Hi all,
I am in a negative cycle and haven't got the physical or emotional energy to make changes. My muscles ache in my arms and legs, I am permanently exhausted, have a very low mood and racing thoughts. Diagnosed with GCA and PMR last July 2020, reduced from 40 to 15 with a flare in between. When I walk my muscles at top of hips/lower back stiffen and cramp so exercise is agony. Please help, much appreciated 🙏
It sounds as if you have piriformis muscle problems and they are going into spasm when you exert them. I have a similar problem. A physio does mobilisation of the spasmed muscles which helps me a lot. I also find taking 800mg ibuprofen as a single dose (taken with food just once is safe enough even when on pred) and then sitting against a hot water bottle really makes a big difference when it is acute though it might not be enough on its own if it is chronic. You really need to speak to your doctor and try to get something to make the muscles relax or it can become an ongoing problem. It also sounds as if you could do with some help over the mood problem. Depressed mood is very common both with GCA/PMR and with any chronic condition, what feels like the loss of yourself and your old life is like a bereavement and you may well need help to come to terms with it all.
Thank you so much for your response I feel better sharing and getting an answer. I will try your recommendations. I do take anti depressants before diagnosis and this was managed perfectly. As you said I feel like I am grieving and struggling to accept it. I am grateful for my life but keep eating and piling weight on. Need a new head. Thank you so much for your reply, and hope you are well x
You will always get a reply from someone here - sometimes too many maybe!
The eating isn't only the low mood - pred causes the liver to release spikes of glucose into the bloodstream from the body stores. That triggers insulin release and the blood sugar level tumbles - so you crave carbs to bring it back up, creating a roller coaster of up and down blood sugar levels. If you can manage to cut your carb intake, especially processed carbs, you can often break that cycle and it helps the weight problem. It is always worth a try,
I will give it a go, I am definitely craving and eating carbs. I've put loads of weight on and feel too ill to exercise. Hoping to swim or float when the pools open.
This is a really useful website:
You don't need to join anything - just learn what is good and what is less good to eat. Your diet is something you can control without needing to exercise - and once you start to feel more in control of something you will also feel more confident about other things.
I have PMR without GCA, however, I read most posts on this site and it would seem to me that having been diagnosed in July 2020 and started at 40 mg, the lowest starting dose for GCA, you may have reduced too far too quickly and are now experiencing a flare. Perhaps one of those more experienced in GCA will comment.
Seemingly stuck at 7/7.5 mg prednisolone 
Continue on alternate days - 0 and 0.5 mg
Still in flair after 2 weeks on 15 mg?
Stopped pred recently and not so bushy tailed.
One extra mg
