A kind friend just took me for afternoon tea at a posh London hotel. After travelling into London and back as well as sitting at a table for hours I am now in dreadful pain, sweating and shaking! Going for a lie down...
Can't do anything nice with PMR: A kind friend just... - PMRGCAuk
Can't do anything nice with PMR
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Badgergirl
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Travelling and a day out is always tiring. However I think it was the food that made you feel ill . PMR doesn't seem to allow you to eat "afternoon tea". The last time I went for a "posh " afternoon tea I felt as you do. I am convinced it was the wheat, fat and sugar - sandwiches followed by several small but delicious rich cakes. I felt quite ill afterwards with headache. Next time try and go for a lunch instead - And avoid too much carb and fats. It works for me. Hope you feel better after a rest.
Badgergirl I hope you feel better soon . Its awful how PMR doesn't let you get on and enjoy the trips out with family or friends ..I am still getting over 2 nights away to my Sister- in- laws 60 th Birthday Party last weekend .We have to plan carefully but sometimes it spoils it for others .. It was lovely seeing all the different family members and to surprise the Birthday Girl .. I didn't eat much at the evening buffet because I arrived early at the hotel to eat a proper meal at lunchtime and I managed not to pick during the evening .I hope you feel much better tomorrow . trish29
PMRproAmbassador
It will get better - honestly! For the moment though try to plan ahead and sandwich travel and rest - but if it is any consolation travelling into London when I was well left me feeling like that!
At the end of June, having travelled from Italy to the UK by car, I have to leave my car outside London and get from Farnborough to King's Cross by train for a 5 day meeting. I can't wait...
I have always dreaded travelling to London even though I was on a main line station to Waterloo. Had to go sometimes for business meetings and always came home like a washed out rag.............and that was years before PMR. After PMR dropped in, when business took me up there I always took the following day off work. Guess I'm just a country girl at heart.
Hi All. Thanks for your replies. I am feeling a bit better thanks; shaking and sweating has stopped but the pain is very bad. Suzieh, I'm OK with bread but you are right about the cakes as they've made me feel bad before. I don't usually touch them! That and the uncomfortable train and tube rides and holding an umbrella aloft gave me no chance. So unfair we can't enjoy such things but we will enjoy them all the more when we are better.
CelticPMRGCAuk volunteer
Well, travelling into London always results in me almost collapsing into a seat on the train on the journey home, usually nodding off, and good for nothing when I get home.....and I'm off steroids! Anno Domini?!!
Badgergirl - It wasn't Claridge's by any chance was it? Been there once and loved it. I hope you have a lazy day planned for tomorrow.
It was the Millenium in Grosvenor Square. Yummy cakes! Still feeling yuck as I was awake all night with the pain in my shoulders. Oh well, tomorrow is another day.
Oh so unfair for you to suffer after such a special treat. I used to find a large electric heat pad helped to relieve my shoulder pain when at its worst - worth a try if you've got one.
Thanks Celtic. I must try to get one.
Ditto ditto......that will teach us to have a good time!!! Have fresh air weekend if you can. S.x.
oh dear badgergirl, pmr is so frustrating isn't it. I went into town to-day, got tired quite quickly. sat down at home now and feel really weak. pacing seems the way forward with pmr. its just getting used to doing it is the problem x
Dear dillydally1 I know what you mean .. I too went into town yesterday and tried to get normal things done , just the Bank and the Post Office and to get some Birthday Cards ..I was tired before I could get half of what I wanted. This PMR is really taking its toll and I am learning after nearly 10 years to accept more help .. I have a lovely lady who does for me and is willing to help me with anything .I am getting less and less done and even arranging flowers in a vase and feeding my Garden Birds is exhausting ..I know I've had a dreadful Virus and on Tuesday I have to have a tooth extraction so let's hope I pick up from there . I hope you feel better today and that your energy levels are better ..PMR is just so humiliating .. Trish 29
Hi Badgergirl. Any day out now results in needing a couple of days recovery. I can almost guarantee I'll have the sweating , shaking and pain. I thought my days were numbered this week I felt so ill after a day out. Getting home in one piece and trying to behave and look normal with sweat trickling down my face and back and shaking to the point of almost collapsing was such a blessed relief. Hope we all feel better soon . This PMR journey is no fun. I am really fed up with it. Hugs to you all. xx
Hi Greensleeves. Sorry you felt so bad too. My friend had gone to great expense to treat me, to the posh tea buying tickets in advance without my knowledge, so I had to go. The problem is that no matter how much we try to explain to people what PMR is like they can never really 'get it'. I'm really fed up with PMR too. Sometimes when I wake up in the morning I think I can't face any more of it but of course we have to make the best of it. Yes, hugs to everyone xx
Hi Badgergirl ..everyday I wake up I pray I will be Normal again .. So many years of feeling this way .. Partner aggitated because I can't get better and he has to do more.. Pain level Sky High today and waiting for a tooth extraction on Tuesday .. It should go OK as I have a lovely lady Dentist who understands PMR..I get fed up with people who tell me I look OK ,but you have put on weight ? GPs and other medical people think that you choose to have PMR and if you got a bit more mobile then the weight wouldn't go on . Don't they realise that They are the ones prescribing THE MEDICATION that is causing the problems . Sorry to have a Grump but there is enough of us out there , This Forum has proved that and where would we be without it ? Take care and I hope tomorrow is a better day for you .trish29
Hi Badgergirl and Trish,
People really don't understand this disease. Most seem to imagine it's just a bit of muscle pain .
They don't realise you feel like you've got a bad case of flu during a flare.
How any exertion , like just hanging some washing out can make you feel shaky and sweaty and weak.
How horrible the weight gain is, I was always skinny , now I'm overweight . I can't lose it either because I'm in a sweaty state if I walk a few hundred yards .
I am coming up to 2 years and I beginning to worry it won't ever go away.
I don't complain to the family as I've got 3 family members who are poorly with more serious illness's and I am very fortunate compared to them . But the other frustration is I can't cope with all the care and help they need.
Trish I'm so sorry you've had it for so long now. It's a shame you've got the added strain with your partner not fully understanding that you can't help it and would love to be able to do what you could before.
I've also got a bit of surgery next week and I'm worrying I might not heal or the stress of it might cause a flare.
I've never seen a rheumy or had repeat bloods to check how I'm doing. .
Once this surgery is over I'm going to insist I see one.
Good luck with the tooth extraction , I'm glad you've got a nice lady dentist.
Take care all. xx
Hello Greensleeves and Trish. At least we can talk to each other on this wonderful forum. Where would we be without it? I feel like I have flu even without a flare - the fatigue, lethargy, not thinking straight and the sweating.
I do walk as much as possible because I'm afraid of muscle wasting and bone loss and I've heard that walking shortens the illness. Sometimes I have to turn around and go back home but I do try a couple of times a week to walk 2 miles (sitting on benches along the way). I'm lucky though that I have not suffered with my hips so far. I have gained weight but only 7 lbs but I hate my moon face so much. It really upsets me as I used to be glamorous! Vain I know but I can't help it.
Trish, I hope all goes well at the dentist. It's great you have a good one who understands. You too Greensleeves with your surgery. Even the worry about it can cause pain and flares.
I haven't seen a rheumy yet either and have no idea how my bloods are doing.. I had to fight to see one and have an appointment the week after next.
It will go away but not soon enough. I hope you both and everyone else, have a good day. xx
"I've heard that walking shortens the illness" - there is nothing that will shorten it - the auto immune part will go into remission when it is ready and then the symptoms will go away. Walking is good for you, yes, and helps to mobilise the stiff muscles and keep them toned. Overdoing any exercise though will leave you feeling ill. There have been a few people who claim they have "exercised PMR away" - if it went away it was coincidence. It is usually men - men have a different experience of PMR, no one knows why but apart from anything else about 3 times as many women develop it as men. Hormones maybe???
Hello Badgergirl,
You're so right , where would we be without this site. I've just joined a PMR group on Facebook , but haven't been accepted yet. I feel as though I've constantly got a virus or flu symptoms too.
You are so good walking, I didn't realise it could potentially shorten the PMR duration.
That's it , I'm going to do as you do , walk and rest, walk and rest. I will be a sweating mess but if it helps me to lose weight and help the PMR to burn itself out then it's worth it.
I've gained almost 28lb , and it's not going anywhere even though I've been dieting. I understand about the moon face, mine is going now , but I'm sure you're still just as lovely.
It's not vain , it's hard to come to terms with these unwelcome changes, . and when you feel good about yourself you are better equipped to cope with other things.
Good luck with the rheumy and let us know how you get on.
Take care. xxx
To make sure you see it:
"I've heard that walking shortens the illness" - there is nothing that will shorten it - the auto immune part will go into remission when it is ready and then the symptoms will go away. Walking is good for you, yes, and helps to mobilise the stiff muscles and keep them toned. Overdoing any exercise though will leave you feeling ill. There have been a few people who claim they have "exercised PMR away" - if it went away it was coincidence. It is usually men - men have a different experience of PMR, no one knows why but apart from anything else about 3 times as many women develop it as men. Hormones maybe???
Weight gain can be helped by cutting carbs a lot - pred changes the way your body processes carbs,
Got it PMRpro. I admit I was a bit dubious. It's just that a woman I knew got over PMR in 18 months, the last 6 months walking daily and she was convinced the walking shortened it. I agree that exercise can't stop the autoimmunity but it does improve sense of wellbeing, reduces risk of muscle weakness and also reduces pain. Maybe this helps the steroid reduction to go more smoothly?
Hormones, yes. Oestrogens are generally recognised to play a part in autoimmunity, sometimes excess and sometimes depletion, but the scenario is so complex that reasons are poorly understood.
I walk daily (unless it's raining, no fun then, but it doesn't often rain here!) and in the first 5 years when I had no pred I was at the gym every day Monday to Friday doing an aqua class as walking was too uncomfortable. After 10 years I still have PMR! But yes - even if you can't walk far at a time going out and doing something, being with other people does make you feel a lot less down and isolated and mobilises those stiff muscles so they hurt less. I wonder if it occurred to her it might be the other way round - the PMR was fading so she was able to walk more?
I never thought of that. It's very possible that she could walk easily because her PMR was fading anyway!
What dose of pred were you on Greensleeves when your moon face started to go? I'm on 11 mg and can hardly see my ears from the front!
Hi Badgergirl, I'm on 6mg now and started to see a difference in my face from 7mg. Hamster cheeks have gone . I still have a fat neck/chin and tum 
I'm going to stick at 6mg for a while and not push it . You will have your ears back. Take it steady. xx
Thanks Greensleeves. I guess I'm looking at a few months then. Groan... x
A little internet shopping for new clothes and a visit to the hairdresser often makes me feel better. A bit of extravagance and ad few treats help ( also arms feel sore blow drying hair). I used to like going out to the shops but no more - too tiring!!
On a gloomy note...... I do often wonder if PMR / steroid doses make life expectancy less - any one out there know the answer?
Hi Suzieh , I agree with you. A visit to the hairdressers or getting a manicure cheers you up. I can't do shopping at the moment. I need to keep stopping for coffee breaks. I enjoyed nothing more than buying clothes , but it's too tiring and depressing .I'm refusing to buy these larger steroid induced clothes.
I was wondering about life expectancy as I'd read someone saying it would shorten life but improve the quality. I've just read PMRPRO'S stance on this . xx
Not my stance - the results of review studies. Someone said PMR would IMPROVE QOL?
Irritatingly - as soon as I gave in and bought fat clothes (my daughter was getting married, I nothing to wear, not even jeans) I started to lose weight! Luckily I have a tailoress neighbour who charged me a whole 35 euros to make my VERY expensive lovely jeans fit again when they got to the stage that even a belt didn't help 
And being a very mean person I had never chucked the slimmer stuff - I'm now wearing it again. 
PMRproAmbassador
Neither PMR nor GCA lead to significantly increased mortality (death in a given time after diagnosis). GCA is definitely associated with increased morbidity - developing other illnesses within a given time, usually a 5 year figure. Steroid use is the primary cause of the morbidity I would imagine but the inflammation of GCA can cause other arterial problems - and we should be monitored for them.
Thanks for info PMRpro, slightly off putting . xx
All this talk of exercise and walking... I have a dog and my dogs have always been well exercised so that means me too. Some days I start out feeling like the "concrete woman...." And keep going up the hill. At some stage I recover to feel I have blown out the concrete and got clear blood going round, but getting home and sinking down to that coffee is like reaching the finishing line in a race. An hour or so later I can get going again, but there is not so much housework done these days as the lunch rest (and snooze sometimes) has to be accommodated! I have a deep muscle massage every three weeks which, like standing in a hot shower, is most enjoyable and helps me to keep going. (Sorry water company). I am now on 3mgs. Each drop taking longer to achieve though. Need to tackle the weight now. Will reduce the carbs. Thanks for the tip....
I too try to walk regularly. It's hard to get going but then I loosen up. Sometimes I have to stop and go home if the pain starts though! I always sleep afterwards to recover. Well done for getting down to 3 mg! That seems a long way off for me...
I walk on a daily basis one way or the other (it sometimes involves shopping) but I'm currently using a tri-walker or crutches due to other problems. I've so far lost 2 of the 3 stone I put on during the last GCA flare, but because my mobility is so limited now that last stone is proving very difficult to shift and it is really annoying!
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