Feeling leaden

[Daniella7]

I often feel since I was diagnosed with PMR that my legs are like lead and it is extremely hard to move. (Different to just feeling stiff.). I know others have posted such symptoms stating ‘like walking through treacle’. etc. I just wondered how many people with PMR have experienced this. If it’s fairly common then I wonder why I cannot find any reference to such a situation in any of the literature about PMR!

[DorsetLady PMRGCAuk volunteer]

Just as likely to be effects of Pred as much as PMR - the drug can cause muscle weakness known as steroid -induced myopathy.

[Heron82 in reply to DorsetLady]

I walk daily and have been mindful of keeping my muscles working to avoid /lessen the effects of pred since I started my PMR journey 6 yrs ago. My legs feel leaden and heavy most days, my hips are stiff slowing my walking pace. Some days I struggle to walk / plod a mile with the dog, other days 3 miles is easy. But I potter about in the house and garden as sitting makes them worse. My feet and legs ache during the night disrupting sleep. Take heart that you aren’t alone.

Trying to slowly reduce to 9.5 mg again. Was set back by concussion after slipping and banging head, no memory of what happened for 30 mins afterwards. Didn’t loose consciousness . Now dealing with the bizarre effects of post concussion syndrome. Hey ho on we go.

[DorsetLady PMRGCAuk volunteer in reply to Heron82]

Did you mean to reply to me rather than poster, doesn’t matter she’ll see it anyway… sorry to hear about your fall…and have you been checked out by doctor?

[Heron82 in reply to DorsetLady]

Yes, ambulance was called as slipped in public place. After 2 hrs called GP friend to see if I could go home. Advised I go to A&E, spent 10 hrs there before being discharged after a CT scan. Flashing lights and floaters persist but have been checked by optometrist and not due to optic nerve or detached retina. Oh the joys.

[DorsetLady PMRGCAuk volunteer in reply to Heron82]

Oh flipping Nora- don’t need that on top of PMR - plus the embarrassment factor in public 😊

[PMRpro Ambassador]

You can't measure it - if you can't measure it, they don't think it is real!

[RachelJDH]

Yes. In the morning I am less weak and can stagger around the field with the dog before breakfast. After eating and taking steroids my legs are very heavy and difficult to lift up a step for most of the day. I did not know about steroid induced myopathy (thank you DL) but your symptoms sound like me.

[PMRpro Ambassador in reply to RachelJDH]

That sounds more like a reaction to pred rather than myopathy which wouldn't come and go like that. Have you ever tried taking the pred at night so you sleep through the worst of the effect?

[RachelJDH in reply to PMRpro]

I have been nervous about taking it at night as I sleep really badly since taking pred, with cramp and restless legs - not always but more often than not. When I have a good night I try to replicate what I did the night before - i.e. drinking lots, no sugar etc and of course it makes no difference. Should I change my timing suddenly or say over a week?

[PMRpro Ambassador in reply to RachelJDH]

You would just be taking it early the first time - shouldn't be a problem but could take a bit less maybe.

Have you tried magnesium for the cramps?

[RachelJDH in reply to PMRpro]

Yes I have but I find these - HIGH5 Zero Electrolyte Hydration Tablets which I get from Amazon - better and they have no sugar but make me drink more too. The cramp in my thigh is very tricky and worse if I do too much and carry heavy things (when I forget). I am going to get a footman I think to do these lifting jobs.

[DorsetLady PMRGCAuk volunteer in reply to RachelJDH]

I am going to get a footman I think to do these lifting jobs.

Send him to Dorset on his days off! 😊

Have you tried magnesium spray for thighs -same online shop as already mentioned!

[RachelJDH in reply to DorsetLady]

Oh interesting. Thank you.

[PMRpro Ambassador in reply to RachelJDH]

And he can come to northern Italy for his jollies ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

He’s going to be busy -and well travelled… 😊

[ellarowan]

my legs feel like concrete especially in the morning or after sitting. I’ve been on steroids for 3 1/2 years. Now at 2.5 mgs and just managing to ride the concrete stiffness!

[Broseley]

My husband told me I drag my feet when I walk. I hadn't realised. Maybe it explains why I keep tripping up, especially on the stairs!

[PMRnewbie2017]

My take on this problem is that it is multifaceted. I've been on Pred since Nov 2017. Now at 1.25/1mg with very good basal cortisol output. PMR almost certainly in remission but I struggle with fatigue, muscle pain, weakness and sore knees which respond to nightly doses of Ibuprofen and intermittent Paracetamol during the day,

Throughout PMR I managed to stay very active ....dog walking, mowing my huge lawn and even playing doubles tennis matches in the evening when I was on doses above 3mg. Since dropping lower and lower it's all going pear-shaped and possibly for some of the following reasons. I am 6 years older and my exercise quota has reduced because my muscles are weak and not "boosted" by Pred.. I sit a lot more now because my dog died and the incentive to go out is reduced especially in bad weather. I can strain a tendon or ligament very easily so don't push myself the way I did pre PMR. I took up swimming but the leg action for breast stroke has aggravated an old knee injury which won't heal. I have age induced muscle atrophy and loss of skin collagen. Because of the reduced activity I am much less supple and flexible. I'm sure my knees hurt because my quads and other major leg muscles are weak and do not support my knees any more, I used to be very fit and strong for my age.

So to sum up. Pred does play havoc with our muscles and tendons. PMR itself has an effect on our muscles. Our desire to keep going may be present but does not do us any favours in the long run so we have to chillax and rest. All this comes at a time in our lives when we are getting older and the phrase "Use it, or Lose it" is more relevant than it ever was. Of course older people can build muscle but it isn't easy and must be done in a controlled manner to avoid injury which would set us back even further!! Just keep going. Do what you can do, a little and often is better than over-doing it and then doing nothing while you recover. Once off Pred and with a fully functioning HPA axis I hope I will feel as if I'm 21 again, hahaha.

[PMRpro Ambassador in reply to PMRnewbie2017]

I do feel 21 - in my head. Trouble is, the body didn't get the memo ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Mine neither -darn it! 😉

[Daniella7]

Thanks for all the replies. Before I was diagnosed with PMR my legs felt heavy and I thought they were going to collapse! It was one of the first things I experienced then had morning stiffness and couldn’t sleep due to hurting when I lay down. For the first few months after blood tests and diagnosis I was fine on 15mg of prednisolone. I felt really sorry for others on this site who seemed to still suffer even on medication. However, once I started to reduce the pred it no longer seemed to work and I have to come off it due to severe side effects. I’m currently on 4.5mg. (From an increase at one point to 20mg). I recently had a dreadful femoral nerve pain for over 3 weeks and was in agony. I tried dihydrocodeine, Zapain, Tramadol and Eterocoxib but nothing took away the pain! Fortunately it eventually stopped and hasn’t returned to date! I wonder if it was part of PMR as it is stated that only steroids can relieve the pain of PMR and I have certainly found this to be true (at least initially). I suffer pain and stiffness now along with fatigue, dizziness etc but put much of it down to adrenal insufficiency due to my taper. I’m tapering 1mg a month which I know can be a bit too fast but my Dr and rheumatologist want me off the steroid asap and I agree. I’m having acupuncture for pain and inflammation but it seems to be slow to work. I can have a PET scan when I’m down to 2mg. I do carry out tasks at home but often so fatigued I can’t do much. I go shopping but can’t imagine walking a few miles! I’ve mowed my lawn, which is small and it used to take 20 mins and now it takes 2 hrs! Fingers crossed for remission!

[PMRpro Ambassador in reply to Daniella7]

What severe side effects have you experienced? And how did you start to reduce the dose? Looking at your profile, if you dropped from 20 to 10 in one go, no wonder you had problems. When you had the ECG done, were you having the palpitations feelings at the time? Did they offer a longterm monitor? An ECG is a snapshot - if you have an arrythmia then it will only show if it is happening during the ECG. An arrythmia is not necessarily due to pred - mine was caused by the autoimmune part of PMR and it is known to be more common in patients with PMR.

If acupunture works you will be the first we have come across!

[Daniella7 in reply to PMRpro]

I started on 15mg. It worked after a day and I had no pain or stiffness except from some pain and a little stiffness on the right side of my neck, along with a slight earache. I’d had problems with my neck for about a year anyway before diagnosis. Blood tests had revealed high inflammation prior to diagnosis of PMR. I stayed on 15mg for about 3 months as my neck continued to be uncomfortable. An x-ray showed some wear and tear but nothing else. I was experiencing my heart pounding but not racing on pred so my Dr told me to reduce to 10mg. I learned afterwards that this was too much of a reduction and I was extremely fatigued. Another Dr advised me to go back to 15mg and reduce by 1mg a month. I did so for a couple of months but I was still experiencing the pounding heart, sweats and feeling disorientated and my neck still hurt. Some pain and stiffness returned along with numbness and tingling in my toes which felt like they were swollen. I spoke to another Dr who was concerned about GCA so sent me to the hospital for blood, tests, checks etc. I spent 9 hours there and a blood test revealed high inflammation but they did not consider I had GCA. I was referred to a rheumatologist whom I saw about 2 weeks later. She looked me over and again felt I did not have GCA but should take 20mg of pred to get on top of the symptoms of PMR. I was still quite fit and active at this stage and an ECG had not revealed any issues. I had a scan for my swollen hands and feet but no Rheumatoid Arthritis was present.

I stayed on 20 mg for just under a month and felt Ok with regard to PMR but I couldn’t function mentally. Soon after I took my pred I would experience severe brain fog, sweats and the pounding heart. I was also getting moon face at this point. I went down to 15mg and the brain fog was not so bad but has continued so I felt I was having ‘outer body experience’ in that I felt disassociated from everything around me. I’ve reduced pred slowly since then and the pounding heart has stopped and I am more aware and alert but still not quite right. At a follow up with the rheumatologist a heart murmur was detected but a scan showed my heart is in good condition and any murmur is innocent.

From about 12.5 mg of pred all the pain and stiffness has returned and when my rheumatologist saw me walking so stiffly she felt I did not have PMR any more but a muscoskeletal disorder. I paid for physio and a sports massage but was told it was not muscoskeletal so they could not help. I turned to acupuncture in desperation. I’ve improved lately but not cured and am extremely tired which is probably due to the taper. If I’m still not feeling ok when down to 2mg the rheumatologist said I can have a PET scan. But if steroids aren’t good for me I don’t know what could help if it still shows PMR. Im feeling a little depressed but aware the taper doesn’t help and I’m monitoring the situation. My neck has never really improved but no one can offer a diagnosis. Even the physio didn’t help apart from releasing some of the tension. It hurts to turn my head and I wear a support around it when lying down. No cream (even steroid) helps. Tried massage too as well as heat and cold. No painkiller works either. My eyes have always felt blurry and strained with pred too but an eye test last week revealed no change in my eyesight since long before I was diagnosed. Am I an enigma? I worry I’m considered to be a hypochondriac. I have mentioned before that any medication I’ve taken has always caused quite extreme side effects. I once was given many years ago a mind- changing drug (without my knowledge) and ended up with extreme anxiety and trombone tongue! The Dr called a trainee to look at my contorted facial expressions as he had never seen anything like it before! It seems funny now but was very scary at the time! Sorry for long reply.

[PMRpro Ambassador in reply to Daniella7]

" she felt I did not have PMR any more but a muscoskeletal disorder."

Ye-es - PMR IS an MSK disorder ... And the reason your symptoms were back was probably because you were no longer on enough pred to manage the inflammation - as evidenced by the high levels.

You have experienced pred effects that aren't unusual and I suspect you probably have myofascial pain syndrome as part of your PMR - it can cause most of the effects you describe and UK physios are hopeless at working with it as it requires hands-on management and exercises are useless until they sort the spasmed muscles. The neck could well be sternocleidomastoid muscle tightness - it can be horrendous and affect the shoulders too! It took my physio several sessions over a few months to sort that out and it is still around at times.

Some people DO have horrid side effects but most can be managed if you are careful. The disocciated feeling has been mentioned by several people - and some of them found taking their pred dose before bed allowed them to sleep through the worst of it which seems to be as the pred reaches its peak in the blood and for a couple of hours afterwards. Splitting the dose so it never gets as high also works for some.

Have you tried eye drops for the eye problems? I find 2x daily drops, morning and evening, has worked a minor miracle although it has taken a few months to really get them back to normal.

You have been badly messed about - and it isn't uncommon for a disastrous reduction like yours to later create major problems managing the symptoms of the sort you are experiencing. Your rheumy claims it isn't PMR - the PET-CT will hopefully show if it is. There are a few on the forum whose rheumies were adamant it wasn't PMR so made them reduce the pred for a PET-CT. Not sure if the rheumies learned anything when it DID turn out to be PMR.