I'm 12 months into recovery and pretty much my story is similar to Tarhealing. The eyes is hard to explain, almost like you get dizzy turning your head too quickly, plus I had to wear my reading glasses 24/7.
I am exercising pretty regularly now, the best advice I can give you is not to set personal best goals. I made that mistake of trying to better my treadmill score - apparently that day was a bad day for me and it really whacked me. The biggest mental block for me in the gym is knowing what my limits were before, and what they are now.
I also find that I get more tired than I used to. I travel with work, and when I get home even if I'm only gone a couple of days, I fall asleep on the weekend in the middle of the day and sleep for hours. Just go slow.
The burning pain and pins and needles will get better, but you're looking at months not weeks.
I actually had to get a pair of reading glasses and had never worn any glasses before. The eye doctor did not understand why I could not see since my optic nerve was fine. I had a hard time explaining it and they never understood. I'm just glad that it got better!
I found being a passenger in a car was the worst, staring out the window at the world zooming by. That used to make me want to pass out. So much of this illness is baffling.
Tarhealing said:
Hi Nojabold,
I actually had to get a pair of reading glasses and had never worn any glasses before. The eye doctor did not understand why I could not see since my optic nerve was fine. I had a hard time explaining it and they never understood. I'm just glad that it got better!
I’m panicking GBY now because I caught a bad cold and I’m coughing so much, I can’t go to the docs office till the morning. I’m deathly afraid of relapsing. Any suggestions?
Nojabold said:
Yep I agree, glad it got better!
I found being a passenger in a car was the worst, staring out the window at the world zooming by. That used to make me want to pass out. So much of this illness is baffling.
Tarhealing said:
Hi Nojabold,
I actually had to get a pair of reading glasses and had never worn any glasses before. The eye doctor did not understand why I could not see since my optic nerve was fine. I had a hard time explaining it and they never understood. I’m just glad that it got better!
Everytime I get sick I get a recurrence of symptoms but they go away when the cold / flu / virus goes away.
Try not to panic - if you're making recovery progress then that's all you can hope for and keep going. Listen to your body and rest if you need to. Just take it easy and wait for the cold to pass.
I never used to get sick, now I get sick a lot and when I get a cold, it floors me for days. But if I don't rest and take it easy, it lasts a lot longer.
I would take vitamins to keep my immune system up and see if the doctor recommends anything more other than rest. Stay positive!
I am freaking out a bit. I have a sinus infection and a bad cold and I’m on antibiotics. I’m feeling super tingly. I’m so afraid of a relaps. How would I know? Will my legs and arms get weak again? Or tingly in new places?
Nojabold said:
Everytime I get sick I get a recurrence of symptoms but they go away when the cold / flu / virus goes away.
Try not to panic - if you’re making recovery progress then that’s all you can hope for and keep going. Listen to your body and rest if you need to. Just take it easy and wait for the cold to pass.
I never used to get sick, now I get sick a lot and when I get a cold, it floors me for days. But if I don’t rest and take it easy, it lasts a lot longer.
I would take vitamins to keep my immune system up and see if the doctor recommends anything more other than rest. Stay positive!
You know how you get aching muscles when you get the flu? Well now for me I get burning and tingling instead of the usual aches. I live in Australia so we've just come out of winter into Spring, trust me I got every cold and flu going this winter!
I was like you, freaking out the first time it happened. All you can do is wait. For me, it all goes away as the flu/cold goes away. The other thing is that the burning pain and tingling is no where near the same intensity level as it was when GBS started.
I take magnesium (muscle support) b12 (nerve support) and vitamin C (immune support). True relapse is very rare with GBS, but like me you are still in the recovery window. I was told that GBS can take 12 months to 2 years or longer. This then makes sense to me that when my immunity gets a hit like with a virus or infection, then the recovery is stopped so that the body can focus on the new threat.
Keep positive and if you feel better once the infection clears, remember that for next time you get sick!
Did you get tingly in other places that you didn’t get it before?
Nojabold said:
Hi Ivy,
You know how you get aching muscles when you get the flu? Well now for me I get burning and tingling instead of the usual aches. I live in Australia so we’ve just come out of winter into Spring, trust me I got every cold and flu going this winter!
I was like you, freaking out the first time it happened. All you can do is wait. For me, it all goes away as the flu/cold goes away. The other thing is that the burning pain and tingling is no where near the same intensity level as it was when GBS started.
I take magnesium (muscle support) b12 (nerve support) and vitamin C (immune support). True relapse is very rare with GBS, but like me you are still in the recovery window. I was told that GBS can take 12 months to 2 years or longer. This then makes sense to me that when my immunity gets a hit like with a virus or infection, then the recovery is stopped so that the body can focus on the new threat.
Keep positive and if you feel better once the infection clears, remember that for next time you get sick!
Burning pain was always worse for me than tingling - the tingling I got was akin to when you bump your funny bone. Annoying but not debilitating when your legs are literally on fire!
Then I had a lot of problems with my autonomic nervous system functions - Heart rate, Blood pressure, breathing, temperature regulation. It was a nightmare
My legs were always worse than my arms, then couple of months back I got this left arm pain that wouldn't go away. Coupled with the tachycardia I was getting, I was convinced i was having a heart attack. After 3 months of constant pain I decided that was probably not the case, and then it slowly started to fade away. As I'm typing today the arm pain has gone.
I've come to learn that pain and tingling is a sign of recovery, and obviously for me my arm was just in a repair stage which is (hopefully) now complete.
I got GBS this time last year. For 12 months in I've come a long way, I know that, but I still feel there is a long way to go.
I've been through a lot of times when I've wondered "Should I go back to the doctor, is this a symptom of a new illness or just GBS?" If you ever want to drop me a message feel free to do so, I'll be more than happy to help.
Thank you so much, I really appreciate it. Only someone Thad has had it understands what I’m going through and the fears too. It’d like a mind game. I Pray and read from the bible everyday. Do you have Facebook?
Nojabold said:
Yep.
Burning pain was always worse for me than tingling - the tingling I got was akin to when you bump your funny bone. Annoying but not debilitating when your legs are literally on fire!
Then I had a lot of problems with my autonomic nervous system functions - Heart rate, Blood pressure, breathing, temperature regulation. It was a nightmare
My legs were always worse than my arms, then couple of months back I got this left arm pain that wouldn’t go away. Coupled with the tachycardia I was getting, I was convinced i was having a heart attack. After 3 months of constant pain I decided that was probably not the case, and then it slowly started to fade away. As I’m typing today the arm pain has gone.
I’ve come to learn that pain and tingling is a sign of recovery, and obviously for me my arm was just in a repair stage which is (hopefully) now complete.
I got GBS this time last year. For 12 months in I’ve come a long way, I know that, but I still feel there is a long way to go.
I’ve been through a lot of times when I’ve wondered “Should I go back to the doctor, is this a symptom of a new illness or just GBS?” If you ever want to drop me a message feel free to do so, I’ll be more than happy to help.
Did you ever get random pains during your recovery? I have been working more and more physically active. Every couple nights I get some random pain that wakes me up. One night it was my hand. Last night it was in my thigh. It just kind of throbs for 30 minutes or so then goes away. Just wondered about your experience with this.
Nojabold said:
Yep.
Burning pain was always worse for me than tingling - the tingling I got was akin to when you bump your funny bone. Annoying but not debilitating when your legs are literally on fire!
Then I had a lot of problems with my autonomic nervous system functions - Heart rate, Blood pressure, breathing, temperature regulation. It was a nightmare
My legs were always worse than my arms, then couple of months back I got this left arm pain that wouldn't go away. Coupled with the tachycardia I was getting, I was convinced i was having a heart attack. After 3 months of constant pain I decided that was probably not the case, and then it slowly started to fade away. As I'm typing today the arm pain has gone.
I've come to learn that pain and tingling is a sign of recovery, and obviously for me my arm was just in a repair stage which is (hopefully) now complete.
I got GBS this time last year. For 12 months in I've come a long way, I know that, but I still feel there is a long way to go.
I've been through a lot of times when I've wondered "Should I go back to the doctor, is this a symptom of a new illness or just GBS?" If you ever want to drop me a message feel free to do so, I'll be more than happy to help.
Maybe not exactly like yours, but similar. My pains tended to last for longer than 30 minutes, as in weeks before disappearing. I remember asking my GP about a pain in my right elbow a while back, it felt hot to me to touch but he disagreed and decided it was ok.
It lasted about a month then disappeared. My main pain source has always been my legs and feet, which flare up from time to time. mostly now I just feel stiff and ache. I'm having a particularly bad day today.
What I hate is there seems to be no reason to a lot of these symptoms. I've been pretty good for about a week now, then this morning 'bam!!!' I feel terrible. Achey, lethargic, irritible, glasses back on... If only I could figure out what I did yesterday that was so different to the day before, but I've got nothing. And as I'm typing this my trapezius muscles just vibrated, I haven't twitched for a few weeks now!
I definitely feel better for conditioning myself though, just don't push too hard.
Did you ever get random pains during your recovery? I have been working more and more physically active. Every couple nights I get some random pain that wakes me up. One night it was my hand. Last night it was in my thigh. It just kind of throbs for 30 minutes or so then goes away. Just wondered about your experience with this.
Nojabold said:
Yep.
Burning pain was always worse for me than tingling - the tingling I got was akin to when you bump your funny bone. Annoying but not debilitating when your legs are literally on fire!
Then I had a lot of problems with my autonomic nervous system functions - Heart rate, Blood pressure, breathing, temperature regulation. It was a nightmare
My legs were always worse than my arms, then couple of months back I got this left arm pain that wouldn’t go away. Coupled with the tachycardia I was getting, I was convinced i was having a heart attack. After 3 months of constant pain I decided that was probably not the case, and then it slowly started to fade away. As I’m typing today the arm pain has gone.
I’ve come to learn that pain and tingling is a sign of recovery, and obviously for me my arm was just in a repair stage which is (hopefully) now complete.
I got GBS this time last year. For 12 months in I’ve come a long way, I know that, but I still feel there is a long way to go.
I’ve been through a lot of times when I’ve wondered “Should I go back to the doctor, is this a symptom of a new illness or just GBS?” If you ever want to drop me a message feel free to do so, I’ll be more than happy to help.
since I been sick this week with a bad cough and sinus infection, I’ve been totally out of it. My muscles are achy and I’m so scare of a relapse. I can’t wait to feel better. My tingling is out of control and stiff. I started to take fish oil today on top of my vitamins
Nojabold said:
Hi Tarhealing,
Maybe not exactly like yours, but similar. My pains tended to last for longer than 30 minutes, as in weeks before disappearing. I remember asking my GP about a pain in my right elbow a while back, it felt hot to me to touch but he disagreed and decided it was ok.
It lasted about a month then disappeared. My main pain source has always been my legs and feet, which flare up from time to time. mostly now I just feel stiff and ache. I’m having a particularly bad day today.
What I hate is there seems to be no reason to a lot of these symptoms. I’ve been pretty good for about a week now, then this morning ‘bam!!!’ I feel terrible. Achey, lethargic, irritible, glasses back on… If only I could figure out what I did yesterday that was so different to the day before, but I’ve got nothing. And as I’m typing this my trapezius muscles just vibrated, I haven’t twitched for a few weeks now!
I definitely feel better for conditioning myself though, just don’t push too hard.
It sounds like these unexplained pains may come and go. I am thankful they are going quickly for me. I have had strange random vibrations too. They seem to move around. Sometimes twitches - mostly my legs and now more my feet. Sometimes vibrations in my core - at times near my spine. May come and go for a few days in one area then go away. I am doing so much more now so I feel it may be related to that. And Ivy I’m trying not to let it scare me because I have come so far and it seems to be random. I do wonder it my body is weaker now and will do worse with time or recover with time. I am pushing myself and have had back off at times. I’m sorry about your pain and trouble. I know it is hard. I do find that on some bad days I need those readers (glasses) more too, Novabold. It’s so weird! I am running now and everyone thinks that I am back to normal. But I struggle inside many days after with stiffness, aches and pain flares, that I never experienced before but still glad to be able to do more activity. Guess I will keep fighting and trying to figure out how to move through this the best way.
Even though I’m walking better , my feet are so bad with the numbing and burning sensation, I d know what to do. Every time I use my cell phone(iPhone) the tingling in my hands gets so much worse for some reason. I don’t get it
My neurologist told me that it was nerve regeneration. That's great that you are walking better. They said that it would take 6 months for my nerves to heal. It's been 6 months and I am much better (very little numbness or burning) but still recovering. I think it takes longer. Hope you are better soon!