De-lurking!

[Soraya_PMR]

I’ve been reading and inwardly digesting this forum since December '16. Neck and back/scapula/rib ache from Octoberish, down left shoulder into arm, fatigue (I thought I had a touch of lazyitis). By January left hip, groins, axillas, and I asked my chiro (who had been trying to sort my back/shoulder for a while) if I had arthritis in my hip? She thought not as I had full range of movement. Went to GP who prescribed amitryptylline for the arm, and lansoprazole (made me ill) for the gastritis/indigestion, presumably caused by Brufen which hadn't helped, neither had paracetamol or voltarol gel. Anyway, right hip and right shoulder soon joined in, despite the Amitryptilline, so I stopped taking it. Then February 10th I had a 'fluey' weekend with gritty joints, and inability to sit still. Stiffness persisted and got worse and lasted longer. This is when I was reading this forum avidly, and thanks are due to those who respond with wisdom, and also to those who share their problems, allowing me to 'compare notes' and get some affirmation and reassurance.

I waited 4 weeks, knowing my GP would write it off as a virus if I attended too soon; as it was I waited 6 weeks due to appointment availability.

I told my sorry tale, and he immediately thought PMR! Sent me for bloods, but they were 'normal' (CRP =1; ESR =11) so there was "no way you can have PMR". I countered with the knowledge gleaned here, 20% are normal. And somehow managed to persuade him to give me a steroid trial, and within 3-4 hours I could ascend the stairs, and by next morning was up and out with the dog within an hour of waking. So I was allowed to stay on pred, (even though he was convinced I didn't have it) and waited til late September to see a rheum who confirmed PMR.

I'm 57, had work stress, carer stress, 2 parent deaths and other not nice stuff to contend with during the previous 2 years, so if stress is a contributor I'd count myself in. I'm currently on 12.5mg pred down from 20mg in April (with a few ups and downs)

[PMRpro Ambassador]

Wonder if he will remember the next time he has a potential PMR patient with normal bloods????

[LeafyLytham]

Hello and well done for coming out and De-lurking yourself. I did the same a few days ago, like you, I had avidly read everything for months before posting myself.

I absolutely agree that stress, in its good and bad guises, seems to be evident from the start of PMR.

Go slow, go easy and indulge the absolute sanctuary of being with other like minded individuals on this fabulous forum. x

[Soraya_PMR in reply to LeafyLytham]

Thanks Leafy.

Hubby is very supportive, but he doesn’t quite ‘get it’. I’ve given Kate Gilbert’s book to my ‘scientific’ son to see if he can understand why I’d rather use my energy to walk the dog for instance, rather than pick up his dirty laundry! LOL! Some hope!

Talking to people who understand is certainly appealing.

[Routy in reply to LeafyLytham]

So very,very true Leafy Lytham.We are so blessed to have been able to have so much help from this Forum Family!!!!..we're been blessed actually.😇😇😇

[markbenjamin57]

Greetings and Welcome Soraya, nice to hear from another De-lurker!

I can relate to your story and symptoms, especially the apparently 'normal' inflammatory markers with PMR sometimes. Clearly, the Pred test proved PMR, as is often the case. A lot of GPs don't seem to be aware of this... Mmmm...

I was 57 when I went down with PMR 2 1/2 years ago after a bout of Bacterial Pneumonia (the type you catch) - it's not so unusual for people in their relatively 'young' 50s to get this, despite what you might read in the mainstream blurb about the typical age range for PMR onset.

As for possible triggers of PMR: well, the Jury's out on that one but many of our Polymalingerer and Pred-popper friends here report either a period of stress, infections, viruses, injuries or any combination of such prior to the onset. It makes sense to me, since PMR is an auto-immune condition where the delicate AI / hormonal feedback system over-reacts to physiological and / or psychological Stressors and takes some time to get back into balance. In the meantime, the Preds (should / usually do) keep the symptoms under control, albeit that they bring some other challenges of their own in the process!

That said, I'm sure you'll get lots of responses from others here, including the 'Aunties ' / experts. They're a helpful and friendly lot, if a bit Bonkers sometimes!

Best wishes and keep us posted

'Uncle' MB

[Soraya_PMR in reply to markbenjamin57]

Thanks for the welcome ‘Unc’

Regarding your trigger suggestions..... may I claim them all? Or is that just greedy?

Yes, 57 for diagnosis seems unfair, symptoms started age 56 (maybe earlier?) My mother in law had it in her 70’s, so in my head it wasn’t for us whippersnappers. Yeah, PMR didn’t read the book did it.

[markbenjamin57 in reply to Soraya_PMR]

You're welcome

Yep, you can claim all of the prizes! My money's on excessive Emotional / Psychological Stress and / or an individual's capability to cope with it - which doesn't do anyone any good. I'm not a medic or a psychologist, but I'm certain that a prolonged period of Stress is often one of the root causes of all sorts of 'illnesses'. But Cause and Effect with PMR is a complex topic so I won't stick my neck out here!

I forgot to mention that susceptibility to AI conditions like PMR can also be 'in the genes', like other health issues. There's a popular mis-conception that PMR only affects the supposed 'Oldies' (e.g. 'age 70+') but there are more than a few of Us Lot who defy that wisdom and are very young at heart regardless of physical age!

You're right - PMR operates by its own Rules - difficult for some Newbies (and even us Veterans) to get out heads around. Either way, try to keep smiling on the Journey and you're in very good company here

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

Who are you calling bonkers😏

[markbenjamin57 in reply to DorsetLady]

Ohhh.... DL : Back behind the sofa for me then

Anyway, I thought you were off to Sunny climbs and had better things to do?

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

I am - or even sunny climes!

I’ve got another month to annoy you all yet! I’ve finished all my Xmas shopping for family this end and written all my cards (our charity’s of course!) so I might be bored for a week or two! And you know what that means😏

[markbenjamin57 in reply to DorsetLady]

Ok ok ok, 'climbs' / 'climes'. Whaadeverr... ;-/

Glad you're going to continue to keep us all in order

[Grammajoy in reply to DorsetLady]

Your photo reminds me so much of one of my favorite friends so I always smile when I see you! Speaking of photos how do I get rid of the too large photo I posted and reduce to size of the others?

[DorsetLady PMRGCAuk volunteer in reply to Grammajoy]

Nice to know there are two good looking women in your life😏😉. That’s always assuming you are referring to me and not Mark!

You need to reduce the size of the original. I always use one off PC rather than iPad as I find it easier to edit. Am on iPad at the moment, but will have a look on PC in a while, so if you have any problems come back and I’ll go through what I do.

[Hidden in reply to DorsetLady]

Sorry to interrupt. Think I used that expression about myself! But anyone can own it if they wish...

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Think it comes with the territory! Or maybe the bonkers came first followed by the PMR/GCA.......now that’s a new symptom to add to the list🤔

[markbenjamin57 in reply to DorsetLady]

Wait for THAT book, coming soon...

In it, there's a Self Assessment questionnaire to determine where you are on the MBN2B (MarkBenjamin Normal-to-Bonkers) scale. But from what I know about You Lot, many will pass the test for FMB (Full Monty Bonkers) anyway!

[markbenjamin57 in reply to Hidden]

Don't be Sorry Pepperdoggie (hey, that rhymes!)

Seriously, it's great to hear from what I'm sure are many 'Silent Lurkers' (!) here who, for whatever reasons, prefer to stay-in-the-wings and not make themselves visible in the PMRGCA HU Community.

I do wonder if this is sometimes because some of Us Lot don't want to appear stupid or un-informed when there is so much reliable and trusted advice at hand: and / or don't want to seem to be a nuisance to others?

I was one of those 'Newbies' a couple of years ago - but I've realised that getting involved and being visible here was / and still is the best thing I could ever have done on my Journey with PMR.

As many 'Newbies' say, this is absolutely the best and most helpful, expert and supportive PMR / GCA Social Health Community going. And.. we have a lot of FUN along the way!

My role here is simply as (q.) 'Resident Comedian and Chuckle Shuffler' - a title of which I'm proud.

So, to all 'Silent Lurkers', don't be afraid to get stuck-in and contribute here, whatever your thoughts, fears, experiences and questions. You are in safe and trusted company - take it from me

'Uncle' MB aka 'Four Eyes'

[Routy in reply to markbenjamin57]

Oh,I just love you lots!!!,.I woke up at 5-30am,felt so dreadfully dizzy&wondered if I was going to have a seizure!!..I also needed the loo.Well,I stayed put crossed my legs&gritted my teeth😫and waited?I've got undiagnosed PMR..I'VE on the Press for 3weeks,the second day of taking them,i felt relief.WOOOPPEE...i had a tumour removed in my head on March 1st '17...slight problem occured,I found out 4weeks ago,after being rushed to hospital.with a bleed on my brain.I'd had a siezure and woke up on the wet room floor.I couldn't move

[Routy in reply to Routy]

Sorry,everything froze.Well the outcome was,a very beautiful lady came to see me&she was a Neuro Consult in the hospital.for a meeting,Thank God!...she came in the cubicle&told me they'd nicked a nerve whilst operating on me,and I will never be the same again,but they'll make me comfortable,I'll have good&bad days,all very true.She said she was getting rid of the crapmdrugs I was on&putting me on the Rolls-Royce of drugs.She didn't operate on me,it was an ENT Consult.So they took me home&I dragged myself to my GP&'said I wanted trialing on Press as I had PMR.He said I hadn't,due to blood tests.I went armed with printouts from Health Unlocked&Arthritis UK.He had a quick look&offered them back,the look I gave him,spoke volumes,so he kept them.I bongo see him Friday&willni blast him,in a very nice way(another bl...y minded lady).So from crying at 5-30am,big poppy tears,feeling sorry for myself,I finished up laughing out loud at you lovely people,Thank you,from the bottom of my heart,God Bless you all.x

[Routy in reply to Routy]

Forgive the unusual words,Press for Press ect,it's got a mind of its own this tablet.Bye the way I worked for the NHS as a nurse,till 5yrs ago¡!!!Kindest regards,always

[Soraya_PMR in reply to Routy]

Lovely predictive text Routy! Particularly the bongo visit to your GP. I think I might try that.

Sorry for your recent trials.

I too was/am a nurse.....our humour gets us through some bleak times.

Hope Today is a good day for you.

[HeronNS in reply to Routy]

You have had a rough time. I love your spirit!

[PMRpro Ambassador in reply to markbenjamin57]

"Pred test proved PMR, as is often the case. A lot of GPs don't seem to be aware of this"

Actually, the pred test DOESN'T prove PMR - it just adds to the file in terms of evidence. Other things which cause PMR-type symptoms will also respond to pred, especially at high doses which is why giving your ?PMR patients above 30mg is not helpful.

[markbenjamin57 in reply to PMRpro]

Ah, thanks PMRpro. I stand corrected...

[Soraya_PMR]

As he didn’t argue with my 20% statement, in retrospect I think he didn’t know that bit. But when pushed he did admit he had another lady with normal results, so really he should have known! Third lady lucky???

His concern of course was that he had no idea how to titrate the pred, without blood results to go by. Hmmm.

Credit due though to his jump to PMR as a first guess. (My chiro and I had already decided this, but I didn’t say that til he made the suggestion).

[PMRpro Ambassador in reply to Soraya_PMR]

"he had no idea how to titrate the pred, without blood results to go by"

Symptoms returning? Especially since they are ALWAYS king. Duh...

[SheffieldJane]

Well done! What a brilliant patient you are! Did you keep a diary? This sounds practically text book. You describe the obscure early days when we all blame ourselves for the malaise, so well. It's a pity your doctor didn't bother to look up the absence of raised inflammatory markers. I am only sorry that you had to suffer so long. Glad you've come out of the shadows and joined us - stay with us! I am sure you will have loads to contribute!

Your difficult stressful time in the run up to the PMR ( collapse) diagnosis is, unfortunately shared by a lot of us. I am sorry for the loss of your parents. I am an orphan too.

Now your job is to get well. You will know it is all about pacing your activities, lots of rest, avoid stress as far as possible and when you are ready, taper off Pred very slowly!

[Soraya_PMR]

Thanks Jane.

No, not a diary as such, a few jottings, an odd word here and there. When I saw the rheum, I spent the evening before getting it in chronological order, and it proved useful. I keep a record of dosage and how I feel now though.

I'm sorry, I misled you, I still have my lovely Dad. It was my mother in law (had dementia and I was her full time carer) and my Dad's second wife who died. My mother died when I was 22. My father's grief was awful to behold, he became physically ill, an added stress. But bless him, he never said I looked poorly, but next time I saw him he'd say I looked better, then admitted I looked rough the last time!

The irritations of pacing! I WAS an "it needs doing so I'll do it now" sort of person.....but not of late. Do a bit, rest a bit, one day doing, next day not. I've learnt the hard way, a forced march pre-pred when I had a touch of 'mind over matter' seriously backfired and wiped me out for 3 days. I'm in the fortunate position of not having to work currently, Kudos to those who still work with PMR.

[Marilyn1959]

Hi Soraya, glad you have de- lurked!!!!!! Congrats on showing such resilience to determine correct diagnosis. I agree the insight given by members on this site helps instill in us the confidence we otherwise might not have to challenge those who seemingly have the power!!! Little do they know that, by sharing collectively on this site, we shall not individually be overthrown!!!! (Or something like that anyway!!!)

[CT-5012 in reply to Marilyn1959]

Strength in numbers!!! 🙂

[Soraya_PMR in reply to CT-5012]

Powerful Medical Rebels?

[CT-5012 in reply to Soraya_PMR]

I wish, get your Viking hat on. 🙂

[Elaine-W]

Welcome to our group,

Although you have been diagnosed with this horrible illness you are in for treats. We are an ever so slightly weird family with lots in common. We have humour, advice, shared stories and experiences and AUNTIES. We have all discovered that stress is our enemy. Our own we have to deal with. Other people’s we have to try and avoid. We need to pace and not be first to volunteer. Learn to stand back until we are well enough to rejoin the ‘I can do it’ club. It is actually quite empowering when you get used to it. We don’t always have to hold the baton, it’s enjoyable to watch the race too xx

[PMRpro Ambassador]

Eight years ago when I joined the only available forum at the time on patient.co.uk (now renamed patient.info to confuse the innocent) I lurked for a couple of months while I read every single previous thread! Then a new post came up that I knew the answer to - so I plunged in and explained.

You couldn't do that now - I alone have over 15,000 posts on that forum! No idea how many here - equally scary for both me and you I imagine...

But it is the first post that is hardest - it gets easier as you go on

[Sandy1947]

Welcome to the PMR forum family where we come to learn and incorporate new ways of dealing with this unwelcome illness. Strength, humor and broader horizons result from de-lurking!

[Soraya_PMR in reply to Sandy1947]

Thanks for the welcome Sandy.

Horizons feel a little blinkered currently. But I have a broader backside ; )