Posts - LUPUS UK | HealthUnlocked

LUPUS UK

32,210 members•28,555 posts

All posts for September 2018

Hello, I' a newbie and need appointment advice, please

Hello, I am a 45 year old female with a history of painful joints, hands, wrist, fingers and knees which came on very suddenly with a rash about three months...

Hello, I am a 45 year old female with a history of painful joints, hands, wrist,...

Arcus13

•6 years ago

6 Replies

Sharing an uplifting song by Muse for those days when Lupus just needs it’s ass kicking quite frankly :) Anyone got any other suggestions?

Hi everyone, Just thought I’d try and share this track by Muse called ‘Dig Down’. I just think the words (and video) are just what’s needed on those mornings...

Hi everyone, Just thought I’d try and share this track by Muse called ‘Dig Down’...

Serser

•6 years ago

43 Replies

Doctors code words in medical notes

👋 I've decided I need to change my GP so I need to have notes disputing GP records of consultations added so my new GP isn't led up the garden path. Some on...

👋 I've decided I need to change my GP so I need to have notes disputing GP reco...

eekt

•6 years ago

44 Replies

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I'd like to congratulate my wife, Frances on completing her first ever half marathon for LUPUS UK!

Hi everyone, I'm really proud of my wife, Frances and so I wanted to share how we got on in the Great East Run yesterday. Frances wanted to help me raise funds...

Hi everyone, I'm really proud of my wife, Frances and so I wanted to share how w...

Paul_Howard

Partner•6 years ago

29 Replies

Bringing out the truth

Hi everyone, My sister told me that she read somewhere that this disease brings things into perspective. I’m still waiting for that to happen. I’ve gotten so...

Hi everyone, My sister told me that she read somewhere that this disease brings ...

Lili18

•6 years ago

13 Replies

I'm overdue a Rheumatology appointment - what should I do?

Hey, I last saw my specialist mid April and he said they'd see me in 4 months time but I'm yet to receive an appointment letter in the post. (It's now been 5...

Hey, I last saw my specialist mid April and he said they'd see me in 4 months ti...

eescvc

•6 years ago

11 Replies

Anyone else having problems getting doctors to understand what you say.....🤖

I guess many of us will know doctors don't understand words like 'fatigue' and 'pain'...but in a rare moment of human empathy one time, my GP said he said he...

I guess many of us will know doctors don't understand words like 'fatigue' and '...

eekt

•6 years ago

22 Replies

Embarrassing - breasts!

I am curious as to whether breast pain is in some way related to lupus? it is not related to menstrual cycle and i am not pregnant. Over around 20 days it has...

I am curious as to whether breast pain is in some way related to lupus? it is no...

cathylou

•6 years ago

5 Replies

Stress taking Control & Red Spots on my Torso

Stressed since my last post about being declined from seeing the physio and being passed back to the Pain Clinic (which I've heard nothing from) I've had great...

Stressed since my last post about being declined from seeing the physio and bein...

Ladyuponthelake

•6 years ago

6 Replies

Getting diagnosis

Can anyone help I have been going round in circles for 10years I’m at the end of my patience I have chronic bile malabsorption that’s meant I’m on powdered...

Can anyone help I have been going round in circles for 10years I’m at the end of...

Burnley1234

•6 years ago

2 Replies

Lupus Anticoagulant

Hi. It's a long time since I posted anything but I do read people's posts and find them very interesting. Still no diagnoses despite worsening of symptoms and...

Hi. It's a long time since I posted anything but I do read people's posts and fi...

Suecon

•6 years ago

11 Replies

PLEURISY/PLEURAL EFFUSIONUpdate

Just an update on my pleural effusion. Managed to get Rheumatologist appointment thru advice from GP. Saw him on Friday and was put on 6weeks of prednisolone...

Just an update on my pleural effusion. Managed to get Rheumatologist appointment...

Pipido36

•6 years ago

Be the first to reply

Take care with wifi

Apparently lupus sufferers can be electrically hypersensitive. They should be aware of the potential dangers of WiFi. Mobile phone use can present dangers....

Apparently lupus sufferers can be electrically hypersensitive. They should be aw...

overnighthearingloss

•6 years ago

7 Replies

Lupus nephritis

I’ve been having issues for a while with pain in my lower back, and top of my back, sore in the morning around Bottom of my stomach when my bladder is full,...

I’ve been having issues for a while with pain in my lower back, and top of my ba...

Jess_doyle

•6 years ago

3 Replies

PIP MANDATORY REASSESSMENT 😡

It's a smug no folks. I'll go to tribunal, using the same methods as before: friend who went to Assessment reads this letter separately then we'll put our...

It's a smug no folks. I'll go to tribunal, using the same methods as before: fri...

Lupiknits

•6 years ago

5 Replies

Hair loss with lupus

Hi, I have been diagnosed with lupus nephritis this summer and started my treatment. Two months ago my hair starting rapidly falling out. I can’t stop it, I...

Hi, I have been diagnosed with lupus nephritis this summer and started my treatm...

Ole_Vol

•6 years ago

9 Replies

Has the daily feed changed or have I messed it up? Help!!!

Haven't seen daily feed a couple of days, can anyone help; I'm not tech. savvy.

Haven't seen daily feed a couple of days, can anyone help; I'm not tech. savvy....

Annienjoe

•6 years ago

3 Replies

GMC Regional Liaison Adviser - 4 posts in England and Wales; 'Passionate about patient safety and medical education?'

Turned up these vacancies:...

eekt

•6 years ago

2 Replies

Advice !!

Hi just after a bit of advice really ! I got told i had lupus last October & has a bad chest infection over new year ! Was thinking about getting the flu jab...

Hi just after a bit of advice really ! I got told i had lupus last October & has...

Angela-78

•6 years ago

2 Replies

Campaign for Access to Specialist Lupus Care for People Living with Lupus in Pembs, Wales

1714 signatures now, which is great but we still need more. Have you all signed? Thank you Wendy xx...

1714 signatures now, which is great but we still need more. Have you all signed...

Wendy39

•6 years ago

12 Replies

SLE & Pneumococcal vaccine ?

Hi! My GP offered me a Pneumococcal vaccine. When I asked if it's live he said yes but NHS says otherwise:...

Hi! My GP offered me a Pneumococcal vaccine. When I asked if it's live he said y...

eekt

•6 years ago

20 Replies

Lupus featured on BBC1 Garden Rescue yesterday

Hi everyone, I thought that some of you may be interested that yesterday's episode of Garden Rescue on BBC1 had the team create a shaded and accessible garden...

Hi everyone, I thought that some of you may be interested that yesterday's episo...

Paul_Howard

Partner•6 years ago

5 Replies

Advice- steroids/skin biopsy

Hi been feeling bad since got back from hols and not getting any better. Have been given steroids. I have appt with dermatologist on Monday, so my question is...

Hi been feeling bad since got back from hols and not getting any better. Have be...

Benne09

•6 years ago

2 Replies

Last few places left for this event:

Easy to book on eventbrite: https://www.eventbrite.co.uk/e/patients-meetinglupus-hughes-syndrome-a-modern-epidemic-tickets-46536304339?aff=escb MaryF

Easy to book on eventbrite: https://www.eventbrite.co.uk/e/patients-meetinglup...

MaryF

•6 years ago

Be the first to reply

I’ll health retirement....advice please

Hi all, has anyone with lupus had to retire on ill health at a pretty young age?? (39y). I don’t think I will be eligible for PIP ( I have got the forms but...

Hi all, has anyone with lupus had to retire on ill health at a pretty young age?...

Sara_A

•6 years ago

19 Replies

Not been coping

I have Lupus and osteoarthritis along with a few other problems. Well lately i have not been coping well. My depression and anxiety have resurfaced. Just found...

I have Lupus and osteoarthritis along with a few other problems. Well lately i h...

teaparty

•6 years ago

28 Replies

severe headaches

for some reason I am now getting severe headaches and was told not to take aspirin, Motrin , Aleve, Motrin... what can you take with Methotrexate >

for some reason I am now getting severe headaches and was told not to take aspir...

kfmeme

•6 years ago

2 Replies

Rash with exercise?

Hi, I've just been diagnosed with UCTD. I think it was triggered in my pregnancy with my son, about 4 years ago. Since then I get a very red, itchy rash...

Hi, I've just been diagnosed with UCTD. I think it was triggered in my pregnanc...

Loopylou1234

•6 years ago

4 Replies

Are you sepsis aware?

Unfortunately I have just witnessed a dear friend of mine almost die from sepsis. I don’t want to frighten any of you but I thought it would be best to share...

Unfortunately I have just witnessed a dear friend of mine almost die from sepsis...

Lisalou19

•6 years ago

26 Replies

WARNING - THIS SCAM EMAIL WAS SENT TO ME VIA HEALTH UNLOCKED. REPORT AND DELETE IT IF YOU RECEIVE ONE. I'VE DELETED PART OF IT FOR SAFETY.

suesaunder Dear friend I am very sorry for using this media to contact you, i have prayed and fast before making this decision, just last week the doctor...

suesaunder Dear friend I am very sorry for using this media to contact you, i ha...

Kate-L

•6 years ago

7 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for September 2018

Hello, I' a newbie and need appointment advice, please

Sharing an uplifting song by Muse for those days when Lupus just needs it’s ass kicking quite frankly :) Anyone got any other suggestions?

Doctors code words in medical notes

I'd like to congratulate my wife, Frances on completing her first ever half marathon for LUPUS UK!

Bringing out the truth

I'm overdue a Rheumatology appointment - what should I do?

Anyone else having problems getting doctors to understand what you say.....🤖

Embarrassing - breasts!

Stress taking Control & Red Spots on my Torso

Getting diagnosis

Lupus Anticoagulant

PLEURISY/PLEURAL EFFUSIONUpdate

Take care with wifi

Lupus nephritis

PIP MANDATORY REASSESSMENT 😡

Hair loss with lupus

Has the daily feed changed or have I messed it up? Help!!!

GMC Regional Liaison Adviser - 4 posts in England and Wales; 'Passionate about patient safety and medical education?'

Advice !!

Campaign for Access to Specialist Lupus Care for People Living with Lupus in Pembs, Wales

SLE & Pneumococcal vaccine ?

Lupus featured on BBC1 Garden Rescue yesterday

Advice- steroids/skin biopsy

Last few places left for this event:

I’ll health retirement....advice please

Not been coping

severe headaches

Rash with exercise?

Are you sepsis aware?

WARNING - THIS SCAM EMAIL WAS SENT TO ME VIA HEALTH UNLOCKED. REPORT AND DELETE IT IF YOU RECEIVE ONE. I'VE DELETED PART OF IT FOR SAFETY.

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