I have had PMR for a little over 2 years, and it has always been in the classic areas - neck, shoulders, hips, buttocks and thighs. Over the last few days have had severe pain in both calfs, which coincided with reducing Pred from 10mgs to 9mgs. It is making it more difficult than usual climbing stairs etc. I am due to have am MRA of the head on 31/12/13 as GCA type symptoms continue, so don't want to increase Pred again as it will mask the inflammation they are hoping to find on scan. My energy levels have also plummeted to how they were early on in the journey of PMR. Work is very demanding at the moment which is possibly adding to the problem, I work on a very busy ward which is very stressful at the moment due to bed pressures. Was hoping to enjoy Christmas this year, but with these pain and tiredness it is looking unlikely.
Hope everyone else is doing well, wish you all a merry Christmas and hope everyone's health turns a corner in 2014. Cheers Runrig
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Runrig01
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Is it claudication pain? i.e. does it happen when you are walking, go away when you stop for a while and then return when you start walking again? If so - that is a sign of GCA too as could be the increase in the fatigue and unwellness. And of course - stress of any sort doesn't help.
Hi PMRPRO, no it's not claudication pain. I can walk on the level with little pain, but when I try to walk up inclines or stairs it is painful. Both calf muscles are tender to touch, and cannot cross legs due to tenderness. They are not swollen and are definitely not DVTs. Can PMR affect calfs? Have had days at work where I become tearful due to the exhaustion, feels like someone has removed my batteries. The NHS do not tolerate sickness and you can be quickly on a disciplinary so trying hard to keep,going. I am due to start Azathiprine very soon, so perhaps that will help. Thanks for your reply, cheers Runrig
I can relate to that inability to go upwards without pain. I was fine on the flat as well, but even a small incline gave me real pain and I had to take it slowly.
I know I was never given a real explanation (it was brushed aside as 'muscle weakness) and eventually it seemed to disappear of its own accord. Thinking about it, in fact muscle weakness could be right, both Pred and PMR play havoc with the muscles. I did find calf stretches very useful, even if I couldn't do a full stretch.
Hi - calf pain was one of the symptoms I had when I was diagnosed with GCA. My consultant was in no doubt that it was linked, and put me on 80mg pred straight away. It soon went after that.
Hi Runrig,
When I was hospitalised with jaw pain, weight loss and dizziness I developed severe pain in one of my calf's, so much so that I considered a DVT but there was no swelling.
Since then I have had intermitent calf pain which is worse at night and when I am out for my daily walk, amitriptyline has helped the night pain. As you know I haven't been given a dagnosis of either PMR or GCA!
I know what wards are like in the winter with the pressure on beds, this with the reduction in pred and general Xmas mayhem will certainly be contributing to your pain and symptoms.
I have been pleasantly surprised at my managers and HR's response to my absence from work. Occ health have been fab as well and I am gearing up for a January return.
You have put up with your symptoms and the uncertainty around the diagnosis for so long that I am not surprised you are feeling this way. What advice would you give to a patient in similar circumstances?
Be kind to yourself, us nurses are only human although our bosses can expect us to be superhuman most of the time.
I truly hope that the MRA will give you some answers and end the uncertainty. Here's hoping that 2014 will be a better year.
Sounds to me like you are overdoing it. Hope you get relief with time off over Christmas. Put you feet up and let everyone else do the running. With this PMR we sometimes forget we are ILL! All best wishes for a return to better times.
Thanks 55grove for your kind words. I'm sure we're all guilty of overdoing it at this time of year. I'm off Christmas Day but working the rest of Xmas and new year. I do have a weeks holiday on 6th Jan, but I'm travelling to Glasgow to give my mum time off as full time carer. She looks after my dad who has severe Parkinson's, and he has no sense of balance, so is very difficult to transfer from bed to wheelchair etc. I plan to take over as carer and allow her time to go out and meet friends. Will probably need another holiday after this, LOL. X
Hello Runrig01. Yes, I get a lot of calf & foot pains, muscle spasms - as well as the other usual ones with PMR/GCA also very tired. I find they are not so bad on a lower dose of steroids eg 10mg as they were on the very high doses, though. I hope you will find things improve, its a slow job, isn't it? At least I am retired so don't have the pressure of work anymore, I have the luxury of being able to stop when too tired! I sympathise with you & wish you well.
Thanks for your kind words. My calf pain came on suddenly 4 days ago, I'm currently on 9mgs. Some days I wonder if I will be able to continue till retirement. I am lucky that being in the NHS I can retire at 55, still another 6.5 yr away. If I have to continue till my late 60s I can picture me with a Zimmer frame giving out bedpans to my patients, LOL. Do feel a bit better tonight after having 2 days off, been a whole since I had 2 together. Wish you better health in 2014, take care, Runrig x
I had the calf pain exactly as described, and spreading down from buttock, particularly on any slight degree of incline, and was very worried about GCA as I wasn't on steroids. GP said no, most likely muscle damage with PMR. Since then have been having myofacial massage once a month, as also may be displaced pain from sciatic nerve. Now in remission from PMR and calf pain steadily improving. Hope this helps!
Hi MoiraCT, I have had sciatica many times due to back injury from lifting, this is very different. It is actually a little better today as is the exhaustion, think I've maybe been overdoing things. Need to learn to listen to my body. Glad to hear you are now in remission, hope things continue to improve for you in 2014. Cheers Runrig x
Hi, sad we have to suffer like this. I am struggling around bent over with back/hip pains and breathing problems. Trying to get back to 10mg. It was a bit better then, but going into hospital with a kidney infection, I was put back up to 20mg. Trying to come down 1 mg a week. I had a poor christmas, really struggles to do things. Good job I have a great partner and daughter who did it all. Hope 2014 is better for us all
If you had a real flare reducing at 1mg/week is too fast - take 2 weeks between drops. The idea of the pred is to MANAGE the symptoms. If you have symptoms, your aren't managing them!
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