Hate feeling like this!

[Penni]

I'm so tired all the time but just can't sleep. Every night I wake up having pins and needles all over and 'twitching muscles'. I don't know if anyone else has this issue but as I have no idea when or which muscle is going to twitch I'm finding it hard too cope with. Some of you may find this funny but on Friday afternoon I was trying to remove my boot when my foot started twitching and my boot went flying and hit my poor cat in her butt as she walked into the room. Thankfully she is fine but wouldn't speek to me all weekend. Trying to get in too see my GP is a nightmare and usually means booking a month in advance! Just wondered if anyone here maybe able to help?

[mdoh1918]

Hi penni

Yea I get this.... the twitching and burning feet have literally just started to calm down the last few days. What are you on? Are you injecting b12 and if so what are your cofactors?

[Hidden]

I started with these problems after the 2nd of the 3 monthly top-ups 2 years ago and found i was having to sit with my feet in a bowl of hot water every evening to get some relief from the twitching and burning sensations in my feet. I also found it was dangerous when driving as I had the electric shock type of never pain in my shin which concentrated the mind wonderfully and made pressing the brake pedal a matter of my will over the muscles - that was the determining factor for me Penni and so I had chats with my GP about it as they hadn't even considered neurological factors when they found I was B12 deficient and I was suggesting trying 2 weekly injections to see if they would help. Although the GP had a look at the reading matter on this forum and agreed it may be a good idea would only do so with the haematologists agreement and that twit wanted me to stop injecting completely for 6 months to make sure I had a B12 problem by seeing what levels were then.

I found the 2 weekly injections gave me what I wanted, for about a week, then I had a couple of days of burning and twitching torment followed by another four days of comfort before the burning and twitching returned, not so bad as at the beginning but still a nuisance. As this pattern repeated for the next 3 times, with reductions, I then brought the injection interval down to 7 days as on the 7th day I was beginning to have problems again. So I have done this for the past 3 weeks and it does seem to be working.

The only way I have been able to do this though is by self injecting, which I have done from the last of the loading doses 2 years ago, by buying the tools from a UK supplier which cost me £17 for a 100 No. set and with 100 ampoules from a German supplier which should have cost 63 euros, including postage, but was brought over as a present (I will not call it a German gift and that is their word for poison) from our partner family for being their son's mentor and support whilst he is in his final year at a local university. It would be super if I could discuss what is happening with our young GP as I know he is very keen to learn more but there comes a limit where my comfort and well being is far more important than advancing his knowledge.

The license for hydroxocobalamin in the UK is for 12 week dosing but 8 weeks with neurological symptoms. This is what is constraining my GP and as he is a junior partner he has to be careful what he does, his boss is an arrogant prig who actually knows much less that he thinks he does about anything, so I do have sympathy with the younger one. Maybe I am not doing the right thing, but as it seems to be working for me then to hell with the Doctors Surgery, I am in charge of my own future and at 73 I reckon there isn't anyone I can harm but myself.

Best of luck Penni if you decided to take charge of your own twitching feet. (The cat might start talking to you again)

[lunez22]

Hi Penni have you tried Magnesium? some say it helps I take it on and off and sometimes notice my body is quieter. I am not sure this is the way to go but on the weekends I just succumb and take a tylenol pm and sleep like a log. Have you thought that your anxiety is making it worse? twitching can also be a sign of anxiety. once again not the road for everyone but a psychiatrist I saw said anxiety will make most of my symptoms worse and she said it was okay to take a xanax until this is all figured out. also if the xanax stops the trembling/twitching I'll know if its more the anxiety or the b12 (whatever else it may be)

hang in there you are not alone