Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction.
Hello,
I have a 16-year-old daughter who has the antibody for Lupus but not the disease. This past June after years of no medical problems she began having severe pain in her legs, knees, arms, hands and back. Her rheumatologist thinks it was a viral infection. Her knees have been swollen ever since and she has arthritis in the left one. It is now almost January (7 months ) later and we are still dealing with this with NO answers. She is on Meloxicam daily to manage the pain. She will have a good two or three weeks then a bad few days then the cycle repeats itself.
Her body pain seems to be the muscles.
She had strep throat Nov 16 which she took all the medicine and the symptoms went away. I had to rush her to the er Sunday night because all of a sudden her head felt like it was being squeezed and she was being stabbed in the ears. Turns out she has strep throat AGAIN. They think that triggered a migraine (which she has never had).
I'm at a loss. There is obviously something wrong that is not showing up on labwork.
Any advice is greatly appreciated.
Lisa
I have a 16-year-old daughter who has the antibody for Lupus but not the disease. This past June after years of no medical problems she began having severe pain in her legs, knees, arms, hands and back. Her rheumatologist thinks it was a viral infection. Her knees have been swollen ever since and she has arthritis in the left one. It is now almost January (7 months ) later and we are still dealing with this with NO answers. She is on Meloxicam daily to manage the pain. She will have a good two or three weeks then a bad few days then the cycle repeats itself.
Her body pain seems to be the muscles.
She had strep throat Nov 16 which she took all the medicine and the symptoms went away. I had to rush her to the er Sunday night because all of a sudden her head felt like it was being squeezed and she was being stabbed in the ears. Turns out she has strep throat AGAIN. They think that triggered a migraine (which she has never had).
I'm at a loss. There is obviously something wrong that is not showing up on labwork.
Any advice is greatly appreciated.
Lisa
Like Pamela56 said, definitely keep researching, push for tests and don't give up.
I know when I began with problems back in 90's they tested me for all sorts, and they thought I had Lupus but eventually I was diagnosed with RA.
Take note there has been research on RA and there is possible Virus link. So look into that. It was never determined that a virus was the root of why I got RA but to me it makes complete sense that a virus was the trigger.
RA is a nasty disease and can have all kinds of weired symptoms along with the traditional symmetrical joint pain and swelling.
I found this link to explain about antibodies and Lupus as I was wanting to know myself.
This is for people who do not know that people can have the antibody for Lupus but not necessarily have the disease.
http://lupus.about.com/od/relatedconditions/a/LupAntiCoag.htm
Also it is often that we can have more than one autoimmune disease going on at the same time.
So I would keep researching the autoimmune diseases out there that matches your daughter's symptoms.
NOTE: Fibromyalgia is still not categorized as an autoimmune disease. It is referred to as a syndrome.
I do not know if your daughter's symptoms is fribromyalgia or not but myself have Fibromyalgia and it came as a secondary problem along with the RA I had.
I am unaware of a blood test for this problem. For me the diagnosis was given because of history or RA and the case of how many sore points are on the body and the symptoms that I was having.
The muscle pain I get is intense and very painful at times and most days feel that I have been beaten with a baseball bat. That is the overall feeling.
I find heat helps. Magnesium and something called Ribose-D
an anti-flammatory diet may be helpful aswell for fibro sufferers and types of arthritis.
Fibromyalgia is no picnic and there are a myriad of symptoms that people can have and it is an extremely painful and debilitating condition for many.
I hope you and daughter can get to the bottom of the problems and find some relief and treatment.
She doesn't not meet the criteria to be diagnosed with lupus. I know that some people with a positive ANA do not have the disease but she is having symptoms of SOMETHING. She is now having weird ear pain. I just want a name to it so we can fight that and stop guessing. Thanks for listening.
Has she been tested for RA?
Swelling of both knees is a common symptom for RA.
Trust me I do not wish RA upon anyone but if someone has it and is not getting the right treatment that isn't good. so basically you want to completely rule out RA.
what was her Sed Rate? that usually is measured whenever there is inflammation. And swelling is a sure sign that inflammation is going on in your daughter's body. Something is going on. You can't have swelling and no reason for it.
Some people can be Sero-negative for RA. That means the "RA Factor" comes back negative but people can still have RA because of the other blood results and the glaring obvious RA symptoms.
I would bring it up with the rheumy. If he/she says it's not RA.
Ask them why did they come up with that conclusion. Remember the "RA Factor" can be negative but doesn't mean to rule out RA.
Really be armed with information. Doctors may not always like it when patients are informed and do their own research but it helps to know for yourself. Ask lots of questions. Get your daughter involved too. Be pro-active.
I am sorry if I am a bit long winded with all of this. Just trying to help. LOL
Type away .... i can use all the info you cangive. :)