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Reading About Lupus

Reading About Lupus

New to this site :) This is not a question but rather a comment regarding the diagnosis of Lupus and it's symptoms. :)

When I was first diagnosed with Lupus, a ANA test and others I told the Physician, a GP that I would worry about "that" (meaning Lupus) if I ever had any symptoms.

Almost three years later I began having problems walking, using my hands, washing my hair, I lost tolerance to cold in my hands and feet and my cognitive function had really gone south. I went in a few times over… read more

posted October 7, 2014
A MyLupusTeam Member

I literally diagnosed myself after years of chronic medical issues and misdiagnosis from every medical specialty I have been shuffled through. Now looking back at the last decade the mystery is solved. Everything that has occurred with my health fits perfectly into the Lupus puzzle. For me it has been a blessing and a curse. I cant believe it took so long and so much agony and suffering to finally get the the true cause of it all. Not until my hair spontaneously fell out did anyone even consider testing for Lupus or other autoimmune disorders. So much research and education needs to advocated for in the medical community and general society. So many years of suffering and harmful damage to our bodies and minds could be prevented with earlier intervention and understanding.

posted November 29, 2014
A MyLupusTeam Member

My suggestion would be to stop seeing your "family" doctor and get in with a good was the best decision I've ever made. (((Gentle hugs)))

posted January 19, 2016
A MyLupusTeam Member

In the last year I have lost my rheumatologist he is no longer practicing. I see a new one in June 2016. I have lesions and have been diagnosed with optic neuritis I see a neurologist who referred me to an ms clinic. I go on the 8th for a lumbar puncture which has me nervous. My family md thinks it is all nothing as nothing has been diagnosed. I tested positive for lupus ten years and again 2 years ago. The symptoms do come and go. The optic neuritis has not gone and is at this point in time is more manageable as I am taking naproxen. The unknown is what bothers me and the fact that all the specialists say you must refer to you family md who is not versed at all in autoimmune and thinks it's no real. Ugh...

posted January 3, 2016 (edited)
A MyLupusTeam Member

Lupus has put a grace damper on my life all the illnesses I have developed because of this horrible illness tmj.raynolds illness .habds feet hurt back neck .face swells face hurts horrible headaches .i also have fibromyalgia .my muscles joints skin hurt I swell up organ problems .infections that Wong ever go away .more symptoms developing .timgleinv numbness in my body neck shoulders habds feet legs I'm always in the docters .the internist said he couldn't help me I have lupus .its the most painful agonizing tricky .confusing illness there is .only a rumertologists can give u meds well there's not one here we are waiting.i have been diagnosed almost 4 years ago and I have gotten worse .life is hard.fepressoon confusion .foggy headless.moody.its all just getting worse.stress every day life is bad it causes flares .theg last days weeks months or days .u be Ed know when why of his long .every day is a challenge to live and do what I can for my
Family .they don't get it of care .lol it's do do do. Stress is the number 1 No no with lupus.but it's life every day is stress having this horrible illness that only gets worse .meds are not working .waitinv to see a runortlogist is hell they don't have one here lol do the longer I go with out the right meds the worse the illness on some meds but there not working any more .they say there's no guarantees the meds will work .lupus has a mind of it effects your blood work u might be normal then not normal then not .gave symptoms bug blood be negitive .so when docters see that they do t think u have lupus.when it comes back positive there like u do have lupus .no shif dick Tracey .i know my body .and all the pain and new symtoms .now my blood vessels don't let blood flow right threw my
Body .thats Raynolds that comes with lupus and so does fibromyalgia .and other shit .i suffer every day one minute till the next .therss no relief .i pray and pray and pray .but my body is still in hell and to me it's like I'm during slowly from the inside out .u look great outside .but inside your body is eating itself good bad and all cells .u tell me how to be happy when u feel like death .and nobody at home gets it .they expect u to be Norma and work and sorry I can't work I'm not healthy not strong body is sick very sick .then my mind is sad .and anxious and full
Of confusion .it sucks having these illnesses .and it only gets worse.if u have lupus and yours is mild God bless u .but if yours is like mine and its full blown bad .i know how u feel..try not to stress as hard as it is .i know .rest relax only do what u can .your body is not in tune with your mind any more .even rest u still get flares.i give up .but I don't .i just don't do any more .i do what I can .im exhausted every day .no energy .no strength or drive .its horrible

posted August 12, 2015
A MyLupusTeam Member

@ LouiseSwisher The Lupus Initiative, part of the American College of Rheumatology, has free continuing medical education units for non rheumatologist doctors. Check it out at The Directors of Health Promotion and Education have free webinars for patients, public health workers, etc. through the Lupus Education and Awareness for Patients, Providers and Physicians at Go to programs then select LEAP. Linda

posted March 26, 2017

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