Tired

[Hollyhock11]

Had my CT head scan now waiting for results. Not seen Rheumatologist yet. Still on 40mg a day Prednisolone, just wish I knew if GCA or not. Does anyone else feel like they're walking in treacle - my legs feel like lead when I go shopping? I really struggled to walk. I've bought a wig but it's itchy so trying to find a liner for it. Fed up of heavy legs and no energy.

[Hidden]

My legs use to feel as if I was walking in a swimming pool. This has now declined now on 5mg ish. Yes, still get tired quickly 😶

[Arleneh]

My legs and arms felt as if they had concrete blocks attached. It took several months on pred before it gradually went away. Now they just feel very tired at times .

[DorsetLady PMRGCAuk volunteer]

Absolutely, but it will get better. Hope you soon get some definitive news as to whether GCA or not ...it's the waiting that's the worst.

[PMRpro Ambassador]

I know a lot of people who have commented on the "concrete overcoat"...

[Hidden in reply to PMRpro]

YES!!!!!

[Hollyseden in reply to PMRpro]

I wore a concrete overcoat last summer 🤤

[HeronNS]

I've posted about this before, I think. There is actually a sort of weighted suit (an age simulation suit?) designed for future doctors and other caregivers to try on which limits range of motion and slows movements in much the same way as our disorder makes us feel everything is under restraint and we are in pain because we have to exert so much force in order to move, as though we were in fact lifting weights. This suit is supposed to increase the awareness of the medics so they have some idea what their patients are experiencing.

[PMRpro Ambassador in reply to HeronNS]

dailymail.co.uk/sciencetech...

[Hidden]

Hi Janinej, Here is a paragraph from my Post titled "How can it be a PMR Flare?" (posted about 25 days ago)

"My legs feel like they weigh a ton. My arms feel like stiff, lead tubs, hanging lifelessly from rigid, unmoving shoulders. I have an achey band that runs across my back and upper chest/shoulder area. I am so exhausted and "out of it" I cant see straight...."

I have been diagnosed with both GCA & PMR and have been on as high as 80mg of Prednisolone and now down to 50mg. The side effects and withdrawal symptoms are KILLER!

I hope you don't have GCA, but hope you get some answers and some relief soon!

All the best

[SheffieldJane]

There is a bamboo wig liner on livingwithcancer.com for £19.50. It says that it deals with the itching.

I got the heavy legs yesterday, walking up the hill from my local shops. I just put my head down and pretend I’m a weary little donkey until I get home. For some reason this has helped since climbing a cliff path in Greece following a weary little donkey that was burdened with my case. Then feet up at home and rest rest rest. Fine today.

[Hollyhock11 in reply to SheffieldJane]

Hi Jane, thanks. I'm probably not going to wear my wig for any job interviews or work, and I'm getting worried about if I'll be able to work and how to pace myself through the day! There don't seem to be many folk on here who work?

[PMRpro Ambassador in reply to Hollyhock11]

Increasing numbers. Most of us are old enough to be retired - and most people who develop PMR or GCA ARE retired since it becomes more common as we get closer to 70.

I worked for 5 years with PMR - without pred - but I was a freelance translator working from home. I only had to get from the bed to the computer! I couldn't have coped with travelling to work - I'd have had to get up about 3am!!! And by the time I'd got there I'd have needed my bed to recover. When you are on higher doses of pred there are other considerations, depending on what you do. Pred affects memory, multi-tasking abilities, mood and decision-making - so that can be quite critical too.

[GOOD_GRIEF in reply to Hollyhock11]

Hi Janine:

I've worked all the way through PMR, only taking days off for snowstorms. I won't risk a fall on the ice or snow to get to/from the office.

I cut my hours back from 80-90 hours/week to 40-50. My commute of 1.5 hours each way is the same, but now I travel outside rush hours so I can get a seat on the bus. I do a lot more work from home now than I used to. I save the office hours for face-to-face meetings with peers, staff, other departments, auditors, and the CEO/CFO/BOD. Anything I can do from home gets done with me in my jammies on the couch. I keep the hair and makeup from pre-dawn to midnight so I can take video conference calls from the other time zones and overseas.

There are lots of jobs now where telecommuting is an option. Maybe you would be wise to seek a position where this is viable for both you and the employer.

[SheffieldJane]

I am really sorry that you have to work. I suspect that I was undiagnosed during my last position in the Law Courts. I used to have to take witnesses in and out of court up and down three flights of back stairs, or if they had mobility problems, the terror of the Judges lift ( there was often one in there in full fig). I used to think god I am soo unfit. The rest of the job entailed supporting them before during and after trials - all seated thankfully.

It would be unthinkable now, with the best will in the world, just turning up each day. That is where I would have worn a wig, I think.

[Hidden]

I do the step counting and I don't mean.a pedometer. I count every 8 steps and then start again. On bad days it can be 5 steps. I do have other mobility issues so am used to it after years of counting. When I was a fit touring cyclist going up the Pyrenees I started counting pedal cycles as I struggled uphill and it helped, so I reverted back to that when walking became an issue. That way I dont think there's 10mins of walking I just think do the next 8 steps. The number of steps is arbitrary albeit based on your fitness/fatigue. Choose a number that's doable then you reach the target. The positive achievement of the target keeps me going. Sometimes I can hAve 5mins rest other days more/less between sets of 8. Your tArget might be 20 or 100 ...as long as it's realistic and accounts for gradients etc.

[TooSore]

I work as a preschool special education teacher, but I "only" have PMR and started on 15mg. I look back and wonder why my principal didn't put me on medical leave. All I can say is that she had bigger issues to deal with, I hid what I could and I have a fantastic team of para educators that step up well beyond expectations. I also use sick days now and again to rest. It gets better over time but the stress and long hours definitely take their toll. I also did nothing else for a long time and still don't do much housework choosing to add in exercise instead. Hang in there, think about cutting back on work, or work from home if you can. A later start to your work day is helpful so the prednisone has time to kick in and you can loosen the morning stiffness.

[PMRpro Ambassador in reply to TooSore]

Or you can take the pred before bed - and it is working by morning. Works for a lot of people.