Just starting to get over illness (face pain, plenty of sneezing, mucus, aching joints) - and hadn't had a bad night's sleep last night.
Then just small things: I was a day late with my B12 injection, as I just hadn't felt up to it yesterday. Didn't do a very good job of it - a bit of blood after, then swelling under skin. Ended up with a lump. Had a healthy breakfast after - fruit, live yoghurt, walnuts and honey - but kept accidentally biting inside my lip while eating. I remembered that that was something that used to happen, once long ago.
I watched a bit of daytime TV - a senior NHS worker was talking to a TV doctor about long covid. Not as a professional but as a sufferer. She has been unable to return to work, from what had seemed a mild case of covid, for 3 years now. As has been discussed here, and pointed out by Martyn Hooper (founder of the Pernicious Anaemia Society), the description of symptoms sounds very similar to those of B12 deficiency. As did her means of coping with it - what she called "The Three Ps":
1) Prioritise - you won't be able to manage to do all that you once could, so will have to decide what is most important to you.
2) Pace - if you do a lot on one day, you will need to leave a day to recuperate after that.
3) ????
Well perhaps this is an indication of B12 deficiency in action. I cannot now recall what the third P was ! Anyone else watch it ?
Here are a few suggestions:
3) Paddle: keep on treading water until medical help arrives
3) Pretend: most people, even those close to you, will not notice that you are dreading an upcoming event, are then faking energy you don't have and will pay for it later
3) Postpone: still make arrangements as if you know whether you will be able to manage to keep those promises, then let people down at the last moment because you can't
Anyway, having been ill, I'd run out of a few things, so we went supermarket shopping. A bad idea as it turned out. Loud sneezing. Louder yawning (air-hunger). Confusion and exhaustion. Later, regretfully, impatience too. Like a return of the bad old days ....
I'd been nodding my head in agreement when the medical professional on TV was talking, then forgot half of what she'd said and totally ignored the other half.
Nothing dramatic, just a series of small disappointments. Let's hope tomorrow will be a better one. Maybe it was Patience ?
So. How was your day ?
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Cherylclaire
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Hi Clive - Sorry to hear that you've not been well either.
Loved seeing the photo you posted on your last reply, with your granddaughter.
Don't think that my cold had much to do with any vaccine - more to do with Marathon-watching in the downpour on Sunday ! Always that bit harder to get rid of anything now .
Sneezing so sudden and loud that I made people in the supermarket jump: I've never had so many blessings !
My day was pretty good. Its been a hectic week as my pregnant daughter had some major complications which led to the baby making a very rapid arrival at 36 weeks! Thankfully both are now doing well, but I've been looking after my 3 year old granddaughter, which has left me absolutely exhausted beyond belief!
I've had two days rest and today my daughter came around and I had a lovely cuddle with my new Granddaughter and did some chalking on the garden path with my older Granddaughter.
So all in all, not a bad day - apart from the car boot of dirty washing they bought me, as they have no washer at the moment 🤣
Thanks for sharing and asking. Every morning starts badly. Desperate discomfort in joints and muscles so I can hardly dress, always nausea often a bad headache. It sort of eases by mid to late morning, but when I take the dog, I find it ever harder to walk up hills (we live in the Chilterns, so that's pretty unavoidable). Breathlessness is the worst aspect, but also the discomfort in my legs.
As long as I sit down when we get back I pick up a bit, but by mid afternoon I just want to sleep. In the evenings the pains in the joints get worse but to be honest it is the mental issues that are the worst. I forget so much, and often - but not always - exist in a sort of state of confusion and murkiness. It makes me anxious, because I'm trying to hold on to what I need to do, fearful of forgetting it. I've started laying out dinner stuff earlier and earlier, because I can remember it up until early afternoon. I make lists but forget to check them.
Still, two good bits of news. I have my cardiology appointment soon - May I think (would need to check) and they'll tell me whether my palpitations are down to PA, or my heart. If the first then I'm hoping that means they are not the dangerous sort. My cardiologist was the one who first identified - last year - that I might be suffering from PA, so I have some faith in him.
Then I've persuaded the GP to get me to speak to a specialist. Gastroenterology, so the closest they can find. It's not guaranteed the hospital will see me, or that the doctor will know about the condition, but at least it's a step. What I want to know is whether the memory and brain fog problems will get better with more B12. GP says probably not, as I have 'other' conditions, but he's not sure. I'm trusting that the B12 will improve the physical conditions.
I'm sure my story is the same as many other's. But hey hoe, it's nice not to be on your own.
I'm sure that your story is unique to you, but also certain you are not alone.
The reason none of us who have been around for a while would say we're the same and we can tell you exactly what to do next to best help yourself (how I wish I could !) is because one thing is evident to me : we are all different.
If that has not yet occurred to GPs, I would be surprised. Which is why I cannot comprehend the rigidity of the single treatment frequency offered by so many GPs.
What i can say is this:
I have had many symptoms at various times, some horrific, some irritating, some I can laugh about now thankfully. And some long-forgotten.
I never suffered from headaches - although a lot do. I mainly kept my balance although I had trouble walking sometimes, and only once got foot-drop which I found quite worrying. I now understand how lucky I was there.
I first went to the GP in early 2015 with lower back and left-side hip pain, fatigue and daily diarrhoea. Perhaps I had other symptoms then, but none that I connected with these. I'd never even heard of B12 then. I'd had angular cheilitis for maybe a decade and done nothing about it. I didn't go to the surgery often.
I'm not sure that I would have gone to the GP even then, but I had realised that it was not at all normal to have to hold onto the bus-stop sign in the mornings, on my way to work, because I was unable to stand up straight without pain. Getting through each day, getting home again after as quick as possible - all I could think about. I couldn't stand, couldn't concentrate, couldn't remember; couldn't cope. I was sleeping a lot and getting into arguments with strangers: in shops, on the tube. Everything too noisy and invasive. A lot of this I believed was overwork and age-related (I was in my mid to late 50s then).
I remember leg pain and stiff painful feet in the mornings especially, and crying as I walked back up the hill with shopping bags, thinking "Why is this so hard, and taking so long ?" I felt as if I was drifting, would lose hours....
I was also losing knowledge. Difficulty reading as comprehension impaired as well as memory. I did not always understand what people were telling me, couldn't read even familiar faces, couldn't always follow a plot or storyline on TV. Could only do one thing at a time, start to finish, without interruption. So I stopped socialising, reading, watching TV. I wasn't able to work at all after a while.
Heart : I had a thumping heart sometimes, but just thought it to be B12 deficiency. I was told that I had sinus bradycardia - a slow heartbeat - when I had a pre-op check as I'd broken my shoulder and it needed a procedure. I'd broken the other one ten years earlier and had to have that pinned. The thumping heart got more thumpy more frequently and started to be every day and waking me up at night, heart racing. A 24hr monitor revealed 4,000 episodes - nothing serious, nothing that needed a consultant even. My GP told me I had ventricular ectopics - an unnerving but harmless condition that starts for unknown reasons and can just go away without treatment. The only treatment offered was Bisoprolol - which I declined. The condition went away after a few months, reverting back to the occasional blip, which I can cope with.
Almost every symptom has improved. I had continued to get worse after starting B12 treatment (6 loading injections, then an injection every 3 months just like most people). My GP was concerned and ordered further tests - my B12 was sky-high, but my methylmalonic acid (MMA) was raised. Having already ruled out renal problems, my GP diagnosed functional B12 deficiency - where the B12 is not able to get to cell/tissue in sufficient amount - and this was confirmed by the testing laboratory. The treatment was then increased to 2 injections a week, and finally this is when I started to improve.
I still have symptoms return - by and large, this is a controlled condition now -there is not a cure. It took a long while to control even with frequent B12 injections - this included getting my MMA down to within range which took 3 years, addressing my low-range folate and ferritin which took 2 years with monitoring and supplementing when erratic, and gradual improvement of osteoporosis of the spine by having vitamin D and Raloxifene on prescription -which probably also took 3 years to get down to osteopenia.
I self inject now, with three injection-free days between jabs and am unable to reduce the frequency further without a return of symptoms. Sometimes, I deplete quicker: post-covid I needed to up the frequency a bit for a few weeks. Perhaps,having been ill recently, I should have realised that leaving it an extra day was asking for trouble.
You can get a lot of improvements, I'm sure of it, given the right treatment for you. Let us know what the cardiologist and gastroenterologist say. Ruling out all else can be a long and frustrating process - but this won't change until GPs get how awful B12 deficiency can be. Just treat it all as one more potential problem crossed off the list, one step nearer to proper help, and don't get disheartened. Have someone with you if you are concerned about cognitive or memory issues holding you back. Consultant appointments mean long waits, time-limited and difficult to get another opportunity - especially face-to-face !
I’m sorry to hear that you aren’t doing well Cherylclaire. The face pain and sneezing must be quite unpleasant. Today I had an appointment with a nurse who taught me how to self inject subcutaneously. I was pretty nervous about getting the needle in (psychological barrier) but I finally was able to get it in by inserting it in slowly. I’m pretty skinny and small so the needle hurt more. My doctor decided to order insulin needles so those should hurt much less. I feel more confident about administering the injections now and I’ll give myself another dose on friday (so every other day injection) and I’ll rotate spots so I don’t get scar tissue. Here’s to hoping I start feeling better. My fatigue is the worst it’s ever been but I’m pushing through it in the mean time.
Like everything, if you wait long enough, it changes again ... today feels not so bad, just for the telling of it (or maybe in part, the Pascoe yesterday !) - still a relief to talk to people who know what this is really like. Just too many busy days the week before - always seems a payback involved.
Glad you had a nurse who was thinking of you and your needs, what you need to learn from her to avoid pain - it can't be easy the first time they do it, so they can imagine what it must be like the first time you do it yourself. Daunting.
EOD is what I started with when self injecting. Really only possible to do every other day yourself, given that surgeries are closed at weekends, despite this being the recommended starting point for those with neurological problems. Try not to think about reduction later on or put a deadline on this, just concentrate on getting back all you possibly can - and don't be disappointed if it is not immediate, it may take time and you will need to be persistant. This last piece of advice was given to me by a very lovely senior ENT consultant. He was absolutely right.
Wishing you the very best of luck. You know where to find us if you need to talk !
Sore throat, glands up, plus teeth/jaw/face pain (sinuses ?) - yes, exactly ! Thought I was over it, but a day late with Pascoe just a bridge too far !
Impatient with myself - how can I still be guaging this wrongly, seven years in ? So hard to plan anything. What do I want to do this weekend ? How can I say yet ?
Today a better one, despite rain. Went shopping - didn't walk anywhere though. Too wet and cold. This time last year, I was getting ready to go to Guernsey very early the next day. Ah, well....
If I clean my teeth and none of them wiggle or bleed, if I wash my hair and it doesn't come out like cobwebs in my hand, and if I can stand up long enough to dry myself and brush my hair - I'm still doing okay and no mirror required !
(That way I can kid myself that I'm blonde, 40ish and 5ft 10")
I have come a long long way - which makes the occasional "blip" that much more disappointing - an occasional reminder that this never really goes away.
At the time, the fear is always "Is it coming back ? Am I going "back there" ?"
Luckily, the answer is "NO".
In this particular case, I probably should have had a bit extra, coming out of illness, as I have done in the past, instead of putting off the injection because I felt too ill to bother with it.
Given the right frequency of B12 for your condition, given the monitoring of other potential problems: low ferritin, low folate, low vitamin D, thyroid problems etc , healthy eating and sleeping patterns, you can get this under your control.
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