Exhaustion

I'm in my 10th month of PMR, and my fatigue has disappeared, so maybe yours will too.  I had terrible fatigue, and it was hard to trace to PMR, because the pred. had also given me diabetes, and I had a raging case of Mono.  All three give fatigue, and I had it.  i had to get off of pred completely to let the mono resolve, I worked to fix my diet and meds to quiet the blood sugar, and then after a month of agony without pred I went back on.  I'm telling my story so that you can take some hope that your fatigue may resolve too.

Hi,

I am sorry you are suffering, it is without doubt a horrible illness.

I was diagnosed in May although I had symptoms for 12 mths before undiagnosed.

I can feel you're despair, the fatigue not only renders you immobile I think that affects you're thinking, ie will I be back to normal whatever that may have been.

A lovely lady on this forum said "try to adjust to you're new normal" .

I have been in denial with this illness, kicking and screaming at my lack of ability to do the smallest of tasks, brushing my teeth sometimes was a huge effort.

Some people find the pain unbearable, for me it was and is at times the soul crushing fatigue.

However, it does get easier and the dark days of little achieved become less.

I try and focus on a rubbish day today has to be a day nearer getting better.

This forum has been my sanity,

Keep in touch.

Take care

the "what will I be like today?" hasn't yet left me after more than a couple of years and down to 2.5mg/day. Am I stiff or painful? Do I have the energy to get out of bed or can I leap tall buildings? Can it be a day of action, or a day of sitting and staring? Is my sense of humour working?

It was worse in the beginning as I learned what I could and couldn't do. A sense of loss. And a long time to be a little bit stable. The difference between pred side effects and pollywhatsit difficult to identify at times. And keen to vanquish the easily identified side effects. Then reduce the pred to upset the apple cart. A most unenjoyable roller coaster.

To an extent I can manage my way round pain and stiffness. Been doing that for years with other chronic aches and pains, though pollywhatsit is a bit more demanding. The tiredness/fatigue/lethargy/demotivation/non-energy was almost my nemesis. That overwhelming sense of all the things I should be doing and absolutely no way of even starting. Frozen, like an animal caught in the headlights. The sense of disappointment at not doing things promised to others, either not at all, or not to usual expectation. Some days my pred infested brain meant I couldn't remember what it was I thought I should be doing.

In the early days of treatment the prospect of a short walk was all a bit scary, wondering if I could make it home. Exercise was just a frustratingly unachievable thought. And the resulting loss of fitness added to a seemingly irreversible downhill spiral into more misery. All helped by a bit of weight gain.

Not quite that bad. I walked as far as I could. Sometimes a whole km. As far from vigourous exercise as one could imagine. One step at a time. Hardly exercise at all, but a feeling that something is better than nothing. Not forced, but willing to push the boundaries a bit. And slowly, inexorably, things improved. A spiral reversed.

Difficult to describe the almost imperceptible time when I felt a corner had been turned. I think I was lucky (I always am and it coincided with a bit of rehab for a coronary stent. I hate gyms and routine. As I hesitantly moved the gym equipment one little step at a time (why don't treadmills have downhill?), wary of a flare, I gradually regained some fitness. And the all important energy. Not strength, not strenuous, but yesterday's "a little hard" became today's "a bit easy".

At 2 1/2 years I don't have the energy I had before being pollyed. But I have more than I did a year ago. A 10km walk through hills lets me feel the difference between exercise and polly - how magic is that?

Its a journey. No quick fix. I get the impression yours has just begun. Medication, diet, exercise, state of mind are all part of the balance that helps one manage one's way around the obstacles. The balance changes over time, one does what one can.

I don't think I'll ever quite accept that I'm ill. But certainly not the other extreme of denial. Perhaps acceptance without surrender. Just a somewhat grudging view of reality. And a bit of determination to keep pushing away at the boundaries being pollyed imposes, and hopefully will fade completely - of course they will.

Being on pred is only one part of the management of PMR. You have to pace yourself and rest appropriately too! 

I bet you have been rushing around catching up on all the things you weren't able to do pre-pred??????

I notice you also complain of back muscle spasms - ask your doctor to consider whether you may have myofascial pain syndrome - it is often found alongside PMR and is caused by localised concentrations of the same cytokines that cause PMR inflammation. They often respond to higher doses of pred but then return as you reduce the dose - but they respond much better to localised treatment of them, in the form of steroid injections and manual mobilisation of the trigger points which form on either side of the spine in shoulder muscles, about rib level and in the lower back. Improving any pain due to them makes the PMR pain easier to manage with a lower dose of oral pred. Some people find that Bowen therapy also helps - not the PMR but the add-ons.

Hi, I hear you. I am on 35mg a day Pred for 6 weeks now, had PMR since April this year and I have no energy at all. My muscles are affected in my glutes and legs, I feel like I am walking backwards through water at times, and then find sweat running off me like I run a marathon. Crazy : I'm also tired all the time : some days are worse than others for me: We now have to pace ourselves, its a whole new life change for us : I find if I push to hard one day, it will wipe me out for 3 : So it's better to take it slow, I am lucky I am retired, so I can do this. My heart goes out to people who are younger and also others who have to work and feel like this: Don't feel guilty : Cheers

I feel your pain. Right before I was diagnosed 2 years ago, I was hosting Father's Day barbecue for my family. I nearly collapsed from exhaustion. I abandoned everyone toward the end of the barbecue. Like you, I didn't want to cancel, and so I forced myself to follow through. Hope, in time, you will have this PMR under control.