PLEASE HELP need advise!!!!

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New Member

Date Joined Sep 2008
Total Posts : 12
   Posted 10/8/2009 4:50 PM (GMT -7)   
I was diagnosed with Fibromyalgia back when I was 15. My Mother had a combination of conditions they called mixed connective tissue disorder. This consisted of Fibromyalgia, Rhumatoid Arthris, and Systemic Lupus. She passed away at the age of 48 due to complications to the Lupus. I am now 32years old and my health has taken a drastic turn for the worst. My question is how am I supposed to tell the difference between severe Fibro flare and possible Lupus pain?
Please if anyone can help me come up with some questions for my Doctor I would appriciate it. I have looked on all the Lupus websites but none of them seem to combine the two conditions to be able to judge if I should casually ask about testing or if I am in some real danger here and have to force the issue. (Keep in mind I go to the VA) I do not want to put my life in jeopordy cause the doctors blew me off.
Thanks in advance,
Still_Kickin_30  AKA Rebecca

Still_Kickin_30 aka Rebecca

I am a 31 year old Female and US Army Disabled Veteran Proud to have served in Afghanistan during "Operation Enduring Freedom" Awarded the Purple Heart, and Army Commendation Medal, Proud Mother, and Fiancée to a wonderful man.

Fibromyalgia diagnosed at 15yrs old, ADHD, PTSD, Spinal Fusion lower back, Carpel Tunnel, and 1/16th aluminum parts lol.

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 10/8/2009 5:15 PM (GMT -7)   
Hi Rebecca!!

And welcome!!

First off, let me thank you from my heart for your service to our country in Operation Enduring Freedom. And to have a Purple Heart no less. I am in awe!

But I'm sure your pain often breaks through all of that and with the concern of lupus it only makes it harder. Have you ever been diagnosed with lupus? I will guess that not so it's a very reasonable thing to ask for. If it's in your family you should darn well be getting tested, especially with the pain you have. I've heard of some VA hospitals that are good with fibro, but then there are others. On the Chronic Pain forum, where lots of us visit also, there is a moderator named White Beard who is a retired/disabled Air Force (I believe) and he may be able to add some great idea working with military benefits.

But from my small amount of Lupus knowledge and reading a bit online, the tendency for lupus is likely hereditary. Here's a small bit from .

""It is suspected that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. Relatives of lupus patients have an approximate 5-12% greater tendency to get the disease if family members have it. ""

So yes, do ask your doctor to be tested and sent to a rheumatologist....and soon! It often takes a long wait to get in to see one, depending on where you go. Again, I would go to a university hospital/clinic.

One other thing to think of also...Fibromyalgia is a disorder of the muscles and soft tissue where lupus attacks the joints, skin, blood vessels, brain, heart, kidneys and lungs. Yes the heart is a muscle, but fibromyalgia is in the muscles all over the body, most noticeably in the arms, legs, shoulders, and ribcage.

I do hope something here helps. Please keep posting and asking questions and do get a good doc help you.
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 10/9/2009 7:17 AM (GMT -7)   
Hi Rebecca and welcome to the forum. I am sorry to hear of the loss of your mom.
So sorry to hear you have Fibromyalgia and to be diagnosed at such a young age.
Mixed Connective Tissue Disease is an overlap of three autoimmune connective tissue
diseases. Fibromyalgia is not an autoimmune disease. If your mom had Lupus, and
RA, that would be considered an overlap, perhaps she had another CTD, along with
fibromyalgia. MCTD is typically an overlap of Lupus, Scleroderma, and polmyositis.
Fibro has not been classified as an autoimmune disease however there are many
researchers who believe it may be. There hasn't been a antibody connection yet.
I have MCTD. My overlap is Scleroderma, Lupus and in my case RA. Lots of bloodwork is done to determine if you have an autoimmune disease. When you have an autoimmune disease there are specific antibodies found in the blood. These antibodies destroy
healthy cells. In the case of MCTD the antibody is RNP.
Fibromyalgia and Lupus have some common symptoms, fatigue and muscle pain are
the big ones. If you suspect you have Lupus or MCTD you should get a referral to
see a rheumatologist who will do all the necessary bloodwork.
As far as comparing a fibro flare to a Lupus flare, I get burning rashes on my chest and
neck area, when my Lupus is acting up. Every case is differant though.
Hope you can see a good rheumy soon. Sending prayers and gentle hugs.

MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Post Edited (crazykitty) : 10/9/2009 9:31:08 AM (GMT-6)

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