Fatigue

[Rosina1871]

Hi. I’m new here having being diagnosed three weeks ago following pain early in the morning and then blood tests. I’m on 20mg of Pred and I’m virtually pain free. However the fatigue is really bad. I’m used to exercising and walking everyday and now I’m just exhausted. My question is, will this gradually improve. I feel as if my body doesn’t belong to me anymore. I am 72 years of age. Thanks

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

I would guess that you maybe are trying to do to much. Just because the pain has gone it doesn’t mean the illness has, it hasn’t. The medication is only addressing the inflammation caused by the illness not the PMR itself. Plus the medication can cause fatigue as well.

Have a look at this, it might help you to understand your body better, and take note of the pacing aspect. That’s what most people find difficult - healthunlocked.com/pmrgcauk...

[Rosina1871 in reply to DorsetLady]

Thanks for your reply. At present I am just taking one walk a day. About thirty minutes and having an hours nap after lunch. The rest of the day I’m not doing very much. I just feel spaced out. Could this be the Pred also? Thanks again

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Yes, more than likely. Normally your body produces the equivalent of approx 7.5mg cortisol on a daily daily basis - you are taking 3 times that amount so until your body gets used to the “new” level you will feel “spaced out” .

[Rosina1871 in reply to DorsetLady]

Thank you. Have read the article you suggested and thanks for suggesting it

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Ok,

just my viewpoint, but sometimes we need an explanation from another patient rather than the “official” info.

[markbenjamin57]

Greetings and welcome Rosina

Just my (non professional) opinion, and I'm sure many of Us PMR / GCA Lot will be along soon with their thoughts too...

From experience: the 3 main symptoms of PMR are Pain, Stiffness and DF (Deathly Fatigue - mental and physical). As you say, the Preds usually control the Pain and Stiffness: but the Fatigue typically associated with PMR and many other inflammatory Auto-Immune diseases seems to operate independently. In other words: Pain & Stiffness relatively under control but feeling wiped- out all the same. I put it down to the underlying PMR disease activity - which rumbles on in the background regardless and is known for its Heterogeneity.

Quite a few of Us Lot also report bouts of DF when reducing the Preds, where the body's Adrenal set-up is adjusting to a lower dose and your natural energy battery is depleted. And, of course, other factors including any or all of co-morbidities, injury, infections, undue Stress, Physical over-exertion (in the PMR context) and even the cold, damp, dark Winter weather conditions (lack of natural Vit D?) can conspire in the DF equation. I for one feel much more energised / less DF when the weather warms up and Spring / Summer arrive!

To answer your question: yes, the DF can and often does improve on the PMR Journey, albeit gradually and in Fits and Starts. Unfortunately there appears to be no definitive solution / treatment for it, and Pacing yourself (physically and mentally) are usually Key to coping. I use the term 'Roll-with it' when suffering from the DF: try not to fight it, relax, and keep as active as you can - but within reason. Before you say it: easier said than done if you are used to being very active...!

I think part of the challenge with PMR symptoms (DF especially) is as much about trying to adjust mentally as physically to a new 'Normal'. Either way, you are in very good company here with tons of support, advice and experiences from a kind and thoughtful Community. And, we have some Fun along the way too....

Hope this helps and please keep us posted on your PMR Journey. 'This, Too, Will Pass'

Best wishes

'Uncle' MB

[Rosina1871 in reply to markbenjamin57]

Thank you so much for your detailed reply. I think mentally and emotionally getting my head around this is very difficult as it literally came on overnight. I keep expecting to wake up feeling “normal” although, of course, I know I won’t. I have an excellent doctor who picked up the condition straight away so I am very fortunate. Pleased to hear the warmer weather can help. I put myself on a low carb anti inflammatory diet as soon as I was diagnosed so I hope this will also help. I have lost 5lb already but I’m sure this will eventually change direction. Thanks for your advice

[markbenjamin57 in reply to Rosina1871]

All part of the service :-). Yes, for many of us, the often sudden onset of PMR is the start of a mental / emotional journey of adjustment as much as a physical one. Although not Life Threatening, PMR (and GCA) is a Life Changing one all the same: and causes many of us to re-assess our lifestyle (sometimes for the better?) until or unless it goes into remission. On the positive side: for many, it can and does in time. Your GP sounds like they have the right approach - look after him / her!

[Rosina1871 in reply to markbenjamin57]

My gp specialises in skeletal and muscle conditions so am very fortunate. She says at least one person a week is in the surgery with PMR. I didn’t realise so many people suffered with it

[Linny3 in reply to Rosina1871]

Hi Rosina1871

The sooner you can just except what has happened to your body, the easier it will be on you. I fought it for 1 year thinking I could fix it. I spent a lot of time and money on self helps. Nothing helped, only the prednisone. Emotionally I am in a much better place. I am not trying to "hurry along" this disease. Good luck on your pmr journey.

Take Care

Lin

[PinkertonCat in reply to markbenjamin57]

“DF”. Thank you for this term, that is exactly what it is

[markbenjamin57 in reply to PinkertonCat]

Greetings and thanks PinkertonCat Well, the 'DF' is my best description for what is arguably one of the worst symptoms of PMR and related Auto Immune Illnesses. And yes: as difficult to cope with mentally / emotionally as the physical ones like PMR related pain and stiffness...

[PMRpro Ambassador]

Have a read of this post - it may help you "get" what is going on:

healthunlocked.com/pmrgcauk......

The pred is only managing symptoms, the disease that is the cause of those symptoms continues to chug away in the background, making your immune system attack body tissues in error, not being able to recognise them as "self", and leading to cell damage and production of inflammation. The damage done causes you to feel as if you have a flu-like illness - and as I said to someone with similar questions a week or so ago: would you be surprised at how you feel if you were told it was flu you had?

Try splitting your walk - either find a suitable place you can sit and have a short rest half way or split it totally into 2, morning and afternoon. I could manage far more when I walked to a chosen destination, had a leisurely lunch/drink and walked back.

At the stage I am at I find that flares tend to last a few months and over that time the fatigue that is so obvious at the start does slowly improve, allowing me to walk further and further. I find it is worst in my thigh muscles - which is where it was worst right at the start - and so that does make me more tired when I walk. Cold doesn't help either - my quads get cool and start to ache more. This week it is -16C overnight, struggles up to nearer freezing with glorious sunshine during the day but my legs tell me about it when I have to go out. The weather is about to change to damper and less cold - and I can feel it, I always do. Winter is no friend to PMR.

[Rosina1871 in reply to PMRpro]

Thank you pmr

[Noosat in reply to PMRpro]

It sounds like you are describing me ! I do fond that my left quad is more painful and weak than my right. Alas, the left used to be my strong lead running leg.

[Hidden]

Hi Rosina, Welcome to the club "nobody" wants to join! I'm sorry you had to join us, but happy you found us so early in your journey!!! I have both GCA & PMR and "yes," in the early days the fatigue was relentless. I could not make the bed, walk 1/4 mile to Waitrose... or walk up one flight of stairs. It gets better, hang in there. Try to get as must rest as you can. sit, read, watch TV write letters to old friends... and take naps!!! On good days, if you feel like walking take a short walk and rest afterwards... Don't overdo it!!!!! Best of luck and I hope you shake off the fatigue soon!

[Rosina1871]

Thank you so much for all your informative, helpful posts. It means a lot to me

[piglette]

Hi Rodina, I am so sorry you have been diagnosed with PMR. Sadly PMR is life changing and fatigue is one of the symptoms. You have to learn to take life easier, you can then slowly build up to a point where you still feel OK. PMR does tend to turn round and bite you if you overdo things. You have to learn that it is in control!!

[Rosina1871 in reply to piglette]

Thanks Piglette. I have cut my exercise regime by two thirds and hopefully that will help . Appreciate your advice

[piglette in reply to Rosina1871]

I gave up an awful lot, I was so active and did lots of charity things too as well as working. In some ways it helped me to say no to things instead of always saying yes, I started to pamper myself more instead of thinking of others all the time. I suppose I have now turned into a selfish old buffoon!

[Rosina1871 in reply to piglette]

Certainly not. You are now helping newbies here giving sound advice. I hope we all go into remission in the not too distant future. I’m trying to stay positive but realistic

[piglette in reply to Rosina1871]

I have learnt to give in to PMR rather than fight it. You are doing the right thing staying positive.

[Pollypuds in reply to piglette]

You are just being kind to yourself and listening to your body needs. Definitely not a selfish old buffoon😊

[GOOD_GRIEF]

I read here all the time about "cutting carbs drastically" to avoid weight gain, but I have to tell you that when I tried low-carb diets before PMR and pred, I was always fatigued. While I have experienced some periods of fatigue, especially at the beginning before I got treatment, and until I started sleeping better on lower pred doses, I really never had the ongoing deadly fatigue so many speak of here.

I've gained and lost 7 pounds over my PMR journey (entering my third year), and I cut carbs that were empty calories - no nutritional value. I still eat cereal and oatmeal and bread and pasta and potatoes and fruit.

Oh, and my blood sugar hasn't budged.

I'm no medic, and can only relate my own experience. But maybe the mad carb cutting is a fatigue contributor.

[Noosat in reply to GOOD_GRIEF]

I did not cut carbs, but have to say I do not buy processed food. Although not a sweets eater, I examine food for sugar content as sugar can cause inflammation. I watch my diet carefully, eating lots of leafy greens, make ginger tea with green tea and so on. So I know my fatigue is not related to diet, but rather the disease itself.

[GOOD_GRIEF in reply to Noosat]

As I said, I'm not a medic, only presenting my own experience and speculating.

[Rosina1871]

I still eat oatmeal and loads of fruit but I’ve never been a big carb eater. This fatigue is definitely not related to my diet.

[Hidden]

Hello Rosina & Welcome 🌺

As you will have already noticed there is a lot of help & information here, you have landed in a good place early on!

Please rest these first few weeks, let the Pred do its thing while you adapt to a new way of life, for hopefully as short a time as possible.

Very Best Wishes

MrsN 🌺

[Rosina1871 in reply to Hidden]

Thanks for your encouraging reply. I’m certainly pacing myself more sensibly and spending more time on my iPad!,

[Hidden in reply to Rosina1871]

Good, your Computer Skills will improve plus your OnLine Shopping Skills!

Keep your Energy for the Good Things in Life & take any help that’s offered! 🌺

[Pappowappa]

Hello, I had terrible fatigue for a long while and lost 2.5 stone. I am please to say I am now not so tired and regained my weight. I just started walking 40 mins day and doing a little yoga and reflexology. I also have severe depression but that is also just beginning to lift. I am coming up to 71 and have PMR and Seronegative since a month before 69. I started wellwoman over 70 vitamins as I didn’t eat much at all and still no appetite, and all my bloods are fine. I don’t take on day of methotrexate.

I found fatigue one of the worst symptoms. I hope you overcome soon.

Regards ❤️🐶🐾💐. Take care

[Rosina1871 in reply to Pappowappa]

Thank you very much. Pleased you are feeling a little better

[Pollypuds]

Hi, yes I'm finding energy levels and fatigue need me to allow myself to regulate what I do from day to day. Can't plan ahead much but I'm lucky enough not to be juggling work with this strange illness we have! It's a learning curve I'm finding and thanks to the helping hand of advice from actual sufferers on here makes it easier to get help. I now class catnaps as medicine and don't fight against them anymore!

[Rosina1871 in reply to Pollypuds]

Thank you pollupuds. I have started to rest after lunch and managing to sleep for about 30 minutes which seems to help

[markbenjamin57 in reply to Pollypuds]

I agree Pollypuds. There's nothing wrong with taking an Afternoon Nap - even if it's in the Morning..!

[Telian]

Welcome Rosina.

You've had lots of advice already and key is don't get stressed about not being able to do the things you've been used to. This illness is a life changer and doesn't respond well to stress so acceptance is important - fortunately you have found this site early on - gaining valuable tips and most of all saying you're not on your own - as long as you listen to your body and take things at a slower pace your illness will respond better and you're more likely to have a steady recovery as opposed to trying to rush it. If you need further help there's always someone around to help. Best wishes.

[Rosina1871 in reply to Telian]

Thank you very much Telian