Please help- worried about husband sleeping too much, aging issues?

Just now, after reading and replying to this post, I was on another forum where someone posted a link to an essay called 13 types of fatigue.  Google it.  It gives a good overview of the many types of fatigue which can afflict those with autoimmune diseases.    

Hi Jae

i think while we are struggling with PMR and some of us GCA it is like being in a bit of a 'bubble' - it feels so challenging just to be coping with the disease(s) and the medication that we are not always as available as we would wish to be for our partners or those who are always supporting us. I am sure we often don't have a clear - and certainly not 'objective' picture of how this illness has changed us in the eyes of others as we are just trying to negotiate whatever is coming next. So your feelings of concern and even frustration are shared I am sure by many of those impacted indirectly by this erosive illness which seems to enervate us despite the initial 'uplift' and pain relief of steroids and our best efforts to 'get on with it' - as we also sometimes try to pretend it isn't really happening.  

The 'best' thing about this auto-immune disease is it usually does disappear as you would know - although in the intervening years we are yes - all STILL aging - which would be happening at various rates anyway.

I am a 65 year old woman and look at myself in the mirror wondering why I have 'aged' so 'fast' - although others tell me with my round (steroid) face and thinner body that I look 'well' even when I don't feel it - although I think it unfair that I have this condition. But I am fortunate that I have a good chance of remission - or full 'recovery' one day and will still be relatively 'young' if we consider people are living much longer these days.

So take heart - your husband may never be 'young' again but he will very likely FEEL 'younger' again and there's lots of good stuff still ahead for you both. In the meantime the 'patience' word seems to loom for all of us attempting to live each day in the best possible way while trying to get over the PMR mountain and down the other side.  But I think in the meantime it is VERY important to try to find something in every day that is personally meaningful cos we all only have 'today' in the end and not everything can be about 'tomorrow'. This forum is itself very supportive and a truly invaluable source of encouragement on this so-called "journey" (as it is often described).  

All the very best 

Rimmy

I think you may be better finding a specialist in geriatric medicine - and be sure that this IS the PMR we talk about. PMR is just the name for the symptoms - it has a lot of potential underlying causes. 

Vit D, thyroid function, all sorts of things may be slightly (or more than slightly) "off" and they all mount up.

But you too need some support to come to terms with these changes at what, for these days, is a very young age. I do know what you are experiencing - my husband had cancer at 41 and nearly died because it wasn't identified until the tumour was very large. He underwent aggressive chemotherapy, surgery and then radiotherapy. It was heartbreaking seeing the difference in him and his determination to still do things that really were beyond his strength. He never did get back to pre-cancer health but he does pretty well all things considered. 

I still function at a similar level to most others of my age - note, similar and most. My neighbour still clims mountains and is a bit older than me but she's been doing that most of her life, I haven't. But I didn't for over a year after a major flare of PMR 5 years ago - I was on crutches for 9 months, walking the couple of hundred yards into the village was a major achievement. There is no reason why he shouldn't get back there - but you will need to be patient. 

The article Anhaga mentions is "13 types of Sjogren's fatigue" - it is on the Sjogren's website. Why they think it is just Sjogren's I have no idea. It is autoimmune fatigue!

 

As you have read many times if you regularly follow this forum, each of us has different reactions and symptoms from pmr and prednisone. In 2010 I was diagnosed with pmr and put on prednisone. Prior to the prednisone for six month I was more than fatigued I was not able to to much more than sit in a chair. The prednisone made the symptoms go away except the fatigue. I could carry on my normal routine but I took naps and some nights I slept 12 hours. In three years the pmr went away and I got most of my energy back. I was 72 years old then - 78 now.

Hi  Jae62606

I  wish I could be of more help to you, as I was only diagnosed with PMR in March of this year and have been on Pred since then, I have also been tapering my dosage by 1mg a month, I have some of the stiffness returning and sweats and breathlessness, but I have not had the tiredness that you say your husband has had. I do believe with

keeping in touch with others that have some of the same systems has helped me enormously, and not feeling alone and isolated when friends don't understand about weight gain sweat etc. 

I was excersising and did not relise that I was not able to do what I did before I was diagnosed with Pred and my heart rate was so high because I thought I could still do the same work out. I have taken others advice and reduced the intensity of my workout,  and reducing the time, to give myself time to recover.