My symptomatic journey

About 8 years ago, I began a journey that has led to the start of this blog. I love to write, but that’s not the only reason I’m here. Over the last year, I have seen a lot of doctors trying to figure out what’s wrong with me. I’ve scoured the internet researching and looking for others with similar symptoms. I found that people share their stories, but they don’t always detail their symptoms. So that’s what I’m doing here. This is long – and probably boring for most. But if you are searching for answers to an ongoing nightmare of multiple symptoms and can relate to what I have been going thru, I want to encourage you that there is hope!

One summer, I was very sick and had severe back pain. The next 2 years were filled with more pain and absolutely debilitating fatigue. I recently read someone describe debilitating fatigue not as sleepy, but as if something is weighing down every inch of your body to where you just need to lay down. Yep – that’s it!

After multiple doctors and tons of tests, it was finally determined I had degenerative disc disease (back pain) and fibromyalgia (other pain and fatigue). They tried me on every drug under the sun – all of which had ridiculous side effects. Eventually, I started my own research and found a mix of supplements that gave me enough energy to feel like I had a bit of my life back. I also began magnetic therapy, which eased the back pain a great deal.

Over time, the supplements began to give me side effects as well, so I eventually weened off most of them. Life was feeling pretty good – I still had days I needed to rest, but for the most part, I was functioning fairly well.

Until…

2013 came along with a bang. Early in the year I came down with strep throat. Urgent Care prescribed penicillin. 3 days later, I was in the ER with severe neck pain and stiffness they attributed to the penicillin. Since then, it’s been one thing after another – severe back and neck pain, unbelievable headaches not relieved by narcotics…I get several types of headaches – the worst is the one that feels like a knife is stabbing me repeatedly at the base of my skull and the pain radiates up over the top of my head. Sometimes it just feels like my brain is being crushed from all sides. And sometimes it’s the front of my face, just one side – and feels like I’ve been hit in the eye with a sledge-hammer.

My hands and feet began to tingle and burn – when I say burn, I mean it feels like someone is holding a blow torch over my skin. Numbness – there were days when my husband would grab my hand and I couldn’t feel it.

My tongue most often feels like it is being dipped in scalding hot coffee. My lips constantly feel tingly – if you’ve ever had Novocaine for dental work, you know the feeling when it’s almost worn off – yep, that’s it. All the time.

I get pain in my face that runs around my eyes and then down the side of my face along my cheek bones and jaw.

Rashes – lots of rashes. I developed vesicular palm eczema on both hands which requires steroid ointment. One rash covered my entire back and itched like crazy for weeks. I had a red, raised rash on the inside of my thighs for months. Two brown blistery rashes showed up on the inside corners of my eyelids for a couple of weeks. My elbows have had a dry-skin type rash for about 6 months. I have a bacterial rash on my back and chest. Then there’s the little patches that pop up and disappear. And petichae – tiny red blood blisters – all over…I’ve gotten those for years but never thought anything of it until my new doctor pointed out that it is very common among a particular infection.

I get is this all over feeling I get that I can only explain like this: have you ever hung upside down for a really long time and all the blood rushes to your head? That’s it – only it covers every inch of my body. When that happens, I have to lay down, completely flat, no pillow – and just lay very still. Eventually it stops…slowly wearing off.

Probably the weirdest thing was the hand print. I woke up one morning with a hand print on my leg. I figure I must have slept with my hand there. That night, it was still there.

And then there’s the brain thing. It’s not that I can’t think, it’s just that the wires get crossed somewhere in my head. Sometimes, I know what I want to say but I just can’t get the words to come out. Other times, it’s like there’s a fog over my brain and I’m sort of lost – I know I’m in a conversation, but I’m sort of lost and can’t figure out how to comprehend the whole thing.

There are so many more little things – like become car sick all the time and increased sensitivity to light and sound. The list goes on and on. I will discuss doctors and how I ended up with my current doctor team in a different post – for now, if you have some of these symptoms – just know, you’re not alone.

In His Grip!

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One thought on “My symptomatic journey

  1. I’m so glad you’re blogging! And it’s good to hear from you even when I can’t see you in person. Gosh, reading this all I could think was that you definitely have babesia and bartonella( co-infections of Lyme)! Holy moley girlfriend. Those rashes are just awful along with everything else. Praying for you all the time, now I know how to pray for you better. Xoxo!!!

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