Things are getting really serious and I no longer am sure what's happening to me.
The past nine months have been one continuos flare with so much pain despite being on high doses of pred ( l am currently taking 15mg of pred)
For the first time I am even questioning that I have PMR as my symptoms don,t appear to be of a typicle sufferer.
To start with I don,t have any pain in my shoulders or arms, I do have pain in my neck which l have suffered from for some years.
What l do have however is enbearable pains from the waist down which started six months after the onset of GCA 20 months ago.
Starting with my lower back the pains are in my hips, thighs, knees and calves and is so bad that l am currently taking tramadol four times a day and l wake up most days between 4am and five because l am in too much pain to stay in bed.
What is worrying me at present is that my legs are getting thinner and quite weak and l have noticed that they sometimes tremble.
Bending down or crouching is quite impossible as the pain threshold is too high to tolerate, all in all l feel in a sorry state and sitting in a chair in pain and feverish is all too frequent these days.
I read such a lot on this forum about arm and shoulder pains which seem the norm but l am beginning to doubt that things will improve as they seem to be getting worse.
Sorry for the whinge but l am unable to see the Proffessor at the moment until after l have seen my cardiologist in February.
Any other atypical waist down sufferers out there as l feel pretty fed up at the moment and don,t feel very positive in myself.
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Classicmichael
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Michael - ask your GP to check your ankle pulses for a start.
A lady on one of the other forums told us recently that her father was diagnosed with PMR that was just in his legs and while pred helped a bit it didn't do a lot. The GP was totally uncooperative with sending him for further tests - but eventually he was diagnosed with peripheral arterial occlusive disease, basically blocked arteries supplying the legs. The vascular surgeon did a bypass and the "PMR" symptoms all went away. PAOD can be a long term consequence of GCA - plus having GCA doesn't excuse you from other problems. The wasting of your leg muscles could be due to that:
"PERIPHERAL arterial occlusive disease (PAOD) has an age-adjusted prevalence of 12%. Patients with PAOD often experience intermittent claudication that impairs their walking ability and curtails physical activities. Thus, PAOD patients lead a sedentary lifestyle that promotes disuse atrophy of the lower extremity muscles. This muscle wasting is compounded by the usual increase in body fat and loss of fat-free mass that occurs in normal aging. The reduction in muscle mass with aging is related to the concomitant decrease in maximal aerobic capacity."
I'm not saying it is - but it is a possibility and anyway I think you need to see a vascular surgeon for assessment. Does the leg pain at night improve if you hang your foot over the edge of the bed?
Hi PMRpro It seems that we may be thinking Along the same lines POAD is indeed something that I had suspected and claudintion of the arteries to the leg would make sense.
I haven,t tried hanging my leg over the bed but will see if that helps.
As you know I am seeing my cardiologist in February and I am going to ask him about claudication in my coronary arteries as I have gone from 2 blocked arteries to 4 in the space of 3 years (l now have four stents) but more worrying l have 3 further arteries that are partially blocked and will need stenting soon.
All l can say is that three years ago I had my second stent fitted and the other arteries were quite good but that was before l took calcium tablets and have been quite worried about the fast progress of my blocked arteries since taking calcium.
I strongly suspected that the calcium tablets may be the culprit and sure enough found a link to confirm that taking calcium does indeed contribute to claudication of the arteries and heart Attacks. I have suspended taking it until I have spoken to the consultant but I am sure you may be right and I will get the circulation in my legs checked out.
Mike, re your calcium worries, I presume you are having your calcium levels tested periodically to check they are within the normal range. Also, have you had a scan of your spine to ensure all is well there? I often think we are left to just get on with it rather than be offered the necessary investigative tests to rule out reasons for such problems as you are experiencing. I wish you well.
I will let you know how I get on PMRpro, thanks for your help
Hi Classicmichael,
If the pain is in your lower back and legs, gets worse after sitting and wakes you up in the second part of the night then check out Ankylosing Spondylitis. You are at an increased risk of cardiac problems with it as well and it can cause an increase in inflamatory markers ( ESR, CRP ). It also responds to high dose steroids but not low dose.
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