My symptoms

One of the first questions I get asked is what my symptoms are. Which with my disease is a fun question to answer because they vary, move around, and can change a lot within each week, day, and hour even. Here we go:

1. Fatigue

Over time my fatigue has progressed to levels I didn't know possible. Some days it feels like I have been hit by a semi. Sometimes just sitting up makes me exhausted. It's almost like the way you feel after getting a really bad flu, but all the time and often worse. So at times fatigue/pure exhaustion alone makes me stay in bed all day.

2. Burning feet

For me this started in 2010 during PT school when I started clinical rotations and those oh so pretty shoes with heels became much harder to wear (yes I am just a little bit of a girly girl from time to time). This feels like I stand on fire. It gets progressively worse the longer I am on my feet cumulatively during the week. And it is not plantar fasciitis but has a lot of similarities. 

3. Joint pains

Location of pain and severity moves around a lot. Basically at all times I am having some kind of joint pains but where and how bad varies. I get pain in: neck, elbows, wrists, fingers, back, hips, knees, feet and around ribs/sternum when I wake up. At it's worst, everywhere hurts. Bad. 

4. Neuropathy

I already mentioned burning in my feet. All extremities have tingling and some numbness, worse in my legs than upper extremity. I'll go ahead and add in here circulation issues, coldness to extremities. Raynaud's

5. Headaches

Daily

6. Brain stuff

That's my medical term. Decreased mental capacity, decreased short term memory (if I don't write it down it's not going to happen), trouble speaking English (forgetting words or forming sentences). On that note don't judge me on my inevitable grammar and or spelling mistakes. I swear I have a Doctorate degree.

7. Weakness

Kind of goes in with the fatigue but my weakness seems more than what a normal amount of deconditioning would be for not working out. Let's just say sometimes one flight of stairs takes me a while and by the end of the day my legs buckle under me some with walking.

8. Stomach issues

Food sensitivities, really medication sensitivities too, GI issues. If eat a little bit of the wrong thing it can mean a day spent in bed or the toilet. (Don't act like you have never used it!). For this reason I now strictly abide by my doctor's recommendation to have no gluten, dairy, added sugar or alcohol. It's not easy, but when you get bad enough you will do anything to try and help. Along the way I am learning a lot about "real" food and using it as medicine. I plan to live a really long time. 103, I'm calling it. 

9. Mood swings

So stay on my good side! Just kidding, but if I am being fully honest I have more agitation and some depression/anxiety at times.

10. Insomnia 

I think that is the main stuff of right now. Honestly, some of the symptoms have changed, developed or progressed over time. They continue to vary or new things show up. 

"When I felt my feet slipping, you came with your love and kept me steady. And when I was burdened with worries, you comforted me and made me feel secure." 

Psalms 94:18-19