Hi. Just found this site. I got diagnosed almost 2 years ago. i take injections at home every 3-4 weeks. I have been feeling pretty good but lately as i have been trying to get back into running and yoga, i feel terrible. My body punishes me after a easy 20 minute run/walk. Usually i feel this when i get close to my injection date. But now, i feel this days after my injection.
I'm wondering if anyone has had similar issues and if so, where you able to find a way to exercise without your life shutting down afterwards?
thanks in advance for your help
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naolynam
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I worry about how to keep fit too and might discuss this with GP next time I see them. I think I might manage to swim a bit if I could find a really warm pool (I'm a wimp about feeling cold these days) or possibly a bit of cycling on the flat if it's a really warm day.
Trying to do housework takes most of my energy. If I know ahead that my day is going to be more energetic than usual, I take extra B12 sublinguals.
Hi, I have recently read that if you exercise your body needs more b12, so recently I have been giving myself b12 2-3 times per week, it seems to be helping me so it might be worth a try. I take a vitamin b complex on those days 2. i have never done as much exercise as I do now (at least 2hrs per day) and I feel so much better for it, so don't give up. I used to sleep every time I sat down, so has taken a year or two of b12 injections to get where I am now.
Hi naolynam personally during the 45 years I've had P.A. I never "exercised" simply because I hadn't enough energy. The only "instruction" my surgeon gave me after the removal of two-thirds of my stomach due to a burst peptic ulcer at the age of 17 in 1959 was "you will have to get a sedentary job" - I was an apprentice at the time.
Of course I ignored his advice and qualified as an electrician and it was all down hill after that. I was so ill during 1968 that I was signed off long term sick because I was unable to carry out my "trade", was assessed for alternative employment sent on a Government sponsored accountancy course, got registered as disabled and started a "sedentary job" as book-keeper for a multinational firm in my home town in 1970.
However my health (and energy level) declined further until I eventually got the P.A. Diagnosis in 1972 by which time I was a flaked out "Zombie" and I was put on cyanocobamalin 1000mcg evry four weeks.
When I was diagnosed with Type 2 Diabetes a couple of years ago I almost laughed out loud when I was told that I must exercise - something I had been "strenuously avoiding" for 40 odd years but this time I took on board the advice and bought myself a mini electrically assisted exercise bike on which I do twenty minutes a day sat in my armchair which is just about enough for me now as "clivealive" at 75.
I admire your wanting to get back to your previous level of fitness but please first learn the limitations that P.A. imposes on your body and enjoy what you can do rather than worry about what you wish you could do.
To be honest, I never really considered the limitations. I have beed doing okay with the shots but recently have been feeling awful. thanks for dose of reality.
I exercise daily cardio and weights at least 1.5-2 hours. I also self inject weekly sometimes more. I can tell i need injestion because my mood changes or i get the "sighs" during cardio and its hatd to breathe deeply. Hang in there it gets better. I went from 23 hours a day in the bed to back to a relatively normal life. You may need more frequent inhections due to exercise and hyper metabolism of the B12.
How long did it take you to go from 23 hours a day in bed to exercising again? I'm too in the same boat of not being able to exercise. I was just diagnosed 3 weeks ago and can only walk about 20 minutes and it has to be at night when it's cool outside and not bright for my eyes. I really hope some day I can be normal and enjoy the gym or playing volleyball again.
I was exercising the whole time I was sick. I would have to stop during cardio to catch my breath. Gasping for air. This was before my diagnosis. My PA was discovered on routine physical, after many misdiagnosis of Fibromyalgia, Chronic Fatigue, parkinson's, all of which i rejected as answers. My doc went back to beginning an found i had abnormal EKG, then echocardio showed enlarged heart and murmur. So I never stopped exercising. I pushed throught the weakness and fatigue. Once i started injections i had more time out of the bed and more strength and stamina. It was my mental state that has improved the most. Give yourself at least 6 months to start to feel better. Do what you can do and stay positive. You will be able to do more and more mor. I am four years into treatment and i feel excellent. Physically i feel better than ever. i exercise daily at least 1.5 hours. No "sighs" or weakness. The main thing for me is they way I feel psychologically. That was the worst part of the PA. I was hopeless and in despair, now i am at the other end. Optimistic and able to keep myself in a good place mentally. I hooe this is helpful. Just know that every day gets a little better.
Thanks for mentioning the mental aspect of this. I have so much despair and depression and don't know how to get through this. I'm glad to hear that this improves over time. I need something to be hopeful for. I would be able to handle the physical part if the mental part wasn't so difficult. Thanks for sharing your experience ljmulledy.
The mental aspect was thevworst part of PA. The despair i felt was immeasurable. I hoped i would die in my sleep. I was there in the bed gor months, an empty shell. Void of anything hopeful. I had to decide to get out of the bed and make a plan. I looked for things to appreciate, be grateful for. I spent 20 minutes each morning keeping a gratitude journal. I also meditated and listened to positive recordings. I can't believe I made it here, now. I am a different person personality wise. But i am happier.
I have tears rolling down right now.... I have said the same thing. I had wished I had died. And I spent 3 months bedridden and now I am up and about, but I have to push myself every minute of everyday. I do have glimpses of normalcy but its not often enough yet.. I can't wait until the day that I can say that I am happy again and have energy to live. I used to be a very happy and energetic person. I don't even go on facebook to see what my friends are doing because it hurts to see that they are all carrying on with life while I am struggling just to get up, go to the grocery store, get my kids to school and do laundry and try to eat......and not cry too much!
I listen to abraham hicks, eckart tolle, wayne dyer, deepak chopra. These helped me change my thought patterns so i could control my thinking and move forward. I still listen everyday. Its an integral part of my life. Also, I don't do anything i don't like. Takibg care of thr way i feel has become my number on priority. I spend a lot of time on my own. If you have grocery delivery service, order online and have it delivered. It does get better, but it also takes conscious effort to pull yourself out. Take it hour by hour, then day by day. You will see the light of better days.
Can you do more injections at home to make up for the extra b12 your using. Ortho you would still need to pace yourself. I don't think anything can really replace what an injection can do.
Sometimes, I inject more than once a week. I know by my moods that i need a shot. I start to get negative and apathetic about things & thats my mental cue that i need a shot. Sometimes I will get the "sighs" and that's my physical cue.
I know how you feel. I used to be able to walk for miles and miles, carrying binoculars, telescope, tripod and a camera with a big lens. Within a year I'd got so bad with B12d and iron deficiency that I had to sit down after walking 50 m from the car to the supermarket.
I've slowly improved so that I now walk at least 20 km a week with the dogs (nothing like those pleading brown eyes to make you get up and go out) and even managed the anti-Brexit march in London last weekend (you may not have heard about it as the BBC didn't think it worth covering 150,000 people marching on Parliament).
The key was - little and often. I started taking the dogs just to the end of the road and back (about 500 m total). Then I joined the local swimming pool and did that 2 or 3 times a week during the summer.
The swimming was excellent. I could stop for a rest whenever I felt the need. The car was never more than 50 m away. I couldn't fall over while in the water, so the ataxia wasn't a problem (it does rule out running and cycling - annoying after having spent £800 on a new bike!).
I did need weekly injections (with the odd mid-week boost if I knew I was going to be doing something excessive) before I could manage even this little bit.
btw-Didnt get the march coverage over here in Canada. good on you!
I seem to have the same situation. As I felt better after s.i for several months I started walking more and bought an exercise bike. I felt OK between injections,mwhich I'd stretched to about 2 and a half weeks. Last few days I've felt awful, tired, aching, constant headache.
I've decided some of this is the pollen season starting. I stupidly walked my dogs through trees yesterday before I realised there's so much tree pollen around.
Think I might increase b12 for the next few weeks and make sure I take my folate and iron.
I think recovery from long term b12 def goes in steps ( with some backward ones) and not a smooth curve.
Had a wonderful long but gentle walk around the salt marsh last evening. Had been feeling exhausted and dizzy after stressful week and was tempted to cancel. Glad I didn't - the combination of good company, fresh air, birds, nature and light worked it's magic as usual. Much refreshed in body and spirit today and, strangely, with only one shot of B12 spray🤔
This delayed reponse is called Post Exertional Malaise - it may go beyond anemia. Look up Pacing, if you haven't heard of it. Exceeding your body's ability can create long-term problems.
I was diagnosed with PA two and a half years ago...after loading doses I've had injections every 4 wks ever since. I couldn't exercise as I suffered from confusion, chronic fatigue, shortness of breath, aching joints, loss of balance, painful burning feet along with plantar fasciitis the list goes on. Then my doc discovered I also had a vitamin D deficiency,...since I started taking vit D And folic acid a year ago ( i read on here folic acid helps) I have seen a huge improvement over time to the point I've been able to start attending Body balance classes twice a week since December ( it's a mixture of tai chi yoga and Pilates) It's helping to strengthen my muscles improving my breathing, balance and energy levels. Previously I suffered from Achilles tendinitis and numerous strains and injuries seemingly for no apparent reason. It's been a year now since the last episode were I was unable to get out of bed due to exhaustion...so hopefully there is light at the end of the tunnel, you just have to find out what works best for you. I did feel worse when I first started my injections and it was quite sometime before I realised I was gradually starting to feel less pain less fatigue and not as batty as usual! I am even managing some overtime in work now so fingers crossed. I've not had to take any sick leave since the end of June last year. 😉
I have my b12 injection every 4 wks, have done for 2yrs now, I take vit d3 tabs plus folic acid tabs.
I'm now realise how lucky I am to have 4 wkly injections after reading about the problems people have faced trying to get help from their GP, mine has been very helpful and understanding which makes such a huge difference! 😃
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