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  • Something is very wrong - please help!

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    Old 06-27-2014, 02:23 PM   #1
    blueeyesal
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    Something is very wrong - please help!

    I have had ongoing symptoms for over a year now that have been unbearable. I am so tired I can hardly stand it and have zero energy, and just 2 yrs ago I was so energetic that I couldn't sit still through a whole movie! Now I sit still for hours on end feeling like I will fall asleep if I just close my eyes. I have gained about 40 lbs in the past year despite exercising almost every day for over an hour, and I have to MAKE myself workout even though I am this tired. I feel sick off and on like I have some kind of flu that won't go away, and randomly get nauseous out of the blue, but I luckily have a RX for Zofran which I take when the nausea hits and it helps immediately. I occasionally have fevers that spike in the middle of the night, up to 104.5 degrees. After taking a high dose of Tylenol my fever drops. My hair has been falling out for 3 years nonstop and no doctor has been able to figure out why. Also I haven't had a period in over 2 years, it just stopped for some reason and hasn't returned. I am 30 yrs old so too young for menopause. I have terrible insomnia and require sleeping meds and clonopin to fall asleep but I still wake throughout the night several times. I do have hypothyroidism but I am on meds for it and it is monitored every few months, and it hasn't changed. The thyroid problem has been there since the age of 15 and i never had all the other symptoms I have now so I don't believe it has anything to do with thyroid. I am not anemic and my vitamin B levels are great. My cortisol level is high and has been for a few years, I've seen a few different endos for this and none could find a reason as to why my cortisol is high and periods have disappeared. If anyone has any suggestions I'd greatly appreciate it because I am just miserable and am missing out on life.
    Thanks!

     
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    Old 06-28-2014, 05:20 AM   #2
    tess201
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    Re: Something is very wrong- please help!

    With ongoing symptoms as you describe you might consider Lyme Disease. You don't have to remember a tick bite. Blood sucking vectors other than ticks can also carry the bacteria for lyme. Only lyme disease specialist doctors can diagnose and treat for this (called LLMDs - lyme literate medical doctors). There is a lyme board here if you want to check out other stories similar to yours.

    Tess

     
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    Old 06-28-2014, 03:43 PM   #3
    blueeyesal
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    Re: Something is very wrong- please help!

    Quote:
    Originally Posted by tess201 View Post
    With ongoing symptoms as you describe you might consider Lyme Disease. You don't have to remember a tick bite. Blood sucking vectors other than ticks can also carry the bacteria for lyme. Only lyme disease specialist doctors can diagnose and treat for this (called LLMDs - lyme literate medical doctors). There is a lyme board here if you want to check out other stories similar to yours.

    Tess
    Thankyou so much for your advice! I had not thought about Lyme disease but that would make sense. I will check out that message board as you suggested. Thank you!

     
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    Old 07-17-2014, 11:14 PM   #4
    fordaisy
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    Re: Something is very wrong- please help!

    Have you had an EKG done to rule out heart problems?

     
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    Old 08-14-2014, 08:38 AM   #5
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    Re: Something is very wrong- please help!

    You may have Chronic Fatigue and/or Fibromyalgia. I've had both, dx for 14 years, but had both longer than that. An Infectious Disease doc will dx Chronic Fatigue and a Rheumy will dx FM. Sleep is key to both. Good luck and I hope you feel better!!!!

    Last edited by mod85; 08-14-2014 at 06:13 PM.

     
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    Old 09-07-2014, 10:37 PM   #6
    mystic888
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    Re: Something is very wrong- please help!

    I can tell You right now that Your thyroid is n o t working well at all...i bet on that
    that terrible fatigue, weigh gain ,hair coming out are just sure signs that Your thyroid needs help ....You may be staying at good range at med tests but I can tell You right its not working 4 u...the bad news is there is no easy fix with thyroid its a complicated ongoing process ...You have to adopt really healthy lifestyle ...do not eat processed food,gluten drink plenty of water with lemon juice fro example ,do not drink caffeine !!!!!!possibly do not drink alcohol cut on sweets ,grains big time.....paleo diet is ok...although I do like vegetarian diet big time. big fan of Gerson and Allelujah diet.....girl You need to research & read ...

    ......its Ur job to figure out whats wrong using lab tests ....You basically need to tell them what is wrong with You and then they may order some tests to confirm if they are in a good mood.....its a nightmare .... You have any money go to good holistic doctor where You can get thyroid ,liver support ,blood sugar,food allergies supplements and get educated about better health.....sure check lyme also but Your whole system needs a boost.......with gentle holistic approach....

    I had similar situation where Im on my own ....had to read tones of books watched 20 000 videos to educate myself about all of that stuff...

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    Old 09-14-2014, 08:51 AM   #7
    kalouise
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    Re: Something is very wrong- please help!

    I yop think it's your thyroid. All you symptoms point to a hormone disorder. I thought also anemia, but you don't gain weight with anemia. Still, check your ferritin. If you are deficient in vitamins, then your hormones won't function properly.

     
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    Old 12-05-2014, 02:02 AM   #8
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    Re: Something is very wrong- please help!

    This definitely sounds like a thyroid problem.
    How is your thyroid monitored? Only with TSH? Do you only take T4?
    Read 'Stop the thyroid madness', it will make clear to you which bloodwork you need and how optimal blood values can differ between individuals.

     
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    Old 12-11-2014, 05:52 PM   #9
    AgingWithFibro
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    Re: Something is very wrong- please help!

    Wow! This sounds like a horrible combination of problems.. so sorry!! Will your doctor do a complete blood workup on you?-- meaning tests that will at least rule OUT stuff-- like auto-immune issues, MS, inflammatory diseases, lyme disease, etc.? Without giving you my long sordid life story with fibromyalgia and now (since I'm getting older... 65!) all the problems of degenerative spine issues and osteoarthritis, I finally found a neurologist just in the past three months who ran all this blood work for me -- things I've wanted to rule out but felt a doctor would think I was a hypochondriac for asking about!! All these things came back negative, so nothing new that could be treated and make all this go away. But at least I know... Perhaps you have more than just thyroid issues. If you want an actual list of all the tests he ran, I can get that to you. In the meantime, I can't emphasize enough... find ways to be good to yourself, do you have a husband, friends, family who will help make your life easier when you feel terrible? I have spent nearly all my life without these kinds of supports, and should have made it more of a priority... I have suffered more than I needed to. Hope some of this helps?

     
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    Old 01-16-2015, 10:15 PM   #10
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    Re: Something is very wrong- please help!

    docs......i can't even get mine to call the neurologist for the consult that he suggested i see.....

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    Old 01-16-2015, 10:18 PM   #11
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    Re: Something is very wrong- please help!

    have them check your vitamin d level...it may not be the main problem but it sure contributes if it is low...good luck to u

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    Old 01-25-2016, 07:10 AM   #12
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    Re: Something is very wrong- please help!

    Your endo's first question before giving you your test results should be "how do you feel?" That is what mine does. She looks at my nails for ridges, my hair for dryness and my skin.

    If your cortisone is up they should check your pituitary gland, it works with your adrenals, they sit on top of your kidneys. There's a board on Addisons Disease, check it out, I have it but my cortisol is low.

    When producing too much I think it could be Hashimotos but not sure.

    Cathy

     
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    Old 01-25-2016, 03:45 PM   #13
    TomHey123
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    Re: Something is very wrong- please help!

    Hi I had chronic fatigue and recovered from it so I know how hard it can be. So I'll list some thing I did which may help you but defiantly try them.

    (Excuse the bad spelling)
    (Remember the mind has a lot of influence over the body and can help)

    1) see a dietitian or one of those people who can test you for food allergies
    You can develop gluteton sensitivity later in life and it is very common for people to be sensitive or even could be celia disorder. (I cut out glueton and it helped)
    Either way they will give good dietary recommendations and they see a fair bit of CFS sufferers

    2) Try something called the Wim Holf method, which combines forms of meditation, cold theophy and phyical exercise
    I found it very helpful and if you cannot afford it (something like 100 quid) I can lend you my log in.

    3) Superfood are generally very good for you such as Hemp is a extremely nutritional. Cut out all processed garbage keep it simple. I would probably lean towards organic.
    Also take multivitamin and Ginsing and consider taking 5-htp

    4) Yoga mat help defo try it

    5) Meditation

    6) look into something called Brain Entrainment (Binary Beats) the difference between Alpha , Theta and Gamma brain waves may have some application if you're brain only producing (Alpha or Theta) is brain activity of sleepy state where as listen to other frequency of beats can move you're state. This is still research coming out. Give it a try though

    7) Make sure you're Meletin and serotonin are properly regulate as this determin mood and can cause CFS

    8) Mindset is so important keep good mindset it may be hard not to get depressed, but depression can cause CFS
    So try to make you're self upbeat Especially in you're Subconscious mind.

    9) look for a cause and keep implementing changes into your lifestyle based on what cause it could be. Changing diet of celia

    Even if you don't find cause implement or at least try these changes. CFS is hard partly because NHS don't want to know and a lot of people don't care till they have it them selfs.

    But you should recover and you should do everything you can to promote you recover. Don't fret about losing time in you re life because of CFS as often we come out stronger on the other side.

     
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    Old 02-11-2016, 05:25 AM   #14
    aseratliag
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    Re: Something is very wrong- please help!

    Get tested for Lyme disease!. Extreme fatigue is one of the symptoms of this god awful disease. I have chronic Lyme and have flare ups starting with the chronic fatigue. I always know when I have it. Ask for a Lyme blood test to rule it out or possibly you may have Lyme. Hope this helps.

     
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    Old 03-11-2016, 06:35 AM   #15
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    Re: Something is very wrong- please help!

    Quote:
    Originally Posted by oxygirl View Post
    have them check your vitamin d level...it may not be the main problem but it sure contributes if it is low...good luck to u
    You are so right about vitamin D, My test came back at 12. Very low. I treated for it and felt so much better even with the osteoarthritis and fibromyalgia. It is so hard with both conditions at the same time. I was so drained. The vitamin d treatments was needed.

     
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