GCA
Posted , 14 users are following.
i have just been diagnosed with GCA - should I rest more with this condition or carry on as usual
0 likes, 10 replies
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Notes on GCA
lynda62707 Nona_Laura
Posted
Hi...welcome! I've just been recently dx w/pmr (although ,I'm beginning 2 wonder if it's GCA). I'm finding that it's just best 2 listen to your body. I often feel fatigued and when I do, I try to take it easy. Otherwise, just go for it and enjoy the reprieve! Good luck 2 you and keep on posting and reading. There's alot of good info on this forum!
sandy08116 Nona_Laura
Posted
It took me 18 months to get over GCA, Nona Laura, that included the long, slow tapering off prednisone. It's one hell of a journey but it is manageable and treatable. My advice is to get to understand what is happening, what are the effects of the disease and what are the side-effects of the drugs. Fatigue is a feature; light exercise is beneficial but rest when you feel it is necessary. The forum members are very helpful. I hope you have a good, informed rheumatologist who has set out a plan for you. I stuck to mine religiously and everything went to plan.
All the best.
EileenH Nona_Laura
Posted
GCA is a serious systemic illness - and the medication you are on, high dose steroid, is extremely powerful. So yes you should rest - just as you would with any other serious illness. It allows your body a better chance to heal.
Living with GCA (and its sister PMR) reuires a bit of a rethink about your lifestyle - you need to learn and be aware of your limits and stick to them. And it is all about pacing and resting appropriately. Carrying on as usual is likely to result in you hitting a brick wall of fatigue - it happens to us all, whatever stage we are at and whatever dose we are on - and once you are there it takes much longer to recover than if you acknowledge how you are feeling and rest BEFORE you get to that stage. Many people include a planned rest - and while it sounds contradictory that often gives you more useful time in the day.
The links in this may help explain:
https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...
Nona_Laura EileenH
Posted
EileenH Nona_Laura
Posted
And stick with us - or the HealthUnlocked forum is also informative.
Nona_Laura EileenH
Posted
Thank you for that information. I’m still very up and down and finding it hard to accept I have this condition!! Silly I know especially as there is nothing I can do. I’m not sure if this is a side effect of pred - but this morning I woke at about 6.00 with the most ghastly pain in the chest, lasted for about 30 mins. Eventually I sat up in bed and drank some water and it subsided. Has anyone else experienced this?
Also, no-one seems to have touched on this topic yet (husbands) mine is finding it more difficult to deal with my GCA than I am. He keeps trying to control what I do and when I do it. We seem to row all the time and given - I thought we needed less stress not more, this isn’t helping me. If I have to stay on the pred for 1,2,3 years I don’t think I hold out much hope for my marriage. Can anyone advice?
Thank you in advance.
Nona Laura
EileenH Nona_Laura
Posted
The rows are probably contributed to by you being on pred - and your husband is probably very concerned about how ill you are but his way of showing it isn't suiting you (sorry, can't think of another way to say it). Most husbands go into a blind funk when their wives are ill, there are exceptions who are wonderful, but they are exceptions. Tell us a bit more about what he wants/doesn't want you to do.
Would he join one of the forums? We have several spouses who have joined one or other just to get information about living with PMR or GCA from their point of view or that of their partner. Most people are terrified of GCA - the change in them/their partner is enormous quite often and both PMR and GCA are life-changing events, albeit temporary for most people but no-one knows that at the start.
I suggest you start a new thread where everyone will see your questions and tell us about what you are experiencing. Where you feel you need help or suggestions about how to cope with something. With specific things we can help you - but I could write for a week about generalities that still don't answer YOUR problem. But on the forums you will meet others who have/have had the same difficulty who can say how they dealt with it. The HealthUnlocked forum has even more people with GCA than here - a problem like difficulty with partners will get a lot of responses
rich38490 Nona_Laura
Posted
Welcome to this discussion group. I would go with Eileen's recommendations. I was very active prior to my PMR diagnosis in July. I had fairly aggressive workout regimen for a 75-year old. I reduced that to endurance activities only and at a greatly reduced level. For me, any strenuous exercise involving upper body aggravated the PMR and I paid the price in pain and stiffness. Best wishes to you.
Tinapoly1 Nona_Laura
Posted
Hi Nona, I think it is very important to rest when your body is fatigued. My fiance has been going through hell for 7 months with acute myeloid leukemia ,with multi chemos 6 times,a transplant & is so ill with Graft vs. Host Disease now and being his caregiver has been so exhausting that I have noticed that my 7.5 mg dose that I have been on for several months is no longer taking care of all my pain from PMR/GCA. I have no doubt that my body is letting me know that I need to rest again but sometimes it is not possible.
patti52108 Nona_Laura
Posted