Extreme fatigue with PMR

That's very kind of you Constance. I didn't realise how low this condition could bring me and others. I have had a very helpful message from Eileen so will follow this up. 

With kind regards to you too.

Thank you for your suggestions Eileen. Much appreciated. I am a retired health care professional so should benefit from them. I have never thought about considering ME/CFS but it makes absolute sense. I have asked my GP to put me on the National Exercise Referral system, to see if there is a way I can gradually get back into full health. I have an assessment for this on 15th, but in the meantime will check your links. Thanks again. 

Following on from your suggestions, I have been checking the links to ME/CFS and was startled how these descriptors fitted my symptoms. I have printed off the primer for health professionals which provides a good basis for treatment but also understanding where NICE comes into it and what management of the symptoms I can expect. I hope you continue to be as well as you can be. Kind regards, Hilary

It was your comment about being exhausted for days after doing something that clicked for me.

Good luck!

Hello again Eileen. You were spot on. Checking out the links you suggested was a real revelation. I certainly fit the main criteria for ME/CFS, the main feature of which is post-exertional malaise. It seems as if, therefore, I have PMR and CFS. I am greatly relieved in one way. I couldn't understand why I felt so ill. I am due to have an assessment next week for the National Exercise Referral Scheme. The CFS puts a whole new perspective on which grade of exercise regime would be best for me. I am still on a tapering dose of prednisolone, down to 7mgs from 15mg last August and will continue with this. I am also taking vits B12, C, D, Co Q10. Since I have been unwell it has felt overwhelming and I have felt a bit helpless. Comfort eating has increased my weight by 21lbs. I have decided to eat more healthily and lose the excess weight. Anything that gives me a feeling of control over some aspects of my health. Thank you to everyone who has made helpful comments on this forum. I will keep you posted Eileen and hope you continue at optimum level. Thanks, Hilary.

Cut the carbs! Drastically. It does work to get the pred-associated weight off - I lost 36lbs and it is the only way I can lose weight while on pred. I've tried enough! Many others have had the same experience.

I know exactly how you felt - the 5 years I KNEW there was something wrong but no doctor could identify it because the blood tests never wavered I didn't know what to do with myself. Every afternoon I would sit down and fall asleep, wake up and be desperate for something, anything to eat in the hope I'd feel less awful. Didn't know what but it needed to be sweet! Which was totally not me, I don't really do sweet. Within hours of taking my first pred it disappeared! Haven't had sweet cravings since - bizarre or what? But I'd put on weight in that 5 years despite going to Rosemary Conley classes and it took years to find out how to deal with it. Low carb!!! Really very low carb to lose weight, low carb maintains my weight - but a week of eating carbs at a meeting and I put on over 5kg  

Good luck - and hope the exercise programme helps. Do you need a diagnosis from anyone as to CFS? The thinking on the best way to manage it does seem to have changed in recent years. 

I've been reading loads on ME/CFS, with a wide range of views and findings in the research literature. I seem to be at the mild to moderate level, for which I am thankful. My heart goes out to anyone in the more severe range of difficulties. Have just skimmed through the NICE guidelines and given the restrictions in funding in the NHS I am wondering what services in other areas are like (I live in N. Wales).

I am grateful for the info on low carb diets. There is no advice on what eating regime to adopt, so it seems down to the individual to see what works. I do have a sweet tooth but not necessarily uncontrollable. I eat when I am miserable. Can't walk far but am encouraged by the possibility of a blue badge. My car really is my life line. I will certainly look into low carb eating. I eat healthily usually but when I'm on a downer I'm shocked at how much I can binge eat!!  Not good.

It was a few months before I finally got a dx and put on pred that I realised how dependent I had become on my car. If I couldn't drive there - I couldn't go. I was stopped from driving by a specialist who didn't listen to me and ask ME the questions - and she decided there was a chance I'd had an epileptic episode. I hadn't and the other things she'd been told by OH had long been investigated and labelled ("Oh, I didn't know that..." he said). Anyway - no car for a few months at a point where I could barely get up and down stairs wasn't funny. I managed to get here to our flat and with no stairs I actually managed to get up the mountain to ski! The movement of downhill skiing is perfect mobilisation therapy for PMR/bursitis hips - who knew?

I did the online research here - and found my diagnosis. The only problem was convincing a doctor. He still wasn't having it but referred me to a rheumy - who also didn't believe me. But he DID give me a 6-week taper of pred to help me over a trip to the US. The pain and stiffness was gone in 6 hours - and was back in 6 hours after I missed the first tablet! A different GP was convinced enough - and, as they say, the rest is history.