Hi all, I’ve been suffering strange shooting pains, tingling, aches, & occasional muscle twitches (including one under my eye for a couple of weeks) over a period of 4-5 years. They first arrived during a Crohns flare when I was only drinking things like complan & liquids, and the GP I saw at the time said it sounded nutritional & I needed more roughage. I did manage to build my diet up after that and the pains/sensations ebbed away. They sometimes disappear for as long as 6 months, or longer then come back & go away again.
I had an ileal resection nearly 20 years ago, have regular B12 shots & had my active B12 tested recently which came back as high.
About 2 years ago my iron came back as on the low side (28 in range of 20-300) so the doc suggested it might be that. I’ve only managed to raise it to 47 from the low of 28 a couple of years back (I couldn’t stomach the high dose tablets from the doc) so I wondered if it could still be my iron. B12 still seems fine, magnesium I also got checked was fine. I’ve also no idea what my iron levels have been historically & also I am aware the the ‘normal ranges’ are invented mathematical ones, and so some of us might need more of something than others do.
Thing is I rarely feel tired or suffer any of the other ‘low iron’ symptoms. I have pretty good general energy, considering my Crohns I’ve always felt very blessed in that department. I dont get brain fog, or coordination problems. I feel pretty sharp. I don’t get unexplained lows or depressions. I do also have Ankylosing Spondylitis but it doesn’t feel related to that either. That gives me general hip/lower back aches & is in general remission for about 12 years.
Has anyone else had any similar symptoms - nerve pains, muscle cramps/twitches, tingling, even burning sensations - And got to the bottom of it? To me it sounds like classic B12 issues, but active tests suggest not.
Someone suggested it might be a Restless Leg Syndrome in all-over-body format, but I don’t get the restlessness aspect & at night it hardly bothers me.
Any thoughts would be very welcome.
Thanks! Xx
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Wellington175
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I would suggest testing your vitamin D levels. It’s not something normally tested but can cause a whole host of issues similar to low B12.
I had neuropathy in my hands and feet. My doctor kept telling me it was either my disease Rheumatoid Arthritis or my medication Enbrel causing it. I had electrical tingling that ranged from annoying to painful in my extremities-both hands and feet. Then after the electrical feeling, it would just burn like crazy, red hot. It hurt to walk. This went on for years! Then I started having neurological issues and my doc finally investigated. I had very low Vitamin D!
I got on vitamin D and within about a month or two my neuropathy went away, and my neurological issues went away.
Really I suffered and suffered for years because my doctor never thought to test me for this, probably because vitamin D testing is not covered financially. But- I found out for Crohns and RA patients it is in Canada.
I now take 5000IU each day, as my last test showed I am still lowish
I think I’ve actually solved the mystery the last few days having piecing it together with a couple of doctors. I think I’m suffering stress reactions. I just didn’t know they could manifest like this!!
I always assumed it was nutritional as I date it back to a Crohns flare but now with some real thought I can align it to Lots of health concerns/worries, actual life stresses at the time, or even a delayed reactions. I worry more than I think I do.
But thank you for the Vitamin D suggestion. The reason I can discount this in my case is my level is the higher end (98 last test) from having taken high does 10,000-5,000 iu for around 10/11 years. My consultant always tells me I have one of the consistently good levels he’s seen in his patients. (But that’s because I took private health care advice on that & haven't followed the NHS recommendations - 1000-2000 units my dietician suggests!!). All other levels are good apart from iron on the lower end, which is why I started to consider that...
but thank you - it is so often overlooked. I was luckily, an early adopter. And I’m so glad it’s helped you Long May it continue...xx
Am replying to you here now cause i’m so glad to find you were posting on forum 7 months ago...maybe you’re still here sometimes:
my univ hospital has had me on Elemental Diet for 5 months and there is no sign i’ll be coming off it any time soon....my husnand has early onset crohns and our hospital tried Elemental Diet on him back in the1980s, but it wasn’t helpful at all in his case. His crohns finally went into remission approx 10 years ago...and now it seems i’ve had crohns for years.
Anyway, i just posted here seeking replies from anyone with experience of Elemental Diet:
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Long May it continue...xx
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