BearcatBetch

290d

I think I may need to start being honest with my Rheumatologist.

Okay, a little about me. I was diagnosed at 18 months old with JRA. I’ve never experienced life without pain with I personally feel is a good thing because that’s just my life. Long, long LONGGGG story shot I have now so many medical conditions even I’m not sure what are bs or not. At 15 I was diagnosed with fibromyalgia and it made sense but it was like we are just going to throw everything at you and see what works. I still have pain in every spot they touched to determine my diagnosis. I can not even get a hug most of the time that’s how sensitive I am.

I’m supposed to be getting a TMJ joint replacement at Vanderbilt in Nashville but the pandemic has that one on hold. The jaw isn’t as much pain as it is annoying as. I can’t open wide enough to eat a cheeseburger. I digress.

I had a traumatic brain injury in September 2019 and lost my job and career I really loved. So now I stay at home getting better every day.

Sleep has always been a hard thing for me. Ever since I can remember I’m 30 now. I can’t simply go to sleep. My knees ache like crazy and I constantly have to move.

My rheumatologist way back in 2014/15? At Childrens hospital in Cincinnati prescribed me tizandine (zanaflex) is another name. Well hell, one of those 2mg tables knocked me out. Finally i could sleep. However with the RA came the terrible weight gain from prednisone. My biologic wasn’t working any more
I’ve had RA so long I’ve tried them all. All the treatments. So then in 2018 I am in so much pain. My rheumatologist is like okay we are putting you on rituxnmad and by this point I’m taking my tizandine 4mg two pills and I’m out.

Come back alive from a freak out accident I had to fight to be my normal again which to anyone else outside looking in was awful.

Fast forward to today I have uncontrollable muscle movements which make it hard to fall asleep in the first place. Well the two tizandine have become 4 and that is the max my persecution allows.

My weight went from 180 to now I’m 105. Trying to get stronger is not easy.

I don’t know why I’m asking you guys but it’s 4:30am and I just want to sleep.

FYI : I do have my medical marijuana card but it doesn’t help me sleep. It does help with pain though. But I just can’t go to sleep and stay asleep. For example today is one of the worst. I’m at my end.

My rheumatologist scares me bc what if she just takes the tizandine away (I think she will)

Any friendly advice is much appreciated just please be kind is all I ask. I feel like I’m dying and I’m only 30.

Rituximab

Fibromyalgia (FM)

Tizanidine

Chronic Generalized pain

Prednisone

Generalized pain

View all
  • flibberflam

    290d

    that sounds so tough especially lack of sleep—that makes everything so much harder I don’t know if I can suggest anything you haven’t tried, but on the off chance I can, here’s what works for me - always put on something like a movie or music that I know by heart to distract me from the pain but bore me to sleep - I take benadryl or unisom, sometimes in combination with a painkiller - use braces (I looooove my compression gloves for my RA, especially when sleeping) and all kinds of pillows in any combination good luck I hope it gets better soon

  • loveshespoke

    290d

    Sending you BIG LOVE on this one ❤

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