Fatigue, rest periods, work

[People1]

Did anyone find they had to take frequent rest breaks with GCA, particularly in early days? I have been on 60 mg of prednisone for a week and can only do very little without huge fatigue. Is this pretty much the way it works for awhile? Do fatigue levels eventually improve and if so, when? Like most, trying to get a read on the trajectory of this illness, though I suppose nothing is etched in stone. Do most people manage to continue to work during the early days of GCA? How do they manage it?

[DorsetLady PMRGCAuk volunteer]

Hi,

To be honest I don’t think many can work in the early days of GCA. I know I certainly couldn’t have, but like most on here I had already retired.

The fatigue is a big part of GCA, hopefully once the Pred has done its job you should feel better, but certainly not back to normal. Learning to manage your fatigue is a major part of your treatment, and to most of us it comes hard at the beginning - but you do need to get to grips with it.

In your first post I gave you a link to my post for new patients. You need to look at the links within that which deal with fatigue and pacing.

[People1 in reply to DorsetLady]

Thank you so much DorsetLady! It seems like you are the Wise Woman and Great Mother of the group here, which is wonderfully comforting. I think you are right. Pulling back is essential. My job takes me all over the world but there is no way that is happening at the moment. I am re-reading the links you sent me right now. So grateful to you....

[DorsetLady PMRGCAuk volunteer in reply to People1]

Just one of them!

Unfortunately my journey with GCA was not straightforward so I’ve been there, done it, got the t-shirt (bit bloodied and torn) - but most importantly I’ve come throught it!

As I say many a time, life does go on with GCA, but at a slightly different pace. Initially it takes time to get used to the new you- and it can be very frustrating at times. But you will find a way to work again, just needs a lot more in the planning stage - and you being realistic in what you can do , or more importantly can’t do! And don’t be reticent in asking for help - whether that’s medically, physically or emotionally.

What I’ve learnt on here over the years, GCA (and PMR) seems to affect strong minded, energetic people- which initially comes as a shock, but usually means we will find a way through it!

[SnazzyD]

Hello, my GCA blew up properly over 48 hours so I went from a working, active 54 year old on Friday to a pile of feebleness on 60mg by Monday. I moved in slow motion and had to choose one activity a day such as hoover a room and that was it. I was pretty knocked by it until about 20mg, but wasn’t normal at all, the main issues being muscle weakness and needing a solid sleep in the afternoon. Keeping on an emotional level and concentrating was tricky too. What I hadn’t realised that reducing doses came with challenges too and I’d say that once the high doses reduced a bit, withdrawal has been just as much an issue as side effects. Everyone is different but I would say, plan by all means but make sure you have contingencies. This condition is not one that goes away because of Pred which is just there to stop the damage not cure you. Your distressed body has to decide it is going to stop attacking itself in its own time. Somehow one has to make space for that, more space than we would like usually and that is often the biggest challenge of all it seems.

[People1 in reply to SnazzyD]

Dear SnazzyD,

The is exactly what happened to me. One minute finishing up a PhD dissertation and traveling all over the world for my job at age 65 and then Whamo! It hit me big time. GCA symptoms for a month before diagnosed, put on prednisone 60 mg and still awaiting TAB results, but with my symptoms my neurologist insisted start the prednisone now, especially with jaw pain, severe headache for a month. and blurry vision in left eye and all the other usual symptoms systemically. I think I need to buckle down on the meditation to assist my body in realizing there is no good reason to attack itself. The main issues I have at the moment are the fatigue and pressure at the temples,(thank God the dreadful neck pain and severe headaches have lifted, but they have left me with a bit of brain fog....not sure if anyone else experienced that...) but now I am understanding the temple pressure may be jaw related or even side effects from prednisone. Time for a significant readjustment to the lifestyle.

[SnazzyD in reply to People1]

Yup

[People1 in reply to SnazzyD]

Also Snazzy how long have you had GCA and did you have inflammatory markers and positive TAB? Also PMR?

[SnazzyD in reply to People1]

March 2017. Not worked since. TAB done 8 days on 60/40mg Pred - negative. Inflammatory markers within normal range but up for me.

Symptom relief within 2 hours of first Pred. Eyesight shutting down but no obvious eye problems seen by opthalmologist.

Started 60mg, now on 4mg but very wary. Have been on a mega low carb diet. No exercise except walking.

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk......

Have a read.

Fatigue is an integral part of autoimmune disorders - your body is being attacked by its own immune system and the effect is like having permanent flu. Fatigue is the body's way of making you rest - to let your body have the best chance of healing.

For some people pred also causes fatigue and it almost always causes poor sleep - and poor sleep leads to fatigue.

You have a "new normal" - you won't and shouldn't be able to carry on as you did before. You have a serious systemic illness - you are ALLOWED to be a poorly person. Don't fight it - it wastes energy you can use so much better elsewhere.

It will get better. In a year you will look back and see how far you have come - maybe even in 6 months. Ask mamici when she gets back from her holiday how far she has travelled already. It sounds a long time - but it isn't really.

[People1]

Dear PMR Pro, Thank you so much for your kind words. When you are used to functioning at high speed it is hard to throttle back, but have no choice at the moment. It’s strange but it’s almost like we have to hear someone give us”permission” to just unplug. Thank you for reminding me of the serious nature of the illness and also that it’s oknto be a poorly person for awhile. Sometimes I think these things are just our bodies way of saying enough is enough.

[Fieldofdreams in reply to People1]

So right! We punish ourselves to achieve when actually I now feel I am achieving more by doing less rubbish (haven't watched TV for 2 weeks) instead I take a yoga nap... relax and wake up feeling I can do something worthwhile. The quality of what I am doing is so much better. Your body took the plug out because society wont let us.

[fmkkm]

Hi People,

I have had GCA for 3 years. I had all your symptoms along with a very increased sed rate and CRP. I did not have a TAB. The first year I had a window of opportunity in the morning for around 2 1/2 hours to do something, this would usually be the store or library or Dr. appt.. That was it for the day. I could not have worked, sorry! The other debilitating factor is brain fog, I still have an occasional day of this. After almost 3 years I still take a 2 hour nap most days. I am slowly recovering, down to 4.5 mg (10 when a major hurricane hits, LOL). I walk 4-6 miles a day now and pay close attention to my diet. Hope that helps and does not distress you too much. It’s a journey but I have learned a lot along the way. Best!

[Hidden]

Hi People1, I was diagnosed with GCA in 11/2017. The doctors concluded that I had probably had PMR for a few years before that. I worked part time at the hospital and volunteered as an End of Life Companion at the local hospice.... but all that came to an end the day the "headache from hell," arrived. For about two months I did nothing, but lay on the couch. When I was able to do small insignificant (things like make the bed) it wore me out completely! I was on as high as 80mg and I am now down to 27.5! Yes, it gets better as you reduce the Pred, thank goodness! I still have good days and bad days, but nothing like it was those first 6 months!!!! Gang in there it gets better! In case you might be interested, I have written a blog, since I was diagnosed. It helps me cope and some people say it's entertaining and resonates with them.... here is a link. rantingsofamadwomanblog.com/

Best of luck to you!

[Fieldofdreams]

Hi People1,

I diagnosed on 13 Aug, on 60 mg, tried to do things to tie up stuff but in the end had to stop. I managed a holiday 3 weeks later though (see my earlier posts) and now on 40mg... its a tough ride at first but it really a day at a time. I am managing some easy work now but having to change my life style - for the better though - I was at burn out point when GCA arrive. Dorset Lady and SnazzyD are my touch stones and I have felt blessed to have them on this forum. As SnazzyD said one task a day was a triumph... lol. But yoga has also helped me. I finished a major show on the 12th (struggled all summer) trying to do some PhD work, plan 3 other shows and then wham! I am 57 at the top of my game. Everything you say is exactly as it happened to me. I am 35 days in now and actually loving my new way of things ... the steroids are hideous - insomnia ... ahg - moon face has arrived but I have a fabulous diet now and have actually lost a couple of pounds... I went to a nutritionalist (I am vegan) and doing yoga and meditation in small doses each day. For me it was a major wake up call. And i feel blessed. DorestLady wasn't so lucky and lost part of her sight. This forum will keep you going especially in the early days. Dont despair and try to keep positive - see naps and rests as a chance to be nice to yourself.

good luck.