PMR and chronic fatigue syndrome- is there a link?

[MegfromOz]

Hi everyone,

I haven’t posted before but read all posts and comments daily and find the information very helpful

Here’s my story…sorry if it’s too long…

- PMR started in February 2023

- diagnosed PMR April 2023 after a week in hospital with a specialist and put on 25 mg of prednisone

- appointment with Rheumatologist a week later who confirmed diagnosis and upped prednisone to 30 mg

- following Rhumetologist appointment diagnosed with additional RA went on methotrexate tablets and vitamin d and folic acid tablets

-gradually tapered prednisone by approximately 2.5 each fortnight, to 10.5 in late October but flared and went back to 12.5 on Rhumetologist advice, and changed to methotrexate injections to see if it helped with runny, itchy eyes

So now to my questions…

Is there a link between chronic fatigue and PMR & RA.?

Is it common to feel more fatigued as prednisone is reduced?

Is there a way to manage the fatigue?

Thank you for your help

Cheers

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

Q. Is there a link between chronic fatigue and PMR & RA.?

A. One-half to one-third of patients with either PMR and RA will experience systemic symptoms including fatigue, malaise, anorexia, weight loss, or low-grade fever.

Q. Is it common to feel more fatigued as prednisone is reduced?

A. Yes if your illness is not under control

Q. Is there a way to manage the fatigue?

A. Yes - you have to learn to pace yourself -have a look at this -

healthunlocked.com/pmrgcauk......

..and maybe have a look at this post for general info - I did link in your first post but it won’t do any harm to read again …

healthunlocked.com/pmrgcauk...

[MegfromOz in reply to DorsetLady]

thanks, I have read it all previously but a good reminder.

I was just concerned as it seemed to be getting worse as I lower the pred.

Appreciate all the help

[DorsetLady PMRGCAuk volunteer in reply to MegfromOz]

Probably because as you are getting lower on Pred your illness not as well controlled… despite the steroid and the MTX the underlying illness is still there chugging along.

[PMRpro Ambassador]

There is a link in that the PMR and RA have been regarded as autoimmune disorders for many years and it is becoming accepted that ME/CFS may well also be an autoimmune disorder and there are several common features. Fatigue is an integral part of all autoimmune disease and PMR without pred is accompanied by fatigue as well as all the pain. Often the early higher doses of pred provide a misleading boost of energy so it looks as if the fatigue goes with pred - it doesn't always, I never found pred relieved my fatigue. There are actually a few of us on the forum who had had ME/CFS in the past - I probably had it in my 20s, before it was ME, just "yuppy flu", whatever it was ticked all the ME boxes but luckily it improved over a year or so and then 25 years later I developed PMR.

DL has given you the link for my fatigue post - there are no magic answers, it is all about pacing and management.

[Bluey-1 in reply to PMRpro]

Interesting. I think I had CFS in my thirties. Young child, return from maternity leave, throat virus then oomf, wipe out and off work for two months. Too much on looking back, trying to fo everything at the same old pace. I did recover. Fast forward to 2022 and GCA, fatigue has been a key feature. What is weird is that when I’m good (this last week has felt almost normal) I can’t remember the tough times. I’m pacing well but I still ‘dip’ for no apparent reason. Today is a sluggish one. I’ve been out shopping, sorted some pre holiday admin with technical frustrations (grr) and that’s it. I’m done….book and lounger in the shade this afternoon.

[PMRpro Ambassador in reply to Bluey-1]

Technical frustrations are exhausting! Had a lot of them over the last 2 years and most times once I've dealt with one on a day, I'm finished. Have been down to 5mg for a few months now and the last couple of weeks have been wiped. Last 2 nights I have taken 6mg and the admin crap and buzzing around to do it yesterday and this morning has been a breeze! I'd been so out of breath - no more!!

[Bluey-1 in reply to PMRpro]

Last week I dropped 1mg of pred, couldn’t see it anywhere so took one out of Saturday’s box. As I took the last spoonful of yoghurt I felt something in my mouth, yes, the missing 1mg. I took 7mg that day by mistake but didn’t notice any difference at all.

[Longtimer in reply to PMRpro]

Perhaps you are ready for that caravet!....

[SheffieldJane]

A regular, proper nap is your best friend.

[Longtimer in reply to SheffieldJane]

If only!....

[SheffieldJane in reply to Longtimer]

I am spending ££££s on Audible books lately. They put me to sleep very quickly. A posh warm voice is best. I have to roll them back a few chapters each time when I wake, but a bedtime story is amazing. I go properly to bed in the afternoon and sleep for exactly 90 minutes.. I forget about the chronic fatigue and go to bed around 10pm. If I could fully use the audible book in the early hours, I would get back off better. I have to consider my long suffering mate though. Must get padded earphones.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

You don’t need to spend £££ - join your library and get them for free.

[SheffieldJane in reply to DorsetLady]

I have pretty specific tastes in books but I’ve had a few freebies.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Local library ebooks/audiobooks are link to an international organisation via app - BorrowBox - so you have thousands of books to choose from….

Just check your local council webpage -all you need is your existing library card no [if you have one, if not join] and a code supplied by library to get going… easy peasy…

[Longtimer in reply to SheffieldJane]

I love the going properly to bed in the afternoon!....my sister with RA does the same.....so envious.......Yesterday afternoon felt so awful, have had busier week because of birthday.....laid down, body loved it.......head still awake.

Last night went to bed early...9ish, because of fatigue, went off to sleep, woke at 12, then again at 2.20.......then again at 4am, sometimes get far less than that, it's the keep waking up and trying to go to sleep again that is the problem. I have got a sleep cd....(how old fashioned is that!)....but will definately try your methods....

Thank you

[SheffieldJane in reply to Longtimer]

I often have nights like that Longtimer, I just promise myself a nap and keep calm. It was scary when I still worked. I used a CD with the sound of rain in the past, it was lovely. I didn’t need it this August. 🤣

[Longtimer in reply to SheffieldJane]

So hot last night, should be cooler tomorrow. We have to find what helps us….

Should start lowering Tuesday, going for infusion tomorrow, just hope I can snip a 1 mg successfully!….

[MegfromOz in reply to SheffieldJane]

Yes, I use audio books all the time. Great how you can set it to stop after a certain time. I use wireless headband just put it in one ear. Not sure about UK libraries but in Oz we have a huge selection for free. Thanks for the advice.

[SheffieldJane in reply to MegfromOz]

I have a timing facility on mine too, but knowing me I would lie there waiting for it. But I’ll try it.

[DorsetLady PMRGCAuk volunteer in reply to MegfromOz]

See this reply - healthunlocked.com/pmrgcauk...

[CoziNess]

I don't know anyone with pmrgca who doesn't have some degree of fatigue. And the more you push against it, the more poorly you seen to get. Oh the joys!

[MegfromOz]

thanks everyone for your support.

I think the biggest message is be kind to myself so will work on that and accepting that these are both quite debilitating diseases

[SheffieldJane in reply to MegfromOz]

I honestly think that is the key to all this, acceptance and being kind to yourself.