Hi I have Vit B injections every 6 weeks. The last one left a nasty large bruise and felt no affects from having it. In fact I was ill over Christmas , now on antibiotics for a UTI and I think I have a double ear infection.
I am 51 and asked the GP if the possibility of the menopause may have an effect on things. She is unsure if I am menopausal as I had a hysterectomy and a lot of the symptoms are similar of fibromyalgia.
A week or two before I have my injection I am taking sumatriptan for migraines and I have restless legs, burning feet and pins and needles. Is that fibromyalgia or a neurological thing? So many symptoms overlap.
I have fibromyalgia and a possibility of spondylothorapy. I also take vit D 1600 iu daily. Apparently the levels are fine and I am not iron deficient. Is there anyone out there experiencing the same thing? I would love to know how you manage things. I’m feeling totally useless with my family around me reminding me of this. 😔 I am feeling frustrated with myself as feel if I do one thing I am knocked for six.
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Gloucester12
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I get all those sorts of things and really feel for you. I'm your age too - 50 - and have had progesterone for years, rather than a hysterectomy, but the effects can be similar. It's particularly horrible when your family are unkind.
Can you find a way to increase your jabs and see if that helps? I self inject daily and take lots of vitamins and minerals, as well as being very good about my diet, because of other gut issues and find it helps loads, even if it is a perfect solution. There is lots of help available in the posts and replies by wedgewood
Lots of us who are compromised end up really ill with loads of things at this time of year (this is the 3rd Christmas in a row I've totally missed due to impossible health hassles in the end) and it's really demoralising... Even with supportive pets, friends and family!
I find Sumatriptan is a lifesaver and doesn't affect my B12... but then I have plenty of B12 every day.
Some medics would say you are already menopausal because of your hysterectomy. If you've still got your ovaries you might be perimenopausal too. 🙄
There's obviously something causing your B12 and fibro problems and it is likely to be some stomach issue. If this means that your gut microbiome is disrupted this will have other knock-on effects, including lowering your immune function. (Mine's completely shot!!) .
So, what to suggest?
More B12 and a broad spectrum multivitamin and mineral supplement if you can take one (supermarket A-Z ones are as good as, if not better than, more expensive branded ones).
Possibly investigate what is causing your problems - get a gastrointestinal investigation maybe?
Look up "spoon theory" and use this to help you explain to unsupportive people how to see things more from your situation.
Know that you definitely aren't alone and there are lots of people here who understand and will be kind and helpful if we can be.
Come back and ask for more help and support whenever you need it! Good luck with everything gradually improving from this low point on. 🤞👍
"Apparently the levels are fine and I am not iron deficient"
Have you checked your blood test results yourself?
I was told on several occasions that everything was normal/no action and then I found abnormal and borderline results when I got access to or a copy of my blood test results.
These days I don't trust what I am told unless I have a copy of results on screen or in my hand.
Links to forum threads where I left very detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 articles, B12 books, B12 films, B12 websites and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I’m so sorry you’re experiencing all of this Gloucester. Have you thought of self injecting, especially as you do have neurological symptoms and the antibiotics for ear infections may have cancelled out the B12?
I’ve just recovered from another ear infection and found a colloidal silver spray helps although it may take a little longer than antibiotic to work. I also took very high doses of vitamin D3 + K2 , 6 x 4,000 iu. throughout the day.
Gareth Davies, top researcher, takes 30,000 iu a day.
PS. Having had migraines with aura most of my life, I’ve learned to avoid cheese, chocolate and tomatoes all on the same day. The aura often comes on when relaxing after a period of stress too but I’m lucky as have no headache.
My son, who was a diver, found research that links it to a PFO, which is a tiny hole in the aorta - usually present from birth. My granddaughter has this too and not usually anything to worry about.
I'm 64, began having migraine w/aura when I was in my early 30's. I find oversleeping is a frequent cause. I used to take triptans for migraine (like sumatriptan) as soon as the aura would begin, and found they were pretty effective at limiting the pain. As I've gotten older though, while the aura is about the same, the pain even without a triptan is very minimal; it was severe when I was younger. So now I just wait for the aura to pass & don't take the meds. There's either no pain, or very, very mild, probably wouldn't even notice it if not for the aura. Always better to not take drugs you don't need, so if you're older & had been taking a triptan when the the aura began, try skipping it next time & see if you get any pain.
yes! PFO and migraines are a think. I dive too. My sister in law had a PFO and had that fixed and it greatly helped. The test for a PFO is non-invasive.
Also, I came across that b2 deficiency can cause migraines.
"Conclusions: A pooled analysis of available randomized controlled clinical trials demonstrated that Vitamin B2 400 mg/day for three months supplementation had significant effect on days, duration, frequency, and pain score of migraine attacks."
I'm so sad for you. It is a very lonely place to be. I also have dealt with exactly what you are dealing with. So to start I am supposed to be taking BInj. once daily. I can do at least 3x/week right now because I've had trouble filling my prescription here in the US; not because of a shortage, but because of ill educated Dr's, that hold the prescription over my head (Its totally a money and control thing if not pure ignorance and bad education mixed with an unhealthy pride). I really did not improve until I was getting daily injections.
Those incredibly frequent injections along with an oral methylfolate, after injection, had an overall effect in blood/lung/heart palpitation/nuerologic issues for me. The constant infections, weird bruising, etc. I have also dealt with. I also have atropic gastritis that is healing. Your gut is your immune system and when that is not proper you will have lowered immunity towards infections, bacteria, etc. If the gut is messed up you won't absorb B12. So I think the two issues go hand in hand. I am working at both issues simultaneously and the gut especially with a more natural approach (Herbs, pro and prebiotics and dietary changes). So far it is slowly working and I'm feeling stronger and with more energy; only because I'm also working on healing my gut. With just the injections I still suffered many weird constant mystery issues.
The B12 injections were not enough to fix everything. It is like the B12 set the mechanics of the system moving again, but when they started moving they were all out of wack. So now I'm using nature and food, etc., to slowly put all the systems back into proper working order.... If that makes sense... I have had issues relating to absolutly every bodily function. Hormonal, intestinal, stomach, bladder, lung, heart/ vascular, inflammation, I too get migranes and stiff muscles. All of which are being improved with extra nutrition and not more doctors visits. Drs always told me I was healthy because tests show nothing and I think they are mostly right my mechanics are just way out of wack and I think need to be re-tuned after being out of wack so long. You are not alone, please hang in there. You suffering will only make you stronger and more empathetic in the end.
"I’m feeling totally useless with my family around me reminding me of this"
Sending you virtual hugs as I can relate to this. For many years I could hardly function as a wife and mother which had a big impact on my family and they didn't understand what I was going through.
This is a link to a blog post written some years ago about explaining B12 deficiency to family and friends.
I feel for you but take heart that even if your family don’t understand they still love you dearly.
I was in a similar situation and even though they have a better understanding now I have explained things I still feel lonely and guilty and isolated when I am resting up rather than being active like I used to be.
But this forum keeps me in a mentally good and safe place and I hope you will find that comfort too.
Thank you everyone for your advice. Sorry for the delay in responding. My vit b injection left me with a large bruise and painful lump which aggravated my arm. I have neuropathy in it. This has happened twice now. My GP has said there are no red flags from my blood test taken last March and I was told that nothing would be found.
I have had a second lot of antibiotics so feeling a little better but still exhausted. My GP puts this down to fibromyalgia. She has however agreed to HRT as a trial to see if energy levels rise.
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4 Autoimmune diseases and fed up
B12 deficiency, PA or something else?
Fed up
Fed Up Please Help
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