Hi all, I have had this pain now in the back of my head/skull that causes stiffness up either side of my neck into my head causing headaches and stiffness when turning my head. Its worse in the morning and causes a lot of pain throughout the day. I have had this now for over 2 years and tried acupuncture, chiropractics etc. and nothing works.
Is there a root cause for this? my GP appears to not know so I wonder how common these symptoms are.
Have you asked your dentist? I sometimes wake up with a stiff neck and headache and I am sure now that it's because I clench my jaw and sometimes grind my teeth on that side. No other cause can be found, but that explains a lot. It's worth considering when all else fails.
Thankyou. Interesting as my dentist did say I grind my teeth
A condition called myofascial pain syndrome can cause muscle tightening and spasm in the neck and shoulder area with referred pain into the head and arms.
It causes hard knots of muscle fibres in the shoulder muscles which are concentrations of cytokines, the same inflammatory substances that cause PMR. They can be dealt with either by local cortisone injections and/or manual mobilisation of these so-called trigger spots. I also found that Bowen therapy kept it all under control - I had an initial set of 3 sessions and then went every 6 months or so to keep it at bay. If it is just something acute like a fall or accident that causes it you may not need the long term help but PMR puts a lot of strain on our back muscles because we don't walk well and it often returns.
And as Annodomini says - well worth asking your dentist as the last time I had any trouble it was because of a wisdom tooth that has been erupting for the last 30 years and it was now affecting my bite. That was enough to cause neck, shoulder and back pain! Tooth removed - almost no more problems.
I have almost identical symptoms. I also have had the neck pain and stiffness for many years. I have improved reversing using only the mirrors so I will be able to drive a lorry soon Ha ha!!
The doctor sent me for physio, it did not touch it. I have just been for an MRI scan , results in 2 weeks. I asked for a cortisone injection, but my doc couldn't do it in the neck so I didn't get one . I take 6 to 8 parecetamol per day. It was relief when on 25mg of pred for pmr as all my aches vanished including osteo and this pain in the neck, but as I am reducing (9 mg now) these non pmr aches came back. I hope they will do something now as the constant headaches are draining, especially at work.
I am interested to now what your doctor says. I'll get back in 2 weeks when I know what mine says.
I to have been for every type of therapy including acupuncture and none have had the slightest impact. The suggestion above is now my next hopefull try at finding a solution.
Very helpful and also helpful to know I'm not alone with this. Shame Gps don't seem to take interest. Thank you all.
I have had spondylitis in my neck for many years before PMR. The symptoms are exactly as you have described. It took years to get a diagnosis, finally achieved with a private consultation and X-ray.
I have had an x-ray and according to my GP this showed only a general wear-and-tear diagnosis but this does not explain the pain I get in my neck and up into the back of my skull, ear pain and headaches constantly. If I try to tilt my head back or forward I get a lot of pain in my head and forehead and the same from side to side. I also get what appears to be described as 'grinding' in my lower neck area. I have visited many forms of therapists at no avail. The painkillers I take daily have started causing bowl problems so I have to leave them off for a while and suffer the in-comfort and headaches as I don't know exactly what else to do.
How and who did you contact for the private consultation as I am now looking at this option as my GP appears to not be able to help.
I live in Milton Keynes so would like someone in my area if possible. Sandie
I was receiving treatment from an osteopath at the time who referred me to a local private clinic with X-ray facilities. This was over 20 years ago and on the south coast so I am afraid no help to you. If you Google Private X-ray Milton Keynes you may some help. I do hope you get some relief, it is so miserable and debilitating especially with PMR on top!
HI i also had very stiff neck (before i knew i had PMR) when it was at worst couldn't turn my head or drop my neck i took lots of pain killer.The thing that did help a lot was a new pillow , I bought a feather pillow medium firmness from John Lewis it was expensive but worth it.
Hope things get better soon 
Sand1e, if after you have pursued the problem with your dentist about the possibility of your tooth grinding being the cause of your pain, as suggested by Annodomini, you still fail to find an answer, have you at least tried wearing a surgical collar for brief periods to see if that helps, or a large heated pad on your neck, or a TENS machine. I tried all three during my early days with GCA when my head felt like a lead weight on my neck. I got the most benefit from the collar and the heated pad.
Hi Sadie
I have had aches and pains in joints for almost 3 years. I then developed pain in my jaw, face, cheekbones and wanted to grip my teeth. I was referred to a specialist and told I had Temporamandbuluar Joint Problems, and was given a plastic guard to wear on my top teeth at night, grinding apparently being the culprit. No pain relief helped much. This didn't work and I was then prescribed a bottom guard - no help there. This was two years in treatment with no improvement. (5 years in total)
My joints got worse and with raised blood ESR levels was referred to a Rheumatologist who diagnosed PRM with TA (or GCA). Now on steroids, all joint pain went with 48 hours, the TA (GCA) took over 3 weeks on high dose.
If it were just PRM I would not take the steroids, the side effects are so debilitating - however the risks of TA not treated with regard to my sight, means I have not choice, for safety need to take the steroids.
I have many of the symptoms mentioned, but not all - so this I believe is individual to each of us, the Moon Face seems pretty consistent though!
I wish you well on your journey to find the cause of your problem.
Lesley
Wow it all sounds very scary. I hope my problems don't develop to such extremes. What's really surprised me is how many of us are suffering and yet medically GPs seem to have so little to offer or knowledge of the problems. Sandie
Hi Sand1e, I am suffering exactly the same symptoms as you, including the grinding when I turn my head. I have been having Osteopath treatment until she recommended my Doc does a PMR test, sure enough it came back high at 67. She immediately put me on prednisolone 15mg two weeks ago and I feel much better although the skull/neck pain remains but not as bad. I am expecting the doc to call me on Wednesday after treatment for 2 weeks so it will be interesting to see what she says as I don't want to stay on steroids as I have afib too! The least meds the better, but the neck and skull pain is awful.I am at the dentist tomorrow and I know I clench my jaw/grind teeth so I think this is a cause too
Went to the GP this morning to get blood and MRI results. The MRI showed nothing !! all normal, but I don't know if arthritis can be seen on a MRI scan. The blood results much as last time. ESR still high , but did not tell me the number and although I asked for results to be printed, this one and the CRP appear to have been missed. My white blood count is still raised. 14.76. She has given me antibiotics and I've to go back in 2 weeks if neck ache and headache not better. Oh Dear.
Sand 1 e. I have polymyalgia and GCA. I have morning pain and stiffness of neck and shoulders. I was also diagnosed with Cervical Spondylitis. It seems to me this may be what you have as I have all the crunching sound when moving my head and also the nasty headache at the back of my skull and top of head. my pain disappears as soon as I get up and walk about.
Have replied re neck pain in another thread after searching here. Came across this thread and wanted to agree with PMRpro regarding Bowen therapy. In previous years I have had this from my physio for neck pain and it has been brilliant....I am going to ask for referral tomorrow when I see my Doctor.
Neck pain with headaches
Nagging neck pain returns
Broken record head pain 
Persistent neck pain NOT pmr.
