I would be interested to know if anyone has found a genuine energy boost? be it food or drink.
Having been pretty fit, healthy and taking part in active sport for most of my life without taking any forms of supplements, in April 2022, I was diagnosed with PMR which has knocked me back to where I did not beleive I could go, I gained a lot of weight, lost a lot of energy and have deminishing muscles.
I have been positive and determined to keep on top of PMR, followed all the guidance I could find on this very helpful Forum.
Since reducing to 7.5mg of Pred in September 2023, I have been following DL's 5 week slow tapering regime and with just a few glitches, I am currently reducing from 3.5 - 3.0mg
I feel absolutely drained - low as low - lifeless - no energy - no strength - but absolutely determined.
Can anyone recommend something that will genuinely boost my energy?
If it is a receipe I will make it, if it is a supplement what is it called, if it is food or drink, tell me what it is and I will buy it.
I am prepared to try most things but I would like to know that they actually work, rather than marketing blurb that says it works
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I would not say food or drink gives me an energy boost as such, while swimming really boosts me and I feel much better afterwards after my swim than before it.
At the moment and in your situation, I would say only your adrenals perking up will do that…this link has suggestions that may help -but to be honest, if there were a silver bullet , I’m sure we would have heard about it on here by now!
No - nothing will improve the fatigue that is associated with an autoimmune disease except a cure for the disease and in the case of adrenal insufficiency, the adrenal function getting back to normal. If there were, there would be a lot less people asking because the medical community would welcome it will open arms, use it and would have half as many patients queuing for an appointment!!!
The last time I saw Max I said there are things to ease pain, but fatigue…..I said whoever finds the answer to treat it will be famous and wealthy,….he agreed. Surely with autoimmune diseases that produce fatigue there’s a pattern as to why and where it comes from……it needs far more research!
Could it be that your strong determination is a bit of a double edged sword? On one hand it enables you to deal with all the weirdness that is PMR but on the other does it hamper your ability to cut yourself some slack when it comes not fulfilling your objectives due to the physical restrictions of the illness and its treatment?
I am so sorry to tell you that nothing I tried seems ot help....didn't use supplements but spend my minimal physical energy preparing the most health giving meals...even beetroot juice because it is meant to help muscle recovery...kale, broccoli, salmon, homemade bread occasionally, veg packed soups, bone broth...I do hope I have done some good..but energy levels still scrape along...it is so hard...but there are people on this site who have got through it...and you are determined...my determination has somewhat waned..,I must get it in gear again
Thinks it's all been said already but from a mental point of view I think your best option is to accept that the only way past this stage of both your PMR and an Adrenal System that hasn't yet woken up is patience and a determination NOT to do too much or try to be too active. This may not be what you want but once accepted you can tailor your life around what you can do at this time. The prize is that it does get better with time. As PMRpro says it's possible that the ongoing research into Long Covid may come up with answers that may help the PMR community.
Time, patience and gently building up your exercise routine is what I would recommend and is what I did. Even then it takes time. Sleep well, avoid regular alcohol intake, eat healthy and anti inflammatory foods, avoid ultra processed foods, get all the rest you need. Your body will restart working properly, but it will take time.
I’m afraid there’s no miracle cure for the fatigue, you just have to wait for your adrenals to wake up. It might be worth asking your GP for a cortisol test once you get to 3mg or lower. On a more positive note I’m tapering from 3.5 to 3mg as well and have just started having a bit more energy and doing small jobs that have been on the “to do” list since I was diagnosed and actually doing housework which had been neglected a lot until now.
Hi - I don't think I've had the extreme symptoms you are experiencing but the one thing I started prior to diagnosis was acupuncture. I've carried it on and found relief from symptoms and also a boost to my energy. I went to someone associated eith the British Acupuncture Council do not a physio or dry needling. It's not cheap but I wouldn't give it up - I feel a real boost of energy.
The other thing to try is yoga where you are doing any kind of opening movement or back bend ( start very small). These movements stimulate your adrenals. There are some exercises you can do on the floor that open your chest. Plus breathwork might help.
I'm trying anything to get my adrenals going - not sure how its going to go as I hit the lower doses / am now on 8mg but we will see.
A good diet will also help - make sure you are eating a balanced plate and getting enough protein and a good variety of veg.
I find it helps if I make sure to get enough both with meals and also a snack with some protein in between meals to keep blood sugar even -- I often make a smoothie from fruit juice and some protein powder. Cheese and an apple. Peanut butter and a whole grain cracker or also it's good on an apple! Etc.
I take a Berroca when feeling particularly drained and needing a boost. B12 can help with energy and these contain primarily B and C vitamins. The extra glass of water might be helping too - dehydration can contribute to tiredness. I used Berrocca before I had PMR to help me through full-on times at work. Read the label though - there are other vitamins in them and you may not want to double up with other supplements you're taking. As others say, with PMR things are different and time and rest, good diet and some exercise are important.
I am a Berocca fan too. Actually, it is one of my old products that I worked on. Aldi have an almost identical product, give or take a couple of micrograms, for a fraction of the price. It is called Active max Energy Release.
I don't think there is anything particularly magical about it, but it does contain a good balance of vitamins that are important in the various metabolic energy pathways. I tend to think it is the folate and B6 that I would otherwise be a bit short of. I do feel better when I take it regularly.
I find that half an hour of gentle stretch exercises at the outdoor gym nearly always eases my discomfort and improves how I feel in body and mind. It surprises me. But for extreme fatigue my go-to recovery position is lying down, remaining completely immobile for hours on end, possibly sighing, and trying to un-knot the tension in my gut. But I have to admit that I have temporarily paused the struggle and am toggling between 5mg and 6mg Pred instead of staying at 5mg where my symptoms were returning.
Personally, I do not believe that there is any magical elixir. The illness itself causes fatigue and so can the pred and the adrenal suppression. All you can do is take good care of your health, eat a sensible well balanced diet, exercise within your capabilities and without overdoing it, get plenty of fresh air, and get sufficient rest and sleep. And don't allow your self to get too hungry. You need well spaced meals to even out your energy intake through the day.
I also find that pacing myself is important. For any big jobs, I do a bit and when I feel myself flagging, I take a break, a cup of tea etc, and then start again when I feel rested. I can keep going most of the day, so long as I take frequent breaks. It just takes much longer to get the job finished, but that's how I found enough energy recently to empty my garage chock full of junk.
Berocca was mentioned elsewhere and I personally do think it has a role in making sure that you are getting the essential vitamins that you need, as part of a healthy diet. But if you aren't otherwise deficient, it may not appear to be as effective.
I wouldn't recommend any of the so-called energy drinks. They can be high in caffeine and other additives that disrupts restful sleep in some people, which would be counter productive, and most are high in carbs and/or sugars. Not good at a time when we need to avoid high blood sugar when on pred. Anyway, I find that anything that raises my blood sugar makes me even more sleepy.
Which reminds me, have you had your hba1c tested recently? Fluctuating blood sugar can make you feel even more tired.
Thank you, I have regular blood tests at both GP Surgery (prescibed Prednisolone) and Hospital (prescribed Methotrexate), hopefully between them they are testing for everything that needs to be tested? I am waiting for the latest GP test results expected today
I have now received the results of my blood test and more than half of the items are highlighted in red !!!! they came with an accompanying note saying further tests needed as "they show some anemia parameters" this might partly explain why I have no energy and feel so low at the moment.
I do not understand the various numbers but 7 out of 13 items are outside the expected ranges.
Mild anaemia is common in chronic illness - and can be a symptom of PMR/GCA.
The red marked figures are mostly not greatly outwith the normal ranges - but the computer flags them even though they are consistent with your medical history and medication. There are a lot marked simply because they are interlinked.
What surprises me is your white cell count and neutrophils being low - that is common in rheumatological conditions but less so in PMR. However - on checking, I see you are on methotrexate. Have they not been monitoring your blood levels closely? MTX is a common culprit for low neutrophils and usually if they are low, they pause the MTX until they recover - although I am not sure at what level they draw their lines. It is something to check with your GP/rheumy as soon as you can. It can cause fatigue as one of its symptoms. Your anaemia isn't severe, but in combination with the neutropenia it probably isn't helping and then there is the adrenal insufficiency on top.
Thank you, I did have a Rheumatology blood test about 5 weeks ago, I understand they are monitoring the Methotrexate; followed by Consultation with Rheumatologist who has actually suggested I raise the dose from 15mg per week to 17.5mg per week starting next week. I will put that on hold and ring Rheumatology re Methotrexate and these results which I understand they can access.
I have a further GP blood test booked for next Wednesday.
Hi Golf-1 just to add, I find that eating protein before carbs at breakfast prevents too much of a slump at 11am. So I have a boiled egg before eating a piece of toast. But I know this might not make any impression on true adrenal fatigue.
I am cautious with caffeine but it certainly gives me a much needed boost. I only just started on green tea to help with gastritis, but it works for me. Local pure honey is like an elixir, I totally recommend it.
interestingly I found I felt great for about 72 hours after my synacthen test last Thursday which made me wonder if the product itself could be used to treat fatigue.
I am at 3.5mg with no plans to attempt a taper while going through a lot of medical investigations and my GP happy about this dose. But I am far from happy trying to cope with the fatigue which is grim.
When I get the result of the synacthen test I will know if I can fast forward the taper without becoming a zombie! I am not looking forward to a slow taper and many more months of this lingering shadow life. My sympathies.
All the synacthen test tell you is that your adrenal glands CAN produce cortisol when kicked hard with ACTH. It doesn't mean they are doing so reliably and consistently - as a few will tell you. Their synacthen test is fine, but the reality is a bit different,
ACTH from the pituitary is part of the complex feedback system that produces cortisol. It isn't necessarily a problem with ACTH production though, there are a lot of factors, all of which must adjust themselves before the entire system works properly.
Even as little as 2mg pred is enough to suppress production of ACTH so not enough cortisol is produced and like a car engine, lots of little things need to be right before it runs OK. There is a lot of investigation required before a doctor would conclude that your pituitary has failed and that is why your cortisol is low - but the treatment isn't ACTH, it is pred or cortisol as a replacement therapy.
Thankyou PMRPro, I am finding all this endocrine stuff very difficult to comprehend. In my own case I have been diagnosed with a pituitary adenoma and due to meet with the Neuro team at Brighton early next month. I have no idea what lies ahead. Brain fog and fatigue are making all this more so much more challenging and especially finding the energy to attend a lot of hospital appointments along the South coast.
I was diagnosed in August 2022 and can 💯 relate to every word in your post today. At the age of 64 and newly retired I felt like I had the best outlook for the future and couldn’t wait for all the amazing opportunities to come. When I was diagnosed with PMR and immediately put on Prednisone, my response to it was almost immediate and I was so grateful that I felt like the worst was over and my doctor had caught it in time and there had been so little disruption to my life. Two years later and just like you I am determined to get my health back but the loss of muscle tone, extreme fatique and often just straight out confusion on how to proceed and how long I will be feeling like this means I have to put so much daily energy into trying to reduce prednisone, take or not take an add on of a second drug which is a steroid sparer but comes with its own set of complications and side effects. I wish you the very very best and want you to know there are a lot of us out here rooting for you!
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