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Autoimmune disease

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Lupus anyone ?

37 replies

AnyaMarx · 19/05/2023 02:40

So after months and months of thinking I had RA - doctor kept saying can't be - it's not in fingers or toes - it now seems it could be lupus . I've been like this 15 months now . Can't walk up or downstairs. Totally immobile and having to work from home (from bed actually )

The gp
Practice pharmacist rang me . My bloods are off .

I've got swollen , stiff painful knees and ankles really swollen and discoloured- purple in fact I have photos to show gp. Again .

I'm anaemic despite being on tablets (b12 )

I can sleep 18 hours some days and simply cannot wake up

I've got lung inflammation- coughing and wheezing doctor said I have asthma but im 51 and never had it before !

Had an ecg for heart pain

My finger tips are blue and I had a manicure recently- when my fingers went under the uv lamp it felt like I'd dipped them in petrol and set them alight - had to take hands out A's couldn't bear the pain and burning

I've had pneumonia.

The go have me a 5 day course of prednisalone for my chest - by day 2 I could walk - my ankles were better - I could flex my feet - now the course is gone it's flaring back up

My symptoms flare up without warning, and last weeks and weeks . The. Suddenly I find myself pain free and walking again - only for it to happen again when I try and go back to
Work

The pharmacist at my gp has booked me in with the doctor who
Specialises in auto immune because for 15 months I've been fobbed off - told it cannot be athritis as im too young and don't have it in hands or toes . They refused to refer me for further investigation. Twice now I've asked and twice been told to jog on .

Mr phmamstist wasn't impressed and said all points to auto immune.

Does anyone have any experience with lupus ?

My friends son is a hospital pharmacist and he said treat as if auto immune and see if it gets better- well the oral steroids definitely helped the joint issues which are currently rendering me immobile. I cannot drive , walk, I can't even take washing upstairs because I need both hands to get up the stairs at minute . It's awful. Wothin a year I've turned into a disabled old woman from a fit fit fit , active , healthy woman - I used to run , cycle , hittworkouts , hula , I look at the pics of me from a year ago and I could cry . I was lean, fit and Muscular.
Now I'm 2 stone overweight, can't walk , can't get upstairs unless it's on my bum or I have both hands to haul myself up. I sleep 18 hours at least 3 days a week . I can't be bothered to dress or wash hair . I'm stuck in the house . I get food boxes delivered. I can't visit family . I can't go to work . I can't walk my dogs . I can't do anything. Housework is too much . The washing is all in the kitchen because I can't carry it upstairs to the airing cupboard. My house is messy . Anyone here relate ?
What can do ?
How do I get a gp to take this seriously? It's all on my notes because they've been scratching their heads for months . The pain from the uv lamp had me Google - and everything fits .

OP posts:
CherryRipe1 · 22/05/2023 13:02

@AnyaMarx Gosh it's tough isn't it, the not sleeping seems to exacerbate everything I find. I hope the GP sees some sense, you've too many symptoms, it's just ridiculous & un-bloody-believable! . Is it possible at your GP practice to see another GP? As you say, getting it in writing (perhaps from the practice manager) re refusal is a step forward. Good luck & hope you get somewhere.

ColinRobinsonsFart · 22/05/2023 22:23

Looks like I have a diagnosis!

ankylosing spondylitis and sarcoidosis

having an mri scan and blood tests to confirm

well… don’t really know what to say. Apparently I am very ill ( consultants words) and probably have been for most of my life - possibly since I was 6 yrs old!

all of my symptoms have been ignored or attributed to something else or in my head 🦇

AnyaMarx · 23/05/2023 06:01

I've come out in a rash today all over my face .

I've sat and cried .

I look horrendous. I'm in so much pain. I can't sleep for wheezing(second night without sleep )

OP posts:
AnyaMarx · 23/05/2023 06:02

At least I have more
Photos for my appt with gp Friday . My face looks horrendous

OP posts:
Pinkprescription · 23/05/2023 17:09

I have recently been tested for lupus and was positive for ANA and DSDNA and had the malar rash and mouth ulcers but was still told it wasn't lupus - there are many false positive blood tests apparently.
I do have another 2 or 3 autoimmune conditions and there is so much overlap and I'm already on biologic therapy I am not too concerned but I feel ill a lot.

Softpebbles · 23/05/2023 20:25

I’ve just had a read through as I have struggled for what I classed as flare ups for quite some time. Always had low iron and when periods exhaustion hit it’s horrendous. Have a rash on my face too. I convinced my doctor to test and it has come back positive (serum Ana).

I have achey joints, quite often feel ‘swollen’ and bugs wipe me off my feet.

I am wondering what the next steps are and having read the thread feel like I’ve a long way to go until I find out what is wrong with me and can start to feel better.

Pixiedust1234 · 23/05/2023 21:02

AnyaMarx · 23/05/2023 06:01

I've come out in a rash today all over my face .

I've sat and cried .

I look horrendous. I'm in so much pain. I can't sleep for wheezing(second night without sleep )

I reacted very badly to an antifungal treatment which caused my Lupus. I had an all over body rash. My GP prescribed 2 different antihistamines and referred me to dermatology/rheumatology. Those antihistamines helped enormously with the rash and soreness until I got some steroids.

Fexofenadine in the morning
Hydroxyzine Hydrochloride 25mg in evening, its an old fashioned one which causes drowsiness which aids sleep.

What medication is anyone taking for the Lupus? I'm on nothing atm.

AnyaMarx · 26/05/2023 13:04

Finally my gp listened and has referred me urgently to rheumatology.

Only trouble is the waiting time .she advised go private .

OP posts:
CherryRipe1 · 26/05/2023 13:58

Well, glad you are finally being taken seriously by your GP as an urgent case but NHS waiting times are on the whole crappy, so sympathies there. Been waiting 15 months for a neurology appointment. Perhaps you could see if the NHS rheumatologist/s at the hospital you are being referred to has a private practice (most do) and go privately there then once dx (hopefully), get referred back to the NHS?

Astrantias · 04/03/2024 22:19

Goodread1 · 20/05/2023 02:54

Yes I can relate, before November 2019, I was working locally in a well known budget hotel chain,
I was struggling to keep up with former colleagues,
second boss, at that time,asked why I was slower than my ex colleagues, couldn't understand why,
I explained how I was feeling, said you just need a week or so ,
that was start of my nightmare in regard of my health,

discover I had Rumertoid Athritis and recently diagnosed with OestoAthritis too,

interesting infor @Coyoacan mentioned about naturopathy healing your friend, who lives in different country,

As, in certain some countries, are more aware of , or emphasis put on what you eat,affects your health, ect,

It's interesting cause Rumertoid Athritis, is auto immune disorder, and I find certain foods I have eaten, will trigger inflammatory reaction and make me feel stiff and extremely achy,and either my leg give away, or I have extreme throbbing pain or dull achy sensation ,

this is common with suffers of Rumertoid athritis

Also I read a book on a retired nurse back in the 80s era , who suffered from Rumertoid Athritis,
she was told, she would end up in a wheelchair and not to get married have children, Cause this is your prognosis,

she looked into her diet, western diet, addressed this eat healthier,
she passed her training course,went on to get married had a largish family of 8 children too,
I picked up book from charity shop,as love getting a bargains from charity shops,

Also there is a world renowned Author ,Psychologyist, his name Gabor Mate,
who had God Awful childhood, experience experincined Holocaust ect,

he has wrote, a few or several books,

Called The body keeps The Score, The Myth of Normal ect,

The body keeps the score book is about having unresolved Traumatic events happen to you, Whithout having the essential support or not enough support is detrimental to our bodies, immune system, for e.g having extreme prolonged severe stress for so long, has over time, a toxic effect on ourselves,

a bit of stress to complete deadlines, is ok,as motivates to make a effort to do activities, that need to be done,
But if you experienced extreme bullying at workplace over time and had other shitty experiences too, add in the mix, this will create accumulation, a back log of trauma,
also having just one Traumatic experience unresolved can have adverse ,negative effect.

hence why having immune health disorders, can happen and western diet, the unhealthy aspects, can have obviously bad effect on our bodies and can effect our emotional well being,

Gabor Mate Psychologyist is on youtube,Internet, he does a interesting talks about this subject, ect

Do you have the name of the book by the nurse? Thanks

Christmasbird · 12/05/2024 18:03

Hi, I know this is an old thread but I'm jumping on as I'm flaring up and under massive stress. I'm hoping for a bit of insight and symptom swapping as things have been really bad lately after a long period of remission
I'm 43 if relevant

CherryRipe1 · 12/05/2024 23:42

@Christmasbird I have Lupus's cousin Sjogrens but carry lupus predisposition genes. Stress causes inflammation as you probably know. I had a massive post Covid flare and use diet, mindfulness and exercise to calm it down. My inflammatory markers are now normalizing for the most part. Are you on any medication? It's awful isn't it, my sympathies.

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