The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Is this a typical crash feeling?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Jemima37, May 6, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    I hope it's ok I post. I posted on the introductions board and had a nice response.

    I've been ill for a year with crashes, chronic fatigue daily etc.. gp found nothing but an undercative thyroid but that's treated and within range now. Yet I continue to feel unwell. Gp ran a lot of bloods in November but found nothing, he ruled out autoimmune conditions, anaemia, glandular fever etc.. he said that would confirm I was dealing with cfs that had started after a lot of stress in my life. I have anxiety and ptsd since being attacked late 2012 by my brother and suffering from abuse from my extended family for refusing to forgive and accept my brother back in my life.

    Over the last year I daily feel fatigued, breathless and fast heart walking just upstairs, daily I feel woozy in my head and just generally tired. A crash though happens if I have any emotional stress (if extended family members contact me for example) or if I over exert myself.

    Yesterday I had energy and after 2 weeks of constant fatigue where I couldn't open my eyes, I was happy so I walked my dog, did house work, drive the kids to school, showered, cooked a big breakfast... and that was all by 9.30am. I then felt very sick and weak. Heart was racing. I had to rest. At 2pm stupidly because I felt a bit better I decided to put the washing away. 10 minutes into doing it I felt so weak all over, heart was racing, legs weak and felt rubbery, a feeling I was dropping through the floor and cold feeling. Across my upper back was aching and I just found it too tiring to breathe. Out of curiosity I took my blood pressure and it was low 90/58. My norm is about 105/65.

    I had to rest all night and today I'm feeling much the same. This is what happens when I crash, I struggle to even walk to the bathroom due to how weak and rubbery my legs feel. I feel I'm sinking or feel faint as I walk like the body is dropping but it's not. Cold feeling, heart steps up and just an awful weak feeling and I need to sit down asap. This type of crash can be a 10/10 severity where I can't even shower or like today this has been an 8/10, I managed a shower but felt exhausted. I've barely functioned today, have been downstairs twice and both times had all the symptoms I mention above.

    Is this typical cfs but without heavy eyes and tired head? For 2 weeks recently I daily had fatigued eyes and hale as but no severe weakness, that type of crash is rare but it was horrible fatigue where I could sleep all day feeling. But the crash I have now is my more common one and yes I feel tired but more the body symptoms.

    Can anyone relate and reassure me the way I feel is normal for cfs? I can have weeks of no crashes like this, in fact I've not had this type of crash in a month but day to day I feel exhausted easily and woozy. I tire very easily so have to do short trips out and pace. If I don't pace then this type of bodily crash hits but it also hits if I speak to my mum or anyone from my traumatic past.

    Sorry this got long. My go has not been very good and hasn't officially diagnosed me, he has seen me in a crash many a time and blames anxiety, mood or a virus lol! Now he's worrying diabetes or something despite bloods all being fine for the things he suggests. Then other times he's sure it's cfs. Another go said it was very much like cfs. I've been coping alone with this for 18 months and that's why these crashes scare me so much.

    Thank you
    Julie
     
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  2. Cheesus

    Cheesus Senior Member

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    Hi Julie

    Of course it is alright to post! Welcome to the forum :)

    Yes, this does sound to me quite typical of CFS. Indeed the way people can experience PEM is quite heterogenous. One person might get aches and feel the need for excessive sleep, whereas others get swollen glands, muscle weakness and brain fog. It can be quite an individual experience.

    Having said that, there is a core theme to PEM, which typically consists of a colossal drop in your energy expenditure and a feeling of general (and often quite severe) unwellness. I have experienced what you describe many times during the last 4 years, so you don't need to worry about being the odd one out.
     
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  3. Jemima37

    Jemima37 Senior Member

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    Thank you so much for replying, it's such a comfort as I've dealt with this for so long afraid.

    My gp has never had answers to why I crash like this and has occasionally suggested cfs and the next he says something else. Then he says he can't diagnose cfs himself. It's been awful and lonely.

    I don't get the flu symptoms or swollen glands, for me it's chronic fatigue and all those awful weak body symptoms and low bp when I crash. My lovely husband luckily takes over if I crash at a weekend like today and during the week tells me to leave all jobs and he does hem after work. I'm tired daily but never sleep although some days eyes feel so sore to keep them awake but for me it's been awful body fatigue and weakness then the weakness crashes after emotional upset or too much physical exertion. I do have brain fog daily which is tough having 3 children.

    Thank you for your kind reply.
    Julie
     
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  4. Cheesus

    Cheesus Senior Member

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    Is your GP able to refer to your a specialist so that you can get a proper evaluation and diagnosis?
     
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  5. Jemima37

    Jemima37 Senior Member

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    He's suggested referring me to a general medical doctor in the hospital but I refused. Since all of this I've been suffering from agoraphobia and it's just too much for me right now it's so difficult. I can't even get to he gp surgery since a huge panic attack there when in a crash 18 months ago, my gp visits my home to see me and do tests.

    I sound an idiot don't I lol!
     
  6. Cheesus

    Cheesus Senior Member

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    No you don't sound like an idiot at all. When I first got ill I remember going through short phases of agoraphobia - I would try to leave the house to do something and end up crashing whilst I was still out, often when I was all by myself. It got to the point where I was really freaked out about leaving the house because I was scared of crashing whilst I was away from safety.

    Fortunately it didn't last long for me, but that doesn't mean that you should feel ashamed for how it is affecting you.

    I hope you can get on top of these anxiety issues - anxiety is an absolutely horrible beast than can be very disabling in its own right. Also it would be really good if you were able to see a specialist at some point.
     
  7. Jemima37

    Jemima37 Senior Member

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    Thank you.

    I had anxiety and agoraphobia in 2012 after I was attacked but overcame it after a year of therapy. It returned when I went through this ill health because like you I'd feel so ill when out I became terrified to go out. It also hard to go out feeling so fatigued and ill sndnits also led to severe social anxiety being home a lot by myself with no social interaction. I only have my husband and children who I see, having no family or local friends. It's been so tough.

    I'm having therapy for the anxiety again the last 5 months which I hope will help but I feel until the health is under control I will continue to suffer with the agoraphobia purely due to how weak and fatigued I feel.

    Thanks again for your replies.
    Julie
     
  8. ja21ne

    ja21ne

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    Please consider Postural Orthostatic Tachycardia Syndrome or POTS. It is sometimes linked to CFS. Some of your symptoms sound similar e.g. Symptoms exacerbated after showering and it may explain some of your anxiety.

    POTS is very much more treatable than CFS. I have POTs as a result of also having CFS and I take ivabradine and increased salt and wate to control it.
     
  9. Cheesus

    Cheesus Senior Member

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    Do you think it could help if you learn to recognise your energy limits? That way, you may have less risk in leaving the house because you would be less likely to overdo it.

    Also, if you need to see a doctor, one possible solution is to ask your husband or a hospital porter to help you with a wheelchair. I know how it feels to use a wheelchair and it isn't nice - it is like admitting you're actually quite ill. However, no one would really know the difference if you're at a hospital.

    Obviously I understand that is not the entire problem, so would not alleviate your anxiety altogether if having to venture outside, but it might help a little bit. Also, if I have to do something that will put a significant stress on my mind or body that I really can't avoid, I will take a few mg of diazepam (valium) to get through it. It is quite remarkable how much diazepam can help, but it obviously has to be used very sparingly. Perhaps you could suggest it to your doctor as a means to get through an appointment.
     
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  10. Jemima37

    Jemima37 Senior Member

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    I actually suggested I had pots to my friend who has cfs but she said I'd have to have a heart rate elevated over 120 for 10 minutes standing?

    For me I can't stand long periods, I feel I'm sinking through the floor if I do and feet feel cold. I have to sit often on exertion or I feel very woozy and that sinking feeling hits. Climbing the stairs my heart pounds and I get low bp a lot. Weak shaky legs too that can last days and I call a crash. My crashes are different to the daily fatigue and issues standing for long periods.

    I've had these symptoms over a year now.

    I couldn't have the tilt test that's my only issue. I've been suffering from anxiety and agoraphobia throughout the last 18 months so I couldn't even get into a hospital to do a tilt table test.

    I have had bloods that recently have shown sodium keeps dipping. Then it'll go back up but next test it's dipped again. I've increased my salt intake which helps my levels. I use pink Himalayan salt.

    Thank you for your reply. I really have wondered if I have pots.

    Julie
     
  11. Jemima37

    Jemima37 Senior Member

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    Thank you for your advice and understanding.

    Yes a wheelchair would help a lot as I am sure I have POTS. I cannot stand for long periods or I feel so cold in my feet and like I'm sinking. Scary.

    Yes it's the panic attacks I'd have there that's the issue. I've never taken diazepam, it scares me lol! But I have considered I'd have to if need be.

    Thank you
    Julie
     
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  12. jpcv

    jpcv Senior Member

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    Julie , don't take diazepam for panic attacks, there are better and less toxic drugs. Treat you panic, get rid of that, it' s going to help you deal better with your cfsand will improve your life.
     
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  13. Valentijn

    Valentijn The Diabolic Logic

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    I don't have heavy eyes and tired head as part of ME - though I did have that with some extreme exhaustion due to hyperglycemia with diabetes onset. Your reaction to your excessive activity sounds like it's at least partially due to some form of dysautonomia. The actual PEM symptoms will be delayed more. Though of course with ME, we often get both the immediate exercise intolerance from orthostatic intolerance and the delayed PEM from too much exertion.

    Is your agoraphobia an actual fear of being outside, or is it a fear of having physical symptoms and not being able to function while outside? I'd dread going out without my wheelchair, but that's because I know how sick it'll make me if I stand up too long or walk too much. If it's a fear of the symptoms, then you just need more support in getting out - someone to drive you to the hospital, and drop you off by the front door or push you in a wheelchair (hospitals here also have wheelchairs for visitors who need them by the front door).

    In any event, I strongly recommend getting a heart rate monitor. There's a lot of good wrist units on the market, and even a cheap pulse oximeter can work if you're pretty sedentary in the house. Then you can figure out what causes you problems, and alter your activity patterns (pacing), see what you need to avoid, and maybe figure out ways to do activities that won't hit you so hard.
     
  14. Helen

    Helen Senior Member

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    Julie, could it be that although your thyroid lab tests were in normal range, you aren´t optimally treated? That is not unusual when it comes to hypothyroidism. Maybe you know that checking your body temperature , before getting up in the morning, might give you an idea of how the medication (and metabolism) is working. 36.8-37 C is considered normal, though it may vary of different reasons.
     
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  15. Jemima37

    Jemima37 Senior Member

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    I never would. I was so ill with anxiety after my brother attacked me in 2012. Gp gave me diazepam and I refused. I wouldn't go down that route.

    Thank you x
     
  16. Jemima37

    Jemima37 Senior Member

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    Hi Helen

    I have my thyroid done every 8 weeks. Last results in March showed my TSH was 1.7 (range 0.27-4.2) Ft4 19.8 (12-22) and ft3 5.0 (3.1-6.8).

    I'm on 75mg of thyroxine. I'm checked every 2 months. I've been on Levo 12 months now.
     
  17. Jemima37

    Jemima37 Senior Member

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    Thank you for your helpful reply.

    I do way too much activity being a mum to 3. I do about 6-7000 steps a day on my Fitbit. Crash days far less but I'm in a crash today and I will still hit 5k I'm sure.

    I had agoraphobia in 2012 after my brother attacked me but that was due to fear of seeing him and panic attacks I'd developed. This time it hit in September 2015 (if overcome the previous agoraphobia after a eat of therapy), I was at the doctors having a blood test, when they were testing me for everything trying to work out why I was so tired. I felt ill that day with fatigue and weakness and the nurse kept me waiting 45 minutes! By the time I got in I felt so ill I had a huge panic attack during the blood test, so bad I couldn't leave he room as I was lying down so dizzy and scared. After that I became scared to go to appointments but once my fatigue took a huge hold on me last year I became very agoraphobic due to feeling so weak and fatigued, I was afraid to go out feeling so ill and when I did say in a shop I'd have high anxiety triggered by feeling so unwell. So it's more how ill I am causing the anxiety about being out. I don't feel safe being out alone being so weak and fatigued. I hope that makes sense.

    I've also developed social anxiety to the point right now opening the door to the postman I find too hard. That's being trapped at home with no interaction caused it. I've my hubby and children but I don't see other people really and I've lost all my confidence to even say hello to my neighbours

    Thank you for your kind reply.

    Julie
     
  18. Dechi

    Dechi Senior Member

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    Hi Julie I am sorry things are being so tough for you right now. Being a mom to 3 children sure makes it hard to rest. Hopefully you fill find ways to get time for yourself do just that. It's at the core of our battle with ME, it's an absolute necessity.

    I might have missed it but are you in therapy for your PTSD, agoraphobia and panic attacks ? If not it would be important to find a good therapist to help you. Although it won't treat ME, taking care of anything that causes you stress and disturbs your sleep will have a beneficial impact on your illness. Getting help with dealing with the losses that this awful disease brings upon you is also important. My psychologist has been a great help to me. I don't know what I would do without him.
     
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  19. jpcv

    jpcv Senior Member

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    Panick attacks + ME is not a good combination, treatment of Panic disorder and agoraphobia is pretty much straightforward nowdays, I don´t want to keep pushing you but you should consider going to a doctor and treat it, you are going to feel much better.
    All the best.
     
  20. Jemima37

    Jemima37 Senior Member

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    Hello

    Yes I see a therapist who specialises in ptsd and anxiety and her daughter has ME so she understands my situation well.

    My ptsd was much better until I became ill and my emotions weee brought back to the surface as I was brace to ask my mum for support and she rejected me. I've found it very hard to cope with.

    The agoraphobia this time is purely due to how unwell I feel physically. If that got better I know my agoraphobia wouldn't be a huge issue for me.

    Thank you for your reply.
    Julie
     
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