Are there any successful of the shelf energy drinks or bars that work?
From being an active person pre PMR diagnosis 2 years ago, I now have to take a few breaks when mowing the lawns, I cannot walk round a golf course as I used to, and walking back from town (only 1 mile) that involves some inclines, I need to have regular stops.
My muscle mass, especially in my legs has greatly reduced, I am permanently tired, and feeling very lethargic.
This is all very disheartening, and although I seem to be managing Pred Tapering;-
I NEED A BOOST - ANY IDEAS and SUGGESTIONS will be seriously CONSIDERED
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Golf-1
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I do feel for you. I wish there was something reliable that could give us a boost. Many products offer to but I think they are aimed at the young gym bunnies.
I hope the GP has not given you a 2 year estimation for PMR - this has been busted as a myth and it can be very disheartening to reach the deadline and not be free of the disease. Day to day it helps to pace your activities with plenty of rests on either side of anything strenuous. A day time nap is a great boost. We simply cannot do what we used to do. Although gentle exercise like Pilates, Tai Chi, Aqua Aerobics or gentle gym classes that are designed for people in our position are good - my local Nuffield Medical Gym does a 24 week free course.
My Rheumatologist did numerous tests to discount co-morbidities. I have had a number of scans ( MRI and CT). I have also had Cardiology tests and seen an Endocrinologist. After 4 years of PMR, Non Cranial GCA /LVV was diagnosed by A Vascular ultrasound scan which unfortunately sent me back to the beginning on a higher Pred dose. This is a possibility when you don’t seem to be getting better. I am due to see an Endocrinologist again now that my second round of tapering has reached 4.5 mgs. He may discuss using Hydrocortisone to stimulate my Adrenals.
I sincerely hope that your journey proves to be more straightforward and you are back playing your best golf in good time. Your symptoms are fairly typical but you might be driving yourself too hard. If you haven’t already, the input of a good Rheumatologist could help you. The average time PMR lasts is around 5 years. I hope this is useful!
It all depends what it is you mean. These so-called energy bars are only sources of simple sugars to give your body a short-lived sugar boost which supposedly gives you quickly available energy together with caffeine that has a similar boosting effect - like a cup of coffee.
Your problem isn't that, your problem is deconditioning of your muscles so, effectively, you are "less fit". You are also 2 years older than you were then and, because of aging, it is more difficult to rebuild that muscle conditioning and energy bars or drinks won't do that. You may find that increasing your protein intake helps though it depends on how much you are eating anyway. You may also find a slow progressive exercise regimen helps - you can't suddenly expect to exercise like you did pre-PMR after 2 years - you have to get back to it slowly, very slowly, initially. SnazzyD says she had to get in training to be able to go to the gym in the first place! Even as simple an exercise as walking needs to be trained for - but starting with a short walk and building up slowly. And walking on uneven ground when you have PMR can be very tiring - which may be why you struggle with the golf course walking.
Looking back at your previous posts I see you complained some time ago that you have puffy lower legs and ankles and easily get out of breath, Do you have any cardiac problems at all? For the last few years I too have had rheumy staff on at me about puffy ankles and saying I should wear compression stockings - in their dreams, I can't get them on! Never any comment from the cardiology lot though. In January I finally had an ablation for quite severe atrial fibrillation which developed after the bivalent Covid jab - and immediately the puffy ankles have gone entirely and I can walk up the hill into the village without even being out of breath, never mind having to stop. The puffy ankles were no worse with the much worse AF than they had been with almost unnoticeable and infrequent AF. But it was obviously linked.
It may be worth asking for a check - though paroxysmal arrythmias, by their very nature, often are quite tricky to pin down. A smartwatch is a good option there to get an idea of what is going on over longer periods of time.
Thank you ladies that is a lot to take in and it will probably take me another half hour to Google what some of those words mean - I enjoy doing that.
Interestingly, I have just had a telephone appointment with my GP who has asked me to book another blood test , my latest test showed RBC (I am learning the lingo) at 4.29 and Neutrophil Count at 1.76, both low but probably due to Methotrexate.
After discussing my ongoing fatigue, she also wants to test my Sugar Levels?- so as I have been hanging on the telephone for over 20 minutes to book an appointment and then got cut off once down to number 4 on the calls waiting list, I am off to the GP Practice to book with the secretary.
Sheffied Jane, I can assure you my GP has not put me on a 2 year or any other timetable, it was mentioned in passing when I was first diagnosed with PMR, but has not been mentioned since, and I realise from this Forum - there is no timetable - because even if you think you are over it, it often comes back - cest la vie
If you are on methotrexate - that is a very likely cause of fatigue. I had to stop MTX because of it because after 3 or 4 weeks the fatigue only lifted the afternoon when I was due the next dose!
I am also a Berocca fan, and not just because it was one of my old products that I did a lot of work on in my professional life. For anyone who wants to save a bob or two, the formulation of the energy formula from Aldi is almost identical, give or take a few miligrammes, and is a fraction of the cost.
The reason that I think it is good is because is has the essential nutrients that are so important in the various energy pathways and production of red blood cells, such as B12, B6 and folate, some iron, and also Vitamin C, which helps absorption of iron.
Though I can't say that I have ever got an instant buzz from it. It is a multivitamin, multimineral supplement only. I used to take Berocca when I could get it for free and then lapsed, even knowing that B6 and folate have always been an issue for me. When I was struggling really badly with PMR fatigue, I started to take it again and it was 2 or 3 weeks before I started to notice a difference. I really think you need to take it daily to see a real benefit, if it is going to work for you.
For those people who say that they get an instant effect, I wonder if you are taking on board enough fluids?
I’ve been taking Berocca multi Vit dissolved in water. I’m working hard to reduce steroids with the help of Lefluomide. It does seem to give me a boost when struggling. Swimming helps…a lot, although it’s an effort at times to get to the pool.
Hi, I am 4 years into PMR and over a year ago had a really low patch, including no energy, I was just dragging myself around. Dr suggested a combination of B12 (labelled "energy" in the Boots range), Folic acid (labelled "pregnancy") and a multi-vitamin. I started taking them (this was around November 2022). No overnight results but I did get over that low patch and am generally energetic enough to keep up a gentle swimming / exercise regime. I'm still on 5/6 mg Pred a day. Also, remember how important protein is "the building blocks of life"! Make sure with every meal, three times a day, you are eating protein. I add protein powder (vanilla flavour) to my morning breakfast and sometimes have a protein shake mid afternoon - with strawberries and banana - tastes nice and feels like it is good for me! Protein will help to repair and re-build muscle. Good luck!!
Hi, I have GCA and lost a lot of strength, muscle and stamina very quickly at the onset. I was weak and withered for a year or so and then started to eat a carnivore diet (meat, eggs, dairy). I regained muscle and strength very quickly and felt so much more energetic.
I kept it up for 6 months and then it was Christmas! However, I’ve been thinking of doing it again at intervals.
This is just my experience and not to be taken seriously!!
I think that there are so many accumulative reasons for our tiredness and fatigue and pro has already highlighted some of them, but I think it can be hard to pinpoint exactly what is going on for us as individuals without a bit of trial and error. I agree with her about the energy bars and energy drinks. Their correct use is much more for endurance sports to keep going when it is not convenient to eat. And in any case, most of us are trying to avoid too much sugar to avoid diabetes caused by the pred.
If the cause of your fatigue and lack of stamina is due to your illness, the muscles are likely being deprived of oxygen, due to the inflammation, and I would also expect a corresponding inability to remove breakdown waste products from the muscles. Ironically, anything that increases the circulation is more likely to help, but then you have to be careful not to overdo it. I find the resistance machines at the gym in combination with swimming very helpful. The weights will help to strengthen the muscles and also improve circulation, but keep to a manageable load and don't lift so heavy so that you are straining. The resistance machines enable you to do that safely with your body supported and within the right plane of movement. With PMR, do not do a repeat weights session until you have recovered from any the soreness from the last session to lessen the risk of injury. My fatigue vanishes as soon as I get in the pool, especially of the water is on the cool side. Regular swimming also helped to build up my stamina.
Pred itself, can make you tired, and tapering can also make you tired, if your adrenals aren't keeping up. You also need more rest with an auto immune illness so overdoing it can contribute. Iron deficiency is also said to be quite common in people with PMR. And it has been suggested that you need to drink more with PMR. Certainly pred makes me need the loo more often, and even mild dehydration is well known for causing lethargy in susceptible individuals. Pred causes diabetes in some people and high blood sugar can make some people feel sleepy. The possibility of other comorbidities has also been mentioned.
Anyway, the point of all that waffle is that you are more likely to benefit from careful life style changes and working out if any of the above apply. It sounds like you are already in discussion with your doctor about other possible contributing factors. Atm, my main energy management strategy involves taking a post luncheon nap. I am always more sprightly from mid afternoon onwards.
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