Lupus - does anyone with fibro also have this? Interested as I’m sure I do...

[Han1976]

Hi - does anyone worry they have lupus which isn’t diagnosed? How do I get the test in the UK? I have all the symptoms when I read up on it x

[desquinn Partner Volunteer FMAUK Trustee]

have you checked here: healthunlocked.com/lupusuk

[Dinkie]

It's normally diagnosed by ANA blood test and rheumatologists input. I have family history of Lupus but still diagnosed with fibro which I feel is correct.

[happytulip]

Lupus us diagnosed more on a collection of 11 criteria and blood work. However, you can have completely normal blood all for your life yet still have lupus. A positive ANS test can indicate lupus, although a positive ANA does not mean you do have lupus.

Part of the reason that you can have lupus and your bloods be normal is because alot of us lupus patients also have immune deficiency so the inflammatory markers in the blood don't appear as in a "normal" patient. Sorry to use the word normal, what is normal anyway?

It is notoriously difficult to get a diagnosis of lupus giving the complexity of the disease and the mistunderstanding of the condition by physians.

The average time for a diagnosis is 7 years, in my case it was 32, I was born with it.

My best advice would be to have a look on the lupus HU page and actually also look on Lupus UK too. They have so many leaflets that you can download.

Paul Howard, CEO is really helpful too. If you email him he might be able to answer some questions and give you a list of Rheumatologists who specialise in lupus. Many Rheumatologists only deal with arthritis and don't have much to do with SLE but there are more and more specialist centres opening up.

I hope that goes someway to helping.

In my opinion, if you have a feeling in your gut then follow it because we know our bodies the best.

Good luck.

[Han1976 in reply to happytulip]

Wow thank you / that was a really helpful reply, I’ve only just joined and didn’t know if this forum would be of any use, that is brill. I will look into this further - thank you so much x

[sidsue]

My mother was ill for many years, she had very bad psoriasis, she kept collapsing especially while under certain lighting, she couldnt go in the sun, she had a mental breakdown, lots of visits to the Dr and admission's to hospital,. The Dr then said she should be sent to a Mental Hospital .. after 3 weeks of saying this ..one night there was a knock at the door about 6pm ..the Dr was at the door.. he apologised to Mam and Dad and told my dad that one of the blood tests he sent to away for testing 'rare disease's had come back as SLE.. an appointment was set up with her Heart Specialist as she had to have a heart bypass...and a R.A. Specialist After the operation she was put on steroids the only medication they thought would work... this was 40 odd years ago.. I think she was the only one in the north of UK that had SLE. at this time..Over the years she had thyroid problems ..she had an operation for her goitre but they took too much away so she had to be on high Thyroid medication to counteract the under active thyroid.. she never got any better, then she was also diagnosed with Fibromyalgia about the time I was ..she was bed ridden in her late 50's as she always had to rest..due to brittle bones caused by the steroids, she was having tummy problems a hiatus hernia she had to be careful what she ate due to little lining on her tummy..' too high steroids again '..I have under active thyroid, ostio-arthritis and fibromyalgia, I go to get bloods done every 6 months, I always ask for SLE to be added due to my medical history...My Grandmother was ill for many years, thyroid, she had an op to remove her goiter, many years ago I was about 7-8yrs I think.. heart problems and angina but we often thought she may have had SLE too.. by her symptoms the Drs tell and told me SLE was not hereditary, but now we are told it may be, now it is a possibility ...many have been diagnosed with SLE now- ..medication has improved.. and blood tests are better at finding rare bloods...I am not in the best of health am nearly 65 yrs myself now, so really not sure if I want to know if I have SLE, but for the younger sufferers out there, keep plugging, keep information updated constantly.. Lupus mimics many other illnesses...so regular blood tests approx 3-6 months are as it hides.. unusual bloods .. 2 out of 3 are needed to investigate further .... fo

[Shirls12345]

I'd say ask for a referral to an immunologist. ... that would be their area... failing an immunologist appointment try for a dermatologist.. similar fields and they can often have much shorter waiting lists... you prob wont get a diagnosis from a gp... you'll need a specialist for that.

[happytulip in reply to Shirls12345]

Immunology plays some part in some lupus patients but it's a Rheumatologist who looks after lupus patients. Unfortunately there is a shortage of Rheumatologists that have the expertise about lupus but more and more centres are opening.

[Shirls12345 in reply to happytulip]

To the best of my understanding lupus is an autoimmune disease ...

.. Yup I've just googled lupus definition there and the definitions are all coming back as 'an autoimmune disease'...

But I suppose a lot of arthritis is caused by the immune system attacking our joints so I do understand why rheumatologists would also have an understanding of the disease... so that should be a good route for getting a diagnosis too. The important thing is to get to a relevant specialist who can give a diagnosis...

... isnt this a great resource where together we can come up with lots of avenues to explore for each other. 😄

I do hope you get a diagnosis and the support you need it's awful when your immune system start to attack you... I've been there too. X

[Han1976 in reply to Shirls12345]

Thank you / and thank you to everyone who has been so kind to reply - I’ve only just joined this forum and everyone is so helpful... I have so many problems I could write a book - I’m sure we probably all could on this platform. I just know that although I have all the markers for fibro and have been formally diagnosed by a rheumatologist and doctor I also have many of the symptoms of lupus which differentiate from fibro. Don’t get me wrong, I don’t want another diagnosis but I do want to get the best package of care. At the moment I have to see 3 doctors / 2 privately to receive the correct prescriptions for my current diagnosis as some of the treatment medicines aren’t available in my area due to my postcode - so many things I could scream about!! I have to pay privately to get some of my treatments and I’m far from rich.. anyway I’ve gone on a tangent!! Thank you for the support everyone I’m glad to be here x

[happytulip in reply to Shirls12345]

100% correct Lupus is an auto-immune disease whereby the immune has gone haywire and starts to attack your body. Systemic Lupus Erythematous is the full name for lupus indicating that it is a systemic disease but you can also get discoid or cutaneous lupus which affects the skin and a dermatologist is much more involved in that.

Us Loopies are looked after Rheumatologists because if the muscular Skeltal.aspect of the disease. You may not have lupus but you might have a connective tissue disorder and this is something that is best diagnosed and treated by a rheumie.

Sometimes you also need to see an immunologist and they do work well together trying to eek out any immune deficiency which would be hard if you are on medication to moderate a funky immune system.

Lots of people with lupus also develop fibro, I think it's around 60% but don't quote me on that.

I saw 2 Immunologists who told me.i was just run down before I saw a Rheumatologist who diagnosed me within minitues. And there can be a genetic component, 7 of my cousin's have it. A family get together is like an AI convention day!

Thanks for letting me share my experience with you. I know what it is like to know something is wrong with you but not get treated. I've had my diagnosis for 6 years now and am learning each day. But I am ashamed to say that I worked in medicine before I was medically retired and hardly knew a thing about the disease.

There is a big gap in the knowledge of most physicians sadly. But with time I hope that will change.

[Shirls12345 in reply to happytulip]

You have taught me a lot there. Thank you. I went to see an immunologist for my diagnosis of angioedema... with a history of cold induced urticaria and cold anaphylaxis... asthma, hayfever and dermatitis trio.

I'm hyper mobile, have a hiatus hernia, severe gi difficulties, prolapse stuff (seems to also come with the turf)...

My daughter has so many of the above issues also along with a severe scoliosis that comes with her Hypermobility... on her files she is listed interestingly enough as having the 'connective tissue disorder' you mention above...

There do seem to be definite patterns in this thing...

It's a pity medicine treats each individual areas symptoms rather than the holistic picture most frequently... I guess we each have a responsibility to ourselves to do our homework too.

That post has been so helpful... I need to get me to a rheumatologist. 😄

Thank you.

[Shirls12345 in reply to happytulip]

Please do share your experiences. They're honestly really interesting, well informed and thought provoking... It's nice to not feel alone in this isnt it.

🤗

Here's a lil very distant support group family hug. We're doing great 😁...

.. from another medically retired lifetime carer of others who's trying to learn to admit I need to care for me better now. It's nice learning how.. new adventure..

Blooming diet next... autoimmune I think. I got a wonderful link on another post here.. it's a mine of information this site. 😁