Polymyalgia Tiredness
Posted , 14 users are following.
I have had polymyalgia since November 2013, and started on 15mg of prednisolone. I have gone down gradually, and am now on 5mg which I will take for 8 weeks.
I still have aching shoulders and arms, but not bad as before. My biggest problem is that I am so tired, and find it very hard to have an interest in anything.. I just wish there was a tonic to give me a huge boost, and I can feel normal again.
Sorry to be a moan!
Kind regards,
Grace
0 likes, 31 replies
janet08828 muirkelsi
Posted
That is a problem I recognise only to well unfortunately - but I have learnt to accept that when I am tired and uninterested I have a rest or a little siesta (sounds more romantic?!) and take a time out - it is an absolute pain but I am convinvced that the real me will be back once the pred. is down to a maintenance dose - hopefully this year sometime - in the meantime I am wearing out the "patience is a virtue" mantra.
The sun shining seems to give me an extra boost.
jon02168 janet08828
Posted
Does sun exposure cause problems for anyone else with PMR?
Thanks.
EileenH jon02168
Posted
Is it certain you have (just) PMR? There are other autoimmune disorders that cause similar symptoms but are something a bit more. For example, Lupus causes sun-sensitivity and sun leads to recurrence of symptoms.
jon02168 EileenH
Posted
Yes, I agree that the dose is too low. I felt best at 7-8mg. When I got to five things started going down hill. The Rheumy told me to stay on 3mg for another month and then reduce to 2 (which will be at the end of this month). I do have sleep issues and took drugs to try to help me sleep and also had to take drugs to stay awake in the day. Also, vitiligo, adrenal insuffiency, thyroid problems run in my family but my labs are always good. I have been tested for so many things. My daughter has Lupus and my second daughter tested positive on the ANA last year. I have arthritis, brain fog (terrible) as well. DRs in the US don't seem to have as good an understanding about autoimmune disease as do the Drs in the UK. My daughter lived for several years in ABerdeen, Scotland and had a great DR there that was very helpful and was able to manage the disease for her.
Thanks.
EileenH jon02168
Posted
And a family history like that - hmmm. Not just PMR I'd hypothesise...
pat73046 EileenH
Posted
pat73046
Posted
EileenH pat73046
Posted
If it is the PMR then it is because your muscles are intolerant of exercise - which means your body is having to work far harder to do anything. Think how you would have felt trying to, say, cycle like Chris Hoy in the Olympics. Now imagine doing the vacuuming at that sort of level - that's what it feels like to your body with PMR.
But with a Hb like that - that isn't helping. Hasn't your doctor offered anything? Whatever sort of iron supplement they used to give us 30 years ago when pregnant really upset my stomach - when I told them at the clinic they admitted they usually used the cheapest and gave me a different sort and I was fine. Ask the pharmacist. Are you also on AdCal or calceos or something - the calcium and vit D supplement? If so, be careful what supplement you use. They aren't just vitamins, some have calcium and you mustn't take more calcium that the AdCal - more vit D doesn't hurt though.
pat73046 EileenH
Posted
EileenH pat73046
Posted
MrsO-UK_Surrey muirkelsi
Posted
It is a little unusual to be feeling "so tired" on doses as low as 5mg. It could simply mean that you are on too low a dose for you at present, especially as you say you are also experiencing aching shoulders and arms. It might be wise for you to increase the dose slightly, say to 7mg or 7.5mg for a few days - if you feel less tired and the aching improves, then you will have your answer, and you will need to remain at that dose for a good few weeks, then perhaps try reducing just in half mg steps and see if that is more successful. However, if you are taking only enteric-coated Pred, then they shouldn't be cut. Only the white uncoated tablets can be cut in half.
muirkelsi MrsO-UK_Surrey
Posted
I will start tomorrow at 7mg, and let you know how I get on.
Regards,
Grace
pat73046 muirkelsi
Posted
muirkelsi pat73046
Posted
Grace
constance.de muirkelsi
Posted
Envy you going to M&S. That's the one shop I miss in England, especially the 'only food' stores.