Struggle getting up

[Coachlady11]

I’ve been self injecting for about 18 months now

I don’t have a set pattern I just inject when I feel I need it sometimes it’s twice a week sometimes I can go for two weeks but more often than not the pattern is once a week.

My question is does anyone else wake up feeling like they have been drugged - I can struggle to get off some nights and some nights I fall asleep instantly but I never wake up feeling refreshed and I struggle to get out of bed.

I just wondered if anyone else had similar problems x

[pvanderaa]

That is pretty much the state of affairs here as well. I call it the roller coaster ride.

I have found that waiting to take an injection when you feel you need it is too late and you have become depleted. This sets back any nerve repair that may have happened.

The better technique is to set up a regular injection schedule. I’m on weekly cyano injections but because I have vials instead of ampoules, I can split the injection in half and take 0.5 ml on Monday mornings and 0.5 ml on Thursday morning.

This regular dosage along with daily supplements of folic acid, B1, B6, a multivitamin, D3, TMG, as well as methyl sublinguals to fill in have stabilized the ups and down of the roller coaster ride.

The getting out of bed is still hard but maintaining a regular schedule of meals an gentle range of motion exercises has stimulated the nerve repair and eliminated that totally drugged feeling.

Extra sleep seems to make matters worse. Getting up and moving and pacing myself seems to be my best course of action. It’s the exercise and movement that stimulates nerve repair.

Do you keep a logbook and record a daily assessment of all of your symptoms? This helps with monitoring progress because repair of nerve damage is very slow if at all possible and any set back seems to put you back to square one. The logbook helps if you have short term memory loss as well.

As you look back in your logbook, you will notice that some symptoms have just disappeared. You just tend to get on with life as you get better and so you can over do things and feel worse on certain days. This is normal.

You may also see symptoms that show up 3-48 hours after each injection which seem to be getting worse. These are pain, hunger, anxiety and are all due to stronger signals on the repairing nerves. Knowing that these can occur, you can acknowledge them in your logbook and consider them as “good” indicators and stop worrying about them. This eliminates the stress that consumes B12 as well.

[Nackapan in reply to pvanderaa]

Did your light sensitivity you got when starting b12 injections ever go?

[pvanderaa in reply to Nackapan]

No. I still avoid sunlight

[Nackapan]

Yes. I often feel drugged or like a hangover.

I ache alot too. As I'm up on the bed from around 6pm as light sensitive and have to he in a very dim room. Usually very fatigued by that time last night mentally alert but head too sore to stay up. As you say very difficult to describe.

I like you can just fall asleep in a sudden horrid way then wake up with a jolt 2 hours later. Feeling awful then sleep to the early hours and then restless .

I often wake with a headache and never know if I can move or not. Always better for sitting up??

I've not had one morning that I feel okay. I have a disappointed feeling that I dont feel better. Then try and get on with the day . I have 2 weekly b12 injections .

[ACritical]

Becareful with supplements !!!B6 can built up in your body and too much will make you ill. You can pay for private blood test if you can afford and your Gp does not cooperate! Go from there. Deficient in vitamin D can also make you feel terrible. Don’t just mess about with supplements. Manage yourself properly. Make a diary of what you take and why and describing how you feel with taking them, your symptoms, have regular blood tests so you know where you are, try getting the other vitamins and minerals mostly through a healthy diet, so cut out also what adds to making you feel ill(refined sugar, ready made food and drinks with all these additives, (too much) alcohol etc. Help yourself! It does take more effort but will help. Get outside and take a walk of 30 min a day, brisk if you are able to. ( I started with a short walk using a cane)

Vitamine D pills or drops( with Vitamin K2 coming from a good diet) in autumn and winter is unavoidable , research for a good one , the one you can trust it has the correct amount and substance. I believe getting B12 injections is not a miracle cure by itself. However Vitamin B12 is of paramount importance to the vital methylation cycle/ process. It is a life changer, you need to manage this process carefully.

[Nackapan in reply to ACritical]

Yes I agree. I could totally rely on my diet as eat very well. Grow own veg ect. Make things from scratch. Batch cook.

I go by blood tests as before b12 deficiency I assumed I was able to absorb the nutrients I ate. Akests had a dieg rich in b12.

So its working out what isng being absorbed now in enough quantity.

Vitamin d is needed over the winter months

[Showgem]

Yes I have the same problems. Some days I have to make myself get up, although if I can I try to stay just a little longer if I've had a really bad night.

It might be better to have your injections at more regular intervals, say once a week, then every 8 days if you're okay but every 6 days if you're not, until you find out what is best for you.