Where to Begin?

Since about 2013, I have had a multitude of symptoms that seem to be getting worse as time goes by. In the summer of 2014, I had a huge reaction to cold exposure that started on my hands (I was holding a cold drink) and eventually caused me to have an anaphylactic reaction. I have always had lots of allergies, but this was new. At the time, I was treated at a local ED (this happened while I was out of town for my sister's wedding) and then told to follow up with my GP. My GP ran a ton of blood work and sent me to an allergist, who then sent me on to a rheumatologist. The rheumatologist did a bunch more blood work. Everything came back within normal limits, except my ESR on a few occasions.

Fast forward to now... I have joint pain (feet, ankles, knees, hips, shoulders, wrists, hands) that is almost always there and intermittently intensifies to the point that I feel like I can't walk some days. I seem to have flairs of GI issues. I will be fine for awhile and then out of nowhere, I can barely make it to the bathroom after eating and have lots of abdominal pain. This usually lasts for a few days and then I will return to normal. I have never found a common thing that sets my GI system off. I'm tired all the time, but I have just attributed this to being a student, working, and having 3 young kids with autism. I am done with the intense part of my schooling and feel like I can still never get enough rest. Within the past year, I have developed some neuropathy type pain in my feet. They will sometimes get numb and tingly, usually on the bottom surface of my foot. Sometimes it happens when I'm sitting, sometimes standing.

I have continued to have issues with my feet and hands. When exposed to cold, they become red and blotchy and start burning and tingling/itching. When exposed to heat they become very puffy. When I get cold, I struggle to warm up. I have low grade temps on a pretty regular basis (99-100). I struggle with photosensitivity - as soon as spring comes, I will be covered in a hive like rash anywhere that is exposed to the sun. The rash is the worst on my chest. This has been happening for the past 2, maybe 3 summers. I have weird dry patches on my scalp. I have had on and off hair loss in my hairline. It seems to thin, then start to grow back leaving me with lots of short, fine hair in front, and then eventually falls out again. I used to have really pale, porcelain skin, however over the past few years it has become more and more red. I'm trying not to worry too much, but I am wondering if it is a malar rash. It spreads over my nose and across my checks.

My question is, where do I begin? Is this worth looking into again? Do I go back to a GP? (I actually don't have one right now, mine recently retired) Do I try to make an appointment with rheumatology without seeing my GP? Is there another option I am missing? Also, does this look like a malar rash?

Hi, Lynwood - Thank you for sharing the resources! I last saw a rheumatologist in 2014. Their original thought was that I could have mastocytosis, but that came back negative. Then they proceeded to do a bunch of blood work to test for auto immune conditions. The only thing that came back out of range was my ESR, which was slightly elevated. Of the tests mentioned in the article regarding inflammation, they tested my fasting glucose, RBW, and serum ferritin. All of those markers were within range, however, the ferritin was in range after taking iron supplements for a while because it had been very low previously. The rheumatologist basically dismissed me and said if things get worse some day, we can try again. I'm starting to feel like that some day is here.

My face actually has been looking pretty good lately. I live in the upper midwest of the US, so we have been experiencing winter for nearly 5 month. Based on last summer, I'm guessing it will get worse again when there is more sunlight. I took another picture this evening to have when I go to see a GP. My face was much more red and inflamed after only a few hours of helping with a home improvement project. I did not feel hot or flushed, so it wasn't like it was from working up a sweat. It's hard for me to tell where my rash falls since there are so many different examples of what a butterfly rash could look like out there.