Balance issues, as of 2017 I have been using a cane to walk because for some reason I began stumbling and sometimes even tripping., and dropping things also, things would slip out of my hand. I can't close them nor make a fist.😣 So Grateful for this site, NOW all the things that I've been going through in the last couple of years make sense.💜

I have tried so many pain medications for Lupus migraines. I got so tired of being looped out of my mind. I sucked it up and went and got the migraine Botox. I haven’t had a Lupus migraine since. The needle pricks weren’t fun bit I just kept thinking about how much more painful the migraines were and the treatments are every 4 months.

That's our norm! I have been asking people for years--"does this room look smokey?" Stumbling--I thought I was clumsy! You will find YOUR norm--me, I just hold on to the walls and stumble on! lol Welcome Warrior!

Hi there,

Sorry you are suffering so much. Head pain is the worst in my opinion!! I suffer from Occipital Neuralgia and Chronic Migraines as a result of lesions on my spinal cord due to lupus and the pain of them have pretty much ruined my quality of life, so I fully appreciate and empathise deeply with the pain and difficulty you are going through. I really hope your Neuro surgeon is able to provide you some relief. I have tried all the medications and now get nerve block injections but they offer only temporary relief from the occipital neuralgia, not chronic migraines. I hope my neurologist has something up his sleeve! 🤞

I really hope your appointment goes well for you. If you don't have biofreeze for your neck and ice caps for pain to keep in the freezer for when needed, I strongly recommend them! Small comforts but they help a bit. Take care and sending a hug x

I get bad headaches, also have peripheral neuropathy in lower legs and feet