Okay so I saw the Pain Management Clinic today.
First of all, one doctor talked to me for a while and though the neuro said he “diagnosed” me, this doctor was like “No, there’s obviously something wrong here. He labeled you with the ‘I don’t know’ diagnosis because of your wide range of symptoms. Which is also what Fibromyalgia is. It’s probably multiple pain diseases we’re yet to understand, so we call them Fibro. Or, sometimes, Central Pain Syndrome, like your doctor did.”
But he (and the second doctor who evaluated me, I had two today) both are of the opinion I have something, and I need to keep looking for it. They’re curious as to what the Rhuematologist will say, and what the Autonomic testing will yield. They think it’s a high possibility I do have POTS and it’s likely I have some kind of autonomic (involuntary) nerve or muscle disorder riding along with it. Which, this isn’t the first time this has been said to me. But my testing isn’t until February so uh yeah
In the meantime, I’m in a shit ton of pain. Daily. So. They are inducting me into something called an Interdisciplinary Pain Management Program. Next Thursday, I’m going back and they’re going to do a series of evaluations and tests with me, a pain management physician (looks like I have two), a nurse, a psychiatrist, a psychological counselor, and a physical therapist that’ll take about two and a half hours, then I leave, and from there they do a round table discussion about me to decide which EXACT program I need to do, set it up, then I’ll be going to this med school every week, twice or more a week. For a while. They said we won’t know how long until we get going, it depends on how well my body reacts to things, and really whatever disease I have.
But it’ll consist of physical therapy, medication, procedures, pain counseling, and anything else I might need. They said depending, they may call in doctors from other specialties to help out. And I’m really willing to try what the fuck ever if it helps. Cause it’s getting worse, and I can’t do anything about it on my own.
Both doctors though kept saying “KEEP GOING TO YOUR APPOINTMENTS, THIS IS NOT A CURE, THIS IS JUST TO IMPROVE YOUR QUALITY OF LIFE.” And they also told me, they’re going to try and look for an answer while I’m doing this. But for me not to EXPECT one. Which, I think makes sense. Maybe someone will actually look at my legs, that’d be amazing.
It’s quite a place. And they seem like they really want to help me. So. Yeah. Should be interesting.
It’s midnight and I’ve done NOTHING today
except throw up but that doesn’t really count
I need to watch two more episodes of Arrow so I can watch Grant be Barry Allen tomorrow but I can’t focus on anything whyyyy
THE MOLE ON MY LEG WASN’T MELANOMA
We were really concerned about this one. All around. The doctor was saying it looked concerning, I’d noticed it’d been changing over time (which was why I pointed it out), it was BIG (I think 8mm is what she said) and there was some pigmentation left behind when she removed it. And it was on my leg that hurts the worst. Then it was even labeled on the patient portal as a ‘possible malignant tumor’ So it was just kind of like. Uhhhh?
But, nope. It’s not. It’s normal. It had a high chance of developing into something, so she’s glad we removed it when we did. Seeing as the last TWO TIMES I went, she found Melanoma, I’m really glad to have broken the damn streak
Also, all the bloodwork my Neurologist came back too and it’s all normal EXCEPT for the tests that are never normal (The CRP and SED rate are high but no one knows what the fuck that means)
I’m going to the Pain Clinic at the med school on Thursday, and the Rheumatologist on Friday.
Okay. Neurologist at the Med School
I’m not sure if this is good or if he’s talking out of his ass. He’s one of those doctors who is very very sure of himself. He also told me he doesn’t believe in Fibromyalgia. However. He then turns around and says he thinks I have Central Pain Syndrome which to me, sounds EXACTLY like Fibromyalgia (he was asking about all over body aches, brain fogs, tremors, weaknesses so on and so forth) but whatever. I don’t care what he calls it, long as it’s treated properly.
He’s referring me to a Pain Clinic at the med school. We’ll see how that goes. Though, I explained my leg pain to him and he seemed baffled by it, just like EVERY OTHER DOCTOR is. He did understand that it’s constant and has flare ups, and he said that chronic pain commonly flares for women on their period so there’s probably no actual connection other than my body is just upset.
He also thinks I have POTS. Postural Orthostatic Tachycardia Syndrome. There is a test for this and he’s having me do it, hoping soon, I’m not sure. I’m also doing some sort of autonomic text, and he may end up having me do a memory test cause I was telling him how my short term memory is really messed up.
Also, he says I have an Abnormal Movement Disorder. Aka any number of things could be causing this, from a disease to medication, I have involuntary movements in my muscles which he was able to witness while I was in there. He wants my EMG evaluated, but it was done a year ago, it’s a possibility I’ll have to do it again, cause I may have some neuropathy going on. I hope I don’t have to do it again that test was so unpleasant (where they stick needles in you and shock you? No thanks. Did it once, not again)
And he wants me to do another sleep study. But he said the one my other neuro did is useless cause it was an in home study. He even mentioned having to resort to surgery in my case because my airway looks like it’s closing up and aaaaaaaaah :| Let’s not.
He doesn’t know wtf to make of my skin. I showed him the marks all over my legs, and told him how it’s showing up on other parts of my body but only places I have pain, and he was just looking at me like. The hell is that. Thing is, my dermatologist doesn’t know either. Neither of them.
He ALSO took a ton of blood so. He’s not just giving me the CPS and POTS diagnosis and calling it a day. He’s not happy with the old bloodwork I have, with my CRP and SED rate being insane for over two years now, for no apparent reason. I’m still seeing the Rheumatologist on December 6th.
I just wish someone would actually look at my legs. All this pain is there. X-Ray them. MRI them. The PET scan didn’t even include my legs. Why not. Why is everyone ignoring them when I am complaining so much. It’s like me going on and on about my neck, and turns out I have extra ribs there and now I’m being told my airway is half the size it should be. IT’S MY BODY. PLEASE LISTEN TO WHAT I AM SAYING.
Woke up in the middle of the night last night and had a bunch of. . All I know how to describe them is boxes in my vision. Little (not perfect) squares, in rows, and I couldn’t see past them. Not the first time it’s happened. But it only happens when I wake up in the middle of the night or something. I have other things in my vision during the day, but nothing that solid.
Going to the Neuro at the med school on Monday, so it’s something to talk about
Also I’m exhausted today. I’m working on a Sims post but I also wanted to clean some, and I was up walking (went downstairs to eat, cause dad brought food) and I just wanted to lay on the floor. Not SLEEPY just, energy levels are zip. Urg
I don’t have chronic pain but this artwork is so nice to look at *^*
Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.
This hits a bit too close to home.
Something I’ve been trying to explain to my parents and they just don’t get it.
My kid was shocked to hear how much I hurt all the time, because yes - you get good at not showing it
This is a great representation of what I live with
HEY I did a video about how hardcore you are and how hardcore you are for doin’ life and bein’ disabled and stuff so watch it because it’s basically a giant pep talk
Everyone who feels hopeless because they’re ill today, watch this.
My pulse is 130 and I was having trouble breathing and got really really nauseated how is everyone else tonight
Not chest pains or anything just my throat got real tight and it felt like I was gasping? It’s better. My pulse is still sky high though