I’m asking what might be cause of terrific pains ... - PMRGCAuk

PMRGCAuk

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I’m asking what might be cause of terrific pains in the leg.

Fireleigh profile image
18 Replies

I think I’m on the mend from the PMR. But I am very trembly and have major pain in legs. Could it be lack of vitamin and mineral? I have consulted the doctor who had no suggestions. I read the instructions in the steroid pack and thought it might be a deficiency. I take magnesium and have occasional banana. Will the pains ease as my muscles get stronger? I have lost muscle mass and need to build up.

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Fireleigh profile image
Fireleigh
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18 Replies
SheffieldJane profile image
SheffieldJane

Do you take Calcium and Vit D ?

Vit B12 and Vit K2, might help. There are better nutrition experts on here than me. I don’t like the sound of “ terrific”. Pain is always a warning. Persist with your doctor. I have had aching uncomfortable legs with PMR but nothing I would categorise as severe. There are so many tests that doctors simply can’t do at the moment e.g X Ray, DEXA Scan MRI etc. Keep yourself in the forefront of his mind.

Daffodilia profile image
Daffodilia in reply to SheffieldJane

I had very bad pain in back of legs at start of PMR - are you sure it’s not that?

SheffieldJane profile image
SheffieldJane in reply to Daffodilia

It could be, if it is familiar to you. I had groin pain initially that effected my walking, getting in and out of the bath, bed, chairs. If that returned I know I would be in for a big flare. Thankfully it never has.

Fireleigh profile image
Fireleigh in reply to SheffieldJane

Yes, I think that’s the key. Persisting with the doctor. He is ex military and so expects a quick result. This virus doesn’t help. He has elderly parents too, so keeps a distance. I write to him now. Snail mail. He did send me for a scan which was negative. Did I say I take omeperol and a diuretic.? I take the omeperol on alternate days now to cut down and stopped the diuretic TEMPORARILY And now with the added bananas and magnesium I seem to be improving. I walked quite a lot yesterday and I feel good. I’ll order B12 and k2 from the Internet.

SheffieldJane profile image
SheffieldJane in reply to Fireleigh

I am glad you are improving. We are having to figure out a lot for ourselves these days. That’s why this forum is a God send.

Fireleigh profile image
Fireleigh in reply to SheffieldJane

Yes. It’s a godsend, this and the instructions on the packets. I’ve been re reading mine carefully in the light of what I pick up here.

PMRpro profile image
PMRproAmbassador in reply to Fireleigh

Why are you on a diuretic? Which is it? Some diuretics should not be used with pred as they lead to electrolyte imbalances - and that can cause muscle cramps because potassium and calcium may both become too low. If you are on diuretics you need regular blood tests.

If you were on the diuretic because of fluid retention after going on pred, it is better to cut salt and processed carbs in your diet - which has an added benefit in reducing the weight gain often seen with pred.

Fireleigh profile image
Fireleigh in reply to PMRpro

I’m taking bendrofumethiazide. Have been fo many years. Doc said he couldn’t change it because no substitute was recommended for people with a chest condition. He didn’t go into detail. I will be monitoring the bp. I have a good monitor. If I could get back walking, I know the bp would improve.

PMRpro profile image
PMRproAmbassador in reply to Fireleigh

In that case, once you were put on pred, he should be checking blood levels of sodium, potassium and calcium. Pred also makes you lose more magnesium and that causes cramps when it gets too low in the muscles although blood tests don't really show that as the blood level is the last to go down.

But I did ask what SORT of pain you are having and what makes it worse?

Fireleigh profile image
Fireleigh in reply to PMRpro

Began over a year ago with stabbing pain in the left ankle then seemed to be partly in bone/muscle and in the calf muscle. Mostly in the day. The three weeks ago at night as well in both legs. Woke me up. I had an ultra sound scan on left leg last summer but they couldn’t see anything wrong. So gave up asking as no one seemed to know. But then I was called to the pain clinic who diagnosed sciatica which Ithink I did have. I had some treatment and that improved leaving me with this different pain. It does seem to be getting better now with more magnesium and potassium. I hope it’s not a halo effect.

PMRpro profile image
PMRproAmbassador in reply to Fireleigh

Did they look for tendonitis? But no - that isn't what the halo effect is, that is something you see on ultrasound of an artery.

Hi fireleigh, you really need to discuss this with your Dr as it could be a range of issues. Have you had your electrolytes checked? Sodium, potassium etc. Does it happen all the time or after a particular activity or med? Did it start after a taper and could it be PMR giving you a kick. My legs feel like they are jelly, and like I ran a marathon when I flare and climbing stairs is hard. There are other things like low sodium that can cause cramps too. What dose of pred now? and how long have you had PMR? Try and get a ring back from Dr.

Fireleigh profile image
Fireleigh in reply to

Sodium was very low below threshold by one point. Doc seems to not want to do blood tests and I have to travel seven miles to get one done. Before we moved I was having several a year. Now it maybe two.

in reply to Fireleigh

Could be sodium then. It's hard to get up especially if on a 'flurazide

Fireleigh profile image
Fireleigh in reply to

Yes, think I will. Thank you.

PMRpro profile image
PMRproAmbassador

What sort of pains? Where? Does anything particular cause it? Tell us that and we can make relevant suggestions.

SnazzyD profile image
SnazzyD

Did your examine you in any way?

KSklar profile image
KSklar

Likewise here. Dr. treating for rheumatoid arthritis now. Methotrexate. Atop prednisone.

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