CRPS/RSD

[eileenkny]

Does anyone else here have this? For everyone else it's Chronic Regional Pain Syndrome/Reflex Sympathetic Dystrophy.
I've got it in my right arm/hand and it's starting to spread. It would be great support if those of us who suffer from this could talk about it without having to explain anything.
This is part of the reason I've been so quiet for so long. I've been getting very depressed about all of this.
eileenkny

[kfstitcher]

I'm sorry to hear about your trouble Eileen. Hope you can get some help with it so you can get happy and moving again.
Karen

[snowplow3840]

Eileen, dear heart, please do not be silent for so long anymore. I do not know anything about your syndrome but do care about you. So keep in touch. I will do some research and see what I can find out. Hugs and love, Ann

[Judymc]

Eileen, I've never heard of this before. Prayers are going your way!!! Keep us updated. Judy in Torrance

[eileenkny]

Thanks everyone. This has gotten me down, to say the least. It's all part of the Workers Comp thing I have going on. The insurance company wants to deny that I even have it, but my dr is standing by her diagnosis. I do belong to an online support group but I don't love them like I do you. We've become a family here and I was wrong to withdraw into myself. I'll try not to do that again ops: !!
Have a great day,
eileenkny

[PattiSure]

{{{{{{{{{{{{Eileen}}}}}}}}}}}}}}}

[joanrae]

Eileen, you will be in my prayers. I have fibromyalgia and chronic fatigue, and sometimes people just think I'm crazy! I still need to find a doctor here in northern virginia, and am just so worried I'll get someone who has no clue, I know, try again! It's exhausting just thinking about it! Take care, and know we are here for you.
Joan

[joanrae]

Eileen,
Thank goodness they at least know what it is! The last time you mentioned anything that I remember you were still unsure what it was. Now that they know what you have hopefully they will be able to explore possibilities on treatments. We care about you so next time mum is not the word. We may not be able to do much but we can offer a sympathetic ear and words of encouragement. Believe me after the past 6 weeks I just had this site was pretty much my only source of escape from my problems. If it had not been for my friends here on TQS I probably would not have been able to cope with the many issues I faced. Please don't hold it in you do not have to go through your pain alone. This group is AWESOME :!: :!: :!: :!: :!:
Rachel

[cutup]

Joan
Have you been tested for Epstein Barr Virus aka EBV
that is what I had and there is a blood test for this, I was in bed for about 8 month with this very hard to function, taking a shower was a chore and forget diner dishes or any other house cleaning. some symptom's of this are even a temp. of below normal mine was 97, blood pressure was like 80/60, you forget everything cant find simple words like coffee, water just stupid stuff, aside from all the aches and pains.

Eileen,
Sorry to here about your difficulties hope you keep fighting workmen comp. my sister just settled because she is diabetic and some of the things can be related to that, but we don't think so
....Jean[url]

[cutup]

Eileen
"We will always be here for you", I'm so sorry to hear about your diagnoses, Hang in there its gonna get better I'm sure with just the right treatments. I know when you feel so much pain that you want to escape into depression then with draws will follow but you have to have 'inner strength and good faith' that you are gonna get better. When I was having some bad pains I found myself snapping alittle at some Not meaning to but noone around you feels what you feel-they don't understand the pain because they don't feel it. Having supportive surroundings makes it alittle easier to deal with. You never know who can say the least little things that may help you the spirit has healing powers to If you ever feel alittle grumpy because youre in pain from having a real bad day I'll understand,I'll try my best to hold your hand and bring forth any comfort that I can. Know you have many friends here to support you. My thoughts and prayers come your way.
Love ya,Hugzzz,Kathy

[joanrae]

Jean, Yes I do have Epstein Barr, is it worse than the fibromyalgia? what do I do for it? I just got out of bed, and I really just want to crawl back in, but I know if I do I will feel worse later--achy and headache and even more tired. So I make myself get up. But I'm too tired and achy to get in the shower, I'm afraid I'll topple over. And YES the simple words just leave me and sometimes my family gets get impatient waiting for me to finish a sentence! I thought this was fibro fog, but it is all related isn't it?
How are you feeling now?
Joan

[cutup]

Hi Joan
Yes its all related, My husband and I got really good at charade's
I would get out, Can I have a cup________ just go blank, (Of coffee)was gone so I would motion a fake cup he, got it
Well my Doc was great He gave me things to do, I did not even drive I was afraid so I had to go to the grocery store and get a gallon of milk, Why milk, its in the back of the store! It took about 2 weeks before I got that milk. He put me on Prozac I called it my vitamin P, EBV is brought on by stress and just letting yourself get to run down, so that helped a lot, because on top of your work taking care of kids, house, bills etc.... Now you don't do anything and feel guilty about that toooooo, so yeah vitamin P, so just try to take care of you, call it selfish or anything you want but if you don't take care of you, you cant take care of anyone, that was hard to do. I worked on Jigsaw puzzles got my mind going, it was therapy
so do something like that, some may say well if she can do that why cant she do this? Because it has to please your mind, if it is sewing do that knitting do that , I hope you understand all this, Please ask any ? you may have I will try to help some Doctors just blow this off because they don't know anything about it go to the library look up anything you can I will try to find some web pages on this. I am good now the words still don't always come but way better than it was, memory is still iffy but my Doc say it that's selective memory HAHAHA he is so funny hope this helps its been 10 yrs now so oh and I gained 60lbs from doing nothing, and I still have that but this my be the year to get rid of my extra baggage. Good luck ......Jean

[cutup]

17 years ago I tested positive for EBV, and was told I had Chronic Fatigue. Next doctor said that there was no such thing it was all Fibromyalgia. All I know is if I don't get enough sleep, i begin to sound like I am not speaking English! :lol: It got so bad at one point, i was asked my name and couldn't remember! :lol: to top it off I ache like I have the flu, even when I don't have the flu. It does help to get regular exercise, but when you have a physical job it is really hard to make yourself do it. If you don't use it you lose it! :lol: (the ability to move, that is)
it has gotten to the point that I don't remember what "normal" feels like. i just know what my normal is, and judge accordingly.
As to what I do for it, I try to remember to take my vitamins and go to yoga at least twice a week and to get at least 9 hours of sleep a night. And try to eat right. Some of the reading I have done indicates that the fibro sufferers do not absorb vitamins well and must supplement. Some doctors prescribe vitamin injections.
Sorry for the rambling, I have a cold and the fog tends to reappear when I'm sick.
Jean in Windsor, ON

[joanrae]

Jean, it is amazing to find someone who understands! Do you know any good doctors in Burke VA??!! We are still looking for a doctor since we moved here in July. I like to keep busy, and with the three boys and all their activities, and volunteering at school, and then going back to school (I was crazy) with three little ones and then working at their school, I wore myself out, now that I am home and have good days I feel guilty that I am not working, but I know if I get into the rat race again, I will hurt all over and not accomplish anything. My legs ache so much I cannot sleep on my back for the back of my calves touching the bed! Sitting down too long hurts, standing too long hurts, walking too long hurts, so I just go little by little and I feel tired I have to sit with my legs up. Shoes hurt, clothes hurt, I hate to complain, but people think I'm crazy because I still do things around the house and quilt so I can't really be sick! Yet if I sit with my legs up, I feel guilty for doing that! My husband and boys understand, I think the rest of the family thinks I'm crazy! When I was in FLorida with my parents for that month, my legs and hips burned, no other word for it, dad's nurse said it was inflammation and I started taking motrin which really helps with the pains, but now we find I have gastritis! so no more pain relief!Anyway, I will be happy for any advice, any information, anything!! Sorry for going on and on! Thanks for listening!
think I'll go to bed now!
Joan

[cutup]

OK here is a link to the book I bought
http://www.alibris.com/booksearch?qw...*listing*title
Its $1.99 Loads of info Just get a doc to give you anti depressants, eat white meat take vitamins, and rest when your tired, go take a nap, I still do that my mom says you you have only been up 6 hours, I don't care if I was up 2hrs I take a nap because it will always be there but it lays dormant until you run yourself ragged again and it will slap you right in the face. The book says no caffeine, well I can only change so much but your not taking my coffee. I followed the book for awhile but then you start getting through things on your own.

Jean
I still hurt too and your right normal is relative back, legs, fingers and YES a lot of brain farts, I just say I am having a mental day, and everyone now gets it, you have to laugh at yourself a lot don't let it bother you, you do the best you can, that life when I laugh at myself then its no pressure, don't dwell on this you only get depressed and that is key don not allow yourself to get depressed learn to laugh again :lol: :lol: :lol: ......Jean