Once upon a time....

[Paula-kent]

This post outlines how my diagnosis came about and why I’m feeling a little more positive.

I’d been ‘unwell’ for a while, backwards and forwards to the GP with various symptoms that collectively were having a real impact on my life.

First, I was told it was pernicious anaemia. That was some time in 2015. I was beyond exhausted and my B12 level was 112. GP gave me cobalamin which made very little difference so agreed to give me a B12 shot every 8 weeks. Vitamin D was low too but oral supplements seemed to help a bit.

Despite still not feeling right, I didn’t have the strength to fight so accepted that I was being treated appropriately and tried to get on with life as best as I could.

As well as acute fatigue, depression and anxiety, my blood pressure was through the roof and so I was given perindopril to take daily.

In November last year I attended a birthday party for an elderly relative. She was 85 and in a care home so it wasn’t the sort of party I was used to attending. What I mean is, there was tea and cake and plenty of polite conversation - nothing strenuous or over-indulgent.

I stayed in a nearby hotel and when I woke in the morning, felt like I had slept funny or the mattress didn’t suit me. I was stiff and achy. I took a painkiller and tried to sleep it off. When I awoke for the second time, I couldn’t move. Seriously, I was in agony. My legs wouldn’t move. I had a shooting pain in my groin/hip and just couldn’t lift my leg from the bed.

Instead of Christmas shopping as planned, we decided to drive home. It took ages to walk to the car, I had to drag my leg as I couldn’t lift it off the floor. I felt every lump in the road and pothole on the journey home.

Once home, I took some stronger painkillers and tried to sleep it off again. The pain was making me feel sick and I just wanted to go to sleep. Unfortunately, the pain didn’t ease at all so the following morning I got an emergency GP appointment and she sent me to A&E with a suspected broken hip.

After a long wait and some ‘prodding’ I was given some crutches and told nothing was broken. Only a combination of co codamol and morphine made the pain bearable so I was sent home with both. Over the next few weeks/months I had various tests - blood, ECG, gastroscopy, etc to rule out different conditions. I’d done some googling myself and thought my symptoms suggested I might have PMR but because I was only 46, it seemed unlikely. Eventually after having a good reaction to a daily dose of 50mg of prednisolone a Rheumatologist confirmed I had PMR.

Until that point I had developed additional pain in my shoulders and thighs. I was still dragging my left leg - in fact (don’t laugh) it was more comfortable for me to walk backwards so I was ‘moonwalking’ everywhere! The morphine was keeping the pain under control but was making me very sleepy. Thank goodness my boss was understanding and let me work flexibly when I felt able to.

So, over the last 9/10 months I’ve reduced the steroids from 50 to 10mg. I attempted 9 and 10 on alternate days but that caused a huge flare up and so I’m back up to 20mg 😢

Life is tough. It’s as much as I can do to get through the day. As soon as I’ve finished work I’m in bed and resting for the next day. I don’t really live, I just exist. And because no one can see the illness I get the impression people think I’m lazy or unsociable as I often cancel or decline social events.

Yesterday I met some fellow sufferers at my local PMRGCUK meeting and no longer feel like I’m facing this alone. Everyone seems to get support and strength from each other and I learnt a lot in the few hours I was there. So rather than feeling that life is pointless, I’m feeling more positive about the future and will dig deep and fight this horrible condition.

The biggest thing I took away from the meeting is that’s it’s ok (if not essential) to rest and be kind to yourself. I can try and get the people around me to understand how PMR affects me and that just because I might look ok, doesn’t mean I feel it. If they don’t get it (or choose not to), that’s their problem and I’m not going to let it bother me. I’m doing my best to reduce my medication but know it will take time.

To anyone just starting their journey, stay strong and seek support from people in your area. It’s the best thing I’ve done! 😁

[Daisychain12]

Wow Paula. I have such admiration for you. The meeting obviously really did you good and I have copied and pasted your words in a message to myself for when I need uplifting. Thank you. Long may your strong stance continue and I wish you every success xxx

[Paula-kent in reply to Daisychain12]

Thank you for your encouraging words. I’m gLad you found my post helpful. I seem to have a bit of a spring in my step today (albeit a painful one!).

Hope youre coping ok. Xxxxx

[Primarose]

Excellent post, so many people with this disease feel very isolated and just to have someone in the same boat to talk to helps enormously.

[Paula-kent in reply to Primarose]

I didn’t realise how low I was. Would feel even happier if I could shift some weight. I gave up alcohol about a month ago but am still a ‘dollop’. I’m sure there’ll be some advice on here somewhere...... 😁

[Pongo13]

What a "thriller" - moonwalking! "The way you make me feel" suggests I must play some MJ later on! Taking pred feels "bad" but best advice is "don't stop till we get enough". Some days we wake thinking "they don't care about us" but it's not that "black or white" and getting support here means "you are not alone" and together "we can heal the world". Sorry, it's alendronic acid day and I have a slow start so felt like being playful....anyone not a Michael jackson fan clearly won't get it... Have a great day!

[Paula-kent in reply to Pongo13]

Love it!!! I really wish PMR would ‘leave me alone’!

You have a good day too. X

[Wraysbury in reply to Pongo13]

Excellent 🤣😅😂

[SheffieldJane]

I am sorry that you had to go through so much before being correctly diagnosed. I suppose they couldn’t see past your relatively young age. Thank you for such a generous and uplifting post. I hope your recovery is steady and strong. 💐

[Paula-kent in reply to SheffieldJane]

Thanks Jane. 😁

The only thing I found was missing from yesterday’s discussion was tips on how to juggle work with this horrible illness. As most people seem to be retired, they have a slightly different set of challenges.

I can just about manage most days but as I said in my post, I’m not really living, I’m just existing.

Hope you’re coping ok. X

[SheffieldJane in reply to Paula-kent]

A number of people have given up their jobs early because the physical and mental cost was just too high. We did have a teacher on here whose headmaster let her have a lie-down in the couch in his study whenever she could.

I don’t know what kind of work you do. I used to work in HR and would have many meetings with staff returning from sick leave or who had developed disabilities. We would look at all aspects of their job design and working pattern to try and make work fit the individual. This included, equipment, furniture, flexibility of hours, time off for medical appointments, a change of working pattern, a revision of duties the more innovative the better. The ultimate aim was to retain the person and of course to fulfil our obligations under the Equalities Act. Does anyone fulfill this function in your organisation? Would management be receptive to a detailed proposal from you? They are obliged to make reasonable adjustments for you by law.

[PMRpro Ambassador in reply to Paula-kent]

There are people who work - but they rarely attend the support group meetings, they are probably at work! If you want advice there start a new thread with the specific question. I worked for 5 years with untreated PMR - but I worked as a freelance translator so didn't have to commute or keep fixed hours although that works 2 ways, there were often 12 hour days at the computer.

How you can manage better/at all very much depends on what you do - tell us your "problem" and someone will have been there.

[DorsetLady PMRGCAuk volunteer]

Hi,

So pleased you went to meeting and came back with such a positive feeling.

Good luck with reductions. Slowly, slowly is the way!

[Paula-kent in reply to DorsetLady]

Thank you. I’d nearly go so far as to say I feel quite ‘happy’.....

[DorsetLady PMRGCAuk volunteer in reply to Paula-kent]

This might give you a bit more info. Yes most of us are retired but there are quite a few who aren’t, and I image working with our illnesses is a nightmare. You need to get your HR dept and colleagues on board - you are not alone in this.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I assume you are in the southeast? If you go to the NORTHEAST charity site you will find a lot of info - and a DVD called "You are not alone" which has doctors, physios and patients explaining PMR and the effect it has on us plus a booklet with a similar purpose.

pmr-gca-northeast.org.uk/

and look under Support Us/Our little shop

[Paula-kent in reply to PMRpro]

Thanks for the advice, I’ll take a look.