Paget's Disease of Bone

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patricia42
patricia42 Member Posts: 2
edited 26. Jan 2009, 06:02 in Chat to our Helpline Team archive
I have been diagnosed with arthritis of the spine; I have a number of osteophytes which are causing the sciatic, and other nerves to be squeezed and this causes a lot of pain at times. My query relates to the type and frequency of pain I have. At present [touch wood] I am fairly pain free except when walking. From time to time, several times, a year I have periods of intense, excrutiating pain down the front of my shins. This is always at night, whilst lying relaxed in bed. Despite approaching both GPs and consultants no-one can explain this pain - nor offer satisfactory pain relief. On researching this particular pain I came across Paget's disease of Bone and, together with some other facts, thought this might be my problem. Apparently looking back at X rays I had a couple of years ago, there are no "hot" spots so it was concluded that this is not my problem. I also began to have pain around the temple some years ago, had to resort to contact lens at work because of the discomfort of specs. and do suffer frequent tight head aches. This is another symptom, plus I have a heriditory factor. I wanted to ask an expert - if X rays can be misinterpreted for this disease, as I believe blood tests do not always reveal it. Also, do the symptoms come and go with irregular fequency and intensity.
Alternately, is the extreme pain in my shins, a further symptom of arthritis of the spine? Is it, as has been suggested, referred pain?
Are there any other members who have similar problems?

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  • helpline_team
    helpline_team Posts: 3,490
    edited 30. Nov -1, 00:00
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    Hi Patricia
    It can be frustrating to have symptoms which no-one can identify but you do need to get a proper diagnosis. Pagets Disease is usually seen on x-ray but if there is some doubt then an isotope bone scan can be done to confirm or rule out the condition. The following link will get you to the organisation which deals specifically with Pagets and they have a helpline that can give you further information.
    http://www.paget.org.uk/
    It is possible to get referred pain from osteoarthritis in the spine especially if osteophytes are pressing on nerves at times which might explain the intermittent nature of these pains.
    Best wishes
    Val
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