I’ve had enough of this… I am truly experiencing crippling anxiety to the point where both of my hands cramp and ache because all I’m doing is thinking over and over about how my body is feeling…
The tingling is mind-blowing, the burning tongue is baffling and the tinnitus buzzing is distracting…
I’ve been to the gym the past 2 days and felt good - managed to jog 5km, 15 mins on cross trainer and 15 mins on stationary bike but after 16 months of treatment and 16 months of daily body-scanning to tell myself if I’m good, bad or indifferent today I feel the anxiety has got too much for me…
I’m full of B12 and all of this crap has started since lockdown started 2 years ago - can anyone offer some help, advice and/or guidance on the anxiety please?
The tongue and tingling is the first things I notice when I feel an anxiety phase coming on and it can last most of the day 😢
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Thanks Hidden - I’m no longer taking any folic acid and only taking a sublingual B12 each morning at present, between my 8 weekly injections…
I think that the past 2 years has taken its toll on me - lockdown, heightened stress with the scary stories of the virus every minute of every day, the diagnosis of PA, daily symptoms and a couple of hard hitting bereavements; I’m not ashamed to admit it’s got me - just don’t know what to do and how I can get out of it….
Really appreciate your insight - thank you & I hope you are well on the road to PA recovery 👍🏻
"I think that the past 2 years have taken a toll on me"
Yes I can relate to that, as have many others, one can only take so much. At first when covid hit I watched the news regularly but found it playing on my mind too much, causing unknown fear of everything.
In the end I stopped watching the news and tried to focus my mind on other things.
Bereavements on top would only add to that.
Have you anybody that can support you ?
Give yourself time to relax and try not to beat yourself up about things. We can't change what's going on in the world or the past. Just take precautions when your out and about and you will be fine.
Thanks Hidden - I started a new job in Germany in September and go home to my partner every other week. That’s also not helped as I can’t speak German yet but I must take action now cos the nervousness, mind-racing and physical symptoms is too much..I’m going to see a mental health specialist to see if that helps.
Many P.A. patients are not able to benefit from the sublingual tablets that you take daily between 8 weekly injections . I know that I cannot , I tried them and also nose spray . It sounds as if you need more regular injections , and if your GP will not oblige , then you will need to grasp the nettle / bite the bullet , and start self-injecting . Information on self-injecting obtainable on the forum . It’s easy and cheap . And we know that B12 cannot be overdosed , unlike many other vitamins ,including B9 ( called folic acid in tablet form . B9 taken in food ( folate ) cannot be overdosed . Having read posts on this forum over the past 6 years it has become apparent that we are all so very different and that one size does not fit all . I hear of P.A. patients who need a daily injection , and some who manage on 3 monthly , and any amount in between . I need weekly to keep well .
What has amazed me about your post is the fact that you managed to jog for 5 km ! and excercise on machines .
Thanks wedgewood - I had been self injecting but that was making anxiety worse…A leading professor in B12 deficiency said there was no need for me to do any more than max. Once a month as there’s no peer reviewed papers that demonstrate more is better unfortunately.
For me, it’s the mental health impact that’s the toughest - unsure if it’s related to PA or the whole world for the past 2 years but I’ll certainly try and take control from now on.
Re: jog and exercise - it’s first time in 6 months but I’ve been doing it to prove to myself that I can still be as normal as I were 2 years ago (pre-COVID and diagnosis) 👍🏻
Sorry but that medic has not got the whole story. Everyone has individual needs. One only has to read posts on this forum to realise that there are a very few qualified medics that comprehend the B12/PA situation.You have to take charge of it yourself .It can take time , but so well worth it. Good luck
I’m afraid that I must contradict the “leading professor in B12 deficiency”, because as a diagnosed Pernicious Anaemia patient ( positive Intrinsic Factor Antibody Test ) I know that once a week B12 injection keeps my symptoms at bay , but a monthly does not . And over the 6 years that I have been a member of PAS , and reading daily the posts on this forum , there are many P.A. patients who experience the same . Some need to self -inject more regularly than that to keep symptom free . There is very little research done on B12 deficiency . The medical profession does not show much interest in it. .
I think an issue with some practitioners is that they treat this like a blood disease. They look at the blood and react to the numbers. B12 deficiency and PA are not blood disorders.
Treatment is symptom based, not test result based. The symptoms are felt by you and you alone, so it is you who should be what the treatment is based on.
We all know that reality does not match his assessment.
I remember a very well-respected consultant repeating 'Listen to the patient telling you the diagnosis'. Treat the patient, not simply the numbers. The numbers can be a helpful guide.
[If the numbers aren't helpful, then save us the trouble of doing the analyses! Don't bother sending the sample. We're quite busy enough keeping up or CPD portfolios, paperwork, mandatory training courses etc. Likewise, if the results don't come back in 15 minutes, don't send another one just yet. If you overload the system, further overloading it won't help. Flogging a dead horse never really helped anyone.]
My anxiety turned into full blown panic attacks and fear. I love my me time and an empty house but I went for a couple of months where’s I couldn’t let my husband leave the house. Thinking back on it makes me feel sick to my stomach. It took 3 months for me to feel like myself again and I did start on a half tab of Cipralex. I also did 2 weeks of injections daily and then I went to 3 injections every week. I am. now after 3 years able to do 1-2 injections per week instead of 3. I also make sure to keep my potassium, magnesium and vitamin D in check. Hoping you feel better soon.
Unfortunately some people still suffer symptoms even when having regular injections , I SI once a month and still get a very sore mouth and tongue almost everyday. Sometimes I get a few days relief just after an injection but then its back and yes it can get you down. I find drinking plain cool water helps a little but haven't come up with anything that really helps and neither has my dentist or GP . As for exercise I think most of us take it a day at a time and do what we can when we can without pushing to hard or we tend to take a backward step if we overdo things, I envy what you seem to be able to do at the moment 🤢😂I try and use distraction to help with anxiety, walking if I am able, reading , painting or social history study if I can concentrate, TV and Movies if its such a bad day that I can"t do anything else and of course talking to people as and when I get the chance. Mostly with me its been learning to live with what gets thrown at me on a daily basis I know its not going to go away so I now take it a day at a time I don"t give in easily but now know when to say enough is enough and just rest for a while . Good luck on your journey and all best wishes hope today is a good day for you.
Hello User 2020-1My symptoms are similar to yours but I give myself a jab every other day to keep them at bay. My tongue is swollen and the sensation that runs through it can be intense but it all goes away when you have the right treatment. The only thing that seems to stay with me, is the giddiness. Wish I could see a doctor about it but they don’t seem to be seeing their patients anymore. By the way, I bought a gum shield, the kind that you put in hot water and mould into the shape of your gums and teeth, it really helps me get a good night’s sleep as my teeth are not touching my sore tongue. Hope you get it sorted soon!
Hello, Sublingual did nothing for me and was a total waste of time and money. Simply put, some patients need more frequent injections than others—quoted directly from my primary care physician.
I could not get well on monthly or twice monthly injections. It took long term weekly injections to put me in a state of what I would call full remission of all low B12 related symptoms. We are talking well over a year. Many people feel worse on b12 injections before they feel better. I know I did but what choice did I have but to keep going?
I can only offer my best advice to you based on my personal experience and that would be to increase frequency of injections. My recovery was long and I suffered setbacks because I didn’t have injections frequently enough. I didn’t know about this forum and was in the dark. My mind wasn’t working well enough to realize that all I needed to get better was more frequent injections. Best of luck to you.
Before my PA diagnosis, I had anxiety so bad I couldn't leave my apt. They did the loading doses and then 3 jabs a week. After a few months, the anxiety and agoraphobia stopped. Hope you get more jabs
I had many typical symptoms of B12 deficiency including anxiety which improved greatly when I started self injection. I didn't want to self inject but it was a last resort as NHS refused to treat me.
I could not manage on NHS level of treatment as my symptoms return within a few days of a B12 injection. High dose oral B12 helps a little bit but for me there is no option but to self inject... a couple of weeks after an injection I have pins and needles in my spine and my mental health takes a nose-dive so one every 2 or 3 months wouldn't work for me.
For me taking lmethyl folate daily made all of the difference as it’s not uncommon with the need for b12 to not be able to convert regular folate hence you need it methylated it goes hand in hand with b12, you can buy it cheaply, my symptoms were the similar to yours, I hope this helps
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