Hi I haven’t checked out the archives re this, but thought I’d start a new thread first in the hope of getting any new ideas, suggestions and research re this. Sorry I moaning again
My pain is manageable atm. It’s the overwhelming and total exhaustion I find so hard. Today all I’ve done is a 10 min drive to a small shop, made a casserole and changed a bed( the latter was a struggle). I now feel like my arms and shoulders are so heavy I can hardly hold them up. I am dragging myself upstairs to lie down. Every step is exhausting. I’m 6 months since diagnosis. I usually only do one thing per day ie half an hour level walk with my dogs and am only up for 5 hours before this becomes unbearable and I’m back to lying down. I’m taking 15 mgs pred since August
Does this subside please.
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Wraysbury
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Has there been no suggestion that you should be slowly tapering? Or do you still need 15 mg to control the symptoms? I, unlike others, didn't feel fatigue with undiagnosed PMR, but did develop it when on pred, although only after tapering lower. and I still don't have the energy I once did and can sometimes sort of collapse in the middle of a busy day. Maybe pred, maybe PMR, it feels the same.
I have tried tapering first time GP suggested going down to 12.5 and using alternating days of new and old dose. the pain kicked straight back in, so I went up again. After a month I tried going down to 13.5 and stayed on it for 3 weeks after using the DSNS method. Again I couldn’t live with the pain. I’m going to try .5 next but need to leave it a month at 15 to settle down again.
Unfortunately both Pred at certain doses -( seems to differ from person to person) and PMR can cause fatigue. And of course it’s difficult to know what IS the cause sometimes.
If it’s the PMR, the maybe you are trying to do too much for the dose you are on. If your pain is controlled then maybe you could try splitting your dose, usual is 1/3rd bedtime to enable you to get up in morning, and then 2/3rd morning to get you through day ( maybe you could take yours around 11am , a little later than usual).
If it’s the Pred that causing it, then usually the fatigue reduces as you taper.
Like HeronNS I query you still being on starting dose of 15mg, is that correct? That may be your problem.
When I hear someone say "My pain is manageable atm." I immediately wonder if they are well enough managed or if they are accepting pain thinking it is a "good thing" and a lower dose of pred is a reward.
Did you start higher? Have you tapered at all? If so, how? And, if so, were you better at the starting dose than you are now?
I had PMR for 5 years with no pred so had constant low levels of pain - and overwhelming fatigue as soon as I did much. Constant pain is very exhausting, especially when it is added to the pain of autoimmune disease.
Yes I’ve just had a discussion on constant pain being such a debilitating scenario- not GCA but Arthritis- and many other things as well of course.
Even my son, who is ringing every night to keep me under control (ha ha😏) has said how much different my voice sounds and how I looked day after operation compared to my week with him at Christmas.
Didn’t cover that up very well did I? Although, for a man he is very perceptive.
Fatigue problem for me too. Before starting pred and now. Find some days definitely worse than others. If I've had broken sleep always worse next day. Currently on 12.5mg tapering slowly hopefully. I just listen to my body now and do what I have to and relax with crafting, reading etc and accept I need to rest.
I am finding the acceptance so hard. No matter what I say here I keep stuffing up. Xx
Hi Wraysbury
Please never think it’s moaning, it’s a very genuine question & an issue a lot of us suffer from.
As the others have questioned that you’ve been on 15mg since August, have you had any blood tests? Sometimes we can have more than one thing going on at the same time.
When are you due to see your Rheumatologist again? Also, is there a Nurse in the Rheumatology Team you can ring if you needed to bring your appointment forward?
A trip to your GP a general once over & some blood tests maybe the way forward.
In the meantime, Bed Changing is a three step process which includes lying down on it often half way through! If my DH didn’t deal with changing the bed I’d sleep in a sleeping bag! All l do is fluff the pillows & straighten the throw!.......
Thanks I’m still waiting to see a Rheumatologist. I had blood tests initially but my Gp has been off sick since Nov. She’s back now so I will go and see her. I will start tapering again but this time .5 using DSNS and hopefully my body won’t react to this! I know I must rest, and I have no choice once the unbearable heaviness takes over my arms, shoulders and creeps down through my body. Cos all I can do then is curl up and sleep. but I still find it so hard to come to terms with being this inactive and useless 😩
Changing the bed ! Oh my what a ridiculously mammoth task ,you could not convince any one who had not experienced the sheer uselessness of your arms as though they are not connected to you muscle system .Weird . Its hard to come to terms with it . I remember the first few times this happened and I was thrashing around in anger and frustration at myself .Oh the pleasure of using language I had never used in my life before . Don't feel alone ,it's one of the par for the course ones . It will get somewhat better and you will improve but it can't be rushed .I began to blame the duvet .Worra saddoo I was .but I had to blame something in my frustration .
A few wks ago I used the last of my strength to shake the duvet, it flew up and pulled the light fitting out of the ceiling which landed on my forehead!!! I had a huge egg bruise. That really made me shout and cry!!
I found a goodish solution albeit a tad expensive, but maybe a future thought.
When my hubby was ill we discussed getting an adjustable bed mainly for him, but I did have undiagnosed GCA at the time so making the bed was a nightmare.
Anyway time passed and we didn’t get one because he had a hospital bed at home, but after he died I did buy a new double bed.
I do have the head slightly raised for sleeping, but the best thing is both head and foot come up high and enable the removal and refitting of fitted sheets - standing up, so no strain on the back or arthritic shoulders.
The duvet is still a bit problematic, but at least half the job is easy!
Hi, I have had exhaustion at different levels from 60mg Pred to the 5mg I am on now, I recently worked far to hard and for the last few days have been so tired it was like an illness. However, I was invited out last night, I didn't want to go but I forced myself, Now I am NOT recommending this as a cure, but!! I went to a pub quiz even though I wasn't much help, to tired to think, had a couple of glasses of wine and a big laugh all night. Slept like a log for 7 hours and feel stiff and achy, but no where near so exhausted and I feel positive and happy. I am normally a busy person and the tiredness was quickly getting me down. I think laughing with friends really helps.
I would never change a bed, I can strip it but can't pull and tuck or do the duvet. Hope you have someone in your life who can do it for you. I ensure fresh linen is available, OH maneuvers it. Same with the vacuum, OH pushes it about and I admire his work.
I am finding I have dreadful fatigue below 7mg, I have a meeting tonight for our local village hall and I am chairman. That always knocks me out. Mind you the fact I am up half the night watching the Australian Open tennis does not help!!
As a few others here have suggested, the dreaded DF (Deathly Fatigue - physical AND mental) is likely to be a conspiracy between the underlying Auto Immune disease process that drives PMR and (possibly) being on a lower dose of Pred than you need at any time / reducing by too much, too quickly. That's assuming that you don't have any other health issues which might cause the DF.
That said (and as mentioned before), in my experience the DF can manifest itself independently of the other PMR symptoms (Pain, Stiffness) and even if the Pred dosage is about right / pain & stiffness are relatively under control. Of course, blood tests might give some clues, and also a Synacthen (ACTH) test for Adrenal function: but from what I've learned here there currently seems to be no single, definitive answer to the DF issue for many of Us Lot. Personally, I tend to experience it more in the cold, damp dark winter weather - but that's only me.
If it's any consolation: you are not alone in your frustrating experience of DF and it's often a case of rolling-with it, not trying to fight it, and accepting that it's part and parcel of PMR (like many AI illnesses) until it passes - which it usually does in time. I know, easier said than done for some of us who are used to being very active.
Hope this helps
'Uncle' MB
Ive found the fatigue more difficult to deal with than pain or the underlying condition. It can be overwhelming and I’ve even hit a sudden wall of fatigue where energy has physically seemed to drain away from one second to the next. I found it worse after starting Pred. Currently at 4.5mg after approx 8 months. Fatigue is the same and all I want to do is sleep, but it’s like feeling life ebbing away, so I do very little, rest and carry on. Much like everyone I guess. It’s a life changing condition.
The exhaustion seems overwhelming at the time, but will improve eventually. Try not to get downhearted - eyes on the prize and all that.
I started on 40mg, 26 months ago, and felt something like you do, for much of the first 2 years. Shop, cook + bed change sounds like a lot to me! Best take advantage of being able to rest interminably without feeling guilty!
But I'm going through a good patch at the moment - fingers crossed - and have just begun a functional fitness course for people w chronic conditions - fingers further crossed. It may all go downhill again as I next attempt to reduce, but at the moment I'm beginning to feel almost human again.
Atm I'm on 7.5 mg, and v apprehensive about going down to 7mg - been putting it off, as 7 and below were disastrous last time. But if we can stay optimistic, I think it helps.
Dear Heart...i just read your post...and its clear that you are struggling with the early stages of this debilitating disease.
To answer your question...yes, it does get better...
In my experience,...however, it will take you some time to get past it. So...while fatigue is your symptom...STOP!
Just STOP and let yourself begin to heal.
If you need to take a break, and lie down...do it.
Doesn't need to be a long time...maybe 20 or 30 minutes..maybe longer...so OK!!
When you feel rested, get up again and try another little task.
The world will not stop while you work through this part of your il"ness.
And...if others in your household question your need to take time to heal yourself...tell them you are SICK!
No...you dont look sick...but you are!
That fact took me about 2 years to fully accept... after all...I looked fine.!
What my 5+ years with PMR has taught me...
this is a disease that the medical literature and even the doctors, do not fully understand, although they are getting better.
Symptoms of this disorder can include emotional disregulation, depression, brain fog, memory lapses, muscular pain all over your body, visual issues, and lots of other problems that are confusing and just plain bizarre.
PMRPro, One of this forum's premier wise ones, says, PMR is not life threatening...but it is life changing.
So, your task is to learn to give yourself permission to be sick...then give yourself the same permission to learn to take care of yourself. Others in your household will need to rise to the occasion and take some of the load...you can no longet be the only one who does it all..
Thanks so much for this reply. I’m going to show it to family so they might be able to understand better. Bless you. I wish we all lived near to support each other, but this virtual support is invaluable. X
💜🙏🏽 i show family and friends information (in small doses), and eventually, they have come to know PMR as an illness that takes its toll almost every day.
So...when I stay home from an event others are attending,...I give myself permission to enjoy "alone" time. Sometimes that means a glass of wine and a good book, sometimes I putter with one of my art interests, sometimes, I take a nap!
Giving myself permission to do this means fighting the voice telling me I’m lazy, look what you’ve become, you’ll never get going again etc etc. But I’m getting better at ignoring it!!!
keep up the good work! You are dealing with a wicked illness, about which most of knew nothing, before our diagnosis.
Please be as kind to yourself as you would be to a dear friend experiencing PMR, as you are. You will get stronger, but it takes time, and patience, and recovery is not a straight line.
Great to hear that others are exhausted and it is not just me. Not that I would wish it on anyone. I was put on 60mgs in Feb 18, I am now down to 5mg but the exhaustion gets no better. Role on January when I finish my 2 years. (hopefully)
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