Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Totally fed up

Discussion in 'General Symptoms' started by FEDUPJ, Jun 10, 2010.


    FEDUPJ Guest

    I have just come across your forum. Hope to find some good news on here.

    I first started to feel ill about 7/8 years ago. Had a total crash slept for a month, flashing lights, pain in right eye, swollen eyelid. Pulling sensation in corner and sore etc. Was told after various blood tests and seeing several doctors, eye, ear nose and throat etc that it was blepharitus and that it would go away. Vision blurred never really got back to normal. Was told I had horners syndrome in right eye.

    Nov 2007, feeling so tired etc and many other symptoms, saw a private Dr, who told me I had hypothyroid, but he could only give me herbal supplements to help.

    Dec 2007, had a cold which took longer to come out than it acutually lasted, a few weeks later I thought I was coming down with flu, slept again solidly for a month, however this time the eye problems are in my left eye. Vision awful, terrible pain in eye, sticky dry feeling, eyelid swelled and went dirty brown colour, saw my GP who said as I had seen an Voodoo dr (re nov) he would not treat me. So I looked for another Dr.

    Since then I have been pushed from pillar to post at varous drs and hopitals here in the UK. Eye Dr's, ear nose and throat, Endo's. Load of blood tests (some even going missing 22 viles in all). Only to be told this Jan that I have possibly FMS and CFS. And basically to go away and get on with it and I was discharged from the hospital. I was rushed back to the eye clinic in January of this year, only to be told that he does not have a clue what it is, so I will be discharged, however he has noticed that I could have horners in both eyes now (something I was told years prior could not happen).

    I have bad weeks, my eyes this week have started to play up again. I have spent thousands on glasses, the last time being last week. I have been back to the optician who got rather annoyed with me and shouted saying that he could not work out what was wrong and that it could be CFS. As I'm not being treated or seen by anyone I feel totally alone.

    I have not been able to work since 2002, without my elderly parents I would have been out on the streets, I don't know how long I can carry on like this, the vision part to me is the worse. When your worn out and your vision is out what the heck can I do. I'm only in my mid 40s and I cannot envisage me carrying on with the rest of my life if I have to spend it like this, unable to work, and earn money, and have no life what so ever.

    I have lost my husband to be due to this and close friends. Any help would be appreicated.

    I just want it all to GO AWAY
  2. JT1024

    JT1024 Senior Member

    Hi Fedup!

    You'll find many people on this forum have histories similar to yours. Most have lost large parts of their lives to ME/CFS/FM. We are all here trying to help one another learn about our illnesses, find competent physicians (very rare), and find hope and possible a cure.

    Take time to look around all the different topics. There is a wealth of information and many supportive people.

    Thanks for posting! ~ JT
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia

    I can't help with all of your issues but I can tell you that I understand some of what you are going through. Many of us on these forums don't have anything like what most would consider a normal life, and eye problems are common in CFS although I don't know that much about it. If you do have CFS, then part of the problem might not be your eyes but how the visual cortex is interpreting vision. In my case I often have periods when I can see perfectly well (the image is there) but I can't work out what it is. I could get a million new pairs of glasses and it wouldn't help me with this, the problem is neurological. Is your problem potentially like this, or is it something else entirely? Just for the record, I also get pain in my eye, seomtimes severe, sometimes sharp and sometimes throbbing. I think this is vascular or immunological. When I am particularly tired (about four hours a day) my vision blurs, I think this is because I lose capacity to focus correctly, and if so then this is either muscular or neurological.

  4. Xander


  5. camas

    camas Senior Member

    Welcome to the forum, FEDUPJ. There are others from the UK here, and we've all read just how tough it is to get help there, but maybe some of them will be able to point you in the direction of a halfway decent doctor.

    Sorry to hear about your eye problems. As I sit here typing through blurriness, I can empathize, although mine are not quite as bad. As Alex said, it's a fairly common CFS issue and is probably neurologically based. I have four pairs of glasses with different prescriptions, including a brand new pair of pricey progressives, but at the moment none of them are helping me see this darned screen.

    I hope your eyes cooperate long enough for you to do some reading here. It's a great resource. I hope you find some help.

    FEDUPJ Guest


    Thank you everyone so far for replying.

    Camas do you ever have the feeeling that you want to pull your eyes apart. I feel that my vision isn't going into my head properly.

    I have problems seeing the whole picture, like peoples faces.

    I have upset my optician yesterday as I had to take my new prescription back, 45 years of age and I was spoken to as if I was a child who had been naughty.

    Is anyone being treated for CFS as I seem to have had nothing as yet.
  7. camas

    camas Senior Member

    I haven't had the feeling of wanting to pull my eyes apart, but I do find myself blinking a lot to no avail. Here's an article that you might find helpful. Maybe you could print it out for your optician. :Retro smile:

    FEDUPJ Guest

    Thank you for that Camas,

    I would love to take this along to my optician, but I don't think it would do me any favours as I was told by him on Wednesday tha the was the optican not me when I was trying to explain things to him. He couldn't understand how one minute my eye was focussing through one lens that he used and the next I couldn't see things through it. He does not ant to see me again as he says I will have to try and get on with the new lenses as he will not do anything more than what he has already done.

    Pain has been really bad in the corner of my eye tonight, it feels very stiff. According to the above said optican its because on "tonus". He says how I see now is how I wil see the rest of my life. I'm feeling at the moment that I hope my life isn't too long.
  9. camas

    camas Senior Member

    I'm sorry you are having such a struggle with your eyes, FEDUPJ. Would it be possible for you to get a second opinion? I know that's easier said than done when it's hard for us to get out and about, but there was a link at the very bottom of that article for the Neuro-Optometric Rehabilitation Association. Maybe they could help in some way?
  10. That link Camas gave you is a good one and accurately describes my eye problems. I haven't heard of anyone with CFS/FM with eye problems like yours. Of course, you would be the best one to tell if that description on the link sounds like you or not.

    It's possible that you could be misdiagnosed. Like Xander said, maybe you have MS. However, I don't know enough about MS to say if you do or not. But what you have described doesn't exactly sound like CFS/FM to me.

    If you have dry, gritty eyes, you can try high dose pharmaceutical grade fish oil. It really helps me a lot. High dose would be 4 grams and above. I take 12 grams. Make sure it's pharmaceutical grade or at least molecularly distilled so there isn't any mercury in it (due to our polluted oceans).
  11. *GG*

    *GG* senior member

    Concord, NH
    I can relate to this, sometimes I want to rip my head/neck off! I awoke this morning with an injured neck! The 2nd time in 2 weeks! Ugghh
  12. Sunday

    Sunday Senior Member

    Any chance you could go to another optician, one who might be willing to learn about our peculiar (and I do mean peculiar) eye problems?

    Doing Freddd's protocol at Hidden Story has helped with my eyesight. It's a long thread, but you can get the basic info you need in the first 3 pages.
  13. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    Welcome fed up

    There are lots of nice people here - all here for each other.

    It doesnt sound like your problem but I know of 2 that have gotten herpes in the eyes - just to be aware. When my eyes have gotten really bad I've gone in to rule it out. Its kind of funny - my gp is an oby and only took me on out of the goodness in his heart, he is always telling me he knows nothing of cfs but when i asked about herpes in the eyes he said "oh Ive seen lots of those" he is from Africa and saw many with HIV and herpes in their eyes. I particularly noticed his attitude when he could be helpful as usully I dont think he feels good about not being able to help me. We are difficult patients

    I gave up on prescription glasses and just use magnifying glasses now and sometimes another magnifier. I also use a ruler while reading across the lines as I cannot sometimes focus on one line. When someone waves at me I just wave back not knowing who it is, as I have to actually stand still and stare and focus to see who it is. My eyes usually test normal when sitting in the chair and staring at the letters.

    Make sure that you get everything ruled out, everything doctors know of.
    you can find lots of help here little things all add up. This illness is very difficult to live with and we need all the help we can get

  14. hensue

    hensue Senior Member

    I am one of those who get the swollen eye it is very dangerous. It is the herpes in my eyes and the Doc tells me I can go blind very quickly. I dont think that is your problem. Are you having balance problems?
    I do have a lot of vision changes all the time. Some time I see perfect but like the rest I have prescrip for driving and closeup and one for computer.

    I am with another person on here you sound like best friend who has MS. Have you been checked for it?

    Then again we have days we can spell and days we cant. So each day brings something different.

    Welcome to the fourm fed up. You will find some especially nice and smart people on the forum. They all seem to really care about each other because we are all in the same boat.

  15. sleepy237

    sleepy237 Senior Member

    I am sorry this illness has fallen upon you and when you say I just want it to go away I totally feel the same way. I live in the UK too and i know how little understanding and treatment there is for us here. I also know how other people, friends family can't understand and I am sorry to hear you lost your husband to be. I just keep trying to keep hold of hope, that even if the illness doesn't go away, that I will adjust enough to live a better quality of life with it. Big hugs, you aren't alone xxxx
  16. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi Fedup.
    Thou not like yours (your issue sounds a lot worst), i've had some eye issues too with the CFS, eg conjuctivitis at times, blurring vision and also eye pain (like pressure coming from behind and inside my eyes). The pain at times made me want to rip my eyes out, they were also stinging, itchy and weeping a lot at times (even when i didnt have conjuctivitis).

    One thing which was interesting in my case is i was meant to go and get glasses (but put it off for 6mths-1 yr, as i was mostly housebound at the time and just too unwell to go back). i was told that my eyes were worst than my opticians (he wears horridly thick glasses, he was stunned i hadnt had my eyes checked earlier as my vision when tested was so bad). When i finally went back to get the glasses sorted out, i found out my vision had gone perfect. He said that had never seen that happen before.

    I dont know why my sight came good but one thing which was different, is that i'd been put by my specialists onto a heap of supplements, multivitamins etc for the CFS so all i can figure out is that the supplements fixed my sight (improved my circulation or something????).

    So keep in mind that vision can change all over the place with CFS... so at times getting the right lenses could be impossible.

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