ME/CFS and Lupus: Just interested how many of us... - LUPUS UK

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ME/CFS and Lupus


Just interested how many of us have been given a diagnosis of ME prior to Lupus? I was diagnosed ME first but have now been told I have Lupus

11 Replies

Me. I was diagnosed with ME by a consultant but my GP immediately told me, so far as he was concerned, the condition doesn't exist and is "all in the mind" so not terribly helpful. When I was eventually given the correct diagnosis of SLE, the Rheumatologist was rather bemused when I asked whether it was, in fact, a "real" or "imagined" disease!

ME isn't diagnosed by that name in the states. It's still CFS and laughed at along with fibromyalgia. I've been dx with SLE for 20 years now but swear a dx of ME should be added. Not that either will do me any good.

I was told I had ME, which I believe does exist, but my Rheumy is sceptical. Now been re-diagnosed as CNS Lupus

I was also diagnosed first with ME by a GP. When I later saw a rheumatologist, & asked her about this she said she had never heard of it! But I now believe it was lupus all along, as I have had auto-immune problems all my life.

I really do feel for those with an ME diagnosis, who are basically left to fend for themselves. At least we, as lupies, do have some treatment options once we get a diagnosis.

Over the years I have developed a very strong suspicion that ME may not exist. Controversial, I know. I was also MISdiagnosed with ME by a lazy ignorant doctor for over 15 years before I got the correct diagnosis of APS and Sjogren's. So, like Sher and others here, I firmly believe that's what the problem was all along. And I just wonder if ME isn't really a symptom of other disorders, such as Lupus etc. rather than a condition in its own right. And, if so, it behoves medics to dig deeper and look for the underlying cause of chronic fatigue rather than just accept it without any further curiosity or investigation. I feel an awful lot of people are being essentially abandoned with this label when they could be helped.

I certainly believe it exist but shouldn't be dx without the long list of test recommended by the MEA. If those test and recommendations were followed then misdiagnosed cases would be near impossible. As they say, don't tell a patient they have this horrible, non curable, low treatable disease when they might have something curable!! I guess with me goung in reverse of you having my lupus dx first I can assure you what I'm going through now is nothing like my lupus has ever presented itself. It may not be ME granted. But any disease that has a testing and dx protocol as thorough as ME is certainly a real syndrome. Just because ignorant doctors have misused it out of laziness doesn't make it any less real to those who truly suffer. As someone with a hard to dx disease you should be mindful of that and change your stance to "doctors misuse the diagnosis", not exclude it from being real.

I wasn't saying ME isn't 'real' in the sense that the symptoms aren't real. What I was saying is that I fear many people with very real symptoms experiencing very real suffering MAY be being badly served by a diagnosis that MAY not be complete. Please don't tell me what my 'stance' should or shouldn't be - it's an opinion.

Hi, i have had Lupus since i was 16 years old i am now 38. My dad as been told he has ME but he gets a lot of problems which is the same as mine so i think he should be test now just in case. When i was little i had bad legs but doctor told my mum it was growing pains now my daughter keeps getting leg pain. LUPUS is one big pain and people look at you like it is in your head but they can't see whats happening in side of you.

I was also diagnosed with ME by a private consultant after years of fainting, pain, lethargy and breathing problems. During this period before the diagnosis of ME I think my GPs believe it was all in my mind as no tests they did showed any illness. I saw a lung consultant privately who said I had Asthma, and started me on treatment for asthma. However it made no difference to my breathing and I was still fainting and had a lot of chest pain.

Eventually he decided I should see another consultant who knew about ME. Once I saw him and he decided it was ME and he told me there was no treatment but I should know my limitations as to what I can and cannot do and stick to it.

This really helped a lot, my GPs started to treat me with respect and believe me when I went with a new symptom.

The nineties was when I was told I had ME but I had all the symptoms of lupus from a child and 2006 I was finally diagnosed with lupus and 2007 I was told it has damaged my lungs.

And me. I was diagnosed with ME/CFS back in the late 80's when it was a headliner. I had had a glandular fever type infection and didnt recover. Looking bakc though, my immune system was failing before this. I had chicken pox and german measles and had become alergic to a lot of stuff through the second half of the 80's.

Took a long time to get my lupus diagnosis in 2004.

M.E is a real illness!!!

& very very difficult to live with, effecting every single little thing in ur life!

There is 3 main differences on brain scans!

Along with other physical tests,

It is now discribed as a mix of MS, Lupus & lymes disease

But no cure or treatment yet!

It is physically neurological & autoimmune

I have had this horrible life destroying illness for over 20yrs since i was 11yrs old

1 of the worse things to deal with is attitudes like the ones seen on here

Imagine u had a broken bone & every1 told u u were just imaging it cos u were lazy

This attitude towards an illness that is hard to understand makes those of us with the real ME hide!

& be scared of ppl reactions,

Pushing friends & strangers away

Isolating are selves

Making cover stories to hide symptoms from ppl

Wake up!!!

Just cos an illness isnt understood fully dosent mean it doesn't exist or that those of us who have r lives destroyed by it r lazy & making it up!

U need to realise how extremely damaging that attitude is!!!

Just cos U dont understand sumthing doesn't mean it doesnt exist.

Please, b4 posting such negative comments about things u dont understand,

Have a look on the internet, the hummingbird foundation for ME is a good start,

Just dont tell ppl that r exteamly ill, that U think think they are lying!!!

M.E often leads to Lupus,

I have both, along with a few other complications

Lupus is more manageable

Please, just think first

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