Chilblains/autoimmune issues?

[Simulacra]

I’ve been back and forth to the Nurse (no GP apps available) for over a month now with toe/foot issues. Tried steroid and anti fungal creams, hasn’t worked. Really painful, swollen, red, weird blisters on the nail beds/pads of my toes - I can barely put my shoes on - not ideal as I work FT (luckily can WFH if I want, but I’d rather not as lockdown isolation ruined my MH) and am a lone parent.

I saw a different Nurse today who was baffled and immediately said it’s chilblains, spent 10 mins asking me a lot of other questions and looking through my history and did obs, I’m female, mid 30s, white, BMI is 20, BP/HR normal, I don’t work outside, and has booked me in for bloods next week (rural so they’re only done on set days of the month). She said it could be thyroid, lupus, RA - but won’t know anything until the bloods are done.

Over the last 6 months, I’ve had the following

• hair loss (was long and thick, now shoulder length and thin)
• extreme fatigue (think newborn baby levels of exhaustion)
• muscle pains - as in my whole body hurts
• fever that keeps randomly appearing with no other symptoms (39C)
• severe headaches - I’ve never suffered with them before
• weird symmetrical rash on my face
• generally feeling really run down all the time

Managed to get 1 phone GP app in that time who brushed me off and said it was just my (very well controlled, under CMHT) CPTSD issues There’s probably other symptoms that I haven’t even considered symptoms too.

I’m very rarely unwell (have taken ABs around 5 times in my life and twice was for an impacted wisdom tooth that was eventually removed) and the last 6 months have been fucking awful. I have no idea about autoimmune issues.

How concerned should I be about this?

The symmetrical rash on your face makes me think Lupus. I have RA and have chilblains on my toes too.

How do you manage the chilblains? I’ve never experienced anything like it and it’s driving me bonkers. I was awake for 3 hours in the middle of the night with them hot and tingling.

I use sudocream but I've been hearing about something called snow fire cream. Amazon sell it and I'm going to give that a try.

I have all of those except the rash. I was told it's peri menopause.

For the chillblaines the trick is very thick socks, plus slippers. It's so painful. Massaging with warm massage oil and taking an antihistamine seems to help but I'm pretty careful now to avoid

I’ve got sjoegrens syndrome and have been suffering with chilblains recently. Thick socks and slippers as pp mentioned have helped loads (although mine don’t sound nearly as bad as yours) and iron supplements. You really need to avoid getting cold feet in the first place if you can.

I have lupus and it sounds really similar. Unfortunately I've heard first time referrals to rheumatology have huge wait lists.

Do you have private medical?

Should add I had chilblains in summer during 2020, nurse was quite baffled. Cosy socks and slippers almost all the time has seen them off.

Could be a lot of things - dermatomyositis is one.
As PP have said lupus another.
I hope you get answers soon OP - your nurse seems to be on the ball.

Sounds virtually identical to my lupus symptoms in the 4-6 years before diagnosis! You need to insist on an ANA antibody test and be moderately concerned. If you do have lupus, it could cause potentially life-threatening symptoms in kidneys or internal organs. However if caught early, the correct medication regime can slow down or even stop the progression of the illness.

Hydroxychloroquine worked miracles against the chilblains. It's the baseline medicine against lupus and my chilblains disappeared within 2 weeks of starting. They never came back. I'd occasionally get a tiny itchy bump under the skin of a finger but nowhere near the scale it was before starting HCQ. If it is autoimmune, then creams won't have any effect.

There is actually a form of lupus called Chilblain Lupus. I strongly suspect that's what I had because it was by far the worst symptom. I had all the symptoms you listed and only realised they were connected after they disappeared. Another symptom I had were aching knees and legs.

No private insurance but I have gone private before for a few things and will again if I have to.

My home is a listed cottage and I’m lucky if it gets to 18C in half of the rooms, and that’s with the heating on a lot (December usage cost me £400…). When I’m home it’s thermal leggings, normal socks, thick knee high socks over the top and slippers (if I can stand the feel of that many layers on, I’ve always been a barefoot person!) due to how cold the house is anyway.

My knees and legs hurt all the time, to the extent I’ve stopped going to my (very cheap and quite crucial for managing my MH) work place gym.

For the last two years I’ve been fobbed off with “it’s post viral fatigue” but I’m no longer buying it, and it seems the Nurse at my new GP surgery isn’t either (moved a few months ago).

I’m mostly concerned about being able to continue working, after spending 5 years doing a degree with an integrated Masters (including through the lockdowns), landing a well paid job that I love and am good at, going back to the benefits breadline is something I just can’t tolerate the thought of. I have no idea how I’d survive financially.