Spoonies Don’t Always Know We’re Sick

I figured I’d give an update since I had two doctor’s appointments earlier this week and I went in again today last minute.

Officially I’ve been diagnosed with Fibromyalgia AND Rheumatoid Arthritis. They’re checking my ANA every couple of months because Lupus does run in my family just in case.

I would first like to say I LOVE MY DOCTORS. I called this morning around nine and they had me on the schedule at ten thirty. I had to have my dad drive me but just the fact they got me in so quickly is just amazing to me. Also a big thank you to my dad. I don’t know where I’d be without him driving me places because my hands hurt, making me tea and threatening to take me to the hospital if I don’t call my doctor.

For about a month I’ve been having dizzy spells accompanied by nausea and severe headaches. At first I thought it was a side effect so I brought it up to the rheumatologist on Tuesday but she said because I take most of my pills at night that they shouldn’t make me dizzy during the day. I had to go home from work yesterday because I thought I was going to pass out; I was in a lot of pain but I was dizzy, my ears were ringing and my head was pounding. Woke up this morning (or rather got up–because what spoonie actually sleeps all through the night?) and no change what so ever. In fact, I was worse. Tossed my breakfast, ran into the wall and couldn’t even stand for more than a few minutes. I’m hard headed; like to deal with things on my own if at all possible but this was so abnormal for me.

Needless to day, despite how ridiculous I felt for going in complaining of a headache and what not my doctor was very concerned about my blood pressure. My body temp stays at 96-97 and I do have low blood pressure but not low enough to be concerned about. Today however, I had a temp of 99.1 and lower than normal blood pressure even for me–also possibly dehydrated as well. I’m lucky I talked her out of admitting me right then and there. Once her initial examination was complete, she found some fluid in my ears and a white spot on my throat with some evidence of drainage.

Final verdict was (on top of having Fibro and RA symptoms today) was Strep, vertigo and low blood pressure. All of which would cause nausea, dizziness and headaches. So I’m not a crazy hypochondriac. WHOOP. I got two shots, a round of antibiotics and a lecture about not drinking enough fluids then she sent me on my merry way after she made my dad promise to watch me. Currently I’m in bed and that’s where I shall remain until tomorrow.

Being a spoonie is not fun. Its frightening actually. I’ve never had symptoms like this, ever, so you can imagine why I was so freaked out about feeling so dizzy. But to have a team of doctors that listens, understands and looks for underlying causes of even the simplest symptoms is great. One of my doctors (the one I saw today) actually has fibro as well. She said something to me that made me want to hug her. “I’ve found that people like us–with an autoimmune or pain disorder–often don’t even know we’re sick because we feel bad all the time. Sometimes we don’t even present certain symptoms, so I know exactly how you feel.”

I can’t tell you how true that is. Since beginning my diagnosis journey, I’ve had a lung infection, pneumonia, laryngitis and now strep. I never once ran a fever with the lung infection or the walking pneumonia and my cough wasn’t even that bad. My oxygen count was a bit low but not enough to be worried about.  When I got laryngitis over New Years my throat didn’t hurt–I just couldn’t talk. Same thing with this strep. My throat doesn’t hurt, I’m not congested or anything. I don’t even know how I caught it. I haven’t jumped on the mask band wagon yet.. but I’m about to because I don’t know if I can handle another lung infection and the flu is going around as well.

But just because we don’t have all the symptoms doesn’t mean we’re not sick. If you feel at all ill or off or like you may have something it is okay to go to the doctor. They’re there for a reason. This was a hard lesson to learn but just knowing that my doctors would never laugh at me for coming in with trivial symptoms is very comforting. No one expects you to power through even a cold–especially spoonies. But it’s hard to know when you’re actually sick when you feel bad all the time. I thought the dizzy spells were a side effect of a medication I’m taking–turns out it’s not.

A headache is sometimes just a headache, but sometimes it’s not. It’s very important to know you’re body, limits and triggers so that when odd symptoms do arise you’ll know how to deal with them. I know so many of you personally and a whole lot more only through social media–we all try to be strong way to much. We all try to deal with things on our own, especially something simple. Take care of yourselves, my loves. I know sometimes it’s hard, but it is important.

With love,



P.S. I ordered my first Spoonie Essentials Box today!! I will do a reveal when it comes in and talk a little about the project. But here’s a link to their site.


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