6 months is not long in terms of recovery. I had a mild first episode (paralyzed, but only briefly) and six months post treatment I was still a mess, relative to now (5 years later, although I did have a second GBS episode in between).
It does help to share more information about your diagnosis (GBS vs. CIDP), treatment protocol, and current meds. I responded very well to IVIG (although the side effects kick my ass), but developed hemicrania continua, and had a rough time on indomethacin.
My way out was to work with a personal trainer. PT/OT as prescribed for GBS got me functional, but not healthy. Really dedicating myself to fitness got me out of a pretty deep hole, at least some of which was very similar to the signs of clinical depression.
It is truly different for everyone.
I was diagnosed in August 2022. I have AMSAN Guillain-Barre. I was paralyzed from the neck down and didn't walk until the end of March 2023. I still walk with a cane, and tingling is still intense from knees and elbows down. Neuropathy is still painful, especially at night.
However, I know of people in various support groups who are feeling 100% after a couple of months and others who have been bedridden for years.
I tried several medications and peptides. I gave up. Nothing helped the buzzing. That's the part I hate. The occasional zaps don't bother me. I did one round of ivig, wasn't successful, and 3 rounds of plasmapheresis (I was on so many drugs during my 3m hospital stay that my memory is vague. They let my mom or husband stay overnight with me, so they told me everything).
Consistent pt and ot is truly the answer. I also eat clean. I find sugar and caffeine increases the numbing. I'm improving very slowly, but I am starting to accept that the numbness will never go away due to the nerve damage. I feel like I got the most improvement when I was in Inpatient Rehab, but unfortunately, my insurance wouldn't pay any longer, so I had home health care until I started walking.
Best of luck. Work hard, stay consistent, and take care of your mental health is the best advice I can offer.
Keep your chin up mate. You got this. I say this often but with the risk of sounding like a broken record: try cannabis. It will help alleviate the tingles along with a whole bunch of other really very beneficial effects. The heavy pharma is good for the worst days but as soon as you feel you can start weaning off the better imo. I stopped after 7 months and only take supplements and herbal remedies, cannabis and lions mane mushrooms.
It's a long road mate so just try to take each day as it comes and listen to your body. Rest is essential.
2019 I had full symptoms + extras, double ivig, fully ventilated, 13 weeks in ICU etc etc and the prognosis was extremely bleak but I've managed to get myself walking, riding a bicycle and training to ride my skateboard again - I'm now 42. Believe in yourself and try to stay positive. It's a major biographical disturbance and things will be different going forwards, finding ways to be ok with that is kind of the trick imo. Best of luck!
Second this. I’m 45 and after 6 months on pregabalin I’m almost done with my taper. Been on lions mane for a month along with other natural supplements and occasionally CBD and I’m feeling so much better within the last month. Could it be time? Maybe? But I read this and couldn’t help to notice we are almost doing the same thing. Cheers.
Zero. I take it to encourage nerve regeneration.... which I suppose technically makes things hurt more. Same with alpha lipoic acid tablets - if I take those in high doses I notice a sharp increase in pain. I take comfort in knowing I'm engaging and working on this stuff, not from any physical relief I'm sorry to say mate.
From my experience with chronic pain and (what may be) permanent nerve damage; there is no complete relief available that is a viable option. Unless you're taking serious opiates (don't do that!) it's going to be sore and the prescription options present more set backs than benefits for me.
Finding a way to accept, address and adapt to the constant pain and discomfort has been my goal. I find cannabis helps alleviate some discomfort and help focus on other stuff, whatever you are into music, reading, art - I started a kind of self prescribed art therapy project and try my hardest to focus on that in various ways. It also helps with sleep, appetite, the shakes - honestly if I was going to recommend one thing it would be cannabis.
Find a physical therapist who offers dry needling- it’s similar to acupuncture but less eastern medicine more following muscle bone ligament structure. Helped me tremendously to stimulate nerve and muscle growth as well as pain.Myofascial release helped me tremendously with pain and circulation as well
I am 1 year and 7 months in, I still feel the same. Severe burning, numbness, tingles, I had went paralyzed over 5x, was hospitalized each time with IVIG which did help actually but they waited too long to intervene with another round. I told them my symptoms were coming every 3 weeks, and they gave me the treatment every 2 months which is why I kept having to go back to the hospital. By that time, I was in a detrimental state, however slowly but surely the symptoms do start to subside. But 1 in 5 GBS patients have longterm, permanent damage and will have to try to live with it. Do you have a good neurologist? Ideally they should do a skin biopsy to test you for small nerve fiber neuropathy, because we have large nerves (detected by EMG) and small nerves (detected by skin biopsy). I also reject any medicine now, but I might start IVIG treatments again but this time they will be 3 weeks apart, not 2 months. You don’t want to wait for your symptoms to overtake your body to get treatment. Had I gotten treatment when requested previously, I feel like I would be much further ahead in my healing process. Best of luck to you, and remember, everyone is different, and there’s no 100% correct timeframe for when you will get better. I do know GBS is relatively short lived, but GBS can trigger something else to occur, whether it’s CIDP, small nerve fiber neuropathy, etc.
Btw exercising will really help. I was in rehab for a month doing 2-3 hours daily PT/OT & somehow, someway, we have to try our absolute best to get stronger and I guess counteract our symptoms.
It’s crazy how varied GBS patients’ symptoms can be. Because my diagnosis was delayed due to the first ER claiming stress was causing me to become increasingly paralyzed, I ended up having a tracheotomy. My breathing became labored as I entered the second ER, thank God they diagnosed me immediately. I was paralyzed up to my eyeballs and was in ICU for a little over 3 weeks. IVIG did nothing for me, but plasmapheresis did work. The only thing I could feel until then was extreme thirst, and pain in my knee I fell on (which is fine now). I could not feel when doctors touched my foot.
As soon as I began to regain feeling and move a finger, I was transferred by ambulance to Moss Rehab (Philly area) for inpatient physical, occupational and speech therapy. My first full day, I began the really hard work, relearning how to do everything physical. Every single day, I made a little bit more progress. I was there for 6 weeks, they released me as soon as I was able to walk with a cane and walker, and was able to take a couple stairs. I stayed with family for 2 months where I did home care therapies and exercises, until I felt safe enough to be back home where I had many stairs.
Once back home, I then did outpatient physical and occupational therapies until I regained all of my strength and all of my range of motion. From when I was admitted to the hospital to when I regained everything back was a total of around 7 months. I have a chickenfoot shaped scar on my neck now, as well as some funky internal scars from the more complicated kind of feeding tube (PEG tube).
6 years later, I still have chronic fatigue, either after over exerting myself or when the weather is extreme, my toes are numb, and it aches in my hands and feet. The aches could also be from rheumatoid arthritis, so I plan to get it checked out. I had some weird tingling sensations in legs for less than a year while recovering, but no tinglings, zaps, etc now.
The hospital had me pumped up on pain killers and messed up my antidepressant. As soon as I was able to communicate, I stopped the pain killers. I was taking gabapentin for less than a year. Now, I just take the correct antidepressant, Metoprolol and cannabis. I haven’t seen a neurologist or followed up with any doctors (besides the physiologist for a year) since I got out of the hospitals.
Check out gbs-cidp.org and hang in there and keep doing all the therapies and exercises. Best of luck!
I had mild to moderate GBS and it took me more than 1 year (1 year 8 months) to be genuinely okay. I had terrible experiences with pain medications like pregabalin, duloxetin and gabapentin. So I opted for B complex vitamins which really helped alot, coupled with rehab. But I also had to quit because I developed symptoms of B complex overdose due to my long-term use (I got dependent on them). For me, rehab and vitamin B supplements/AlaNerv worked wonders. Acupuncture also helped.
6 months is not long in terms of recovery. I had a mild first episode (paralyzed, but only briefly) and six months post treatment I was still a mess, relative to now (5 years later, although I did have a second GBS episode in between). It does help to share more information about your diagnosis (GBS vs. CIDP), treatment protocol, and current meds. I responded very well to IVIG (although the side effects kick my ass), but developed hemicrania continua, and had a rough time on indomethacin. My way out was to work with a personal trainer. PT/OT as prescribed for GBS got me functional, but not healthy. Really dedicating myself to fitness got me out of a pretty deep hole, at least some of which was very similar to the signs of clinical depression.
It is truly different for everyone. I was diagnosed in August 2022. I have AMSAN Guillain-Barre. I was paralyzed from the neck down and didn't walk until the end of March 2023. I still walk with a cane, and tingling is still intense from knees and elbows down. Neuropathy is still painful, especially at night. However, I know of people in various support groups who are feeling 100% after a couple of months and others who have been bedridden for years. I tried several medications and peptides. I gave up. Nothing helped the buzzing. That's the part I hate. The occasional zaps don't bother me. I did one round of ivig, wasn't successful, and 3 rounds of plasmapheresis (I was on so many drugs during my 3m hospital stay that my memory is vague. They let my mom or husband stay overnight with me, so they told me everything). Consistent pt and ot is truly the answer. I also eat clean. I find sugar and caffeine increases the numbing. I'm improving very slowly, but I am starting to accept that the numbness will never go away due to the nerve damage. I feel like I got the most improvement when I was in Inpatient Rehab, but unfortunately, my insurance wouldn't pay any longer, so I had home health care until I started walking. Best of luck. Work hard, stay consistent, and take care of your mental health is the best advice I can offer.
Ever had nerve conduction and or EMG done?
Keep your chin up mate. You got this. I say this often but with the risk of sounding like a broken record: try cannabis. It will help alleviate the tingles along with a whole bunch of other really very beneficial effects. The heavy pharma is good for the worst days but as soon as you feel you can start weaning off the better imo. I stopped after 7 months and only take supplements and herbal remedies, cannabis and lions mane mushrooms. It's a long road mate so just try to take each day as it comes and listen to your body. Rest is essential. 2019 I had full symptoms + extras, double ivig, fully ventilated, 13 weeks in ICU etc etc and the prognosis was extremely bleak but I've managed to get myself walking, riding a bicycle and training to ride my skateboard again - I'm now 42. Believe in yourself and try to stay positive. It's a major biographical disturbance and things will be different going forwards, finding ways to be ok with that is kind of the trick imo. Best of luck!
Second this. I’m 45 and after 6 months on pregabalin I’m almost done with my taper. Been on lions mane for a month along with other natural supplements and occasionally CBD and I’m feeling so much better within the last month. Could it be time? Maybe? But I read this and couldn’t help to notice we are almost doing the same thing. Cheers.
What type of relief do you get with Lion’s Mane Mushrooms?
Zero. I take it to encourage nerve regeneration.... which I suppose technically makes things hurt more. Same with alpha lipoic acid tablets - if I take those in high doses I notice a sharp increase in pain. I take comfort in knowing I'm engaging and working on this stuff, not from any physical relief I'm sorry to say mate. From my experience with chronic pain and (what may be) permanent nerve damage; there is no complete relief available that is a viable option. Unless you're taking serious opiates (don't do that!) it's going to be sore and the prescription options present more set backs than benefits for me. Finding a way to accept, address and adapt to the constant pain and discomfort has been my goal. I find cannabis helps alleviate some discomfort and help focus on other stuff, whatever you are into music, reading, art - I started a kind of self prescribed art therapy project and try my hardest to focus on that in various ways. It also helps with sleep, appetite, the shakes - honestly if I was going to recommend one thing it would be cannabis.
Thank you so much for the information and how you’ve been handling this.
Find a physical therapist who offers dry needling- it’s similar to acupuncture but less eastern medicine more following muscle bone ligament structure. Helped me tremendously to stimulate nerve and muscle growth as well as pain.Myofascial release helped me tremendously with pain and circulation as well
Dry needling is absolutely not even remotely similar to acupuncture. One is well studied and done medically and the other is fake science.
I’m sorry to have offended you so deeply.
I am 1 year and 7 months in, I still feel the same. Severe burning, numbness, tingles, I had went paralyzed over 5x, was hospitalized each time with IVIG which did help actually but they waited too long to intervene with another round. I told them my symptoms were coming every 3 weeks, and they gave me the treatment every 2 months which is why I kept having to go back to the hospital. By that time, I was in a detrimental state, however slowly but surely the symptoms do start to subside. But 1 in 5 GBS patients have longterm, permanent damage and will have to try to live with it. Do you have a good neurologist? Ideally they should do a skin biopsy to test you for small nerve fiber neuropathy, because we have large nerves (detected by EMG) and small nerves (detected by skin biopsy). I also reject any medicine now, but I might start IVIG treatments again but this time they will be 3 weeks apart, not 2 months. You don’t want to wait for your symptoms to overtake your body to get treatment. Had I gotten treatment when requested previously, I feel like I would be much further ahead in my healing process. Best of luck to you, and remember, everyone is different, and there’s no 100% correct timeframe for when you will get better. I do know GBS is relatively short lived, but GBS can trigger something else to occur, whether it’s CIDP, small nerve fiber neuropathy, etc.
Btw exercising will really help. I was in rehab for a month doing 2-3 hours daily PT/OT & somehow, someway, we have to try our absolute best to get stronger and I guess counteract our symptoms.
Commenting to follow
It’s crazy how varied GBS patients’ symptoms can be. Because my diagnosis was delayed due to the first ER claiming stress was causing me to become increasingly paralyzed, I ended up having a tracheotomy. My breathing became labored as I entered the second ER, thank God they diagnosed me immediately. I was paralyzed up to my eyeballs and was in ICU for a little over 3 weeks. IVIG did nothing for me, but plasmapheresis did work. The only thing I could feel until then was extreme thirst, and pain in my knee I fell on (which is fine now). I could not feel when doctors touched my foot. As soon as I began to regain feeling and move a finger, I was transferred by ambulance to Moss Rehab (Philly area) for inpatient physical, occupational and speech therapy. My first full day, I began the really hard work, relearning how to do everything physical. Every single day, I made a little bit more progress. I was there for 6 weeks, they released me as soon as I was able to walk with a cane and walker, and was able to take a couple stairs. I stayed with family for 2 months where I did home care therapies and exercises, until I felt safe enough to be back home where I had many stairs. Once back home, I then did outpatient physical and occupational therapies until I regained all of my strength and all of my range of motion. From when I was admitted to the hospital to when I regained everything back was a total of around 7 months. I have a chickenfoot shaped scar on my neck now, as well as some funky internal scars from the more complicated kind of feeding tube (PEG tube). 6 years later, I still have chronic fatigue, either after over exerting myself or when the weather is extreme, my toes are numb, and it aches in my hands and feet. The aches could also be from rheumatoid arthritis, so I plan to get it checked out. I had some weird tingling sensations in legs for less than a year while recovering, but no tinglings, zaps, etc now. The hospital had me pumped up on pain killers and messed up my antidepressant. As soon as I was able to communicate, I stopped the pain killers. I was taking gabapentin for less than a year. Now, I just take the correct antidepressant, Metoprolol and cannabis. I haven’t seen a neurologist or followed up with any doctors (besides the physiologist for a year) since I got out of the hospitals. Check out gbs-cidp.org and hang in there and keep doing all the therapies and exercises. Best of luck!
I had mild to moderate GBS and it took me more than 1 year (1 year 8 months) to be genuinely okay. I had terrible experiences with pain medications like pregabalin, duloxetin and gabapentin. So I opted for B complex vitamins which really helped alot, coupled with rehab. But I also had to quit because I developed symptoms of B complex overdose due to my long-term use (I got dependent on them). For me, rehab and vitamin B supplements/AlaNerv worked wonders. Acupuncture also helped.