Need some advise please!

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still_kickin_30
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 10/8/2009 4:52 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.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/8/2009 9:55 PM (GMT -7)   
I was told I have fibro and no autoimmune disease despite a high ANA and comps and autoantibodies to various things and vitiligo--which is always a sign of autoimmune disease--it is an autoimune disease. I think some docs are lazy, easier to write fibro and give psych drugs. With lupus, they have more responsibility.

Fibro doesnt cause physical symptoms, like skin pigment changes, malar rashs (the red rash on the face--the lupus rash), joint damage or physical damage. Your rheumatologist should be able to tell the difference, and you will figure it out. For me, fibro is just always there, makingmy pain worse, but a hot swollen shoulder, numbness in my arms, unusual new shooting pains in my legs, urniary tract or gi problems, liver and kidney problems, heart problems, and skin changes and sensitivity to light migt be indicators--not things fibro usually do to me. While fibro may increase the pain ni my legs, the pain has a cause, in my nerve roots. I also find my fibro is a dull aching thing, often all over.

Fibro is a last case diagnosis, so if you are having poblems, the doc should check them out thoroughly before writing them offto fibro. If your doc is blaming everythin on fibro, you may want to consult another rheumatologist and get some testing done to get a second opinion. My back was really bad and they tried to tell me it was fibro, but I knew something serious was physically wrong, and eventually thy found it.


The butterfly rash on the face and other rashes are a dead giveaway, fibro doesn't cause the rash in my experience, I'm sure others can chime in on this. Fibro doesn't cause pigment loss, hair loss, or hyperpigment either, according to what I was told. It is an enhancement of pain.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 10/9/2009 3:42 AM (GMT -7)   
your symptoms sound classic lupus to me also.Demand the testing you know should be done, even at the va you can fire your doctor,and register a complaint. We employ them,always remember that,we are not at their mercy,or laziness.you have done a wonderful thing for our country,we owe you,the doctors at the V.A. owe you for their jobs.I understand it is a difficult process at the V.A. but can be done,and it will give you something empowering to do while trudging thru it.Do they have advocates there that could help you find a new doc that will take you seriously? MY opinion-this is not fibro! Good luck, God Bless, Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/9/2009 7:20 AM (GMT -7)   
Rebecca, I answered you on the fibro forum.
Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/9/2009 8:33 AM (GMT -7)   
Check the resources page at the top of the lupus form and look for a site that talks about getting ready for a doctor's appointment. I would approach the appointment as I would any other: type up a list of your medical history, medications, symptoms, and concerns. And tell the doctor about your mom. A good rheumy will discuss all of this with you. I wouldn't go into an appointment with a new doctor and demand anything, which could alienate the doctor from the get go. I'd calmly discuss my concerns and go from there.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

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