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Unknown condition causing CFS

Discussion in 'General ME/CFS Discussion' started by findinglife, Jul 4, 2015.

  1. findinglife

    findinglife

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    Hi guys first post yipee,

    ok so I don't know where to start basically since I was 12 years old I've had uncontrollable body odor, fatigue, excessive sweating, weakness and brain fog. Interestingly my brother has had the same problems since he was 12.

    This basically suggests to me my problems are off a genetic or somehow inherited nature however my GP has refused to take me seriously so here I am.

    I am desperate to at least deal with my fatigue now as I have my body odor largely under control.

    My questions are as such:

    1. If my fatigue were due to some kind of rare genetic condition, autoimmune disease or possibly another type of condition could I still find help by taking supplements such as L-caritine, coq10, b12, d-ribose etc?

    2. What would you say is the best supplement or two supplements to take for chronic fatigue???? I am tight on money right now since I can't work in a stable job with this condition so I need to keep costs down.

    3. Lemon juice and apple cider vinegar often give me a burst of energy??? Why is that and how can I make the effect more long-term??

    thank you for your answers and I look forward to posting more questions and contributing to this forum
    about my experiences with the condition.

    EDIT:

    oh god in my absent mindedness I forgot one of my major symptoms.

    Extra wide hips and a wide lower rib cage. I don't know whats wrong with me medically speaking and I know I don't have klinefelter syndrome which is known to cause wide hips so if anyone can suggest what condition I may have thank you.

    sorry for the long post and thanks for reading.
     
    *GG* likes this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Chronic Fatigue can be due to any number of conditions not just ME/CFS.
    Perhaps you should see a Dr about ruling out some of these conditions. If they don't take the fatigue seriously you might want to suggest having your thyroid checked. It's better if you could find some underlying cause other than ME because there might be an easy treatment for the condition.

    Do you have other symptoms? From what you've written your issues sound endocrinological.

    ME is not the same as chronic fatigue despite the name.
     
    Valentijn, JaimeS, barbc56 and 2 others like this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I agree, you need to get checked out more thoroughly.

    This page has some info on body odour and excessive sweating.
     
    JaimeS likes this.
  4. findinglife

    findinglife

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    thank you for your reply guys.

    Other symptoms are joint pain and I bruise easily.

    the problem is my doctor won't take me seriously and i'm unfortunately a quite shy and not a very assertive individual.

    I'm not sure what my next step is i'm only 25 and this condition whatever it is has wrecked my life. I've decided to try coq10 and acetly l-caritine and hope for the best.

    I'm at my wits end now lost, tired and afraid and no one in the medical establishment is taking me seriously unfortunately. I've seen psychologists, doctors and various others but everyone says the same thing "your just naturally a tired person with body odor."
     
  5. SOC

    SOC

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    @findinglife, what country are you in? If they know where you are, people might be able to give you better suggestions based on what kind of testing and treatment is available in your country.
     
    MeSci likes this.
  6. redaxe

    redaxe Senior Member

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    I wouldn't start spending too much money on supplements until you know more. ME/CFS is not an easy diagnosis to make and you want to rule all the obvious things out first.

    Your best starting point is to find a doctor who is approachable and willing to help you. If you can't discuss this with your regular GP are you able to find someone else?

    Anyway some things obviously to check from a doctor are. If I've forgotten anything obvious someone please fill me in.

    Hormones
    -Thyroid function & iodine levels
    -Adrenal function
    -estrogen or testosterone

    Other tests
    -Iron studies (If low that suggests anemia. If high you need to investigate further to rule out Haemochromatosis also called Iron overload disorder. That is one genetic condition you should definitely rule out.)
    -Celiac test (this tests if you have an autoimmune reaction to consuming gluten)
    -Anti-gliadian antibody test can help determine if you're gluten intolerant (but not celiac)
    -glucose tolerance test (diabetes)
    -Magnesium & Zinc levels
    -Vitamin D
    -Vitamin B12
    -stool sample for gastrointestinal parasite test
    -ESR Test
    -C Reactive Protein
    -Serum creatine test (kidney function)
    -Liver Function Test & Serum Ammonia Test
    -Total IgE (general indicator for allergies)
    -Full blood count

    If that all comes up fine a next option might be to dig a bit deeper
    1) Seeing an immunologist may help you rule out any food allergies
    2) Sleep specialist can do a sleep study to test for sleep disorders

    Can you tell us more information about your symptoms and how it started. Was it a sudden onset - say after a flu or infection or do you always remember feeling that way.
    Also do you have irritable bowel syndrome?
     
    Last edited: Jul 4, 2015
    MeSci, JaimeS and helen1 like this.
  7. findinglife

    findinglife

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    for the poster above I'm in the UK and we have free healthcare but my GP and several others at the practice I attend won't even take me seriously suggesting I'm just lazy and everyone has body odor.

    As for the symptoms the body odor started when I was 12 however the fatigue has grown gradually until I'm at this point.

    I've had my thyroid testing, blood count, kidneys, liver, iron and they all came back normal. Basically I've had the standard uk blood test several times now and each time its come back normal. As for the other tests unfortunately my GP won't remotely take me seriously and keeps fobbing me off.

    I'm just going to give coq10 and l-cartinine a shot and hope for the best. I have no option right now I need to get back to working life ASAP.
     
  8. *GG*

    *GG* Senior Member

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    The burst of energy from acidic items, lemon juice an dapple cider vinegar, make me think you have low stomach acid, so when you take the items, they help you break down your food, therefore gives you more energy? I will be away for the day, it's the 4th of July here in the USA!

    GG
     
  9. Crux

    Crux Senior Member

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    Hi,
    Another possibility to consider is gut dysbiosis, SIBO, etc.

    For instance,body odor can occur when the microbes use choline from the diet, and make various compounds that cause various odors. ( could be sulfurous, fishy, or even just strong bo)
     
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  10. msf

    msf Senior Member

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    I don't want to be Mr.Obvious, but the fact that both you and your brother both developed the symptoms at age 12 suggests it has something to do with puberty - perhaps you should look into hormones?

    Ah, I see Redaxe suggested hormone testing.
     
    JaimeS likes this.
  11. IreneF

    IreneF Senior Member

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  12. msf

    msf Senior Member

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    Maleness?
     
  13. out2lunch

    out2lunch Senior Member

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    Yup. That was the beginning for me and my subsequent path to fibromyalgia and then ME/CFS. I had terrible body odor in my teens, along with painful periods and gut issues. Many years later in my twenties, hormones were found to be screwed up. Docs determined I had developed endometriosis and candidiasis in my teens which lead to gut dybiosis and a host of other problems that snowballed into severe symptoms as an adult. The fibro more than likely started in my teens as well.

    If you can find an endocrinologist who understands fibromyalgia and its related problems (like hypothyroidism), you might get the answers you're looking for.
     
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  14. out2lunch

    out2lunch Senior Member

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  15. JaimeS

    JaimeS Senior Member

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    If it started at 12 for both of you, very good chance hormones are screwy. Co-Q10 may help with your energy levels, but it can't help with profound hormone imbalance. Find a good endocrinologist and start by discussing not the symptom that worries you most, but which symptom sounds the most serious. We've had discussions on these boards the dance you have to do to get taken seriously, and that's going to include presenting your case like a lawyer. Don't mention being fobbed off by other physicians - talk about how it's a long-standng issue, but now you feel it's growing worse and worse. An endocrinologist has heard this story a lot more often than other kinds of docs and is, in my experience, more likely to take you seriously than a GP to whom 'tired' usually means, 'you should get some more sleep, maybe'.

    -J
     
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  16. findinglife

    findinglife

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    yes I also believe hormones are the issue anyway thanks guys I'll look into everything you've said. very helpful :).
     
  17. redaxe

    redaxe Senior Member

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    Yeah I think an endocrinologist is a good step to make. Take your blood work in and maybe they'll run a lot more tests and pick something up.
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    You can check out other GP practices here. I had to change practices after trying almost all the GPs at my local one.

    If you can't get a referral to an endocrinologist, you may be able to find a private one here. Specialists usually prefer a GP referral, but some will take people without, I think.

    I realise that money may be an issue. It is for so many of us.

    Good luck. Hope it's something that's easy to fix.
     
  19. Shesh

    Shesh

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    I agree with Crux. It sounds like you are suffering from SIBO or small intestinal bacterial overgrowth and possibly even leaky gut. There is a lot more research being done and showing the connection between alot of autoimmune diseases (including fibromyalga) and an imbalanced gut. There's no cure for now but alot of the treatment protocols to manage symptoms entail taking antibiotics either pharmaceutical or herbal, eating low fodmap diet, supplements to help rebuild your gut, exercise, and ways to limit stress.

    I hope you find the root cause of your issue. I know first hand how socially debilitating it can be to have body odor despite clean hygiene. I'm still battling my demons (methane dominant SIBO which has lead to IBS-C...the hardest of them to manage ) but I do see brighter days ahead.

    Hope this helps. By the way you can test if you have SIBO through a breath test.

    Best of luck and remember...you matter.
     
    Crux likes this.

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