Hi my name is Callum. I’m 22 and was an avid cyclist.
At the end of June I went out for a ‘few’ drinks with my better half in Liverpool after getting a new passport for her. The day after I felt what I thought was a hangover, and couldn’t get my head off the pillow, to which the girlfriend was less than sympathetic. I was ill with the runs for 6 days afterwards.
3 weeks afterwards I experienced serious lack of strength in my upper arms whilst at work, and struggling to change gear on my bike. I put this down to tiredness and just carried on and got a good nights sleep. A couple of days later i went to the doctors as things had got worse.
The response I got was “It’s probably the potholes in the road from when you cycle.” Ive been cycling for 16 years and never had this problem so i have since changed doctors.
I suffered through the pain for w more weeks before the beyter half ordered me to the hospital.
After 4 days in there and no further deterioration, and apparently no need for IVIG according to the specialist from Salford Royal.
Back at home the worst feeling is the reliance on other people for simple everyday tasks, such as putting toothpaste on my toothbrush.
Sorry for the longwinded story, really struggling with trying to stay positive right now, ive been told i can expect a full recovery, but after hearing everyones stories this seems unlikely.
I have improved so much. I was able to work again for the first time since everything started about 9 weeks ago. I am tired but so much better. I was able to run for about ten minutes yesterday. I was running 4 to 6 miles a day about 5 or 6 days a week before this happened but I feel so fortunate just doing a little of what I love so much. Try to stay positive. I think that it really does help. I'm taking it one day at a time now, focusing on improvements instead of shortcomings. Don't give up hope. So many people recover from this.
Hi Callum, It seems you skipped over the part where you were actually diagnosed with GBS, but we'll assume that somewhere in there that's what happened. If you got through the worst of it without IVIG or plasmapheresis treatments, or intubation/ventilator support, or a gastric (stomach) tube insertion, or full-scale paralysis, then you have gotten off fairly easily, comparatively speaking. This is probably scant comfort if you are currently experiencing the pain of nerve regeneration without heavy pain medication (i.e. morphine or similar). Are you mobile at all, or confined to your bed, or wheelchair? If you have the use of your arms, but need help with things like toothpaste, have patience, this will improve. If your physical therapist gave you exercises to do in bed, or in the chair, do them regularly. (A favorite of theirs these days seems to be this big rubber band-like thing that you stretch.) Your muscles will regain their strength, but it will be much more slowly than you are used to, so have patience. Let us know how you fare.
What a tough go Callum, praying for a complete recovery for you ASAP, hang in there, you can do this. I had GBS 30 years ago and made a complete recovery, it is possible!:)I Unfortunately I got hit with bout # 2 in May at age 65 - much harder this time to fight that wellness fight but 4 months into it again, I am determined to succeed. Rooting for you!
Being young and fit are major benefits. I know that it is hard to go through, but you can get better. I’m 32 and am at 4.5 months since treatment, and I’m doing SO much better. Try to get some physiotherapy and make sure that you go back to a neurologist if your symptoms get worse.
Hey Callum - I'm in much the same boat - but down south in Berkshire>
Mine came on during a cruise a few weeks afgo, and I'm bloody happy its fairly mild, or I'd have been in real trouble bobbing around the Med m9iles from good hospitals. Came off the cruise having real difficulty walking, and went straight to A&E who kept me in for a week. They thought it had stopped and let me out without having done any treatment. It got worse and was back into aqn acute med ward within three days with a numb band round my chest anbd stareti8ng to feel it when breathing. Then the did the treatment - 5 days of immunoglobulin. I've been out about trwo week now and dont think its getting worse any more. (Not getting better either, but sounds like that takes time...)
Anyway - some of what you say sounds the same as me - toothpaste... what a hassle that is! You're right; itis embarrassing when you need help to do simplke things like getting dressed, or having a bath - thats a bugger to get out of....
I can walk a bit(like a duck) but hands are useless. They say it goes with time, so I'm waiting for the first signs - but I'm guessing its slow.
How about we meet up for a pint when we're able... in a few moinths probably... maybe round Christmas?
I was just posting the link below to James P.in this group, and it seems very relevant to your situation also. Support groups contain much information and encouragement, but people with 100% recoveries tend not to stay on them and so this type of recovery is under represented. Every case is different but complete recovery is possible.
Hey Callum keep your spirits up stay positive as hard as that is to do. Everyone’s recovery is different your age and physical fitness will definitely help in your recovery. It’s very tough to rely on others and it is tough for them to understand what you are going through. I just had my 7 yr mark of having GBS if I can share any of my experiences with you please let me know I am more than happy to chat