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Old 05-08-2002, 03:39 AM   #1
Junior Member
Join Date: Apr 2002
Location: england
Posts: 21
bananatoffeegirl HB User
Question Could This Be Lupus may be?

I was just wondering does this sound like lupus to you? I have the following? 1.terrible pain in my hips? 2. a headache that is there most of the time? 3. burning feet and hands? 4. tingling in diffent parts of the body? 5. swelling of my face and eyes when i wake up? 6.swollen ankles? 7. pins and needles? 9.back pain? 10. terrible mood swings. 11. depression very bad.12.i get hot fulses that come and go? 13. i can not sleepsome times for monthes at a time? 14. i am tried all time and how i cope i do not no? 15. pain in my joints ?16.a rash like pin dots that come and goes on tops of my arms and legs?17. my thyroid tests come back in the normal ranges? 18.i have got rosie red cheeks that are worst some days than others? 19. the last sun bed i had was for 5 mins and i burnt like i had sun burn? 20. i shake somtimes when i am in bed i mean my whole body and i have no control over it? hands shakes most of the time? 22.some time my tonge is sore ? that is all i can think of at the moment as i have brain fog? i hope some one can help as i have been ill like this since my little was born that was five years ago. thanks bananatoffeegirl xxx

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Old 05-08-2002, 09:15 AM   #2
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User

Bananatoffeegirl, yes this sounds like Lupus. Stay out
of the sun and tanning beds. This can set off the disease.Lupus symptoms can come and go and pregnancy
can definitely set it off. Go see a good rhumatoligist
if you are having trouble with a regular Dr. The symptoms
of yours that worry me most are the swelling in face
and feet. This could mean some kidney involvement.
Better get it checked out. Lupus is hard to diagnose
sometimes- keep at it. Good luck.

Old 05-08-2002, 08:08 PM   #3
Join Date: Apr 2002
Location: Atlanta, GA , US
Posts: 310
scbagrrrl HB User

I totally agree with Denise - you need to see a Rhuemy. Your regular doctor can do some preliminary testing - bloodwork and urine screens. In addition to staying out of the sun, it's important to avoid stress and sulfur-products (like the meds you would normally take when you have a kidney infection).

Getting a diagnosis can be difficult - you have to be persistent sometimes. Keep copies of all test results. Make a log of when your symptoms occur - severity, etc. Take photos of your rashes etc because they will "miraculously" disappear the day before you meet with the Rheumy. (ha ha)

There are A LOT of other diseases that may mimic the symptoms you're having - so be somewhat patient with the screening process. It's a disease that they frequently diagnose thru a process of elimination. The more astute you are about your body and symptoms, the easier you can make the process. The Arthritis Foundation and Lupus Foundation are great resources for learning more about the disease and treatments. (And, most of the info is free)

Keep us posted and let us know if we can offer any other insight.

Old 05-09-2002, 05:57 AM   #4
Junior Member
Join Date: Apr 2002
Location: england
Posts: 21
bananatoffeegirl HB User

Thanks to you both, I have been to the docs today and have beentold that all that is wrong with me is lack of sleep? And i have been given antipsychotics ha ha . what can i say, i will keep you both posted love

Old 05-09-2002, 07:45 AM   #5
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User

Lack of sleep, huh!!!! Where did he get his degree???
Time to find a new Dr. I would say I've never heard
any thing so ridiculous but sadly I have heard lots of
similar stories. The daughter of a friend of mine went
to a Dr. a couple of years ago complaining of constant
stomach pains she just got the runaround that it was in
her mind. Finally the last time she went in he told her
to go home and lose weight. A friend suggested she had gallbladder problems. She finally talked her Doctor
into surgery. They opened her up and she had cancer
everywhere. She died an week later. Suppose her Dr.
had any guilt feelings at all?????? Never put a Dr. above your own instincts. You know when something is
wrong with your own body. Don't let this slide it could
be serious regardless of your Dr.'s dumb opinion!!


Old 05-09-2002, 08:50 PM   #6
Join Date: Apr 2002
Location: Atlanta, GA , US
Posts: 310
scbagrrrl HB User

Once again, I'm agreeing with Denise. What type of doctor did you see? Was it a General Practioner? Did he do any bloodwork?

Getting a lupus dx is usually quite a challenge. It requires A LOT of diligence, research and hissy fits upon occasion.

Volunteer for a sleep study. Play his reindeer games.(My doc is saying that my fatigue is due to not sleeping well - I sleep just fine, I am just always exhausted. I'm going thru with the tests to prove to him that it's not my lack of quality sleep)

Make a log of your symptoms and how you're feeling - what meds you've taken, how much you've slept/exercised.

Getting a great rheumy is essential to living with Lupus - you need to have one that is responsive and accessible. Focus on getting a referral to a good Rheumy in your area. Contacting the local Arthritis Foundation or Lupus FOundation can offer some referrals in your area as well as lots of free brochures.

Keep at 'em. I've been where you are -

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