Severe pains in bones and muscles

Diagnosed with APR 4 years ago have very good team in Dublin. However for past 9 weeks suffering very badly with pains in my lung, bones and muscles. Something I have never had in 4 years. So much so I am lucky if I get an hours sleep a night. I am in all day pain even taking painkillers. Anyone else suffer like this. Back with Prof. Healy next week.


7 Replies

  • Hello, I am pleased you have a diagnosis, I am also relieved that you have an up and coming appointment next week, often people with Hughes Syndrome, can have other conditions, the other two which are common are Sjogrens and also a Thyroid problem, unfortunately Thyroid can be missed due to the very narrow and unreliable TSH test. I did mine privately and did a whole rang of tests which showed that I had a slow Thyroid - Hypothyroidism. Also it is vital that your vitamin D levels are looked at - it should sit at least at 75! Also your iron and B12, low vitamin D and other low levels as mentioned above can cause wide spread body pain. MaryF

  • Hi there.

    I agree with my colleague, Mary.


  • I suffered with severe pain in both legs and also chest/lungs for months, I started to think there was something seriously wrong, my legs hurt so badly I couldn't stand longer than 10 mins and I even bought a stool so I could sit to do the ironing! couldn't sleep at night with the pain and painkillers didn't even touch it. Then I discovered quite accidentally that I had vitamin D deficiency. I couldn't believe something so simple could make you feel so ill. I would ask for levels to be checked if I were you, just as a starting point.

  • Thank u so much I was begging to panic because of Pain. Back to Consultant on Tuesday for all blood results. Thanks again.

  • Hi, I have been suffering with the same for months now, but I do not have a good specialist yet. I spent hours yesterday having all my joints x-rayed and whole body bone scans. I see a Rheumatologist on Tues for the results as my blood tests showed elevated rheumatoid factor. Your post reminded me about the Vitamin D, must rush out now and give it a try. Thanks.

  • Thank u and good luck with results.

  • I have pain the same way. D-vitamin will help a litle and make you fell better.

    If i have bad pain i take kodipar, they are very god making me relax so i can sleep.

    Best of luck 😊

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