New to this age 63

[labx]

I've had 2 horrible flares awful joint pains along with head to toe body rash. One in 2020 one in 2022. Now have another rash but slightly different and fatigue is overwhelming with pains in joints. I had some bloods done think they are for auto immune and have appt with gp tomorrow. Have itchy dry skin and dry mouth. Anxiety is dreadful. My sister has lupus and surjens sorry can't spell. I work for nhs retired and returned 15 hours, a week from home mainly. I'm finding it difficult to drag myself out of bed this time. Gp was sceptical about auto immune but did bloods for me. I'm at a loss with this and can't deal with it.

[KaraKim]

Very similar experience to my own. I'm in the process of being diagnosed by rheumatologist, he says blood tests confirm RA, had a new letter for clinic today so not sure if it's Lupus yet but from my own experience and research I think I have it. Industrial action in the NHS has made things harder appt wise so I expect it'll take a few months for a firm diagnosis.

The angry rash I had ( from torso to ankle) late Dec has disappeared for now - looked like measles. My first experience of spots/rash was in 2015. The pain in my joints and absolute lethargy has been going on since 2015 - certainly affected my working life. Experiencing swelling/water retention too. I'm unable to go to the loo sometimes so can't take too many painkillers, codeine seems to make constipation and weeing harder. I've started using CBD oil in the evenings, reduces pain but I can still go to the loo. Co cods work on morning stiffness and pain, the steroids have helped but I've had those for COPD - the more I look into Lupus I think my lung problems are connected. Anyway that's me for now - I'm certainly having brain fog so I'm babbling!! Just reaching out as a newbie to this condition.

[MusicalFurbaby]

Hi Labx, I’m so sorry to hear about your troubles. The rashes are awful (I’ve had my share) and the pain, fatigue and anxiety on top of it make life pretty difficult. It sounds like the pain and fatigue are bad for you at present and I can certainly relate to feeling anxious about tests, diagnosis and trying to work.

I’m glad to hear your doc is helping, even if they’re not convinced at this stage. See what comes of your bloodwork (and let us know!), it’s by no means definitive, but sometimes gives us clues as to what could be happening. What you probably need is a referral to a rheumatologist, they are the ones equipped to look into AI disease.

In the meantime, welcome to this forum! We understand how you feel, so please feel free to post here any time. This is a safe place to ask questions, get advice and simply vent. All the best to you—you’re not alone. 🌻🌈

[dg70]

Hi, make sure you get to see a Rheumatologist as has been said. Waiting lists are many months long so many of us have an initial appointment privately. I am not sure what blood tests your GP has done but I never had autoimmune specific ones with them. It was only the Rheumatologist that did the ro/la and dsdna specific to autoimmune activity. You can still have negative blood tests but still have an autoimmune condition so you need a specialist who will look at symptoms as well. I am negative on nearly all blood tests at the moment except for a positive dsdna but that came down once I was prescribed hydroxychloroquine. Find a Rheumatologist that is expert in autoimmune diseases and if you go private get your bloods done back at the GP which is free as bloods done privately cost a bomb. Your consultant will give you an envelope for the GP to take the bloods for them. Keep a diary of your symptoms and take pictures of inflammation etc. As much detail as possible helps when you see the consultant and saves time. Even private specialists seem to have at least a three month waiting list so I dread to think what the nhs waiting list is like. You can go back to nhs after this appointment if you want to, just ask your GP. It's so important to research and find the best Rheumatologist you can to have the best chance of a diagnosis. I have stayed private for the moment but applied back to NHS but as yet, several months on, I have had no contact from the nhs Rheumatologist. I hope you get answers soon.

[labx in reply to dg70]

Just home from GP all bloods clear however referred to Rheumatology

and asked for bloods for Igs +SPE Serum FLC C3/C4 which only the hospital can ask for. She has also referred to a department for a tremor which she noticed in my hands. So we will see. I had noticed a bit of a tremor when typing or carrying cups so who knows. I might see how long the waiting time is for Rheumatology and get a diagnostic appointment once all my bloods are through.

[dg70 in reply to labx]

Glad you got a referral, you are on your way! I pay around £150 per 30-45 minutes with my Rheumatologist. If you need a recommendation then put a message out for a recommendation in your area and someone will know a good one hopefully if not quite a few travel to London specialist centres. You can enquire about fees at any private hospital switchboard. My hospital has a private wing which is cheaper to visit a consultant there than say than BMI, Circle or Spire but not many hospitals have that option. The internet has plenty of info on consultants who are nhs and private and what they specialise in within their field. Hope that helps.

[Doomer]

Me too .. im soo so sooo dog tired , i itch all over , this is embrassing but i have had itching in my bottom area an my butt crack is sore an breaks open im so depressed i have so many horrible symptoms itch itch all the time all over , never feel good , i get a day where i feel good an very short lived im so tired od all thiss.

[labx]

Can anyone recommend rheumatologist in darlington area who has good working knowledge of auto immune disorders. I have struggled today severe pain in both knees and burning skin. Couldn't even take my lovely lab out for a walk in fact didn't even get dressed.

[labx]

Managed to get a cancellation for rheumatologist appt for tomorrow. I am itching all over I have stopped my amlodipine as its been worse since on that. Skin is so dry and one side effect of amlodapine is itchy skin and a aching joints. My knees are stiff and purple. Will update after appointment tomorrow