feeling really vulnerable and so fed up

[Bramble2000]

Hi,

The saga continues….. GP diagnosed PMR, prescribed Pred, miraculous recovery. Saw my rheumatologist 3 weeks later (I’m under him for Ankylosing Spondylitis- ruled out as the cause for this), he stopped the Pred and told me I don’t have PMR as I’m too young at 52. He ordered a pet/Ct scan which I had 4 weeks ago.

I’m in complete limbo. I’m convinced this is PMR, CRP 32 ESR 72. I’ve been housebound with this for the last 7 months and now I’m pretty much bedbound. I can see my muscles wasting away before my eyes. I’m so weak as well as in major pain and stiffness.

I don’t have another appointment with the rheumatologist until the end of January. I’m just so sick and tired of fighting and I just don’t know what to do anymore. I live with my son who has severe ME so he can’t help. I’ve had to get my ex husband to come and stay to help me get out of bed etc. also, I haven’t had any hot water or heating for the last week and it’s minus 4 here!

Thanks for reading my rant. 😑

[DorsetLady PMRGCAuk volunteer]

So sorry to hear this - your Rheumy sounds very unsympathetic and mis-educated on PMR - it is acknowledged that it is rarer in younger people but certainly not unheard.

And how long had you been on Pred when he stopped it -hopefully not long enough to cause adrenal issues.

Think you need to speak to your GP again.

With your son’s illness you should be on the priority list with your energy suppliers -have you contacted them for assistance? Or social services?

[Bramble2000 in reply to DorsetLady]

I’d only been on the Pred for 3 weeks. They are allegedly coming out to look at the heating and hot water situation today - again….

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

ok- 3 weeks is just about borderline - but still not good.

Fingers crossed re heating/hot water today. 🤞

[Seacat30]

Has your boiler broken down? If so, have you told whoever services it that you are disabled with a vulnerable son? They should come out as a priority.

[Bramble2000 in reply to Seacat30]

I phoned at 7am. Waiting for a call. X

[suzy1959]

I’m so sorry you are having such an awful time. I was 52 when I got PMR and was told I was too young! A PET scan did give me the diagnosis, so I’m hoping yours will too. Do you know when the results will be in?

It sounds like you need some pain medication now until there is more of a diagnosis and therefore treatment plan. Can your GP help at all?

You are not alone- please do use this forum to get as much support as you can.

[Bramble2000 in reply to suzy1959]

I don’t know about the results. Not due to see Rheumy until the end of January. I take morphine, it doesn’tf touch it. X

[PMRpro Ambassador in reply to Bramble2000]

Even more to suggest it could be PMR. PS - if you call 999, don't forget your mental health status resulting from the physical situation.

[123-go]

Your PET scan results should be available by now. If you can summon the mental and physical energy please ring the clinic and ask about those results as a matter of urgency: you shouldn’t be suffering like this. Needing help to get out of bed is no small thing.

If the department is unsympathetic I suggest you ring PALS at your hospital (you will find contact details on line) and ask them to make inquiries on your behalf. Make notes of what you want to say before the call. Another thing to try is to ring your GP and ask him/her - as your primary care provider- to intervene on your behalf.

I have the utmost sympathy for the position you are in. You know your own body better than anyone else. I know from personal experience that self-advocation is hard but often it’s the only way to a better outcome.

Please stay in touch.

[Bramble2000 in reply to 123-go]

thank you x

[MiloCollie]

sending you a hug ❤️

[PMRpro Ambassador]

It doesn't really MATTER whether it is PMR or something else - whatever it is was pred responsive and the result made you mobile. Without it, you are not. End of ...

Since you now have 2 vulnerable adults in the household, it is up to your GP to step up to the mark. If you could get a 999 response the paramedics can submit a vulnerable adult report and get the GP and social services involved so that would be worth a try - don't gloss over the problems you are experiencing as a carer for an ME sufferer. The rheumy is wrong, your relationship with them has completely broken down and you need to be transferred to another with up-to-date opinions who treats the patient and not his image of what PMR is (he's wrong anyway).

I would start with 999 and a clear explanation of your situation. They are usually pretty good at knowing where to seek help and will also kick a GP into action by arranging a home visit.

[piglette]

It sounds as if you will have to be proactive as your GP and rheumie will do nothing until you shout loud, which is really difficult when you are so incapacitated. As the others say find out the results of the PET scan, you can’t be left as you are over Christmas.

[Blossom20]

I'm so sorry to hear your sorry story. I am so angry with the rheumie and your Gp on your behalf! How could they leave you in such pain and bedridden - and surely social services should be involved as you can't look after your son. I would either do what Pro says and call 999, or insist your gp visits you. Surely they should treat you with Pred as that helped before and it must be Pmr with such high inflammatory markers and responding so well to Pred.

Best of luck! Keep talking to us!