Hello everyone. I'm learning a lot about Polymyalgia from the extremely high quality PMRGCA uk website and from this brilliantly informative and supportive group.I haven't yet been diagnosed with PMR, my Rheuma appt is on the 11th Feb. In Austria everything gets checked out by a specialist first.
I can't see how I'm going to cope for another 3 weeks as symptoms have been getting progressively worse since they started in October.
I phoned the Rheuma clinic and said I'm desperate (she seemed to pay more attention when I said that 1000mg naproxen doesn't do anything) and I might get an appointment next week.
I'm scared right now. The pain is excruciating and messing with my usually very upbeat personality.
Apart from the unbearable pain, is it dangerous to wait so long for treatment?
I put my little epic story in my bio
Thanks for any feedback!
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Pullingmysocksup
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I really feel for you. Before I was diagnosed I could hardly move and my GP said it was nothing serious. I then decided to go to a rheumatologist , but he was on holiday for two weeks and that two week wait was horrendous. The fact I had a date to see him did help me mentally I suppose. When I saw him he prescribed pred. And the following day I was back in the land of the living again. It was fantastic.
Because pred has come in very handy over the years for such things as inflammation from disk degeneration, I always have hoarded it and claimed it was my favorite drug. Little did I know I was going to get PMR and take it daily for years.
Hallo - Gruess Dich!!! Where are you? I live in Suedtirol!
If it is PMR then it isn't really dangerous - I had PMR symptoms for 5 years before being treated with pred and it really was a blessed relief as it worked in 6 hours. My blood markers were in normal range and the GP said that meant nothing was wrong!! I worked out what it was myself in the end, I was still 51 when the first symptoms appeared and almost 57 by the time I got pred. The biggest risk I felt was the stiffness and limited movement meant going down stairs was terrifying - by the end, I could only get up steep stairs on hands and knees.
If, on the other hand, you develop ANY signs of GCA, especially visual symptoms or pain in your jaw when eating, you need to get medical advice IMMEDIATELY because that can be dangerous and your sight may be at risk. You would need high dose pred without delay to reduce the risk of that or stroke. And by without delay - I mean within a couple of hours.
I found warmth helped more than painkillers which did absolutely nothing. I managed to get to the swimming pool and do an aquafit class in a warm pool most days and after that I could manage a Pilates or yoga class. But nothing really eased the pain. The best exercise for my hip pain was skiing, believe it or not! Getting to the top was a bit excruciating but after each short blue run in the sun, I could move a bit better.
Haha, wunderbar. Grüß di! I'm all the way over on the other side, in Graz.But... 5 years? That's hard to fathom..
And yes to warmth - I'm a great fan of winter but this year I've cranked up the heating and instead of on a piste you can find me in the sauna. I move around in the sauna pool a bit. I don't go swimming anymore because can't haul myself out of the proper pool that I normally swim in and am too proud to use the disabled chair thing. As with anything, yoga helps but I'm reluctant to lower myself into the floor.
Ok so GCA is what I'm worried about. I do feel pressure on my head. Sometimes worries me and sometimes feels like general malaise. Eyes, jaw & temples are fine.
Skiing with PMR, sure 😅 but I'm giving my leg a break after breaking it last season 🙈
Thank you so much for speedy and supportive reply.
Closer than anyone else I know with PMR! Graz isn't THAT far - only 30km to the border and just over an hour to Lienz and I was thinking of going further with my VW camper but last summer's weather never fitted!! My Rheumy trained at Graz - lots of people here come to Graz - and he is part of a research group at the Uni I think. That is his academic link when he is out and about in the realm of PMR so I imagine there must be people who are good at it at the Uni hospital.
Were you warned of the GCA symptoms by the GP? If anything strange appears - come and ask here, you won't have to wait any longer than until next morning for an opinion.
Pretty sure if I turned up at the Notfall Medizin here I would be seen by a rheumy - not ideal at this time of year unless before 9am and before the ski accidents ... Leg broken skiing?
Yes, the Rheuma clinic at the Meduni is supposed to be good from what I've heard, I look forward to my appointment! Thanks for the link. I changed doctor because the first was rather dismissive. My current doctor has this general approach to Rheuma and is calling it Rheumatoid Arthritis. I say Polymyalgia and it doesn't really sink in.
Basically I've done my own research. Who would have thought that an intelligent person who knows her body might be able to do that?
I've been to Notfall twice in a month and they kept thinking it was neurological. But if I don't get an appointment next week that's exactly where I'll go again.
Yeeees, smashed my ankle up skiing.. Now full of metal. 🙄
Just realised you're not that far away really. You know Kärnten and its beautiful lakes is right in the middle.. I go there in the summer in my campervan 😄
Then we could meet up with our vans sometime!!! Roll on spring ...
Oh dear - that is a common experience I think. A lot of rheumies tend to look down on PMR as a poor relation and try to treat it in the same way they deal with inflammatory arthritis - and they are NOT the same. Are you with a prvate practice at the moment?
Because we have a few amazing groups who really think about it!! I don't know why - GCA isn't common but I have met some awfully research-orientated doctors here, and especially in the south. Not just in GCA but all sorts of the things. We have our share of average doctors but also a lot of very curious ones.
I think there are a few on here ythat have been through that experience, some for over a year. It's not likely to be dangerous in the accepted sense of the word, unless the pain and difficulty with moving causes an accident. Hopefully you will get an earlier appointment and the medication, Pred, if they agree the diagnosis. Once on that path things should start to improve very quickly. All the best and keep us up to date. If you need to shout, scream or rant there is usually someone around to listen and chat.
Hello and welcome to the forum although I’m sorry you have the need to be here. My back story is very similar to yours. It took five months of increasing debilitating pain spreading from shoulders to toes and repeated blood tests until my GP finally referred me to a rheumatologist. On PMR diagnosis my CRP was 115. PMR is not life threatening but it is life changing and is managed with steroids (prednisolone).
If I were you, and knowing what I know now, I would ring the hospital on Monday and ask if they will expedite your appointment as a matter of urgency. Tell them exactly how very difficult/almost impossible it is for you to look after yourself in all matters from preparing food (I imagine your appetite is minimal) to bathing/showering. Can you lift your arms to brush your hair? Is it becoming increasingly difficult to sit/stand and get in and out of bed unaided? I’m being frank when I say that your symptoms won’t ease between now and 11th February if you have untreated PMR. You do have to advocate for yourself and you will hear many stories of others here who have learned that this is important. If the rheumatologist will give you a week’s trial of Prednisolone (15mg daily) and your pain eases it is extremely likely that you do have PMR.
Please come back and let us know how you get on. You will receive support from trusted sources and from our ‘experts’ who will see you through this.
Thank you! Yes, when I phoned the clinic on Friday the receptionist-nurse did change her tune when I told her that 1000mg naproxen doesn't do anything.. She will phone me on Monday.
Having read your reply, I'll be very pushy if I don't get the response I need 💪I slept in my jumper last night as I couldn't get it off, and my daughter helps me out of bed in the morning.
I do hope you get the response you need and deserve. 🤞
A word of advice: write down in bullet points what you want to say before Monday and tick off the points as you go along. You’ll kick yourself afterwards if you forget something (I’ve done that and it’s infuriating!).
You have had replies - and whilst it may be very uncomfortable to have to wait for a treatment, it’s unlikely to be dangerous for PMR, unfortunately the same cannot be said for GCA. So as mentioned that should be treated as an emergency - is your Rheumy team aware of your head issues?
Naproxen did absolutely nothing for my GCA either.
Hello! Rheuma team are currently not aware of anything atm but I will certainly mention it on Monday when I try to arrange an earlier appt. Thanks for your reply!
I had just 4 days with the exact same symptoms (read your bio) as you so I don’t know how you’ve put up with it for so long! You really need to put on a show - cry, wail, plead - whatever it takes!
Just a thought which I would be exploring - since you’re in the EU is there any possibility of travelling to somewhere where you could get immediate attention?
Lots of excellent advice on here as usual,but as said on here,ANY head symptoms ,trouble chewing food and more importantly ANY eye disturbances,head straight to hospital.As Dorset lady and I have found out to our cost,misdiagnosis of our GCA cost us our eyesight in one eye.Hopefully it is PMR but PLEASE be alert to other symptoms won’t you?Good luck to you P.xx💐💐😜
GCA is what scares me.. I don't know if I'm getting headaches because I'm stressed about gca or because I'm lying around a lot or if it could be gca.. I'm pretty sure it's the first option but I'm phoning rheuma clinic tomorrow morning and will tell them about headaches just to put the pressure on. Thanks for your comment!
Of course it would scare you,the thought of sight loss is a real worry,but as you say P,stress can do SO much,believe me.Do what your gut tells you,only you know what it feels like.Very hard to be told NOTto stress,if stress is there ,it’s there.Good idea to phone Rheumy tomorrow,get some answers and at least to put your mind at rest.Just remember,ANY eye issues,don’t ignore them.Headaches could be tension ,have a nice hot bath ,relax and chill eh?Good luck for tomorrow and keep us posted eh P?Sending kind thoughts and a hug.xxx💐💐💐😜
i feel for you so much. I am so sorry you are dealing with so much pain. Please try apps like curable which could help in interim. You do need to be seen and placed on meds asap. I too was left for ages. My story was i put on predesolone ( steroids) which works for 80-90% of PMR - but it didnt work for me - so that was 7 months of agony and taking ( overtaking!) naproxen to cope. Now im on methotrexate and hydroxychloraqin - and i think its begining to work and pain is slowly reducing . After one year (!!!) i can just put my cardigan on myself with minimum fuss. Im not out of the woods - but im much better.
Im sorry to say it takes time. Which is unhelpful when in so much pain. You will get relief though. The pain management tools in the app did help a bit. I too was lucky im a naturally upbeat person - but i felt/ feel defeated quite often. This forum is an important resource. Wishing you love and luck xx
Go for it while you are waiting for meds - I gave up once on pred as worked like miracle and alcohol not good with steroid (can add to digestive problems I think)
I was left bedbound by my rheumatologist for 18 months because he said I was too young to have PMR. I was 50 when it started. Eventually he sent me for a CT scan that lit up like a Christmas tree with PMR. I have carers visit most days to help me shower and dress etc.
I was diagnosed by a rheumie team in A&E as GP just said take paracetamol and wait and see. With family coming from Spain for Christmas in 2015 I knew I needed urgent help and I was desperate. Immediate relief from 30mgs pred. The starting dose is much less these days.
Make sure to beg or even fake cry for a pred trial if you have to (like if for whatever they reason say it isn't PMR based on bloods or age). If/when it works, then you will have "proof" you need it. Whatever it takes. If nothing else, then you'll know if pred works for whatever it is you have going on. I had to do this, basically. Told him I would not/could not live or function any longer in my current state.
I will! I can't hang around any longer. I certainly won't and can't live or function in my current state which I've been putting up with for far too long due to misdiagnoses. I'm absolutely fed up.
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