I'm reaching for some comfort and a bit of advice..
Had an adventure yesterday and am optimistic but a little unsure.. I started self injecting in Jan after diagnosis in Dec 2016. I've gradually reduced neurological symptoms I thought were down to old age. I'm 5 weeks into a 7 week holiday training as a coastal skipper on a yacht, which is full-on physical (12 hours a day nonstop on my feet (my diagnosis started from ankle pain and tingling) and lots of pulling on ropes.. and major bruises (I was badly hit on back and legs repeatedly 3 days ago by a loose sail flapping). I've been injecting weekly while sailing, and taking folate.My ankle pain and stiffness have been bad but not incapacitating, though it's getting worse... I can only walk stiffly and it's hard to move in the morning ..I waddle and use my arms a lot to move around the boat
This Friday after a Sunday injection I felt really weak and foggy. Had to rest. Then find I left my b12 in a fridge in Malaysia .. Am now in Thailand... Pharmacies sent me to Patong hospital who sent me to Phuket international hospital. They were amazingly helpful and I got myself 4 ampules. I suspect it is Cyano or methyl not hydroxy (from the v limited conversation I had with non-native English speakers..I speak no Thai). The ampules are only labeled b12. There was no container. The paperwork is mostly in Thai and confused me. Anyway, I took a dose and fell asleep.. Now it's 10 hours later.. not sure how I'm feeling.
First.. Thanks to this forum for giving me enough understanding to communicate what I needed. If I hadn't known from this forum there were different forms to inject I would have been turned away completely by the third person I spoke to in the hospital.
My Q is whether I should expect symptoms to worsen when I'm being so active? I'm usually fairly fit (for 53) but have been on crutches for 8 months cos of the b12) and have got fatter (8 lbs) and out of shape. I would expect to be tired on this trip but not to be quite so physically weak and foggy as I was yesterday. It feels wrong. I bought 4 ampules. I'll get my own stash back in 12 days so this means I can double the dose to twice a week.
Sat in bed now I'm having quite a bit of tingling and numbness in hands (unusual) and feet (worse than usual). I feel better generally (10 hours of sleep helps).
I feel a bit anxious as next week I'll be sailing on remote islands (prob can get phone signal with an hour's sail if there's an emergency.. Which would inconvenience others).
Am I being irresponsible to carry on sailing? I think the worst that can happen is I get weak and feel rotten. I won't do dangerous on deck stuff if I'm feeling wobbly and so far I've managed through the ankle pain.
I just felt a bit alone and thought of this forum... I am happier having some b12 but wish I knew whether it's a different type and assuming it is, what to expect. Should I inject another one quickly, to help heal? I shall have an exam (skippering the boat for a few hours) on the last day, in 12 days' time) and I don't want to be brain dead for that like I was today ( I forgot where the engine starter was...)
So, i'm reaching out for some comfort, really, and advice about unaccustomed physical activity with b12 deficiency.
Mashie - soldiering on !
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Mashie44
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Thank you... For putting my at test and for the research. I think the hospital was good and am confident of the sharps. Comms were hard (only the Dr really understood me and she was taciturn.. But for a £15 walk-in consultation, brilliant!)
I'll give it a day or two as you suggest. I have internet at weekends as we sail around and anchor during the week, we just stay in hotels Fri and Sat.
And thanks for reminding me how lucky I am to be doing this! Doubly so since a year ago I couldn't walk.
It would be such a shame to have to give up now. I see you have already completed five weeks of the seven.
I have been to Bangkok a number of times but not for a long time. If my memory is correct, the Phuket Hospital is the one used by most 'internationals' there, and from its website looks pretty good.
I am actually a New Zealander, so understand the draw of the sea, so to speak. I also know the depression etc from not being mobile, able to walk without crutches - so you are doing marvellously!
I was finally diagnosed with PA a year ago after 6-7 years of going downhill. After a few false starts, with my doctor's agreement, since Jan 2017 I am self injecting once a week which has made a marked improvement to my physical and mental wellbeing.
This forum has helped me heaps, so it is now my turn. If you have read any of my other replies (no posts yet) I am actually looking at setting up a NZ PAS group and currently researching etc to write a full information post or similar for NZers as our medical protocols, availability of B12 etc differs from those in the UK, USA and other places. I am a retired researcher and have been doing the research for myself as I could not find much info in one place when I was diagnosed. So I want to share what I have learnt.
Have a wonderful two weeks. And I want to hear how it goes.
Yes, you definitely do use up more B12 with any activity, be it physical, mental or emotional as it is used in energy release within cells. You also use more for healing as it is used a component of DNA as cells replicate to replace damaged cells with new ones.
If you are feeling symptoms of deficiency and these go with supplementation it shows that you need the extra B12.
You will also need extra supporting supplements to make the extra B12 work: a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron.
I suggest that you Google these and see what the symptoms of deficiency and excess are so you can judge what you might need to take and how you might be able to get more of what you need from your local area.
If you have trouble with translation you might be able to download the "Google Translate" app which will translate most languages into English (or whatever you choose) and vise versa. If you have a smart phone with a camera (or tablet, etc, equivalent), it will even "read" text and automatically translate it for you as you hover over it.
Be aware that different people have different responses to different types of Cobalamin and you may need more of one than another to get the same effect.
It's up to you and you must put safety first but it seems worth doing what you can to make the most of the fantastic opportunity available to you now!
Go skipper!
PS 90+ might be getting towards "older", 53 is still young!!
Thanks.. especially re age - props! .I started to feel tired and weak (having always been athletic) when I was about 50 and thought it was unavoidable. In retrospect it was the b12d kicking in. Still learning about supplementation (I brought a lot of vitamins with me so ok on that) and still new to the jabs
Thanks for the thought re phone. Thai script is a challenge, if I can get it to work it will be fun. I have examined the meagre paperwork carefully and I suspect it doesn't say what I have (most of it is a receipt, plus my height, weight, temperature, blood pressure etc which they carefully recorded. I had the highest BP ever (144 over 77, am usually 110/70, sometimes 120/70. Have never seen it anywhere near that high so shall research that too.. right now am resting up, with a Thai massage booked (seemed to help ankles last week).
Just read through all of your posts etc. For some reason I thought you were male! Doesn't matter - I am female and an oldy. 70 in a few months. Where did the years go to?
BUT now know you are a science researcher, with maths, who did a great job convincing your Dr to increase your injections etc. WE NEED YOU.
Take care and when you get back to the UK, I would love a discussion as to which research, documents etc helped you to persuade your Dr.
Only thing I will hold against you is your short menapause! Mine lasted over 20 years from about 42 to last period at 62 (started at 10!) Just joking.
Take care.
Edit - And hi to Deniseinmilden. Have some questions etc for you in due course. I always read your comments etc.
Very happy to chat when back home... Shall go and find out how to pm you.
Just failed to walk to the shower so am shelving the massage idea :-(. One ankle is v painful. Had to crawl back to bed. I think air con exacerbates the usual 'morning stiffness' of Achilles tendinitis.
high levels of physical activity will deplete B12 - athletics coaches and trainers can often be more aware of B12 than many GPs.
On average people retain cyanocobalamin twice as long as hydroxo - but that is an average - and for some people it is the other way round, so may be that you will need more frequent cyano than hydroxo.
if I've been very active or haven't kept my B12 topped up then I get the stiffness in the ankles - and pains, I start to find that being with a lot of people or somewhere where there is a lot of noise is really difficult because I can't filter out noises anymore - like everything is just shouting - my balance starts to go and I just find moving really difficult - in the past I can remember (before I knew I had a problem with B12) there were occasions when I actually had to be pushed up the stairs to bed - just couldn't do it on my own ... and the last time my levels got really low it took me about 20 minutes to get up just one flight of steps I was so slow!
I read your post with interest as the onset and symptoms you describe matched my own very much, especially the ankle issues. I also have developed an inflammatory polyarthritis (Spondyloarthritis) and am just wondering if your issue is entirely due to b12. I take Enbrel along with Injected Methotrexate and Celebrex now, and my quality of life including mobility is much improved. I was diagnosed severely deficient in B12, low ferritin levels, deficient in vit d and also in vit B1. I do still experience "flares" which are sudden onsets of pain and stiffness, worse in the morning upon waking. Achilles' tendon pain is typical. Extreme fatigue accompanies a flare which I have learned is because your body is exhausted from fighting the inflammation.
Enjoy your sailing adventure, rest when possible. Perhaps check with rheumatologist when you get home?
Hi.. Thanks, that's interesting...I was vit D deficient before coming away but GP felt 7 weeks in the sun would fix it. Have had low ferritin in the past. Also have early onset osteoporosis (at 38 was described as lower quartile for a 50 year old). Hoping to check vit D when I get back as if 15 hours sun a day doesn't fix it, I've got a problem. For now, I'm just praying to get through the pain for 2 weeks more with drugs, heat and willpower.
I had a lot of gut problems around menopause... After 6 months of investigation for bowel cancer I was advised to eat spelt.. Which I didn't do. it reduced with hrt and is far better now. So much to learn about! You've raised some interesting directions of thought. Thanks!
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