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HI - Lupus Vasculitis - Migraines

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Posted 4/15/2011 5:36 AM (GMT -8)

Good Morning everyone,

Just found this forum today and thought I would join. I'm fairly new to Lupus so I have many questions.  I was just diagnosed with Lupus Vasculitis (or at least that is what the doc is calling it for now). I have 1 friend that has external Lupus, so our symptoms aren't even close to the same. Apparently my blood tests say SLE but most of my symptoms are not by the book. I don't have the butterfly rash, I have this red spider web rash across my sides and back, sore joints, mouth sores and migraines.

Ayway, is anyone else out there dealing with stroke like migraines with their lupus? So far I've been in Imuran (which worked for about 6 months) and now cellcept and predisone 30mg. If I go lower on the presidone the migraines come back.

Also is it "normal" to be sooo tired after doing any form of activity? The doc wants me to walk 30 min a day cause of the predisone weight gain but if I walk around the block (15 min) I spend the next few hours asleep and not able to wake up. If I do any kind of yard work or too much housework, I'm either asleep again or I get another migraine.

Anyway like I said I'm new to Lupus and would love to hear back from others.

Thanks Serephina

Posted 4/15/2011 6:36 AM (GMT -8)
Sometimes part of our exhaustion is from not getting "good restorative sleep". Do you feel rested in the morning when you get up? If not, you might ask your Dr for his favorite Sleep Aid -- there are numerous options but most Rhuemies have something they like that works with prednisone.

Usually it's best to start exercise *very* slowly. Like for 1 week walk 5 minutes daily, then 10 for a week, and so on. The sun, heat, and cold take a toll on us, so early morning or evening are best for walks outdoors. One lady started by walking to her mailbox every day and worked up from there.

Another thing you can do to control prednisone weight gain is make sure you drink plenty of water and don't eat any "bad carbs" - basically nothing white (bread, potatoes, crackers, chips, sugar, sweets...)

Imuran did nothing for me, but Cellcept worked wonders. The third med is MTX -- between those 3 one of them usually works, but you never know which med will work for who - it's a strange disease!

I don't have the migraine kind of lupus, but hopefully another member will post soon who can relate.

Hope you feel better soon,
Posted 4/15/2011 12:10 PM (GMT -8)
I do get terrible migraines esp in flares and my fatigue is unreal... like brushing my teeth is the boston marathon.lol try to move.. if you can't do what he asks then try 10 minutes in your house 3 xs a day... out side is hard for me.. i am sensitive to sun and heat. that puts me right down for a nap. a friend that has lupus said she paces in her home. I turn my timer on my stove on for 15 minutes and clean as fast as i can as much as i can and as soon as the ding goes off i stop. then i rest put my feet up and chill. its hard to accept these limits but i find it more rewarding than walking because i like things in order. and with the husband and two teens still at home there is always something i can do.

hope you feel better soon
fern
Posted 4/26/2011 8:27 AM (GMT -8)
Hi Serephina,

I do get migraines, I'm not sure what stroke like migraines are but I get mild to severe migraines. Have you seen a neurologist for your migraines? Inflammation or CNS involvement or possible pre strokes can present as chronic headaches and migraines and should be taken seroiusly.

Like the others said, you need to start moving around starting slowly. A little a time each day and be sure not to overdo yourself however you should push yourself a little even if it does cause you to be somewhat tired in the beginning. You will notice an improvement as your body gets used to it. My doctor encourages exercise and movement as much as my body allows (listen to your body) as it actually helps to improve your fatigue and pain. The time you should take it easy though is when you are in a flare or ill.
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