Flare or Something Else?

[FSP25]

Does anyone experience leg pain with Polymyalgia? I’ve had the condition for 8 years but haven’t had this kind of pain before. It’s affecting my hips, thighs and legs down to my ankles. I’m on 2mg of Pred, which I’ve been on for a couple of years and am wondering whether to increase? To complicate things I also have Spinal Stenosis and Osteoarthritis. My inflammatory markers are usually ok, probably because of the Pred so I don’t think a blood test would help. Just wondering if anyone else has had similar pain? Thank you.

[PMRpro Ambassador]

Both legs? What sort of pain? Sharp as in sciatica or achy as in muscular? Does anything relieve it, make it worse? Are you sure it isn't the spinal stenosis?

[FSP25 in reply to PMRpro]

Good Morning PMRpro and thank you for your prompt reply. No I’m not sure. It could be due to the Spinal Stenosis. I made the decision during lockdown not to go ahead with surgery. During the day it’s the kind of pain and stiffness that I normally have which I think is due to Arthritis although it has been more intense and I did think about psyciatica. Ive not really had much pain in the night previously but I’m now waking up frequently with an aching/throbbing pain starting in the hips and going down to the ankles. The right leg is worse than the left. I have to move position to get any relief. A wheat bag also helps. When you have more than one condition that causes pain, it’s difficult to ascertain which one is playing up. I’m reluctant to increase the Pred as I was hoping to aim for zero this year. I’m taking Cocodamol and Paracetamol, alternately.

[PMRpro Ambassador in reply to FSP25]

Depends on how much you would have to increase the pred - a mg or two more probably has fewer long term adverse affects as taking those pain-killers. You are being careful about the amount of paracetamol you are taking I hope? Cocodamol contains paracetamol so it is very easy to get above the 3000mg/day recommended for our age group.

[FSP25 in reply to PMRpro]

Thank you for your advice and experience. If things are no better in the morning I’ll try a small increase in Pred. I hadn’t realised it was safer than the painkillers! Thank you for the warning, I do stay within the limits of the painkillers.

[PMRpro Ambassador in reply to FSP25]

That's my personal opinion but I do know several experienced doctors who agree. I have a friend who had PM and when she was down to a low dose of pred her GP decided the pain she had was osteoarthritis rather than PMR (it wasn't as it happened though the PMR has gone now) and persuaded her to take paracetamol instead. A few weeks later she had routine bloods done - and the GP rang in a panic, her liver values were sky high. She was sent for an emergency ultrasound - thankfully everything perfectly OK. The raised blood values were due to the paracetamol! They are beginning to realise that it too isn't very good for older patients!

[FSP25 in reply to PMRpro]

Thank you for sharing your friend’s experience. That was a surprise as you are always advised by the medical profession that paracetamol is the safest of the painkilllers.

[PMRpro Ambassador in reply to FSP25]

That's right - I think it was an Australian study that realised it wasn't as safe as they thought, Doesn't do anything for me so I rarely take it - had it as an infusion once after surgery - now THAT is another thing altogether, as good as morphine for moderate pain!

[FSP25 in reply to PMRpro]

That’s really interesting. I’ve actually had Morphine to take orally, against the wishes of my GP, but after pleading with her she relented, but it didn’t help me at the time. I made a decision and I’ve taken an additional 3mg of Pred which I’ll continue for a few days to see if it helps. Here’s hoping. Just been watching the tennis for over 4 hours so am out for a walk to get my body moving again. Great match though so worth the extra stiffness. Thank you again. Best wishes.

[PMRpro Ambassador in reply to FSP25]

Me too! I was all set to go at the end of the 3rd set - and we now all know what happened then!! So by the time I did go the sun was about to disappear behind the mountain - but it was still not cold despite the howling gale so I was a good girl and did the full village circumnavigation! I think I feel better for it ...

[FSP25 in reply to PMRpro]

Well done you. I’m back home now before Storm Corrie arrives.

[PMRpro Ambassador in reply to FSP25]

Just keep her to yourselves!!! Malik is meant to reach the north side of the ALps but not us - I like it that way

[FSP25 in reply to PMRpro]

🤣 we’ll try. Just for you.

[Offsideinzaghi]

I had pain in my thighs when I was originally diagnosed with PMR. Hamstrings were that tight you could have played a tune. Recently when I was down at 5mg had slight pain behind both knees/lower thighs. Now back up at 8mg as pain has increased.

[FSP25 in reply to Offsideinzaghi]

Hope the 8mg works for you. I’ve just increased my dose from 2 to 5 mg to see if it helps but the pain might be due to one of my other conditions. It’s confusing. Thank you for responding and good luck on the increased dose.

[Janstr]

My PMR started with pain in my thigh which after an MRI was diagnosed as hip bursitis, which is also a side effect of PMR

[FSP25 in reply to Janstr]

Thank you for your reply. I’ve been surprised by how many people have been affected in a similar way as I am. It’s useful to know about your diagnosis for next time for next time I have contact with my

[Iamfedup in reply to FSP25]

Mine too started in my thighs before going all over my body but my thighs always remained the most painful guess it because they are such large muscles

[FSP25 in reply to Iamfedup]

It’s the first time my legs have been as bad as this and after a short increase in Pred which hasn’t helped, I’m now thinking it’s one of my other problems, possibly the Spinal Stenosis or a bout of sciatica. Thank you for replying.

[Libs66]

I have been diagnosed with pm, I have the arthritis and spinal stenosis like you. Since last July left leg has been so bad I now can’t walk. So many pains in leg down to ankle. I have been on Pred for 3 years, started on 15mg. I am now on 2 mg and told I was mis- diagnosed with pm. I am listed for a replacement hip. It’s very difficult as you say, when having multi ailments what is causing the pain. I think it sounds like your hip is getting worse. As for painkillers I have Co- codamol 30/500 which helps but still in pain. They won’t let me have any increase because of side affects. Good luck, but I would get advice before increasing Pred.

[FSP25 in reply to Libs66]

I can fully appreciate how you feel and I’m sorry to hear your severe leg pain has meant you can’t walk. I take the same strength Cocodamol as yourself and alternate it with Paracetamol, without exceeding the recommended dose, also because of side effects. I hope your wait for a hip replacement isn’t too long. The current backlog for surgery is really worrying. I’ve been on Pred for 8 years and started off on a high dose like you. I’ve been self-managing my dose for several years after reading about the DSNS reduction method on this forum. I showed it to my GP who hadn’t heard of it but was ok with me using it. I did get to zero once for a short time but then had a flare. GPs tend to have a standard response. I’ve learnt practically everything about PMR from this site. Hope your pain eases for you very soon.

[Boss302Fan]

Not like yours. Mine was limited to my hamstrings on both legs. The pain was 10/10 when my wife took me to the ER. I came close to fainting and going into shock, BP was 91/64 and at the hospital I went into severe chills and uncontrolled shakes that they wrapped me in heated blankets. Everytime I had a flare that is where it was. Driving long distances was quite uncomfortable. Putting my heated seats on medium helped alleviate some of the discomfort.

[FSP25 in reply to Boss302Fan]

Sorry to hear about your awful experience and hope you’re ok now. I find driving can be uncomfortable so I stick to short journeys now. I use my heated seat all the time. It does have a soothing effect on both my lower back and thighs. Thank you for your response.

[Broseley in reply to FSP25]

Modern cars have such uncomfortable seats. Mine has sports seats which dig into my side when you go round a roundabout. My ribs are continually bruised. For the sciatica I use an inflatable cushion which works wonders.

[Pixix]

My leg pain is dreadful, & has been for weeks. But I’ve had it like this before (well, not quite as bad) & was diagnosed with sciatica. Not sure if you’ve had it? Maybe worth googling the symptoms to see if they fit. I don’t increase my pred as that won’t help at all, but heat soothes it…warm baths, blankets, heated one in bed, gentle exercise, etc! Just a thought, especially as it’s winter!

[FSP25 in reply to Pixix]

Apologies for my late response. I increased my Pred to 5mg but I intend to taper down again from tomorrow as it’s not doing the trick. I use heated wheat bags on a daily basis and also walk almost every day. I also swim once a week. I agree it could be sciatica and I’m already taking pain killers for my Arthritis and Spinal Stenois. I guess I’ll just have to hope it improves soon. Thank you for your tips.

[DorsetLady PMRGCAuk volunteer in reply to FSP25]

How long have you given the increase to work? May need more than just a few days…But as you say, may be other things.

[FSP25 in reply to DorsetLady]

I’m giving it 7 days and then reducing by 1mg per week until I’m back at 2mg. I’m now thinking it’s the Spinal Stenosis as PMRPRO suggested a few days ago. It’s confusing when there is more than 1 condition to consider. Thank you for you triply. I hope you’re keeping well.

[DorsetLady PMRGCAuk volunteer in reply to FSP25]

Okay - well as you say with no significant relief it’s likely to be your OA/Spinal Stenosis. It is difficult when you have other things going on as well.

I have OA as well (but who doesn’t? ) and lumbar spondylitis (fortunately not severe) but generally feeling good, thank you 😊

[Pixix in reply to FSP25]

In my case, the weather/temperature affect it a lot. I’ve never had sciatica in the summer. Sadly my tramadol & Paracetamol don’t help, but I keep active & walk often in the forest we live in. Good luck!

[FSP25 in reply to Pixix]

Living in a forest sounds brilliant. I do walk regularly at my own pace in green spaces such as the local country park etc. I got some walking poles for Christmas and they are better than just a single walking stick. I agree the weather can play a part too. Thank you for your reply and enjoy your forest walks.

[Pixix in reply to FSP25]

Just checked you’re in the UK! I live in the New Forest National Park on the south coast. It’s wonderful, with unlimited, & often flat, walking. Um, I’ve got some poles somewhere, must dig them out as using single stick atm. Thanks for reminding me!

[FSP25 in reply to Pixix]

Lucky you. We’ve spent many happy holidays in the New Forest in years gone by. Give the poles a try. Mine aren’t the Nordic ones which are straight. They have T-shaped handles like a walking stick. I felt they were more suitable for me.

[Pixix in reply to FSP25]

Thanks! It was a dream come true! But we had to downsize a lot to afford it. We have woods on two sides of the cottage, a garden larger than we really wanted, but just love living here. Good to know you had good holiday times here. Um, very interesting, will look up those poles, sounds better to me…I just have the old ones…LOL, one we actually found on a mountainside in Switzerland at about 10,000ft!! Happy hiking days!

[FSP25 in reply to Pixix]

I got mine from Mountain Warehouse. Not sure if you have those stores in your area but I’m sure other outdoor shops will have them or of course Amazon. I’m sure your downsize was worth it. It’s a beautiful are. Hope you stay fit and well.

[Pixix in reply to FSP25]

Thanks! I can buy online from Mountain warehouse, & yes, our downsize was somewhat planned, but this area is very expensive indeed. But oh so lovely to live here. Hope your pain settles down. My doctor is due to phone me this week, so I will see if he thinks I still have sciatica…or something else! So much fun! Take care!

[FSP25 in reply to Pixix]

Hope you get your call from the doctor and he comes up with some answers.

[Pixix in reply to FSP25]

Thanks…you, too!

[Doraflora]

When I was first diagnosed with PMR almost 2 years ago I had the pain down my thighs, but thankfully that seems to have completely gone. However, I have been suffering lately with pain to one side of my lower back, but it really feels a muscular pain, which I’ve put down to our temporary sofa (waiting 6 months for thr new one), or our bed. I’m so reluctant to increase my Pred from 4mg as it’s taken me a long time to arrive here.

I might bite the bullet & contact my GP - or a chiropractor.

Or maybe I should just accept the ageing process (the big 7 this year🙄). But it’s just a number....

[PMRpro Ambassador in reply to Doraflora]

Are you OK with a single dose of ibuprofen? Try taking a single 800mg dose (it is called a flooding dose) and then sit with a heat pad or hot water bottle over the place that hurts if it is the right place for muscle. It might take a while - I need several hours and sometimes repeated on a couple of days.

Or it could be sacroiliac pain - that is about where the baby's dimples are are few inches below your waist. Heat MIGHT help that as it could be due to a spasmed muscle but if it is sacroiliitis which is inflammation of the sacroiliac joint, ice might be better. Or alternating hot and cold.

[Doraflora in reply to PMRpro]

Thanks, PMRpro. I have had this problem before, but it’s sticking with me for much longer this time.

I’ll give your regime a go & keep on with my exercises.

Thanks 😀

[phebamom]

Have your doctors checked your mineral levels with your blood work? Calcium, magnesium, potassium. Imbalances and deficiencies can cause leg pain, I am on Prevacid, a proton pump inhibitor. I need to take oral magnesium pills because proton pump inhibitors deplete magnesium. My blood pressure medicine wreaks havoc with my potassium levels. I find if I take calcium in my food I am okay, Calcium supplements cause foot pain. Go figure. Anyway, give some thought to deficiencies/ or in the case of potassium, too much, if you have been on medications for a long time.

[FSP25 in reply to phebamom]

Thank you for that information. It’s not something I had thought about. I’ll have a look at my last blood test results to see what was included.