During the last two weeks the tingling, tight sensation in my arms has now crept up beyond my elbows and my feet feel like they are full of marbles. Yikes, I so want to be better yet this is worse in spite of having more overall strength. Thanks for listening
In the last week, I have had a progressive tingling sensation below my left knee that has crept down my calf. About a month ago it was on the left side of my left calf and knee but now is on the right side of that same leg. I'm not sure myself about it but I have more overall strength, as well. I'm 4 months since my first symptoms of GBS. I hope someone has insight on this.
Sounds similar to what I am experiencing and I sure hope there are some answers and helpful remedy ideas out there too. Thanks for your reply. Did you have IVIG transfusions? I wonder if that would help now?
Tarhealing said:
In the last week, I have had a progressive tingling sensation below my left knee that has crept down my calf. About a month ago it was on the left side of my left calf and knee but now is on the right side of that same leg. I’m not sure myself about it but I have more overall strength, as well. I’m 4 months since my first symptoms of GBS. I hope someone has insight on this.
They never gave me IVIG transfusions. I am in an area where doctors are puzzled by this whole thing. They kept saying why do you think you have a "zebra?" We look for "horses." I kept wanting treatment but they did not want to obscure my symptoms. I made it through the toughest times. I'm glad I found the other zebras! lol
Hi Gayleen: I am six months into the GBS & the last 3 weeks the burning in my arms & legs has gotten twice as bad as it was. I am also more fatigued than I have previously been. I try to either walk or do some weight training each day, but the past 3 weeks I am doing much less. I am taking 2400mgs of gabapentin a day with no relief. I have tried nortriptylene, Cymbalta, lyrica, vicodin, oxycodone, nucynta & dilaudid & none of them gave any relief. The neurologist says the pain is caused by the nerves healing but will not touch the question of when the burning and fatigue will end. When the burning gets worse after 2:00PM each day, it goes above my elbows up to my shoulders like you. Have you found any relief with drugs? You are also around 5 months into the GBS?
Thank you Larry, we are dealing with the same pain for sure along with the weakness. I just want it to be better! The only thing that keeps me going is the continued hope that " this too shall pass" ! Let’s hope it heals soon. I am taking Gabapenten too, 2 pills in the morning, two at bedtime along with two tylenol arthritis, I so wanted to be done with meds by now and they do very little for the burning/numbness but do help me sleep at night. I’m trying to stay positive but it’s not easy. Your reply helps, knowing that it is normal to still have these tiresome symptoms after 5 months. You take care. If I find something that helps I will let you know ASAP.
Thank you
larry g said:
Hi Gayleen: I am six months into the GBS & the last 3 weeks the burning in my arms & legs has gotten twice as bad as it was. I am also more fatigued than I have previously been. I try to either walk or do some weight training each day, but the past 3 weeks I am doing much less. I am taking 2400mgs of gabapentin a day with no relief. I have tried nortriptylene, Cymbalta, lyrica, vicodin, oxycodone, nucynta & dilaudid & none of them gave any relief. The neurologist says the pain is caused by the nerves healing but will not touch the question of when the burning and fatigue will end. When the burning gets worse after 2:00PM each day, it goes above my elbows up to my shoulders like you. Have you found any relief with drugs? You are also around 5 months into the GBS?
Hi Gayleen & Larry G! I get burning in my lower back and sometimes my shoulders at about 3 or 4 pm after standing all day at work. I sometimes get numbness in my legs when it is bad and the muscles in my neck tighten. The neurologist said that I am having nerve regeneration and scheduled me for PT. They have been doing dural stretches at PT because they say that my back is tightening to compensate for the weakness in my core from nerve damage. After several weeks of PT, it's amazing that after this dural stretch my pain disappears right then. It does comes back a little after I do activity but they have taught me how to stretch my back and neck at home too (although it's not quite as good as when they do it.) This has really helped me over the weeks and the burning is getting less and less along with the pain-(had my first pain free days this past week in a long time). They said that I need to change my body's reaction to fatigue so that it responds by getting tired instead of tightening up and burning or hurting - it is important to break the pain cycle before the body gets used to responding this way. They said that you can still affect the pain cycle later but it is more difficult when your body gets into this pattern. I have had to modify my workouts so that I do less aggressive activities until my core is stronger (pool walking, recumbent stationary bike, very light weights, walking). I am fortunate that my physical therapist is experienced with GBS patients.
Thank you so much! Very helpful information to check out with the PT, so glad there is something we can do! Yes!
Tarhealing said:
Hi Gayleen & Larry G! I get burning in my lower back and sometimes my shoulders at about 3 or 4 pm after standing all day at work. I sometimes get numbness in my legs when it is bad and the muscles in my neck tighten. The neurologist said that I am having nerve regeneration and scheduled me for PT. They have been doing dural stretches at PT because they say that my back is tightening to compensate for the weakness in my core from nerve damage. After several weeks of PT, it’s amazing that after this dural stretch my pain disappears right then. It does comes back a little after I do activity but they have taught me how to stretch my back and neck at home too (although it’s not quite as good as when they do it.) This has really helped me over the weeks and the burning is getting less and less along with the pain-(had my first pain free days this past week in a long time). They said that I need to change my body’s reaction to fatigue so that it responds by getting tired instead of tightening up and burning or hurting - it is important to break the pain cycle before the body gets used to responding this way. They said that you can still affect the pain cycle later but it is more difficult when your body gets into this pattern. I have had to modify my workouts so that I do less aggressive activities until my core is stronger (pool walking, recumbent stationary bike, very light weights, walking). I am fortunate that my physical therapist is experienced with GBS patients.