Apologises for all the questions folks but I am loving this community and talking with you all, I have learnt so much in such a short space of time.
Curious to get your thoughts on the below please. Thank you in advance.
1) Do you drink alcohol? - Personally speaking I rarely drink but I had read somewhere that alcohol depletes B12
2) Does the condition effect exercise and if so how did it impact you?
3) Has it impacted your daily work routine in any way and if so how?
4) Did anyone experience any weird eating habits? - Prior to being diagnosed and continuing to date I have been experiencing really strong cravings for raw onion, carrot and parsley. My work colleagues have found this hilarious as have I however prior to diagnosis I really felt it was my bodys way of telling me something was wrong
5) Where are you guys all from? - I am from Northern Ireland
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Lollyloo1978
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1.) Oh yes. I have restricted myself to just three days a week. I found there is absolutely zero difference between those days I do and those I don't. There is no reason at all why drinking should deplete B12.
2.) Oh yes. When first diagnosed I could barely walk 50m. Now, after four years, I can happily take the dogs out for a few miles. So I'm fine with slow and steady exercise. But I still get wrecked from anything remotely intensive. Pushing a car to start it has me sitting down gasping for 10 minutes.
It's like my energy tank doesn't get filled up as quickly as it used to. I can use energy up slowly and the tank will stay full. But if I drain it too fast then it stays near empty for quite a while.
3.) I'm lucky enough to have taken early retirement ten years ago. So I don't really have a work routine (apart from having to walk the dogs).
Hi! I hope lots of people respond to your questions - it will make it fun!
1) No - half a sniff and I'm trollied!
In animals (my training, but humans are animals) B12 is used in the liver to remove toxins and as alcohol is a toxin, B12 can be depleted by alcohol consumption.
2) Yes. B12 is required in the processes of energy release in every cell in the body and energy is especially required for exercise.
After 20+ years of symptoms without diagnosis I could barely walk (or talk). Even after 4 years of daily jabs I can only do a few hours at a time before my "batteries go flat" and I have to recharge by sleeping.
3) Yes!! I managed a farm where we produced beef, lamb, wine, apples and juice for sale directly to our customers and I was involved with every operation. I used to compete with our stock and produce and won many top awards. I had to give up and the farm was sold. For a while I could only manage to do simple jobs like cleaning for people because I couldn't think straight or remember anything.
I have gradually improved and now run the vineyard (10,000 vines) and orchard, breeding and calving of the cattle and the cattle show team again for the new owners. I am gradually becoming more involved in the sales side again as my mind comes back.
4). Not particularly. Leastways I don't really remember!! I sometimes craved avocados (probably needing potassium) and green stuff (probably folate) and often chocolate (magnesium)!
1. Yup. A small glass of red, I’m fine. No more benders though, otherwise horrific palpitations!
2. Yes, however can now walk steadily for hours, however real exertion totally wipes me out. So it’s a matter of self management.
3. Yes. Lost my career before being diagnosed. Was a psychotherapist and managed a charity. Unable to remember what clients were saying, let alone process it! Repeated visits to GP asking to be referred for dementia assessment. Unable to drive as I repeatedly got lost or had to pull over in a panic about where I was, if I was on the right side of the road, etc! Horrific mood swings. Couldn’t read and certainly not fundraise for the charity or manage people. As trustees couldn’t find a replacement for me, they closed the charity, which had been a life’s work. Devastated. Four years later, I’m totally back! Loving being able to live again in every way, but needing to be tuned to my own body..
1. I haven't been able to drink alcohol for years. If I have a glass of wine I can be sure of having a round of facial flushing and a headache.
2. Before receiving B12 shots I could barely walk a straight line because of dizziness. Light housework wore me out. After B12 shots I'm very energetic and able to walk, garden, clean the house, etc. for the first two weeks after my shot. By weeks 3 and 4 I notice a lowering of my energy levels. I know I need another shot when I find myself really needing a nap in the afternoon.
3. I retired early from my office job last year. I initially started the retirement process because I felt I couldn't continue working because of low B12 side effects. Trying to remember things I should know, trying to stay awake at my desk. Just walking down the hall to my office was a struggle some days. I thought I was dying and told my husband I was going to quit. He was very supportive so now I'm retired and loving it. I feel a little bit guilty because I feel good most of the time so the reasons why I retired are no longer valid, but once the retirement ball started rolling it was hard to stop it.
4. The only thing I remember craving prior to shots was beef. Sometimes I would just have to have a steak or hamburger. I don't seem to do that anymore.
5. I'm from the state of Maryland which is located on the east coast of the US.
1. Alcohol yes, but I can't handle more than a glass or two of wine and infrequently. I will get a migraine or my hands and feet will swell if I go even a bit overboard.
2. I got sick first in high school. I dropped out of track my junior year. I slept on the floor in between classes and often fell asleep during class. I quit college after struggling through it a couple years. I loved running but still at 33 can't run. I can only manage low impact exercise a couple times a week if I am not busy. I still become immobile and ,my body feels sick if I do to much and that includes cleaning my house. So, if it is a busy week I can forget doing any sort of exercise. I bought an exercise bike for my living room so it's there when I do feel so inclined. Mostly I don't do more than 10 minutes but every once in a while I can manage 20. Walking is great but I don't live in a safe enough area to just go for a walk.
3. So when I did work I could not handle more than a part time job. Thankfully I am able to stay home with my two young kiddos right now. I do have trouble keeping up in the family when we go to public places and are out and about. If I have to go grocery shopping which we do the bulk of every two weeks it is all I can do. Or if today I have to clean the car than I know I won't have energy to anything other than dishes and dinner and very often I need a recovery period. I have on many occasions physically shut down and can only function after a nap. because my eyes refuse to be open.
4. When I was at my sickest I craved sausage. Now I just crave fatty meat and pork, goat cheese, potato chips, and of course anything with caffeine that is sweet especially chocolate.
I used to enjoy a glass of red wine before I got ill.
Haven't had any for 7 months . Darnt as still a long way to go. I look forward to that glass of wine when it feels right .
I used to cycle , swim and walk a few miles. Shopped till I dropped. At present I walk round the block . A 10 minute walk. Some days tempted to do more. Other days a real struggle.
I'm not in paid work now.I used to clean for family and do jobs. I can't help them at present. I'm having to pace to get anything done so tend to do veg early am or random jobs when I can. It's still early days for me as alot of neurological symptoms. Virtigo , balance ect.
I craved yoghurt. I don't even like it much. Also cottage cheese. Went off dry food snd coffee. Wanted more soups but not bread?? That has continued. I went off chocolate and sweet things initially. ...very odd . That didn't last long lol
As I lost nearly a stone in weight it has been good to put some weight on. As got far too skinny.
Thank you to everyone who has responded. I have really loved reading all of your responses. Some have made me laugh and some have made me sad however what I am really grateful for is that we have this wonderful platform to connect with all around the world. The human body is amazing in so many ways but I just wish someone would come up with a cure to PA. I am beginning to feel like this is one of those "invisible illnesses", just because you can't see it doesn't mean it isn't real. This kind of makes me sad because I believe that with conditions like this we might have an extra battle to face just to find acceptance from colleagues, medical professionals and maybe even friends and family. Don't you agree? Any way enough of my sad talk, we all have to stick together and lift each other up when life gets a bit sucky. Any how's its my bedtime here in the UK so I am off to count sheep. Nite nite guys X
(Cheating, as not diagnosed with PA: will "B12 deficiency" then "functional B12 deficiency" do ? I'm going to say "yes" to that .)
1) YES re. alcohol: not going "on one"- couldn't handle that, but 1/2 bottle of wine with a meal, certainly okay. I am more of a lightweight than before though, it's true. As my appalled vegan niece informs me that red wine is often enhanced with bull's blood for colour, it possibly helps my vegetarian, deficient self ! (= my excuse; don't take it away!)
2) Exercise: As a carpenter and joiner turned woodwork teacher, I always thought of myself as fairly strong. Now arms get shakey hanging Christmas tree decorations or changing a lightbulb. However, can walk and walk and walk. Can swim and swim. Can't run at all or stand still for too long. Probably a bit like fbirder , as at first, struggled to walk.
A lot of effort and willpower involved - felt like fighting against strong rubber band round thighs.
3) Work: off sick for 15 whole months, then back on 1 day a week, now 2 days. Still trying.
4) YES: "addicted" (according to partner) to Broncho stop Cough pastilles - an expensive habit, just say "No" - then later anything with strong ginger taste: oatcakes, fresh ginger in food/ drinks, Kombucha etc. which seems to be more acceptable an addiction to partner !
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