Hi,

If had bad experinces when my lupus and fibromyalgia flared at the same time. Has anyone gone throug that? If so, how did you del with it?

Deborah

Hi there! I have had flares that are so painful and joint involved that I was not able to walk for days; could not even feed myself.

At first, I would end up spending about a week or so in the hospital; but now I can usually head them off. I have learned what to watch for when I begin flaring.

I am very big on trying to understand the path my flares take. My doctor is very happy with my being able to catch them as they begin. She now has set up a plan with me that I use to keep myself out of the hospital.

The best thing for me has been hot soaks (bath or hot tub). They allow enough relaxation for me to have a few minutes of peace when things are really bad.

I also took some fairly potent drugs for a while...Percocet, Darvocet, Oxycontin, Morphine...a few others only available in IV form. I now try not to do that unless I am in severe (8 or higher) pain. Mainly because coming off the Oxycontin was a nightmare.

Also, I have an incredible support system. My husband, many times, took off work to help me through the days. Or, if he was unable, my mother or mother-in-law would travel into town to help out. They really helped me.

One of the best things I have learned is, as soon as I am able, I begin walking. It really works out the joints and muscles and actually helps me pull out of a flare quicker. I'm not going to lie...it hurts, but in the long run it helps me more.

As always, you should run things by your doctor first...

LadyBrannon

The best thing to do is to learn what may trigger your flare-ups. It could be poor sleep, stress, weather, sunlight, foods such as chocolate or caffienated beverages. I have heard trying to cut the carbs out of your diet and stick mainly with protien and fiber rich foods. I personally have not tried it yet. Also do not sit still too long, stretch your muscles, walk until your hips feel more free flowing, try some deep breathing exercises for about a minute to help you relax. Believe me you sort of get used to the consistent pain but those flares are something else. If you work, try laying down when you come home for about 20 to 30 minutes, not to necessarily sleep, just to rest your body. Do some of the deep breathing too. My mother-in-law has Raynauds disease but says it is practically non-existient now since she had moved to the San Juan King area from Illinios. Good Luck!

The best thing to do is to learn what may trigger your flare-ups. It could be poor sleep, stress, weather, sunlight, foods such as chocolate or caffienated beverages. I have heard trying to cut the carbs out of your diet and stick mainly with protien and fiber rich foods. I personally have not tried it yet. Also do not sit still too long, stretch your muscles, walk until your hips feel more free flowing, try some deep breathing exercises for about a minute to help you relax. Believe me you sort of get used to the consistent pain but those flares are something else. If you work, try laying down when you come home for about 20 to 30 minutes, not to necessarily sleep, just to rest your body. Do some of the deep breathing too. My mother-in-law has Raynauds disease but says it is practically non-existient now since she had moved to the San Juan King area from Illinios. Good Luck!

I am the newsletter editor for our willamette valley support group in eugene, or. We have had a rheumatologist, he asked for 3 questions to discuss, an acupuncturist on acupuncture and relaxation, a red cross water instructor on water exercises, a walking group leader, a grief counselor, northwest lupus chapter board member showed the lupus video and spoke about what the chapter is doing. Thes ideas are probably what have already had but I hope one will help.

Hi patti! Thanks!

We are in the middle of a huge change. We are talking to doctors, counselors and even had a mini-health fair.

I would love to see your newsletter!
Hugs,
ladybrannon