What do you take for pain?
I have had gMG since I was 15. I’m now 46. I had a thymectomy at 15 and was in remission for sometime. I’m struggling with the pain I am feeling. Tylenol doesn’t help and I can’t take ibuprofen due to being on a blood thinner from a pulmonary embolism after my first IVIG. I am waiting to start a new infusion but am extremely frustrated and exhausted. I’m taking a ton of pills a day and nothing has changed. I wish people could understand what it’s like to deal with this daily.
Thank you for your responses. Mine is mainly neck pain (or just the heaviness of trying to keep it up all day). I am doing so much better now. I started Ultomiris two weeks ago and had my second loading dose Friday. I am seeing small improvements. I do feel like my pain is all over at times, but that might just be the fatigue from the MG. It's so hard to distinguish at times. I am now off the blood thinner and am able to take aleve and that has been helping. I just miss the life I had prior to it coming out of remission.
I relate very much to the neck pain. It is fantastic to hear it is better for you now!! I highly suggest a massage gun for when you do experience pain. -Jodi, Team Member
Hey Liz! I am so sorry to hear you are experiencing this. Sending my uttermost compassion your way. Where is the pain? Or what does it feel like? A specific area, chills sensation, joint pain, muscle aching and soreness, or straight-up painful?
-Jodi, Team Member
we hear you. Our community understands💕. How have you been managing recently? Have you started your new infusion? Keeping you in our thoughts. -Julie (team member)
