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.

[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