Hi All

[Meganx3]

Hi, I am new here. I feel so alone and down. I spent many years being made to feel like a Hypercondriac, I had Transverse Myelitis in 2007. Then in 2013 I had Shingles followed by Bi Lateral Pneumonia with several Pulmanry Embolisms in each lung. Then a month after that I was outside in the sun and my whole body erupted into a raised (crusty in places rash). I had a large variety of what seemed like random illnesses in between the more serious problems. For years I was told it was the menopaus. Then in 2015 my face went numb and my blood tests showed I was anaemic. I was sent to a Haematologist who did some blood tests which showed positive markers (for what I was not told). I was sent to a Rheumatologist who performed more blood tests (plus other tests). In May this year I was told that I had SLE Lupus & Sjogrens Syndrome. Most of my tests came back positive. I am still on steroids,Hydroxychloroquine and Vitamin D/Calcium tablets. I have been desperate to talk to others with my conditions. I feel like nobody really understands how ill I feel most of the time. It seems to be a case of 'well she looks ok, therefore she is ok'. I am so exhausted. After 5 hours I hit a wall severe exhaustion. I work and to be honest it's killing me, but I would go mad if I didn't have my friends around me. Thank you for listening, sorry I went on a bit (a lot) x

[Hidden]

You poor honey - it's so hard having these diseases at all, let alone having to fight for so long to be taken seriously, diagnosed and treated. I know - having been there myself too.

Five hours is my quota of time to function too, sometimes less. Everyone here will understand the fatigue and many will relate to the journey you've had to get here as well. The main thing is that we are both now diagnosed and believed.

However some can shrug the stuff we go through on route off their shoulders more easily than others. Or at least move on more successfully. Personally I am struggling to forgive and forget how some doctors made me feel. This is partly due to hating the idea that others will be going through the same issues and won't be in such a strong position to fight their corner as I've been.

I'm also struggling myself because so few doctors in the UK seem to realise how multisystem Sjogren's can be all of itself. Expertise in the UK seems few and far between if this is the primary disease - as it is for me.

So simply being diagnosed and treated isn't always enough - psychologically there's an element of post traumatic stress from having had to battle for years with doctors, friends and family to be taken seriously as well. Having this disease going unrecognised for decades has significantly slowed down and even blighted my artist career by taking up all my time and energy. I feel as if I've been living in a war zone that no one has ever been able to feel or see but me.

It also makes it very hard for us to trust those who didn't trust us. But hang in there, you are not alone. Twitchy x

[Meganx3 in reply to Hidden]

Thank you for your reply. You are so kind x

[babs28]

Hello there. I know how you feel I have had lupus for 9 years and I have dark days too.this site is a mazing and it's good to know that there are people here who will listen to you without judging you.feel free to chat anytime about good days and bad days.my name is barbara .have a good day 😆😆😆

[Penelope-Mary in reply to babs28]

Barbara we posted at the same moment...I include you in recognition as a like minded lupie 👍🏼😉

PM

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[Meganx3 in reply to Penelope-Mary]

Hi there. I love your message it made me ☺ x

[Meganx3 in reply to babs28]

Hi, i am sorry for my late reply. I have trouble getting onto the net at times. Its good to know there are others with whom i have so much in common. Thank you x

[Penelope-Mary]

You're with like minded people here, Megan. I'm sorry it has been a simple awful road to pave. And yes..outside there in the jungle, so few do actually understand or if they once did, they easily forget . Compassion fatigue is real.

As Twitchy said..the medicos are very much 'hit and miss'...sometimes you have a consult that makes you feel europhic and then next...it's a complete brush off.

Most of us have had to retire form the work force early and then feel a bit lost.

SLE / SS is debilitating , it's forever and it's not fair.

Gentle hugs from across the seas

PM

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[Meganx3 in reply to Penelope-Mary]

)))hugs((( to everyone x

[linda96]

Yes, Iv been there too! Not had the transverse ..., shingles or pneumonia but got a few extra syndromes and diseases to the lupus myself. For a long time I was made to feel a hypochondriac and sometimes now still am. However, Iv now decided anyone who thinks like that about me, is out of my life.

If there are things you feel that the medical profession has not explained to you adequately make an appointment with them and ask them specifically what tests they've run and why. Then ask the hospital to send you a copy of your blood tests and tell them you want it for your records. Iv done that and shown them the folder I keep all the test results in. Since April2016 you are entitled to receive this information. has your rheumatologist run tests for APS, reynauds, Sjögren's etc? These are co morbidities of lupus.

Hope you get on all right. Nice to meet you!

[Meganx3 in reply to linda96]

Hi, yes i have Reynauds and secondary Sjogrens. I have just seen a neuroligist who didnt seem to understand my understanding of why i was seeing him?! He did a memory test and told me i scored well and did not have early dementure??? I was not aware that is why he was suposed to be seeing me? Do i tried to tell hom about various areas of numbness i have had over the years and he shut me up. I tried to tell him about my eye too in which i have double vision and blurring. He did not want to know you . He snapped at me"go and see an optician"... I give up some consultants dont want to listen. It was my rheumatoligist who made the appointment with him. I do find it difficult to speak at times. I can slurr my words and sometimes stutter. I also find it hard to retain information i have just been given. Still, at least i know i do not have dementure. I am waiting for a brain scan. Why. I am not sure. Sorry i have gone on again. X

[Penelope-Mary in reply to Meganx3]

Oh Megan things are not improving at all, you poor love. Neurologists are notoriously difficult to consult, they seem to have a very high bar set, for which one must leap to be on their care and concern list 😳.

Your rheumatologist will have the report from him and hopefully re-direct you or possibly mx your symptoms?

All the best and hugs 🤗 from over the seas 🌊

PM

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[Musicteach]

I have a friend who is a GP and has developed sarcoidosis. He could not believe how dismissive his fellow doctors and consultants were, telling him what he felt and what he could not possibly be experiencing. It was a huge wake up call for him and makes one realise how far away from empathy a lot of medics are. I hope you will know that we all understand your feelings and that it is right to give in to rest when your body tells you to. I wish you all the very best. Carol x

[Meganx3 in reply to Musicteach]

Hi, and thank you.x

[Penelope-Mary in reply to Musicteach]

So sadly, oft reported, musictech 😼

[Squeeker]

Hi, you are not alone! I had transverse myelitis also some years ago and have lupus. I think we need to try to rise above it, we have lupus but it doesn't have us!

I have found Physio very helpful and gentle exercise combats the fatigue.

I really hope you feel better, don't let it rule you. X

[Meganx3 in reply to Squeeker]

Hi, i am going to physio in november. I have problems with my back, nerve damage etc. I dont know what they can do for me. I have put on so much weight with the steroids. I shall persevere. X

[Paul_Howard Partner LUPUS UK]

Hi Meganx3 ,

I'm glad that you've found our community here. I hope that you find it a useful source of information and support.

Are your employers aware of your lupus? Have they made any adjustments to help you manage better in your role? We have a couple of booklets about working with lupus which you may find helpful. You can view and download them here - lupusuk.org.uk/working-with... If you need physical copies, just send me a private message or email [e-mail] with your name and address and I'll pop them in the post for you.

[Mandagee]

New too the site myself.we r here for u.wen you need to rant .have quere about illness or medication or want to share the good days too.have needed to let off steam myself and I complain enough to my family and have lost most friends along the way with this illness.my friends here listen give words of kindness or bits of advice.was told recently to look up the spoon theory.it was like a lightbulb moment for me.hope you have better times ahead.

[Meganx3 in reply to Mandagee]

Hi. thank you for your thoughts x

[Lupiknits]

Welcome! You'll find many supporters here for you.

[Meganx3 in reply to Lupiknits]

Hi. I am looking forward to meeting everyone x

[Paulakdean]

Hi Megan. I have just been diagnosed with SLE and SJogren syndrome A lot of my symptoms was put down to the menopause or my psoratic arthritis which I have never actually been sure was right I was dismissed as a bit of hyperchondratict and I actually thought am I going mad I was just so tired of no one listening Although it was a bit drastic I am so glad I had a pulmonary embolism last year as I got sent to London St Thomas where I had lots of blood tests when it came back I had lupus and few other things I was so relieved that at long last I had a diagnosis for all my symptoms at least now I know what I am dealing with also on the plus side my GP surgery are quick to give me appointment when I phone now