GCA since 2010, I have feeling of wearing a lead helmet and pain in my head worse when lying down

[tomasina]

My GP and Rheumatologist think this is either all in my mind or referred pain from my neck. I really do not think they are correct as I have only had it since my diagnosis and have to sleep sitting up to relieve pressure on my head.

[polkadotcom]

One of my first symptoms some 15+ years ago was a painful scalp. I'm not sure if this is quite what you mean, but I felt it as a really bad ache and I learned very early on not to touch - it was just too painful. Sleeping became something of a problem as I cannot sleep sitting up but was unable to put my head down on the pillow, so tended to finally drop off to sleep in a face-down position. No painkiller ever made had any impression on that pain.

I don't believe that my head pain was referred as not only could I not touch the sore places, I could feel the heat coming from them just by putting my hand over my head.

I was lucky enough to be referred to a physio who asked if I would like to try acupuncture. I did like (if she had told me I could benefit from being walked all over I would have done it as I was that desperate) and had several sessions which calmed it down tremendously. She also told me that unless I could loosen up the scalp muscles myself the benefit of the treatment wouldn't last long as tension would join in to make it worse. So I learned to massage my head all over beginning very gently at the back of the head/nape area and working my way round and over my head to reduce the tension and therefore some of the pain I had. I was able to identify trigger spots quite quickly and it did make a difference to sleeping!

I still do it now if I get the tight feeling again and always give myself a good massage when washing my hair. I have also learned that neck and shoulder exercises help a good deal and still do those daily.

I hope this helps and if I can help more, please just ask.

[jinasc in reply to polkadotcom]

From our Tips and Tricks List.

If your scalp hurts, run your fingers upwards through your hair two or three times.

Each individual hair has a muscle attached to it, think how sometimes the hairs on your arm stand up.

As PMR is muscular, the hair muscles can ache.   The simple action of running your fingers upwards and gently tugging your hair can relieve some scalp pain.

 

This tip also works for headaches.

If you have a local hairdresser who offers Shiatsu hair washing, get them to show you how to do it.

[watling in reply to polkadotcom]

i have had GCA and polymyalgia for over two years and only the last two months bad head and neck pain i have had to up my steroids again but do not want to go any higher 7mg at the moment my neck feels as though there are two big steel planks up the back of it and my head is painful the only thingthat gives it any relief is diazapan i do not want toup steroids again if i can help it

[tomasina]

Thank you all for your comments re head pain and scalp tenderness. I will try the massage of my head. I have had acupuncture and it did not help, I continued to have the tenderness and strange feeling on/in my head, which is not a headache, which I rarely get, but when I do it is definitely a different pain. I have got down to 5mg. Prednisolone per day and am now reducing 1mg. two-monthly. Last year I got down to zero, but that only lasted three months before I had a flare up. Tomasina