PMR and severe neck spasms

[attempttocycycle]

Has anyone had experience of severe neck spasms with PMR?

I was a long time being diagnosed PMR approx 3.5 yrs ago.-- usual high dose prednisolone etc which I have reduced to 2, 5 3 mg etc approx 4 or 5 times. Last year September i developed left sided neck pains on movement which quickly became extreme spasms; like fluid electric bolts down my neck tendons? inside etc particularly on an evening and overnight. They stopped me rigid, barely sleeping, unable to lay down etc; holding my head in one place- tried pain relief but unable to stop them. A GP considered this..he was not aware of spasms being a symptom of PMR but felt under the extreme circumstance to increase the dose of steroids to 15mg. after a few days they subsided.

Prior to this I had developed sleeping problems, low mood, anxiety, for which a GP prescribed mertazapin 15mg... I stopped this almost immediately being spaced out, zombie, I tried CBT which helped some of the sleep issues.

I am now on 6mg prednisolone reducing 1/2mg every 3 weeks but a suggestion of the previous pain seems to lie in wait.

The GP has considered after discussion with a rheumatologist and registrar, that the neck pain may not be related to PMR but responded to the steroids as many conditions do. He now has prescribed Amytryptyline 25mg... I am very wary of starting with another anti depressant, be it lower dose. Dose anyone else have experience of this< and any thoughts on the amytryptillin ( I am aware it could be 10mg)

(I would add that I previously considered myself pretty fit- regular long cycles and gym, and I have maintained cycling throughout this, at times extremly difficult-- been a lifeline really. But my strength has poured off of me in surges- i no longer bother with the gym. I am however positive in that I feel things improving at times, taking 'protein' to help offset matters etc}

[PMRpro Ambassador]

It isn't being used as an antidepressant, it is being used for possible nerve pain.

Is the pain along the sternocleidomastoid muscle?

my.clevelandclinic.org/heal...

[attempttocycycle in reply to PMRpro]

Thanks. It could be, the pain had a 'wet' long electric travel. I tried to ease it using a directed hot shower. It was a period of low mood, anxiety, tenseness, at times a fear of sleep almost( Personal and partner health issues) and I had had 2 periods of COVID. A time I want to forget.My neck cracks a lot now but I am aware this also relates to the condition. But why wasn't this suggested by the GPs? And does 25 mg seem a reasonable ongoing dose? Many thanks again.

[PMRpro Ambassador in reply to attempttocycycle]

The neck cracking isn't really anything to do with PMR - it is a natural process and totally benign.

Can't comment on the dose - lots of others who use amitriptyline will know better than me but I think it is usual to start low and see what you need and tolerate.

Why didn't GPs suggest it? Not familiar with the idiosyncracies of PMR maybe and what can come along to play as well.

Now you have posted you will see a load of related posts about severe neck pain, You may find something helpful there. Google sternocleidomastoid stretches and try them, see if they help. A hot water bottle or a wheatbag to warm in the microwave is a popular remedy and more convenient - lasts longer and you can watch TV ...

SnazzyD has lots of good stuff about SCM problems - hope she will reply too.

[attempttocycycle in reply to PMRpro]

OK and many thanks

[Mfaepink1973 in reply to attempttocycycle]

I’ve been on Amitriptylene for over 15 years. A rheumatologist prescribed it for severe lower back pain after I declined an operation to fuse my lower vertebrae. I have had no side effects from it and it helps me sleep. I think I started on 5mg and have increased over the years to 25mg as it seems to not be as effective after a few years so GP has increased the dose in 5mg increments. I wouldn’t be without it and definitely recommend you try it. Best wishes

Pauline

[attempttocycycle in reply to Mfaepink1973]

Many thanks, I suppose I wonder if 25mg is high as a start, or is the idea to 'kick it to touch' and stop? Much appreciated.0 no

[Mfaepink1973 in reply to attempttocycycle]

The 5mg was enough to control the pain for the first few years but seemed to stop being as effective after a while so was increased to 20mg then the same thing happened after a few years so increased to 15 and so on. Why not ask if you can try a lower dose to start and take it from there. I know Amitriptylene is used as an anti depressant in higher doses so maybe that’s why your doc wants you to start on 25mg.

[attempttocycycle in reply to Mfaepink1973]

Thanks. I will try and discuss the reasoning with the GP. A difficulty is.. is that I see a different GP almost every time, and this medication was prescribed by the practice registrar etc We all know the difficulty practices are having currently. All suggestions gratefully received.

[SnazzyD in reply to attempttocycycle]

It is often difficult to pinpoint causes of pains. It may be an irritated nerve due to a musculoskeletal problem. When there is a lot of stress around it is very easy to end up with chronic postural habits. The sternokleidomastoid muscles are very vulnerable to stress and small postural stresses and can cause symptoms all around the neck and head, some mimicking GCA. I’ve had few alarming episodes only to find my Bowen therapist helped in an hour, scotching the GCA theory. Anyway, it may not be this that is causing your problems but it is worth knowing what they are, where they attach and what happens when they are stressed. It is one bit of physical housekeeping I can’t neglect, especially when stressed or out of condition. Having had a few bad bouts of Covid I have found i’ve been left with rubbish neck and shoulder balance which sends me back to square one 🙄

healthline.com/health/stern...

youtu.be/DCOuG3bs2f0?featur...(Not working as expected?)

[attempttocycycle in reply to SnazzyD]

Thanks, that was very useful, particularly the position of the associated nerve. I admit ..at times I wondered if this was related to GCA, particularly as it seemed to affect the eye and lid. However, I was told this would show as severe headache etc. I have initiated some neck movement exercises from You tube and they seem to make a lot of sense. i agree about the posture issues- I am starting Pilates, and conciously improving posture whilst cycling and walking ( starting long walks).

Thanks again.

[PMRpro Ambassador in reply to attempttocycycle]

By no means everyone with GCA develops headache. Pretty much no single person demonstrates all the potential symptoms of GCA - whatever doctors think!!!!

[attempttocycycle in reply to PMRpro]

Again many thanks, I suppose the trouble I had was trying to make sense of all this when I felt absolutely lousy.

[PMRpro Ambassador in reply to attempttocycycle]

Really doesn't help - especially when it could be in a foreign language to the average patient.