Hi, and thank you for the wonderful resource! I am 45, and my B12 deficiency was first identified in June 2019, after I had been suffering for at least 3-4 years from the effects. I understand my levels were quite low (110, where I was told that here in Canada the cut-off is 220), but I received only 4 initial injections - one per week. My symptoms did improve dramatically after those first shots (symptoms which included everything from heart palpitations and breathlessness to visual disturbances, depression, exhaustion, aching/burning/prickling feet and lower legs, and (near the end) the inability to remember such basic facts as my date of birth. After 6 months of monthly injections, my levels were tested, and I was told that my levels were normal, and I was refused any further treatments, even though the peripheral neuropathy returned, along with brain fog, and other debilitating symptoms. I continued to push for further treatments until my physician finally agreed to refer me to a haematologist, who eventually diagnosed me with pernicious anemia. In the interim, I went for six months without an injection, and I still feel like I haven't recovered completely. I now have a better physician, and a nurse who is advocating for me to receive more frequent injections. In Canada, the standard is one monthly injection, and for that I am grateful. My heart goes out to all of you who are forced to struggle through three months at a time. That was a really long-winded intro to my question (*sorry*)! Having read about pernicious anemia, and its physiological effects, I'm really anxious about damage to my heart and nervous system; How do I know if it's safe for me to return to exercising (assuming I have the energy for it)? I used to be a runner, and I love to cross-country ski, but I'm nervous about taking it up again in earnest, since I had such terrible heart palpitations, and still have the deep sighs about 2-3 weeks after an injection. Thank you again to all of you who contribute to this group - your questions made me feel like I was not alone in the world, and the answers have offered much needed clarity and strength! Take care, and be well.
Safe to exercise with pernicious anemia? - Pernicious Anaemi...
Safe to exercise with pernicious anemia?
Hi Maksmomma. I’m sure many others here are more experienced than me with the complex nature of this condition. Like you I’ve been a runner, and I also lift heavy things. For the running, I had started getting back into it by experimenting with using the MAF technique (Dr Phil Mafetone). It’s where you run (or shuffle!) at a structured heart rate. It improves one’s cardiovascular function. It had me shuffling more than running a lot at times, but it was a joy to be moving. And the days when I could string together reasonable stretches without raising my heart rate very high we’re big wins. Now I’m actually back to doing sprint training! And my heart rate has altered dramatically too. I’d have never thought it possible. It has been a slow journey, and that was a hard mental game, but I knew it was worth persevering with the experiment.
Thank you for sharing! It’s inspiring to hear that you’ve managed that kind of progress. It makes me feel more hopeful about resuming some level of activity beyond the walking that I do now. I’ve never heard of the MAF technique, but I’ll definitely look it up. Thanks again, and take care.
There really should not be a “standard treatment “ for Pernicious Anaemia, because everyone is different and needs a different regularity of injections . I need a weekly injection of Hydrocobalamin to keep well . I can’t get that here in the U.K. , so I have to self-inject . Even so I’m left with burning hot feet after 5years of injecting( they are not hot to the touch . I just have the sensation) Some symptoms are irreversible if treatment is delayed or insufficient. If I were you, I would try to get more regular injections ,even one every other day, until you get no improvement in those symptoms . It’s good to know that one can’t overdose on vitamin B12 , unlike some vitamins . That’s what I would do in your shoes . , before embarking on any return to exercising . Maybe you will have to consider self-injection . It is easy to get B12 for injection in Canada , as you probably know . If you like , I can send you information on that .
In the meantime , very best wishes .
Hi, and thank you for your suggestions, and offer of help. I’m so sorry to hear about your ongoing struggles and lasting pain. I have an appointment scheduled for March with a neurologist to check my nerve conduction because I have ongoing symptoms in my feet ranging from a kind of buzzing/tinging/prickling to aching/burning. My nurse was actually going to give my husband a tutorial, so that he could do the injections for me, but we were foiled by rising Covid case numbers - I’m actually fortunate that she hasn’t yet been redeployed. I know that generally I start to feel a return of symptoms after 10-14 days, and by about day 18 I feel quite unwell. After an unsuccessful experiment with sublingual tablets (1000mcg), I have found that mega-dosing with a spray can help bridge the gap for me. My haematologist encouraged me to try mega dosing between injections, so now I’m using a 500mcg spray (methylcobalamin and hydroxocobalamin) about 20 times a day from about day 10 on. It helps to delay the onset of symptoms like brain fog, exhaustion, depression, and the deep sighs, but it is definitely no substitute for an injection. And it’s crazy expensive to be using to megadose - about $30/week. I’m hopeful that by spring I will be able to get in for that tutorial. Thanks again for sharing your insights and take care.
I’ve always done a lot of cycling which all but ground to a halt around the time I was diagnosed with PA. I didn’t have the strength, energy or motivation for it.
Over the first couple of years of injections my injection frequency went from once every 2 months to monthly from my GP. That improved my general energy levels and enabled me to start cycling again but not at any great level.
I started si, initially weekly and then twice weekly and a few years on that’s the frequency I’ve stayed with.
I feel generally fit and well and I’d say I’m cycling as well as any fit healthy 60 year old female. In fact I know I am as I’m often in the top 10 for my age and gender on Strava segments if this is something you’re familiar with.
It probably took me 18 months to 2 years from diagnosis to get to this point. Part of the reason for taking so long was the time it took to get to the right injection frequency and part was that it took that long to slowly recover from ill health, to health and finally to fitness.
I did learn that a slow cautious build up to fitness was very important and there was no point trying to push through my limits as that just led to one step forward but 2 steps back.
My advice would be to start with getting your injection frequency right. Consider how often you need to inject to feel well and without any return of symptoms. My experience is that I need to inject the day before a return of symptoms. If symptoms return before an injection it then takes a few more injections over the next week or 2 to get back to feeling good.
As far as exercise is concerned, start cautiously once you feel well, maybe doing less than you feel you’re capable of. Stay at that level for a few weeks then increase your exercise load by no more than 10% (whether this is time/distance/speed/weight) and if that’s ok stay there for a few more weeks and so on. If you feel exhausted from a session make sure you fully recover before starting again at a lower level.
Good luck!
Hi, and thank you for sharing your experience and insights! It sounds like you’ve made incredible progress! I am definitely still working on accessing the right frequency of injections, but as I wrote in my reply to Wedgwood, I have had success with megadosing methylcobalamin and hydroxocobalamin in spray form, and hope that will carry me through the second wave of Covid until my nurse can instruct my husband in giving me injections. In the meantime, I appreciate your advice on taking it slow - something that is not at all in my nature, which is part of the reason this whole experience has been so difficult for me. It’s been very frustrating to be so unwell, and now to find myself so out of shape! Thanks again for sharing- it’s good to know there’s a road back, even if it’s a long, slow one. Take care.
Taking it slow was not in my nature either. We all find it very frustrating and difficult with this illness .
I'm still on that slow road to recovery but believe I will keep on making improvements.
I've been on my bike but know I csnt actually go far yet I was just thrilled to have the balance to so it.
A bike been transport rather than a hobby .
So feels part of my independence.
Rollercoaster ride . Take care
The regime is different as probably cynocobalamin on Canada which is on a monthly routine. If I were you i would wait for more healing before attempting running. Build up walk then power walk.
I was active. (Not sporty or a runner) but am walking short distance only as I'd I push it really sets me back.
I know we are all different and if you are even thinking of it ,you are in a good place.
I would consider or getting your doctor to have more injections.
Take care
Hi, and thank you for your insights. I am definitely worried about setbacks, and your reply echoes some of the other advice I’m hearing- take it slow, and try to get more injections. Once the Covid numbers come down here, my nurse is going to give my husband a tutorial on injecting me, so I’m hopeful that I should be feeling well enough to increase my exercise levels into the summer. Right now, I’m pretty much just walking - though 18 months ago, I could hardly manage getting out of bed, so I’m grateful to be feeling well enough to even consider adding more exercise. And yes, you are correct - the monthly injections I receive are cyanocobalamin. Thanks again for sharing your thoughts and insights. Take care.
Maksmomma,
I am in Canada and I self-inject. There really is no reason to wait on the tutorial. None. (Edit: Of course, I am not medical professional and you should only do what you feel is safe.)
I had no guidance and have done just fine. And I have self-injected almost since the beginning of diagnosis.
Stop wasting your money, having to budget for the spray. As injecting is way more economical.
As for the exercise, I pushed through. But I paid for it. With a day of too much intensity I would be down for the count for three days. It went on that kind of cycle for months. I simply accepted that was the outcome of my exercise and dealt with it.
Now, just over a year in, I have had a ton of progress. Am I back to where I was? No. Will I be? Hopefully.
It really is a listen to your body necessity in the beginning and deciding what kind of drawbacks you can accept over time, and what you can't.
Best of luck.
Thank you for sharing your experience and suggestions. I am, admittedly, a bit more anxious than I ought to be about self-injecting. However, in my case, the fear is borne out of a very bad experience with an improperly injected vaccine, which resulted in an infection and abscess that took over a year to heal. I understand that the risk of injury or issues with self-injecting cyanocobalamin is probably very, very low, but I've had a hard time getting over my anxiety of injections - even those administered by skilled and experienced professionals- so for now, I'll continue to suck it up and pay the money for the spray, until I can get in to have the tutorial session from the nurse. Having said that, I commend you for taking charge of your health, and listening to your body. Thank you, and take care.
Hi Maksmomma, I agree that getting your frequency right is essential. And doing a little bit at a time, getting fresh air, listening to your body as to what feels supportive, getting enough sleep and all the little things that bring you a smile. In the US I too have had to push to get a referral, and was diagnosed by a hematologist, when my family doctor kept saying nothing was wrong. Rest is so important, too. I was able to get back into exercising once I had my frequency adjusted, but even now, it helps to take it a little bit at a time.
Thank you for your thoughts - you are absolutely right about listening to your body, and getting fresh air. These things do really help, and to be honest, I'm still just so grateful to have the energy to get up and leave the house for a walk! I struggle with the amount of rest that I know I need right now. In my former life, I was that person who never needed more than 5-6 hours of sleep a night - now, I find myself needing at least 7.5-9 hours, and even then, I sometimes fall asleep at my laptop mid-afternoon. You are right, though, it is important to listen to your body, so I will continue to respect my need for rest, and feel grateful for what energy I have to get outside and exercise. Thank you, and take care.
Hi — just adding another voice to this conversation in case it helps to know that you’re not alone!
I was also very active — doing fairly long/intense workouts 6 days a week and always training for half or full marathons kind of active — and I suppose I’m glad that I know, now, why I recently seemed to be getting slower and had so much less energy and motivation for workouts!
After reading about Inez Milholland, the women’s rights activist from the 1930s who famously died from PA after overexertion on the campaign trail, I’ve also been very wary of pushing things “too far.” (Though I think things were dire for Milholland, as there was no cure for PA at the time, and dosing herself with arsenic probably didn’t help.) And, on a lighter note, I’m tired of losing the whole day after a workout to a nap!
So, I’ve been on a complete break since late August for probably the first time in 15 years. I don’t know what kind of activity level it’ll realistic for me to be able to return to given monthly injections (I haven’t tried self-injecting or microdosing — like 80% of my friends are doctors, so it would be frowned upon in my social circle, I think), but I’m trying to appreciate a different kind of lifestyle / fitness in case this is the one I’m stuck with.
Of course, I don’t know how much of this is in my head, and it’s hard to not feel like I’m just being lazy.
I’m sorry that I don’t have any useful answers for you, but — please let me know if you discover any tricks or tips! There are quite a few of us trying to adjust on these boards 
Thank you for sharing your experiences and insights. I think you touched on a couple of really important points. It IS really important to feel that you are not alone, and to know that others understand what you are going through, so thank you again for recognizing that and sharing! It is especially difficult with an illness that is not visible, nor well-known, to explain to others what you are going through. I feel that this really contributes to the other point you made - that you feel lazy. Because I was always such a high-energy, active person - the kind who "got stuff done"- I have really resisted rest, choosing to push hard and dig deep instead, because to do otherwise felt "lazy". After all, my own physician told me it was "normal" for someone my age to feel tired, that "busy moms can get overwhelmed by all of the responsibilities", that "it's natural to feel depressed at this time of life, with all of the transition", and that I really needed to "just learn to 'zoom out'". It's hard not to buy into that idea that somehow you're just imagining how awful you feel, and that you are just giving in to depression and stress by lying in bed. I felt that way until I was finally diagnosed. And even now, sometimes, I feel like I'm making excuses for my own shortcomings. I hope I'll continue to get better at letting myself rest, and not feeling guilty for it, but it does help to hear that I'm not the only one struggling. So thank you. Take care.
Thanks for this validation!
Yes, I feel like I also (kind of?) qualified as an overachiever until recently — until I realized that I’d been dismissing symptoms for months. At least now I’m more aware that there’s a reason for the fatigue, headaches, etc. — that they’re not indicative of personal failures (the way I’d thought they were before). I think it’s complicated, too, because women are often taught to dismiss their own feelings — and Americans are taught that working hard all of the time (being busy, being productive) is one of the highest moral goods.
Wishing you greater ease and less guilt in taking a break when you need it — no matter how long that is. 2020 is the year for “slow living,” after all!
Thank you for bringing up these helpful points. As a woman and a mom, and a driven kind of person, I can relate to the ideas that still-elsewhere shared. It's sometimes hard for people who like to accomplish things, to work and to reach goals, to accept that having PA means that they need to get extra rest and take extra care of their bodies. For me, I just realized recently that by pushing myself too hard, out of guilty thoughts, is actually depleting my energy levels even more, creating a negative spiral. So I am trying to make it a positive spiral: naps, fresh air, positive self-talk, and reminding myself that the best gift we can give others is a healthy and happy self. I cheer you all on and yes, you are definitely not alone!
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