B12 folate

[Nez1980]

Can low or high levels of b12 or folate cause joint pain ?

[fbirder]

I am convinced that the joint pain I had for thirty years was fixed by taking methylfolate. healthunlocked.com/pasoc/po....

However, I am currently bedbound by a severe attack in my knee. I can just about walk 20 m with crutches. So I may be wrong.

[Nackapan in reply to fbirder]

Oh dear. That's not good.

Hope you get improvements soon.

Is your folate level okay?

Warm or cold wraps may help. ? Is the change in temperature or humidity a factor? My daughter can suffer with her knees. She wears stretchy knee supports that she thinks just kept her knees warm ?

[Hidden in reply to fbirder]

Sorry to hear that ,I read that small magnets on the knees were good for pain relief I don't know how true it is but it can’t hurt if your suffering such pain maybe worth considering or researching? Hope you feel better soon x

[Narwhal10]

Hi Nez,

I originally had a diagnosis of fibromyalgia (experienced joint pain) but I’m pretty certain it was low B12 for me. I do hope you find out the cause so you can have treatment. X

[Nackapan in reply to Narwhal10]

Thats the label my daughter was given. It was wrong. Also I think stopped them investigating so a further delay in a diagnosis.

[Narwhal10 in reply to Nackapan]

It’s quite sad really to know that a little bit more knowledge can totally change someone’s life.

[Nackapan in reply to Narwhal10]

Yes

[Cherylclaire Forum Support in reply to Nackapan]

I'm not even sure that fibromyalgia counts as a diagnosis, any more than IBS does.

It seems to me to be another syndrome - a collection of symptoms -and the true diagnosis remans unknown, although everyone can stop looking because they have given them a title.

[Or do I just need an injection ?]

[Nackapan in reply to Cherylclaire]

No you are right. I felt the same when she was given the diagnosis. I knew it was because they didnt know.

Awful when I literally stopped her being discharged from hospital until they did more tests twice in the space of 3 days.

On the forum she uses someone posted .

Beware of a fibromyalgia diagnosis. Keep pushing for more tests.

A high % of people with pots and or Ehlers Danlos have this title first and also undiagnosed b12 deficiency folate deficiency vit d .low ferritin . PA with and without macrocytic aneamia. My daughter was one. Mainly young women.

Do I need an injection ? or is there a theme here with women!!!

Chronic fatigue I'm labelled with the same . Symptom not illness

[Cherylclaire Forum Support in reply to Nackapan]

I said to the third gastroenterologist (the one I was really counting on) as she was about to sign me off :

"Does IBS make your hair fall out, your shins go numb, and cause cognitive problems? "

She said:

"No, I appreciate that you have other symptoms that can't be explained, but as far as this department goes ....."

..and signed me off anyway !

At least she gave me some tests- ruled out Coeliac disease on biopsy. The patchy gastric metaplasia and flattened mucosal pattern at D1 and D2 (duodenum) found during gastroscopy were never explained to me once Coeliac eliminated.

With the previous two gastroenterologists, I got a 5-10 minute slot in which to put my case. They "diagnosed" IBS without any tests. The first one told me at the time:

"If your symptoms return before your B12 injection is due, go back. Don't leave it until your injection is due."

However, he told my GP in his report that he thought that I had IBS, something he hadn't bothered to raise with me at all. Infuriating to be lied to like that, and so disrespectful when you have waited for many weeks to see someone you think might be able to help you.

Luckily, my GP never believed this to be my problem; she would have been more than capable of dealing with that herself much earlier, at primary care level. Doubt that they bothered to read a word of her detailed reports.

You also know when you are being fed rubbish. I was told that my raised MMA was "my normal" for three years - until it was tested last year for the sixth time - and found to now be comfortably within normal range !

The only treatment during this period ? Frequent B12 injections.

Keep going, my friend.

[Nackapan in reply to Cherylclaire]

Thank you.

Yes it's so horrid ti be dismissed by a specialist.

I saw o ne NHS neurologist for ? 20 mins who signed me off . The one that said post concussion syndrome. Also that i addicted to b12 injections and they could causes ne cancer. Very upsetting at the time.

Then prescribed amitriptyline up to 50mg a day. I coukdnt cope with 10mg.

The Gp was frustrated with the discharge! The 'addiction ' was not mentioned on the letter. No regard to light sensitivity in the hospital which gave me the worst migraine that night . Pains in my spine up to head. Truly horrendous. I did think of calling a and e. (Not lightly done)

Like you say such hope in such a small window after many weeks of waiting .

"Not my department " no caring of your suffering or consideration of what department you needed !! Very upsetting for you.

Keep going yourself and enjoy your big green spaces. T C x

[deniseinmilden]

High B12 won't, low can.

Low folate is likely to but in theory excessively high levels can too (but I haven't heard of this actually happening).

Methylfolate works for my joints, particularly knees, but not everyone needs it. If you have too much it gives you a headache from hell so you will know!

[Ritchie1268]

My surgery rang me last week wanting me to have a blood test.

I said no point in checking B12 as my levels will be off the scale as I SI.

She wanted my Folate, thyroid and sugar levels checking also.

Well B12 was obviously way up, but my Folate was really low, so have been prescribed 5mg again for 3 months then will be checked again.

The past few weeks my arms from my elbows to my wrists have been fealing really bruised. I'll have to see if this 5mg improves it?

[Cherylclaire Forum Support in reply to Ritchie1268]

Let's hope so.

Sorry to hear that you have problems - good that surgery rang you though.

[Ritchie1268 in reply to Cherylclaire]

My surgery are pretty good to be fair. Especially when I hear some of the nightmares on here that so many have.

They text me twice saying my B12 injection was overdue & to call them asap.

[Nackapan in reply to Ritchie1268]

Hope so. Let us know.

[Cherylclaire Forum Support]

I did initially go to the GP in 2015 with joint pain, especially in hip and lower back, as one of my symptoms. It did eventually get better with B12 injections, once B12 deficiency was found in 2016. My ferritin and folate were also low (although within range) and this was treated with 3 months of tablets. I get vitamin D on prescription because I was found to have osteoporosis of the spine.

With all this going on, it can be hard to tell which is the cause. It took a while to get these sorted out and stabilised.

I know that if I have less B12 injections than usual, I get a return of joint pain:

At night, I can't stand to have any pressure on joints, bones feel too heavy, so can't rest one leg/arm on the other. Makes it hard to get to sleep sometimes.

Wake up with stiff feet- going downstairs takes a while in the morning. It wears off though.

Hip/ lower back pain if standing still (preparing dinner) - or leaning forward (cleaning bath, hoovering)- for too long.

Strangely, walking for miles is not a problem. Can't run/jog, or even step off a kerb without looking though. No shock absorbers.

[Nackapan in reply to Cherylclaire]

Alot of that sounds very familiar.i sleep with a pillow between my knees . I cant stand on the spot for long at all. Small of back pain and weakness.

I get stiff heels which definitely have improved. Also wear off when I get moving.

Great you can walk for miles. So good for you.

I've never been able to jog. So cant blame deficiency for that 😅

[Cherylclaire Forum Support in reply to Nackapan]

That feeling can get better, Nackapan.

Do your legs get shakey inside if you stand still too long ?

You also, I think, get the other thing about food preparation- the dizziness of turning your head from cooker to fridge to sink to chopping board. Woah ! Slowly does it !

I used to like to run: always done it, not as a sport or for a club, just for myself- happy or sad or angry, or even just the satisfaction of getting the early tube home ! Lot of green space near me, luckily. Helped enormously in lockdown, even though I can't run now. Just having the space.

Good that your stiff heels have improved. First step toward betterness, I'm thinking.

Besides, you don't need to jog- you've got your bike !

[Nackapan in reply to Cherylclaire]

Yes when I stand fir too long usually in the kitchen! My legs do have an inner shake. Small of back painful and heavy feeling like I will collapse with weakness. Sone days I have to kero sitting down . Other days I can finish one thing then have to sit keep still.

Yrs I do get the other thing.

I can get really off balance/very clumsy and have to spot like a dancer so I dinr get dizzy.

That s not before a pirouette bit a simple turn from chopping board to pan or especially leaning down getting something out if the fridge needs recovery time.

Sometimes I forget as go I to automatic having cooked for 50 years lol and I have to give up as have to keep very still and I get that stagger walk ad balance gone then headache and pains running up back if head.

Yes you quite right I have a bike. Been a whil

e since my short ride but I've done it more than once now!!

So hoping for more improvements and the same wished for you.

[Fuzzy01 in reply to Cherylclaire]

You’ve described my symptoms to a “T”. Can’t go up or down stairs easily in the morning as my feet and ankles are so stiff and limp down the hallway like I’m over 100 and yet I can walk 10 miles! And also the lower back pain/hip if standing if one spot. It was these symptoms along with paraesthesia in my face that took me to an Osteo who then told me to get my B12 checked. 97! I think it’s going to be a slow recovery. New Zealand is much like the rest of the world, injections weekly for 4 weeks then monthly for 2 months then 6 monthly. Can’t foresee much progress with this ...

[Cherylclaire Forum Support in reply to Fuzzy01]

I don't know what the injection regime is in NZ, Fuzzy01 , but i was lucky enough to have a GP here who realised that I was struggling with the normal regime here (6 injections in a month as a loading dose, then 1 every 3 months) - and she got my methylmalonic acid (MMA) level tested. Because this links with the B12 as part of the process, it should rapidly return to a normal level after loading dose - mine didn't.

This indicated I had a functional problem at cell level, which meant frequent injections for a while: 2 a week for 6 months. It took 3 years to get MMA to within normal range.

You B12 level is very low. If things don't improve, ask for an MMA test to check that the injected B12 is doing what it should be doing, and is adequate to your needs. Let's hope recovery is going well and this won't be necessary. Just letting you know that this could help you, if you are not getting better. It will take time.

Wondering if your doctor is trying to find a cause for this very low reading ?

[Renal problems and small intestine bacterial overgrowth (SIBO) will have to be ruled out as the cause, if MMA level is raised.]

[RebeccaG33]

I was diagnosed with PA a few years ago. Aching joints is definitely one of the symptoms I get when my B12 injection is due. Hope that helps.

[fbirder]

It’s getting very frustrating. Not been able to walk without crutches for a week.

I was supposed to be picking up a new car (well, new to me) on Monday.

[Alpaca24]

Pain in my joints was also one of my first symptoms - worst in my hips and knees but also in many other joints, including in my chest (no other cause of pain/tightness found). It comes and goes for me and has been the only symptom that hasn't drastically improved with injections (sometimes I've even wondered if it has been more pronounced after injections). My folate was high normal although hasn't been tested since this first started for me in Feb.