Can you help me identify the cause of my autoimmune symptoms?

[PseudoQuim]

Ok I'll try and include all the facts in the hope that somebody recognises what this illness might be... I've been ill with these symptoms for about 12/13 weeks now. I have been to my GP several times but he admitted he didn't know what was causing my symptoms and prescribed two kinds of antihistimines, which haven't helped. I've also had 2 lots of blood tests (still waiting for the results of the second lot).

Symptoms include:

• Severe widespread urticaria (hives) that come up in new places daily and take around 48 hours to go down, leaving bruises and burst blood vessels where they were. Some of the hives are huge or so numerous that they join together in massive patches and can cover a 2ft section of my trunk. I've had them just about everywhere on my body with the exception of my face.
• Joint pain, sometimes quite severe (e.g. struggle to get up or even walk or cannot bend my elbows)
• Very painful swelling of hands and feet (serious enough that I again have been unable to walk/put shoes on)
• Fatigue. I already have CFS, fibromyalgia and an underactive thyroid and this fatigue has at times been worse than I have experienced with those, so that's saying something!
• Cough

My GP is only interested in the hives because they are the only visible symptom and are so widespread they cannot be ignored. That's why he prescribed antihistimines even though we agree that it doesn't seem to be an allergy (no contact with known allergens, new foods, new washing powder etc). He said that my other symptoms are not related and tried to ignore them and focus only on the hives, but when I insisted that if that was the case then I had another problem and that those symptoms caused me more issues he placated me by ordering the second lot of bloods. Personally I think it seems to point to an autoimmune problem, supported by the fact that my CRP blood test came back as 12 (again GP wasn't interested if it was "under 50 to 100" although what I've read says 10 and above suggests an autoimmune condition and needs further investigation).

For more potentially relevant info, I am a 35 year old woman. As I said I am already diagnosed withan underactive thyroid (medicated and controlled), fibromyalgia and CFS.

Can anyone help point me in the right direction?

Could it be a form of urticarial vasculitis?

www.vasculitis.org.uk/about-vasculitis/urticarial-vasculitis

If you already have a diagnosis for Fibro and CF, could you ask your GP to refer you back to your consultant/specialist as well?

Also, I keep a daily diary of the symptoms and pains/swellings I have each day (my short term memory is rubbish ) but it does mean I can see if there is any discernible pattern - I also keep a note of how much I've eaten/slept/my activities to see if I can spot triggers for flare ups and so on.

I hope they get to the bottom of this soon

If you keep a diary, do a food diary as well, noting what you eat and when, and see if it's related to your symptoms. What have you for example eaten 48 hours before the hives broke out?

I was going to say Urticarial Vasculitis too. I have it (huvs variant) and the symptoms sound very familiar. There’s a FB support group where there are a lot of people more knowledgeable than me about it, would be worth joining and asking OP. My diagnosis is only a year old although I’ve had the symptoms for years, really hard to get a diagnosis as it’s not widely known about.

Thank you everyone for your replies. It definitely does sound like it could be urticarial vasculitis and I will raise this with my GP.

The diary is a good idea. I already take photos of the worst hives so could just take notes of food on my phone too.

To the poster who asked about being referred back to the CFS/fibro specialist; I've never had one. Was diagnosed at the hospital with CFS after being ill for 3 years, told I was a "classic case" and she "didn't know why I hadn't been referred sooner" and then proceeded to tell me that they could offer no help unless I was in a wheelchair or bedbound. Full stop. My GP doesn't even offer me any help, though tbh I don't know what they could do. I've been left to fend for myself.

I really hope the blood tests will show something so that my GP has to take this seriously.

Seriously that's ridiculous - not receiving proper medical support for what they already know you have could well be part of the problem.

Really hope they pull their finger out for you. Happy new year and all the best.

Thank you. I've applied to join the suggested Facebook group and am going to make another appointment with my GP (will probably take a couple of weeks before there is one though). I am not going to give up and get fobbed off!