B12 injection refused

[Nackapan]

Saw the Gp last Friday. She didn't mention the b12 test done at same time as folate. In consult said I could have the b12 injections when I need them.( I posted fearing they would be stopped as level so high as post injection.) I've been having them 2 weekly the odd weekly and tried 3 Weekly a couple of times to see if I can last that long. Alsi arms so sore. I was plodding on okay to 16 days then got poorly at the weekend. Woke last night with very busy head (tinitus) and headaches pain and internal shivers. All very odd. Then an awful headache started. Felt foolish trying to go 3 weeks. Dosed myself uo on painkillers to get to the surgery. The regularea nurse could see it unwell. On 'the screen' it said b12 injections now 3 monthly. I staped calm . How I don't know . Probsably the headache pounding and frozen face .I know she couldn't give it. No one informed me. I asked the nurse to see a doctor. Had ti be a different one which I was concerned about as they had refused at the start last year. She was gone ages. She must've been persuasive as I got it. She also made a good appointment for tomorrow also amazing. I hope it's a mistake . I hope this injection turns me around enough by tomorrow to demonstrate.

[JanD236]

I’ve tried several times over the years to stretch out my injections, after all who wants to stick a needle into themselves more often than necessary, but never with a good result. It always puts me back for a week or two at least.

In the summer I upped my injections from weekly to twice a week as I had some big cycling challenges. Felt really great all summer! But now it’s autumn and my cycling mileages have reduced so I thought I’d go back to once a week and take high dose B12 tablets on the other 6 days.

Big mistake! A week last Sunday 30 miles and the Surrey hills between me and home and my energy crashed and I had to be nursed back to a train station to get home. I’m back to twice a week and with 10 days of almost complete rest I went out on my bike today expecting the worst. I felt great!

I won’t make that mistake again! Twice a week is what I need to feel good so twice a week is what I’ll be sticking to from now on.

I haven’t had problems with muscle soreness at the injection site but strictly rotate arms, thighs and buttocks (you need to be wary of the latter but it works fine for me).

[Nackapan in reply to JanD236]

I dream of getting onto my bike. My energy leveks have incteased. It's my head pain that holds me back

I will see if this injection turns me round. Sometimes you have tone learn the hard way to be sure as so little makes sense.

Si glad you've found a regime that works for you.

[JanD236 in reply to Nackapan]

Nackapan it took me a couple of years to recover enough physically and to establish the injection frequency that worked for me to be able to do what I do now. Just aim for small steps forward at a time.

I was prepared for this long time from a previous ‘hit’ by my immune system. I went from running a marathon in a great time (for me) to not being able to run to the end of my road 3 weeks later which was caused by Graves’ disease (overactive thyroid). When I ‘complained’ about my slow recovery the endo said it was as if my body had been running a marathon every day for the 6 months it took to diagnosis and 18 months to 2 years to recover was to be expected.

Mind you I never did have another marathon in me (I suspect the PA immune assault on my stomach started at the same time but it took nearly 10 years for my B12 stores to become critically low). In any case, I’ve never again pushed myself so hard as I feel it was the marathon that was the start of my autoimmune issues.

[Nackapan in reply to JanD236]

Okay. I'm 14 months in so will.have to find more patience.

I'm living in a 2 mile zone. Can walk 1/2 mile on an okayish day. Am in the dark from 1700hrs. Can now make a meal in 3 stages most days. Go into one food shop only which I used to enjoy. Now a challenge. I realise tiny steps are good.

I dont want to do loads. Just to watch little tv. Read a book. Talk on the phone. Go to town for a stroll. Do a food shop without pain. Also to get on a train to visit grown up children.

I am waking up.Amazed how I've kept sane in a darkened room alot. Am trying hard to get on with life. Just thought I would by now be able to do a little more.

Also miss swimming but can say goodbye to load's of things as long as I can function a bit better.

A marathon was never on the agenda. .well done you.

[JanD236 in reply to Nackapan]

You’re moving forward that’s the main thing and have had to draw on all your reserves and use your strength of character to come this far. Well done you!

[Happysmile in reply to JanD236]

@janD236, apart from marathon running etc I was in the same boat with Graves, B12 deficiency, energy levels. My daughter is now Graves too. What treatment did you have for graves out of interest?

[JanD236 in reply to Happysmile]

I had carbimazole for 18 mths - 2 years starting in 2005. Since that time I’ve had no further recurrence of hyper symptoms and needed no further treatment.

[Happysmile in reply to JanD236]

Wow that’s great. Gives me hope for my daughter. I had thyroidectomy. she has 50/50 chance of it going into remission.

[Wagonwheel in reply to JanD236]

JanD236 I just posted a reply to Nackapans other post stating I was going to try to extend weekly to biweekly SI and your reply just reminded me what happened the last time I tried this whilst simultaneously increasing my milage! At that time I too realised that to run/exercise more I do best on biweekly!

I'm 14 months in too Nackapan but most of my symptoms are kept at bay or I can ignore.

I used to suffer with a long term knee injury caused by knee cap not moving in correct alignment due to uneven muscle bulk (quod muscle over large VMO muscle inside knee area underdeveloped), always kept running, long distances as I'm a stubborn git. Had it around 8 years tried osteopathy, therapy, massage etc, didn't work. Have high pain threasehold and just ignored it..

Then my running friend (already a medical researcher) qualified as an acupuncturist. She put needles underneath the knee cap and all around the VMO muscle and attached the needles to an electrical source that sent pulses directly into the wasted VMO muscles and damaged cartilage. The next day the muscles that had been dormant for so many years were tight and sore like they'd done a work out and I've never had any pain or issue since.

Long story, getting to my point, I had about 4 acupuncture sessions in total for the knee, I almost cancelled one as had an awful migraine which I used to occasionally suffer from - needles were inserted into my temples and in other areas where the pressure felt intense it was an instant relief, after 15 mins the migraine had gone completely. I wondered if acupuncture might offer you some relief from some of your symptoms?

[Nackapan in reply to Wagonwheel]

Yes I'm thinking thst. Have a leaflet given to me from one of my grown up children. Occipital neuralgia a possibility gp thinks. I've also a high pain threshold most of the time. Sometimes thst does you no favours

Thanks. Also going to look onto safe neck muscle release. As when you have virtigo you use every neck muscke to try and stay upright.