Walking? What's that?

[ChrisinNam]

For most of my life I've been very fit and healthy (sound familiar?). Then PMR struck in September 2020. The Pred took away the dreadful pain within a few hours, and for a while I was pretty well OK. I was walking three miles a day, every day. Until about fifteen or so months ago, when the dreaded deathly fatigue began. Over the next few months my walking ability reduced and reduced until I can now just about walk from my desk to the loo - with difficulty. Doc has requested an appointment with an Endocrinologist, and I have an appointment with a Rheumatologist next month.

Does anyone have any idea what's happening to me?

Chrisinnam, UK

[DorsetLady PMRGCAuk volunteer]

Not sure what dose of Pred you are on now, low enough for adrenals to be part of the picture?

But see that following issues at Christmas/New Year, you are now on blood thinners - they could be adding to fatigue issues…

[PMRpro Ambassador]

Deconditioning happens pretty quickly and I was unable to walk much of last year because of back problems. By the time I eventually got sent for physio I was struggling to walk to the village and back - and yes, I know that hardly compares to you - but the physio I saw took it very seriously. I'm appalled you haven't been investigated thoroughly far sooner than this. You definitely need a session with a rehab physio - as you describe at present, you shouldn't be allowed home from a decent hospital.

What blood thinner are you on? As far as I can tell mine don't make me tired.

[ChrisinNam in reply to PMRpro]

I was only on the blood thinner for three months, Jan, Feb, and March. Stopped quite a while ago. It was Rivaroxaban. The problem with walking began well before I started on the blood thinner. About a year ago, in fact, and has become steadily worse. REALLY bad now.

I've been on 5mg since last December.

[PMRpro Ambassador in reply to ChrisinNam]

I asked because DL had wondered. I think you need to get a bit form with your GP because your life is being very very limited by your immobility and it isn't acceptable nothing is being done.

[ChrisinNam in reply to PMRpro]

Just heard from clinic - literally two minutes ago - doc has got hold of Endo team, and apparently I will "hear from the hospital next". Not holding breath!

[PMRpro Ambassador in reply to ChrisinNam]

About time too!!! But no - breath-holding is not recommended at present.

[RachelJDH]

How awful. I feel in a similar position but not so extreme. I am fed up with being so tired. It is depressing when you have been fit to feel so diminished. Definitely push for tests even if it is an effort. I still feel there will be life after all this but it seems that for some steroids are a miracle and a curse.

[agingfeminist]

I am so sorry to read about your impaired mobility. Aging twenty years almost overnight.

I wonder if my story is helpful. I got pred induced muscle myopathy at high doses of pred and it has persisted even though now on 4 mg. My muscles are weak and get tired very quickly. Any exercise (except gentle tai chi) makes it worse. My GP who did a stint in rheumatology and knows a lot about PMR (amazing) said that the muscle myopathy might improve at low dose pred...but it might not...I didn't ask the big question "could I be like this for the rest of my life?" Nothing I do builds muscle at the moment...but who knows...you could suggest to your doc that someone check you for muscle myopathy...there are various diseases that can cause it not just pred...worth checking out.

[Missus835]

I too was very fit prior to 2021 at 71 years old. Contracted PMR through Covid vaccines in 2021 and now able, just yesterday, to string a few towels on the line. Success! Walking at stores (can usually get 2 stores in) and crash on arrival in the apartment. One flight of stairs up. As I said to my grandson, who was carrying bags up, "that last step is a loo loo". He laughed, as I try to carry one bag and the other arm is pulling me up with the handrail.

Actual walking for health is quite a different thing. Unable to put a "number of kilometres" on it as it would probably be 1/2 a K. At least I'm mobile, where some are not. Someone has suggested walking through the mall, but my daughter has the car and would have to drive me there. As much as possible, I try to keep moving.

[potterylady]

Oh man I feel your pain! I went from walking, doing pilates and just being pretty hyperactive, enjoying my active lifestyle, to now in bed at least half of the time. I do a few chores, then I feel like I've got to rest. My legs feel weak and my hips begin hurting. Yesterday, I had to hang a shower curtain and I could only do a couple of hooks at a time because my shoulder weakness and pain hurt so badly I had to keep stopping. Yes, it does feel like aging 20 years overnight. Add to that the confusion of symptoms and treatments. I hope you get this figured out asap, best of health to you.

[Karenjaninaz]

I found I can gain strength by exercise but it must start extremely slowly. However, once you get a little stronger you cannot let up because the downward slide is quick. I finished 9 weeks of pulmonary rehab in Feb. I was walking 20 min on the treadmill and lifting very light weights easily-then- I got lazy as I lowered pred with fatigue at the start of a new dose. Back to how I was before pulmonary rehab. However, once I resume the exercises, carefully, I feel better - physically and mentally. I do take a nap after lunch and need a snack before exercising to avoid low blood sugar- which can worsen fatigue. A full time job to climb out and stay out of a hole.