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Do you ever crash out of the blue?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jemima37, Jul 1, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    I daily feel exhausted and weak. I find each day a 7-8/10 in severity. My symptoms are fatigue, I struggle to wake each morning despite 7 hours sleep, weak thighs and just s general fatigue all over my body. I have to pace and if I do too much housework or go out I usually crash the following day or that evening I get symptoms I'm about to crash.

    2 weekends ago I crashed and it came on after alot of housework. Yet this crash today has come on after me beinf careful pacing all week but I have felt very doen this week and quite stressed as I've lost of tests ahead and I'm anxious about them. I usually crash after exertion but in the last if has been after alot of anxiety or stress. Is this normal?

    I woke this morning and could not open my eyes. I felt so sedated all morning like I'd been drugged. I'm like it daily recently bur it eases by lunch. Today it didn't and led to a crash. I feel weak legged, whole body weak, feel faint yet bp is normal. walking around I always feel like I'm dropping through the floor or like a fainting feeling but I don't faint. It just feels lile my body cannot stand up and when I do I feel I'm sinking. That's my worst symptom in a crash and I have to rest. I never make it downstairs because of it on a crash day. If I rest I can feel better. I do have nausea at times though in a crash but the worst is on walking or if I sit upright I can feel very woozy in my head.

    It's worried me today because I've paced all week so didn't expect to crash. It's also very odd I seem to crash mostly at weekends. I feel grim daily but 95% of my crashes have always been a weekend. Thank goodness as my hubby is home. I try to carry on during feeling like this but that faint sinking, and feeling I can't stand stops me.

    Is it normal to crash after any upset or stress as much as it is exertion? Can anyone relate?

    Thank you and sorry to post asking questions again.
    Julie

    Ps sorry my title has a typo error (Fixed. You can do it yourself with Thread Tools-->Edit)
     
    Last edited by a moderator: Jul 1, 2017
  2. bspg

    bspg Plant Queen

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    I'm sorry you're feeling so badly @Jemima37.

    Yes, crashing after stress is very common. This goes for any kind of stress: mental, emotional, or physical. Stress is very taxing on the body, but even more so for PWME.

    You might be more stressed than you realize or you
    might even have an infection or environmental factor that's putting stress on your body.

    Have you been evaluated by a doctor recently? Are you taking any vitamins or supplements?
     
  3. Mrs Sowester

    Mrs Sowester Senior Member

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    Yes, stress knocks me out as quickly as activity.
    Also only 7 hours sleep sounds like not enough to me, especially if it is disturbed or poor quality. I need about 9 1/2 hours or I can't move or open my eyes in the morning.
     
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  4. Jemima37

    Jemima37 Senior Member

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    This has been my number 1 crash symptom for 19 months. My gp won't officially diagnose cfs either as he believes it's not a true diagnosis so keeps digging for something else keeping me anxious and worryinf what's wrong with me.

    I last had bloods a couple of mo the ago and due more soon. I'm forever doing tests. I take vitamin c, b12 and vitamin d every day. I have an underactive thyroid that I got diagnosed last year and it's now in range.

    Thank You for your reply.
    Julie
     
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  5. Jemima37

    Jemima37 Senior Member

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    Yes I do need more sleep. I find it hard to sleep before 11pm with 3 teens in the house. I'm awake before 7 every day too.
     
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  6. hellytheelephant

    hellytheelephant Senior Member

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    Hi @Jemima37

    Yes, I can totally relate!

    Maybe you have more company at the weekend? Chat more? Watch more tv.....or are always doing housework. Do you keep a simple diary every day? I have found that really helpful in seeing the connections between activites/stress and crashes.

    Stress is probably the number one reason for my crashes, which is frustrating when you have been pacing carefully.

    I have found that keeping yourself going when your body is telling you to stop just leads to longer and worse crashes.
     
  7. Jemima37

    Jemima37 Senior Member

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    It's funny I seem to crash on a Saturday morning or Friday night before I've had more company. Quite odd lol.

    That feelinf I get thsts my number 1 crash symptom is scary. It feels like I've another Julie inside me that kind of feels she's sunk to the floor and fainted every time I stand up or walk around. Yet I haven't fainted. It's awful and I feel it so strong plus the weakness. It stops me functioning every crash and I have to lie in bed.

    I suffer from stress and do have ptsd/anxiety. My corrisol levels are also raised on my recent test.

    Thank you for your help.
    Julie
     
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  8. bspg

    bspg Plant Queen

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    @Jemima37 I'm glad you're seeing a GP. It's a bummer they don't believe CFS is a real illness. Have you ever been evaluated for POTS or othostatic intolerance? I wonder if that could be causing your sinking to the floor feeling.
     
  9. Jemima37

    Jemima37 Senior Member

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    I have wondered if it could be pots type crashes if that's even a thing? I've never been checked for it no.
     
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  10. Jessie 107

    Jessie 107

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    That's one of the things about M. E. Sometimes even though we pace, we can still crash, and symptoms fluctuate.
    I am pacing but I still crash every week and I will be quite bad for about three days. I have been trying to cut down on what I am doing (which is not alot) but it hard to just do absolutely nothing, this illness is so very frustrating for sure.
     
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  11. Jemima37

    Jemima37 Senior Member

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    It's so frustrating isn't it. I feel so ill when I crash hubby has to take over. Thank goodness it's a weekend. Having chikdren it's really hard because even though I say I paced this week I still cooked and got them ready for school each day and tidied up at night after them. I rest when threyre in school and I did get them 2 take away this week to essse the burden lol.
     
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  12. taniaaust1

    taniaaust1 Senior Member

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    looking at your post, I dont think are crashing for no reason at all. Added stress will wear one down and cause a need to be resting more. From what I can see, you are pushing yourself too much during the week, getting up to get kids ready for school etc etc which then acculminates in a crash by the weekend. So u are in a push/crash weekly cycle.

    7hrs sleep is okay for a healthy person but those with ME/CFS need more sleep (ones body does a lot of its healing when someone is asleep). I personally need 9hrs (or more if im worst). Before I was sick I was good on 6-7 hrs.

    I suggest that u do need to change some things or otherwise u may permanently find yourself at a worst baseline, from your post I had that isnt what has just happened. ont believe u were continue being okay with pushing yourself and not listening to your bodies needs (forcing ones body up before it is ready to be getting up is a huge strain on it each time, whether u later come good or not). Learn to listen to what your body needs and go with your body.

    . eg get the kids doing some of the meals doing the week days (I suggest to give each one a night of the week in which its their cooking night, its good for their learning too and they will get the hang of doing family meals after a while).. and get more sleep. My children were expected to be silently doing things in their rooms if I needed more sleep. The sleep thing may be essential to your health.

    As you are in the UK your doctor may be in fact trying to help u by not giving u a ME/CFS diagnoses, many there are treated badly after being given that diagnoses. U may need to seek out a good ME/CFS specialist which others with symptoms the same as yours recommend eg Dr Sarah Myhill.

    As long as your doctor isnt doing exactly the same tests multiple times over, testing is useful. A tilt table test may be useful and now would be a good time to see if u can be refered for that. You could also do poor mans testing for POTS at home to see if you have this causing your symptoms. (i had to diagnose myself and then find a doctor to diagnose me).

    Much of what u said fits POTS (and that can make u feel crap in morning when u first wake up till u hydrate better. Many POTS patients need to prepare their bodies for getting up before they get up
     
    Last edited: Jul 1, 2017
  13. Jemima37

    Jemima37 Senior Member

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    Thank you so much Tania

    I am waking daily feeling rubbish, there's never a day I wake feeling well. I say a crash is a 10/10 in severity but my regular days are a 7 some times an 8. So I'm never far away from a crash. Every day I wake feeling weak in my legs from the moment I stand, a weak lethargic feeling all through my body. Most mornings I force myself into the shower on waking before the children are up bur on bad days I wait until evening. Then there are some days I also wake with the sedated drugged up head feelinf recently on top of the weak drained body.

    I then get the kids fed and up for school. I've stopped driving them as it was too much and they all walk, they re all high school age. I did feel guilty but I don't anymore. Lol! By not driving them though I rarely get out. I've not been out for 3 weeks!! Not even for a drive. I've sat in the garden the odd day but recently even a drive as a passenger can cause me to crash. Being in this situation the last 19 months I admit has led to bad agoraphobia and social anxiety. It's awful.

    My chikdren cooking is a fab idea. I also thought maybe sandwich night would be food. I could get good fillings in and they can all make their own sandwiches and have some fruit or crisps or something on the side.

    I am doing way too much but i feel I can't shorten my lost any further. Hubby Hoover's the house and mops 3x a week for me. He loads the dishwasher at night and unloads it before work the next day. Be walks the dogs. I already feel such a useless wife and mum and I cry most days. It's made me very depressed this whole situation. In a day I wake at 7, shower, make breakfast, sit and eat my food. Then see the children off, tidy the kitchen, put a wash in the machine, go uosators and make the needs and spray and wipe the toilet and sink. I then sit and rest till lunch. Make lunch and then rest fill 3pm. I then cook their meals and tidy up the plate and kitchen. I usually then get myself in my pjs and relax for the night. I find all of that very difficult. My fitbit says I do about 3-4k steps a day.

    My gp last yesr did 2 full blood counts, b12, folate,ferritin, hba1c, glucose, crp, glandular fever, nuclear antibodies, cholesterol, thyroid, liver and Kidney function tests..... there may have been more. All ok other than once my glucose was a little high so he has made an do 2 hba1cs sinxe and both are fine at 34. Sodium in November came back a little low so we repeated it a week later and it was completely fine yet eveeytime we speak he makes me repeat it again and it's fine but he panics and it's the one tests he makes me do over and over plus the hba1c. Yet he never ever has told me what's wrong with me. He said the November tests would be definitive bur will no diagnosis. He visit me a fair few times laat year and would see me in a crash and blame.depression or mood. Once he told my hubby it was a virus. I had to make him see my thyroid was out of range and eventually he treated it. It's now in range so he dismisses it could cause any issues now I'm on thyroxine.

    My go rang me in January 10 weeks after the last full sweep of bloods and he said he was noe worried it wasn't just mood and he wanted to run all the same bloods he had 10 weeks earlier. I refused and said they were fine and all of this was causing me anxoety and id developed a real phobia of blood tests by this point. He made me do another full blood count etc and the fbc came back with my lymphocytes slightly our of range and neutrophils slightly low. He panicked me and referred me to a haemotologist. The haemotologist wrote back and said he just wanted to wait 10 weeks and get my go to repeat it and send it to him so he could look at it himself. I stupidly googled my 2 out of range and saw leaukemia and cancer raise lymphocytes which terrified me. At the time of the test id had an awful cystic acne outbreak all over my chin and had raised glands. My gp dismissed that as a cause.

    My gp left kast week and I've been handed over to a new female gp..i am hoping she will diagnose me as the last go said he didn't want to as cfs is just a diagnosis of exclusion but 3 times kaay year he admitted my pattern of crashing did match cfs burbhe doesn't lile to diagnose it as it's not in his eyes a true illness. He even told my husband recently he thinks I'm just depressed but my husband disagreed and told him I'm only depressed due to this ill health, the anxiety of never being diagnosed and the agoraphobia ansld social anxiety it's causes.

    I have cut the world our this laat 6 months. Refused any gp visits and would only talk over the phone.. My gp has raised my anxiety so much and I just went into hiding from him I guess but now with this haemotologist thing hanging over me I'm terrified if I have cancer is it my fault for cutting the world out this yesr so far. My husband says not as I saw my go so many times last year and did all the tests he wanted.

    I feel craahes rule my life. Theyve also added to my fesr of seeing peoole becayse laat year everytime i had visitors i'd crash for days so I've refused visitors this yesr so far. I'm scared to even go to the park with my children as that usually results in a crash. If I have blood tests to do I am scared to go out for a week before incase I crash and can't do them. The crashes rule my life. Last year I did things anyway and I even still did our weeks caravan holiday but this yesr it's all worse and we had to cancel our holiday we should have been going on yesterday. I feel I've let all my family down but this yesr so far thing are worse I used to have good days last year now every day is hard. I used to crash maybe once a month or 6 weeks. And now I crash twice a month.

    All of this has led to so much stress and my corrisol levels are high. I was attacked by my brother 5 years ago and my mother and sisters resented me for never forgiving him and I was pushed out of the family for that reason. My mother has causes me so much pain rejecting me. She is aware I'm ill and I even hot the guts to ask her for support last year and she refused. She would visit once every 2 months to see the kids, see me ill but offer no support. It led to severe rejection and re triggered my ptsd. So that stress has been veey upsetting too and it's hard having no support.

    I apologise this got so long. I am really sorry. It's all been bottled up inside me and I'm a worried little mess.

    Thank you for your kind reply.
    Julie

    Ps yes I am in the UK.
     
  14. Valentijn

    Valentijn Senior Member

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    It sounds like you're in a constant state of over-exertion, and that will just make you sicker. Your mornings are way too active. Showers are the ME equivalent of running a marathon. Cut those back to twice a week, and it will probably make a big difference. Using a shower chair can help a lot as well. And ... toilets and sinks do not need daily cleaning :p

    But instead of a morning rush where you do a lot, it might help to plan and pace things, so you're only active 10-15 minutes every hour. Then you can spend the rest of the hour resting, maybe doing something non-physical.

    I don't think a step-counter is of any use for pacing. A heart rate monitor, on the other hand, can show you when you need to rest, or what an activity is too strenuous and needs to be approached differently or dropped entirely.
     
  15. taniaaust1

    taniaaust1 Senior Member

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    I agree with Valentijn that it sounds like you are in constant state of over-exertion, your morning routine is a hugely busy one for someone with ME. Most of us rest after showering (I have POTS so I use shower chairs). I only shower on days where I arent going to be doing anything else. The fact u cant have visitors etc even if for a short time (or did u just try to have visitor for long periods? eg try having visitors for only 2 hrs instead of half a day etc), shows you arent building up any energy reserves to have anything spare.

    Break up your activities more as Valentinjn suggests and "rest" in between them.

    Be aware that u may be doing things that could be affecting your health negatively as far as ME goes and the issues many of us have eg all the cleaning u are doing, daily cleaning toilets, sinks etc .. are you using chemical cleaners? When hubby is mopping the floor 3 times a week, is it chemical cleaners? You are more at risk to with this illlness of developing multiple chemical sensitivity (MCS) so take care

    cause of that I suggest a 2 hr glucose tollerance test with the insulin results included (so not just a standard 2hr GTT). Hyperinsulinemia may be more common in ME/CFS and will agitate the ME more. Dr Sarah Myhill a UK ME specialist tends to think it is

    There is certain antibiotic used to treat that which is very bad for ME and has actually some into getting ME/CFS. So another thing to take care of.

    that is a common ME/CFS finding, u are probably needlessly worrying re leukemia. There are quite a few common abnormalities often found in ME.

    children can often really enjoy making their own pizzas or tacos. Tacos using taco shells are very easy to make .... just have them grate cheese (or buy grated cheese and freeze it and just use when needed), they can cook some mince and onion (herbs, spices, salt)...to go in it and just have them then put some salad in it. 10mins and they have their meal done
     
    Last edited: Jul 2, 2017
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  16. Jemima37

    Jemima37 Senior Member

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    Thanks Tania

    My gp did 2 hba1cs sinxe and been fine so hopefully that one off glucose was nothing. He's not asked to re test and I've no symptoms of diabetes such as the thirst or urinating frequently. He's not requested any other tests sinxe the hba1cs.

    Is the raised lymphocytes and slightly low neutrophils a common occurrence with cfs? My neutrophils were 1.79 range was 2-7. The lymphocytes were 4.45 and range was at top end 3.65. My white cells count was normal at 6.

    I don't have visitors anymore. Last year I did and only my mother, she would visit up to 5 hours and id crash and burn for days after. I think the anxiety if seeing her and the pain it causes me didn't help. I haven't had any visitors all of this yesr so far as I can't face it or the crashes.

    The showers I do every day, I felt guilty yesterday I had to miss it 1 day. I don't know why bur I pressure myself and think I must be clean daily. I also have awful greats hair thst has to be washed daily even dry shampoo doesn't rescue it. I worry a lot that I look a mess so I try to keep my hair and hygiene up. But I admit I dread it every day. It takes so much energy. Even though I sit in the bath to shower.

    My.go blamed depression even recently and I have pushed myself to do so much to try and prove to myself he's right but it's resulted in a huge crash since April. I did 2 weeks of going out, cooking, baking, showering, park with hubby and kids and drives. Wham huge crash after doing it for 2 weeks. I've felt ill ever since. And I've had 3 big crashes in the last 2 months.

    Oh the cleaners yes they are chemical. I bought chemical free toilet cleaner, handwashes, washing up liquid, washing liquid for our clothes, shower gel and shampoo i use chemical free. I will definitely get chemical free for the tiles and sprays for kitchen.

    The kast 2 months I've been slowly weaning off my anti depressant Mirtazapine. I've been on 15mg 3.5 years after The attack. It adds to fatigue as it's sedstinf so I wanted off it. It also doesjt help anything bur my sleep anymore and it's caused 35lb weight gain which was much needed as I was 84lbs before that all my adult life. I'm now about 120lbs and at 5ft tall I feel too big. I'm trying to do slimming world to lose some weight too. But that is as and when I've energy. Crash days I just eat what I need to eat.

    Great idea about kids doing dinner. I shall speak to them about that. Thank you.

    Julie
     
  17. Jemima37

    Jemima37 Senior Member

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    Thank you.

    It is alot I know. I just don't know how to do less as I feel I've put enough on my husband.. He works full time and already comes home and helps do jobs I can't. We've also alot of jobs coming up around the house as we've some home improvements that have to be done so he needs to be doing some.jobs aswell as work men in.

    I do find pacing hard but I've already limited what I do.

    Thank you.
     
  18. Mrs Sowester

    Mrs Sowester Senior Member

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    Jemima, you are doing waaay too much!
    You're not going to stop crashing if you don't ease up a lot. I'm going to tell you what I tell myself:
    I understand liking things clean and tidy (I really do), but who in your family cares apart from you? Floors don't need mopping 3 times a week, seriously, buy a Roomba! Do your kids and husband even notice if the floors are grubby? Do they even respect the cleaning you do? If you can afford it, get a cleaner or if you can't, give your kids a cleaning rota, it will be good for them.
    The same goes for you and showering, you don't need to shower every day, it's not good for your skin and hair - and who is judging you apart from you? You're not having visitors. Try showering ever other day and use a flannel between times and dry shampoo if you are going out.
    You are making yourself worse by trying to be the perfect wife and mother - it's just not sustainable with ME and no one will thank you for putting appearances ahead of your health.
    Rest now, screw diets and shiny floors and groomed hair! Seriously, if you carry on pushing like you are now you are only going to get worse and I promise you that is not something your kids will like.
    Sorry to be so blunt, but I wish someone had been this straight with me 7 years ago.
     
  19. Valentijn

    Valentijn Senior Member

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    Hair will get used to not being washed as often. My limit is about 6 days, then the oil in it starts smelling a bit rancid. I try to shower every 5 days. But I still stay very clean and generally unsmelly, since I can't do anything too sweat-inducing anyhow.

    It might help to talk to a therapist who understands chronic illness, to help you adapt and deal with your cleaning urges. ME and excessive cleaning are simply not compatible.
     
  20. Jemima37

    Jemima37 Senior Member

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    Thank you so much. You be given me a huge huge kick up the bum and reassurance I needed to hear. I am so incredibly hard on myself about the way I no longer dress smart or wear make up. I've not had a haircut the last 2 years. I never go out because of the reasons I said in my reply to Tania about me crashing if I care go out even for a drive.

    Last yesr I felt bad and crashed maybe once every 4-6 weeks. Id have good days where I could do much more than I can now but this yesr it's been a constant every day is a bad day 7/10 in severity. Every day I feel weak, drained all over and exhissgrd. I get breathless just folding washing or making a meal for the kids. The whole time I'm up I'm thinking I can't wait to sit back down. Where as last year I wasn't that bad and last yesr I thought was terrible. This year so far has been 10 times harder.

    My kids uses to helo bur I've let things go beinf so tired bur yes they need to do more. I am so house proud so I best mysrkf up for things i can't so now. I used to do it all. Now I feel guilty if hubby Hoover's and mood. I feel guilty if he cooks at the weekend or id the kids have 2 take away in the week. I used to cook every night even last year but the last few months I just can't.

    I'm carrying such guilt we cancelled our caravan holiday this year. Beating myself up we don't do family days out together this year like we still did last year. Hubby takes the kids out to the cinema and badminton and I have to stay home. It's all too much for me. I was pushing myself to rhe park or duck pond only a few months ago but after every visit i crash and thats just sitting in a park or riding as a passenger in a car. Ive not been out in 3 weeks as a result. Its led to agoraphobia pretty much. But my health drives all my anxiety. The crashes rule my life.

    My daughter leaves primary school this month and has a concert for parents to attend and a leavers service. I know im too unwell to go and watch either. It would be so hard to go there too as this year I've been isolated at home. I did her Christmas concert in a huge church in December and I crashed for a week after. I enjoyed it but was so unwell after. Now do I tell her I can't make her leavers services? I feel the worst mother in the world and have cried every day this last week about it. I saw both son's leave and I feel guilty I can't for my little girl.

    I shall try slpwonf down on the showering and hair washing. My friend said she had sever ME but still made herself shower every day so part of me has felt I should too because maybe that is very important to still do that.

    Thank you so much for your kind reply. It's been so hard and having a gp that just repeats sodium and hba1c tests and then brands me just depressed it's been so hard. Every crash I panic why I feel so unwell and a gp that can't confirm why. It's been the hardest 19 months of my life.

    Julie
     
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