newly-diagnosed — night pain

    • buckthorn
      October 13, 2019 at 6:06 am

      Hello, I am newly-diagnosed with GBS. Sudden onset was eight days ago. The doctors attributed it the flu vaccine I received (together with the shingles vaccine) 10 days prior to onset. I did five treatments of VIG, and am just starting an acute rehab program. Taking all factors into account — overall health and fitness, active lifestyle, strength, attitude, etc. — the doctors and therapists are giving me a good chance of full recovery.

      Aside from the weakness, especially in my legs, the most bothersome thing I’m experiencing is a searing aching — not sharp– pain going down from my buttocks to my calves, mostly in the back of my legs. And it happens *only* at night, which is really strange and puzzling. It starts at about 10 or 11pm every night, and goes away at about 7am. Needless to say, I haven’t slept well all week. Gabapentin does nothing, but last night the doctors tried baclofen, and it seems to work. They’ve been very conservative with the dosage so far, and I (lying in the bed in the middle of the night as I type this) am going to talk with them about increasing the dosage so it lasts the entire night.

      Have others experienced this particular type of pain? What have you done about it? Has it gone away with time, and how long did that take?

      Thanks!

    • Jim-LA
      October 13, 2019 at 5:07 pm

      Your nerve pain is fairly common. Here are some discussion threads that could provide you with a better understanding of what you are experiencing and some possible treatment options:

      Pain and weakness together

      Does anyone have any name of a drug to help me whit the "Electrical currents" fe

      Pain in Legs/Feet While Sleeping – Anyone Else?

    • buckthorn
      October 13, 2019 at 9:36 pm

      Thanks @Jim-LA. I have no doubt that the nerves are a deep cause, since nerve damage is what GBS is all about. But treatments that focus on nerve-based pain, such as gabapentin, have no effect. The only thing that seems to help is Baclofen, which is not mentioned in many recent threads. Maybe more people get nerve pain than the leg muscle “freak-out fest” (my term) that I am experiencing. Apparently it’s not easy to figure out the best dosage for Baclofen, since everyone is different. It has a half-life of about 5 and a half hours, which matches my experience exactly. Baclofen also has the added advantage (for me) of causing drowsiness, although that could be a potential problem if you take it too late in the morning and have a demanding morning therapy schedule. I had a sit-down with my rehab doctor today, and we agreed on increasing the initial dosage and two optional supplementary doses overnight. I am also considering moving from the bed to a lounger to see whether that helps.

      Apologies for being a bit long-winded. Thanks for your suggestions and for listening.

    • buckthorn
      October 20, 2019 at 8:21 pm

      Update: the doctors added Flexeril (cyclobenzaprine), as well as a sleep aid (trazodone) to my bedtime meds and it seems to have worked. I have slept 6-7 hours each of the last three nights without waking up in the middle of the night with pain. When I do wake up, there’s usually some pain. The doctors have changed my dose of baclofen to three scheduled doses spread through the day. The early morning dose of baclofen helps to head off some of the pain. So I do have some discomfort when I get up in the morning, but usually with time and a little physical activity, the pain completely subsides within an hour or so. And, most importantly, I get a good night’s sleep.