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new symptoms emerging.

Discussion in 'Neurological/Neuro-sensory' started by justy, Dec 29, 2010.

  1. justy

    justy Senior Member

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    Hi all, in the main i have been feeling a bit improved since this time last year when i was very ill. I have been pacing and taking supplements and had a bigger improvement after seeing a McTimony Chiropractor for the past couple of months.

    However i have started having new symptoms and was wondering if these ones are M.E related or just me related.

    Wet eyes in the mornings so that i cant see properly for a while. My eyes often then stay sore all day and am fed up with having bloodshot eyes. Its not conjunctivitis have had that before. The rest of the day they also feel a bit dry or gritty feeling.

    the other symptom is very hard to explain and a bit disturbing. Its kind of like a weird feeling in my brain (it does feel like my brain not my head) its like my brain goes all vacant for a moment (not as in cognitive problems) and then it feels sort of popping like in my brain. i can also now feel it coming on and it lasts for only about half a minute now a few times a day. I make it sound like a stroke, its not that dramatic but very unnerving. Wish i could describe it better. Its a definate pausing and then some kind of readjustment. i know this sounds a bit mental.

    In general i am pleased about the improvements, but i am certainly not back up to where i was 2 years ago yet - still a way to go.
     
  2. free at last

    free at last Senior Member

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    Hi Justy, i have had re occuring itching in my eyes off and on a lot this last year, mostly one eye, not so much wet eyes though,
    As ive recovered over the years, i still get intermitent periods of what i can only describe as a very off kind of fluey feeing, or like a food posioning type of feeling, but mostly with out the severe nausea i used to get. Certainly no vomiting but a definate off ill feeling, that produces a very bright shiny effect to my vision, similar to the feeling just before some one faints ( i had it again tonight ) at these times i can often scamble my words a little, and forget words i know ( cant seem to remember those words ) i also go a little vacant, with a type of stareing, drifting off, daydreaming type symptom. Not sure if thats similar to what your describing ?

    A big deal for me still, is sleeping which often leaves me feeling real horrible for about two or three hours after waking, like the effect of sleeping itself is poisioning me.

    I know chemicals that produce deep sleep can do this, which is why people say they feel groggy in the morning, but this is like that. only more severe.

    sometimes i feel so drowsy i can not wake myself up, like im overdosing on this sleep chemical, which in turn feels like its producing the fluey posioned feelings that seem to improve the longer i stay awake. The weird thing is the feelings im describing are very similair to what i was getting when much more ill before this type of remission slowing came into my life.

    Only its of a strength and duration that is much much less, example i would have to lie down for hours at a time in the past, but now i can just tend to overcome it, by ignoring it ( not always easy ) its starting to feel lately that maybe i have the constant chronic symptoms that never ever go away, but the power and strength of them is so reduced, its like ive become de sensetized to them ? so dont notice them like i used too

    the visual brightness, shiny objects disturbance, ( my kitchen is a big one as its small and bright ) has seemed almost constant lately. i dont know justy really i dont. It all sounds nuts i know. But because i had such long periods of really quite poor health to compare these remission lingering symtoms too, Wessley can chew nuts FOR ALL I CARE OF WHAT HE WOULD THINK.
    Its reall, and im convinced is immunological, and chemical ( body chemical ) induced symptoms, as they are so similar to when i was much much more physically ill ?
    Not sure if you can identify with any of this ? but thought it was worth discussing and trying to explain, remission is not cure, we are marked for life i think, but the body seems to want to heal itself.
     
  3. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Hi, Justy,

    I have had something similar with my eyes. In the morning, they can be gooey, but dry and irritated the rest of the time. My eye doctor did a special test with dye, and said my corneas were severely abraded because of dryness. The surface of the eye was actually being worn away. Drops made things worse for me (I'm chemically sensitive and even the preservative free drops caused hemorrhaging), but I've seen on another thread that they help others. What helped me was taking Omega 6's, in which apparently people with ME/CFS tend to be deficient. This is worse for me in winter with the dry heat on. I also use a steam vaporizer in the house when the heater is blowing- it helps a little. I know it's miserable- I hope you can get some relief!
     
  4. justy

    justy Senior Member

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    There does seem to be a lot of discussion about eyes at the moment. I seem to have lots of different eye problems. I get severe eye pain, also blurred vision (always a sign my health is going downhill again) and now the sore, itchy, watery eyes! The problem is for me that i cant really approach my optician or doctor as they are both quite unpleasant and unhelpful. When i was trying to explain my eye problems to the optician before my M.E diagnosis (but after years of being ill) she just said it was cos i didnt wear my glasses for reading. However my reading glasses are at a very low prescription, and i can see ok without them. Maybe i will try her again, but when people are so unkind and hostile it just makes the whole thing worse and the stress always makes me feel more ill.
    Thanks for the reply. x
     
  5. justy

    justy Senior Member

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    Hi Free, thanks for your thoughts. I am not really well enough to call it a remmission yet. I did have a remmission for nearly 10 years at one point where i was more or less o.k and could lead a relatively normal life (although not normal if you where a sports fanatic or wanted to work full time and bring up a family)

    Now i have been at about a 25 - 35% on the Bell scale for the past couple of years, but am now approx 40-45% so feels like a big improvement to me, but nowhere near better. Sometimes i feel almost normal for a few hours at a time if i am sedentary. I have been able to walk a bit further and have enjoyed a few gentle strolls over christmas. Also the anxiety/panic feelings have reduced a lot which means i have started to go out a bit more and feel a bit more confidant.

    I understand the sleep thing - now my sleep is a bit better i actually wake up feeling worse. Like i have a hideous hangover and have been up all night drinking. The truth is i may have stayed up till 11pm and had an extra cup of herbal tea! This has been happening a lot recently, waking up aching all over and cant see properly and feeling sicky etc, horrible - although it wears off as the day goes on.

    The brain thing i am trying to describe is very strange and frustratingly hard to describe. It is very much like going vacant and then i think UH OH here comes the weird feeling (a bit like when you know you are going to get palpitations) Then i feel a werid feeling in my brain, then its all over, and i come back to feeling normalish again.

    I tend to agree now that remmission is not a cure. When i had my long remmission i thought i was completely cured forever, but now i really think it can always come back again. I also realise that i thought i was completely well but i wasnt really, i was like someone with very mild M.E. I could do most things others could, but always felt more "sensitive" or "delicate" i could never walk as far as others or drink as much alcohol or go without sleep. Another problem i had was that when i excercised with say running or swimming i would often get that feeling like im going to die feeling. And no matter how hard i tried, i could not get fit like others could , so i doggedly carried on pushing and pushing to be like everyone else until i ended up very ill again.

    I also believe it is immune/biologicaly based. I have had Mitochondrial testing that showed up quite a lot of abnormalities. Try telling that to my GP who keeps insisting that there is nothing wrong with my immune system. He has twice recently used the words "its not as if you are immunecompromised like a Diabetic or cancer patient" He then refused me antivirals for suspected swine flu, even though i also have asthma and a fibrotic band in my lung and have had Pneumonia and pleurisy in the past couple of years and have been treated with high doses of steroids for my lungs. It makes me so angry!!! I better stop thinking about that now or it will ruin ,my day. And then after youve been treated like this for years on end they wonder why you seem emotionally fragile and cry in the surgery(with frustration) and then they get the antidepressants out!
    Rant over.
     
  6. leaves

    leaves Senior Member

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    Hi justy
    Ive got the same eye problem and am going to try the omega 6 that was suggested.
    I've got a weird feeling in my head too, kind of "tingling" like someone is scratching from the inside ( can't explain it well) this lasts only a few secs. It is neurological. For me authia cream helps. Also watch out for b6 toxicity that can cause neurostuff
     
  7. justy

    justy Senior Member

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    Thanks Leaves, i have been taking VEGEPA (omega 3 and 6) for a couple of months. Also i dont take B6 at all as i had a very serious reaction last year to an SSRI antidepressant and was advised not to take it.

    I wonder if our brain thing is similar - yes must be neurological. What is authia cream?
     
  8. leaves

    leaves Senior Member

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    It is a cream with activated thiamin. You rub it on your inner thigh daily. Yes I wonder if it's the same, I used to have it in my feet too.
     
  9. lucy

    lucy Senior Member

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    I am not sure I was having the same, but I can describe it like this: while sitting at the computer, the room would start blurring and I feel like I am fainting, I turn around, close my eyes, 5 s and it comes normal. Or while reading something, the letters become blurred and I wonder why they were printed it so badly, then second later it becomes normal.
    Other thing I started to have was myoclonus, first only in legs - again sitting calmly in front of the computer and the leg jerks in the way it does when I sleep. Now I sometimes also have it somewhere in the head/spine, again it feels like I am falling and the knees are bending, as the head is relaxing into sleep. Doctor said it is low electrolytes to blame.
     
  10. free at last

    free at last Senior Member

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    Thank you for discussing this Justy, if i had any ideas on what to say to help you i would in a instant, it seems for the most part all i can do is act detective to compare our illness to see if patterns show, which might help us all in some way i havent yet figured how.

    Your symptoms to me, sound like what it was like for me, prior to a very slow remission starting, KEEP GOING JUSTY your improvements sound familiar to me

    i can identify with so much that you say that it verges on scary, and quite frankly amazing in the similair nature of some of our symptoms, what you have said here, has got me again. I dont always remember to point out certain problems, many subtle ones that i would rant for far too long. but im convinced its a important way of understanding whats really happening to us, and i think i know, you know thats what im really trying to do, Others i feel just think im selfishly ranting, and i agree it often feels like that TO MYSELF but my intention is to learn with people who ever is interested in learning this way.
    Ok the aching eyes, yep i forget to mention that, its become a big symptom, i often notice it more first thing after waking, if i rub my eyes i can feel the pain when i push. I also get headachs a lot, sometimes shooting pains that happen quite frequently. lately justy ( maybe the last year ) the back of my kneck is now starting with a really quite severe ach, feels like somekind of disease progression, I also often wake up aching all over, more my legs, both the muscle and joints, when the ME symptoms are worse so is the aching, i suspect your thinking yep ? something else is happening i cant lift my right leg very high when getting dressed, as i have a joint ( its not a muscle ) Pain. Now my arm joint is doing it, so when i lift my right arm i can feel a achy pain in the joint, due to movement. Strangly Justy this is just on my right side, as the joints in my left side seem to not be affected ( YET ) Noy sure if this is ringing bells with you ? Also my vision is failing, everything is getting very blury close up. Not so bad at distance but close up forget it. I have glasses for that which helps, but it feels like it is progressing, A eye pressure test i had, was right on the upper limit, and i was told to come back in a year to check it again, as normally a 2 year check was fine ( i havent though as i moved )

    your qoute here just rings true to me AGAIN lol

    I tend to agree now that remmission is not a cure. When i had my long remmission i thought i was completely cured forever, but now i really think it can always come back again. I also realise that i thought i was completely well but i wasnt really, i was like someone with very mild M.E. I could do most things others could, but always felt more "sensitive" or "delicate" i could never walk as far as others or drink as much alcohol or go without sleep. Another problem i had was that when i excercised with say running or swimming i would often get that feeling like im going to die feeling. And no matter how hard i tried, i could not get fit like others could , so i doggedly carried on pushing and pushing to be like everyone else until i ended up very ill again.
    End of qoute.
    I cant belive your GP acts like that when will this ever change, it is a crime. So did you actually have swine flu ? its rising now isnt it, and im a basket case, locking my self indoors, avoiding coughs from family members, my usual winter parenoid scared behavioir. If i get swine flu i feel i will die, pretty scared of that presently. Why the hell didnt you get Tamiflu? your doctor sounds really poor, And as for crying Justy, yes i did that too, and they ( GPs ) really dont get it,at all do they, they see it as evidence your depressed, HELLO YES IM DPRESSED ALRIGHT, IM ILL. Wouldnt they be depressed, stupid doctor. Swine flu nearly just killed my healthy and fit, with no underlying conditions Nephew he was in intensive care, with hes lungs failing. im also terrorfied for my family, my 12 year old daughter has to travel on buses, and is going back to school soon. Experts are saying when that happens more kids will get it. Just plain scared. how do others cope is beyond me.
    Anyway. dont feel like you have to reply Justy if your energy is low, i fully understand. But sounds like your doing a little better lately,its so great to hear you say that, keep pushing ahead
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Justy, that doctor is odd saying your immune system is not comprimised. Are you going to keep going to him?
     
  12. justy

    justy Senior Member

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    Im afraid i dont have much choice. We only have one surgery in our area (i live in a remote place) and i have been through all the doctors there except one. I am going to see him in January and put my case to him. I dont expect any medical help for my M.E in this country but a decent attitude would be good. Also i developed agoraphobia after being ill and havent been out on my own for over a year. This means i am very isolated and as my health is improving i am itching to get over this problem.

    I had 6 sessions of CBT last year and have been refused any further help with the agoraphobia, which is treatable. The NICE guidelines even say i should have treatment for this. So i have one last chance. If this new doctor isnt helpful i am going to write a letter of complaint. Its difficult though as i already have a complaint against my local hospital about my daughters health. She was ill for over a year with various problems including severe rectal bleeding and she was told there was nothing wrong with her - she was even bed bound at one point and had to leave school. She is a bit better now(although still bleeding and having regualr tonsilitis and stomach pain) but we still dont know what is wrong with her and they are refusing a colonoscopy.
    Thats another whole rant! it feels like some of us M.E patients in the U.K are at the point of exploding with how badly we are being treated. Cant take much more of it.
     
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I am sorry it is hard to get help there. A real shame.
     
  14. leela

    leela Slow But Hopeful

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    Justy, so sorry to hear that you are stuck with the crappy doctors. It's a horrible shame, and I hope it changes soon!
     
  15. sleepy237

    sleepy237 Senior Member

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    Hell
    There is a autoimmune disorder sometimes found in fibro sufferers called Sjogrens Syndrome, not sure if your symptoms may suggest that but 3CFIDS@ourhouse if your dctor did the strip test and found damage you may merit further investigation, also causes dry moouth.
     

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