Hi all, thanks for taking the time to read my question!
Maybe this is a dumb question, but do any of you struggle with having muscle spasms in your back? Today I went for a walk outdoors and the weather where I live is changing to cooler. I started with a somewhat heavy jacket and about 15 minutes later I got too hot in the sun, so I took off my jacket and carried it under my arm. When I got home, I took my cat out and sat on my front porch in the cool shade with no jacket and about 5 minutes later I felt a stabbing muscle spams in my mid/upper back on the side of my body I had been toting my jacket on during my walk.
I feel like over the years, my back muscles especially have become more susceptible to spasming if I get cold, if I carry even light weights, if I haven't eaten well, or if my daily movement routine varies too much in terms of extra or less movement than usual.
A couple years before I was diagnosed with PA, my back spasmed so hard while I was at work that I literally was having trouble breathing.
I don't have super advanced neurological symptoms, and the spasming isn't consistent. Does anyone have insights about this or willing to share their own experiences?
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Cobalt1312
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I had random muscle spasms everywhere when my symptoms were at their worse.
The most painful ones were spasms in the muscles between my ribs which would make me drop to the floor.
Eventually the spasms disappeared but I had to treat for a long time before this happened and still require far more B12 than NHS will give me to stop them coming back.
How often do you get B12 injections?
I'm just wondering if you're getting enough.
Are your folate and iron and Vit D levels good as well?
Thyroid issues can lead to muscle spasms in some cases so have you had any thyroid tests?
I suggest putting any thyroid results on Thyroid UK forum on HU.
Sleepybunny, I'm so sorry you went through that and it's inspiring to hear you're doing a lot better! Between the ribs would suck, excuse my language. It's horrible to feel like you can't breathe!
I've been injecting EOD for about 6 months and I was ramping up for about 2 months before that. I was diagnosed late last fall/early winter so the months injecting I mention are my entire recovery so far. I was on cyano, and switched to hydroxo because I'm concerned I might have mast cell activation syndrome. I'm super sensitive to basically all medications and supplements, so I thought B12 without a preservative might be better tolerated. I am actually planning to back off on frequency a tiny bit to see if some of my MCAS symptoms improve.
I take 5,000 iu vitamin D 3x a week. I was deficient, but I'm back up in the safe range with some aggressive supplementation over the last year or so. Folate I think is probably decent. I had to back off supplementing it bc I started having really bad insomnia, itching/crawling feeling of skin, joint pain, etc. I work with a nutritionist who is concerned I am an 'overmethylator.'
I've had my thyroid tests several times and the tests have always been 'normal.' I will definitely be on the look out and bring it up with my doctors again.
"had my thyroid tests several times and the tests have always been 'normal.'"
I suggest you put your thyroid results on Thyroid UK forum on HU. It's a very active, supportive forum.
When you say your tests were normal, did you see the actual results or were you just told they were normal. I always check results myself these days after being told everything was normal and then finding that not everything was normal when I got copies.
I did look at them one of the last times and it was right on the edge of normal. I'm with you about asking to see the results myself at this stage of my health care.
I believe some doctors have a need to put people at ease when concern is actually warranted, and many doctors aren't willing/able to think creatively enough to see patterns that may be slightly outside what they're dogmatically told are the only important results. Black or white... insert eye roll and huge sigh.
Yes I have similar problems and was once in hospital overnight and then struggled for a few weeks with unexplained back pain , I also notice that I get pain after doing the smallest of jobs in the garden these days for instance I did a small amount of pruning yesterday and this morning everything hurts. Also carrying a shopping bag or shoulder bag makes my arm and neck hurt even if there is very little in them and I am also worse in the cold weather. I try and get by using heat on the area if I can as paracetamol doesn't seem to do much for it. Hope you feel better soon. Best wishes😀
Thanks for sharing pitney! I'm sorry you've had trouble with muscle pain and spasms too. That must have been pretty intense to end up in the hospital because of it! Thanks for the well wishes and kind words! Right back at you! 😊
Interesting reading your blog. I have been in terrific pain in my back for 3 days now. I am puzzling as to what is causing it. I have been trying to lose some weight and missing out on breakfast sometimes, which has meant I am taking my thyroid medication (I don't have a thyroid due to thyroid cancer) at different times.
(I have monthly B12 injections at the my doctor surgery)
I know my iron is low which could also be a reason, as I have started yo have nose bleeds again.
Now I am wondering if just changing my usual routine caused this pain in my back.
I agree with Sleepybunny thyroid could be in the mix for you too.
Margo I'm so sorry you're in pain right now too! 3 days can feel realllly long when you have unresolving pain 😖 I hope you're feeling a little better today. I hope you start to hone in on some possible causes and relief! So many variables, it can get overwhelming right? Often times I feel like I'm at a bit of a loss as to why I'm doing better or worse on a given day. Hang in there and thanks for your response!
Hi Cobalt1312, It's never a dumb question! I do feel for you, especially with the really hard spasming! I hadn't considered spasms being down to PA ( I also now have Under Active Thyroid) - but it's clearly a possibility with nerve issues. I'd had peripheral neuropathy in arms years before PA was diagnosed (it's said your B12 stores get low over c. 4 years before identified).
Unfortunately, apart from empathising with you, I'm sorry, I can't offer any assistance - apart from relaying my experience of a similar issue, which I now just accept - though didn't ever get to the bottom of it with the NHS.
Mine didn't start for any particular movement or scenario. They began suddenly one day 8 years ago while resting and the first time, I was shocked/traumatised because of the sheer pain which went on for 20 mins. (but frightened as no idea how long it would last!) I felt nauseous (but no vomiting) each time. Did actually consider going to A&E at the time in case it was a stroke? but my face didn't drop (:). Began at back of upper arm, up shoulder and down to upper back on one side, with the pain being in from shoulder blade. I involuntarily wrapped my opposite arm around my back to try and stretch the muscle. This happened once a month for 8 months (either side) - then continued for years at gradually shorter events, until they now only feature once in a while and only for a few minutes. I'd heard about some of the toxic ingredients in the Flu jab, so, without proof of cause (Winter 14/15), reacted by stopping that (didn't believe it could be I/M B12). During a long term stressful period since, I lost many a night's sleep where the pain radiated from the main pain site when lying down. I did eventually book a GP's appt. - but in 2021, after main Covid period, so could only get a Telcon. He did chest Xray and B/Test - all clear, of course, so NFA! I now live with a persistent but not daily, mild pain in the back. Have you approached any medical staff about it? If NHS, it may mean getting them to even see you F2F, let alone carry out tests as a starter for ten? I'm sorry you're suffering with this, Cobalt - and hope you can get to the bottom of it somehow? Best wishes.
I too have spasms in my lower back which literally stop me in my tracks. I have had x rays and blood tests but no answer to it ..its just now and then but it is sudden and painful..
My B12 was at 97 when I was diagnosed so could be my body getting used to regular injections
I used to get really painful cramps at night and taking a magnesium supplement helped a lot.
I would never take a potassium supplement unless it was prescribed by a doctor as excess potassium can be harmful in some situations. I do eat fruit and veg that are rich in potassium.
I had magnesium checked about a year ago and the serum level was slightly low. I have read that if serum levels are at all low it usually indicates a pretty significant deficiency (though most MDs seem completely oblivious to this).
When looking at old posts on this site about vitamin D issues and PA, I saw a thread talking about how magnesium is needed to activate vitamin D, and as I was deficient and taking large doses of vitamin D, this really caught my eye! I started taking magnesium a few months ago and it has made a big positive impact on my health, especially my digestion! It has also essentially stopped the arrhythmia I was experiencing. Have you read the book "The Magnesium Miracle"?
I also recently added salt purposefully back into my diet and then had to stop bc of pain in my stomach and small intestines. I was off of it for about a week and a half when I had the bad spasm I wrote about, so maybe it's related? I have added a little salt back in my diet and my back is slowly, slowly improving. I have to be really careful because I seem to not tolerate many, many, MANY things in my diet without pain.
Maybe it's time to ask for a potassium blood check...
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That does sound extremely hard to deal with, my heart goes out to you!
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