I am 62 female newly diagnosed with pmr,

Unfortunately, yes, the frustrations of knowing that there is no cure and the only medication that stems the pains causes so many side effects.  Fatigue, lack of stamina, lack of taste and smell, possible diabetes, blurriness are all possible side effects.  I thought I was going crazy because I cant stand and work as a tennis official any more.  The only thing that keeps me going is that it may just go away someday and the support of those on this web-site, more knowledge here than in the doctors offices.

Good luck and don't hesitate to ask questions on this site.

Tony

Julia, have they not got the pain under contril for you? Unless you work at something involving fine motor stuff, what would stop you, once you feel better?

I find the exhaustion of PMR means that rest is essential, but work in between is possible!

Feel better, life goes on!

Hi Julia,  I fully uderstand and sympathise with the way you are feeling right now.  I am fairly new to this too, having been daignosed in March and I'm still finding it hard to come to terms with the extreme feeling of fatigue and weakness which seems to overtake me from time to time. I find I am unable to do nearly as much as I used to do without having to rest in between, which as you say, is very frustrating. I have just come back from a day in London - went to an afternoon concert at the Festival Hall - and even before I arrived in London on the train I felt exhausted, not helped by having to stand for the entire journey!  Before PMRI would have taken a day out like this in my stride and thought nothing of it, now I'm not even sure whether I could face it again and that makes [u]me[/u] miserable!  Like you, I've always been the one in my family to help everyone else and it's hard to say no, especially when it comes to my grandchildren, whom I love dearly but although I found it tiring looking after them before, I now find it exhausting whichI really upsets me.  On a more positive note, I [u]am[/u] gradually learning to pace myself a bit more and no longer feel guilty if I sit down for an hour or so to read or even have a doze in the afternoon!

As you say, it's supposed to be a nice day tomorrow and I was looking forward to planting up my tubs and hanging baskets but maybe, after the day out today it will be too much, will have to wait and see how I feel.

Good luck and keep smiling!

Welcome Julia!

 

I've been involved with this forum for six months. I developed GCA seven years ago and PMR two years later. Somedays I'm thankful I don't have a fatal disease like my only sibling devloped when he was 36 - malignant brain tumor. Then after I think I'm dealing with this complete change in my lifestyle, I get depressed and hate myself. I've put on 60 lbs. I look like a different person. I can hardly walk and breathe. Exercise for this formerly active athletic person is very difficult. One of my favorite activities was gardening, especially hardscaping -building rock walls, ponds and waterfalls. My 29 year old business working mainly with children had to be closed.

But today was a good one.My husband took me to a few garage sales and this afternoon I was able to wash my kitchen floor. I did it in four sections and it's not even that big. My husband has done it for me many times but I seriously need the exercise and he does so much for me  - shopping, cooking, etc. Our kitchen floor gets so dirty from our golden retriever's shedding and drool. At least the carpet on our other floors is taken care of by our robot vacuum cleaner (a roomba) our son gave us. What a great present that was!

What I'm trying to say is you will have good days and bad days, highs and lows. This forum is so helpful. Such supportive caring people. Good luck.   Jan

I'm sitting here wrapped in a towel at 10.30 (only so late because it is Sunday and hairwash day) because when I shower I don't waste energy drying myself - I find another task sitting down until I and my hair have dried! 

It is a case of learning not how to fight your battles but which battles to fight - and then learning how NOT to fight. There are things that aren't necessary  to the extent we think when we are healthy - keep what energy you have for the essentials.

And you have to think ahead - assistance is available for travelling so it may be worth investigating that on occassions. Combining two energy-expenditure-rich things is always a problem - and sitting at a concert and participating even mentally is tiring - and then you are faced with getting home! It's a pain - but think how much more difficult it would be if confined to a wheelchair.

That is a blessing of pred when you are complaining about the side effects - because that is probably where many of us would be eventually without it. When pred was first developed it was greeted as a wonder drug because they gave to patients with arthritis who got up out of their wheelchairs and walked - almost certainly PMR patients. 

Fatigue and all, I can do so much more now on pred than I could in the 5 years when I had PMR and no pred. But I have learnt to choose my battles wisely and while there are a few things dear to my heart I no longer do, in general, it is a pretty decent life. I am, of course, lucky in that my work for years has been centred on the computer so it is mainly mental exhaustion that becomes a problem and I do sympathise with anyone who is young enough to have to still work and at a job that needs physical abilities.

This remains a problem - doctors are so fixed on the idea that only people in their 70s develop PMR that there is little thought about the aspect of working. That is the AVERAGE age at diagnosis, which very probably all too often represents a failure to diagnose when it first presents, and which doesn't show the span of ages. Increasingly retirement ages are being extended - so the women who are in the majority with PMR by about 3:1, who used to retire at 60 and many of whom possibly didn't work outside the home, are now still in employment. Frequently they are in retail or nursing or caring - and while PMR didn't stop me sitting at a computer in the office next to my bedroom (since I worked from home), it is a major obstacle for anyone who has to travel to be at work early in the morning and who has to be able to move freely.

Perhaps it is something that requires a group to get together and lobby. The authorities do need to realise that in raising retirement age it may impact severely on people like us in the future. GCA is covered by disability legislation in the UK, I know some people in the US, I think with PMR,  who have been successful in getting disability payments. But they are the exception - more often than not the doctors are under the delusion that when they give us steroids we are back to 100% normal and life will go on as before so PMR doesn't pose the problem RA does for example - although in RA there is a really wide range of drugs that can be mixed and matched. For PMR there pred, cheap as chips and, they believe, fully effective. And only old ladies get PMR - already out of the workforce so no longer of interest fiscally. That is going to change over the next 20 years - maybe it will change the perceptions of the fundholders too.