1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Pain in base of skull

Posted , 13 users are following.

jane03457
jane03457

Hi I have had PMR for about nine years now & have been stable on 5 mg of Pred for many years not able to reduce further.

about six months ago I started to have bad neck pain & thought it a skeletal problem so have been seeing an Osteopath but to no avail.

the pain is now very much in the base of my skull & I'm wondering if this is PMR ...how can I tell?

The pain is constant, should I increase steroids, how can I know what the pain is truly caused by??!!

any help appreciated,thank you,

Jane 

0 likes, 8 replies

8 Replies

  • barbara73592
    barbara73592 jane03457

    Posted

    Hello Jane,

    I have suffered from PMR now for 2.5 years,and so far cannot get down below 7mg. Several weeks ago once again having reached 7mg on the dsns method and thinking that just maybe this time I can get lower I flared again. I had excruciating pain in neck ,so bad that I could not sleep as no matter what way I lay down it hurt! So,no sleep,shoulders were also sore,tops of arms,and really bad stab pains going up from base of skull. Made an appointment with GP ( not due to see rheumatologist until December, when I know if I am not at 5 mg or below he wants me on methotrexate) GP told me to go back to 15mg for a week and then reduce by 1mg per week. After 3 days neck pain,headaches,disappeared . Shoulders pain still comes and goes but not as bad that I can't put up with it so I am now reducing slowly again. Don't know if this is the same pain you are experiencing but in any case I think a trip to your GP would be best to put your mind at rest.

    • EileenH
      EileenH barbara73592

      Posted

      A rheumatologist who won't accept that 7mg works and wants to add mtx to the mix doesn't really understand the nature of the beast. 7mg is a physiological dose - and probably associated with fewer side effects than adding in mtx with its potential problems either short ot longterm. MY rheumy wanted to add mtx in the hope of getting to 7mg - but the month I took it was very unpleasant. The fatigue was worse than anything I ever have had in 14 years of PMR plus my hair fell out in clumps, I itched all over, I bruised - in fact the so-called pred effects were all worse or reappeared including sweats. The only thing I can say is I had no nausea! So we agreed on 8 or 9mg as required ...

    • barbara73592
      barbara73592 EileenH

      Posted

      Thanks for your input Eileen re the mtx I really do not want to go on it. If I can get back to the 7mg again without any further flares,I think I will be refusing. I have other medical disorders I take tablets for plus tummy problems so do not want to upset anything else.
    • margaret53690
      margaret53690 EileenH

      Posted

      14 years?  Well golly, i was told that PMR could last a year, perhaps two, or maybe a lifetime. I stopped deluding myself about the 2 years expectancy after no change after 1 year. Every time I drop to 7.5 it flares back up then as I was hoping it had gone into remission, I get depressed!  

       

    • EileenH
      EileenH margaret53690

      Posted

      I just think of it as like BP - as long as you keep taking the tablets you are fine... I've given up expecting it to go into remission so just get on with living with it.

  • EileenH
    EileenH jane03457

    Posted

    Have you spoken to your rheumatologist? Or at least your GP? Have you had x-rays or other imaging to rule out something "structural"? Those are the places to start. You can't always blame pain in PMR - and really, that sounds as if there may be something else going on.

    • jane03457
      jane03457 EileenH

      Posted

      Thank you Eileen as always...yes you are right, have made an appointed for GP, so hopefully we can dismiss relevant areas to see what the true problem is, Jane
  • jones10939
    jones10939 jane03457

    Posted

    Is the pain in the bae of the skull the same in characteristics as the neck pain.

    How is your eyesight and when did you last see an optician?

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.