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Pernicious Anaemia Society
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Chronic back pain

Has anyone else with B12 deficiency had chronic back pain as one of their symptoms, then noticed any improvement on injection? I stopped my B12 2 weeks ago as I am due a haematologist appointment (no diagnosis yet) and the back issues have come back with renewed intensity. Have a script for pregabalin for nerve pain but am reluctant to take it after a bad reaction to SSRI thanks to GP misdiagnosis! Any advice appreciated

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my tailbone hurt so bad, I couldnt sit. Felt like I had nothing but raw bone and been bareback horse riding for months...

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My chronic neck pain due to b12 deficiency... Or may be sitting long tim in wrong posture .. Best of luck

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I’m currently experimenting with no SI to prove a point to another GP, and the first/worst symptom to return is the ache in my lower back. I’m just hoping it will recover again when I start SI again (trying to get as low as I can manage before getting the private blood tests recommended here for active B12).

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Interesting Shattered-FedUp as that's exactly how I feel things have gone. Similarly I was experimenting by letting my levels drop so that my haematologist can test my baseline. Back pain is that intense though that I think I'm going to start SI again this weekend. Take care.

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Good luck - they say once we start supplementing the test results are meaningless but the NHS appears welded to them. I’m not sure how much longer I can bear it - only 4 weeks in ... but to be able to confront that GP I’m desperately trying to hang on!

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I have been seeing an osteopath on and off for a year, I thought it was totally unrelated but maybe it is interlinked?

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I suffered from quite a lot of lower back pain - which I think was more muscle weakness than nerve pain but that improved after getting my B12 levels where it is needed.

Pregabalin works in a totally different way from SSRIs

Although there is no guarantee that you won't have a reaction it is possible that it will help - think fbirder finds it useful so it is worth at least trying it.

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Aware of the differences in drug but just wary of any now after the SSRI experience. From checking out people's experiences online with pregabalin it seems to be split down the middle with some stating it has saved their lives and others indicating it has ruined it! I find the GPs (and nurse practitioners) are all too keen to prescribe anything but the B12 injections, which I find astounding. Latest nurse practitioner saga had one trying to prescribe me antibiotics for my weird hearing symptoms, tinnitus and head tightness! I declined.

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As Gambit62 says, I am one of those that find gabapentin a boon. But it only works for neuropathic pain, so if your back pain is due to a joint or muscle problem then it probably won't do anything. Also, my neuropathy isn't caused by B12 deficiency, so injections did nothing for it.

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Thanks fbirder. I have peripheral neuropathy (as well as the back pain and a whole myriad of symptoms!). I got the script dispensed yesterday but still reluctant to take them. Not got a definitive cause of my PN yet...

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I reckon 'suck it and see' is the best option.

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Hi

Sorry I can not give you any real advise on this but I can tell you that I had unexplained chronic back pain a couple of months after I was diagnosed with PA and that it went on for a good couple of months, was on pain killers for weeks and eventually I bought a TENS machine which I still use now alongside painkillers when I feel the pain start to kick in again.I also see a McTimmony chiropractor who helps me with my muscle and joint pain. In all honesty I can not say whether it improves after my injection or not as it seems to come and go without reason, should mention I self inject every month.

Hope you start to get some improvement soon I know how back pain along with everything else can get you down. Take care and best wishes

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Rheadster, sorry you are having back pain; I know it can interfere a lot with everyday life. I had terrible lower back pain (as well as calf/leg pain that affected walking) that eventually disappeared after a long time on B12 injections. So the pain was from damage to the myelin sheath covering the nerves, which was repaired with the injections. It did take a long time. I also had some cognitive neurological symptoms, which mostly also reversed. Often, there is an emphasis on the damage B12 causes to the upper spinal cord, but in my case the damage was lower, and maybe mostly to nerves coming out of the cord. I hope your doctors examine newer information about this condition and give you the help you need, especially loading doses for neurological symptoms. (Pregabalin was no help, hated it.)

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Glad to hear to you got sorted with B12. I am convinced (almost) that my problems stem from continual alcohol use - nothing over the top but 20 years is constant dosing I reckon has taken its toll. The paradoxical thing is if I drink I feel way better and it deadens the symptoms but deep down I know it's the cause of the problem. I will persist with the B12 and hope it sorts the majority of these symptoms. That's for sharing your experience.

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Hi bquoss, glad you feel better!

Do you remember how long it took?

Was it a month, 3 months, 6 months, a year, more than that?

I have been taking B12 for a month, and the symptoms that remain are back, neck, knee muscular and joint pain. I hope so much they will disappear eventually ;)

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I have exactly the same problem!

Back pain appeared 5 years ago during my first pregnancy along with fatigue.

Then a year ago during a second pregnancy many other symptoms (mainly neurological) appeared.

I have been supplementing for a month, neurological symptoms are getting better but I still have back pain.

I see two options:

- back pain was not linked to low B12 (my GP said I have "fibromyalgia")

- it will take plenty of time to get better but it is linked to B12 (I hope...)

I have the feeling my last symptoms to appear disappeared first. So I hope back pain will finally disappear too ;)

2 weeks is probably not enough to see a difference.

Good recovery :)

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