PMRGCAuk
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Feeling low

Hi everyone

Well I've had to change from my lovely GP having moved house & visited my new dr this week for more steroids, now I seem to be with a completely disinterested dr who has told me to drop to 10mg from 15 of pred & that I should be off them completely in a few months! I wasn't feeling at my best or most patient as he didn't even make eye contact with me! So I just said no........my last GP said to stay at 15 for another month then to drop to 13.5 for another month, after that to drop by 1mg a month as long as I was coping with that. He won't do anything for the awful pain I'm having in my Sacro iliac joint as nothing showed on X-rays. The constant extreme fatigue & sweating is wearing me out & I've had to cover at work this week & have done 38 hours on nights. My husband is fed up of me moaning & still leaves me to do everything at home & I just feel at the end of my tether.

Sorry about the moaning but it seems that everyone here thinks I'm doing just fine & I know you all understand that I really don't feel that I am 😢

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Hello PamOaks. just sitting here feeling a bit sorry for myself, Pmr+thyroid + reflux, But you have stopped me winjing to myself. My heart goes out to young lady. I should think the cavalry will be up to give good advice.I will say that over the last 12mhts on this journey i have learnt to fight my corner.I hope things get better for you.All the Best.Dave.

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Aw thanks Dave, your posts & cheery manner always lift my spirits. Thank you

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PamOaks. just wonder if you have the video&book that is available on one of the forums i had it and passed it on to family& friends.try to have your say with Drs they may not always like it but A/O. Good Luck.Dave

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I bought the book by Kate Gilbert, left it on the coffe table in the lounge after I'd read it........not one of them has even shown an interest in the front cover let alone the contents!...... apart from using it as a coaster of course! I give up! As long as the house is clean, dinner is on the table, the laundry is done & I'm going out to work to bring home some pennies the seemingly there's nothing to concern themselves about, grrrrr

Thanks Dave

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I have found no one is interested in the book besides myself either. I suppose it is not their illness and people are not interested what is wrong with others just themselves. PMR seems particularly difficult for people to empathise with, as we look well and people cannot understand the pain and fatigue. I suppose people with other things have the same problem too. I have started asking people to help me do things rather than pushing myself, someone from M&S even took my shopping to the car, I was amazed. I try and pamper myself nowadays too, which makes me feel better.

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The DVD Dave mentioned is from the northeast PMRGCAUK support group - pmr-gca-northeast.org.uk

That's something you could have up on the TV screen when they're around?

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Pam I really feel for you. Is there no other GPs at the practice you could see instead?. Otherwise maybe ask for a referral to a Rheumy to manage your PMR. I'm sure others on here may be able to suggest better GP or Rheumy in your area.

I think many of us find strangers on the forum more understanding than our family. My hubby read up on PMR & GCA, he will offer to carry bags, do housework etc to help out. But when I have a low moment and end up in tears, he stands by looking lost. All I want is a cuddle, but he can't seem to see that. I'm not expecting him to solve all my issues, just be a shoulder to lean on. Men never see what's staring them in the face. Yet some days he will say I admire how you keep going through all this. Even us strong positive girls sometimes have low days. 😚x

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I've got one like that runrig! Lying there with a badly broken leg and he just sort of stood there. His cousin told him to give me a hug ;-)

Then when I was dx'd with atrial fibrillation and was in hospital for 3 weeks - he came EVERY SINGLE VISITING TIME. Yes, how lovely you might think, except he sat there and said not a word! I'd have had more entertainment at a funeral. My room-mates were quite fun and had no visitors so we'd have been having a laugh.

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Your hubby must mey hubby's twin. LOL. My daughter phoned him last week told him I was low and needed a hug. I got one that night but didn't last. The science drives

Me nuts sometimes. Whenu daughter was younger and had knee surgery, he refused to sit, just paced up and down her bedside saying nothing. Looked like a psych 😁. But he shows his love in other ways 😃. Has never come to any appointments, doesn't see the need, then tells you off when you for let to ask about the PET scan. Which Rheumy has agreed to organise, can't cone quick enough, reducing Pred for scan and right arm pain has worsened and pulse diminishing 😙. Off to feed hubby now LOL XX

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I am right there with you sister! Lol x

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Ah yes, the pacing! He doesn't do it too much, his cousin's husband does though! I assume you meant silence not science, I can't remember what you said he does? I just leave mine to his own devices in silence in front of the computer and his science, keeps him out of my hair ;-) I dread him retiring totally and giving up the freelancing he's doing at present. He comes and tells me all about the reactions they are measuring - this is all molecular level biochem. I'm a whole body physiologist ...

I smile sweetly and fume as I can't hear the single TV article for the week that I was watching, miss someone winning the skiing or a try at the rugby. He runs the financial side - I'm stuffed if he kicks the bucket suddenly!

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LOL. They really could be twins. My hubby is a scientist works in drug discovery, specialises in looking at the metabolites. I have the same problem with TV. He rarely wants much conversation except when it's my TV time,. Men we love them really. Mine also spends most of his free time on his computer in the study. Enjoy the peace for now 😁

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Definitely twins! Did I say - mine's a clinical scientist by trade. At least now I'm not married to the NHS - he decided the admin got in the way of his development work and he wasn't having that. So he took early retirement and we came here to Italy. He managed to find a little friend to play with a couple of days a week in Innsbruck. It's all good :-)

Mine claims he's working - funny how often I walk in and there are cards on the screen and a disaster movie on the TV...

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Oh I'm with you there, except my husband is a computer printer engineer. After 30 years I know an awful lot about big laser printers!( the ones that print your utility bills and junk mail).

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Isn't it amazing what you can learn by osmosis...

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Hahaha.......I think our husbands are related.....night after night of sitting in silence........why oh why, it beggars belief doesn't it?!

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As I said to runrig above - mine sits in silence in front of his computer doing his difficult maths (totally beyond me). But we'll get a trip to China out of it later in the year. Not all bad :-)

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Thank you

I have always been the driving force behind him, through losing his businesses, his parents cancer (he's an only child) the death of our niece, through to our home being repossessed & eventual bankruptcy.....our eldest taking an overdose & his subsequent depression, it has always been me to chivvy him through with the old pma talks & sense of humour & "we've all still got each other" talks. I think I've just burned out & I don't think he's coping with that. Wow I shall be depressing you all at this rate.......I'm fine & I went a little overboard with the moaning....I do apologise...tomorrow is another day. Bless you

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Wow, that's more than the rest of us have in a life time. I'm not surprised your ALL burnt out. Give yourself some TLC. Xx

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I will try.......& thank you.....all of you xx

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There is a wonderful word in the English language: NO. Use it a few times. And this is high time to go off sick - though I imagine this GP isn't going to be too forthcoming on a sick line is he? If all elese fails - go to A&E. I don't make THAT particular suggestion lightly believe me.

And find another GP. You could try him again is you are feeling brave. Take these references with you:

rcpe.ac.uk/sites/default/fi...

and

pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.

In particular here you want this paper "A clinical review of Polymyalgia Rheumatica co-authored by Dr Sarah L Mackie (clinical lecturer) and Professor Christian D Mallen" which has a link.

The pain in your sacroiliac joint is almost certainly muscular in origin so won't shown on any form of imaging and may be myofascial pain syndrome. If your GP won't use cortisone injections (which he isn't going to is he?) see if you can find a Bowen therapist - no doctor required although it does cost (worth every penny). That should help it considerably.

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Thank you for that & I am googling bowen therapists as we speak. Can't afford sick leave as I'm on the bank nursing so not entitled to ssp or annual leave paid sadly. I ended up saying "can you refer me to a rheumy please as I'm getting nowhere with you am I" oopsie........but I was having a bad day & work is gruelling at the moment. Think my personal volcano finally erupted this week! Sorry all

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Pam, I have taken good advice that some of the girls have Posted on house work etc, i try not to do it,i keep myself & clothing etc clean, at my age i dont have to worry about street cred.not for me to say,but wot what about ME some times.Time for jim-jams& a bowl of Oats.Take Care. Dave

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I am going to take your advice......& with NO guilt attached.......thank you once again

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Hi pam. Sorry to hear that you are feeling so down and worn out. Try and rest a bit more, take some time out for your self. If you haven't bought Kate Gilberts book then get it and leave it under hubby's nose. Perhaps he'll get a better understanding of what you're going through. Regarding housework, do a bit when you feel up to it, a bit bit At a time. If anyone moans about it, then tell them to feel free and do it themselves. Your health and well being is more important than a bit of dust, besides, dust don't doesn't any thicker after 5 years lol , according to some famous person whose name eludes me lol. Anyway, it's time to take time out and look after number 1 and if others don't like it, then tuff! Take care. Huge hug. X

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Hi Pam, I just want you to know I am thinking of you, and sending big hugs from Yorkshire. Take care J.

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Thanks for the replies guys.....the support on here is amazing! Xx

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