Sjogren’s is manifesting neurologically for me. Working along with my Chiari Malformation (hind brain herniation), I struggle with peripheral neuropathy, degenerative disc disease, and Tarlov cysts. If you suspect this is happening to you, the info in this article may help.
I was told by the neurosurgeon this week that I need spinal surgery for my scoliosis. It’s progressed in the past 6 years and he’s recommended I have T2-L5 done at a hospital 8 hours away from home. I’ve been in pain management for the last 4 years and tried many solutions to living with the curves and daily pain. I’m told it’ll be harder to recover the longer I wait, but I’m scared to move forward. #MarfanSyndrome #Scoliosis #ChronicPain #Migraines #duralectasia #ChiariMalformation
Even those I hate labelling it's great to know that I've not just been feeling rather crappy and in pain just because!!
I recently got a port for fluids and ect but the dressing that the home helth says is absolutely the best doesn't stay on well so I've been using the tape they gave me to keep it on and they also think is the best. I'm reacting to the tape and when I take it off I'm sticky everywhere and I can't get it off without lot's of scrubbing... to the point of bleeding. it doesn't matter what I use. And that could really raise infection risk so I'm looking for suggestions for tape, getting tape residue off, skin protectant or a dressing that you have found works well. Thanks!
#EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #Port #tetheredchord #ChiariMalformation
Since I’m the only member and I’m newly diagnosed, I thought I would share my first flare up symptoms. As far as I know, I’ve never had anything like this before. I was diagnosed in March but found out in August. I have my first appointment with a rheumatologist in two weeks. I don’t think I have ever exhibited symptoms until the last few days. At first I thought it was an ear infection. Then everything else began to flare up today. I have tendinitis in my right elbow, but my left elbow is mimicking the pain. I have Chiari malformation which causes headaches and neck pain and that seems to be flared up because of the ear pain due to swollen salivary glands. Sometimes they go off like I just ate something sour like a lemon Warhead. I feel like I have a fever but my temp is normal. Actually it’s a little high at 98.1 and I’m usually 97.6. The whole left side of my face hurts. My left eye feels a tiny bit droopy but looks fine. I’m very tired.
I can’t help but wonder if the Moderna vaccine triggered the Sjogren’s because there is evidence of that happening to other people. The vaccine kicks my ass every time with at least three days of recovery. I’ve had three shots now. My heart rate keeps dipping below 60 today and won’t get above 67 even when I’m up and active. I really hope this disease doesn’t get worse because this is about all I can handle.