Tight neck muscles excruciating headache - LUPUS UK

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Tight neck muscles excruciating headache

Froggie70 profile image
22 Replies

Hi all it’s been a while since I’ve posted on the site, hope you’re all keeping safe and well.

I’ve not been so good lately and am having a severe flare after having to miss my methotrexate for two weeks (long story but gastroenteritis and a hospital visit were involved). Anyway I’m looking for any top tips on how to help with extremely tight and painful muscles at the base of my skull and shoulders. The headaches this is causing are excruciating and make me feel sick. I’m taking Co-Codamol (can’t even get out of bed without these) arnica gel and massage.

If anyone has any ideas it’d be greatly appreciated. Thank you. X

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Froggie70
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22 Replies
Horsewhisper profile image
Horsewhisper

Hi Froggie, sorry to hear that you’ve not been so good lately, that sounds awful having head pain and tight neck muscles. How about one of those heat pads (you can get them with lavender in them) that you put in the microwave and place at the base of your neck whilst putting your feet up for an hour or so? Amazon have a good range. Also, there is a fab muscle relaxing gel by Elemis calmed “Instant Refreshing Gel” . It’s a bit pricey, but it really does work and gives respite from the pain for a good hour or so. I used it a lot with my GCA head pain, I rubbed it into my temple and it gave pretty much instant relief. Hope these suggestions help and that the pain starts to subside soon enough. Xx

Froggie70 profile image
Froggie70 in reply toHorsewhisper

Hi, thank you. I’m going to have a look on Amazon but in the meantime I’m trying a hot water bottle. I like the sound of the gel, I will have a look on their website and QVC too. 🤗

PMRpro profile image
PMRpro

When I have bad episodes of spasmed muscles in my lower back I take a flooding dose of ibuprofen (800mg in one dose) and use a hot water bottle over the painful area - it is the antiinflammatory effect that is important, not just pain relief. That usually works for up to 24 hours and after that smaller doses work. It is approved by my rheumy (I'm on oral steroids so adding iboprofen has to be balanced against the risks). Have you got one of those long hot water bottles or wheat bags that you can drape around your shoulders?

I had similar problems to you years ago and used Bowen therapy which did make a difference - although in combination with my osteopath it was even better. Not sure if that is an option at present - not sure anyone would know either!!

Now I am under the pain clinic and they keep it at an acceptable level with subcutaneous injections of lignocaine - I go every 4-6 weeks usually. If I weren't on anticoagulant therapy they would do deeper injections and they are much better.

This site is usually good:

spine-health.com/blog/how-r...

and this also lists approaches you can try:

summitmedicalgroup.com/libr....

You have my sympathy - been there, done that

Froggie70 profile image
Froggie70 in reply toPMRpro

Hi there, thank you. Unfortunately I can’t take ibuprofen (it upsets my stomach and after my gastro incident it might be a disaster in the making). I’m really interested in looking into Bowen therapy. I used to get acupuncture and that helped a bit but it was costing a fortune and had to give it up. I usually do Pilates but my joints are so so just now I can hardly move. Thanks also for the links you included, I’ll give the stretching exercise a wee go. Thanks again🤗.

PMRpro profile image
PMRpro in reply toFroggie70

A good Bowen therapist will be up-front with you and say if it hasn't helped in 3 sessions it is unlikely to - even if it might take a few more to get a really good result. It isn't like the open-ended commitment to acupuncture which is more like a dozen plus sessions.

Salzer profile image
Salzer

Hi Froggie. I suffer from something very similar and it's awful. I use an anti inflammatory gel - ibuprofen or diclofenac - applied to the area, which does help a little. I'm on steroids too so don't want to take them in tablet form. I hope you find some relief. It's miserable and has caused this grown woman to cry a few times! x

PMRpro profile image
PMRpro in reply toSalzer

My rheumy actually used high dose NSAID infusions (every day for a week) a few years ago - horrendous, especially on the days the nurse wasn't good at needles! But said it is usually OK as long as you take a PPI at the same time (omeprazole or something similar)

Salzer profile image
Salzer in reply toPMRpro

Thanks, good to know. I have just started to take a ppi alongside the steroids as I've only just recently started them as a longer term treatment for stubborn pericarditits. My poor stomach has been in bits so had given up on NSAID in tablet form though I had previously found them helpful with the neck/skull/shoulder headache thing Froggie was asking about. Those infusions sound horrible!

PMRpro profile image
PMRpro in reply toSalzer

The bruises were something else!! And although it was only supposed to take half an hour, the cannula kept tissuing which slowed it down and it was half the day gone - I only live a 10 min drive away!

Froggie70 profile image
Froggie70 in reply toSalzer

Hi, I think I’m not bad being able to handle my lupus pain (I’ve had enough practice) but oh my this is something else. Thanks for replying 🤗

Bakbre profile image
Bakbre

Hi Froggie70

Have you ever thought it could be migraine? I only ask because that’s what I have and it sounds very much like it. Tight muscles, feeling sick (sometimes I am actually physically sick) and of course the excruciating pain in my head. I sometimes used to think my head was about to burst!

Like you I take 4 or 5 different medicines but I am also allowed a tablet from my GP called Naramig. I take this immediately the feeling starts & what it does is loosen the neck muscles and stop the swelling there which can stop the pain. It doesn’t alleviate it altogether but it sure helps lessen it, so much that it is bearable. I only need to take the one tablet and then if needed I take a couple of co-codamol.

Migraine can be a side effect of all the medicines we have to take so I would check it out.

I hope this helps, I know how bad the pain can be.

Froggie70 profile image
Froggie70 in reply toBakbre

Hi Bakbre

That never even occurred to me. Thank you, next time I’m at the GP I will ask about this.

rlupus profile image
rlupus

So sorry to hear this i am in the same situation as you with the headache and pain in neck shoulders its been 6 days now plus I have a very heavy cold gp has started me back on antibiotics and told me to get the vicks humidifier so my son went a nd got it yesterday and I must say it has helped and managed to sleep for a couple of hours but it is awful just hope it goes soon .

Hope you get better soon x

Froggie70 profile image
Froggie70 in reply torlupus

Hi rlupus, it’s bad enough the headache but to have a bad cold on top is just pants. I hope you feel better soon. X

rlupus profile image
rlupus in reply toFroggie70

Thank you yake care x

Babydriver012 profile image
Babydriver012

Hi, sorry to hear you’re feeling unwell. I have trouble with my neck too. I found some exercises on you tube for tight muscles in the neck- they do help. Also try not to hunch up when cold or stressed.

Froggie70 profile image
Froggie70 in reply toBabydriver012

Hi,

You’re 100% right about hunching up. I’ve started back work, albeit working from home, and I can feel myself hunching over the keyboard. PMRpro has kindly attached a link for some exercises so I’m going to try these as soon as I’m not so tight, I can’t turn my neck at all. Thank you for getting in touch. X

miccika1 profile image
miccika1

I think you should go to emergency if the headache is unusually bad. Sometimes with neck stiffness plus headache it could be something serious

Froggie70 profile image
Froggie70 in reply tomiccika1

Hi miccika1, I’ve had this so many times now and with the tight muscles that I’m sure it’s all connected. Thank you for getting in touch. X

Cal66 profile image
Cal66

Hi Froggie

I hope today that you are feeling a little better. I understand how you are feeling, I have had a bad year also. I unfortunately, have been in 2 car accidents, where I ended up with severe whiplash. For your neck the best thing I used was a Freeze it spray and gentle exercise, some people prefer to use a heat pad & then exercise, if you have don't do gentle exercise you will end up with complications and permanent stiffness.

Forgot2mention profile image
Forgot2mention

Hi froggie 70. I used to suffer excruciating migraines to the point of not being able to move my head from one position, i would spend days in bed. I started to keep a diary of things that i had eaten that could trigger an attack and eventually found the cause as being dark chocolate. Since then i have not had an attack for years. Maybe look at your diet and see what foods could trigger it off., true it might not be migraine but no harm in trying 😍

Froggie70 profile image
Froggie70 in reply toForgot2mention

Hi Forgot2mention, I’m going to try that even from a flare point of view. I’ve long suspected that cola was a trigger for me and after my gastroenteritis the paramedic said not to use Dioralyte but try cola with sugar in it and at the moment I’m having the most awful flare. It could be coincidence. Thanks for your tip and for getting in touch. Take care. X

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