A Newby to GCA

Hi every-one

My symptoms started last October with bad headaches, pain in my ears, occipital bones and eyes...I then had a bad period of facial numbness. Could not lift my arms.

It took 7 months and three consultants to give me a diagnosis and as soon as I was given steroids I began to feel better although the tiredness is at the moment something I cannot deal with. Pain killers help with pain, but nothing can help with tiredness. I also have end stage Glaucoma..which is now being attacked from two sources. I empathise with all of you who have this disease and I know if we keep in contact at least we will have some support and knowledge that we are not alone.

14 Replies

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  • I think the only answer to the fatigue is to give into it and rest, rest, rest. The trouble is if you have been active it is a bit of a shock, but PMR is a real life changer.

  • No you're not alone I think many of us suffer from this debilitating fatigue which isn't just tiredness. As piglette says it just means that you have to rest, rest, rest and mentally adjust to the fact that you are ill, just like if you had the flu and you need to be kind to yourself. Unfortunately family and friends will not always understand how you feel or the possibility that you may have to cancel something or not help/ join in/ dash around as you used to. Just have to try to accept that you will be moving in the slow lane for a while. I think acceptance is the key. Not so long ago PMRpro put on a post about fatigue- did you see that ? wasn't connected with PMR/GCA but explained it very well. What dose of pred are you on?

  • Thank you so much for responding..I sometimes feel a bit of a fraud and I am sure my family think I am putting it on...so good to hear from people in a similar situation. I will now know where I can turn too.

  • Hi

    Thank you for your response...my word it takes some getting used too..particularly the fatigue. I was started on 10 mg. but have been tapering to 7mg for the past few months not sure it is enough will take to my consultant when I see her next month.

  • 10mg seems a very low starting dose for GCA. It's usually 40mg or more.

  • I was on 40mg for five day when I had accuse ayeball pain.

  • Read 'The Spoon Theory' this explains fatigue in a brilliant way.

    You can deal with fatigue but it takes time and you must learn to listen to your body and stop.............

    pmr-gca-northeast.org.uk take a look and also click on the map on the home page and see if there is a support group near you - well worth talking to others face to face.

  • Thank you for your suggestions...good to know there is back up out there.

  • Hi Sorry to welcome you to the club - it's one I wouldn't choose to join - no offence folks. The tiredness really gets me too as I am/was very active busy and now I feel like I am in the slow lane, and because there is very little to show how ill you are people look at you and wonder if you are putting it on because you don't want to do something. The spoon theory explains it well - but it made me cry, becaue I hadn't really thought about what went into planing a day before reading it, I had just slid into adapting as most people do.

    Just remember - you didn't ask for it, it chose you, you have done nothing wrong and it's not your fault. And if you usually rush round helping others now is the time to accept some help yourself and rest. If you can't unwind try Headspace meditation app the first ten days are free. I was not convinced when told about it at first but that was back in March and I am still going strong much to the amazement of my friends who would not have expected me to be a convert.

    Most of all keep in touch with this group - best source of advice help and general morale boosting I have ever found

  • Thankyou so much for your reply.

    I have just got back from taking the dog for a walk and I am kn...Ed My husband has taken over dog walking duties but when he goes to golf I have to try....never know whether I am doing myself any favours but I know if you don't use it you lose it...so if I ca I will but if I can't I try not to feel guilty. Very hard to explain how one feels but to ll of you out there I am sorry you are in this boat but please keep in touch. My eye sight is failing Noe (end stage glaucoma) so I am dreading not being able to communicate.

    Regards

  • Not being able to see well is no barrier to using a computer these day - voice recognition has come a long way. Investigate it now so you can practise before you need it.

  • Thank you for the reply and info. I will research while I can.

    In appreciation

  • Hi Camerashy

    I haven't read everything of yours and the replies, but I just wondered if you have bought the book by Kate Gilbert. This gives so much information about PMR and GCA and would be good for family to read and they would understand all the problems we have. But you do have to give in and rest.

    Take care.

    Best wishes

    Marlene

  • Yes..I the process of reading it, although concentration levels are poor

    Thankyou

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