Give up undiagnosed

Doc just said because neg lupus blood despite all other problems ie facial palsy twitching fingers well everything I previously spoke of it’s just a functional disorder like computer software not working properly but not broken so don’t need fixing , you’ve coped this long so not serious 😩😩😩😩 so just had the worst flare ever of whatever it is for 2 weeks with eye dropping both going blue , ent sendinding for scan as ears nose inflamed with tightening burning head, difficulty breathing, painful real painful neck shoulder weird sensations in back arms fingers like stone feet toes can’t move chest pains heartburn reflux sore joints but it ain’t broke just disordered 😡 so what happens if I wait till it’s all broken.

As quick as these flares keep coming they fade so quick after couple of weeks? Does anyone else get this. Only each flare gets worse or seems to ?

[eekt]

Don't give up Stiff19, very many of us here have been in the same place...what bloods were done and was it a rheumatologist? There's a range of bloods that would point to lupus (but most GPs and some rheumies don't know that)...have a look at Table 5 in the UK guideline for SLE, see if you recognise yourself amongst the symptoms, and all the blood tests are listed there too: academic.oup.com/rheumatolo...

Lupus UK has great info on getting a diagnosis (and a free information pack if you go to the website), plus there's a fabulous pinned post here 'struggling to get a diagnosis'

Be armed with info and go back to your doc...medics will diagnosis fibro cos it's an easy answer xxx

[Hidden in reply to eekt]

Many thanks I looked at your suggested reading and yes I relate Thankyou. I have two weeks before I go back so I will go armed . Over 5 years with each problem I say this is not fibro, maybe fibro exists in me but other problems no link and even existing no match totally. I feel like fibro is an easy covering diagnosis, not to belittle anyone with it but I’m talking about my case and feel it’s just dismissive to get you off their books and save further investigating. I wouldn’t mind if every other possibility ruled out then say it but without examination or acknowledgement or investigation I cannot and I asked my go why she referred me and she said because of the way you presented to me and therefore why would she send me.its a puzzle I can’t complete because of missing piece, but I believe the missing piece is held by a health professional and I just have to find them to get it and my search will go on until I do. Thankyou for info I shall go back armed and if she hasn’t got the missing piece I will look elsewhere.

Your guidance is much appreciated 🙌🏻 Best wishes

[eekt in reply to Hidden]

That's the spirit Stiff! Medics WILL use fibro just as a label to get folks out the door: it's falls into what they call 'medically unexplained symptoms' aka psychosomatic....all the very best at your next apt, and let us know how you go! xxx

[Hidden in reply to eekt]

Thankyou I will definitely keep you posted.just been going through my diary’s been keeping and interesting to me even, each flare has been the same symptoms but more severe each time it seems and last few more symptoms too. Seem to come on with real stress time it seems or when family get bugs or colds, always something. A few years ago we went to Greece our first holiday in 7 yrs 😂 on the second day whether sun (can’t tolerate anymore) or stress (mother in law came) 😂 felt ill and urine real smelly and next thing ambulance then woke in hospital they said my organs were shutting down. In hospital for 4 days and told to see doc at home but as better by then they weren’t bothered. Now makes me wonder if linked as kidney lungs and chest seem affected with flares now. Seems strange too 🤔

Just thinking aloud , Thankyou for replying xx

[eekt in reply to Hidden]

What a terrible nightmare, and then to be dismissed by docs at home...Others have said strong sunlight have triggered it...trying starting a post with that and see! Hoping you have a treatment plan very soon! xxx

[Hidden in reply to eekt]

Thankyou 🙏

[chocolate_girl73]

Hi, I just wondered if your consultant could offer you an open appointment, where you can call for an urgent appointment when you next get a flare. Mine offered this, which is how I got my diagnosis. I totally get that flare don't always correspond with hospital appointments, but this was a life saver for me. Worth asking?

[Hidden in reply to chocolate_girl73]

Thankyou yes it makes sense doesn’t it I thought this and told her she needs to see me then but she said I’m very busy but I will push her again I see her in two weeks but will want answers or sending somewhere else the last two weeks have been the worst and most scarey yet. My gp is making but more of effort now with referrals to help but I had to upset her first. I did apologise last week and told her I didn’t mean to upset her but that’s how upset I am because I need answers and help. She said thanks it’s frustrating for both of us and I guess it is, she goes on rheumy who just orders battery of blood tests standard xrays for a year no physical examinations and 3 five minute appointments in a year. Never seen the awful flares and Thankyou yes this makes ultimate sense and I will put it to her but if same as always I’m looking for referral specialist somewhere . Thankyou you’re right I think it would help greatly 👍

[Hidden]

It might not be Lupus but could be other autoimmune such as Sjögren’s - which is more commonly negative in bloods than Lupus and often causes neuro symptoms too.

Personally I think it’s ethically wrong for doctors to diagnose functional disorders just because they don’t know enough - especially if the patient doesn’t relate to this suggestion. Very little is black and white in neurology or rheumatology and these doctors aren’t psychiatrists. It should be possible for them to say that they just really don’t know what’s up.

There are still so many aspects of immune system and workings of the brain and nervous system that doctors don’t yet remotely understand. Fine for them to say what they don’t think it is but they should leave the door ajar for further investigations and other possibilities.

Hang in there - I’ve had a taste of this myself and spat it firmly out! X

[Hidden in reply to Hidden]

Just adding, in beginning diagnosed palandromic rheumatism (long story) and given hydroxychloroquine. Helped a little but not having physical examination or any tests asked for second opinion. It didn’t help everything but had some impact but other symptoms persisted and not assigned to palandromic diagnosis.2nd opinion Rheumy said stop taking, later told just severe fibro .Symptoms worsened and few months after not taking had what I call flare and ALL other symptoms worsened So question being if hydrochloraquine helped somewhat even if not totally why did it ?and why is it therefore not given to treat fibromyalgia?

Strange.

[Hidden]

Thankyou yes it could be any number of things or more than one thing. I’ve had to stop searching myself as driven me crazy, I spent weeks thinking it’s in my head just get on with it but that’s the problem just can’t get on physically or mentally. I thought maybe stress induced therefore because anxiety depression but then go over diary’s and does not coincide in fact the stress comes with and after the flare ups. It does not equate. Physical signs are obvious to family and friends so no not in head either. Since finding this forum though and people like yourself I will keep pushing for an answer , it’s ruining any quality of life so there’s got to be a reason, even my beloved dog had an array of problems until diagnosed and finally got the answer but it didn’t take years either, but then we paid through the nose too 😂 I often say I’m going to go to the vets.😂 on a bad day I say I’m going to vets to be put down 😩

You’re right, that’s all I want , if you don’t know then send me to someone who might but not just send me away without looking at me. Not professional and not acceptable, I’d get the sack if I didn’t do job to upmost capability 😩 Thankyou and sorry for venting but yes I will spit it all out until answered. Best wishes 🙌🏻

[Hidden]

So sorry your so unwell. My flares are usually caused by food or medication it happens each and every time. Try keeping a journal of your symptoms and what you eat and drink. Every time I have dairy, wheat, sugar or anything not natural I start flushing, itching, fast heart rate, dizziness, bad tummy, nausea and a whole list of other symptoms and I have to go lie down and wait till it passes. I usually have to drink 2-3 litres of water and fast for a day then my symptoms calm down. When you do the diary write down the times you started and finished eating or drinking any thing and exactly what you ate or drank. then time when your symptoms start and end. I can guarantee for me I have my answers. Hoping you can then take that to a dr or rheumatologist for answers. I usually get “well because of your M.E (CFS), Fibromyalgia or lupus it’s difficult to treat and it could be anything setting it off or something else.” What use are specialists and drs if they themselves don’t have the answers. You your self have to do their job for them. 😂. Wishing you all the very best and I hope you get your answers and get well soon. Take care. Elena. 😀

[Hidden]

Thankyou kindly I shall track food too didn’t think of that, I am gluten intolerant. It was sunny here today and I went in back garden only for 10 minutes and it flared these rashes I have on hands 🙈🤔 I’m glad you have ur answers and I shall keep track of my food and wish you all the best . Els