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Old 05-29-2007, 02:10 PM #21
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Default eased up

Just want to let all you who have shown such concern that things eased up over the weekend. I realize how much a cascade of events can do, and how fragile our bodies have become.

I think the pain had gotten really bad because I'd gotten constipated. Constipation causes pressure on lots of nerves for me, and always increases pain. And oxycodone causes constipation. I don't like taking Miralax every day because then I get diarrhea, and with the neuropathic bowel, it can get messy. So, over the weekend I took a laxative, had a good 'un, and felt better. Then I did self massage and that helped. (I feel like I've said that already somewhere). So yesterday and today are much better. I feel more hopeful, and the idea of it being RSD has receded.

Course, I set up doctor's appts based on my fear, so now I'm not sure what to do about that.

Things get complicated.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 05-29-2007, 03:05 PM #22
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Default

Thank god you went to the bathroom!!!

So here's hoping you have a peaceful day and restful night.

Oh, when Alan was on the Fentanyl patch he went once every 5 days. I do not know how ANYBODY CAN GO ONCE IN 5 DAYS!!!

Boy was he a happy camper when he got off that patch.

Sending you a hug. And good thoughts about Dove Bars and Muffins

Melody
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Old 05-29-2007, 03:22 PM #23
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Default LJ

Morphine does the same thing,and we can't run around Like we used to.
And the Miralax you have to be careful about leaving the house. That
site dahlek posted has me worried,the pictures a few look like my foot
and legs. That blister then got the size of a base ball or more like softball.
And it's still draining. First they say celluities,another said vasculites
and darn it i can't spit,with the Sjogrens Syndrone Than the PN. How
do we know what is causing what??? Sue
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Old 05-29-2007, 09:11 PM #24
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Yes, Liza Jane. B12 deficiency did it.

Unfortunately my motor functions were affected before anything else became alarming. And then the ignorant, arrogant doctors fiddled while my systems degraded.

And motor function is probably the least likely to recover.

Thus, my research and big, persistent mouth!

rose
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Old 05-30-2007, 09:37 AM #25
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Default Love it

Rose we love your big persistent big mouth. You've saved a lot of lives with it. Thanks so much. And this reminds me. I've posted your B12 link on the Sjogrens forum and every now and then I boost it up to get everyone reminded that you are updating as you can and also to catch any new members we have. Thanks so much to you for what you do.

And thanks to all of you for what you do.
Billye
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Old 05-30-2007, 10:44 AM #26
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Thank you, Billye. Now I better find some time away from helping family to add lots to that site!

rose
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Old 05-30-2007, 03:55 PM #27
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Default HLA Types

A point of obscure interest--I have the HLA DQ1 type that Dr Fine of enterolabs says is a "lesser' gene for gluten intolerance. It's also a gene that predisposes to RSD as well as narcolepsy.

IKnowing that put me on high alert to look out that my back pain does not morph into RSD.
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---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 05-30-2007, 11:39 PM #28
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Default LizaJane, I guess that you are not ...

alone in the brain going into 'hyperdrive' mode. I can't think of a person here who isn't/hasn't been going thru this mode.
Not to - is a person, who is - not a person.
I Truly Sincerely and Honestly am hoping that you get lucky -really LUCKY!- with the docs you get in the future to deal with it all! I got sort of lucky after a year...I just wish it didn't take us all so long....It SHOULDN'T have to BE this way!

& more for your support of myself and others - j
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Old 05-31-2007, 12:56 AM #29
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Default

Hi e1 I am from the rsd/crps forum, and can probably help a bit.

Anyone who is using ICE most definitely has PN, not RSD! Ice is the enemy for rsd'ers, lol. Also, RSD causes nerves to be overactive... running a feather or cotton ball across the affected limb causes serious pain. Doesn't PN cause those same nerves to be LESS sensitive? There are many similarities between our two disorders, though... which is why I check into your forums once in a while. Some of my "spread" seems more like PN than RSD.
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Old 05-31-2007, 01:07 AM #30
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I go over to your site as well,so welcome Sue
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