Polymyalgia ; Help!

Hello Grace

"Very tired - Has anyone else felt like this?"

I'm sure that everyone reading this will be answering with a resounding "Yes". In my early days with PMR and GCA, I lost count of the mornings spent in my dressing gown, too tired to think of washing and dressing. My friend, also with PMR, called them duvet days. I used to feel better later in the day and always strived to get out for a little walk (out of my dressing gown by then, I hasten to add!). So no need to feel "disappointed" with yourself - just take each day as it comes and 'go with the flow'. It's early days into your treatment still and it's very important to have lots of rest to allow the steroids to do their job of getting control of the inflammation. indeed, you can take comfort from the fact that you have been able to reduce to 12mg and are not suffering any side effects.

Both the PMR inflammation and the steroids cause fatigue, so with a double whammy it's no wonder we feel so tired.

The fall won't have helped you but do resist reducing the steroids following the trauma to your body until you feel back to 'normal'. Rest assured though, you will feel better as your reach the lower doses. Take care and good luck!

MrsO

Hello Tired Lady, and fellow sufferers.

Don't worry about the weight gain. I put on approx 20KG withing a few month when starting with pred. Nevertheless, as soon as I got under 5mg I started loosing the weight again. I lost 10 Kilo's within a fairly short time and people start recognizing me again.

I concurred my tiredness with 'Macca' and 'Cats Claw' which gave me back a lot of energy. I also found out that a few 'Melatonin' tabs with a glass of warm milk makes you sleep like a baby. Try it out and you will never look back.

If you have painful legs (like shin-splint-pain) during night time, wrap them in something cold, it totally takes my pain away. I found something at 'kewlthang' and they were so kind to custom-make me some cooling wraps.

Best wishes to all!

Be very careful taking 'Cat's Claw alongside Prednisolone - it could possibly reduce the effects of the steroid. In fact, before taking any supplements alongside steroids, it is always best to discuss with your pharmacist regarding compatibility.

MrsO

Mrs O, I discuss everything with my pharmacist, she is very much in favour of dietery supplements. She looks at all the things I am taking and at the big picture. I am now down to 1 mg pred. For me 'cats claw is a blessing.

Anyway, thanks for the warning. I suppose we all need to investigate carefully anything we put into out mouth, no matter who prescribes or recommends it to us. Doctors are too busy these days, at least here in Australia. Sadly they have only 6 min, per patient, which does not give them enough time to read your file, just enough to write a prescription and measure your blood pressure.

Hello Grace - as MrsO has said, we can all identify with the tiredness! Fatigue is a part of any autoimmune disorder and is the primary reason w emphasise the pacing yourself aspect of living with PMR. I'm far from convinced it is the pred, I think it is the PMR and the pred doesn't combat it initially - it will improve as time goes on. I say that because I had 5 years of PMR without pred and I could have slept for Britain! I also put on a lot of weight in those 5 years because of being unable to exercise as I had done previously. When I started on pred the weight redistributed to midriff and face and shoulders and I think that tends to make you look fatter than if it all over. I put on loads more with a different form of pred - but having changed to yet another form I have lost 35lbs in 18 months whilst still on pred. It can be done but it is very hard work I admit.

Elisa - melantonin isn't available except on prescription in Europe. I don't know WHY they think it would poison us! It does help you to sleep - I've bought it when in the USA and it is brilliant for jet lag too! Yes, UK GP appointments tend to be 10 mins if you are lucky. I live in Italy - very old-fashioned here: turn up and wait and she takes as long as she feels she needs. In fact, I'm the one who goes in with a bad conscience about getting out quickly! I've no real desire to go back to the NHS as it is now!

As everyone is saying, tiredness is all part and parcel of PMR I believe. It took me a long time learn to pace myself - and still I slip up and have to pay the consequences! Regarding the NHS I can honestly say that both my husband (who is suffering from some kind of neurological disorder, still being investigated) and myself have had excellent treatment from consultants and GPs. May it long continue!

Tired lady - don't misunderstand me - my entire family (me, him and both daughters and spouses) worked/work in the NHS! My husband, I and our eldest daughter and granddaughter wouldn't be here without it (he had cancer, I had pre-eclampsia and Nat was over 8 weeks prem as a result, her daughter has severe asthma and is in A&E every few weeks). For that sort of thing the NHS is wonderful and I will defend it to my dying day. What I DON'T like is what has been done to it over the past 10-15 years. And in terms of the PMR and stuff I had appalling treatment and if I had my time over I'd have fought a complaint, the hospital side of it was so bad.

Here is like the NHS once was - but it looks as if it will go the same sort of way. As long as it takes 30 years that's OK.