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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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#1 | |||
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Magnate
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function like a human being?
I have had some bad days here lately. First due to my depression and I believe it's made worse by the Holidays, then pelvic pain and leg pain. I get one place calmed down and another starts. My daughter is my caregiver. She helps me with housework, runs to get my meds and groceries on her days here. I feel like I donot function like a normal human being. I can't invite people over for a meal because I don't feel I can cook for them. I am a good cook, that's not the problem. I really don't know how to describe the problem. It's just that I don't feel capable of doing the things I use to do, even the simplelist things. Some of my Drs. have described me as being different from normal people and I really don't know if it's the RSD or something else that I have. My PCP wanted me to go to a Dr. in California that he thinks is good to see if they could figure things out but money is a problem for me and just traveling is. He has also mentioned the Mayo Clinic but I haven't heard good about them from people around here that have went there. He thinks this Dr. would be best and I can't remember his name either right now. I'm just wondering, how any of you feel about doing simple task. I'm not saying due to the pain but due to the mental. Thanks for any replies, Ada |
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#2 | ||
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Junior Member
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A simple task is hard for any of us, its not just you. We all have those days. You still are normal, but RSD causes something in us that makes us break. WE cant stop it, YOU cant stop it, but I can help prevent it. So can many other people here. We know what your going through and you can turn to us if you need help. Personally I think if you can, you should go see that doctor, to see what, he/ she has to say. I could be worth it in the long run.
Best wishes and a merry christmas and happy holidays -Jeremy- |
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"Thanks for this!" says: | Mslday (12-24-2009) |
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#3 | ||
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"Thanks for this!" says: | SandyRI (12-28-2009) |
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#4 | ||
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Hi Ada,
This time of year is even more difficult for us when we cant do for others what we use to be able to do. Maybe you could have a simple get together with your friends. Have a tea luncheon. Our friends here on NT are important but we need to keep contact with our friends in real time. Somedays are harder than others. We have to make ourselves stay active and not just allow our RSD to take over parts of life we can control. Talk to your doctor that prescribes your depression medication maybe it needs adjusted. If you are able volunteer a few hours a week. I do at a pre school with my sister. Its just 2 1/2 hours a week. The kids make me laugh and I feel a since of helping and doing for others. I think so many times as suffers of RSD we allow it to have complete control of our life. The pain is so bad that some days I get a book and just sit on the couch and read for the day. We MUST not let it control the things in our life we can control. Talk with your doctor about the depression issues and ask if your meds can be adjusted. Everything about you is normal. We all deal with the changes in our life from our health differently. Don't let RSD define you as a person. We are normal we just have to adjust how and what we do because of our pain. God doesn't make junk the book of Psalm tells us we are wonderfully made and we are his master piece. Trust in the Lord and he will give you peace. Merry Christmas, Sherrie |
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#5 | ||
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The right Dr. along these lines can be a life changer. My personal opinion is that it is usually is a psychologist rather than a psychiatrist. But, because of my Drs. 3 degrees and his life experiences, he is perfect for me. My best friend in Oregon is a counselor-alcohol and drug. We are extremely close, they visit everyother year. Her husband is in nuclear medicine-the kind of test that confirmed my RSD when I was diagnosed. I wasn't diagnosed for 4 years and then misdiagnosed. I flew from Phoenix to Oregon to a orthopedic hand surgeon and he knew in 1 minute what it was and was confirmed by test. That's also were I went thru therapy with the death of my parents. I read about 50 books and was in therapy 1-2-3 times a week forr 2 plus years and lots of seminars, like grief seminars, etc. So what kind of Dr. in California? Take care, loretta |
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#6 | |||
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Hi Ada,
As the others sad, you are 'normal' as far as living with RSD is concerned. Holidays may be especially difficult, even on a healthy bodied person. Memories of what you used to be able to do this time of year haunt you, and the social commercialism of it all makes you feel totally inept. It, too, shall pass. The ebbs and flows of good moments and bad will always be. My husband just snapped at me for yelling at my young boys ( almost 3 and 5 years old), but trying to care for them day in and day out is sooo difficult, I can't help but yell once in awhile. Perhaps, tomorrow will be a better day. We can only hope...... ![]() |
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#7 | ||
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Member
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It's usually so hard to know what exactly is wrong.
For me I think it's usually some type of fear. I'm afraid of the symptoms which strike with no warning. I'm afraid I'll get stuck in traffic. I'm afraid of getting hurt or what will happen in the future. There's so much pain and so much worry in addition to the obvious disabilities. I never worried about anything before and now everything is a big concern. Probably depression is a factor as well as it, too, just causes the wind to fall from one's sails. There's a fear and sense of "what's the use" everytime a big project is contemplated. I do fight it and do as much as possible. There's got to be some way to lick this thing and I'm not ready to give up yet (this particular minute anyway). |
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#8 | |||
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Member
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A year ago I didn't feel human at all. When I have a bad flare it's the same way..I have gone 10 days with minimal pain when WHAM! it hit me like a ton of bricks this afternoon. Coming home from Christmas with the in laws I was in tears and I am sitting here typing to keep my mind off my leg. I am glad that we have this forum to relate our disorder/syndrome to a great bunch of friends. I don't know what I did without you all!
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"Thanks for this!" says: | loretta (12-27-2009), vannafeelbettr (01-02-2010) |
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#9 | |||
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Magnate
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Thanks for the support and answers you gave me.
The day I wrote this was the day I had my car accident. I had just been out of it for a few days. It really wasn't depression, it's just another feeling I have at times that makes me not feel normal. I am on no pain meds nor depression meds. I take Mitformin and Nexium for my stomach. That's it. Med's and I don't mix. Vanna, as you get to feeling better with the RSD you will not yell at the kids so much. I use to be really snappy with Bill and my Grandson's. I am much better with the boys now. They are older though. Your's are at that age where they don't quite understand things. We kept Dustin and Devin 2 to 3 nights a week from the time they were born. I was sick before they were born so boy was it hard to take care of them. Bill helped so much. I use to sat in a rocker and rock them and I was in so much pain that I couldn't really take care of them like I should have. It's good that you have your husband to help because it is very hard for us to do it alone. I do worry about everything like you, Imahotep. My Dr. says I'm the worst about worrying about things. He says leave the worrying over the boys to Susan and Travis. It don't work for me though. Now I have to get my old truck fixed up to drive. I have to find someone to drive me around till I get it done. I hate asking anyone for anything. Life to me doesn't seem normal at times. I try to ajust to what is going on with things but it don't always work. Thanks for the help on this. Ada |
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"Thanks for this!" says: | loretta (12-27-2009), vannafeelbettr (01-02-2010) |
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#10 | ||
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Senior Member
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Hi Ada, I was at my parents' for a few days, so I am responding late to your posting. What I hate most of all is the feeling of being overwhelmed by things that used to be so simple. I had several house parties to attend, my ordinary shopping, our household to decorate and organize, and then a long trip with a big 50th anniversary party for my parents to attend over the weekend. A few years ago it would have been a piece of cake, I have always excelled at organization and loved the holidays with my friends and family. I could handle it all no problem and do it well, too. My baking is usually the best!! This year I HATED it. It was just too much with my RSD. My husband and daughter had to help me keep it all together. I got done what needed to get done, but it sucked - it was such a struggle and my head hurt so badly I often broke down in tears. I am so glad that Christmas is over and I can finally take it easy. I thought maybe my organization disabilities and depression were due to the Fentanyl or the Oxycodone. Of course the timing of certain problems with WC didn't help things. So Ada you are not alone in this...thanks Mike for the scientific stuff, appreciate it.... XOXOX Sandy |
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