Hi.some my knew me from back pain bit..help..I've... - LUPUS UK

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Hi.some my knew me from back pain bit..help..I've been so I'll thought I was going to die....

louiseamos profile image
9 Replies

OK so started when teen..leg feet muscle spasms though the night.got to 22 ish.back started..bad.then a bad sharp stabbing in chest when breathed in could cry..back got really bad.had a operation.. Low back.told had spine of 65 year old?OK .in between all this I had a big disc excursion biggest pain meds ever made me sick..had scan.told need operation but I've a lot of osteoarthritis. And scaral damage??.lost my antie .granda.dad only 55. Teribble death drink.. Few month letter ..waiting for my op date started to feel dizzy. Like worse then pregge dizzy..sweat pouring..I'll..elbow pain shooting pain in my joints. Finger swollen. Wrists couldn't move.. But no way could have my back cut open with all this..couldn't walk with pain..siatica ..any way went 2 rumotoligist.first said nowt wrong..second said I've scoliosis.. Yep ..knew..and why my gp off work.?I paid too see a doctor at Newcastle.. He was very concerned? Sent too there rumotoligist.. On first visit she gave me a injection...stopped the lumps growing in hands yes..OK told I've antiphospholid antibody syndrome. Undiffrent connective tissue disease. Probable lupus.thromboytopenia.malar rash.livedo.myalgias.arthralgias.inflammation .osteoarthritis.. So its no in my dam head..I am sick..rumotoligist gave me antimalarial meds..on morpie..pregapentin Max does..OK any one to speck too sorry so long .?been fobbed off all these years my gp says that's what wrong with my back..shouldn't of been opt on...fribo was told..anyone please advice my fingers very swollen.got lumps growing on my finger joint.they burn.hurt then there.i am very sick some nights. Can't move due to back in am?.life's crap at min .so tired..so confused...

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louiseamos
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9 Replies
Footygirl profile image
Footygirl

Hi

So sorry to hear of your troubles. You will get a lot answers and support here. It is no comfort at the moment I Know but most of us have struggled to get a diagnosis. You poor lamb. My heart goes out to you.

What tests have the doctors tried and what were the results? Did they tie in drugs to painful areas? There are a lot of knowledgeable people on here and the administrators will often write to help us.

Please take great care. You are not alone, so many of us know what you are going through and share your troubles. I'm sorry that I am not that experienced, but I just wanted to reach out to you to make a connection.

I will be thinking of you tonight. Know you are not alone.

Footy. Please leave a name next time.

God bless

louiseamos profile image
louiseamos in reply toFootygirl

Hi footygirl..tests ..I've purple hands.feet.low white platelet 11 year.I've that horrible skin thing.when stress or cold..I've a weriod brown big patch on back..lots of bloods..my face has a mild buttifle thing on face.constant sore mouth..got really had phumioia few year ago..hosptail after the 3 rd gp did owt..they were really concerned why I had this s.this had.even tested me RR cancer. HIV. All clear...?I was very I'll last year..sweating really bad.?felt have dead?got really bad back too?feet.leg pain..trobbs !!!!!.???li went from duty manager..530 am up.till all pm.in.3 kids..till now can't do much crazy.. Eh.....??

What's.your simptons..

louiseamos profile image
louiseamos in reply toFootygirl

Footygirl.?p.s I've had heart tests.waiting lung...tests..I've lost lots family members which stress don't help?my other half don't understand xxx

anjo profile image
anjo

Ooooooooo.....just read your post after adding mine....have a look it might just be relevant to your circumstances...you never now ....might help

louiseamos profile image
louiseamos in reply toanjo

Anjo..ohhhh yeah they did say it was a little low....???but gp wasn't to bothered???.I've morpie for a failed back op.preapentin sciatica...and weroid joint shocks???and rumotoligist now on malara tablets.I've had very low white blood platelet for 11 year..no one seemed to care till now...thanks

louiseamos profile image
louiseamos

P.s I've lost 2 babies.l at 20 week..and my babies got smaller..my rumo said this is norm ..with what I've got .?APS????

Fighting profile image
Fighting

I wanted to reach out to you. Apparently, you have issues from more than one disease. If there is a nurse or physician, you can trust, I would reach out to that person and have him/her help you prioritize the issues. I would also ask in the medical community what the root cause is? The medical procedures which were done, were done and can't be changed. Your task going forward is: how can you live most comfortably. Hugs!!!

louiseamos profile image
louiseamos

Fighting. Thank you for talking to me feel so alone.my memory is getting really bad too.I mean taking too many meds.has forgot.forget to make tea.. Put dishwasher tabs in washer.milk in cuburd. My grand dementsure.my granda 90.was her carer till he got very ill. Died few week ago.so did her mother have it..I can't have that too...I've bowel props.my spine is sinking in..what's going on.hate my self..

Fighting profile image
Fighting

Please get yourself on the message board. One of the administrators likely will help you. I am ignorant as far as computers and haven't been able to do it yet. I believe there are some professionals to speak to privately there. More hugs.

By the way, last year I had brain fog and could not have strung 2 words together. The more anxious I became related to my memory the worse it got. I also was tripping over shoe laces, spilling food. I trust now that I had brain fog and not dementia. Dementia does run on my father's side of the family and I am an age it could have been beginning. Let's add that there is quite a bit of press in the states related to early dementia. There was a play a few years ago, "Still Alice". The movie version played last year.

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