Polymyalgia rheumatica

[Shivmarie]

So I went up the hospital, I was traiaged almost immediately. All my stats were fine, they called me in again to do an ECG, all checked fine.
The doctor calls me in again and I sit and have a massive discussion about my pain, where it hurts, when it hurts, scale of pain, breathing etc. then asked history, I explained about my anxiety and that I'm doing CBT and not once did they even suspect this was anxiety and fob me off, they did a very thorough assessment limbs, lungs, chest, eyes, tapping me all over the place pressing down on areas and could see I had been in alot of pain, they left the room for about 15 minutes I could sort of hear them discussing it outside the door, anyway, they came back in and said, Siobhan what are your main concerns, what do you think it might be? So I explained, dvt, lung infection/cancer etc and he was very reassuring, he sat down and explain what he seriously suspects it is which is Polymyalgia rheumatica. It's something to do with my immune system attacking my muscles, he said my ribs and chest felt very tender and could see I was in alot of pain, even to touch, and he could also see I wasn't breathing correctly. (This air hunger thing I've had going on) He has told me I need to get my gp to run some new blood tests to check my inflammation markers, ESR and CRP and refer me to a rheumatologist to put me on a course of steroids. He was really good, he told me that if they refuse to tell them they have to as it's in the guidelines and they have to refer me. He gave me the heads up about not taking ibrofprofen and also that unfortunately there are not really any pain killers that combat this it is something for steroids. So that's my little adventure up the hospital.

[Speranza]

So glad you found sympathetic people there. It makes me even more grateful for the NHS. x

[Shivmarie]

Thanks both, I'm in immense pain right now but I knew this was something that wasn't me over thinking, or in my head. I've been back and forth to the doctors since April.
He also said due to me having endometriosis whilst I had my laparoscopy to remove it, it's a possible factor. It is quite rare for someone of my age to get it but he seemed very sure, I must of been in there for almost an hour, that was after my triage and ECG etc. I'm rest assured knowing its nothing to do with my heart, my lungs again were sounding very clear, he did say though if my breathing changes, like im trying to take deep breaths alot, then I'm going to be prone to infections which may explain the mucus/phlegm build up ive been having. He seemed very much on the ball, and he did a flow chart of what my GP needs to do, ill also have it on my medical record, I know they'll think oh it's her again, but it starting to feel I was right to go down there all these times as something had clearly been wrong since I came out of hospital at the end of April.
The fact he sat down and asked me straight out, what do i think it could be or what my worries were I felt really pleased, as he didn't know what the might have been, so it was good. He also said he can't put me on steroids because its something my GP needs to monitor, but he wished me luck and told me to stay firm. Thats fine with me as he gave me all the information armed for my GP. He was checking me over and constantly was asking me have you been to your GP for this problem, I said yes alot of times I've had nothing, just anxiety/virus replies. He wasn't impressed.

[Shivmarie]

Yeah exactly. I've been going there since after my, op and they've said it's, either viral, or its been a case of my anxiety or the best one is that I'm depressed. Numerous different GPS, explaining the same symtoms, nothing, one GP laughed at me when I said I thought I needed a chest X-ray. I kept going back and saying I'm fatigued I'm constantly in pain, but no, it wasn't even considered. I had my bloods done at the end April perhaps that might be why they didn't acknowledge it? Or acknowledge further testing, but he even checked my bloods after i said theyd been done in April and said to get get them checked again, and I need referring to rheumatology.

[Shivmarie]

I will do, I'm going to go in tomorrow even if I get a telephone consultation that will be fine. I only need to discuss the referal. I understand the rarity but the fact they didn't just for the samke print me off another blood form, yeah could of been normal but at least it rules it out. The fact was I'd just had surgery so there's a risk of infection etc you'd think they'd of taken that into account anyway but no, they see anxiety on my record and make their assumptions. So pleased I've got some ammo now though. Thanks x

[Speranza]

I wonder if it would be worth getting an appointment with your endo specialist? I only say this because one of my daughters has endo and her friend also, and the friend had endo on her diaphragm.

I'm so glad you felt 'heard' today, that's great. Hang in there. :hugs:

[Shivmarie]

That's a possibility?
im just awaiting a call from the GP now x

[Speranza]

It is technically; however since you seem to have the classic symptoms of something else it is most likely that. Just be aware, endo is a tricky one!

Good luck with the call! X

[Shivmarie]

endo is the bain of my life! i had it all lasered off in April, but then all of these problems have started since, im just relieved im not being fobbed off x

[Speranza]

I hope you are on one of the brilliant online support forums? They were pretty much a lifesaver for my daughter when she was at her worst. x

[Shivmarie]

I haven't found a good one, any recommendations? x

[Shivmarie]

Argh my doctor drives me insane, called up, he says and i quote "i dont think he is barking up the right tree atall here" then proceeded to tell me "ill get your bloods done again but im sure they will all be perfectly normal" then after me saying AGAIN how im in constant pain, weather i walk/stand sit or lie nothing is helping and just went "yeah, yeah hmm yeah" nothing for pain relief, nothing to advise on how to help it, ive been using hot water bottles and tonight im going to try deep heat muscle soak but seriously im in agony.

[almamatters]

Sorry you are feeling like this, I have been through similar and I know how frustrating it all is, GP's seem reluctant to refer to rheumatologists if bloods are normal as a lot of auto immune conditions are usually diagnosed this way. They should still refer you though as you obviously in a lot of pain, does not seem very good that they have not recommended something to help your discomfort. I get widespread pain due to a condition that I have and find that heat pads are quite helpful, but I notice that you are already using hot water bottles. Hope you get some answers. xx

[Shivmarie]

Thanks Alma. It really is terrible especially as there are so many anti immune diseases linked to my previous condition and nobody seems to take me seriously. I'm trying I cope, it's getting me down, I'm not anxious I'm last hat initial panic but a ER doc telling me he suspects this after telling him everything I'm annoyed my GP won't listen. I've picked my blood form up so ill get those done in the morning, here's hoping I can have some answers soon. Ill tr neat pads for when I'm at work, sitting down too long causes me great pain x

[Speranza]

:( :hugs:

[Joystick]

Shivmarie, just wondering how you are getting on. I was diagnosed recently with PMR and have probably read too much about it and GCA. Hope all is well with you.

[Buttonshutton]

Hi joystick. I commented on your original post Re chronic stiffness as I had exactly the same. Then you mentioned polymyalgia. I eventually had that mentioned too and I too been diagnosed. Also reading too much about it and worrying about GCA. have you been on health unlocked's PMRGCAuk forum. Brilliant advice on there. How are you now. The steroids aren't working as I would like and I'm having trouble getting my head round it all

[Buttonshutton]

Hi. Go on HealthUnlocked PMRGCAuk. Brilliant forum. I'm 50. My GP said I am too young my inflammatory markers slightly up. On the PMR forum they all say markers can be normal in up to 20 percent of people. GP's don't seem to know what they are doing with it. My full story on there is under the name buttonshutton. There is someone called PMRpro amd Dorset lady on there. They are brilliant know all about it.
Good luck x

[Joystick]

Hi Buttonshutton - just seen your post and thanks for your advice. I did find PMRGCAuk forum and it is a wealth of knowledge - very well worth signing up to. I started on 15mg Pred and am now down to 7.5mg - that's since end May. I am also suffering with bad bursitis in my left knee which is not helping so I am trying to exercise the knee and keep everything moving without being able to move much. The result is sore joints - hopefully due to the exercises. I agree, it is hard to get your head around and I wish it was something I did not have - mine was certainly a result of the covid vaccine but probably my immune system was low to enable it to develop. I speak to the GP every month when I have a reduction in steroids and I actually got an appointment to see a GP face to face as I was referred by the hospital for the bursitis. However, the GP was a locum who offered no help and told me that if the knee became swollen again I would have to go back to the hospital. In the end a friend's husband, who has just had a knee operation, emailed me a copy of his exercises so I am putting my own programme together - and I am guessing this is why I am a little stiff due to the unusual movement. I'm also doing some somatics and yoga ... you have to do something, don't you?

How are things with you? Have the steroids started to work yet or is your dose not high enough?

The good news is that I met someone recently who had PMR but got through it and into remission six years ago and she is still drug free - so there can be a light at the end of the tunnel. Let's hope so for both of us. Take care and let me know how you progress. I shall try to keep an eye on the NMP forum now.

[Buttonshutton]

Hi. Joystick. I too just seen your post. This thing doesn't seem to send notifications. The pred ended up working on 25mg but now the rheumatologist wants me off it to scan me in case its something else so tapering quicker than I'd like and panicking in the meantime over what else it could be. Glad you are responding and able to lower the dose. Good to know someone recovered from it or got long term remission anyway. You take care too. I'll keep you updated once had the scan which will probably be January

[Joystick]

Hi Buttonshutton,
No, there are no prompts when someone replies are there? Anyway, I was OK at 7.5mg but when I reduced to 6.5mg I had a flare and ended up on 10mg again. I am still on 10mg and will stay there during January and if it continues to feel settled I shall start reducing again - slowly. Once I get to 8mg I shall only reduce at .5mg/month and see if I can get it down further. It's a bit of a game balancing the dose and your reactions. I am fortunate in that my GP seems to know that the disease progresses differently with everyone and she lets me dictate dosage. We speak every month and agree my next reduction but she never pushes me to reduce too quickly. As long as I let her know what I am doing she is OK.

How is it going with you? Have you joined PMR/GCAUK - the forum for sufferers - loads of good information and advice on there. Hope you are OK - take care.

[nomorepanic]

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[Buttonshutton]

Hi funnily enough I've just posted on the health unlocked. I joined it ages ago. Thank you. It's been a massive help. I'm buttonshutton in there too. Just had an apt with the rheumy on weds this week. Expressed my concerns of being on 2.5mg for some time as she wants for the scan as she's still doubting PMR due to my age and all day stiffness etc. i still think I'm text book as some are all day sufferers. I'm currently on 5mg and in agony. She said scans aren't taking too long please go to 2.5 next week. Then when scan booked zero for four or five days before !!!! Dreading that. A little depressed as this time last year was perfectly healthy. She said again it may be due to the vaccine as they have seen an increase in inflammatory type conditions. Like you no doubt in my mind. Glad to hear you are doing reasonably ok. Apparently we have to subscribe to the thread to see replies on here. Just gonna look into that !

[Buttonshutton]

Thank uou. I have now subscribed