I’m nearly one month into starting SI (had 9 injections and am now EoD + taking cofactors) and I’m finding this so very incredibly hard.
The exhaustion is just overwhelming. I’m spending all day in bed and certainly can’t leave the house. Standing is problematic. I’m trying to cling on to the thought that this will get better, but it feels endless.
I’ve had bad ME for 9 years (possibly b12 issues), so am used to dealing with fatigue but this is another level. I can’t think, let alone work. I’m just barely existing with zero recovery after rest.
Any words of hope would really be appreciated so I can look at them when things feel really dark.
C xx
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Pepperpots302
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That will depend entirely on what damage you have accumulated and over what period of time. You are doing well. Just keep going.
I am SI, I've had 5 now and have been feeling pretty rough. But this morning I felt quite a lot better. I have just come over very weary but I think that's because I've eaten. Today is not a SI day, which is a pity. But I look forward to where this whole journey is taking me. For years I've been putting everything down to my hypothyroidism. I'm starting to wonder if that was the wrong conclusion.
Yesterday I had the best day I have had in 3+ years in that it was easier to be me.
I experienced improvement supplementing 2500 mcg per day of folic acid which is 2.5 mg which is 1/2 of the limit of dosage that is known to cause negative issues. This is along with my other supplementation.
Virtual hugs Pepperpots302, I too have M.E. and I understand. It is so difficult when you have lost the life you used to know to illness.
I am mainly in bed. Reversing out for me was horrible and seemingly never ending, so you may be going through this. Many feel worse as they start to heal. It is quite usual. Rest and heal.
Yes, you will improve, this is just a rough patch. You are doing your best, just keep going, s.i. etc. You will feel better and improve.
Im only a few months ahead of you and already making some improvements , physically I m stronger, my balance and eyesight are slightly better too!
I have been taking 1 shot a day for over a year now. It took about 6 weeks for most symptoms to subside, but a few months to feel like (mostly) normal. It is a daily task to track cofactors, and if I don't, the neuropathy (or migraine, or dripping pee, or itchy spots, or eats ringing, or hair falling out, or.....) will peak around the corner as a reminder. But I feel so much better than I did. Still get fatigued on occasion, but nothing like it was when I was so sick with PA. Cutting gluten products out helped in the years prior to my diagnosis, because they are all fortified with folic acid, which intensified symptoms (will deplete b12 if your depleted) before I knew I had PA.
Your body can heal. B12 shots should be injected daily until neurological symptoms are gone.
I am SO grateful to have my health back after the years of suffering. Still have some numb spots, but.... I feel good. I remember the days of not being able to get out of bed or off the couch. It is hard on the psyche. The shots make it better with time and absorption.
I do drink caffeinated drinks if I need a mental and physical energy boost. I LOVE caffeine for that reason. Reminds me if how I felt pre PA.
Hang in there. Keep believing in your body's ability to heal. Focus on the moments you feel okay. Even if they're brief. It can help.
If cutting out products with gluten helped, it would be wise to be tested to see if you have coeliac disease. It is one cause of B12 deficiency. If you are coeliac, it helps to be extremely careful. Oatmeal for example has no gluten in it, but for coeliacs, it helps to have oatmeal made in a gluten free facility. It helps to not toast gluten free bread in a toaster used for toast with gluten in it. And many other things.
But eating gluten causes the same neurological symptoms as the PA: tingling, numbness, parasthesias. I've never had any celiac symptoms.
USA wheat is highly fortified with folate. I believe this is what causes the neuropathy issues for me. New (and old) research supports this:
Selhub J, Miller JW, Troen AM, Mason JB, Jacques PF. Perspective: The High-Folate-Low-Vitamin B-12 Interaction Is a Novel Cause of Vitamin B-12 Depletion with a Specific Etiology-A Hypothesis. Adv Nutr. 2022 Feb 1;13(1):16-33. doi: 10.1093/advances/nmab106. PMID: 34634124; PMCID: PMC8803489.
Hello, I’m so sorry you aren’t doing so well. I found that my food allergies and intolerances had caused my B12 deficiencies as it was being used up with the increase of dealing with too much homocysteine in my blood. I also recently read that when we ‘take’ B12 it can push potassium into the cells perhaps not leaving enough in the serum for other necessary uses. I take a bit extra Magnesium in different forms and Potassium too-I even take potassium citrate in a drink occasionally. Most days I take 200mg magnesium twice as I’ve found that at my age as with most women that the bone stores can run low leaving you with osteoporosis etc so maybe look at your electrolytes and check your foods for intolerances as when you feel pain then other pains don’t get noticed-oh I also got massive relief taking 10,000 IU of D3/day but I make sure to only take it along with K2 to prevent soft tissue calcifications.
The very best of luck, I’m sure that you are doing the right thing taking B12 though and you may be restarting the healing process so that too can make you feel pains sometimes. I found my hypothyroid probably was caused by mineral deficiencies too-again with the time I spent on the toilet due to food allergies?
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Newbie with some hope and a couple of questions!
Just diagnosed and hoping for a better future. 
Out of Hope 
good news, I hope this helps others
