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TOPIC: CRPS/RSD

05 Jan 2009 19:19 #30654

  • cutup
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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
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05 Jan 2009 07:15 #30624

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
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04 Jan 2009 23:33 #30618

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
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04 Jan 2009 21:39 #30612

  • cutup
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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]
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04 Jan 2009 11:04 #30583

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
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03 Jan 2009 11:17 #30501

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
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03 Jan 2009 11:00 #30499

{{{{{{{{{{{{Eileen}}}}}}}}}}}}}}}
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03 Jan 2009 08:35 #30489

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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 :oops: !!
Have a great day,
eileenkny

from the beautiful Hudson Valley of NY
Gammill Classic Plus w/IQ
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02 Jan 2009 23:22 #30470

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Eileen, I've never heard of this before. Prayers are going your way!!! Keep us updated. Judy in Torrance
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Eileen 02 Jan 2009 13:02 #30419

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
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02 Jan 2009 12:16 #30417

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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
Lyndhurst, Ohio USA - East Side Suburb of Cleveland, Ohio
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CRPS/RSD 02 Jan 2009 11:35 #30409

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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

from the beautiful Hudson Valley of NY
Gammill Classic Plus w/IQ
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