with meals? No salad and no raw veggies? … well damn. I will miss those!

Adding fluids during meals expands the entire contents making it even harder for the stomach to expel it. A few sips if you must is okay but remember the total volume of your intake at any given time should be small (for me the 1/2 cup.. for you it might be more/less). The bonus is that most people don't chew there food long enough and tend to 'wash it down' instead as we get into such a hurry with life and even with food. Leaving out the liquids usually improves digestion because we naturally chew longer.

Lettuce and many veggies have high cellulose and insoluble fiber which is very hard on the digestive tract for those suffering with GI issues. Insoluble fiber makes and already 'slow digestive tract' slow down even more because your feeding it things that take longer to digest even for a healthy person.. thus doubling the problem. You may find later (when you get things more under control) that a seldom small salad here and there is okay or worth a little discomfort to satisfy the desire to eat it. Right now though I would forgo any raw salads until you figure out what works and pain is under control. Cooked veggies (preferably steamed) that help in many ways are carrots, squash, pumpkin, sweet potato, cauliflower. Pickled vegetables are great because they are actually pre-digested through the fermenting process and are much easier on our stomachs. A tablespoon or pumpkin or mashed sweet potatoes are an amazing way to quell stomach pain and increase vital nutrients.. you won't find a pot of soup, smoothie or even a cup of yogurt without one of the two added around my house!



I love to cook. Of course it is becoming a chore more than pleasure anymore, and now in many more ways than one. We have such a large family still at home that I tend to try and cook things that stretch. It’s become such a hassle with my guts that I have been just avoiding eating and then eating one meal a day, and maybe a snack along the way through my day. This wouldn’t be good if I had no stomach issues.

Yay! I also enjoy cooking but understand the feeling of it being a chore or a burden due to pain and diet restrictions. Although I no longer have children living at home my husband can eat enough for 4! Thankfully, he isn't picky and often sacrifices his own pleasures for my comfort.. it is a give and take for both of us for sure.

I’m sure that you can relate when I say that the days take on a life of their own and making, taking time for me, is some days next to impossible. I have so many lifestyle changes that MUST be made. I feel like I am going in s-l-o-w motion while drowning in my “to do” list. The kids, the husband, our business, his job, school for everyone, my father in law, the house, the animals, this damn virus … oh and my disease(s), now plural I guess.

Oh how I can relate!! Lifestyle changes = new adventure and personal discovery.. that is how I make the changes sound fun When you feel like you are drowning.. do like I do and call in a "life line" aka.. code word for "the rest of the listwill have to wait or love of my life.. please lend a hand I'm sinking

Without any doubt I am truly blessed to have this wonderful, wonderful man in my life. My partner, my lover, my best friend, my confidante. We have had a magical love affair that has lasted over a decade. I can’t even imagine life without him. With that said, I feel like I am wearing him down. I can see the extra stress on him coming from so many directions and it frankly aggravates me beyond measure that I am a part of that additional stress. <sigh>

Thank you for the kind words about my father in law. My husband and his brother are going to visit him during Thanksgiving. I am hoping they can make a few more good memories during what will be such a tough time for all of them.

It is never easy.. ever.

Thanks again to you and the others for your response. You guys are the best! I’m off to try and have a much better day and see what I can knock off of that list of mine. VR
sending productivity and less pain vibes your way.. ^^**^^**^^*********** catch it
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Old 11-07-2013, 01:03 PM #13
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Default A little funny..

Just a little humor
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Old 11-07-2013, 01:49 PM #14
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I believe my CRPS started in my gallbladder after having it removed. There were no gallstones, it just stopped working. They found out through a HIDA scan that it was only working 10%.

I couldn't eat for 5 years other than broth, potatoes & noodles etc. Pretty much a fat free, very bland diet. It took me going to Mayo to find out what was wrong & was put on Lyrica & Cymbalta. I am kind of an "expert" in this area & if you have any questions Vrae, I will be happy to answer them!

I am sorry you have to deal with this on top of everything else!

Melissa
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Old 11-08-2013, 02:24 AM #15
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I am by myself and think well hell, I'm going to die in paradise.. lol. .


bwahahahaha !

At least you still have your (warped, but AWESOME !) sense of humor !

Seriously, that's scary, hon. In the future, No soup for you!
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 11-08-2013, 05:12 AM #16
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I agree finz Vrae, listen to finz 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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Old 11-09-2013, 09:37 PM #17
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Default Priceless!

You all are so wonderful! You make me laugh, give me good advice and things to ponder. Thank you for that!

I over did it on knocking things of the household chore list. So far, two days in bed recovering. Looking at my work feeling like I actually accomplished something ... priceless!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 11-10-2013, 12:58 AM #18
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Sheesh! I am by myself and think well hell, I'm going to die in paradise.. lol.
LOL! That's a good one

I love Paradise Cafe, but it got me too once! I was experimenting with taking some herbal drug and I sat there and got hotter and hotter, and sipped ice water, then stuck my hand in the ice water glass, then took an ice cube and rubbed it on my head, then finally decided to try to get home and collapsed outside of the door. They called the paramedics and I had to go to the emergency room. But I still love to go there - great place!
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