International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Constant crash anyone?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jemima37, Jan 12, 2018.

  1. Jemima37

    Jemima37 Senior Member

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    I was diagnosed with cfs last summer. I' h 2 years of chronic fatigue prior to this.

    In October I started with bad anxiety, I have anxiety anyway but a setback hit. I also have SADs so in the winter I often have a flare of anxiety and depression. This winter it has been much worse and the anxiety was awful. I was shaking for 12 hours a day, unable to function due to how weak, sick, shaken, dizzy etc I felt. I ended up bed ridden mostly too afraid to walk around as I felt so horrific. I was having 10 hour panic attack on my bed terrified to move, it was devastating.

    Things have improved anxiety wise the last month which is such a relief but in the last 3 weeks fatigue hit me very hard. It's been especially bad this last week. My husband says he isn' ssurprised after all I've just been through with crippling anxiety and panic.

    When I first had cfs, for 18 months I'd daily feel fatigued and weak so functioning at home was tough but I'd crash if I over did things or any anxiety and stress. When I crashed though my worst symptom was weak burning thighs and the drained weak body. This time I'm not getting that. My cfs improved over last summer by 50%, now it' rreturned my symptoms feel different in some ways.

    I' nnot having PEM as such, because I'm not over exerting myself. Ever since the bad anxiety where I was almost bed ridden I've been unable to do much. My heart races and I feel drained doing anything so I know I've deconditioned. Daily though this is how I feel and my anxiety is high again but more in a worrying about health way than panic and daily physical symptoms. It's more worrying constantly it's something more sinister and I'm going to die.

    Daily I feel like this..
    An all over flat battery feeling. Whole body just feels drained.

    When I walk about I'm hunched over, feel weak and just too drained to be walking.

    Heart races walking about and after 15 minutes I sit down and it takes a while for me to feel better. I feel I've done a workout doing anything.

    Woozy head where I feel off balance walking about sometimes.

    When I sit up from lying down I get a low BP feeling in my head but checking bp it doesn't drop. It goes up when I sit up or function.

    Nausea and ibs issues which I think is the fear about how bad I feel as it scares me.

    Achy heavy eyes.

    Fuzzy cotton wool brain fogged head.

    Tire just talking, have to take a break talking after 15 minutes as I feel light headed and woozy talking too much.

    So I just generally feel drained, hunched over walking and feel too ill to be walking about. Then when I do walk about it drains me further. The last 2 days I've felt worse than usual. I showered yesterday morning, shower every other day since this fatigue hit and yesterday I really felt too ill to be in the shower but forced myself and spent all morning feeling horrific for showering. I dread showers and hair washes.

    I'm not getting the same burning weak thighs I used to get so I keep worrying is this cfs. My friend and hubby think this is all a come down from 3 months of severe anxiety and SADs. I really hope so but I'm worrying myself this isn't cfs if I daily feel this bad and it's not pem as such, it's every day I feel like this. My fired says of course that's cfs, you can feel very ill every day, not just pem. I have never had the sore throat, raised glands or sleeping in the day. I get tired in my eyes of course but it's more this broken body feeling. I can never nap in the daytime.

    Can anyone relate? It's so hard as I'm a mum to 3 children and I've felt such a let down to them and my hubby.

    Jem
     
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  2. gregh286

    gregh286 Senior Member

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    all standard CFS symptoms.
    they wax and wane and change over time, any long termer tell you that. symptoms come and go.
    i might get shot down for this, but prednisone is good when i am in real dip.
    speak to GP about it.
    thing is, they think we are physcotic, and CFS is so real we need pretty good dose of pred.
    tired when talking is normal with CFS.
    I started calcium pyruvate recently, feels "promising" but its very early.
    I have 2 kids as well and by god its not easy.

    Good luck!
     
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  3. Dechi

    Dechi Senior Member

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    It really looks like CFS. Symptoms vary in intensity and even change in the way they feel, from day to day and month to month.

    Try not to worry too much and rest as much as you can.
     
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  4. justy

    justy Donate Advocate Demonstrate

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    I feel like this every day since becoming more severe. All common ME symptoms.
     
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  5. Jemima37

    Jemima37 Senior Member

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    Thank you for your reply. It' rreassuring to know I'm not alone but hate to think of anyone feeling like this.

    I feel terrible daily and ive ended up dreading shower and hair washing and getting so overwhelmed by them. I even cry knowing I have to do it everything's become so hard. After a shower I crash and feel awful. So I now have anxiety about these tasks, it's so hard.

    Its hard being a mum and feeling like this isn't it. It's really tough.

    Jem
     
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  6. Jemima37

    Jemima37 Senior Member

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    Thank you for your reply. It' rreassuring to know I'm not alone but hate to think of anyone feeling like this.

    I daily just feel awful. I feel I've a total flat battery and my body hates any movement. Soon as I have to walk around I feel worse than when sat. Stay I don't feel great but moment I walk I just feel I will drop and get anxious. It's so horrible and scary. My heart races doing anything and my body feels drained.

    I feel terrible daily and I've ended up dreading shower and hair washing and getting so overwhelmed by them. I even cry knowing I have to do it everything's become so hard. After a shower I crash and feel awful. So I now have anxiety about these tasks, it's so hard.

    Thanks again for replying to me.

    Jem
     
    justy likes this.
  7. Jemima37

    Jemima37 Senior Member

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    Thank you for your reply. It reassured me.

    I feel terrible daily and Ive ended up dreading shower and hair washing and getting so overwhelmed by them. I even cry knowing I have to do it everything's become so hard. After a shower I crash and feel awful. So I now have anxiety about these tasks, it's so hard. I feel awful sat down but a million times worse walking around trying to function. I just feel hunched over, heart races, and feel my body is run flat and can't work.. It's scary and I worry. What if its something more sinister. I had 4 lots of blood tests in 12 months last year. Then gp finally diagnosed cfs. Its hard having anxiety and this, having this for over 2 years it's given me a lot of anxiety issues, its horrible.

    Thank you again for replying to me.
    Jem
     
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  8. SueJohnPat

    SueJohnPat Sue

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    So sorry you are feeling this way. My cfs always got much worse in the fall and was terrible in Jan and Feb, I would feel tremendous anxiety also and would act crazy and scream in frustration. Physically I never fully collapsed but would have complete malaise and would feel much worse if I tried to move around, I would spend my days binge watching tv series from a recliner. I had a long successful career/ marriage and never had this before in my life.

    . A year and a half ago I started investigating mold avoidance. My home did not have any black fuzzy walls. Please look at the website Paradigm Change. I Am still ill but have improved greatly . I did a “ mold” sabbatical.
    If I sleep outdoors I don’t get crazy anxiety symptoms. We bought a house with a sleeping porch. If I spend too much time indoors I still get very bad anxiety symptoms. I do “ forest bathing “ now also which totally gets rid of my anxiety which seems to come from nowhere. I don’t know if this could help you of coarse but I thought about it for about 6 months before I tried it.

    This can be a very very tough disease at times. Sometimes if I got crazy anxiety , like jumping out of my skin I would take 2 teaspoonfuls of baking soda in an 8 ounce glass of water and drink it. This would calm me down in about 10 minutes. This was suggested by my cfs doctor at the time. I did this for about a year before avoiding mold. It enabled me to function a little better.

    I am a mom too and I feel you, it is extremely difficult. It is hard to believe that you can feel so bad and have nothing “ serious “ . I have been there.
     
  9. ljimbo423

    ljimbo423 Senior Member

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    Hi Jem- I used to feel like that most every day for several years. I remember feeling like I was dying, often. I guess that was probably just from being so low in energy, I felt like my life force was being drained out of me.

    I used to get massive anxiety attacks, regularly for years. I haven't had one now in months! I also no longer have to spend my days in bed. I sleep about 8 hours a day and thats all I need.

    I also do 4-6 hours a day of physical stuff like making meals, cleaning and I even do a little karaoke 2-3 times a week, with a karaoke machine I have.

    I have improved by treating dysbiosis and leaky gut. I started very slowly with just cutting back on junk food like cookies etc, which feed bad bacteria in the gut and worsen inflammation.

    Jim
     
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  10. Mary

    Mary Moderator

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    @Jemima37 - Do you know your vitamin D levels? Low vitamin D has been associated with SAD. https://www.ncbi.nlm.nih.gov/pubmed/10888476 I have to take 5000 IU a day just to keep my levels normal. I don't get enough light due to ME/CFS.

    A light therapy box may help with SAD too. I think there are people on the board who use them who could give you more information and of course there's a ton of info on line.

    Re your current fatigue and anxiety - it reminded me of when my potassium levels dropped. I didn't know what it was when it first happened but it made me very tired and lethargic and unable to do hardly anything. Low potassium can contribute to tachycardia and anxiety. I finally discovered what it was after starting Freddd's B12 protocol and reading about potassium. https://www.livestrong.com/article/404117-low-potassium-anxiety/

    And, my potassium levels were always in the normal range so there was nothing to indicate that this was the problem. But former member Richvank (who died unexpectedly unfortunately a few years ago) wrote about people with ME/CFS having low intracellular potassium, despite normal blood levels.

    So you might try drinking some low-sodium V8 or tomato juice, (I'd try several glasses) or other high-potassium foods and see if it helps. If you do have low potassium, one banana would probably not be enough. I now take 800 to 1000 mg potassium gluconate a day (in divided doses) and my symptoms of low potassium have not returned. The daily RDA for potassium is 4500 mg, and that is the minimum necessary.

    I used to have a lot of weird symptoms for which I was able to track down their causes after a lot of reading and experimentation. I don't think it's necessarily true that you're just having symptoms of ME/CFS and there's nothing you can do. Ideally we would all have doctors who would do nutritional evaluations but they are rare. But if you can find one, I'd strongly recommend you go see them.
     
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  11. Busson

    Busson

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    Oh my goodness I didn't expect anyone else to get what I get! Apart from the talking because I get better if someone talks to me calmly although I do get a lot worse if the conversation makes me think a lot.

    I was diagnosed with migraine especially as some forms have a lot of neurological symptoms but that was an error. I also had the arteries going up the neck to the head checked out too but they were okay.

    I am next going to get checked out for anemia which I think may be secondary to poor nutrient absorption, in my case, especially of vitamins and minerals. In other words, it may not show up on basic tests because the levels are okay but my body doesn't absorb and use nutrients the right way.
     
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  12. Eneia

    Eneia

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    Practicalities: the Phillips blue glo has been a godsend on my worst years for SAD. Any current model would work too.
    https://www.gizmodo.com.au/2008/11/sad_light_therapy_clock_makes_you_less_sad-2/

    Maria Ciley's Flylady habits of morning/evening routine have gotten me out of the bad rut regarding getting dressed, or anything I just couldn't do because too depressed. Depression when when I started supplementing over 300mg Mg. Now only lassitude, and not even every day.
    Magnesium (currently taking mag malate 500mg/day before bed + transdermal) improved daily living no end
    Niacin contributed to a better night's sleep

    If you start using co-washing to wash your hair (with silicone free conditioner like Alberto in the US, or some Garnier shampoos from Savers in the UK) look it up, eventually your hair gets less greasy, and after 2 years I just needed to wash my hair every 1.5 weeks, the first year was a week fairly quickly.
    The way we washed before: with a cloth, only smelly parts, is a good option to be clean with not too much effort, and if you do one bit when you go to the bathroom, you will be clean by the end of the day if you have energy, and otherwise soon enough!

    What you need are solutions and shortcuts, systems in place so you follow them when you're able to do anything.
     
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  13. Sarahloudobby

    Sarahloudobby

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    I just wanted to say that you’re not alone, in often in the worrying state of mind that it’s not just cfs and something else is going on. My symptoms tend to go in circles. I’m currently having a bad patch of ibs and anxiety, plus just feeling very tired. Hope you feel a little better soon
     
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  14. Pink

    Pink Senior Member

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    i have a lot of the same symptoms, the anxiety sometimes stops me from functioning, but other times it forces me to do too much, and i'm left nauseous from exhaustion. Actually, i'm nauseous from exhaustion all the time, even without doing anything.
     
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  15. lukesirde

    lukesirde

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    I've been lurking on PR for some time . . . Knowing I'm not the only one who is in a perpetual low energy state is reassuring (but at the same time horribly upsetting).

    A major issue for me is the catch 22 of finding any type of help within the NHS and the detrimental effect on my precious energy levels with any effort in this area, especially considering I have never had a positive experience/outcome from such appointments. Even though I have pleaded for further tests, nothing has ever come of it. In fact, it has taken three A&E visits and a 5 year crash to get an initial rheumatology appointment.

    Come on chaps. Any positive feedback regarding our broken NHS?? Or is it best we wade through these murky waters alone . . .?

    I actually tried to sound a bit more positive there . . . But I think I failed . . .

    Anyway . Best wishes to all
     
  16. Busson

    Busson

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    I found my GP was very sympathetic but very unhelpful - probably because he favoured a psychiatric diagnosis. Another GP that opens some different avenues of investigation may be worth considering.

    I eventually found B12 was important but even after establishing that it was hard persuading my GP it wasn't a placebo effect. Sigh.
     
  17. Sarahloudobby

    Sarahloudobby

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    I have had sympathetic and even helpful doctors but usually it seems to be a case of what is being ruled out as opposed to helping with what it is x
     
  18. Jemima37

    Jemima37 Senior Member

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    Thank you all so much. I appreciate all your replies. I'm sorry irs taken me so long to read them.

    Much love to you all.
    J
     

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