As recently diagnosed earlier this year after going to the docs feeling exhausted heavy legs brain fog and tinnitus I haven’t been able to exercise as I used to for nearly two years.
As someone who used to run 2/3 times a week and teach/ practice yoga I’m finding incredibly frustrating mentally and physically.
Just a weekend away last week with some long walks had me laid out for a full day with extreme fatigue again.
I have 10 weekly injections which seem to improve all but the tinnitus. How do people keep fit? Really hard to understand what I can can’t do and I work ft so sometimes that tires me out.
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WYLass
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Hi WYLass, I sympathise with you !!! It took a long time for me to be diagnosed with vit b12 defence, ?? Pernicious anaemia. I just kept pushing myself to exercise then I would end up exhausted and miserable. Now I accept I can't do what I used to and try to focus on what I can without beating myself up!!! Like you I do yoga and it has been my saving grace. It helps me physically and mentally. Take care and I wish you well.
It has taken me many years to get to the point where I could start to take some longer walks.
I was left untreated for years and I suspect some sort of mitochondrial dysfunction as well as B12 issues.
Running is beyond me but what I really miss is dancing although I can manage a quick bop around the lounge to some rock music on a better day.
I do feel very lucky that I have recovered to the point of being able to walk several miles after years of spending most of my time on the sofa.
There are other threads on the forum about exercise so may be worth searching forum posts.
Have you considered whether you are getting enough B12?
Have you got recent results for folate, ferritin or other iron tests, full blood count (FBC) and Vitamin D? May be worth checking to see if you have any other deficiencies.
Some forum members resort to self treatment.
Getting B12 injections every 10 weeks from NHS in the UK is an achievement as some UK forum members are restricted to 4 injections every year.
When you first started treatment, how many loading injections did you get?
If you didn't get the recommended level of loading injections at start of treatment, maybe you can persuade GP to start a second set of loading injections.
Each CCG/Health Board is likely to have its own local guidelines on management of B12 deficiency. May be worth you tracking down the local B12 guidelines for your CCG/Health Board.
If your B12 deficiency is due to an auto immune condition eg PA (Pernicious Anaemia), Coeliac disease etc then there is an increased chance of developing other auto immune conditions.
Forum members on here often report thyroid issues as well as PA/B12 deficiency.
May be worth putting any thyroid results you have on Thyroid UK forum on HU.
In UK, GPs often only order TSH test, there are other thyroid tests they or a specialist can order.
Links to other threads where I left detailed replies with lots of B12 info eg symptoms and causes, B12 books, more B12 websites, articles, UK B12 documents etc
If the WY in your screen name stands for West Yorkshire, you might be interested in link below to a thread which mentions B12 deficiency guidelines in Yorkshire
I tend to listen to my body…. But there are days when I have to push myself a little bit more than I would like. I exercise during the good days, usually for 4-6 weeks after my injection. Then take a week off leading up to my injection. I find it impossible to keep up a cardio routine though so focus mainly on strength Training. I managed to get my GP to give me injections every 8 weeks , which has helped, but the last week or so is still a struggle.
I hope you manage to find a routine that suits you.
I've never been a runner.However i used yo cycle alot and walk at speed alot.
Dance and play with children. Lift them and equipment.
Work long hours on maternity. run busy clinics ect
All until about 5 years ago
I can't do any if the above at present.
I csn however walk again snd built up to one Mile.
I am strong willed . Every time I've tried to push through its made me ill.
One day to recover is in my opinion is doing very well after you have managed a long walk.
I'm trying after 3 years to look forward rather than back and accept what I can and can't do.
Tricky and I'm finding it frustrating.
Not so good at compromise.
But actually feeling grateful I'm functioning a bit better evan if it's at 🐌 pace.
Expectations ftom friends used to 'the old me' have to think oc different ways to spend our time together
I can't really walk and talk yet 😕 or stand on the spot.
Really can't lift anything??
Take care and trust you are not alone with this .
Hi, I run 5-10km every day and cool down with yoga. I couldn't do this on a 10 weekly injection regime however and found that self injecting once a week allows me to continue running, which I love and is essential to my health as I also have diabetes, high blood pressure and cholesterol and SIBO/IBS. I could barely get out of bed five years ago when I was first diagnosed and literally had to grit my teeth to do simple tasks such as wash the dishes. It took a while to get where I am and your diagnosis is quite recent. I also make sure to take Vit. D and I'm on prescribed Folic Acid. Wish you well ❤️
Until I injured my knee I was running 3/4 times a week and recently completed my first marathon. I self inject every week. My GP prescribes injections every 8 weeks so I get extra from German pharmacies, which there is a huge amount of information about on here. We’re all different but I’m sure you can find a regimen that works for you.
I don’t know what will work for you but maybe my story will give you some hope. I was diagnosed with PA 16 years ago then with recurring iron deficiency anaemia 4 years ago. 5 years ago I couldn’t walk more than 400m or stay awake for more than 4 hours, I had been an amateur competitive runner, had a responsible and busy job and young family. I was having panic attacks in social situations. I hated being that person that had to nap before and after doing anything. During a conversation with a health care professional 3 years ago I had a light bulb moment that I was not going to get any constructive help there so I started making a list of symptoms, treatments and how I felt daily which eventually became a complex colourful spreadsheet. I read here and researched everything I could find and introduced different vitamin supplements and more regular self injection, I noted what helped and what didn’t, I added notes about external factors like extreme heat and stress which affected my b12, time of day I function best etc, I took copies of every blood test and tracked them in my spreadsheet against how I felt and what I could do. And most importantly I learned to be kind to myself. I started introducing yoga, then swimming in the last couple of years and even a stationary bike during lockdown. I set myself small targets but I never beat myself up on the days I just can’t. Last Saturday I lay on the couch and watched Christmas movies 😱 all day. On Wednesday this week I ran 4K for the first time in a decade.
I feel your frustration. I started injections a few weeks ago with both with a doc and also my own additional jabs because the prescribed dosage just isn't enough. I am just now feeling like I can start going for walks in the nearby forest after months of being almost bedridden. I used to be an avid hiker and occasional runner - but my balance and energy just failed me. It took years to find a doc who would run the right tests and I show mitochondrial dysfunction in addition to all the deficiencies. Still in the process of figuring out the cause. I follow a wonderful young woman on IG - @movement_with_me - she is a certified trainer with long COVID. She shows wonderful movements that can help keep up strength - even if you can't get out of bed! It.s very hard, but I am trying to accept that this will take time and there will be ups and downs. Wishing you well.
Of course - ATP intracellular blood test. I also came in low in Tryptophan i.S./EDTA-Pl., vit D, & manganese, folate, most B vitamins, esp 12. And high in Arsenic! 😳 I understand it’s because my body hasn’t been properly filtering the (probably) organic arsenic that we naturally ingest.
Hi WYLass ..... rather than suggest what you should do, here is a brief summary of my own experience with PA.
Now aged 66, I have been active in sport my whole life. My PA diagnosis was confirmed about 18 months ago following several visits to my doctor in response to extreme and very 'unusual' fatigue. Deep down, I just knew something was wrong with my body. He first tried oral B12, it didn't work. Then, over the course of a year, through a process of trial and error, he put me on B12 injections ... staring monthly, then weekly, then every 3 days. That helped to some degree, but I still had the constant residual fatigue. At my insistence, about 4 months ago, he agreed that I should try daily doses. That was the turning point for me. That was the first time I felt any significant improvement. Now I exercise-walk about 4 mornings per week, do gym/cardio on the other days, play golf once per week and do Sunday hikes. I'm in good shape and feeling fitter than I have for several years. I should also mention that I am working full 8-hour days in my own business and the brain is working well
As I said at the start, this is just my experience. So, it might not work for you.
But increasing your dosage might be worth trying.
The main thing is to stay positive and keep going. Keep working to find your own solution.
Thanks for the comments and sharing your experiences. I also have prescribed folic acid but only was given vit D at the start. I will add this and see if makes a difference. From reading it seems I need more regular injections but I’m not sure how the suggestion will go. I will take the West Yorkshire guidance with me when I ask! Thank you
I hate being less active as it also helps my mental health as I work from home mostly and feel like a sack of spuds… some days I know I can’t do even a 20min walk to the shops. So keeping a diary will help - great suggestion! The tinnitus and intermittent underwater feeling drives me mad. Hoping higher dosages will help. I definitely feel a dip 3-4 wks after the injection so will mention that too.
Good luck to everyone in their journey with this xx
I too have hearing issues. Occasional tinnitus & a steady loss of hearing. I saw an ENT for this and a chronic cough. She insisted flatly that there was no B12 connection and tried to scope me for reflux. I knew she was uninformed & stopped the procedure (politely) & left. I started b12 injections the next day & w/in 24 hours my chronic cough stopped. The tinnitus is fading & it seems my left ear is clearing a bit. 🤞🏼 I know this is all nerve damage related. I am still exhausted, but with the addition of D3 drops I am also starting to get some gradual relief from muscle & joint pain. I am taking B12 injections 1 mg every other day. 1/2 are prescribed- the others I ordered. All self-administered. Wishing you some relief. It does seem to take time.
Depending where you are in WY - I've just had a bit of a breakthrough with one of the GP's in HD7 area. Because of the degree of symptoms they have agreed to 4 weekly injections - but started weekly self injecting about a month ago and I am improving. I took the checklists off this website and downloaded some of the medical information as well. This organisation is a life saver.
Might also be worth having a few quotes from BNF hydroxycobalamin link and BSH Cobalamin and Folate Guidelines and NICE CKS B12 deficiency and Folate deficiency link.
"The tinnitus and intermittent underwater feeling drives me mad. "
To give you some hope for the future, the high pitched tinnitus I had disappeared eventually.
When it starts to come back, I know I need more B12.
I also had a metallic noise type tinnitus which disappeared and hasn't returned and pulsatile tinnitus which is still there but much fainter than it used to be.
As you mentioned symptoms that are neurological, has your GP referred you to
1) a neurologist?
2) a haematologist?
Link below mentions when patients with B12 deficiency and/or folate deficiency should be referred to a haematologist and a gastro enterologist. Strangely neurologists are not included.
If GP won't refer you to a haematologist then you could try asking them to write to a local haematologist for advice on how to treat you.
Be aware that seeing a specialist doctor is no guarantee of better treatment as some are not as well informed about PA and B12 deficiency as they should be.
Some health professionals have misconceptions about B12 deficiency and I suggest being prepared in case you meet one of these. Some people on forum have had unhelpful comments from GPs and practice nurses and specialist doctors.
Thank you that’s really really helpful xx I will update x never been referred to neuro which is strange and I have had clumsy episodes and broken toes before diagnosis. I also struggle finding words and concentration wen levels are low. Can’t work read or watch tv wen struggling. I will explore this I have had a dairy allergy for the last 14 yrs and they think the gastro is pa linked but colonoscopy shows clear- now waiting for gastro clinic to chat more. Always had rosea skin ( like my mum) which has cleared up since injections but I thought was the dairy issue? Maybe all linked xx so much to take in!! I wish there were pa specialists who could look at the whole picture we have rather than exploring single symptoms that may me linked xx thanks again for the info
So true WYlass, PA specialists would be wonderful. It does seem from reading posts on the forum that symptoms are looked at in isolation.While we all try to make sense of why we feel so unwell.
I am humbled by everyone's strength in dealing not only with feeling awful, often with no diagnosis but often being written off by health professionals.
BNF hydroxycobalamin link in other reply indicates that patients with neuro symptoms should have a B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months.
There is no set time limit as to how long the every other day loading injections can continue for if neuro symptoms present. Could be weeks even months. If improvement continues so should the every other day injections.
GP can find this treatment info in their BNF book Chapter 9 Section 1.2 or in online BNF.
Did you have at least several weeks of every other day injections when you started treatment?
Currently you mention you are getting injections every 10 weeks. If you have neuro symptoms, I would expect you to be having maintenance injections roughly every 8-9 weeks ( every 2 months)
Vital to get adequate treatment as untreated or under treated B12 deficiency can increase the risk of permanent neurological damage including damage to the spinal cord.
Each CCG/Health board in UK is likely to have its own local B12 deficiency guidelines. Worth comparing local guidelines with BNF, BSH and NICE CKS links.
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
Some on forum resort to treating themselves if NHS level of treatment is not enough for them.
Symptoms Diary
May be helpful to keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received. It could be useful evidence of improvement or deterioration in symptoms to show GP/specialists and could help GP to decide whether or not you need injections more often.
Your post has reminded me of how I felt when I was first diagnosed with PA.
At the time I was personal trainer, had four children living at home (three of whom were teenagers) but until then I’d been managing to exercise and also cycle regularly at the weekend.
Over the space of a couple of months I became permanently tired, my day was over and I got in from work and my cycling became really poor.
My GP offered injections every two months but I didn’t feel any different on this regime. He then allowed a monthly prescription which improved matters for a week at two before my energy levels tailed off again.
I started self injecting weekly I began to feel like my old self again. I was able to take up cycling again and fitness stuff the gym. However, I still had ups and downs and in the end I settle down twice weekly injection regime.
Whilst it helps that my children have grown up and that I’m now retired, my cycling and other fitness stuff is as good as it ever was in the past. In fact, if anything it’s better!
I don’t think I’ll ever be the last one to leave a party (should such things ever restart again) nor will I be full of energy in the evenings. However, what a joy it is to be able to enjoy the fitness side of life.
Based on my experience, my advice would be to find the injection regime that allows you to live your life again.
Build your fitness up slowly, small steps at a time as doing too much to soon used to lead me to taking two steps back.
It took me about 18 months to 2 years to find the right injection regime for me and to be able to begin to start getting back to my normal life in fitness.
I wish you luck and hope but you can move forward from where you are right now.
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