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Another nasty crash. How to I pace?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jemima37, Jun 20, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    Sorry for the typo in my title lol. Silly phone.

    So on Friday I had more energy and stupidly I decided to shower, cook a good breakfast for my family, another big lunch and meal from scratch for dinner. I put a load of washing away and as my son was going away for the weekend I had to pack all his clothes for him. By 4pm I sat down and started to feel very sick. Which is my first I've over done it sign. Within 2 hours my thighs jusy above the knees started burning which I feel even when lying down. When walking my legs felt wweak esj but heavy and I felt awful walking. All typical crash symptoms.

    I woke Saturday morning with the same leg symptoms, feeling very sick, weak but heavy arms, dey mouth, exhausted in head and eyes, feeling faint and low blood pressure, feeling exhausted all over my body and just generally ill like how you feel when recovering from a virus whwn you feel sick and weak. 80% of my symoroms arw the body ones and 20% head and eye fatigue. It's always lile this when I crash. When I tried to walk I felt faint and legs felt weak but like lead and I couldn't even stand to wash my hands after using the toilet. Every toilet trip was terrifying.

    That is a typical crash for me and it takes about 48 hours for me to go from a 10/10 in severity to an 8. Now on day 4 it's a 7. Which is my regular daily score. I feel daily weak legged by about 3pm, they go like lead and heavy and I will feel woozy walking. Most evenings my thighs burn after doing 4-5k steps a day. So daily I feel heavy all over and body drained, everything an effort and hard going but as soon as I do any kind of housework a nasty crash happens, I have to be so careful and hubby has had to take over hoovering, mopping etc. It can even hit after any stress. Any upset from my mother who I'm not really in contact with now then I crash badly too. A small trip to the park can also land me in a crash.

    Is what I describe normal in a crash (sorry to post again)? I'm switching to a new gp as mine is leaving next week. He's not diagnosed me bur run evey test and still nor given a diagnosis other than saying I'm depressed lol. He asked me to do a detailed letter explaining my symptoms for a handover to my new gp which I did yesterday. I'm hoping this will lead to a diagnosis because the not knowing has led to alot of fesr of why I daily feel so unwell and having no answers is awful. On crash days I cry so much purely out of fear. I've been ill like this 19 months now and all that was found was an underactive thyroid that is now treated and doing ok yet my symptoms this year have got worse.

    I'm even considering a wheelchair to try and get out and spend time with my family and nor usr my legs so much because I've become too afraid to go out incase I crash and now I'm worried at the end of every day will I crash again. I've 3 children and I can't not cook and tidy up. I rest when they're in school bur mornings and evenings are pretry hectic.

    Julie
     
  2. Mary

    Mary Senior Member

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    Hi @Jemima37 - it sounds a lot like a crash or "post-exertional malaise", your awful symptoms after exertion. One of the big mistakes I used to make was when I had a good day and had energy, I would push as hard as I could, just because I could, but of course I always ended up paying for it the next several days.

    It took quite awhile for me to accept my limitations; experience taught me what I could and could not do. I found I had to stop doing things before I got tired; if I waited until I was tired before I stopped, I'd done too much and would crash badly the next day. I know everything is much harder when you have a family to take care of. This illness is a bitch.

    But in the long run it will be better for your family as well as you if you can keep from overdoing it as much as possible. Don't do all the big meals, cooking everything from scratch. Simplify as much as possible. Get your kids to help. It's good your husband's already helping.

    There are several people on the board who are very glad they got wheelchairs or scooters for going out. Do look into it, it might be a good solution for you - do a post about it here.

    Re your doctor: most doctors know nothing about ME/CFS so I would not count on getting a diagnosis from him or her. I think the best thing you could do would be to educate yourself and your doctor, if they are open to it. Be aware that even if you are diagnosed with ME/CFS, it's very likely your doctor will recommend GET (graded exercise therapy) and cognitive behavioral therapy. As I'm sure you know, GET is the last thing people with ME/cfs should do. It only makes us worse. You might check out this link for resources for educating your doctor: http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/doctor-visit/educating-your-doctor
     
  3. lnester7

    lnester7 Seven

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    My tricks to get out of crash: drink extra electrolyte. I use pedyalyte a liter each day.

    2) Increase the energy supplements: extra d ribose, extra coq10 ( I would take as much as 800mg in a day).....
    3) sleep extra hours ( I would go 12 to 14hat night).
    Baking soda if there's pain ( latic acid like pain). And high PH water ( I buy the ones ready or add alkaline drops)
    4) extra effort on energy pack food ( I have a list that just help me) grapes, cherries, avacado....
    I don't say it wil work on other plp just ideas might find something thAt helps.
     
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  4. Alvin2

    Alvin2 If humans were rational...

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    Wow, this is a month for me!
    You need to stay within your energy envelope to avoid severe crashes, it may take some experimentation to figure out where it is, and within it you may feel fine but experience will tell you more then this is too much.
    This is the tricky part, if it were feel slightly tired stop then its "simple", but if you did what you know you can without crashing and still feel okay to do more but know from experience you shouldn't then its harder to make yourself stop. This is what you have to do though if you want to keep the ME/CFS from getting worse rapidly
     
  5. Jemima37

    Jemima37 Senior Member

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    I know. I was very silly and I do this often. I push myself to my limits then I feel sick and weak and know I will crash. Sometimes I'm lucky and can sleep it mostly off then wake just on a tired day but mostly I crash bad. I do need to stop doing that to myself.

    Thank you for your reply.
    Julie
     
    Mel9, arewenearlythereyet and Alvin2 like this.
  6. Alvin2

    Alvin2 If humans were rational...

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    Its a hard habit to break, and even Dr Davis once said its a cultural phenomenon to push though things, athlete is tired, push through it... :bang-head:
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    My take on this is simply -- it's a learning curve. Over time you will (possibly even without realising) develop coping strategies and ways of doing things more energy efficiently.
    You will with each push and crash have a better sense of where your limit is (tricky as it may fluctuate) and you may learn to be more aware of symptoms that suggest an impending crash and not only learn to stop sooner but also understand better what the crash is going to feel like giving you more incentive to stop (I say this because we naturally want to do what we want to do and sometimes are willing to risk a crash for a temporary moment of doing something). Over time we might still make that call occasionally but there is a very real downside to crashing too often.
     
    Mel9 likes this.
  8. TiredSam

    TiredSam The wise nematode hibernates

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  9. Jemima37

    Jemima37 Senior Member

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    Thank you

    You're right. I am exhausted ever since the weekend crash and it has certainly taught me a lesson but it's also made me very low. I have realised just how limited my life is and how I can't be a normal mum like I was before :-( I am finding this so hard. I am also not officially diagnosed because my GP just runs test after test, making me repeat silly tests if they are 0.1 under like sodium or potassium. HBA1C every 3 months even if normal. It's been draining and not having any answers other than an underactive thyroid is frustrating. That is now in range, treated for a year but I have been told by many, including my GP it wouldn't cause what I experience daily or the crashes.

    My GP told my husband last month he thinks this is all depression and that is just such an insult because yes of course I am depressed as a result of this, who wouldn't be at a young (ish) age. It's beyond frustrating. My GP asked my husband to get ask me to write a handover letter so he can meet with my new GP and discuss my situation with her. Which I have done. I put real detail into it, describing just how ill I feel every single day. It's awful and he has to realise it isn't all as black and white as he thinks.

    Daily I feel exhausted, like today I feel I haven't slept and my eyes sting when i close them. My back is achy. I feel dizzy all the time recently but not like the room is spinning but like if I move my head suddenly or bend down to put things in the washing machine, or even if I open a door it knocks my balance off in my head for a few seconds. Constantly I feel my head is bouncy or swimmy as I walk. My whole body feels weak but heavy like it's made of lead. The weak thighs hit later in the day after activity and burn sometimes. I feel sick often and just feel daily like I have a heavy drained body to drag around. Doing any chore, even just stood cooking I feel heavy and ill all over and have to sit down. I spend most of my days horizontal. I aim for 3000 steps a day on my fitbit which I manage but on crash days I am lucky to hit 1000. This is daily and I am fed up, I am getting worse too the last few months. Last year it wasn't as severe as this but it was bad enough. I managed a 4 day holiday, i was tired but not crashing as bad as I do now or feeling as ill as I do now every day. I can't help but worry it's something more sinister the longer this has gone on.

    I have to repeat my full blood count Monday and I am terrified. In March my lymphocyte count had gone slightly over range at 3.98, shouldn't be over 3.65. My neutrophil count was low at 1.6 and the range was 2-7. April I had to repeat it and the lymphocytes had gone up again to 4.45, and thankfully my neutrophils had risen to 1.8. My GP referred me to a haemotologist and I have to repeat them and have the specialist check the blood. It's terrified me I have blood cancer or something. I am dreading the results being even worse 2 months on.

    Sorry for offloading. Thank you for your kind reply.

    Julie
     
    Mel9 likes this.
  10. Jemima37

    Jemima37 Senior Member

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    Thank you. I shall try some of those
     
  11. Jemima37

    Jemima37 Senior Member

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    Thank you for your kind reply.

    I am sure a diagnosis wouldn't change anything at all but my anxiety is so high because everytime I crash I am terrified what it is :-(

    I am finding this so hard. I am also not officially diagnosed because my GP just runs test after test, making me repeat silly tests if they are 0.1 under like sodium or potassium. HBA1C every 3 months even if normal. It's been draining and not having any answers other than an underactive thyroid is frustrating. That is now in range, treated for a year but I have been told by many, including my GP it wouldn't cause what I experience daily or the crashes.

    My GP told my husband last month he thinks this is all depression and that is just such an insult because yes of course I am depressed as a result of this, who wouldn't be at a young (ish) age. It's beyond frustrating. My GP asked my husband to get ask me to write a handover letter so he can meet with my new GP and discuss my situation with her. Which I have done. I put real detail into it, describing just how ill I feel every single day. It's awful and he has to realise it isn't all as black and white as he thinks.

    Daily I feel exhausted, like today I feel I haven't slept and my eyes sting when i close them. My back is achy. I feel dizzy all the time recently but not like the room is spinning but like if I move my head suddenly or bend down to put things in the washing machine, or even if I open a door it knocks my balance off in my head for a few seconds. Constantly I feel my head is bouncy or swimmy as I walk. My whole body feels weak but heavy like it's made of lead. The weak thighs hit later in the day after activity and burn sometimes. I feel sick often and just feel daily like I have a heavy drained body to drag around. Doing any chore, even just stood cooking I feel heavy and ill all over and have to sit down. I spend most of my days horizontal. I aim for 3000 steps a day on my fitbit which I manage but on crash days I am lucky to hit 1000. This is daily and I am fed up, I am getting worse too the last few months. Last year it wasn't as severe as this but it was bad enough. I managed a 4 day holiday, i was tired but not crashing as bad as I do now or feeling as ill as I do now every day. I can't help but worry it's something more sinister the longer this has gone on.

    I have to repeat my full blood count Monday and I am terrified. In March my lymphocyte count had gone slightly over range at 3.98, shouldn't be over 3.65. My neutrophil count was low at 1.6 and the range was 2-7. April I had to repeat it and the lymphocytes had gone up again to 4.45, and thankfully my neutrophils had risen to 1.8. My GP referred me to a haemotologist and I have to repeat them and have the specialist check the blood. It's terrified me I have blood cancer or something. I am dreading the results being even worse 2 months on.

    Sorry for offloading. Thank you for your kind reply.

    Julie
     
  12. Alvin2

    Alvin2 If humans were rational...

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    I don't know what a handover letter is but do you really want your current GP telling the new one your crazy and don't take anything you say seriously and perhaps behind your back saying do not believe her if she says she has ME/CFS?
    Also don't try for 3000 steps a day, if you really have ME/CFS your only going to make your condition deteriorate rapidly. You need to conserve your energy and only use it where necessary and any extra to try to have a life.
     
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  13. Mary

    Mary Senior Member

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    @Jemima37 - your symptoms sound an awful lot like ME/CFS - and if you do have ME/CFS, pushing yourself when you don't have the energy will make you worse overall. So it's not surprising that you feel worse than last year.

    I recommend you educate yourself as much as possible about ME/CFS because the vast majority of doctors will be of no help and basically will tell you it's all in your head, as your current one seems to be doing, I would ask others in the UK what doctors they are seeing. The situation is a little better in the U.S., but almost all GPs still know nothing about this illness and act like it's all in your head. I've had to do my own research and read on this board what others are doing in order to make any headway, and not rely on doctors.
     
    Mel9 likes this.

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