Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,837 members • 28,177 posts

All posts for April 2019

Diagnosed.. Fibomyalgia and joint hypermobility!

Well after seeing specialist I have NOT got Lupus but he's confirmed I have Fibromyalgia and joint hypermobility.. Anyone who has ither and want to give me...

Well after seeing specialist I have NOT got Lupus but he's confirmed I have Fibr...

Jetblack1

•5 years ago

6 Replies

Dairy and egg intolerance

6 weeks ago I paid for a blood test to check for food intolerances. The company warned me there might not be a strong result as I am on hydroxychloroquine and...

6 weeks ago I paid for a blood test to check for food intolerances. The company ...

Hidden

•5 years ago

13 Replies

Wish me luck

Appointment day with specialist today... Hoping I get some answers I maybe very upset later if I come back home with no explanation as to how I'm feeling....

Appointment day with specialist today... Hoping I get some answers I maybe very ...

Jetblack1

•5 years ago

6 Replies

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Vet versus Doc

Ok, so I don’t take my dog to the doc’s and I’d be very alarmed to get a kiss on the head from a doc! But: last Saturday I had to get my poor houndrel to the...

Ok, so I don’t take my dog to the doc’s and I’d be very alarmed to get a kiss on...

Lupiknits

•5 years ago

23 Replies

Help again!!

Hi guys need your help again!! I don’t know if you can say here but does anyone know of a consultant who specialises and is an expert in complicated lupus....

Hi guys need your help again!! I don’t know if you can say here but does anyone ...

Carbar

•5 years ago

2 Replies

Pain

Hi all hope your all well I’ve had hip/ pelvis/leg pain for years and put it down to the unexplained hip joint problems I have, but now the same pain is in...

Hi all hope your all well I’ve had hip/ pelvis/leg pain for years and put it d...

Buckley123

•5 years ago

3 Replies

Butterfly rash 🦋

Hello everyone, ever since the rheumatologist have put me on some new steroids I have got worse and my rash is extremely bad, it burns really bad, I’m going to...

Hello everyone, ever since the rheumatologist have put me on some new steroids I...

Elishaannxx

•5 years ago

25 Replies

Blood results

I have noticed that quite a lot of people on here are posting about blood results, things being positive etc. My consultant has never told me or discussed my...

I have noticed that quite a lot of people on here are posting about blood result...

lizzy1976

•5 years ago

13 Replies

LUPUS UK Community Survey - Question Four - Your thoughts about fibromyalgia diagnoses.

Hi everyone, We've only got a couple more questions for this research study planned, but we're so grateful for everyone sharing so much. With all of these...

Hi everyone, We've only got a couple more questions for this research study pla...

Paul_Howard

Partner•5 years ago

118 Replies

Next week rheumatologist

Hi all, as I mentioned I started to see small rash on my face and dermathologyst told me that is it rosacea and it gets slightly worst on sun...so I am still...

Hi all, as I mentioned I started to see small rash on my face and dermathologyst...

Vekiqf

•5 years ago

2 Replies

Advice on getting medical records!!

Hi you lovely lot. Has anyone got any tips for getting medical records? Do you need to be really specific with your request? Has anyone requested theirs only...

Hi you lovely lot. Has anyone got any tips for getting medical records? Do you n...

whiteyswifey

•5 years ago

2 Replies

Has anyone had problems with the hydroxochloroquine and severe side effects and find steroids instead work better on their lupus symptoms.

So glad I made the decision myself to come off the lupus medication hydroxochloroquine after having dangerous side effects of all over rash, insomnia, fast...

So glad I made the decision myself to come off the lupus medication hydroxochlor...

Hidden

•5 years ago

49 Replies

Feeling better

After a round with a virus this past weekend, I am pretty much back to normal, well as normal as I can be. I went and checked on our gardens and we have...

After a round with a virus this past weekend, I am pretty much back to normal, w...

Tiras

•5 years ago

12 Replies

Unhappy with rheumatologist

Hi everyone, I'm not very happy with my rheumatologist and was wondering how difficult it would be to get a referral to a different one.

Hi everyone, I'm not very happy with my rheumatologist and was wondering how dif...

Biddy47

•5 years ago

4 Replies

Recognised disability

Is UCTD a recognised disability in UK?

Hidden

•5 years ago

6 Replies

Advice would be really appreciated in relation to getting my full GP medical records

Hi I dont have Lupus but am being treated for a couple of other dastardly autoimmune disorders and have found the Lupus site here one of best sources of info....

Hi I dont have Lupus but am being treated for a couple of other dastardly autoim...

robertbob

•5 years ago

21 Replies

I had to share this with you all. After days of feeling awful, today I decided to bake a cake with my 5 year old son. Oh I’ve laughed 😂

I hope you find this as amusing as I have. I may not be able to run over the park or climb trees , but I can do 1 better then that son . I can bake a cake...

I hope you find this as amusing as I have. I may not be able to run over the p...

Lisalou19

•5 years ago

28 Replies

Suncream

Good morning everyone, I’m going to the caravan end of may and I’m not aloud near the sun, where can I get special lupus sun cream from? Will my rheumatologist...

Good morning everyone, I’m going to the caravan end of may and I’m not aloud nea...

Elishaannxx

•5 years ago

11 Replies

has anyone had an infected parotid gland?

A lump appeared last Thursday just below my jaw. As I was suffering flu like symptons I was unable to go to docs until yesterday. I've been prescribed...

A lump appeared last Thursday just below my jaw. As I was suffering flu like sym...

tit4tat

•5 years ago

5 Replies

Dreading going back to work Thursday

I’ve been off work, initially ill, then taking leave for 6 or 7 weeks now. I had a massive upset with my boss and, because I was unwell I had a meltdown and...

I’ve been off work, initially ill, then taking leave for 6 or 7 weeks now. I ha...

marghay13

•5 years ago

2 Replies

I think I should just swallow this UCTd diagnosis. I’m getting mixed messages from different doctors, 1 says mri was fine, other says not!!

So UCTd it is. Maybe one day I will get the real answer who knows. I’m so tired of reading mixed messages. I’m tired one report of your hospital appointment...

So UCTd it is. Maybe one day I will get the real answer who knows. I’m so tire...

Lisalou19

•5 years ago

44 Replies

LUPUS UK Community Survey - Question Three - Were you told it was "in your head"?

Hi everyone, Thanks so much for your fantastic, enthusiastic responses last week. For all these research questions, please do feel free to comment on each...

Hi everyone, Thanks so much for your fantastic, enthusiastic responses last wee...

Paul_Howard

Partner•5 years ago

178 Replies

Lupus and a virus

Good Monday Morning! I have not been on for the last several days, I had an extremely rough few days, stomach virus I suppose, and still not completely over...

Good Monday Morning! I have not been on for the last several days, I had an ex...

Tiras

•5 years ago

15 Replies

Feeling a bit overwhelmed

Hi all, So after a very confusing and painful 18 months, I have been diagnosed with Lupus. I already had been diagnosed with APS in January so had already...

Hi all, So after a very confusing and painful 18 months, I have been diagnosed w...

AKLA-Bristol

•5 years ago

7 Replies

CoQ10 supplement for fatigue in Lupus?

Did anyone try CoQ10 supplement for fatigue in Lupus? If yes did it help?

miccika1

•5 years ago

7 Replies

Bruising & Rib pain

Does anyone with lupus suffer odd bruising on the body for no reason and rib pain?

Does anyone with lupus suffer odd bruising on the body for no reason and rib pai...

CROOD

•5 years ago

20 Replies

Any Treatment Options?

I was diagnosed 3 years ago with Lupus/Sjrogens/Hughes (already had Hashimotos's) This came on or was triggered after being hospitalised with severe...

I was diagnosed 3 years ago with Lupus/Sjrogens/Hughes (already had Hashimotos's...

sloppydog

•5 years ago

4 Replies

Is it ok to say I hurt?

In the US it seems now if you tell your doctor your hurt you get a stanky face. Due to all the folks looking for drugs it makes it hard for others to get help....

In the US it seems now if you tell your doctor your hurt you get a stanky face. ...

kcad64

•5 years ago

1 Reply

Anyone experience extremely cold sensations when laying down?

I normally feel this coldness in the back of my chest, then it kind of radiates into the top of my chest and disperses. Sometimes I get it up the side of my...

I normally feel this coldness in the back of my chest, then it kind of radiates ...

Lisalou19

•5 years ago

11 Replies

Skin thickening??

Hi guys I see my ent who went back to lupus as he said I had a rash he could see across my nose He also said that my swollen face looked more like skin...

Hi guys I see my ent who went back to lupus as he said I had a rash he could see...

Buckley123

•5 years ago

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Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for April 2019

Diagnosed.. Fibomyalgia and joint hypermobility!

Dairy and egg intolerance

Wish me luck

Vet versus Doc

Help again!!

Pain

Butterfly rash 🦋

Blood results

LUPUS UK Community Survey - Question Four - Your thoughts about fibromyalgia diagnoses.

Next week rheumatologist

Advice on getting medical records!!

Has anyone had problems with the hydroxochloroquine and severe side effects and find steroids instead work better on their lupus symptoms.

Feeling better

Unhappy with rheumatologist

Recognised disability

Advice would be really appreciated in relation to getting my full GP medical records

I had to share this with you all. After days of feeling awful, today I decided to bake a cake with my 5 year old son. Oh I’ve laughed 😂

Suncream

has anyone had an infected parotid gland?

Dreading going back to work Thursday

I think I should just swallow this UCTd diagnosis. I’m getting mixed messages from different doctors, 1 says mri was fine, other says not!!

LUPUS UK Community Survey - Question Three - Were you told it was "in your head"?

Lupus and a virus

Feeling a bit overwhelmed

CoQ10 supplement for fatigue in Lupus?

Bruising & Rib pain

Any Treatment Options?

Is it ok to say I hurt?

Anyone experience extremely cold sensations when laying down?

Skin thickening??

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