fatigue

[Antirrhinum]

Hello, all, I’ve only been diagnosed recently. I can medicate the patient n but how do you deal with the fatigue? It comes on quite suddenly. Feels as if my life as I knew it is over.

[piglette]

PMR is life changing and you do have to change your life to deal with it. I just give into it.

[Antirrhinum in reply to piglette]

Thank you. It’s quite hard to accept that but no choice I suppose. Good luck with yours.

[piglette in reply to Antirrhinum]

It does mean that you look at things in a different way which adds to the variety of life!

[Antirrhinum in reply to piglette]

That’s true and always good to be positive. I’ve always been busy and active but maybe I need to embrace the rest times and learn to enjoy them instead of fretting about them. Thank you.

[waltztherapy in reply to Antirrhinum]

Agree we have to make changes.Also that we must stay positive.

Yes embrace the rest times with acceptance, but never give up.

I still try to keep busy and active, but to a lesser degree of course, in the bad times of flare ups. Then, in the good times, rejoice in the short reminder of your old self and take heart that there is light at the end of the tunnel.

We try not to give up hope, and move forward, believing that the minute improvements are in the right direction, while distracting ourselves with fun sociable activities wherever possible. Good luck everyone. X

[PMRpro Ambassador]

Hi and welcome!

DorsetLady will be along with her introductory post which actually contains the link to this but in the meantime, here it is to have a read:

healthunlocked.com/pmrgcauk......

[Antirrhinum in reply to PMRpro]

Thank you so much. That’s very detailed information and incredibly useful. It will be trial and error and a huge learning curve.

I appreciate the time you’ve put to collect relevant sites.

[PMRpro Ambassador in reply to Antirrhinum]

It is why we are here and has been acquired over quite a long time. Nothing is thrown away here ...

[DorsetLady PMRGCAuk volunteer]

hi and welcome.

Unfortunately fatigue is all part and parcel of any autoimmune disease, you have to learn to moderate your activity to manage it. As mentioned by PMRpro see this to give you more info on your illness…

healthunlocked.com/pmrgcauk...

[Sharitone]

The fatigue is indeed very hard to accept. I tell myself that everyone has a limit to their energy stocks, and mine is just lower than some. Also, you can find ways to conserve energy. I was fed up with not being able to walk for more than a few minutes, so now I have just swallowed my pride and bought a scooter so that at least I can go somewhere nice to walk!

[Antirrhinum in reply to Sharitone]

Thank you. It’s a good way of looking at it. And good idea to get a scooter so you can get a bit further away!😁

[seamaid in reply to Sharitone]

snap. I LOVE my scooter Had a lovely day at the Garden center last Friday , and was able to stay for so long , which I could not do on foot.

[Miserere]

Yes, intially the fatigue is hard to take and it does feel as though life has changed for good. However, look at this as an opportunity to do things that perhaps you've not given yourself time to do before. I read much more than I used to and I've taken to studying as well. I also draw and paint more if I feel like it. You probably won't feel fatigued all the time - take it as it comes - in fact embrace it. I've found that once I accepted the diagnosis and the changes then life becomes easier and less frustrating - although there will always be moments ...

[Antirrhinum in reply to Miserere]

Thank you. Yes I can see I need to change my attitude and embrace the rest. Good idea to find things to do that involve resting the body but not necessarily the mind. 😁

[Louisa1840]

Welcome to the club nobody wants to join Antirrhinum! The good news is you've found this totally invaluable forum filled with fellow PMR's/GCA ers. The help and information you will find on here is something I could not do without.

I call the fatigue when it descends "The Wall of Fatigue" it just arrives (a bit like jet lag). Unfortunately, there is nothing you can do except, as others have said, accept it.

All the very best and every blessing on your PMR journey.

[Antirrhinum in reply to Louisa1840]

Thank you. Yes this forum is invaluable and everyone is so kind and helpful. 😁

[Antirrhinum in reply to Louisa1840]

Thank you. 😁

[Sweetpeasoprano]

I was diagnosed in August 2021. I followed all the advice on this site. I tapered v e r y v e r y slowly because trying to rush it never works. I finally stopped taking the pred a few weeks ago and went on a family skiing holiday . Everyone’s journey is different, but take heart, you will get there in the end.

I should add that someone on a lift told me that she thought it was amazing that I was still skiing at my age - she nearly met the piste sooner than she expected !! 🤣

[diana1998]

When I was diagnosed the fatigue was overwhelming. I went to bed and slept after lunch and then had a bit more energy for the evening. Things will improve so take heart.

[Shires123]

I know just how you feel.Diagnosed 6 weeks ago. Can't make too many plans as some days totally wiped out. Lack of sleep not helping

[Antirrhinum in reply to Shires123]

I know how you feel. I’ve had steroids before for asthma. I can never sleep properly on them. I catch a nap when I can. Thank you.ñ so much. 😁

[Daffodilia]

Take a nap in the day if you can - even two if needed - I find it helps

[Tescohednesford]

Hi Antirrhinum...I was diagnosed in February and am still trying to come to terms with the fatigue...

If you have always active it's difficult to understand why you don't even want to pick up a teaspoon some days.

I struggle still to adapt but as everyone on this site will say....

Stop looking at this as a short term Illness that tablets will cure....it's going to be long term and we need to adapt.

Finger's crossed for you lovely....

Dorset Lady always has very wise words....and the advice on here is always invaluable.

With you in spirit...good luck.

[Antirrhinum in reply to Tescohednesford]

Thank you. Yes hard to adapt. But yes DorsetLady very helpful, as is everyone on this site. 😁

[Gimme]

Most of the time, I find the fatigue more debilitating than the aches and pains. It is normal for PMR. You have to pace yourself, shorter bursts of activity, stop what you are doing before you become exhausted and take a rest. Several things have helped me feel a little better, a nap after lunch, plenty of gentle activity to keep my circulation going, avoiding foods with added sugar and alcohol, the Vitamin D helped a bit and you should be taking that anyway, and Berocca helped (B complex with Vit C, calcium and iron etc - the Aldi version is a lot cheaper and almost identical). Those things didn't make it go away, but it took the edge off for me. The thing that works best for me is keeping the inflammation under control with the pred. Hope you feel better soon.

[Tescohednesford in reply to Gimme]

Thank you ...I will check out Aldi.

[Gimme in reply to Tescohednesford]

This is the one I use. You might not notice any difference for 2-3 weeks taken daily. Anyway, I think a tube costs less than a pound, so if you don't like it, you haven't lost much. Don't expect miracles. It's just one of the many options that you have for looking after your health and wellbeing to aid the best chances of a recovery.

Activ-max One-a-day Energise Effervescent Tablets - Tropical Flavour 20 Pack

[Grammy80]

Having been diagnosed with GCA in 2019, I can offer only my understanding and compassion. I used to feel so debilitated that I knew my active life, as I knew it, was gone. Now, at 83, I hardly remember the first year and parts of the second, my pred dose was 80mg per day plus TCZ to save my sight.

Now, I am down to 1mg and TCZ weekly and still get tired sooner than I would like, but I am not dead-stop bushed. The big difference is that I've learned to live 'around' it, which was tough to do initially. Listen to your body, know the hardest times will pass, and when your body begs for rest...rest. When that right foot doesn't want to go in front of the left....the H....... with it, have a seat. I cannot speak for others, but I found that late afternoon and evening were my most productive times. Be kind to yourself, be patient and always be here on the forum for commiseration and company---free advice too. You are never alone with the illness.💞

[PMR2011]

if nothing else this disease teaches us to say “no thank you” to social requests and others expectations of us. It’s actually a good lesson to learn! 😎

[Antirrhinum in reply to PMR2011]

Thanks so much to all of you for your kind, helpful and supportive comments. It’s good to read the advice and tips and know that other people have it but manage and can still seem cheerful.

[Johnnox]

To me, fatigue is the worst of it. Or is it the brain fog that comes with the package and correlates with fatigue? These are the two symptoms which are a standout with PMR with me. And they don't facilitate your daily plans. It's just about impossible to plan your agenda for, say, the week without providing yourself an out when you suffer a flare or similar. I think that it helps to become conscientiously kinder to yourself and make realistic allowances when things are not right. You, like many of the rest of us, can make changes to better live with this thing. Indeed, you must. And there's always the terrific people and advice on this site. You know, there's no "why me"? (speaking for myself). Crack on with your life in good company.