This morning I woke up stiff and tired but otherwise ok. My neck started progressively tightening up and is tender to touch at the base. When I move my head too far (or my arms the wrong way), I get spasmodic pain in my neck and shooting severe (but transient) nerve pain in my tongue followed almost immediately by a sensation of numbness which passes quickly. I not surprisingly am developing an ache in my ear and across the top of my scalp. I stopped a type of steroid (entocort - lower side effects than pred) about 4 days ago after taking them for 8 weeks. No taper as instructed.
I seem to recall having something similar years before arthritis, but in that case there was an actual first moment where it felt like my neck had gone out, while I was vigorously drying my hair. In that case I went to a GP who just told me to take Valium and rest. As I recall it slowly got better but it was a bad week.
Just thought I’d see if any one else has ever experienced this, and if there’s anything that was recommended for it? Can’t take anti-inflammatories due to Crohn’s.
Gosh poor you. And no I’ve no ideas but possibly some sort of kick back from stopping those different types of steroids? Have you tried heat and ice on it?
Thanks Poo, m guessing it might be from stopping the steroids too . Haven’t tried Ice yet (can’t believe I didn’t, but I guess even those of us who’ve been doing this a while sometimes need reminding ) . Will give that a go in front of the tv in a mo
Also, if you have any topical for muscle pain, maybe try it. I’ve been using cbd oil topicals with some real success. It’s now pretty much first line treatment for aches and pains by everyone in my house.
Thanks Stoney, I tried some difflam which helped. I’ll have to get some cbd oil - it’s finally legal here on prescription and I’ve heard such good things about it.
I think I’m just a bit freaked out as the shooting nature and electric shock sensation in my tongue suggest it’s neurological, I’ve been having mild chronic headaches for a couple of weeks, and of course I started Stelara recently. I was hoping three people would chime in with “oh yeah I get that all the time, it’s just from inflammation and will go away”.
Truth is the rational side of my brain reminds me I’ve had something similar 15 years ago from a mild neck injury (shaking my head while towelling my hair dry ), and I know Stelara doesn’t have demyelination as a side effect. But I’ve got a shot next week and I’m still a bit rattled.
The pain at the base of my skull (I realised it’s not actually in my neck) has lessened a lot today and I can turn my head at least a bit again without shooting pain, so that’s good. I have an appointment with my Physio Monday morning, and I’ll talk to my nurse Tuesday before the Shot is due Thursday, so I’ve got it all in hand, now just to breathe deeply and relax
That’s one of those lovely injuries. Yeah, I’ve hurt myself doing things like shaking my hair out.
Yes, the toe is pain does sound neurological, but I usually assume that it’s inflammation pressing on a nerve, rather than demyelization. With the headaches and neck pain, I would be thinking neck, not systemic. Hopefully you can get it figured out.
Just the three? Well I for one get a fair few neurological-type symptoms. As my Mum had Multiple Sclerosis they scare me. For me it’s mainly electric shocks in my feet though they’re creeping upwards - knees too sometimes.
The picture of causes I’m slowly building includes neuropathy (of course) but also spinal involvement i.e. that damage to the spine can lead to nerve pain elsewhere.
It is very difficult indeed to stay rational while experiencing nerve pain.
I’d say: exercise, think about sleeping position - height of pillows etc. - don’t drink alcohol but do pay attention to water intake. Also let hair dry naturally!
Just in case anyone is looking for this in future, I couldn’t tell much difference with ice when I tried it Sunday as the pain seemed to be already waning.
It has conveniently flared up again on the right side tonight, and OMG a wheat pack out of the freezer feels sooooo good, huge relief on something that was excruciating. I’ve found that I need to put the wheat pack over the base of the skull and side of the beck where the nerves are, it doesn’t seem to matter much if it’s fully over the spine. Thanks @Poo_therapy for reminding me to give our old friend ice a go!
. Haven’t tried Ice yet (can’t believe I didn’t, but I guess even those of us who’ve been doing this a while sometimes need reminding 
) . Will give that a go in front of the tv in a mo