I haven't posted on here for quite a long time but I'm rearing my ugly head again.
Hubby ceased taking Pred in September 2022 and the symptons/pain etc of PMR seem to have finally disappeared. Rheumy signed him off etc. However, he has very little physical strength and little energy. Formally a very active chap and this is getting him down. Played golf at a high level since his early 20's but can now only manage 7 holes before he is exhausted and no strength to hit a golf ball. My question (to which there may not be an answer, I realise) is-----is it possible to regain strength and energy after PMR and is there anything we can do to help this along?
He is grateful that he is pain free but I think he finds it a little depressing.
Many thanks in advance for any suggestions/comments.
Kind regards to everyone
Irene
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piggylovesgolf
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Would say it’s probably his adrenals still struggling to get to full working order- and that can take anything up to 12 months after finishing Pred [for some even longer ].
Not a lot to do really but just time and patience… and not to push too hard but to try and increase activities gently .
He could request a basal cortisol test from GP [as discussed this link] to gauge the situation…and if readings are below par [sorry!] get a more detailed test…
Many thanks DL. I'll give that some thought and perhaps try to persuade him to try. I do realise that hes 77 and I suspect that there is no answer to this problem---we have to just be grateful that he seems to have finally got rid of this ghastly illness---it lasted nearly 6 years. He's been off the Pred for 18 months now but doesn't seem to be getting any better strength wise
I know what 6 years [with undiagnosed GCA initially and then high doses of Pred] can do - and it doesn’t come as easy to build back up as you get older…. Plus as you say, cold wet weather doesn’t help.
But good news you can get back to a reasonable place.
Might be worth trying a touch of the black stuff… back in the day stout was recommended for older folk, and when I was pregnant and in living in Germany it was recommend by the locals I drink a similar dark beer…
When my wife had her first child in Durham, she was recommended to take Guinness. She didn’t like the taste that much and used to put some orange cordial in it!
I gave birth to undiagnosed twins!!!!! They told me to drink Guinness and my Dad said I would never get it down so I kept knocking it back to prove him wrong
Hmm ... Guinness and orange sounds tempting. Think I'll stock up. I used it as a tonic after the birth of my 2 children. Not fussed on the bottled stuff. The cans are preferable. Perhaps a dash of lucozade? You have given me ideas 🖤🍻
Back in the dark ages at my rugby club, the choice of drink, for the younger players at least, was cider and Guinness. If I recall correctly, it was pretty potent.
Sadly your husband will never be the same as he was when he was in his 20s and even without PMR everyone loses strength over time. He can build up his strength, but it is slowly but surely. Perhaps one day he will be able to get onto that 8th hole.
Thanks piglette. We were aware that he would never be the same as in his 20's but I was just really trying to make the point that he was basically a very active man. Our golf course has been closed much of the winter due to dreadful continuous rain up here in the north of England and that hasn't helped with the lack of activity but as you say----try and make it to the 8th hole:):) He does actually play 9 but the last 2 are a disaster.
I was hoping there might be some miracle potion--like maybe Guinness:) that would help and whether in fact strength ever returned. We are both thankful though that he seems to be free of pain and debilitation etc
My grandmother used to reckon Guiness was a cure all. She stayed with my family for a while after she had a hip op and my mother let her have one Guinness an evening. She would ask both myself, brother and sister for her Guinness saying she had not had it!! So we happily poured one out for her.
I have seen what Guinness has done for some one I know , (nothing to do with PMR, !) I t has been a total lifesaver for her, but I am not a fan . I was suprised to see it mentioned on here . I may pluck up the courage to try it again😬
It is not as cheap as some I have seen. I suppose anything fizzy and undrinkable would be fine as a black velvet. My brother had a girlfriend who asked for soda with a rather expensive cognac. I remember being horrified!
I was wondering if it was drinkable as a fizzy wine!! Sounds a bit like the day to day drinking in the Franciacorte region around Iseo - really perfectly acceptable.
I think I would prefer a sparkling Saumur! But probably more expensive. If you mix drinks I think you can get away with cheaper products than if you go just for the one.
One of the effects of prednisolone is to weaken muscles - the term for it is "steroid myopathy". As well as being 6 years older than when he was diagnosed, there could be an element of this. I have had PMR and GCA-LVV for 8 years and feel I have less strength too. I am still taking prednisolone!
We just have to keep plugging away to remain as active as we can. I did the 12-week Joint Pain Programme at my local Nuffield Health Fitness Centre, which the PMRGCAuk charity endorses. It helped me to see what I was capable of in a safe, supportive environment. If you live near enough to one of these centres for him to attend twice a week, I would recommend it.
Thank you Rugger. I don't think we have this centre near us but I can see from the replies that his condition must be fairly normal. Pity but there it is and at least he is in the aftermath and not still on pred. Im going shopping shortly and will get a stock of the "black stuff " in and see if that helps:):)
Guinness is a stout - stout is a type of beer. All Guinness is stout, not all stouts are Guinness. Stout is a part of the ale family and is usually a very dark beer. A stout is typically thicker than a traditional ale due to using malt and smoked barley in its brewing process.
What is a stout beer?
A stout beer is a dark beer whose flavour comes from roasted barley, which is made by highly kilning barley grain that has not been malted.
Stout beers have several variations.
• Dry Irish Stout beers include Guinness, Murphy’s and Beamish. Though many believe these beers have a high ABV* because of their dark colour, they usually are 3.5-5.5% ABV. This allows them to be incredibly drinkable.
• Milk stout is a stout containing lactose. Because lactose is unfermentable by brewer’s yeast, it adds sweetness, body, and calories to the finished beer.
• Oatmeal stout is a stout with a proportion of oats, normally a maximum of 30%, added during the brewing process. Oatmeal stouts do not usually taste specifically of oats. The smoothness of oatmeal stouts comes from the high content of proteins and lipids imparted by the use of oats.
• Chocolate stout is a name brewers sometimes give to certain stouts having a noticeable dark chocolate flavour through the use of a more aromatic malt that has been roasted or kilned until it acquires a chocolate colour.
• Imperial stout, also known as Russian imperial stout, is a bitter dark beer with a very high ABV (from 8 to 11%).
I think they asked for a bottle of milk stout. Newton and Ridleys? Sheesh where does this ancient knowledge come from. Wish I could remember useful things.
No pub where I grew up so no ladies of any age went to the pub!! Apparently 3 pints of stout contain the same amount of iron as an egg yolk, 3% of the RDA. I'd stick to the egg ...
Oh yes! Mackeson superior to Guinness. Unless it was draught Guinness - fond memories of that real nectar in Rosslare after getting ferry from Fishguard and carrying only a tent!
Far nicer than stout too. When I checked the iron content when my daughter had her first baby it was negligible as was Mackeson too compared to when I had it in hospital nearly 50 years ago
If you do then go to Ireland and drink it in draught form there. It's so creamy and has no bitterness, and is very different from the dishwater they called Guinness I drank in London. Euch!
No, but my wife's old school friend moved there over 20 years ago, and we go over to visit her every couple of years or so. That's when I discovered the difference between what's laughingly called Guinness in London and the real thing you get in Ireland. There's really no comparison, and I won't drink it in the UK at all now, only when we go to Ireland.
hmm .sounds wonderful. A real Guinness in Ireland. Before I got sick last April, Ireland was on my travel schedule for ‘24. My Chicago family is rooted in Ireland. Anyway, maybe not this year, but I will get to Ireland for that lovely Guinness .
When I was first diagnosed with PMR I lost the ability to lift myself out of the bath no strength in my arms at all. Sadly its never returned so showers are the only option
He stopped pred when? September 2022 or 2023? If it is 2022 his adrenal function should have had time to settle down. And sorry, no, no magic potions! If only.
As we age we do decondition quite quickly and a winter without golf won't have helped. Does he use a buggy or does he walk the course carrying his own bag? If he walks - maybe it is worth considering a buggy to save the muscle strength for the really important bits.
Sept 2022---18 months ago. We both walk the course and buggies have not been allowed due to weather but I know he would never use a buggy. He would give up first. Part of the golf now is the exercise and fresh air but I appreciate the point you are making.
Well, I'm just going to have to get some Guinness, for sure. Just today, I visited the rheumy; all is going well, and tomorrow, I will start 1.5 mg of Pred tomorrow. I told him I only had one concern: my energy level. Why do I get so tired after doing a trivial amount compared to ...oh, yes, that was five years ago, and I'm 83. I do have neuropathy and myopathy...so I guess "There's a change in my step. 🎶🎵"
He did say that he recommended a routine of an early bedtime, 9-ish, and up at 7:30. "There have been studies, and there is a lot of data," he urges all his patients to do that (news to me today) to maximize their morning energy and have an ample day to get some exercise and take a rest. I'm going to give it a go and enjoy my senior years. My hat is off to your husband to play as much as he does. Acceptance is different than resignation....as long as he keeps moving. (per my rheumy) My best...💞
Thats good to hear Grammy----I'll get him to try that. Normally bedtime is between 10 and 10.30 and he gets up around 8. Could try that and see how it goes. Im 82 but Happily I have no issues and I play a lot of golf normally. Its my toy boy that has the problems:):):)
I am a little confused about his comment about studies and lots of data ! Maximise morning energy ? I have never had any morning energy what so ever since PMR. My energy kicks in about lunch time . It is sometimes at its best in the early evening. Should we force ourselves to try and change , or go with what suits us best.
Similar here. Takes all day for me to get moving and I have little energy before mid morning. Then lunch sends me to sleep for a couple of hours, after which, I get a second wind (in my case, perhaps my first wind) late afternoon and early evening. If I have jobs to do around the house, evening is the best time for me.
Sorry, for some reason I just saw your reply. To every guidance, there is an exception, for sure. I can relate to what you are saying as that has been my experience at times. In that case I think you should indeed do what suits you best. Our bodies are wise. No, I wouldn't try to force a new routine when what you are doing works. 💞
Do ask him about me - no morning energy, takes until lunchtime to feel human enough to WANT to go out and do things. But then I do - especially if there is the goal of walking to the gelateria ...
🤗🤗 I think that sounds like a great routine! What he was stressing to me was to have a routine bedtime. I can easily burn the midnight oil....I'm so glad you are well...I'm sure you give your toy boy a run for his money. 💞
Yeah--toyboy has confessed he has always been jealous of me for my good health---long may it continue!!!! I jokingly said at our golf club "marry a young man and he will look after you in your old age----not in our house it doesnt:) ) However, he has looked after me all my life and taught me everything I know so its my turn now . We had our Golden wedding last year---not bad as its my second marriage. Not many people get the "Gold" second time around
Playing eight holes sounds like an achievement. But I understand. Used to be able to spend two hours walking in a museum. Now one hour wipes me out. Today I realized that I have to be grateful for that one hour. Have had PMR since Nov 2022.
and there are those of us who can't manage more that a 10 minute walk...none of us knows how PMR and steroids will impact on us...I know people on this forum who are overawed by what others can achieve...we all plod along the best we can..very grateful at least to be pain free (unless we have other problems and there are plenty of PMRers who do).
Someone wrote about "acceptance"...they are so right...it takes time to really get it on board...but it has to be the way forward...sharing on this forum is also a greta help...stops one feeling so alone...and slowly slowly things might improve...a short cut to the 19th sounds a good idea.
Hi. My sister took a supplement when she had long COVID which might be worth checking out - Reviveactive - they do a sports version as well for stamina - assuming he’s not on any tablets that would prevent it. A course of it really helped her at the time get back walking etc
Great news your husband has come full circle and is getting back up to speed…. I’d say patience and small incremental steps, finding that balance between pushing ever so slightly for more every week but at the same time respecting limitations. For golf there are very specific exercises - stretching, weight training and aerobics that would help re-toning muscles. That in turn will help with his stamina. I’d look into his food intake as well. Bircher muesli for breakfast offers the slow release energy that would be so useful in golf. Lots of protein and fiber based foods would help with muscle strength and endurance. So, I guess it’s a combination of all these things plus lots of determination and resilience to build back his fitness… and patience!
Thank you Polygolfer. Ill give that some thought. Our diet could be better but he has a slightly dodgy stomach also so some foods are out but I can try and rack up the protein. He does lift weights in the morning but it doesnt seem to have made much difference. However it is clear from all the replies that he is one of the lucky ones that he has pretty much shaken off the PMR but that it leaves its mark!!!! I just wondered if this was normal 18 months after finishing Pred. It has certainly changed both of our lives but hey---- we are lucky that hes got this far xx
I’d think of it like it’s a recovery from major surgery… physio, gradual ramp up of activities, not much drink, careful food intake, and specific strength build up exercises. A careful holistic approach will also help ensure this thing stays away from him for good!!
For low energy, I would consider taking a supplement which contains B6 10 mg, folic acid 400 mcg and B12. Berocca is a good one, though a bit pricey. The Aldi equivalent is a very similar formulation for a fraction of the price. It also contains some iron and vitamin C, which helps iron absorption. I assume that he has had his iron checked? People with PMR are often slightly anaemic. If the folate is the issue, allow 3 or 4 weeks to see if there is an improvement.
I think that the problem when people have endured forced inactivity for any period, it is hard to get started again, but energy levels do slowly rise with even small amounts of regular exercise. Anything that gets the circulation going.
In terms of strength, I really don't think that you can beat weight training on the resistance machines in the gym. Start with low weights and low reps and slowly build up. Anyone, recovering from PMR would do well to space gym sessions so that you aren't pushing weights on muscles that are still sore from the last session. This will help improve strength and stamina in a safe and controlled manner for other types of physical activity and it is susprisingly aerobic. I used to train with a pulse monitor and a weights session certainly got my heart rate up and the old circulation pumping.
To improve fitness, regularity is essential to get a training effect. Little and often is key to start with and the good news is that it is additive, so several short sessions during the day will help you get going.
I like the idea of the Guinness. If you have enough of it, you won't care anymore if your arms and legs hurt. A lot of calories in it though.
In addition to all his other ailments he does have vit B12 injection every 3 months at the doctors. These seemed miraculous at first but I think hes used to them now so doesnt notice much difference. He does do the light weight lifting and as you say---if he drinks enough Guinness he wont care any more :):)
I find the lack of energy a bit depressing too. It’s so hard to build your fitness levels back up and sometimes even the smallest tasks seem pretty arduous. I have to fight a can’t-be-bothered attitude on occasions. Logically you can break them down etc but I recall my mother whizzing about in her 90’s. I’m just recovering from a flare which started ironically after some physio for a bursa. But I’m glad for the tip about Guinness ! I’m off to buy some immediately!!
Really pleased to learn that my raising the question of Guinness has set off a chain reaction throughout this forum!!!!:):) There will be a separate section soon for alcoholics. Perhaps I'll get commision on sales:):)
We often drift off piste on to the subject of alcohol…. but that doesn’t mean we are alcoholics… 😂🤣.. and it beats talking about Pred all the time. 🤦🏻♀️
Hi thereI've been off prednisone actually since January 2023 but I say March 2023, for the reason I almost died with adrenal insufficiency then crisis.
1 yr later and during the past year I've had struggles with my energy and have read it can take up to 18 mos from other pmr survivors.
Before my husband and I left to go south on March 3rd I was still struggling but this trip has been wonders. I see that my energy is returning. I was in the pool daily and diving but not as much.
I can see that I need to strengthen my legs but since off prednisone I suffer from chronic bursitis of the hip and many hand problems but this trip has opened my emotional state to see a light at the end.
We have to remember that for me it was close to 9 yrs and as we age we are getting much older and our bodies change much more than we were in our 20s, 30s, 40s etc.
I have been off Pred now for 2 months and am feeling the same. Some aches and pains but nothing paracetamol can’t cure. It’s just the slowness and Limbs don’t want to move efficiently and confidence doing things. Am hoping to go back to some sort of normal because was very active b4 . Wish him luck 😊
What your husband is experiencing may be what is called Chronic Fatigue Syndrome (CFS).
You could look it up online.
It is a disorder characterised by extreme fatigue with no underlying medical condition.
Some of the symptoms include:
Feeling extremely tired all the time- you may find it very hard to do daily activities.
Still feeling tired after resting or sleeping
Taking a long time to recover after physical activities
Problem with sleeping
Problem.with memory, thinking and concentration
Muscle pains
Headaches
Flu-like symptoms
Irregular heart beats
Treatments found helpful include:
1. Talking therapy (CBT) as this could be depressing if not well handled
2. Energy management. This is done professionally were you arebgiven advice on how to make best use of energy you have without making your symptoms worse
3. Medicines to control symptoms such as pain and sleeping disorders.
Living with CFS could ve difficult, as you will struggle to cope with the change in your lifestyle and new life demands, but joing a support group made up of people with similar experience has been shown to be helpful .
Couple counselling may also be beneficial as the change in your lifestyle could affect your partner (s*x life, house chores, finances, etc) The role of an understanding partner in your health's journey cannot be over- emphasised
I have been PMR free for two years. The first year was hard as my energy didn’t rebound like it was before and even almost through to the end of the second year, but now I have fully recovered it seems like I have only just recently got back to my normal self. I had developed strange pains in my right wrist and my right hip/leg but I put that down to pulled tendons from doing to much gardening and those are going away gradually. I’d say that it takes a little time for your body to adjust being off pred, but it’s safe to say it will come back to normal.
I was very interested to read all this about lack of energy and stamina after PMR and pred. I have basically been off pred for a year, though had a little relapse six months ago and have tapered again to half a mg at the moment. I too am disappointed in the lack of energy and stamina I have, I know I am now 5 years older than before PMR, but am only 74 and feel I should have a lot more energy.I can do quite a lot, but then have to rest, or am laid low for a day or two afterwards. I have also been plagued with ongoing infections, chest, bladder etc, just don't seem to be able to get properly well. So it's interesting to hear I am not the only one.
The Guiness sounds tempting, but on googling it I see the amounts of vitamin, minerals etc are very small. I hav just started vitamin D supplements, having read VitD is good for fighting infections. I actually spend a lot of time outdoors and live in a sunny place, but apparently everyone needs more VitD than we get, so worth a try .
twice since being diagnosed I have had two separate weeks of the “old me” which gives me hope if I get to the end I go the PMR road my energy and strength will return I am not expecting full strength right away but just having energy to motivate is half the battle I suspect his body is still not producing enough of its own cortisol yet has he had his levels tested? Hope things get better for him
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Mine were a boy and a girl----even more surprising!!!!
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