Anyone with Lupus/fibromyaglia? - Tilted Forum Project Discussion Community

yoshi · 07-05-2003, 06:15 PM

I was diagnosed with Lupus at age 14. I'm currently taking medicines on a daily basis which drives me crazy. Have good days and bad days. I have a very supportive husband, but it is hard for me. Anyone with any tips or suggestions would be great.

Tower · 07-07-2003, 12:36 PM

I haven't, but I'm not even aware of what Lupus is. More information on it? Sorry to hear it affects you so negatively though..

yoshi · 07-07-2003, 03:05 PM

Quote:

Originally posted by Tower
I haven't, but I'm not even aware of what Lupus is. More information on it? Sorry to hear it affects you so negatively though..

Hmmm--I have the systemic lupus which affects the muscle tissue and joints. Causing arthritis, swelling, pain, being tired and a whole list of things. Try going to Arthritisfoundation.org, I think they have stuff on Lupus. I go to the doctor every three months, take medicine daily, and try to take care of myself--hehe, which isn't always easy. After 18 years of dealing with it, I still get down and depressed sometimes, but try to keep my spirits up. I'll try to locate some other info that could help you to understand it better.

Ratman · 07-08-2003, 06:50 AM

I have fibromyalgia. my sister in law has it as well. One of her docs, a progressive sort, got her on the guaifenesin protocol. I started taking guaifenesin about two months ago. It is amazing how something so cheap can be so effective. I get mine from guailife.com. There is loads of useful info and links at that site. Give it a try if it's fibro, I don't know about lupus.

yoshi · 07-08-2003, 04:53 PM

Thanks Ratman. I take an Rx drug called Elavil b/c I was having a lot of pain and I was not sleeping. This helps both in connection with plaquenil which is what I take for Lupus. I will ask my doc about it though--I'd love to start getting off some of this stuff!

BigBlue66 · 07-09-2003, 07:45 AM

My wife has fibro. Diagnosed in '94. She takes handfuls of pills every day, which include almost 300mg of morphine. Now they have her on Neurontin, 1800mgs/day, and it seems to be helping. Maybe they can ween her off the morphine eventually.

I've heard of the guaifenesin treatment regime before. Guess I should talk to her Doc.

hrdwareguy · 07-09-2003, 11:40 AM

I did a report on Lupus for a class once. Really nasty stuff.

For those who don't know what it is, Lupus is a degenerative disease for which there is no cure. It is an auto immune disease in which the bodies immune system attacks the body instead of outside organisms as it should. It is very painful from what I read and from what I hear.

yoshi · 07-09-2003, 02:25 PM

Quote:

Originally posted by hrdwareguy
I did a report on Lupus for a class once. Really nasty stuff.

For those who don't know what it is, Lupus is a degenerative disease for which there is no cure. It is an auto immune disease in which the bodies immune system attacks the body instead of outside organisms as it should. It is very painful from what I read and from what I hear.

Ah! It is very painful a kind of pain that is hard to describe. You learn somehow to get through and deal with it though. I have good days and bad days. I have a super supportive husband and that really helps.

gmoney · 07-13-2003, 11:14 AM

OK, for those who are tired of doctors telling them that they will be sick for the rest of their lives. READY. Tough love.
THEY DON"T KNOW IT ALL! Doctors took 4 hours of nutritional training in med school. I know! If the pills aren't working then try something else. I have searched for a long time to find this product. Please please please try this. It worked for me and some of my family members and freinds. http://www.primaldefense.net/perffoodcap.htm
It is all natural and organic. It can be taken with your doctor's pills. Try half the dose for a month and ease into it. You will start to heal and in 8 months to a year, your body will start to heal itself. I can't guarantee that it is a cure, but you will feel much much healthier.

07-05-2003, 06:15 PM	#1 (permalink)
yoshi Crazy Location: Jersey	Anyone with Lupus/fibromyaglia? I was diagnosed with Lupus at age 14. I'm currently taking medicines on a daily basis which drives me crazy. Have good days and bad days. I have a very supportive husband, but it is hard for me. Anyone with any tips or suggestions would be great.

07-07-2003, 12:36 PM	#2 (permalink)
Tower Tilted Location: Whitewater, Wisconsin.	I haven't, but I'm not even aware of what Lupus is. More information on it? Sorry to hear it affects you so negatively though.. __________________ Regulator 2k3. Intergalatic Planetary.

07-08-2003, 06:50 AM	#4 (permalink)
Ratman Addict Location: Somewhere... Across the sea...	I have fibromyalgia. my sister in law has it as well. One of her docs, a progressive sort, got her on the guaifenesin protocol. I started taking guaifenesin about two months ago. It is amazing how something so cheap can be so effective. I get mine from guailife.com. There is loads of useful info and links at that site. Give it a try if it's fibro, I don't know about lupus. __________________ The difference between theory and reality is that in theory there is no difference. "God made man, but he used the monkey to do it." DEVO

07-08-2003, 04:53 PM	#5 (permalink)
yoshi Crazy Location: Jersey	fibromyalgia Thanks Ratman. I take an Rx drug called Elavil b/c I was having a lot of pain and I was not sleeping. This helps both in connection with plaquenil which is what I take for Lupus. I will ask my doc about it though--I'd love to start getting off some of this stuff!

07-09-2003, 07:45 AM	#6 (permalink)
BigBlue66 Upright Location: Madison WI USA	My wife has fibro. Diagnosed in '94. She takes handfuls of pills every day, which include almost 300mg of morphine. Now they have her on Neurontin, 1800mgs/day, and it seems to be helping. Maybe they can ween her off the morphine eventually. I've heard of the guaifenesin treatment regime before. Guess I should talk to her Doc. __________________ Just tryin to get by.

07-09-2003, 11:40 AM	#7 (permalink)
hrdwareguy "Officer, I was in fear for my life" Location: Oklahoma City	I did a report on Lupus for a class once. Really nasty stuff. For those who don't know what it is, Lupus is a degenerative disease for which there is no cure. It is an auto immune disease in which the bodies immune system attacks the body instead of outside organisms as it should. It is very painful from what I read and from what I hear. __________________ Gun Control is hitting what you aim at Aim for the TFP, Donate Today

07-13-2003, 11:14 AM	#9 (permalink)
gmoney Upright	OK, for those who are tired of doctors telling them that they will be sick for the rest of their lives. READY. Tough love. THEY DON"T KNOW IT ALL! Doctors took 4 hours of nutritional training in med school. I know! If the pills aren't working then try something else. I have searched for a long time to find this product. Please please please try this. It worked for me and some of my family members and freinds. http://www.primaldefense.net/perffoodcap.htm It is all natural and organic. It can be taken with your doctor's pills. Try half the dose for a month and ease into it. You will start to heal and in 8 months to a year, your body will start to heal itself. I can't guarantee that it is a cure, but you will feel much much healthier. __________________ Hey, a little pain never hurt anyone.