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Heavy eyelids corresponding with PEM-like symptoms!

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Francelle, Feb 6, 2011.

  1. Francelle

    Francelle Senior Member

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    Right from Day 1 of this condition, 3/8/07 (3rd August 2007), one of my symptoms has been heavy eyelids. Initially it happened continuously for the first month or two but then it settled into a pattern of me waking about one morning every week or two virtually unable to open my eyes.

    The eyelids are not sticky or puffy indicating infection or allergies but literally feel as if the muscles are totally unable to open the eyelids. They feel as if a heavy weight is pushing them closed. When this happens I simultaneously can't stay awake. I wake but my eyelids are so heavy, they don't stay open for more than a second then I fall back to sleep...this cycle goes on for hours, until I usually eventually get up anyway.

    Recently though and I must be pretty dense because it's took me until mid 2010 to recognise a pattern....when I do get out of bed, it is almost the worst possible day I can have. My heart pounds at the slightest movement and I become so breathless and the energy just drains out of me, so much so, I just have to either lie down outside on our swing-chair for the rest of the day or go back to bed.

    It happened again this morning so I have been reflecting on what I did at the weekend. As it was such a wet weekend, we did nothing, just stayed indoors and blobbed out, so it can't be PEM from doing too much. (Oh yes, just remembered, we sorted a lot of papers in my study on Saturday - maybe that was it!!)

    My HR has gone way beyond the AT just walking across a room today. I monitored it this morning for the first time during one of these events, as I've been reading up on some of the Anaerobic Threshold testing evidence and heart rate monitoring on PR. Guess I should have been monitoring the HR on Saturday, more importantly!

    Anybody else have this symptom and any ideas?

    On reflection I guess if it is an indicator of PEM for me, then what a great symptom! Scenario! I wake with heavy eyelids, I just stay in bed ALL day!

    I have wondered often about Myasthenia Gravis but it doesn't really fit.
     
  2. rlc

    rlc Senior Member

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    Hi Francell, not quite sure if you would define it as eyelid weakness or paralysis but on these links you'll find the conditions that can cause these symptoms http://www.wrongdiagnosis.com/sym/eyelid_weakness.htm http://www.wrongdiagnosis.com/sym/eyelid_paralysis.htm if you then click on where it says symptom checker and then click on where it says add a second symptom you can keep adding more of your symptoms and this should narrow down the list of possibilities which you can then get a doctor to investigate.

    All the best
     
  3. Francelle

    Francelle Senior Member

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    Thanks rlc - funny thing but I totally DESPISE wrongdiagnosis as a website. I can find my way around many complex websites but wrongdiagnosis.com I have never been able to master...grrr! It's like a revolving door, it never gets you anywhere - lol! Perhaps you can give me the heads up on how it works or maybe I'm just too dense.
     
  4. maryb

    maryb iherb code TAK122

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    Francelle I had this for a couple of years through my worst patch, but not quite as bad as you, Dr Myhill said it was to do with the muscles in the eyes, just not enough energy, to do with mitochndria?? can't remember now, at the time it was even an effort at times for me to chew food, again the muscles in the jaw. I get eyelid droop as well which is linked to food intolerances, a strawberry can nearly close one eye the following day.
     
  5. justy

    justy Senior Member

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    Hi Francelle, thats strange because i have had this on and off for most of my life and thought it was just normal. I've been getting it a lot more recently in the mornings and mentioned it to my husband saying something like "you know that feeling when you cant open your eyes " and he just looked blank. I used to sometimes get it during the day and would have to fall asleep. That was about 14 years ago when i had to sleep a lot of the day, i dont do that now.
    Hmmm what a strange illness this is.
     
  6. rlc

    rlc Senior Member

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    Hi Francelle, I know what you mean, it's not the most user friendly site at times but i've got very used to using it so if I can help in anyway let me know! theres certainly a few diseases on the list that could easily be misdiagnosed as CFS.

    If your feeling to tired to bother with it, if you want to post or PM me some more of your symptoms i'd be more then happy to see if i can narrow down the list of possibilites for you.

    I noticed in one of your earlier posts that you said you'd got gastroparesis, looked it up on diagnosispro and there's alot of conditions that cause it which match with the conditions on the wrong diagnosis lists for your eyelid symptoms! like hypercalicimia, hyperkalemia, diabetes etc link here http://en.diagnosispro.com/differential_diagnosis-for/gastroparesis-atony-causes/10784-154.html unfortunatly the diagnosispro site seems to be going through maintainace of something and i can't add another symptom at the moment. Let me know if you want any help.

    All the best
     
  7. Sea

    Sea Senior Member

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    My first thought was Myasthenia Gravis as my Dad has this - and it does correlate with how bad he's feeling overall. I see though that you have already considered MG. What made you rule out MG?
     
  8. rlc

    rlc Senior Member

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    Hi Fancelle and every one reading i thought i'd write out an explination of how to use the symptom checker on the wrong diagnosis site because it's a very useful tool for finding correct diagnoses.

    Using eyelid paralysis as an example if you click on this link http://www.wrongdiagnosis.com/sym/eyelid_paralysis.htm you'll see it provides you with 14 possible causes of this symptom near the top of the page it says 1 eyelid parasysis introduction 2 causes and then 3 Symptom checker click on symptom checker and it will take you to here http://www.wrongdiagnosis.com/symptoms/eyelid_paralysis/symptom-search.htm where you will see a long list with eyelid paralysis plus other symptoms such as eyelid paralysis plus nerve symptoms etc etc.

    Take the time to carefully read through the list until you find eyelid paralysis plus another symptom that you have and then click on it. Using eyelid paralysis and abdominal symptoms as an example clicking on it will get you here http://symptoms.wrongdiagnosis.com/cosymptoms/eyelid-paralysis/abdominal-symptoms.htm and you can then see that the number of possible conditions that can cause these two problems together is 5. If you then scroll down the page until you find eyelid paralysis add a 3rd symptom you can then click on it and add another of your symptoms link http://symptoms.wrongdiagnosis.com/cosymptoms/eyelid-paralysis/abdominal-symptoms-add.htm#narrow and so on until youv'e narrowed it down to a few possibilities that you can then get a doctor to investigate.

    Its important to be as accurate as you can when deciding on which symptom your going to add and start with the most definate symptoms that you have, by that i mean things like eye paralysis are very definate and not found in many illnesses whereas things like poor sleep are found in numourous illnesses and a lot of people who aren't sick.

    Hope this helps someone!!

    All the best
     
  9. taniaaust1

    taniaaust1

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    You described that symptom very well. I had that symptom for the 9 mths I was bedridden.... unable to keep my eyes open and would just fall asleep again (at times I was going 23 hrs at a time unable even to eat or drink as my eyelids were so heavy so I couldnt stay awake). For myself... its a symptom I only get if my CFS/ME is very very bad or if im overdoing things. I personally suggest yes stay in bed if you are getting that symptom.

    This symptom in my own case if I try fighting it, can end up coexisting in ending up not able to move at all...eg lifting a finger is like trying to lift a huge brick on it... for myself it can lead to being paralysed for a while, all body gets too heavy to move and then like messages dont then get to the body till one recovers some.

    me too.. when my eyelids werent so heavy that I ended up going back to sleep again.. at the times I could eat, I also have much trouble chewing my food. I could only chew very slowly and not well (ended up swallowing only half chewed food as I could only do a few chews). Another reason why i think this eyelid symptom only comes when ME is quite bad.
    .....

    When thinking about if something has caused PEM... I find that at times it can kick in THREE days after I over did things, its like at times it takes time to catch up with me, other times it catches up with me right away. So think back what you did in past 36 hrs (thou if anything like me, you probably wont remember well)
     
  10. Francelle

    Francelle Senior Member

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    Thanks everyone for your helpful responses. So pleased to hear that some of you have also had this symptom - lol.

    Next week I’m seeing an M.E./CFS doctor so if I get a chance I will run this eyelid symptom past him too.

    Rlc I think I may be getting the hang of wrongdiagnosis, I will try some more options when I feel a bit better. Many thanks. Also yes, I do have Gastroparesis and have been checked for quite a number of the things on that list like the really scary ones such as Amyloidosis and Scleroderma. With all my other M.E. like symptoms I believe it is a post infectious cause as I know I tested for chronic Mycoplasma Pn. in 2005 – 2008.
     
  11. taniaaust1

    taniaaust1

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    I dont like the wrongdiagnoses search on symptoms.... when i put my CFS/ME symptoms it, it actually rules out CFS/ME due to the more severe symptoms I get with it. (unless they have since changed it as I emailed a long time back to tell them it ruled out what I have eg unconsciousness/fainting it dont recognise that can happen in CFS/ME.. and i get that with my POTs which i have as a symptom of the CFS), I also requested that more of the CFS/ME symptoms be added to the site.

    I'll have to check it out sometime to see if it ever was changed.
     
  12. Wayne

    Wayne Senior Member

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    Hi Mary,

    Thanks for posting this. After checking out Ric's links, I noticed they didn't mention mitochondria dysfunction, which is what I feel is the cause of my own eyelid weakness, along with nervous system stress and dysfunction. Thanks for the links Ric.

    Francelle, eyelid weakness and heaviness is actually one of my primary overt symptoms of ME/CFS, one which my partner often uses to gauge how well I'm doing at any given time. It's also generally my first indicator for me as to whether I'm beginning to overdo things, especially conversations with other people. I've noticed conversations can be especially draining, because of the fact so much eye energy is involved.

    Also, I've learned one way to get better insight as to how I'm doing at any given time (when I don't know for sure), is to look in the mirror, and relax my eyes to the point of feeling comfortable and not straining. Very often, my eyes will close to merely a slit, or close completely. If so, I'll forgo any further activities until I'm "looking" better.

    All of the above is why I make concerted efforts to close my eyes and rest throughout the day, especially when I'm struggling more than usual. Usually at this time, I will massage around my eyes and try to get the muscles in the eyes and in the periphery to relax. I initially started doing this kind of massage because of my understanding that wherever you massage, you release and/or send energy to that area, and have found that it works for me.

    I've also found it helpful to use my alpha-stim (micro-current therapy) and other various gentle energetic techniques to get my whole nervous system in a much more relaxed and balanced mode. In addition, I'll often use inner light and sound techniques.

    You're not alone! :Retro smile:

    All the best, Wayne
     
  13. valentinelynx

    valentinelynx Senior Member

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    Having just begun to suffer from this symptom: inability to open one or both eyes after sleep, I looked it up and discovered it is a syndrome called "Apraxia of Lid Opening." It is usually associated with blepharospasm (involuntary contracture of the muscles that close the eyes), but I don't think I have blepharospasm. Both of these eyelid opening abnormalities are considered "dystonias" (abnormal muscle contractions) and are associated with a wide variety of neurological diseases (e.g. Motor Neuron Disease & Parkinson's) but also occur "idiopathically" (without association with other diseases).

    I am wondering if other ME/CFS patients are experiencing "Apraxia of Lid Opening" (inability to open eyelids)?
     
    actup likes this.
  14. Molly98

    Molly98 Senior Member

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    I also suffer with this when I have bad PEM and have over done it.
     
    Cohen2 likes this.
  15. Neunistiva

    Neunistiva Senior Member

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    Myasthenia gravis is one of the diagnosis doctors went to great lengths to rule out in me. Even after all the tests came back normal, they still gave me the treatment because it's pretty harmless. I never even had droopy eyelids. So I think it's definitely worth looking into.
     
  16. Webdog

    Webdog 84%-91% undiagnosed

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    I'm about to try mestinon for the eyelid droop and other Myasthenia Gravis type symptoms. However, the tests I've had for MG came back negative.

    I should note the eyelid droop has only been in the past 10 years of my 4 decade long ME/CFS.
     
    Neunistiva likes this.
  17. Neunistiva

    Neunistiva Senior Member

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    If it comforts you any I didn't have any sideffects from Mestinon
     
    Jenny TipsforME and Webdog like this.
  18. lnester7

    lnester7 Seven

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    For me is sign of head inflammation (My neuro says is impossible), But is like when my inflammatory cytokines are too high.
    Could be because of a supplement (like LDN, Folic Acid) some food does it for me too (like too much Mushroom). I was told by my POTS doc to drink water and a saltine cracker (I don't do the crackers because I am GF, I do something w salt, I have very wake up low BP 90/60). And it does get better quicker.

    Measure your blood pressure and your heart rate before leaving the bed. Since you mentioned the HR elevated if you do wake up, I see the same behavior as to be POtsy.

    I am no doctor just some things that work for me.
     
  19. HowToEscape?

    HowToEscape? Senior Member

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    Has anyone ever checked the prevalence of heavy eyes, in severity anywhere from 'markedly more than among the healthy' up to 'as severe as the OP of this thread' ?
    I had the impression it was a common ME/CF symptom.
     
  20. Cohen2

    Cohen2

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    I get this, I'm often straining to keep my eyelids open. Another symptom I've been having for months is trouble opening my mouth. Does anyone else get this?
     
    Last edited: Jan 2, 2017

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