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    Old 05-04-2004, 09:46 AM   #1
    jonp
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    Unhappy what the hell is going on

    i have been ill now since November, and i have spoke to some of you guys before on here.

    At first i had a virus, which i dont know whether i still have or whether its gone now. I am getting better, but really really really slowly. I have noticed that the lightheadedness and dizzyness seems to be slowly decreasing, and i can deal with going to busy places when i feel ok, which i could not do before. Was the dizziness the thing that went first for you guys too?

    The thing is i have not yet been diagnosed with anything, i was meant to go to London to see an inner ear specialist, but i think there is no point as i have been doing balance training at my local hospital, and my balance seems fine.

    I seem to be Ok for most of the time, but its definately something to do with fatigue though. I never feel like myself, im always weak.

    The thing is i do remain quite active. I dont sit at home at do nothing, i can drive, walk, and i have played football twice in the last month. Around Janruary i could barley walk around my estate, never mind play a game of football. For the past 3 - 4 weeks i have felt very good. The longest peroid i have felt good for. I actually played football last night, and immediately afterwards i felt awful. I was dizzy, weak and anxious. I just wanted to go home, but i battled it and went to the pub with my mates. The horrid feelings only lasted about half an hour and then i felt alright afterwards. I feel really tired and weak again today, and thats what makes me think its CFS. The thing is the fatigue usually lasts for about 2-3 days after exercise, and not a matter of weeks. Does this suggest a quick rate of recovery?

    Would a person with CFS after 6 months usually be able to these kind of things? Im just trying to work out what the hell is going on as the doc's cant seem to be bothered doing anything for me. Im quite positive its some kind of fatigue problem, but there are so many things to rule out and i just don't have time to sit around. I think i am goign to lose my job too as they have been very very patient.

    anyway can any of you guys help.

    thank you,
    jonathan

     
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    Old 05-04-2004, 10:07 AM   #2
    sammikins
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    Re: what the hell is going on

    hey
    everyone with CFS is different so dont go too much on comparing yourself to others. I have been ill 18 months, and am now around 85% on the ayme scale. I can walk, drive etc but pob wouldnt be able to play footie! I find sometimes the same as you that if i do some osrt of physical activity i am very bad for a couple hours, then improve a bit, but i know if i overdo it i will feel the effects at least the next day n usually a couple more days!

    i did have bad dizziness on sitting and standing for the first 3 weeks i was ill with suspected g fever, but that cleared realitivtly quickly. What other symptoms do you have?

    where abouts in england are you, im in dorset, but i could try and find the name of a specialist in your area via the aymers (association of young ppl (under 26) with ME or CFS) then maybe ask your GP for a referral.

    hope this helps, if your improving try not too worry too much and very slowly increase your activity! just be careful not to overdo it and relapse! improvement with CFS is slow unfortunately, but it sounds like you are doing really well whatever you have!
    s x.

     
    Old 05-04-2004, 10:16 AM   #3
    jonp
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    Re: what the hell is going on

    thanks, im only 21, well 22 this month.

    My other symptoms are:

    -dizziness, lightheadedness, balance prob's
    -sore / tired eyes
    -depression and mood swings
    -bladder/kidney trouble
    -ear ache and tinnitus
    -headaches almost everyday
    -weak / fatigued muscles - especially in my legs
    -used to get pins / neeedles in my legs and arms, but that has not occurred for about a month now.
    -struggle to find words after exercise (mainly)
    -lack of concentration
    -poor(ish) memory
    -absolute rubbish sleep quality - only in the past 5 weeks. Before this the only thing i did was sleep!
    -brain fog feeling / spaced out feeling
    -anxiety / panic
    -frustration


    PS i am in the North-west - Lancashire. I have been seeing an ENT specialist, who is now going to refer me to a post-viral specialist. But i dont know his name!

    Id appreciate it if u can give me the name of some good doc's up here who deal in the area of fatigue!

    thank you

    Last edited by jonathanp; 05-04-2004 at 10:23 AM. Reason: missed out something!

     
    Old 05-04-2004, 10:20 AM   #4
    sammikins
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    Re: what the hell is going on

    well it sounds very much like you have CFS, look up AYME on the net i dont think im allowed to give out theyre website but it will help you a lot, it speshly for 4-26 yr olds and has a message boards for members, and lots of info. where bouts in england are you?
    s x.

     
    Old 05-04-2004, 10:24 AM   #5
    jonp
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    Re: what the hell is going on

    PS i am in the North-west - Lancashire. I have been seeing an ENT specialist, who is now going to refer me to a post-viral specialist. But i dont know his name!

    Id appreciate it if u can give me the name of some good doc's up here who deal in the area of fatigue!

    thank you

     
    Old 05-04-2004, 12:32 PM   #6
    jas333
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    Re: what the hell is going on

    When you say you had a virus, what were the symptoms? Were they gastrointestinal (diarrhea, nausea, etc)? Do you have jaw pain? If it's gastrointestinal, it could be parasites or some other kind of intestinal bug.
    (which are hard to diagnose). Ear and jaw pain can cause dizziness. Also stress can create these same symptoms. Hard to know what came first: the symptoms or the stress then the symptoms, or both. Hope you can figure it
    out. Good luck.

     
    Old 05-04-2004, 12:58 PM   #7
    jonp
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    Re: what the hell is going on

    Quote:
    Originally Posted by jas333
    When you say you had a virus, what were the symptoms? Were they gastrointestinal (diarrhea, nausea, etc)? Do you have jaw pain? If it's gastrointestinal, it could be parasites or some other kind of intestinal bug.
    (which are hard to diagnose). Ear and jaw pain can cause dizziness. Also stress can create these same symptoms. Hard to know what came first: the symptoms or the stress then the symptoms, or both. Hope you can figure it
    out. Good luck.
    hi,

    no my symptoms whilst i had the virus were:

    -tingling in the back of the head
    -severe headache
    -stayed in bed for a week - just slept all of the time!
    -severe fatigue - stuggled getting out of bed
    -severe dizziness and balance problems
    -felt like i was in a dream
    -confusion
    -anxiety
    -tiredness
    -severe brain fog
    -sensitive to light
    -stiff kneck

    these lasted for about 2 - 3 weeks and then i started getting better and the tiredness/fatigue and dizziness just settled in and never went away.

    J

    Last edited by jonathanp; 05-04-2004 at 12:59 PM.

     
    Old 05-05-2004, 05:24 AM   #8
    sammikins
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    Re: what the hell is going on

    ok asked on ayme, apparantly there is a serious lack of docs in north west area! most ppl travel two hours down to seacroft hospital in leeds?(prob spelt wrong) or go to liverpool or north manchester. do you have health insurance, cos you could look for or ring up your local/nearest private hospital and ask if there are any specialists
    s x.

     
    Old 05-05-2004, 08:57 AM   #9
    jonp
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    Re: what the hell is going on

    Quote:
    Originally Posted by sammikins
    ok asked on ayme, apparantly there is a serious lack of docs in north west area! most ppl travel two hours down to seacroft hospital in leeds?(prob spelt wrong) or go to liverpool or north manchester. do you have health insurance, cos you could look for or ring up your local/nearest private hospital and ask if there are any specialists
    s x.

    yeah oi have private insurance, the specialist i am going to see is in Rochdale, which is kind of north manchetser. Manchester itself is only 20mins away from me anyway, its where i work.

     
    Old 05-05-2004, 08:58 AM   #10
    jonp
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    Re: what the hell is going on

    well the ENT i am seeing is referring me to one of his colleagues who is a post-viral specialist soon.

    Last edited by jonathanp; 05-05-2004 at 09:01 AM. Reason: duplicate

     
    Old 05-05-2004, 11:59 PM   #11
    AZDeb
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    Re: what the hell is going on

    Ever considered it being Bacterial based??
    Look at my other posts on Antibiotic Treatment.

     
    Old 05-09-2004, 08:31 AM   #12
    Batmanfan1
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    Re: what the hell is going on

    Quote:
    Originally Posted by jonathanp
    thanks, im only 21, well 22 this month.

    My other symptoms are:

    -dizziness, lightheadedness, balance prob's
    -sore / tired eyes
    -depression and mood swings
    -bladder/kidney trouble
    -ear ache and tinnitus
    -headaches almost everyday
    -weak / fatigued muscles - especially in my legs
    -used to get pins / neeedles in my legs and arms, but that has not occurred for about a month now.
    -struggle to find words after exercise (mainly)
    -lack of concentration
    -poor(ish) memory
    -absolute rubbish sleep quality - only in the past 5 weeks. Before this the only thing i did was sleep!
    -brain fog feeling / spaced out feeling
    -anxiety / panic
    -frustration


    PS i am in the North-west - Lancashire. I have been seeing an ENT specialist, who is now going to refer me to a post-viral specialist. But i dont know his name!

    Id appreciate it if u can give me the name of some good doc's up here who deal in the area of fatigue!

    thank you
    I have had the same symptoms since January, except for sleeping, I do that quite well. I was on antibiotics 6 times in 10 months last year, and I believe this was the source of my troubles. I have been thinking that I may have a Candida yeast overgrowth from antibiotics killing friendly bacteria in my system. CFS is my only other option. Any advice?
    Thank you!

     
    Old 05-10-2004, 06:59 PM   #13
    AZDeb
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    Re: what the hell is going on

    You definately have to watch out for Fungus type infections when doing antibiotic therapy. I take Diflucan as well as take other antifungal herbal remidies. It is a balance that has to be carefully watched. Some people are more prone to fungal infections than other. If your one of them the Antibiotic therapy can cause other infections (fungal typically). What antibiotic were you on? I will say that they differ much more than I thought ... My doctor and trial and error taught me that.
    Let me know
    Deb

     
    Old 05-11-2004, 10:43 AM   #14
    gregonzola
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    Re: what the hell is going on

    Hey Jonathan
    Looks like you and I have the same symptoms. It sucks! It's really a drag.

    I unforatunately don't have a solid diagnosis yet, but here's a diagnostic tool you might look into. I did an elimination diet, where you eliminate a bunch of potential fatigue causing foods for a while, and then easing back one at a time. In doing this, I found that Sugar crashes me like crazy. It's a big hassle to do the diet, but knowing what foods worsen the problem has been helping me to stay steady. There's info about an elimination diet on the CFIDS association website. Now that I've seen that sugar causes it to get worse, My Doc and I are looking into candia as a possible cause.

    Good luck
    Greg

     
    Old 05-11-2004, 04:10 PM   #15
    jonp
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    Re: what the hell is going on

    Quote:
    Originally Posted by Chrisgj
    You sound like you may have an adrenal insufficiency.

    Too learn about it and how the adrenals work, search these words

    adrenal insufficiency
    adrenal insufficiency asthma
    adrenal insufficiency IBS
    adrenal fatigue
    Chronic fatigue symptom adrenal
    Addison's tremors
    Addison's shaking
    Addison's anorexia
    Addison's stress
    adrenal stress
    low cortisol
    low cortisol PTSD
    adrenal ptsd
    Addison's PTSD
    ACTH stimulation test

    If you think this is your situation, then get this book as soon as you can

    Adrenal Fatigue The 21st century Stress Syndrome James L. Wilson
    N.D.,D.C.,Ph.D. (I consider this one the bible for the adrenals)


    You should also look into hypothyroidism. Stress from illness can bring down the thyroid too.

    Chris
    ive had a blood test for my thyroid? will this show hyperthyroidism?

     
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