Fatigue prior to PMR

[bunnymom]

Did anyone experience severe fatigue several years prior to PMR diagnosis? I out of the blue could barely get off the couch. Diagnosed as depression but never felt it was. Not sad or depressed...just terribly tired. Took medicine for several years with constant weight gain. After two years stopped and 7 months later PMR. Have wondered if there was some link. We are always wondering aren't we?

[DorsetLady PMRGCAuk volunteer]

Hi,

I had fatigue steadily getting worse along with the pain before I was diagnosed with GCA. It started about 3 months after the shoulder pains and got exponentially more severe for the next 15 months. Not like yours, but definitely a symptom of untreated GCA and PMR.

[PMRpro Ambassador]

I've mentioned a couple of times recently, I had what would now be called ME when I was in my mid-late 20s which lasted for 6-8 months although the fatigue took about 4 years to go way, and later, in my 30s the fatigue returned and improved dramatically with HRT. Some months after I finally stopped the HRT because of the latest scare story - PMR started to creep in.

I think they were autoimmune problems that burned out - trouble is, the PMR doesn't want to...

[bunnymom in reply to PMRpro]

I saw that on another post. What s ME stand for?

[PMRpro Ambassador in reply to bunnymom]

What used to be called yuppy flu - myalgic encephalomyelitis

[bunnymom in reply to PMRpro]

I could feel inflammation in my body before the diagnosis. That was in the summer. No pain and no signs in blood tests. Didn't show in tests and with pain till Feb. Knew something was seriously going wrong.

[BirmLiz]

Hi Bunnymom,

Back in 2011 I started to notice a lack of energy, loss of strength and aching shoulders. The shoulder pain came and went - all us sufferers seem to be driven people - give the pain a rub, maybe take a couple of tablets and then carry on! During the next two years I really found it more and more difficult to summon up the energy to do my usual things and boy did I get ratty with people instead of being chilled with them. The urge to exercise left me as I struggled to get up off the floor, but I never thought to get myself checked out, they were such vague symptoms. PMR hit me in the middle of 2013 so I would say yes, the fatigue is a symptom.

All the best to you and your journey with this unwelcome companion x

[bunnymom in reply to BirmLiz]

You as well. It's a strange journey.

[Yellowbluebell in reply to BirmLiz]

I started anti depressants back in 1998 when my dad died and it took a long time to find the right one and eventually got put on amitriptyline which worked fantastically and I felt almost back to normal. I then injured my shoulder scuba diving and a manic round of surgery started in 2002. I had 8 operations on my shoulder then it was replaced in 2016. No one mentioned anything else except depression (didn't think I was still) and injury to shoulder but they also said the antidepressants worked on muscles as well and was advised to stay on it. I blamed my fatigue on the fact my shoulder was stopping me sleep due to pain. I actually carried on diving but I gave up in 2015 before the replacement and to be honest I should have given up before but I am stubborn to the extreme. I dont know exactly how long ago prm started in me but definitely since my replacement and very probably earlier than that and fatigue was there for many a year before my shoulder replacement. I did get checked out but saw a different to each time and they kept saying all my symptoms were due to my shoulder and lack of sleep. It wasn't until I saw the senior partner in the practice at the end of Sept 2018 that prm was mentioned. So like others have said fatigue is definitely a symptom!!

[Louisepenygraig]

Yes. I realise now I have probably had mild fibromyalgia for years even though i wasnt diagnosed until this August. I would say it was a year or two before I was diagnosed with PMR that my fatigue got a lot worse but every time I went to the doctor my blood tests were always normal and I never followed it up. In August 2016 my blood tests were normal but between then and Feb 2017 things happened that showed my body was telling me that, at times, i was overdoing things. I fainted right out once on a train, threw up on a car journey when I'd felt fluey when i woke up but thought I'd be OK if I took a couple of paracetamol, and very nearly fainted right out another time and then threw up. Each time was when I was involved in meetings of a group I was part of and I think basically I was overdoing things! My body was saying no. In that time i was geting some new aches and pains in neck and shoulders. In February my ESR was raised and the doctor said he thought I might have PMR and tested it by trying me on steroids which worked immediately. Again any aches and pains and stiffness were relatively mild. I suspect I'd been developing the PMR and was possibly still in the early stages.

[SheffieldJane]

I definitely wasn’t right for ages before my diagnosis. Low mood and low level flu symptoms. I am hoping it comes off the 6 years figure!

[bunnymom in reply to SheffieldJane]

Yes indeed I like your Math. 😊

[leonardswife]

I had severe fatigue, brain fog and general aching some months ago so I assumed that my PMR was coming back after 2 years off Pred. Blood test did not show inflammation but did show I was low in Vitamin D, so after 3 months of Vitamin D supplement I was so much better.

[bunnymom in reply to leonardswife]

That is good to know. Will keep in the back of my mind. Thanks

[patriciawhite]

It took my doctors 2 1/2 years to diagnose it . Meanwhile I worked exhausted and in terrible pain .I drove for a living and as self employed I lost as lot of work and revenue . I just had to carry on ,It is so easy for them to try the prednislerone and see .Nope they just kept giving me useless painkillers and making me feel like a hypochondriac .

[powerwalk]

Well I had ME and Fibromyalgia for weveral years - so quite fatigued to say the least - but then suddenly went down several levels of fatigue - I thought it was the Fibro getting worse - but it turned out to be the PMR!! So definitely fatigue is a big part of it.

[susanhogan]

Has any one experience blurry eyes using the pred for PMR? Like a haze over your eyes? Not sure it is the pred or not. I did see the eye doctor and that is not it.

[PMRpro Ambassador in reply to susanhogan]

Have you got any problem with dry eyes? I have something a bit like you describe - it has been worse the last few months but I have put it down to dry eye.

[bunnymom in reply to susanhogan]

I feel like I can never see but I've had cataract surgery and new glasses. Dr says my vision is better. I blame pred of course.

[susanhogan in reply to bunnymom]

Thanks for your reply. I just had cataract surgery, too!! Same thing - eyes are good.

It is helpful to know that others might have the same thing - not that you want the blurry eyes, but it makes you realize maybe you are not going nuts!!! When in doubt, blame prednisone

[PMRpro Ambassador]

I've just remembered - there is a study:

tandfonline.com/doi/full/10...

It's a bit numbers/statistics orientated and they say:

"This study suggests that patients diagnosed with PMR are more likely to have consulted their general practitioner (GP) for fatigue before a diagnosis of PMR is made, with a proportion of these patients consulting multiple times for fatigue. However, there was little association between PMR and consultation for sleep problems, either before or after the diagnosis of PMR was made."

[bunnymom in reply to PMRpro]

Is fatigue included now in diagnostic criteria?

[PMRpro Ambassador in reply to bunnymom]

Suppose it depends which ones you look at but fatigue is mentioned in all the criteria I have ever seen. But then - fatigue is a part of almost all a/i disease.

[bunnymom]

I was diagnosed so quickly when the pain started because the month before I went in feeling like a truck had run over me and I got a 5 day steroid pack. Wow I felt like I was 15 years old! I mentioned this to the Dr and also how much better my legs had gotten and he said PMR and next time I see you you'll be much better. (After the blood results) Interesting study. Thanks

[BonnyQuine]

Hi Bunnymom

I did experience some bouts of depression over the years, and had what was called a 'nervous breakdown' around ~25 years ago. Those all involved varying degrees of fatigue. I think the depression had its roots in childhood, and the 'nervous breakdown' was precipitated mainly by stress and overwork. I always avoided medication, and aimed to recover by changing my environment and aiming for a healthier way of life - not as simple as it sounds! I suspect that childhood trauma is always with us, and probably contributes more than is realised to adverse health outcomes.

I did experience noticeable, ever-increasing fatigue for 2-3 years before GCA diagnosis (Nov '16), but thought it was just due to increasing age. Probably not? I cut down exercise a lot - couldn't walk or dance like before - because of painful hip. (OA?) Had to stop Pilates, and Tai Chi which I'd loved, because of agonisingly painful shoulders - first one, then the other - was told it was 'frozen shoulder'. Hip kept getting worse but the shoulders did improve after a year or two, becoming quite stiff but much less painful. But soon after that the GCA struck, and that's when the intense fatigue began - had never experienced anything like it before.

Pred removed all pain, including hip and shoulders, but intensified the fatigue. Amongst other things! So a new battle began.

And on we go . . . . .

ATB

[PMRpro Ambassador in reply to BonnyQuine]

"because of painful hip. (OA?)"

Bursitis???? And PMR is often wrongly diagnosed as "frozen shoulder"

[BonnyQuine in reply to PMRpro]

That's what I thought too.

Cheers.

[Annecath]

I had Fibromyalgia for 20 years had to pack in work due to pain and fatigue now at 74 diagnosed with PMR ,after a really bad year of pain different in that I was burning up and just getting out of bed was a challenge In itself. New doctor, blood tests , on steroids now feel like a new person gone down from 15 mg of steroids to 12.5mg but am now feeling in pain again see doc Tomoro may be need to go up a little in dosage . What I would like to know is foods that is good for PRM would be glad of any help