I'm in a good mood
October 6, 2009 4:40pm
I don't really know why. I just found out my ANA is at 0 which means my lupus is in remission. It sounds really exciting because my ANA has …
SleepyJulie 
5:39pm, August 19, 2009
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About Me
SleepyJulie
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About Me
I'm a 20 yr old Christian girl from the Midwest. Sick since Sept '04, the beginning of my sophomore year in high school so I have not finished school and am on SSI. I have severe constant headaches and haven't found anything other than narcotic pain meds that even touch the pain. It's hard to stand. I am still hoping!! I may grow out of POTS and get some relief, so for now I am just trying to get through each day. I do everything I can to lessen the pain and my symptoms.. which means being by myself, laying in bed in a dark, quiet room. After a few years of chasing doctors I did get the diagnosis's of lupus, postural orthostatic tachycardia, irritable bowel syndrome, and chronic fatigue syndrome. I take so many pills that they feel like a meal in their own.. but it's worth it if they will give me any relief! I dream about people trying to take my pain medicine away. I am desperate and my doctors all seem to be stuck. After a bad experience at a headache clinic I am really stressing over my next move. Mayo Clinic?... I am not ready to accept this kind of life! There just has to be something else out there to help! Can't imagine feeling like this the rest of my life.
I'm a 20 yr old Christian girl from the Midwest. Sick since Sept '04, the beginning of my sophomore year in high school so I have not finished school and am on SSI. I have severe constant headaches and haven't found anything other than narcotic pain meds that even touch the pain. It's hard to stand. I am still hoping!! I may grow out of POTS and get some relief, so for now I am just trying to get through each day. I do everything I can to lessen the pain and my symptoms.. which means being by myself,
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Interests
Movies, loving on my dog, playing with my baby nephew, The Sims 3, online games, television
Movies, loving on my dog, playing with my baby nephew, The Sims 3, online games, television
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Recent Activity
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Journal
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Hugbook
High Five
You know any good docs around here?
Give me call sometime if you need someone to talk to-(567) 525-5150
Sheri-
Hug
TY for the welcome. Are you in Findlay too?
Hug
hiya. I'm so glad you messaged me its nice to chat to someone my own age who understands. The doctor just told me maybe two days ago that its more than likely i have SLE lupus. I don't even really know what that is, feeling a little down as he says theres nothing they can do to help me. Do you know any more than I do? How are you doing at the moment? x
I’m With You
I've been able to recognize the signs before I pass out also. I can't run a vacuum, or do anything with my arms above my shoulders.. I can't stand still more than a minute.. I do better if I'm walking; but can't do that very long. I've been building up my stamina by walking a little each day. It's taken a few years.. but I can be out about an hour now. Although there have been times I've just stopped and sat down in the middle of a store until my blood pressure comes back up.. I get some strange looks but Oh well... lol
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Flower
I just noticed you have POTS? you're the first I've met that does. Have you suffered any fainting spells?
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Photos
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Support Groups
Close Lupus
I was diagnosed with Lupus on my 18th birthday. I have been on lupus meds for more than a year and have not seen a difference. I find it hard to believe they say people with lupus have a good prognosis, but they also say the medicines do not work for everyone. So, what now?
Treatments
- Cellcept Not Working
- No side effects, no improvement but got worse when I went off this & plaquenil
- Medrol Not Working
- Pulse IV steroids 3 days in a row, whole body much less puffy, but headaches not affected. Monthly steroid IVs no marked change
- Plaquenil Not Working
- Have not seen a difference with taking this for more than a year but am afraid to go off of it again and feel worse
- Prednisone Not Working
- Pill form-no improvement. Did not break out or gain weight
Close Chronic Fatigue Syndrome
I have CFS. Looking for friends that understand and tips to cope
Open Irritable Bowel Syndrome (IBS)
If it's not one then it's the other. Even after I "go" I feel constipated. I get stomach pain too.
Treatments
- Benefiber Working / Worked
- Benefiber works. I like the tablets but you take them 3 at a time and can end up taking 9 a day.
Open Hypermobile Syndrome
SleepyJulie hasn’t entered any details for this support group.Open Chronic Pain
Treatments
- Acupressure Not Working
- Acupuncture- several treatments did not help, and were painful
- Chiropractic Adjustment Not Working
- Upper cervical chiropractor- no reduction in headache pain Regular chiropractor working with laser & manual adjustments- VERY painful
- Cymbalta Too Soon to Tell
- Working up to a therapeutic dose
- Heat Not Working
- Makes headache worse
- Hydrocodone Somewhat Helpful
- Takes the edge of the pain. Gets less and less effective
- Lidoderm Not Working
- Does nothing, just feels cold
- Lithium Not Working
- Lyrica Not Working
- like water
- Mobic Not Working
- Tried, didn't work
- Morphine Somewhat Helpful
- Had for spinal tap headache on top of normal headache. I was too drugged up to remember most of the time, but what I do remember I did not have a headache. I missed a whole day and a half and fell asleep on the toilet though, and know my dr would not write for this and continue to use it.
- Naproxen Not Working
- Does nothing for my headache but great for cramps
- Nerve Blocks Not Working
- Had 2 trials and they seemed to work. The real nerve ablations in my spine did not help my headache pain. My back hurt for more than a week and after all of that I think it was the sedation that helped, not the numbing of the nerves.
- Neurontin Not Working
- Oxycodone Working / Worked
- Takes the edge off headache. Less and less effective.
- Physical Therapy Not Working
- For head neck and shoulders. VERY painful during & days after. Did not have neck or shoulder pain before physical therapy, did after! No reduction in headache pain. Discontinued
- Topamax Not Working
- Tried, didn't work
Open Migraine Headaches
Treatments
Open Insomnia
Have a horrible time getting comfortable and falling to sleep, even with benadryl, percocet, xanaflex and ambien. If I wake up with less than 9-10 hours of sleep I get a different type of headache that is excruciating. I have to retake my pain med, muscle relaxant, allergy med ect to have a chance at getting back to sleep. On top of that sleep is not refreshing, I wake up and within an hour I feel totally wasted and like I should go back to sleep.
Treatments
- Ambien Somewhat Helpful
Open Pre-menstrual Syndrome (PMS)
All of my symptoms are worse around my period. I dread it every month. Something about lupus & the pill.. I couldn't get seasonale :(
Treatments
- Naproxen Working / Worked
- Works great for cramps!
