Weak and wobbly

[Tiny_Tim]

I have been on pred for over three years , but in many ways am feeling worse . I have never had the level of pain that some suffer, but am troubled by extreme weakness and feeling wobbly. I rest as much as possible and often fall into bed between 8 and 9 pm .having had two pulmonary embolisms I have had numerous scans, blood tests etc none of which revealed anything sinister . I take a cocktail of medication each day ..blood pressure , adcal alendronic once a week ( only just revealed I also have osteoporosis, probably due to the fact that the rheumy kept telling me I did not need to take it) Am on 5 mg pred daily .cannot get lower and am coping with discomfort rather than extreme pain. Just wish the weakness would go away. Does anyone else match my symptoms , they make me nervous.Having been incredibly healthy and active all my life this constant feeling generally unwell is very difficult to cope with. I wonder if I will ever return to my previou state of wellbeing .

Tiny- tim

[SnazzyD]

Hello, it’s so frustrating isn’t it? Well, it could be down to a range of things such as muscle wasting from long term inactivity, Pred or other drugs side effects or PMR. However, my first suspect would be low adrenal function. Have you ever had a Synacthen (or ACTH) test? It is something that can be done from 5mg but preferably a bit less like 4mg and should be carried out if you are feeling particularly weak at low doses. I have to say I was most miffed when I thought after high doses I’d hit the beautiful lower grasslands of low dose only to find it was a rocky plain. It did improve for me though it is still not right, but some have to have assistance.

[Soraya_PMR]

I’ve been dithering around 5 for a while now, and basically feeling like a wet weekend in Bognor. I can’t get my head round the fatigue and have had to give myself a talking to on occasion. “I have PMR. I’m entering the adrenal zone. What do I expect?” It doesn’t change anything except my perspective.

[SheffieldJane]

Snazzy gives good advice as always. It occurred to me that you maybe moving relentlessly towards 8/9pm and then collapsing into bed. Have you tried a set nap in the middle of the day as part of pacing your day? I have had a number of phases during the 3+ years that I have had PMR when this has been essential to me. I found that it enabled me to have a bit of an evening. I recently discovered that my Adrenal glands are underperforming. This is something I have to wait out, I think, in the hope that they will improve as I gradually decrease my Pred. I can relate to the “ distrust” in my body, when every symptom seems potentially sinister. Take great care of yourself. Little walks are unexpectedly reviving, I find.

[SnazzyD in reply to SheffieldJane]

Yup, the nap. I can miss a nap if I have an excellent night’s sleep but for only 2 or 3 days out of 7.

[PMRpro Ambassador]

I think the weak feelings are quite common - and at this dose could be simply being unfit or a lack of adrenal function may be contributing. It is possible to overcome them to some extent with a very slow building up of exercise programme - and it doesn't have to be the gym or physiotherapy. Walking is enough to start with. And planning to take a rest BEFORE the weak and wibbly feelings arrive allows a better latter part of the day.

There is a guy in New Mexico who at Easter 2 years ago had had a big flare and was in a wheelchair when his wife took him to the rheumatologist. She put him on 30mg which dealt with the pain but Mich could barely walk to the gate and back and thought he'd never get back to normal. We on the patient.info forum poked him - he started with a 5 minute walk out and back at the speed he could manage. At first he had a rest day next day to see how he felt after that. After some days he added 1 minute each way because he was feeling OK the next day. And he kept doing that. By December and the ski season he was able to ski - spending the season teaching small children's classes. The following summer he got his bike out again and was cycling with his mates in the mountains around his home. He was also reducing his dose of pred using the Dead Slow and Nearly Stop approach and is well down into single figures now although he had an injury last autumn - if I remember rightly being over-confident about what he could manage!

Did I mention that Mich is over 80?

[Louisepenygraig]

I don't have any advice other than to say that tiredness and weakness has always been a bigger issue for me than the pain. I also have Fibromyalgia though which muddies the water a bit.