I'm on day 37 with still a higher dosage of Prednisone for suspected GCA. (40 mg)
It dawns on me what an endless and deeply life changing procedure this is.
I like you to help me to get out of this state of inactivity and lazyness. My nights are defined by a period of sleep from around 10 pm till 2.30/3.00 am. I'm awake till around 5.30 am and have another hour of sleep, if I'm lucky. After that I'm crushed. No energy left for anything, but laying on the sofa....The only thing I can bring myself doing is cooking. I'm not depressed, my spirit is good, but this lack of physical strength really gets to me.
How did you deal with your fatique and what did you do?
Thank you again for your wonderful support, Monika
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Akino
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Hi Monika, for a start you are not lazy you are sick.So this is about giving yourself permission to rest and heal and no guilt tripping. I think you are amazing for cooking in the midst of all this, I have retired from the kitchen,fortunately my husband is an amazing cook. Whenever I can, I nap in the afternoon. I take 10 mgs of Amitriptyline one hour before bedtime which helps me to sleep. I find that I sleep better for a gentle walk in the fresh air. I have taught myself not to stress about things I can't do at the moment. I clean my house etc. in tiny stages. I read a lot, watch films and even paint and craft a bit, inspired by planning activities for the day I care for my 2 year old grandson ( my biggest indulgence is always being willing to have him even if the next day is spent in bed). The very young are energy givers and pain relievers I find. If some sort of event is planned I rest even more before hand and afterwards. I have learned to say no to things except my little Theo. I've never been on as high a dose as you and my diagnosis is PMR and I worry about GCA. My busy life has slowed right down, one benefit is noticing things like trees and birdsong in a much deeper way. I am cheered by the evenings getting lighter and shoots showing in the earth. I am mindfully cultivating patience, this thing will burn out eventually.
I hope this helps, I went through a pointless angry stage before reaching this plateau. Hey, it could be worse!
Thank you so much. I know you're right and admire you for taking care of Theo and doing things. That's wonderful. The treatment just takes so very long, for ever it seems. BUT you're right, it could be worse. And I agree, I have a deeper sense of life as well. Don't worry too much about GCA, it doesn't help you now and you can deal with it when, or if you have to. Thanks a lot!!! I will think about your words when needed, Monika
Amitriptyline is tricyclic antidepressant but in low doses is given for pain; to help relax the muscles & it does aid sleep, (the therapeutic dose as an antidepressant is much higher)
I was prescribed it by a pain management specialist but never started taking it until a Doctor I worked with fully explained the benefits. I had huge issues with a torn muscle in my shoulder which took a couple of years to recover from.
And it does make you have a relaxed sleep, of which I was in desperate need of!
Yes it is life changing and it is in fact a great opportunity to change the way you live your life. It is very easy to feel you would like to carry on life as you have done in the past, however this is not really possible. This is a chance to take things easier but to start doing things you have never done before.
Piglette, I guess, I have to figure out what that could be and how it could be. And I will be down one day with the dosage and it will be different.
I was always so active, happy with my life style. My husband, house, garden, cooking, sewing, practicing piano (beginner), sport, seeing friends etc. Nothing like it right now. Really, it sucks!
Hello Monika
So sorry to hear how you are feeling; l don't think your sleep pattern is helping. A lot of us get a buzz from the steroids that give us a false energy & disturbed or inability to sleep.
What time do you take your steroids?
Try going to bed an hour later, read a book if you wake in the night if you can't get back to sleep, the wee small hours are the worst!
Try to make a small plan each day, or alternate days then you can rest the following day; nothing over taxing, meet a friend for a coffee or book to have your hair done, just something that makes you get out, aim for early afternoon then you have plenty of time to get ready.
The fatigue is so difficult to deal with, one thing we used to do was go to a Garden Centre, have a bit of a walk round, use one of the small trolleys to put your bag in, after a bit of walk, stop for coffee then if your up to it, walk a little further. The trolley helps & you look no different from anyone else & if you get hot you can put you coat in it too!
It's baby steps really, then if you've been out in the day you may break the cycle of poor sleeping.
I take my pills around 7 am each day after having something in my stomach. Today I'm going to clean out our bathroom. We'll have a renovation starting in a week and I'll start today to make it in little steps. It's so wise to accept these massive changes, but the physical feeling, how my body feels is such a different story.
Last night I felt almost like my old self and had energy, but it was time to settle down. How weird is that.
We sunshine today. Makes the day better. Thank you for your kind words. Have a great day!
Being an inflammatory condition, have you taken steps to reduce pro-inflammatory elements in your diet? I agree with what's been said about the need for rest etc, but I also found it helpful to try and do things for myself which might help. Oily fish is good, NO wheat or gluten, omega 3 supplements,good fats (grass fed butter and coconut oil for cooking), reduce sugar, etc. I found having a lie down every afternoon was really helpful, not for sleep but for rest, and then going to bed early. Steroids in the morning.
yes, your're so right. I started taking a different product for Vitamine D and also Fish Oil yesterday. These products are imported from Norway. The Fish Oil is a fluid, Vitamin comes in drops, also a fluid. I also bake spelt bread now and try to eat more fatty meat. It's still too early to say if it makes a difference, but I'm working on it.
My tapering down regiment is: reduce from 50 mg to 45 mg for two weeks, reduce from 45 mg to 40 mg for two weeks. The second week of the tapering down to 40 mg just started. I don't have any further instructions beyond that, but I will follow the advice given in this forum if I don't get any from my reumi. I will try to do thing for myself today. Maybe go for a walk around my neighborhood, sun is shining. Thank you for you time!
If you could step out in the fresh air for a stroll for maybe 10-15 minutes, that might help. It helps me a lot. Good advice from Hilary about diet too. Life will not always be this way. Spring is coming! The garden is waking up, birds are happy in song. To sit and enjoy is a good thing! Sending you a hug.
My nights were just the same as yours on the higher doses of pred and when the PMR was in its early stages - hot sweats too. After that last hour of sleep, I usually stay in bed resting, even though awake and might not get up until 9am. That way, I can get through the morning better. You are not lazy - you are tired and unwell! It will gradually get easier, but as everyone says, we have to learn to pace ourselves. I too do the cooking, as my husband still works. (Lucky Sheffield Jane!) I can get out in the car to do the food shopping, but the dust is accumulating in the house! I try to walk each day, but sometimes fail. As the weather improves, I will make a better effort - try just 15 minutes at first - 7 minutes from the door and 7 minutes back, so never far from home. Some days I can do 30 minutes. I still attend a weekly Pilates class that I started 8 years ago, but I have to listen to my body and adjust some of the moves.
I agree with you how good it is to share our feelings on this forum.
I'm glad you are doing things and that is a good example to try myself. It is important, as I learn now, not to be too ambitious and appreciate the small steps even more. When I have answered all your comments I'll go for a walk!!!!!!!
Thank you for your help. This forum is like good friends I can talk to. My husband is a very good listener, but I'm glad I've found you all and can go a littler deeper, or more open with my thoughts.
Your story could be mine... went up to 60 mg for GCA 17 months ago and felt like the wind was taken out of me...I have a recumbent bike (I got when I had my knees replaced) and moved it to my bathroom in front of the TV in order to MAKE myself get on it... walking a short distance zapped me and if I slept for 4 hours I was very lucky. I gained 30 lbs and was so disgusted with myself that something had to give.
I then promised myself after New Year that something had to change and that had to be me.... farted around with ideas and no action until one day I knew the time had come. I got on the bike found a good movie to watch and pedaled away.. before I knew it I had done 5 miles !!! Then my diet started a week after that and things have been much better... I can pedal up to 10 miles at a time on level 5 which is pretty good (I sometimes do it twice a day) and I cut out sugar butter and bread and have lost 15 lbs and I am feeling much better about myself. I used to be an avid tennis player and very very active until the knee replacements one 15 years ago and another 8 years ago and was still very active around the house.. walking etc... then the PMR zapped me totally... I also have RA and I have an awesome Rheumy... we tried Methotrexate but it made me sick after a few weeks... she then put me on Orencia Infusions which seem to be helping a lot... it has enabled me to get the prednisone down to 5 mg which is awesome. The moon face has gone no more hair shedding and I feel alive again 90% of the time... I am going to keep pushing to better myself but it is always a struggle... You will eventually kick into another mode and it will be easier. It took me forever to get into that "won't be beaten by this" mode.
how amazing you are. Congrats! It takes a lot of willpower and admire you.
I think I don't have any excuses anymore. You all struggle, but you all keep fighting for quality in life. And I should do the same. And I will. Thank,you!!
You will... the time has to be right for you... like anything we do the right timing makes it easier. You will know when you reach that point if you keep thinking about it.
As others have said - you aren't lazy, you are ill. It is invisible but GCA is a serious illness in its own right and you need to rest and allow your body to heal. That doesn't have to mean doing nothing - and many people find that does actually contribute to the lethargy. You have to learn to pace and manage your resources. This is a link to a post about the first:
A gentle walk out in the fresh air will combat the lethargy - and if the weather is rubbish, lots of people find a large shopping mall makes a decent substitute (don't get it myself but hey-ho!). When you are so tired, the thought of a long walk will probably put you off altogether - so find somewhere you can do a short circular stroll, or go out and go a short distance, turn round and come home. It is different scenery coming back! As time goes on you will feel well enough to do a few minutes extra - or not. Just be careful not to end up somewhere you can't bail out when it is all too much and get the bus home or call a taxi if it really is that bad!
When you can't sleep - have you somewhere to go and read, meditate, find a hobby that won't disturb other people? It doesn't help to lie in bed awake worrying about it all and doing that may make the sleeplessness worse because you learn to associate bed and not sleeping. Google sleep hygiene to find things to avoid or do that help sleep. And talk to your doctor about it because there are things that will help - but try not to get dependent on them.
I know the feeling if walking in my neighborhood and my legs feel like rubber and are all shaky and weak. I lay in bed and enjoy the warmth, I get up and read, but I can't bring myself doing something else. I guess, I'm still a novice and the learning curve is pretty steep.
You're all so very helpful and I truly appreciate it.
Hi Monika, I believe how we label ourselves makes a big difference. You're making it harder on yourself to heal if you look at yourself as "inactive and lazy". You are not, you need to allow your body to heal and it's telling you it needs this time to slow down. It's an awful disease and many don't even believe we are sick, we look so normal on the outside. I find walking outside helped but start slow, a few minutes a day and work up to however long your body allows. Fresh air will be good for you. Don't push it, just listen to your body. I had the same slow feeling all last summer, it felt like everything was in slow motion just passing me by and I had the same sleep pattern as you but I still woke up refreshed. Some people need more sleep than others and we are all so different. Listen to your body and go with the flow. Healing hugs and I hope you feel better soon.
Kulina, you put that very well. It's hard enough trying to get other people to understand we are ill because we look okay, and once we aren't hobbling around in pain we don't behave as though we are ill. But we do need to treat ourselves gently, as though we are recovering from a bad flu or even a broken limb, because we ARE in recovery and even if PMR/GCA isn't life-threatening it is serious, and the treatment is serious and we have to respect that. It's not like getting over a cold and everything is back to normal. I have to confess, though, that learning to accept the "new normal" isn't easy. There is this fine balance between going whole hog with the invalid bit, or, just as bad, being in total denial. In some ways it's been an opportunity for me: a reason to not have to cut the grass, etc., a chance to read a book or pursue a hobby without feeling guilty.....
Thank you HeronNS! Believe me I've overdone it and it took trial and error to figure the "new normal" and we're so eager to go back to our old lives... I'm lucky to have a very supportive husband who would constantly remind me not to overdo it. He's such a mother hen I remember last summer coming back from PT and icing my knees while sitting in the sun. I lost weight from my new diet and got a wonderful tan, everyone thought I looked great but very few people knew the agonizing pain I was in. Even so, I have to admit, this disease has made me a better person, I can slow down and smell the roses and count my blessing every day because there are worse disease out there. I feel like we will beat this but I also feel that the more we fight and stress over it, the more it will come back. Just my idea of going with the flow.
I come to understand that accepting the new circumstances is the hardest part. And to adjust to it is even harder because one never knows what the next day will bring.
Yesterday I was crying out of sheer desperation about how I felt and today I was good, almost the old me.
I take you healing hugs and wrap them around me. And I give you some from me. Thank you Kulina! Big hug, Monika
Thank you Monika! Yes, getting used to the new normal is tough but you must because there IS light at the end of the tunnel. I believe the more we fight it the more it comes back. Keep in touch, hugs, Garine
I have got better at getting back to sleep between times when I wake up, still often 5 times a night. In the beginning, 11 months ago I could not sleep after three and found the best thing was just to get up and do things. I was known to plant hanging baskets up at 3 am by the security light! Wrote diary, letters, emails etc. found it better not to fight it. At least there is hope for us at the end of the tunnel as most people get the steroids down and eventually go into remission. Very best wishes to you. It is certainly life changing
I did exactly the same last night. Stayed in bed although just resting, but I must have fallen asleep in cycles. I got out of bed past 6 am and had such good day. No buzzing, or only a little, no weakness, or only a little. Still blurred vision come and go, but I felt energetic. And I walked around my neighborhood and baked a bread. I'll try to stay in bed again tonight. I know it can be different, but I'll try. Wish you also well and better. Good Night!
Akino I stumbled on this thread. It’s as relevant now as it was two years ago. All the replies give priceless help. I wonder where you are now in your journey and the others who posted here. Hope you are ok
I’m also desperately hoping that. If this thread appears as new, it doesn’t upset SJ because I would hate myself if I do that xxxxx
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I remember last summer coming back from PT and icing my knees while sitting in the sun. I lost weight from my new diet and got a wonderful tan, everyone thought I looked great but very few people knew the agonizing pain I was in. Even so, I have to admit, this disease has made me a better person, I can slow down and smell the roses and count my blessing every day because there are worse disease out there. I feel like we will beat this but I also feel that the more we fight and stress over it, the more it will come back. Just my idea of going with the flow.
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