It's over a month now since I started doing IM injections every other day and I had hoped to see some improvement by now. Unfortunately I am still so so tired, I am falling asleep in work. I have terrible pain in my left leg, from my hip to my knee then down the bone to my very toes. It is keeping me awake at nights, that and the terrible cramping. The feeling that someone is sticking needles in me is still there too. I have discussed all this with my GP but she isn't interested The only improvement I have seen is the nerve pain that was down my right arm has gone and the migraines have lessened. That's great but when will the awful fatigue go? I have PA and have been having 3 monthly injections from GP. She refused to give me them more often which is why I started self injecting.
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Goaliegirl
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The processes of DNA synthesis, nerve function and energy release that need B12 also use lots of other vitamins and minerals to work properly and if you get short of anything, nothing works properly.
You may be short of other things, especially folate. It's worth having folate, vitamin D, iron and maybe your potassium and magnesium levels checked.
Once you have had the tests done you may benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, ideally from your diet.
Simple supermarket A-Z multivitamin and mineral supplements and similar folic acid tablets are generally as good as, if not better than, any branded ones.
If you are B9 deficient your Dr may give you higher strength folic acid tablets.
If this doesn't work ask again as there are other options too.
GP has had me on folic acid for about 6 months now. I also take calcium with vitamin D as I also was diagnosed with Osteoporosis. I take a multivitamin tablet too.
For cramps, look at your salt/sodium intake levels. If I get too much salt, my legs itch and cramp.
Also try taking Methylcobalamin sublinguals just before bed to see if that helps with sleeplessness at night. I find I dream better and worry, which can keep me awake, is less. It is counterintuitive as methyl usually perks me up, but at night it helps me sleep better.
For the brain fog and sleepiness during the day, I spread my folic acid into 3x doses and take methyl sublinguals to clear my head.
If you are sure your vitamin D and folate levels are good - I presume your GP is doing tests to monitor the effects of the supplements (s)he is giving you - and increasing them doesn't help, then I definitely think it would be a good idea to get your potassium, magnesium and iron levels checked.
Low potassium definitely causes cramping and with me I feel very tired, just can't function and feel bleak. I can drink coconut water and eat lots of nuts and bananas, etc and yet I still have to supplement with additional potassium because I have a range of absorption problems - I was amazed by how much I needed to start with. I use LoSalt because it is 66% potassium chloride and only 34% sodium chloride.
Magnesium is especially involved with muscle function but is needed for the B12 to work properly too. It can help with insomnia problems.
Iron is the same but it's also needed for hemoglobin to get oxygen around your body.
You do have to be careful with supplementing minerals as too much is as much of a problem as too little.
If you haven't done so already, I suggest you Google them to see the effects of deficiency and excess and what dietary sources you might like.
I have to take methylfolate as folic acid didn't work once I increased my jabs and stopped taking methylcobalamin. So that or pvanderaa's idea of methylcobalamin might help if maybe your body isn't methylating properly.
Other than that is your thyroid working OK? And parathyroid (especially with your osteoporosis) - it regulates calcium? Are your blood sugar levels OK (diabetes)?
Other more obscure autoimmune problems are possible too...
Hopefully something here will help you but if not please ask again - there must be something!
Thank you so much for your help, I'd be lost without you lot. No my doctor hasn't been monitoring them. When I told her I needed the injections more often she redid my bloods for the PA and said they were ok but as far as I know that's it. She's not the type of gp you can just ask to test something.... I took a list of my symptoms up to show her and she wouldn't even look at it. I have an underactive thyroid and take Levothyroxine 50 micrograms ..I also take Alendronic Acid for the Osteoporosis. I was also diagnosed with asthma and have inhalers for that. I've never had asthma in my life before. All these were diagnosed before she realised I had PA. although I had been going continuously with various symptoms including the awful fatigue. It was actually a pharmacist that said to me....Your body is shutting down! Get back to your doctor. She knows about the cramping and how severe it is but has never suggested testing my potassium levels. Looks like I will have to be a bit more forceful ...I know I can't go on like this. Mind you I told her that last time and she prescribed Amitriptyline. I can only say I am so glad I found people with the same problems here who are kind enough to help, it makes such a difference.
Was offered Amitriptyline as well, many times, but did not take it. I first went to GP about 4 years ago mainly with fatigue, diarrhoea and groin/hip/back pain. Found to have "wear and tear" lumbar problems, osteoporosis of spine, B12 deficiency, low ferritin and folate levels. A lot of tests done by a lot of consultants: gastroenterologists, haematologists, neurologist etc.
Nil else found.
A lot of different injection frequencies tried by GP in order to stop deterioration. Ended up with 8-weekly injections not being adequate even to maintain poor health, and self-injected every other day starting over a year ago.
Like you I expected symptoms to go. Some have fallen by the wayside, some are not so severe, some still there. I've stopped getting worse though. No afternoon naps or 14-hr sleeps, no stiff feet in the mornings, no waking up with a mouthful of watery blood, no significant hair loss, no trouble walking now ...... we're all different, these are just some of the things I recall.
When I'm doing alright, I feel so much better than I did then. When I have a blip (cause unknown) I feel like there is no progress and I'm stuck like this. It's not true, it's how I feel. The truth lies somewhere in between: while not for me a miracle, it's a long slow process- so long in fact that if I had not kept records, I would have forgotten what it felt like: propping myself up at the bus-stop just to get to work etc.
Keep going and don't get too downhearted about it. Keep a record of symptoms, when they occur and severity. It was a long slow slide downhill, it's going to be a long slow struggle back for some of us.
Thank you Cherylclaire that has given me encouragement. I will start keeping a record and continue to inject, believing I will eventually see some improvement. It's a struggle as you well know but hopefully there will be light at the end of the tunnel.
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