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 04-06-2009, 03:45 PM #21
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Originally Posted by dennyfan View Post
Before the final diagnosis of RSD I was diagnosed with Fibro. My doctor still believes that to be true. I think alot of my fatigue comes form just fighting pain all day long. Its exhausting. And then theres the sleep issue. I sleep but its far from restful. Memory loss is awful. I write everything down. If I dont forget it. It will not get taken care of. I make lists of the stops I have to make when I go to town. Usually in order. I have to be organized to get things done. It was never like this before. Today is three years since I worked my job. I miss it still so much & wonder when the grieving process will end. I wonder if it ever will.


dennyfan,
Don't be too hard on yourself. Many of us are in the same boat. It does take a while to adjust to the major changes in our lives. There is a different life for us now and we have to learn how to live and move within those parameters.
Each of us finds our ways at different times and to a different place. Hang in there. Di

How RSDS/CRPS Affects the Brain
When there is poor circulation to the brain stem (which is in most cases with RSDS patients.) memory loss, dizziness, poor focusing of eye muscles, poor balance, and migraines result. These are the problems when the disease causes constriction of the vertebral arteries. There can be constant pain in the limbic system (Frontal and Temporal lobes) which causes the memory loss, but also irritability and sometimes insomnia. Anti-depressants can be used, and are sometimes a helper in relieving the symptoms.



Read more: Reflex Sympathetic Dystrophy Syndrome: How RSDS Affects the Brain, the Symptoms, and How to Diagnose It - http://neurologicalillness.suite101....#ixzz0BvpazKKA
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Old 04-08-2009, 12:38 AM #22
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i have had so many of these problems the migranes lossing my car in parking garage. to tired to get up sometimes. it drives me nuts most of the times. or just the problem of not sleeping and then the SX goes nuts. i also do have damage to my brain from the car accident that caused my rsd.. i see certain colors different or like my vision is like an 80yrs old. im 27 for god sakes. but i think that tiredness and migranes are the worse for me..

im glad that someone started this .. great idea!!!!!

carrie
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


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Old 04-08-2009, 08:20 AM #23
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The exhaustion and migraines are also an issue for me - how do you treat them? have you found anything that works?

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i have had so many of these problems the migranes lossing my car in parking garage. to tired to get up sometimes. it drives me nuts most of the times. or just the problem of not sleeping and then the SX goes nuts. i also do have damage to my brain from the car accident that caused my rsd.. i see certain colors different or like my vision is like an 80yrs old. im 27 for god sakes. but i think that tiredness and migranes are the worse for me..

im glad that someone started this .. great idea!!!!!

carrie
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Old 04-08-2009, 09:21 AM #24
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DianeA, Thank you. There have been a lot more major changes like my counselor pointed out on Monday. It would probably be better if that where the only one. But on top opf that last year just before my 20 year wedding anniversay my husband & I had to file for divorce to protect him from all my medical bills & being responsible for me anymore. We needed to protect the house & everything we had worked so hard for. It was worth it but at the same time it was devastasting. It just seems to never end. You just keep finding one more thing you lose again & again thanks to RSD. Thanks for the support.
Hugs, Denny
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Old 04-08-2009, 11:11 AM #25
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The exhaustion and migraines are also an issue for me - how do you treat them? have you found anything that works?

not really i have horrible reactions to most migraine meds the triptons in it make my mouth and throat swell. so basicly all i can do is take my phenergan and zanaflex and try to go to sleep. but i get migraines that can last as long as a week and i have the whole tunnel vision and vomitting .. so its always fun (not!) but there are alot of meds out there for it .. they say that topamax helps with them but it didnt for me ... sorry im not that much help on this subject



denny-i am so sorry that you and your husband had to do this. its amazing how much this can change out lives hang in there


carrie
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hope this finds all in less pain
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




please check out our website to help bring awareness to RSD!


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Old 04-08-2009, 11:19 AM #26
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Denny,
I do understand. It is tough and major, I mean major changes take place in our lives. Here are a few things you have going for you. Number one a counselor. I think that is very important to have someone outside of our loved ones to talk over issues with. Number two..you and your husband are resourseful!! You did what it took to hang on to the assets you currently have. That is major. That was a smart and very practical move. I have confidence after reading your post that you , hubby and counselor will face the trials that may or may not be up and coming. After 20 years of full body CRPS, one learns to live a somewhat different life than most, but none the less, a valued life.
Remember these are just life situations. What is important is the relationships we share with other while on earth. I have met some AMAZING women and men here, we are fortunate that we can share our experiences, fears, concerns, knowledge and compassion with each other. HUGS Di
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Old 04-08-2009, 12:35 PM #27
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Originally Posted by dennyfan View Post
DianeA, Thank you. There have been a lot more major changes like my counselor pointed out on Monday. It would probably be better if that where the only one. But on top opf that last year just before my 20 year wedding anniversay my husband & I had to file for divorce to protect him from all my medical bills & being responsible for me anymore. We needed to protect the house & everything we had worked so hard for. It was worth it but at the same time it was devastasting. It just seems to never end. You just keep finding one more thing you lose again & again thanks to RSD. Thanks for the support.
Hugs, Denny
I'm so sorry. You are a survivor. And you are smart to have a counselor. There is a lot of support here. Wishing you well Sandy
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Old 10-30-2010, 12:20 PM #28
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Angry Just got more test results back

Well this week just made me not like life even more. So I found out that I am in with the like 2% of people with RSD where it causes you to end up with kiddney failure due to working the bladder too hard and since the disease caused this they can't do anything to fix it. And on top of that I just got another test result back yesterday and well yep no more sort term memory unless I write everything down like I've been doing for about 4 months now. Can it ever get any better.
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Old 10-30-2010, 02:04 PM #29
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Default hi,

I was just thinking this morning about journaling again due to my problems getting worse. I did it for about 3 years and stopped but I think it's important to keep up with how we do each day.

My memory loss seems to have gotten worse. My Dr. was laughing at me awhile back because I couldn't think of the word tie. I was complimenting him on his tie and I said shirt. After 20 years though he knows what I mean. I have a 26 year old friend that finishes my sentences for me all of the time. I think that's amazing when they know you well enough that they actually know what you mean. But very embarrassing. This is all of the time too. It is an everyday thing for me. I'm 59 so I don't know if the age thing might add to it.

As far as meds, I can't chalk it up to my pain meds because I have just started using them again after a year.

Luckily we all can relate to each other here and know what the other one means when they say something that doesn't come out right.

Ada
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Old 10-30-2010, 03:55 PM #30
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Default Fatigue & Short term memory

I agree with most of the other posters and you must realize that the fatigue alone can come from what your body goes through during a flare due to the pain, it is nothing short of exhausting. Short term memory? How many of us can function at 100% when constantly distracted by pain.

Other things to consider would of course be meds and perhaps lack of sleep.

I also suffer from migraine type pain and find that benzo's - klonopin, ativan, valium, tend to help most with these along with a dark cave.

I certainly may be wrong but I don't believe the memory and fatigue are so much symptoms of the disease as symptoms of the treatments and toll it takes on the body.

Feel better
Dawn
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