NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Now What? I have Lost The Battle! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/109787-lost-battle.html)

snowboarder13 12-11-2009 02:10 PM

I know how you feel, but you havent lost the fight! Dont ever give up on yourself! Come on you can do it. I do have one thing to ask though. Have you tried Physical therapy? That works for me... Or have you tried the SCS?

Breezy55 12-13-2009 01:48 PM

Re/UpDate/With/Battle?
 
Since my last post thing's have not changed alot. However I did get in early to se my neurologist. We did talk alot,then he had about 14 tubes of blood drawn from me. Then I am to come back to have another EMG and a Cat Scan. There could be a possibility of having a liver biopsy done,which I am not looking forward to doing! Then my regular Dr. sent a refferal to the pain clinic. When I was in there office and they were sending my refferal the girl that was doing told me that most of the time it takes at least one month before you even get a call back from them! I am hoping that my neurologist can speed thing's up some how? In the meantime it still is a day to day battle just to fight off this pain! Once Again I wanted to thank all of you! Without this wonderfull place I would really have Lost The Battle! Love To All Of You and have a Blessed Christmas! Always Breezy! :hug: :Heart:

keep smilin 12-13-2009 05:43 PM

Family....
 
Quote:

Originally Posted by Breezy55 (Post 599343)
Since my last post thing's have not changed alot. However I did get in early to se my neurologist. We did talk alot,then he had about 14 tubes of blood drawn from me. Then I am to come back to have another EMG and a Cat Scan. There could be a possibility of having a liver biopsy done,which I am not looking forward to doing! Then my regular Dr. sent a refferal to the pain clinic. When I was in there office and they were sending my refferal the girl that was doing told me that most of the time it takes at least one month before you even get a call back from them! I am hoping that my neurologist can speed thing's up some how? In the meantime it still is a day to day battle just to fight off this pain! Once Again I wanted to thank all of you! Without this wonderfull place I would really have Lost The Battle! Love To All Of You and have a Blessed Christmas! Always Breezy! :hug: :Heart:


Family..I say.. we have such a wonderful group to friends here on this site to turn to...we are hand picked friends..thats even better than family...we share the same concerns and fears..we know just how to comfort eachother! I raise my glass to each and everyone here as I know I would be lost with out you... RSD will not beat us as we need each other... Bless you all..and thank you... Try to keep smilin...:grouphug:

Imahotep 12-13-2009 05:59 PM

It usually taks a while to find the right combination of medications to make this tolerable. People have side effects and some drugs just don't have the expected result.

Hang in there.

smile357 12-13-2009 06:01 PM

I am so sorry to hear the amount of pain you are in. It makes life very tough. I don't know if you have tried changing your diet. Inflammatory foods such as red meat, potatoes or the night shade vegetables makes pain worse. My daughter who has rsd notices right away when she has eaten something that is inflammatory. I hope this helps. Any other questions PM if you want more info.

Imahotep 12-13-2009 06:21 PM

Quote:

Originally Posted by smile357 (Post 599401)
I am so sorry to hear the amount of pain you are in. It makes life very tough. I don't know if you have tried changing your diet. Inflammatory foods such as red meat, potatoes or the night shade vegetables makes pain worse. My daughter who has rsd notices right away when she has eaten something that is inflammatory. I hope this helps. Any other questions PM if you want more info.


Diet is very important to me as well. Good and bad keep changing but I should avoid sodium nitrite found in all preserved meat, salt, sugar, and overeating. I have to keep my salt level very low and very stable.

There are some herbs and the like which I find beneficial; Ghingko Biloba, vitamine C, tea, lavender oil (applied to skin), grapeseed extract, and cod liver oil. Avoid stress. Eat fresh fruits and vegetables.

Try to maintain a routine and find ways to distract yourself fromn the pain. I laughed when the doctor said to distract myself but actually he was right. This is one of the most powerful weapons.

Mostly just hang tough.

AintSoBad 12-13-2009 11:14 PM

I'll tell ya,
that dam headline you got goin, is VERY eyebrow raising!

We have SO many trial cures, huh? and of course, most none of them work!
GD' it!

That's not my usual line!
WE must fine our most BEST line of attack, because WE must ATTACK this Bear Monster of a disease!
Not a cool thing to do by our selves.
Not the coolest thing to do with our younger children.
Not the greatest thing to do with a spouse.
F/them, often.

Not a great thing to do with the Easter Bunny!!!!


Who we gonna do it with?????


Can someone get back to me on that????








Pete

xo

snowboarder13 12-15-2009 02:13 PM

Quote:

Originally Posted by AintSoBad (Post 599467)
I'll tell ya,
that dam headline you got goin, is VERY eyebrow raising!

We have SO many trial cures, huh? and of course, most none of them work!
GD' it!

That's not my usual line!
WE must fine our most BEST line of attack, because WE must ATTACK this Bear Monster of a disease!
Not a cool thing to do by our selves.
Not the coolest thing to do with our younger children.
Not the greatest thing to do with a spouse.
F/them, often.

Not a great thing to do with the Easter Bunny!!!!


Who we gonna do it with?????


Can someone get back to me on that????








Pete

xo

WE are going to do it with ourselves and our kids and our spouse! If you need help with something ask. It may not be the greatest thing in the world to do but at least you wont be alone all the time. At least you can find what works for you.

AintSoBad 12-15-2009 03:47 PM

Quote:

Originally Posted by snowboarder13 (Post 600029)
WE are going to do it with ourselves and our kids and our spouse! If you need help with something ask. It may not be the greatest thing in the world to do but at least you wont be alone all the time. At least you can find what works for you.


Thanks snowboarder, very kind!

I'm SORRY how I wrote, when I said F/them. It meant Forget them, nothing vulgar. (This weather, I'm having such difficulty typing, or even clicking).
My point being, that it's our disease, not theirs.
I know how frustrating it is, for me.
But, I can't escape it! They can!
They can't be held hostage, to "save us" from something that our doctors don't even know how to cure! It's frustrating as anything can be, for a loved one to be with us constantly, feeling helpless and useless. (Especially during a flare, which seem often in NOV, DEC.)

I was more or less replying to what "Keep Smilin" said.

There's a lot of support here.
It's a good thing.
Sorry I made it sound negative...

pete

snowboarder13 12-17-2009 01:12 PM

Quote:

Originally Posted by AintSoBad (Post 600050)
Thanks snowboarder, very kind!

I'm SORRY how I wrote, when I said F/them. It meant Forget them, nothing vulgar. (This weather, I'm having such difficulty typing, or even clicking).
My point being, that it's our disease, not theirs.
I know how frustrating it is, for me.
But, I can't escape it! They can!
They can't be held hostage, to "save us" from something that our doctors don't even know how to cure! It's frustrating as anything can be, for a loved one to be with us constantly, feeling helpless and useless. (Especially during a flare, which seem often in NOV, DEC.)

I was more or less replying to what "Keep Smilin" said.

There's a lot of support here.
It's a good thing.
Sorry I made it sound negative...

pete

I know but you cant give up! In some ways it would be good if it was negative. If your angry let it out! Even if it is 'our' disease its not always fun to go at it alone. I still am doing it alone and I have suffered for it. I know other people can get away from the pain even though we cant. I know that, but its better to have someone there than to forget about them and try to do it on your own


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