Apologies in advance for the moan ahead but I have to tell someone. Today I went into Glasgow to get my overly dry, falling out hair some TLC. Ive been Treated for PMR and GCA for about a year now and the tapering of steroids has had one setback but got on track quickly. The pain is so much reduced, ok muscles are sore when I do things but I can get up out of bed without crawling which I could not do last year.
Today I did nothing but drive for 40 minutes and sit in hairdressers yet I am so utterly exhausted that I sat in my car at the gate to my house for half an hour because I couldn't find the energy to get out. In 10 days time I am supposed to be going for 5 days to Spain to see friends. I cannot cope. I feel so guilty at doing nothing and too tired to try anymore. Has anyone found anything which eleviates exhaustion, I already take vitamin supplements and have had blood tests done by GP which were ok. Well ok ish!
Thought I would reply, unfortunately not to give you any advice but more to commiserate!
I was also diagnosed last year, June - PMR/GCA - eventually gave up work in May of this year, just couldn't manage - was too exhausted. I seem to have alternative days, one goodish day, whereby I guess I do too much and the next really really fatigued. So I weigh it up what I want to do and also what I actually need to do and manage as best I can.
Some days I can be reasonably productive others I can sit on the sofa and dose all day and I am 57 for goodness sake! SO yes I can understand your frustration. I have just got to 10mgs but struggling with increasing aches and pains, headache yesterday but ok today so I am taking it really easy. I have not been able to stay at 10 for more than a week before, and I am at that mark now, so fingers crossed.
Be kind to yourself, I know its hard but you can only do what you can do. Good luck with your holiday, I have got to that point I hate to plan anything encase I let others down but then take the risk I miss out on things I know I would enjoy.
Lesley I so agree with everything you have written particularly not being able to plan because each day is so different. I never know why. Isn't this the most frustrating illness. I was only diagnosed at the end of May so still learning and little snippets like your post are so helpful. Hope today is a good one for you.
This forum is really good - someone, somewhere always understands! Although I struggle with the following .... I would advise to try and be patient, and kind to yourself, accept and realise life has temporarily changed and you cannot just carry on as before. However, I am determined eventually to get my 'life' back!
Thank you Lesley for replying, doesn't it make a difference to know someone is interested. So far I haven't put on any weight, have lovely rosy cheeks and people say how well I am doing but I feel absolutely horrible. No wonder some folk think it is all in the mind. Also I have accepted my illness and rest all I can so they only see me when I am on a "good hour" and look so fit. Thank you for your post it was so nice to receive it. Be kind to yourself.
My sister just sent me 1 oz bottle of Vit B12 it is liquid. Brand name is Brotal
On the front is says Energy. She gets it online and her n her hubby swear it gives them more energy. Today was my first time taking it so don't know first hand yet..
I was in the same boat as you worrying about a trip. My trip was 1 hr on airport bus to airport then almost 4 hrs flying. I had taken an anti anxiety pill will kept me calm and by the time we got to our rooms I was fine. My normal is not to much activity. I paced myself and told my friend I would like to sleep in late and it was ok .. But all we did was go to a pool bar during the day and down to the beach later in the day and then out to dinner with a short rest prior. Not my idea of a five star resort trip and realized I am the cabin by the river sorta gal.
Good luck it will be ok. I tend to worry myself into a hole this time I did not.
🐠. Lin
Sorry we are as bad as each other and thank you for your kindness in sharing and elevating my feeling of isolation, good luck in getting well xxx
Unfortunately, both PMR GCA and Pred can caused fatigue, so it's a matter of trying to live with it as best you can. Actually driving, although most of us take it for granted can be stressful and very tiring, especially in a city, so don't beat yourself up about it!
As for your holiday, try and get as much as rest beforehand, and tell your friends that you won't be burning the candle at both ends. If you tell them before that you have an illness that leaves you fatigued if you do too much, I'm sure they'll just be pleased to see you without painting the town red.
Request assistance at the airport, not sure where you're flying to, but if it's Malaga it's a long walk from and to the plane!
There is no magic answer, no miracle supplements or diets or anything - I don't care what you read on the internet.
You have a serious illness - and the illness is NOT the GCA you see, it is an underlying autoimmune disorder which is what causes the inflammation (I'll explain more if you want, just say). The pred you are taking is there to reduce the inflammation and allow you a better quality of life in the meantime until the autoimmune disorder burns out and goes into remission. That may take anything from 2 to 6 years or even more for 75% of us. It is the autoimmune disorder that gives rise to the fatigue.
Lesley mentions good and bad days - and she also answers the obvious question. You do too much on the good day - and the result is the bad day. If you had done less on the good day - you probably wouldn't have had the bad day, they'd have been much more even.
Driving is stressful - especially in town, and I find driving in Glasgow a close approximation to hell! If it comes to that - I find going to the hairdressers a close approximation to hell (I know, I'm not a normal woman). I do appreciate the need to go to a brilliant hairdresser - and I used to go to mine near Dundee when I travelled from Durham to visit my daughters! But I didn't have PMR then.
and once you get to that you will find the guilt goes - and that is a really important stage of your recovery.
Go to Spain - request airport assistance whether you think you need it or not (hope you don't have to fly via Heathrow!) and emphasise to your hosts you need to REST. Enjoy the warmth, the food and the company. Don't feel you MUST do anything - one of the things I learnt years ago when living in Germany is that is the company and not what you do or eat that makes for a brilliant evening with friends.
But above all - cancel the guilt trip.It does you nor your friends any good at all.
I am currently on holiday in New England and have been really struggling with wanting to do more than my PMR lets me! I have had 3 really bad days and have upped the pred. Just to try to feel a bit better. Having said all that, I am having a wonderful time because this is a magical holiday touring around, seeing the autumn foliage as well as all the coast and boats etc. My husband and I have waited a long time for this holiday and I didn't want to wait any longer - I.e. Until the PMR went as who knows when that will be? Do get airport assistance- they are usually very helpful- and do try to stay within what your level of inflammation will allow. Resting definitely improves any pain due to doing too much.
It must be the day. I went and had my hair done this morning too, and I only have a ten minute drive. Did nothing much after I got home. Then hubby and I took some of our books to a used bookstore. Hubby stopped at Bulk Barn on way home to buy peanuts, and I was too tired to get out of the car. No reason. Just tired. But that doesn't mean I won't be full of energy tomorrow. And you will also quite likely have more energy in Spain, even if you have to sleep for a week when you get home.
For some reason driving utterly exhausts me. I work full time and generally manage that ok. But 20-30 min driving and I'm nearly asleep at the wheel. Don't know if it's the concentration or the movement but I now avoid as much as I can.
I agree with the others about assistance at airport. I used it once not long after diagnosis and it was brilliant.
Hi doubtfullee, for some reason I find the hairdresser a real trial, the chairs are uncomfortable, sitting with wet hair feels wrong, leaning backwards to have my hair rinsed hurts. I often feel sick or like I'm going to faint. I always have to lie down for a couple of hours after. Ruining any blow dry. I don't think they like me much as I don't make small talk and sit there with a grim moon face. Tempted to give in and have a grey crop.
However, my recent holiday on the Greek Island of Hydra ( no transport except donkeys) accommodation in a windmill on top of a cliff - only way up on crumbly winding steps, was lovely, with the help of pacing and Nordic walking sticks. The sun, the view, the kindness of family, bobbing about in the pool all worked.
So try not to self limit. It can be quite surprising what we can manage and what knocks us for six.
I think you did brilliantly to drive for that long. I have heard that vitamin B12 (I think) injections can help if you are short on it, but as your trip is so soon that's not going to help in the short term. I had given up coffee (espresso ) as I was told I should, but having felt like an exhausted lump of nothing, I went back to triple espresso (always been excessive) several times a day. Got me through a few family gatherings. I do hope you get help both ends of the flight, don't let your lethargy deny you this, it's so easy to find it exhausting just to think about getting help. I do hope you come back with some lovely memories, take lots of pictures to remind you.
I always ask for a front wash at the hairdressers, I go about every 6 weeks for a trim. Last time I had a backwash I had head pains for a week, I learned later that it can cause a stroke in some people. Could you find a mobile hairdresser to come to your house?
Don't cancel your holiday, you will feel better if you can rest while you are there.
Sometimes a change of scene (and warmth) might help. I found I felt better (before diagnosed) when I met a friend for coffee. I used to work from 7-2 and go home and sleep or just rest in bed for an hour and then I would get up and walk for @ an hour. Otherwise I would get too stiff.
Dear @Doubtfullee, i have yet to read anything good about steroids. i was taking Entocort 3 mg time released in the morning. and it took almost a year to slowly get off of them. That i was told was also a steroid. well any how now i am off of them, and as i have also read on this site, that you don't feel any better or worse then you did before taking them. it seems no matter what you do, there is no feeling better. and i have to agree. but it's a lot cheaper to not take them.
" i have yet to read anything good about steroids ... i have also read on this site, that you don't feel any better or worse then you did before taking them"
Then I can only suggest you need to do more reading. I would never choose to go back to life without steroids if the PMR was still active - and last time I looked it was.. Without pred I was housebound and constantly in pain, with 15mg in 6 hours I could move normally for the first time in 5 years. And I am by no means the only person on these forums.
With pred (and well below 15mg) I have a pretty well normal life - there is very little I can't do. I skied for a while both with PMR and whilst on pred but have now given up for other reasons. But otherwise I live a normal life. I have had 2 x 4 weeks trips this year, flying to Canada/USA from Europe twice - no problems. I have very little pain and am mobile.
Yes, there are people who have problems - but they are in the minority if they have PMR. If you have GCA you have a fairly basic choice: take pred or risk losng your sight, I don't care what problems you have with pred - none of them are worse than going blind. It is by no means perfect - but the alternative is more often than not worse.
Bear in mind that on any forum you will meet the people with problems - those who have no problems won't need a forum. I could live well without a forum - but I work with the charity to provide information and support for those who do need help.
Dear @PMRpro, i wasn't telling anyone not to take them, if you believe they are doing you good , by all means take them. we are all different and we all re-act differently to different drugs. they were not doing me any good, and they were hard to get off of. i'm not a doctor, and i'm not saying it as a doctor. i am happy for you, everyone is effected differently by Parkinson's also. but i haven't heard anyone saying that they were delighted to be taking them. i would like to get off all of my meds, but that won't happen. and the others aren't choking out bank account either. i know prednisone is a lot less expensive, but entocort when i started was $1000.oo for a one month supply,
however my GP and GI did not feel they were as good as this , and i went for the generic, which was about half that. so that's what i took for years, and didn't feel they were doing much , and i was taking them because my GI doctor prescribed them for colitis. which i also have .
by the way , what does scunnered translate too? Good Luck.
Scunnered is a good old Scots word which you have to screw you face up to say! The mere act of doing this portrays the extents of the heart felt disgust which the word means. There is no real English equivilant and sometimes only scunnered will do!
You are on a forum for patients with PMR and GCA - the only available medication to allow us a normal quality of life is pred in one form or another. I don't BELIEVE it is doing me good - it is my lifeline to a normal life. If they weren't doing you any good - the likelihood is you didn't have PMR. That's what I was saying. And that your statement was also incorrect - because loads of us on the forums say how grateful we are that pred allows us a decent QOL. Like DL. many have pred to thank for still being able to see. I think that is good enough a reason to want to take them.
doubtfullee has given you one meaning of scunnered. For a more detailed treatise of the full range of its use you might like to read this;
I'll tell you one good thing about Pred - it saved the sight in my left eye! Right eye had already been lost to undiagnosed GCA.
So please don't diss a drug when other people's lives may depend upon it.
Think just sounding off and then having the reassurance of all your kind responses is a great help. I started B12 spray a couple of weeks ago, gave up coffee months ago, started it again when it made no difference except for missing the immediate gratification from its deliciousness! My doctor phoned with my latest blood work and wants to see me tomorrow morning to discuss increasing Pred.
Now looking forward to holiday, I am flying from the smallest airport which is 10 minutes fro my house and will look into getting help at the other end, BARCELONA seems to be a big airport so i will avoid any unnecessary problems, swallow my pride and accept help!
Thanks again, this is a great supportive safe place which really helps my mental attitude.
Have fun - I understand from a friend who is in the south that Spain is heaving! And Catalonia has just had some VERY interesting weather so I hope you aren't going for a week or so!
Going out on the 25th, sounds like my husband going sailing might not be such a good idea!
I can relate to all those who have responded on the issue of fatigue. It comes and goes with me and at times is totally debilitating. However, I try to live as normal a life as possible, including travelling regularly. I can be fine for days or weeks and then be wiped out for one day or more days. It's only taken 2 years but I've learned to take life a day at a time and pace my daily activities. I've given up trying to figure out whether fatigue is due to the illness, the prednisone, a change in the weather, a recent reduction in prednisone, or unusual physical activities and try instead to live each day to the fullest extent that I can. Fortunately, I have a wonderful, understanding and supportive husband.
Go on that vacation! And definitely get airport assistance. I wouldn't be able to travel without wheelchair assistance. The distance you have to walk is airports these days is insane!!
Hello to all of you, if you read my first statement on steroids , i did not suggest that you all stop taking it. i really don't understand all the fuss, but anyhow, i was only telling you about my experience with it. and i didn't like it , it was not doing anything for me, it was cost prohibitive, and it took a long time to get off of it.
it it is saving you from everything under the sun, by all means take it. it's not my circus and not my monkey. Is that clear enough for you? i was given it for the colitis that i was diagnosed with. and it was doing nothing for me, so i decided to stop taking it. i have Parkinson's also, but it still did nothing for me. i have read so many statements about steroids on this site and the Crohn's and colitis site, for the same reason. that i was just adding my two cents worth. Peace.!
so sympathise..feeling the same…did you find anything which helped…..
Hi Nonnabrighton,
Exhaustion is no fun but there are periods where energy is better. Little things to conserve it are the most predictable if slow ways of improving each day. Sunshine and relaxation am no expectations made me feel so much better so my short holiday really helped. Mostly though energy is difficult to predict . It's still frustratingly an ongoing battle but I now appreciate the periods of greater normality and tell myself to learn to live with it. When I struggle beyond my limits .... boy do I pay for it , so on good days I do good things and on bad days I accept it, ( in my dreams ) read a book if my concentration is ok or just distract myself until the next good day. Sometimes I wish I looked the way I feel maybe then I would not also battle with feeling guilty for being useless.
I've tried every lotion, potion and treatment I can find . For me Bowen therapy made me feel a bit better in the short term, it's wonderfully relaxing. A massage machine helps with specific stiffnesses.
In a triumph of hope over expectation I will continue to try anything I can find to expedite the expulsion of GCA and PMR from its most unappreciative host! Who knows maybe tomorrow......
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but I've learned to take life a day at a time and pace my daily activities. I've given up trying to figure out whether fatigue is due to the illness, the prednisone, a change in the weather, a recent reduction in prednisone, or unusual physical activities and try instead to live each day to the fullest extent that I can. Fortunately, I have a wonderful, understanding and supportive husband.
Exhausted!
Exhaustion and stiffness, nearly down to zero!
Confused and exhausted.
heatstroke / exhaustion?
Decision exhaustion and grit my teeth?
