Feeling Overwhelmed
I have been diagnosed for 2 years now. On prednsione, mestonin and cellcept. gabapentin and nortriptyline, IVIG monthly. Leg fatigue during the day, restless legs at night. SO much fatigue.I go to bed at 6:30 pm, struggle to sleep all night... up with back and leg pain. Often sleep in the tub, I feel like giving up.
Sometimes overwhelmed seems like an understatement. I was diagnosed a year ago, I'm taking prednisone, mestinon, aziathoprine. It has been tough the prednisone turned me into an image that I don't recognise. Don't get me started with the leg fatigue, lately the swelling and pain that I feel in my legs and feet just unbearable. We've had our lives turned upside down, we're still learning the tools of how to live with this illness and it's not easy. I hope you have all the support you need, give yourself some grace and take each day as it comes. Love and light
Dear MG patient, I was diagnosed with gMG in Jan 2023 but my symptoms started them on March 2022, my PCP didn't get it. I'm almost in all the meds you're taking, lately I'm on IVIG since 6 months, but this my third treatment that I've been, I low my dose on nortriptoline by 1/2 because my brain fog & fatigue was some intense, and that gave back normality in a sense. IVIG doesn't give me the strength that previous treatments gave me. The first was Vygard that lasted for little more than year and a half. I gave me back 70 % of my strength but stopped working. The second was Plasmapheresis which was fantastic, gave back 85% of my strength, but the especial Plasmapheresis center which operates for many years closed I went to another infusion center for my Plasmapheresis treatment buy the nurses didn't have enough experience & my veins are small. They were no able to perform a full treatment. I wish you the best, but you're in charge. Look for others treatment and research the interactions that your meds have with IVIG. That helped me a lot reducing prednisone and nortriptoline
O, I h8 to hear of anyone suffering in our community! I see myself in your story & take many of the same things you do except the steroids & cellcept & i take lyrica for nerve pain & lamotrigine & buproprion for my mood/depression...
Do you take a statin? I did & now am only taking Ezetimibe for cholesterol...that change has helped my strength a little & my cholesterol has been ok, so far...
Of course we are all different in how we respond to medication but it maybe worth evaluating all your meds w/ your physicians to see if anything else could be tweaked to help you feel better...
Hang in there & I will 🙏 pray for U
MichelleDrink lots of water
