Last Thursday, I found out I have a tumor in my left knee. If I’m honest, I’m pretty upset still that my rheumatologist didn’t tell me. That’s not something that anyone should find out from x-ray notes.
The whole reason I had gone digging was to find out why a referral hadn’t gone through. It was listed on my visit details that day, but I never got a call. After six weeks of waiting, I managed to corral my doc into putting the referral in correctly. I’ve learned I have to do that with her lately, and it’s frustrating.
Luckily, with freezpocalypse upon my state, I was able to miraculously get in to the pain management physiatrist to evaluate my knee pain. Turns out, I’ve got a few new diagnoses to add to the list.
Again.
Generalized Hypermobility Spectrum Disorder
Basically, this means I’m stretchy, but not quite into Ehlers-Danlos Syndrome (EDS) territory. You can check out the handout my doc gave me here.
I’m going through PT again. This time, though, I’m working with a hypermobile aware therapist. I think it’ll make all the difference – even though I love my old PT, too. She also runs a tai chi class specifically for hypermobile patients that I’ll be joining.
I’m adding new items to my repertoire, too, to help stabilize joints.
Iliotibial band syndrome of both sides
This causes knee pain with certain movements. That pain is generally located on the side of the knee whereas something like patellofemoral arthralgia – which I also have – causes pain in the kneecap.
A lot of the issues this causes will be addressed in PT. Some custom orthotic shoe inserts will help, too.
Suspected Postural Orthostatic Tachycardia Syndrome (POTS)
One of the things that often goes along with Mast Cell Activation Syndrome (MCAS) and being stretchy is POTS. It’s a circulatory disorder that presents symptoms when someone changes positions. Standing up from any position can bring it on especially hard.
Compression stockings are supposed to help a lot with this, so I’m on the lookout. There’s a lot that I have to buy now. If you want to help, here’s my Amazon list.
I’m glad that these things that I suspected were taken seriously finally. It’s wild to me that I actually know what I’m talking about with my body. It shouldn’t be, but that’s probably how it is for a lot of us.
On top of it all, I’m muggle sick right now. I swear, I sound like Bobby Brady as his voice changes… but maybe that’s because I’m just thinking about the many upcoming changes I have to start making.