I had a long period of time when the PMR was mostly fatigue, fogginess and a little dizziness

Bones, joints and muscles
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I’m new

i think I’ve had  PMR since June 2016 and was diagnosed June 2017

Thinking back my original symptoms were mainly fatigue, feeling foggy   with a vail  , with a little nausea. I remember waking up in the am with my knees aching but I thought it was because of my vigorous exercise . It didn’t stop me because it went away .

i didn’t even mention the knees to the doctor.  Advil was working 

The head  symptoms got me to the Doctor in July 2016 where a CT,  brain MRI , Lyme tests , sed rate , crp were normal among other things . They said I was normal but maybe it was all in my head!

I had lost weight

it wasn’t until March 2017 that while skiing my rt shoulder started to hurt.

Went orthopedist where my MRI of shoulder showed wear and tear .She sent me to PT .  

During PT April  2016   , My other shoulder started to ache , my whole body ached  . Advil didn’t work 

May 25 2017 i was hit very hard by the PMR. It was like a brick . The fatigue and fogginess was stifling , the back of my knees felt achy,,shoulders ached 

This time sed rate , crp. were elevated  , Lyme was neg . My primary put me on Doxycyline for a month , I stayed on it for 6 weeks . He said he didn’t know what was wrong.

I went to a neurologist who diagnosed PMR but though I improved on Pred 15 mg  50 % by day 2 he abandoned the diagnosis  because my improvement wasn’t dramatic enough . I pressed for 20mg for two more day’s but didn’t improve enough .

i had MRI s of my brain  and entire spinal cord over a months time , all we’re normal including EMG and Nerve stim studies.

By now I couldn’t get out of bed in the am , shoulders were extremely painful in am especially , hips as well

i went to the Rheumatologist when my right wrist swelled -diagnosed PMR. She placed me on Pred 20mg and I’m down  to 6 mg now.

My fatigue , fogginess continues . Presently I have shoulder  ,hip ,hand and a little knee pain 

My joint’s hurt a little more as I reduce the Pred but I’m still able to bike up to 20miles w/o much pain,I  The whole time my brain is fatigued and when done I don’t do much.

The rheumatologist is concerned that I may have something else  because a people don’t bike 20 mile with PMR?

Has anyone else had such a slow onset starting with mainly fatigue and fogginess until PMR really hit. It seeemd to take a year?

 

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It took while for me to be diagnosed too but not as long as you. I started on 15mg of prednisone and it was a miracle. I felt great. I was a biker before I had my knee replaced and did maybe 50 mikes a week average in good weather. I am at 12.5 mg now and I know I could bike if my knee w oukd bend enough. I am not surprised you cn ride and I am happy for you.

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I did, on my second go around, I has joint issues for 6 months, increasing. Then a Trauma, physical or mental have been my triggers. 2 bouts, one @52, one @63. I think the PMR inclination resides, in remission, in me, waiting to spiral up in the face of a threat....almost like my autoimmune army is waiting to OVER retaliate

Good luck,

Dan. 

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I am sorry to hear that you had so much trouble initially. My PMR onset was sudden, just like you said "May 25 2017 i was hit very hard by the PMR".  I was fortunate to be diagnosed in less then 4 weeks ( and after 3rd doctor ; I gave each doctor one week, and if they did not come up with explanation or diagnosis , I looked for alternate doctor).  I was put on 15mg and it took almost a week before I felt completely well.  That was 2+ years ago... Now I am at 3.5mg and recovering slowly.

In spite what your doctor tells you about biking with PMR, I can tell you he is wrong. Not only that you should be able to bike, but moderate endurance exercise helps with stiffness and prevents loss of muscles. I do mountain biking at least 2x a week and each session is about 80-90 min long ( distance is 10 miles, but effort is comparable to 20-25 miles road biking).

As far as having some pain/stiffness when you reduce pred dose, that is almost given.  Pay attention to it though. If it is gradually going away, then it is related to steroids withdrawal , but if it is not going away and even becoming worse, then you have gone too far in reduction and should consider going back to previous dose that controlled your symptoms well.

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Hi Vic1028, My PMR went undiagnosed for over 2 years.  It wasn't until I started showing symptoms of GCA that both were identified.  I had seen GP numerous times complaining of aches, pains, flu like symptoms, dizziness, extreme fatigue, sinus issues, headaches, stiffness in joints, loss of motion in neck and shoulders, hip, leg, shoulder and neck pain, and just a general feeling of un-wellness and yes, fogginess!  He attributed the symptoms to my having a "virus," or because I was a "woman of a certain age."  He never connected or looked at the symptoms holistically.  Unfortunately, I am now being treated for both GCA & PMR and struggling...  I wish you luck on you

journey.   Melissa

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It's a great pity that some medics are so quick to pontificate. If she read this forum she'd find that many people, when correctly diagnosed, revert almost overnight to their former energetic selves.

I don't bike but I do do very heavy gardening and was able to stand on a fairly steep bank with a petrol strimmer round my shoulders and cut the grass within a couple of days.

Next comes the taper and that can be more problematic but, again, those of us with enlightened doctors are not given one size fits all reduction schedules.

I had hurt for some months before diagnosis and the clincher was weight loss. My GP had thought it was bog standard OA. Couldn't blame him as I do have knobbly finger joints. I don't remember fogginess; I'd have almost welcomed it as the pain had had me in tears more than once.

Keep coming back. There is always support here and also good advice.

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As I said on the other thread - yes they can ski and bike and "stuff"! Everyone is different!

And it took 5 years for me to get a diagnosis after PMR crawling in the door over a period of up to a year before eventually having a major flare after about 5 years. And every few years I get another very similar flare.

I knew Nick would respond! Thanks!!

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Yes yes and yes, although in hindsight I’m not really sure just when it began. I have always been healthy, active and fitt but in  2014 I had extreme tiredness, anxiety, brain fog, couldn’t get out of bed and just wanted to sleep through life. Blood tests showed borderline thyroid issues. December 2015 massive sinus infections ( never had them in 62 years), sinus surgery Feb 2016, followed by staff infections and blood clot, thank you hospital. August 2016 the back bulging discs I had previously managed to control with exercises returned to haunt me, only this time the exercises made the pain worse. Feb 2017 extreme tiredness again, massive weight loss, loss of appetite, diarrhoea, treated as anxiety and put on antidepressants.  Then BOOM! May 2017 bilateral joint pain hips and shoulders, headaches, sore scalp, vision loss, neck pain, jaw pain, can’t roll over in bed, can’t dress myself, can’t toilet or shower myself....in fact can’t move. Tests confirm PMR/GCA and 50mg pred sorted that out. 9 months later down to 8mg, while also introducing this month a cocktail of Prolia for servere osteoporosis. PS; weaned off the antidepressants as soon as I started then pred. 

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Thanks all. It sure seems that everyone’s experience is different . It re assures me that all my symptoms are likely PMR!

One has a tendency to let doubt seep it , especially when the doctor starts to have questions .

Nick , I also Mtn Bike and yes 8-10 miles definitely equates to road biking 20 or more !

thanks again

 

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Hi all,

I did find an article on ncbi.nim.gov addressing fatigue as a precursor stage up to  of PMR in patients up to 12 months prior to the normal symptoms of PMR.

If the definition of fatigue can include feeling “whacked out , a little dizzy  then I guess it applies to me !

The only problem was that the sed rate and C-reactive protein were normal during that period.

I've read that PMR doesn’t always have an elevation of these values so that could explain why early on they were normal?

Does anyone know of a Clinical article reviewing the percentage of time PMR is diagnosed when they are normal?

My Rheumatologist is brushing off my theory that I had a form of PMR for almost a year before it hit hard . She has said it must have been something else .

Well I guess i want to prove her wrong ! I don’t want that “something else”!

 

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Think I might be looking for another rheumy - she sounds a bit blinkered!!!

https://www.ncbi.nlm.nih.gov/pubmed/10948758

https://www.ncbi.nlm.nih.gov/pubmed/9040299

https://www.ncbi.nlm.nih.gov/pubmed/9040299

Do these help?

My ESR has never gone out of normal range - it bumbled along at about 18 for 3 or 4 weeks while I was in hospital, almost unable to move, but no-one commented at the time as it was still "in normal range". It was my new rheumatologist (world renowned in the GCA/PMR field) who showed it me at my first appointment with him. Usually it is at about 4. I have had a single raised CRP value in 14 years - taken on a day when it turned out I was having significant atrial fibrillation episodes! The following week it was back to normal.

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Inititally I was just lacking in oomph - for a want of a better way of describing it. The very first sign was being unable to sleep with my arms above my head - my favoured position. That was perhaps this time of year, maybe earlier. Then step classes at the gym slowly became harder work - I had lost the spring to get up onto the step. Stepping from the road up onto the pavement seemed harder too. Other gym classes became harder work - and one after another I did less and less on machines and dropped some classes. Then I went to use the crosstrainer to prepare for the winter ski season and after a minute my thighs were so painful I had to stop. That winter season the first ski holiday over Christmas wasn't as good as usual but I just thought I'd a virus and the next one was a bit better - but I couldn't ski as much as usual. I put it down to advancing age...

So nearly a year from first signs to anything more concrete - but it was another 4 years before it got so bad it couldn't be ignored. In those 5 years it was always there, but changing gym so I had access to a pool and daily aquafit classes, Pilates and yoga (both heavily adapted) helped me stay relatively mobile though never pain-free. And lifestyle changes - or limitations, however you want to look at it.

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Thank you so much!

I think I’ll get another Drs opinion .

I’m so thankful for everyone taking the time to respond .