Why do we crash when we do things

I have been feeling so much better recently, after rituxan treatment. My head ears loints, lungs working so much better. Then spent a few days away, and a few days rest then doing some baking for a party and now back feeling absolutely rubbish again.. Have tried to pace mself but still have dropped like a stone. Feeling really frustrated. This disease (WG) ia so unpredictable,

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  • Hi Theresak, it is so frustrating and you have hit the nail on the head with 'Unpredictable' . I have CNS Vasculitis but i am lead to believe that fatigue follows a common thread throughout the various forms. I find that coupled with the fatigue we as sufferers and to others around us maybe it is not always recognised how much energy we are using up just maintaining basic tasks. Because of this we are unable to carry reserve energy when the battery/body runs out ...so it runs out without warning..hence the crash effect. Sometimes it is possible to plan ahead and take a rest prior to an extra or different activity. Unfortunately the ;'unpredictable' nature means that you can plan and still run out of steam or you might arrange to cut an activity short so that you can still get mind and body home in some shape or form only to find you get back home still feeling good....unpredictable and frustrating...Try not to let it stop you doing things but try to accept when you crash you will have to rest up , but don't feel bad about it because it's nothing you've done or haven't done. Hope this helps

  • BooBoo39 has nailed it on the head! I think we do try so hard to still be "normal" in our day to day that when the petrol runs out we feel absolutely useless!. but it is not only us that face this problem; there our other people who suffer with this condition of up's and downs!

    The first time I was taught about it was when I went to a 3 week Chronic Pain Course (as I have a degenerative spinal problem and the disc are on nerves) and they taught use, was how to PACE ourselves and have regular breaks during our good days and by doing this we would get longer times in feeling better (it is a hard long practice!) and they proved this worked in each individual over the 3 weeks. The changes in some of the people where enormous! We also did simple exercises daily and became much more flexible and capable of doing things.The course taught us how to do breathing techniques, relaxation (mediation) they also had an open afternoon for relatives and people that you live with to understand our problem and to help us maintain a better balance giving us more time in feeling better! which results in better moods, happiness and general being.

    I know that this course is run for people in what is called "chronic pain" but maybe you could still get on a course? The course I did was run by The NHS and my Consultant referred me. I did mine at The Wolfson Neurorehabilitation Centre in Wimbledon and understand that there are a few around the country. Maybe they might be able to guide you to one closer to where you live.

    I still struggle in practising it sometimes as I am a person that must continue to GO go go,,, BUT have learnt when to stop (PACE) or pay the consequences. So I use it for all my ailments including the Vasculitis.

  • I have managed a referal to the Chronic Pain Clinic as well and have an appointment with the Clinical Psychologist to see what service they might be able to offer me. So thanks for the encouragement that this route is profitable. I have CNS Vasculitis and have become increasingly debilitated by pain and fatigue as I come off steroids,

  • Thankyou for your replies, it is so good to know others are finding ways to deal with these problems. I am a person who responds to piictures and the thought of running out of petrol is a good one, if only I could recognise the warning light of nearly empty. I will ask about a course from my dr. Again thanks for taking the time to respond.

  • Very interesting. I have Wegener's and suffer terribly from fatigue. I know a large part of this is caused by the fact that I was used to being 'driven' in my past life. Every project I ever ran had to finish last week! haha Even now, my life is like that. If I decide to do something I go headlong into it and work work work until it's done. I've had all sorts of counselling. I guess it's just down to me! As for Chronic Pain, I too suffer from lower spine problems and have a degenerative disk. I have never considered a Chronic Pain Clinic but will have a word with my GP. I hate taking Tramadol .... leaves me so spaced out!

  • To everyone above!

    I am so pleased to hear that others suffer from similar symptoms and all I can hope for all of you to go on this Chronic Pain Management Course (3 weeks).

    If they give you the option of staying at the hospital / rehab, I would take them up on this, as I feel the people who stayed on my rehab course seemed to benefit more from it? (I do not really like staying with others as I am shy and probably snore!!) We where allowed home for the weekends.

    The other most important thing is when they offer you to have a relative/partner/ friends take this up - as it really shook our group of family and friends, that attended the afternoon session! and finally when discharged and left to go home and practice it -" IT IS HARD!" as at home you work at a different PACE but they would have given you all the tools to practice with and it is then up to you.

    Maybe to help lighten the load write down things that you find difficult in your daily life - DON'T BE SHY ask questions so when you leave you are happy you have asked them everything that may help you in your life, the more you put in from the beginning to the end, I think it will be easier for you when you go home.

  • Sorry it is me again! An interesting link dealing with pain is 'Pain Concern' (whilst waiting for an appointment) as they cover some great areas of what, why, when we have pain and ideas of working with it.

    painconcern.us2.list-manage...

  • Sounds great!

    All we need is a link?

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