Last reply 2 years ago
Back issues

I may ramble, just trying to piece this all together in my head.

I have RRMS. I have horrible back problems as well, and occasionally a super-sore tailbone. The tailbone seems to be healing — the cause of the pain was never figured out. Now it hurts occasionally, instead of every day. No idea why or what triggers it to hurt sometimes. My back… so I’ve had back problems for probably 10 years now but nobody has ever really figured out why. I’ve had probably 6 MRIs, I’ve had steroid shots in the disc, the facet joints, the SI joints and the tailbone. None of those helped. MRI shows severe facet joint arthritis. Back when I was a runner, I had minor SI joint issues, it wouldn’t stay in place that well, so I had some PT exercises to help fix that. I still do those but from time to time I can feel when that joint is not right. At one point I had a herniated disc, then a torn disc but both of those seem to have healed, and my neuro looked at the most recent lumbar MRI from October 2015 & said the pain I have doesn’t really correlate to the MRI so he’s not sure what the problem is (and he’s a neuro, not an osteopath, so that makes sense, he was just looking because he’s a nice guy). People ask me now if the back & tailbone pain could be MS related. I don’t think so. But wanted to throw it out there to you guys, see if you have back problems? Repeated bending is the worst for me, but walking is bad too because my back stiffens up.

This weekend I totally over did it. I recently bough kayaks. Saturday was their maiden voyage. They’re not super heavy but it was hard work to load them onto the car, unload them, kayak, re-load, and unload again. I should have stopped there. Then I did yard work for a bit. Took ibuprofen because I knew my back would hurt, although it was really ok. Woke up yesterday morning, still ok. Decided to go on short 2-mile hike with my mom. That did it. Back was so bad I could barely walk, which then cause my bowels to, um… well, let’s just say I had issues. This happens when my back gets that bad. I don’t know why, but I’ve heard a couple of other people have had this issue too. This morning, my body is fatigued, and my back is weak & sore. Took more ibuprofen, and have learned my lesson (says me… but it’s summer, and I love to kayak & hike. I need to learn!!!).

Just curious if any of you have back issues and if they are really unrelated to ms? It would be so nice to know WHY my back gives me such problems. People say “strengthen your core.” Yes, this is true, but a couple of years ago I was in great shape, strong core, and I still had back problems like this. It is beyond frustrating. I can accept MS will tire me out, but I need my back to cooperate as well, I don’t want 2 separate issues working against me!!

Michelle
xoxo

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naomih
3 years ago

My shoulders are my Achilles! If I don’t do some really odd looking exercises most days they decide to stop moving!! I spend quite a bit of time at gym trying to stand up normally. I look a knob, but don’t care!!


cameron
3 years ago

My back issues turned out to be vitD deficiency. I’d been on industrial-strength painkillers and prescription anti-inflammatories for nearly three years as the back problem gradually worsened. It had all started with a couple of falls, when I managed to damage a vertebra. Like you, I had the injections then finally surgery to chip off the part of the disc that was pressing on the sciatic nerve. Even post-surgery, however, I was constantly in pain. I couldn’t turn over in bed or sit for more than half an hour. Two months after beginning supplementation, I didn’t need either type of tablet and I have no back problem at all now. Completely healed.


isaacson72
3 years ago

@cameron – that’s interesting. My vit D is 18, or it was a couple months ago. Apparently that’s really low. I’m supposed to be taking 5,000 IUs a day of vit D but I frequently forget. I’ll try to make it a point to remember that. It seems to be getting better the last 24 hours. Today rather than pain, my back just feels really achy & tired. I’m trying to stay active even though it hurts… lots of walking, which absolutely kills unless I stop every so often and bend over, stretch it out. Hopefully more vit D will help that. It doesn’t stop me from doing things but it really limits me. Exercise is so good for everything, it shouldn’t cause so much pain! Even walking… I mean, come on! That’s just ridiculous.


cameron
3 years ago

Mm. My vitD level must have risen very fast for me to have had the dramatic improvement that I did. The blood test came back as deficient bordering on very deficient – I can’t remember the number but I’m pretty sure it wasn’t as low as 18. My initial prescription was only low-dose but after I’d read the research findings on the Barts blog I began to wonder about a higher dose. My neuro wrote to the GP requesting that I be prescribed 5,000iu daily and I’ve taken that ever since. I’ve never been re-tested but I’m sure I’m Ok – well, I feel it, anyway! I’m sure I’ve read that it can take a long time to get levels up – didn’t for me, but in your case I’m wondering if a) you’ve given it enough of a chance and b) whether you should try a temporary fix of 10,000iu?? It would be worth getting re-tested a.s.a.p. to see what your vitD status is at the minute. Another thought was a neurophysio assessment – or have you gone down that route already? I’ve had much better feedback and information about musculo-skeletal issues from physios than from the GPs. Worth persevering – there has to be a reason for it all.


elzejoseph
3 years ago

I too am having sever back ache at times only while sitting without back support or while walking for so long time. This is making me feeling ridiculous. I started doing Yoga which is sort of giving me a relief… I wonder what to do for my back pain


nutheadmom
2 years ago

My tailbone has been giving me HELL!!! Hurts so badly!! Going to see in chirp & upping vit D will help. Thanks for D suggestion.


nutheadmom
2 years ago

My tailbone has been giving me HELL!!! Hurts so badly!! Going to see in chiro & upping vit D will help. Thanks for D suggestion.


isaacson72
2 years ago

@nutheadmom I had tailbone issues awhile ago, after driving from Washington state to Utah and back. Ended up having my car’s drivers seat re-cushioned, which helped a lot (I have a long commute to work as well & the car was new, so it was worth the expense). The tailbone was excruciating — I feel your pain. Nothing helped me but time. I think it was about 8-10 months before it got better. I did not see a chiro though, I just rode it out.

Just re-reading this post I started from a couple years ago was depressing. My back is STILL a disaster. I’m doing acupuncture right now, 6 treatments for 6 weeks. It probably would have helped, but I slipped on our deck yesterday and wrenched something so now it’s worse than it was when I started acupuncture. Go figure.

I hope you get some relief from your tailbone, I know how much that hurts. I bought a butt pillow from amazon and it was a lifesaver. I still use it all the time (especially in the bleachers during my son’s track meets!). Here’s what I got:

https://www.amazon.com/Coccyx-Orthopedic-Memory-Foam-Cushion/dp/B00V2L5JRA/ref=sr_1_1_sspa?ie=UTF8&qid=1516034180&sr=8-1-spons&keywords=tailbone+cushion&psc=1

Good luck.
xo

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