Enjoying the Sunshine 😎: Hi everyone, I kept to... - PMRGCAuk

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Enjoying the Sunshine 😎

jules1955 profile image
18 Replies

Hi everyone, I kept to 6mg and not feeling too bad, although some days still have overwhelming fatigue. Enjoying the sunshine and rest. My arms feeling a little achy and weak and I am wondering if you ever get strength back in your muscles ? Some days feel so old and feeble !

Jules xx

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jules1955 profile image
jules1955
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18 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Jules,

that’s looks gorgeous - where is it? Very envious on a damp English day!

Yes your strength will come back, and you will be normal again. But in the meanwhile you must remember you still have a serious systemic illness so do what can, enjoy what you can but don’t push too far!

Make the most of the sunshine and rest - it’s the best thing for you at the moment.

jules1955 profile image
jules1955 in reply to DorsetLady

Thank you DorsetLady, it is a little place called Lindos in Rhodes x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to jules1955

Forgot to say - try Pilates! Good for all your muscles, even those you don’t know you’ve got! But, if you can go to a good practitioner, if he/she’s got a studio all the better. Then they have all the equipment and less students. It’s a bit more expensive but they will do a taster lesson for you, and will adjust the exercises to suit you.

Insight329 profile image
Insight329 in reply to DorsetLady

How about bike riding, DL? I used to be an avid rider and I’m looking at my bike and wondering how I’d do with it. Any experience or tips with bike riding?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Insight329

Not been on a bike for a number of years! Not very good for my back! Wrong angle! Except for exercise bike. Do have one that can be used sitting in chair.

Should be okay, although you may feel it in your legs initially!

Insight329 profile image
Insight329 in reply to DorsetLady

No, i have 2 bike but neither is a recumberence (sp?). I think I’ll take a couple of spins in my neighborhood to see how I do before I hit the trace.

Insight329 profile image
Insight329 in reply to jules1955

Beautiful!

SheffieldJane profile image
SheffieldJane

Lovely picture. I think we get a double whammy with muscles. They have been weakened by steroid use and generally lack of use because we have avoided the regular lifting and gripping etc. I expect a good physio would be able to prescribe some exercises that would help build up the strength in them.

jules1955 profile image
jules1955 in reply to SheffieldJane

Thank you for your reply, just started to worry a bit because sometimes feel so weak. X

I could just go for a lovely swim. I think it's down to ensuring you do a rest day every other day to let your muscles recover a bit. I over did it on Monday by accident (waterboard had blocked a footpath off so instead of 100ydsto the car I had to stager a fair old way back helping my friend whose 82). That night and the next day I was very stuff and had painful legs. I rested Tues pm and all day weds. That meant I was able to meet my neice for lunch yesterday. Got to do a but if techie help at friend today but then rest. Just dropping to 8mg on Dsns.

It's raining at moment so very jealous of the view. 😎

jules1955 profile image
jules1955 in reply to

Thank you for your reply, I am very lucky. X

bunnymom profile image
bunnymom

Lovely view. I am between 6 and 7 and feel stronger and not so old. I go to a very gentle movement class (which I skip if I have fatigue) and have been lifting light weights for arm strength. I hope in another month to begin walking. I still have some days of very bad fatigue (like most of this week) but somehow I know that I am getting better. No pain just some stiffness. I don't worry as much about hurting myself as I did in early days. A physical therapist friend also told me I am moving better. No more buffalo hump.

jules1955 profile image
jules1955 in reply to bunnymom

Thank you bunnymom, damaging my muscles ( if overdoing things ) was one of my worries. Maybe I will try some light weights to help my arms. x

York54 profile image
York54

That view looks so inviting!! We are thinking of booking a short break in the sun, just what my muscles and bones need!! I dropped to 5mg yesterday as I had been feeling great at 6mg. This morning, woke with headache!!! Should have tried half mg. Think it will be 6 today and I'll try alternate days!! That wee picture has inspired me , Thankyou!! 😃😃😃👍👍👍👍

Rugger profile image
Rugger in reply to York54

Certainly try 0.5mg steps at these low doses. Have you used the DSNS taper? (Dead Slow Nearly Stop.) Have a look at the Steroid Taper Web App for a whole range of slow tapers - under 'Topics' on the right of this page, choose 'Tapering steroids' and then scroll down to find the post about the app. It's written by Sandra, who has PMR and was studying computer science when she developed it.

York54 profile image
York54 in reply to Rugger

Yes have done 0.5 mg up till now. Think I will stick to that in future!! Rheumatoligist on Monday, he was hoping I'd be on 5 mg by then as he wants me to have a synathactan test(sp). Been here before (4mg) and had a relapse. So slowly slowly!!

Gaycreasey profile image
Gaycreasey

Hi Jules. Lovely place-what a beautiful view. I am also just down to 6mgs and feeling exactly the same, fatigue and weedy arms and legs. I am also in the process of moving, waiting fora buyer so we can put an offer in on the house we would love to buy. In one week we will have had 14 viewings. SURELY someone will put in an offer? I can definitely say that anxiety brings the symptoms on so I’m trying very hard to stay calm. I hope you can stay right beside your beautiful view and breathe in that wonderful air and let that calm your symptoms.

jules1955 profile image
jules1955

Hi Gaycreasey, we sold our house of 25 years last year and downsized. Our first buyer dropped out after 2 months ! We lost the house we were buying too. Had to start again. I know exactly what you are going through, and most definatly stress is a huge factor in this disease. Good luck with your house. xx

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