undiagnosed, first post and sudden rash

[PennyRoseFlow]

hello all

so, I’ve had some joint pain for weeks and generally felt run down and exhausted. Pain became severe on Wednesday and Thursday resulting in GP sending me to hospital on Friday (worried about my heart).

Long story short, hospital doc thinks I have an autoimmune condition like RA or Lupus as he reviewed my history which has many, many bouts of this and severe inflammation (my marker on Friday was very high). He’s done more tests and writing to my GP but has said this all takes a lot of time.

Didn’t look into either too much as I feel rotten and just want to rest. Anyhow, felt a bit better last night pain wise and managed 5 hours sleep. Woke up at 5 with a rash all over body and torso?

I feel like my body hates me at the moment, like it’s annoyed with me and attacking. I’m worried about my GP as it took them a year to diagnose my autoimmune thyroiditis and I was so unwell during that time (this was 12 years ago).

I just turned 40 and started a new job and this all feels like pants timing. I’ve request an appointment with GP today as the rash freaked me out. The pictures don’t do it any justice.

I guess I’m ranting rather than anything else. I’ve got a long history of flare ups of unexplained illness and worried there will be many many more years of it.

[Tiggywoos]

hey penny rose

I wondered how you got on at your GP appointment to discuss your rash ?

Rashes are absolute nightmare and sometimes the only true way to find out what they are is to a have a biopsy which consultant dermatologist told me results are often 50/50 accuracy wise . My only advice would be to keep taking photos and get them printed off as Sod’s Law rash won’t be there when you are sat in front of anyone medical . Autoimmune diseases are a nightmare to “lable /diagnose as you know . I read on average it takes 7 years to get definitive diagnoses . Have you been referred to rheumatologist? Sadly it does make a difference where you live .. some postcodes seems to do well others shocking

Keep us posted . Big hug xx

[PennyRoseFlow in reply to Tiggywoos]

Thank you so so much. Since then, it’s been a week! GP on Tuesday was nice and told me to come back if anything changes, while requesting more bloods and chasing the hospital.

Then Wednesday my knees were killing me again and were red hot and had severe pins and needles. Saw a GP in person who said the same as you: document everything. She asked about my face as I have a “Malar rash”: I’ve always assumed it was rosacea.

Still waiting on initial test results but GP sending me to rheumatology regardless xx

[Tiggywoos in reply to PennyRoseFlow]

Ah I’m so glad gp was nice but my husband gets quite cross and says don’t care about nice need someone to do something ! With a bit of luck if bloods do show high inflammation and knees continue to be a nightmare nice GP might put you on a shirt course of steroid to tie you over until you see rheumatologist as you need to be able to function ! I’m sure you already know this but factor 50 on face and basically any other exposed skin . You’ll need dermatologist referral too as rheumy sometimes not interested in rash . Have you tried putting ice cubes in sandwich bag on knees or some peas 🫛 ?

It’s a horrible crappy process but you’ll find lots of self help tips on here . If you’re allowed antihistamines I found the Benadryl blue box was way better than what GP gave me . I’m not a Dr 👩‍⚕️ but I do sympathise . Where are you in Uk ? xxx

[Tiggywoos]

forgot to say I wish someone had told me this years ago but get copies of all bloods for your records . They may go on nhs app but often hospital bloods don’t . It’s so important to have them xx

[MusicalFurbaby]

Hi PennyRoseFlow, glad you found this forum and decided to post about your troubles. You’ve been through a lot and I’m sorry to hear this has been going on for years. Good on you for following up with the GP, and I’m glad they are being so helpful for you atm.

I can’t tell you what the future holds, but most people find that once they have a diagnosis, learn about their flare patterns and get on the right medications, the flares do become more manageable. You might still have flares in the future, but hopefully they will be a lot less intense than your previous ones.

The thing to do now is rest as much as you can, while you’re in a flare, and follow up with your oh-so-helpful GP about test results and options. If you are concerned about any new symptoms, or your symptoms become so bad you can’t manage them, don’t hesitate to contact your GP. It might be nothing, but your GP can order tests to rule things out and put your mind at ease.

Keep us posted, we’re here for you x

[PennyRoseFlow in reply to MusicalFurbaby]

Thank you so much. I’ve got a rheumatology appointment on Monday as my GP has been convinced I have RA but past 2 days I now have a thick rash on both cheeks and nose.

Either way I’m hoping they get to the bottom of it because I’m struggling so hard!

[MusicalFurbaby in reply to PennyRoseFlow]

I hope you do get to the bottom of it! Good luck for Monday 🤞