So the big picture is I have an autoimmune disease that attacks the joints of my spine and the place on my vertabrae where the tendons attach (entheses). This autoimmune disease is called ankylosing spondylitis and the inflammation at the tendon site is called enthesitis. This also attacks the joints of my rib cage making it hard and painful to breathe.
The AS went unchecked for 4 yrs due to misdiagnosis and in that time destroyed the joints connecting my spine to my pelvis. Because of this the pain in that area was/is intense. The final attempt to alleviate this excruciating pain was to scrape out the joint, insert a bone graft and bolt the joint together (2 separate spine surgeries with 6+ month recovery each). This didn't exactly go as planned as the bone graft broke in one of the joints. We are waiting to figure out what to do about that.
*The AS and enthesitis are what causes the "broken glass in between all of my vertabrae" pain. As well as the "labor" pain in my lower back.
I also have fibromyalgia. This used to be very mild, but since developing AS and having the surgeries it has become quite severe (it is triggered by physical trauma). One of my Drs is still searching for other causes of some of my symptoms just to make sure the fibro is what is causing them.
*This is what causes the all over pain. It feels like Charlie horses all over your body on really bad days. Every single (my "normal") day it feels like I am getting the flu and walking through 3 feet of molasses. It's awful and exhausting. My diet helps this a lot but many things out of my control trigger flare ups (the weather, poor sleep, not resting when I should, etc). Sometimes it hurts to have clothes touch my skin or my pillow touch my face like I have a bad sunburn. As you can imagine this is exhausting.
Now, what happened neurologically?
In Oct/ Nov I had a "neurological attack" that the neurologists and rheumatologists were confident was MS. It was awful- numb feet, trouble walking, unable to function because my brain and body basically just shut down. Bugs on skin itching that caused massive bruising. I was a zombie and barely functional. My kids went to daycare and with friends and friends nannies for several weeks because I couldn't drive or even get out of bed. It was horrific and I am terrified of it happening again since it came on quite suddenly.
This they have determined (for now) was a rare, severe neurological reaction to the medication (immunosuppressants) that I was on for the AS. Needless to stay we stopped that medication so currently I have nothing treating the AS which, yes, means more pain.
The MRI that I had was for lumps found in my lymph nodes. There was a concern of lymphoma because of my history of cancer and the medications. Thank God the mri came back as benign lumps, signed off on by oncology and interventional radiology. That was not a fun few weeks.
So we're back to trying to figure out the debilitating fatigue and intense leg pain. I have good days but every day my body just gives up in the afternoon/ evening and just wont function any more. Technically these two symptoms can be caused by the two conditions I already have but since these are new symptoms they want to investigate further. Sooooo I just got home from more blood tests and with a diagnostic medication (a medication that you take and if it worls- you have the condition, if it doesn't work then you don't). We'll see what happens!
That's where it all stands now. Those are not including the severe anemia, complete lack of a thyroid necessitating constant monitoring and medication, autoimmune dry eye (restasis is fabulous!), Chronic gastritis/ulcers preventing me from taking ibuprofen! 😢, vitiligo, Osteopenia and more little annoying things that really don't matter. All of these conditions are being managed and don't prevent me from doing anything or living a normal life so we see them as seriously no big deal.
So you can see how it is all a balancing act. When I have JUST AS pain it's bad but easier to push through and manage mostly as long as I can do what I need to do (Medication, lying down, heating pad, ice pack, sometimes sitting). Fibro is a little harder because it feels like my limbs all weigh 100lbs each. It gets tiring very quickly and some things are worth pushing through the pain for and some things aren't. Nothing much helps this except lying down in bed. My brain gets tired too. Yesterday for example I was playing dinosaurs with my son and eventually my arms couldn't even hold up a toy dinosaur anymore and all I could do was smile.
*Once again these symptoms are still being investigated.
So that's the story. Not complaining just explaining so it doesn't seem so mysterious when I have a bad day or when I accomplish something that seems small but to me and my family may be huge.
