blood tests

[Debs63]

hi I’m just waiting for my official diagnosis of PMR. I have had awful joint pain in arms hips and neck that has gradually got worse since a full hysterectomy 8 weeks ago. My blood tests.came back abnormal ESR 44 CRP 16 also liver function abnormal low vit d and iron and j feel exhausted all the time does steroids work as quickly as I’ve read ? I need to be feeling better to go back to my full time job in a call centre which is 11 hour shifts don’t know how I will cope sitting so long as it’s agony when I try and stand up any suggestions would be most welcome thank you 😊

[DorsetLady PMRGCAuk volunteer]

Hi sorry to hear you could have PMR, does sound suspiciously like it…….some people do get immediate results from Pred (steroids) but for others it can take longer…and unfortunately it’s not a disease that can be rushed.

Maybe have a look at this link to see what lies ahead, if it is PMR,

healthunlocked.com/pmrgcauk...

We do have members who are still working, but you doneed to get your line manager, occupational health, HR and union rep on board… these links to CAB may help -

citizensadvice.org.uk/work/...

citizensadvice.org.uk/benef...

[Debs63 in reply to DorsetLady]

thank you I will check these out 😊

[piglette]

When I first took steroids I could hardly move, then in fifteen hours, twenty six minutes a miracle happened and I was back in the land of the living. Some people take longer and some even less time. If you accept that PMR can be life changing and treat it with respect you should be fine. Don’t overdo things and take lots of rest.

[Debs63 in reply to piglette]

oh that’s good news I hope if I get steroids they work quickly for me as my mum can move about easier than me and she is 80 , thank you for your reply 😊

[piglette in reply to Debs63]

Hope you get the magic effect quickly.

[krillemy in reply to piglette]

Same for me

[Jigsawlass]

When I was prescribed steroids I went from not being able to get out of the car unaided to being able to move without pain , all in a matter of days . But the steroids sort the pain, not the exhaustion. Probably not what you were hoping to hear but I'm afraid steroids aren't the cure all and you may need to rethink your working hours . I am still working , 13 hours a week, but need a lot of rest to allow me to work

[winfong]

One of the ways you can tell if you have PMR is if it responds to the pred. As for the exhaustion, higher doses, especially at the beginning, can have a definite stimulant effect.

That said, it's a long row ahead. I've kept working for the 2.5 years since I got it, and it's hard. Luckily, my manager and HR dept are pretty understanding.

Right now, I'm also trying to do it while getting through a bout of Covid. Not sure how much longer I can keep it up.

[PMRpro Ambassador in reply to winfong]

"One of the ways you can tell if you have PMR is if it responds to the pred."

To a certain extent - but do do a lot of other things.

[HeronNS]

You had major surgery and that could have been the final stress to trigger PMR. But is your doctor certain you don't have some sort of low grade infection which is beginning to stir? Please make sure this is not the case before you start an immune suppressant. Best wishes. Hope you feel better soon.

[Debs63 in reply to HeronNS]

thank you for your reply, something to discuss with my doctor for sure it was a big op and still recovering for that I had a 4kg ovarian cyst the size of full term pregnancy removed with full hysterectomy and hernia repair after waiting 5 months , then once home from hospital started with immense pain in arms and hips and neck that’s been getting worse , hopefully will have some answers tomorrow at my appointment.

[Flivoless]

I have managed to keep working throughout my PMR journey but it's quite sedentary. Although my second full-time job is picking up the fallen leaves from the whole of West Sussex which seem end up in my garden. That takes much more careful planning mind as it very easy to overdo things, especially when on higher doses of Pred.

[Debs63]

thank you for replying it’s good to know that I should be able to manage to keep working g but may need to reduce my hours slightly as not sure 11 hour shifts are going to work even though I’m sat at a desk taking calls, good luck with the leaves and take it carefully 😊

[DorsetLady PMRGCAuk volunteer in reply to Debs63]

You certainly need to adjust them -providing you can -I think 11hours would just about finish off anyone with PMR !

[PMRpro Ambassador in reply to Debs63]

No - I think you are hearing what you WANT to hear: there is no SHOULD about it, you MAY be able to keep working with adaptations. Everyone is different. I worked the occasional 11 hour day with untreated PMR, I was a self-employed/freelance translator and had deadlines to meet, usually catching up for the mess the client had made in their timetable! But I could choose my hours, if I had a tough few days where all I did was work and sleep, I then had a few days off completely. I couldn't have worked regular inflexible hours. Or commute!

[Doraflora]

hi Debs63. I was pretty fortunate in that After taking my first steroid tablet (March 2020) I noticed a difference just a few hours later. But don’t forget, we are all so, so different and there’s definitely no blue print.

PMR is so debilitating at times - and it must be tough for you doing long shifts. Hope you get the support you need from everyone,

If you’re not happy with something then do keep on at your GP. It’s your body, and your life, and some doctors are not as clued up on PMR as some.

Just post on here whenever you want. I don’t know what I would have done without the wonderful people on here.

[Debs63 in reply to Doraflora]

thank you and yes it’s really good reading through the posts on here and I realise everyone is different.

I’m going to manage this as best I can I’ve lived with the pain and found that keeping active and mobile helps so much . As for work I’m having an OHS assessment in a couple of weeks as returning back to the office beginning of January and will work with my manager to find what ms best for me.

[DorsetLady PMRGCAuk volunteer in reply to Debs63]

What’s best for AND your illness - you may find it a lot more tiring than you think - so please don’t overstretch yourself. It will do you no favours in the long run.

But you won’t know until you try -so good luck.

[Knit11]

I was incapacitated by the pain from PMR and Pred (steroids) put me back on my feet. I work full time in the office. Very tired when I come home, because the medication makes me wake up numerous times through the night and I often end my sleep way before my alarm.

[Wizards]

By the time I got steroids my husband was picking me off the floor in the morning and my night pain was so excruciating I couldn't scream. The steroids worked within the hour.

As for work I went on long term sick leave then retired. There was no way I could return to work. I needed rests during the day and felt very weak.

As we all say, everyone's journey is a little different but with commonalities.

Good luck