At a loss, multiple consultations still no answer...any idea?

@athenalee Thank you for your positive input! Becky

That's reassuring, thank you. I'm just baffled as to how I can feel so bad for 5 months to then feel how I do know. I just had this strange notion that they wouldn't be able to detect anything due to how I am now, but that obviously isn't the case. Perhaps the supplements I've been taking have done some good. With your symptoms do you have days where you feel almost "normal".

There are days when I have more pain, which typically corresponds to days I grocery shop, stand on my feet for extended hours, garden, etc. I do also have days that I have less overall symptoms for a period of time, then they return and I have days that I get different symptoms that disappear. I’ve determined over the past two years that bodies can be extremely weird and autoimmune diseases especially so! As @becsbuddy says…I keep my symptoms log.

That's good to know, cheers for sharing it. Very strange indeed, no wonder they are so difficult to diagnose.

I must praise John again, increasing my supplement intake has massively helped and I wouldn't have done that if it wasn't for that article he linked. Hopefully you'll get a full diagnosis soon, at least we are heading in the right direction.

This is what I found on butterfly rash on the internet: It is often seen in lupus erythematosus. More rarely, it is also seen in other diseases, such as pellagra, dermatomyositis, and Bloom syndrome.

Hello @terri672.
When I went for a consultation with a dermatologist they diagnosed me with rosacea. As I've not been out as often due to how I've been the rash isn't as severe as it was. So it would seem that the sun triggers it. I do think there's more to it - where a rhumatologist would have a better chance of diagnosing it.

I’m supposed to avoid the sun due to one of my anti rejection meds, as it can contribute to skin cancer. So, typically I do. But I’ve been working in my garden in the early morning and later afternoon, when the UV is lower. I developed a rash over my arms both times. I discovered that Sjogren’s can cause it. So, maybe rashes are one of those odd things that can occur with different autoimmune diseases?

Glad yours is better!

It really is life changing, it's awful how you can't do what you want to do. I'm similar in that the heat and or the sun exacerbates my symptoms. So these days I won't venture out until dusk.

Or perhaps the UV causes autoimmune diseases to those who are susceptible? When looking back at old photos from 12-16 I'd only go out for a few hours to play football where no rash was present. From 16 to 22 I'd play golf most days, this is when the rash started. It could just be a coincidence with time and age but it does make me wonder.

I'm sure we'll get it sorted, hopefully those that see us will have the knowledge we require.

I had a similar rash to this, all of these symptoms plus random bruising, every joint hurting, muscle spasm, cyst or moving calcium build ups moving in my body, brain feeling like it is on fire, chronic 24/7 pain and more symptoms than I can think of right now. I owe everything to where I am for finding a psychiatrist who wanted to do an Organic Acid Test and testing for Mycotoxins of Mold (other biotoxins are on there too I believe). Part of my issues are that I’m part of the 25% of the population that can’t rid it’s body of toxins.
Look up Neil Nathan MD and see if there are any doctors he recommends near you or Ritchie Shumaker, I’m thinking you could possibly have CIRS.
I had a western doctor/Acupunturist tell me this week that when your liver or body can’t process something one reaction is through the skin via rash, sensitivity etc. My dermatologist did recommend Niacin flush free which to then find out via blood work and then in my Organic Acid Test how deprived my body was of B vitamins (even though I was taking some but my gut wasn’t absorbing half or most of the things I consume.) The test then showed a million other reasons of what was wrong with me, sibo, candida, high dopamine levels, and a slew of other issues. Which all at least validated why I felt like junk and my doctor(s) and NP are helping navigate how to make me feel better a little each day.

I think that working with a rheumatologist is key, although I’m indebted to the neurologist for suggesting Sjogren’s. Now, I’m hoping I am on the right track. And, hopefully this path will bring you answers as well!

The rheumatologist said I was definitely given “bad genes.” What I’ve read is that a lot of what influences what diseases we get are our genes.

These then have “triggers” which may set the “bad genes” into action. In my case, both PBC and Sjogren’s can be triggered by infections, including things like giardiasis. Unfortunately, I contracted this three times and had the first episode, 15 years ago, for nearly a year as my physician didn’t correctly diagnosis it.

I think there does seem to be a correlation with things that make our symptoms worse, like the sun and eating high levels of carbohydrates. It’s definitely a challenge to figure out what affects us individually and what works to treat us and our symptoms. Right now I’m sticking with eating well and walking 2 or so miles a day. And of course researching and waiting for my next doctors appointment!