So Tired all the time

I was originally diagnosed with PMR last June and after an initial dose of 15 mg of Pred which only had an improvement of 70%, my dose was upped to 30 mg. All my pain went, also the stiffness and I felt relatively OK. Now I am down to 15 mg, tapering very, very slowly - still no pain or stiffness, for which I am so grateful, but the physical tiredness I am finding so very depressing. I feel that I should be able to do a little more than just dress, eat, do very basic things around the house without feeling exhausted. I also get very breathless. I already had a slight problem with breathing as I have scoliosis and my spine prevents my lungs expanding properly anyway, so I suppose that doesn't help. The last time I went to my doctor as I needed all my medication re-supplied, he asked me why had I gone to him, so I don't expect much help there! Are other people finding the same problems as me? Is this a stage we all have to go through? I would really appreciate your comments. Thank you all for being there for so many people - read this every day - don't know how we would all get on without it!

8 Replies

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  • Unfortunately fatigue is a symptom of PMR and of auto immune diseases in general. The pred reduces the inflammation but does nothing for anything else. I try and have something special I do such as a pamper, a glass of wine, talking to a friend. PMR is life changing and one cannot carry on as if nothing has happened although my rheumie gave me that impression.

  • The fatigue lasted a long time for me - but it often does go eventually even though you still need some pred for the pain. Pred itself can cause breathlessness - and so can other things alongside the PMR. Do try to be patient - and split what you do into smaller bites with rests between. That can often allow you to achieve far more overall.

  • Hello Dobermanlover, I don't know if you split your pred dose? I found that taking half at bedtime (I'm on 10mg) and the other half with breakfast mostly prevents that flagging feeling when your energy levels plummet and you feel like a limp lettuce... just a thought. I also have days when nothing physical gets done, but quite a lot of sitting in the sun with a book or just thinking my thoughts, something I never had time to do before - my body seems to enjoy and require this! Our mental attitude is important with this illness, acceptance of our frustrating limits is vital so try not to waste precious energy feeling angry, which only contributes to the dark forces of PMR! Oh so easy to say, and I'm as guilty as the next person when it comes to having a meltdown :-( I do walk every day, and yes, a bit breathless going up hills, just take it slowly. One more idea, find a more sympathetic and knowledgeable doctor, it makes such a difference to how you regard your illness if they treat it and you with care.

  • Dobermanlover,

    "Dress, eat, do basic things around the house and feel exhausted" describes perfectly many of my days. You are not alone. You are not crazy. You have a chronic medical condition that is just not as visible as a broken leg, or as understood as the flu.

    I find this "stage" comes and goes for me. When I was on about 10 mg I found that switching to taking my pred before bed helped a lot with the type of fatigue you describe. I am just coming out of 6 weeks in that stage again at 5.5 mg pred-Whew! Its rough. It really pushed me to the brink of depression this time. But I feel better now, and so will you...eventually.

    Best advice I can offer is to give yourself credit for whatever small household chore(s) you do accomplish each day, if you're tired sit down or lay down and know in your heart that you are doing what your body needs at that moment, try to reduce/limit any stressors (as piling on of things is what may have pushed me into this stage again), reach out to the people on this forum who faithfully reply quickly and with wise advice to lift you up, and try to get together with friends which always helps me with friendship, laughter, and feeling like a normal person for a little while.

    Hang in there. It will get better. Hug.

  • This is me also. I am on 20mg prednisalone, started on 40mg and although I would say I have about a 60% improvement, I am constantly exhausted, sweating most of the time and feel unwell. I still need zomorph and gabapentin for pain, mainly due to other conditions, but also random pains in my body. My mobility is not good either because of arthritis and sciatica. I am 42 and been on sick leave for 3 months from my role as a support worker. I've only been to medical appointments, so as you can imagine, I have a bit of cabin fever 😀. Anyway first rheumatology appointment is on the 7th June so I'm hoping his expertise will help. I am so lucky though to have the most amazing supportive friends and family and my 16 year old son has been a complete rock to me. The only good thing about this condition is it makes you appreciate the things in life we all take for granted. Sending hugs and best wishes to you all xx

  • Thank you to everyone who replied to my post. I am sorry I didn't get back to you before, but it was a lovely day here yesterday and made the most of the sunshine! That did make me feel better! I had felt so down the day before, hence the post. It is so easy to feel sorry for yourself with this illness, but not very helpful, it is so much better when you can see the good things. We got a puppy earlier on in the year after much deliberation and she is such a joy. She gets me out, as all puppies need socialising and it's amazing how attracted people are to you with a puppy in tow! Also she needs walking round our enormous garden several times a day, so she does keep me exercised. Jenlouh, you make me feel guilty about complaining, you have so much more going on than I do! I do try to vary the doctors I see, but they all seem to be the same - 'get on with it and don't bother me' seems to be the attitude. I don't think they liked it when I mention this forum - I was told I read too much! Jolly good job I do, I don't know what I would have done without you all. Just knowing you are there is so comforting - so hugs to everyone and keep on taking the pills!

  • And a point I didn't mention in my post before - I don't do "household chores" unless desperate! It's amazing what you can classify as unnecessary if you look closely.

    Occasionally a "woman what does" comes in to do the bigger jobs like windows and floors and the bathrooms. I can feed the dishwasher, OH empties it. Washing is easy - I iron what must be ironed. Changing bed linen is hell - we have 2 single mattresses and use separate duvets which makes it easier (have done so for over 20 years since OH had cancer and was freezing in the hottest sunniest summer in memory in Scotland. So he had the heating on full blast!).

    Dust is very patient - it will always wait.

  • Yes I must admit the iron is collecting dust along with the rest of the house! Just fold everything straight from then tumble drier - sorted! Hubby suggested that we get in someone to do some of the bigger cleaning jobs, I think it is getting to the stage when it would be a very good idea. The sun is showing up the dirty windows, the vacuuming is all right in small stages, but it would be nice to get the whole house done!

    And Piglette, thank you for the advice about the glass of wine - don't drink very often, so it very quickly sent me into a state of oblivion!

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