Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Please can someone help me?

Discussion in 'General ME/CFS Discussion' started by Sabrina90, Aug 8, 2017.

  1. Sabrina90

    Sabrina90

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    Hi everyone,
    Please can someone help me, I'm in a right state.
    I have had what I assumed to be a flare up for around 3 weeks now. I thought it was caused by going on holiday where the temperature was in the 40s and coming back home to the teens and then having a throat infection that lasted a week.
    But I've got so many symptoms and I'm getting worse all the time. Everyone's telling me to go to the doctors but I feel far too ill to go and be patronized again. I'm not new to this, I've had it over 6 years but this is the worst flare (if that's what it is).
    These are my symptoms:
    • Severe pain in back and pain in what feels like all my muscles and joints including feet.
    • Swollen glands in neck and sore throat
    • Headache
    • Dizziness and nausea
    • Extreme fatigue but struggling to sleep.
    • No concentration
    • Temperature fluctuates between 36.4 and 37.8 but I feel my worst at 37.2
    • Anxiety and tearfullness but I can't cry (if that makes sense)
    I just don't know what to do for the best and I desperately need someone to say... something to me xx
     
  2. notmyself

    notmyself Senior Member

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    hey,sorry for your hard time..but how can the doctor patronize you when you have visible symptoms like swolen glands,sore thorat,temperature?..maybe they can give you something to feel a little better..
     
    belize44 likes this.
  3. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    So sorry you are having such a hard time. I think you need to get yourself to a doctor to get checked out - maybe ask for some blood tests, and something for the pain. If you can get someone to go in with you to take notes of what the doctor says, maybe they won't be so dismissive. Good luck and let us know how you get on.
     
  4. jason30

    jason30 Senior Member

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    I get those symptoms when I am exposed to toxic mold!
     
    belize44 likes this.
  5. TenuousGrip

    TenuousGrip Senior Member

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    I doubt there's a member of this forum who hasn't felt exactly how you're feeling right now.

    And I'm sorry.

    Being invalidated and dismissed by doctors is a gut punch. Most of us have had that particular gut punch too many times to count.

    But sometimes we get 'sick,' too. I hope you'll do your very best with self-care, and that it leads you to improvement ... quickly.

    But if it doesn't, then I hope you find the strength to get yourself checked out.

    I wish you peace, health, and strength.
     
  6. sarah darwins

    sarah darwins I told you I was ill

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    Same here. Is there a chance you have mold in your home environment, @Sabrina90 ? It's something to check or get checked out.
     
    jason30 likes this.
  7. Invisible Woman

    Invisible Woman Senior Member

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    I agree with @trishrhymes . Take someone who knows you well with you. Docs tend to be a little more cautious with a witness.

    Also before you go take the time to sit with the person going with you and prepare for the appt. Make some brief but organized notes to bring so you can clearly identify the issues you want to address.

    In the UK your doc probably only has 10 minutes so the clearer you can be the better. Not easy with a complex issue. Some surgeries will allow you to book double spots for more complex issues.

    Ideally your wingman should be prepared to communicate on your behalf but only if you become too unwell to communicate yourself.

    Good luck with it.
     
  8. Basilico

    Basilico Florida

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    @Sabrina90 , I am so sorry you got hit with such a bad flare up...I don't know that any of this will be helpful, but I just wanted to throw out a few ideas that I've collected from this forum...maybe something will seem appealing and worth a try?

    FIR (far infrared heat - similar to a dry sauna). There are many threads on here about people using them to detox heavy metals, but also some people used them to help fight off infections. The principle behind it is "fever therapy". If you decide to try it, be sure to load up on water and electrolytes.

    Andrographis. I just learned about this recently, it's an herb that has been used for a long time in the East to fight infections. We bought this to have on hand for times when it seems like either my husband or I have an active infection. You can find this mentioned on several threads on PR. There seems to be a good amount of reliable research on it that convinced me it was worth trying.

    Cat's Claw
    also has antiviral properties. How much, exactly? I can't find specifics. There have been some studies using it to treat rheumatoid arthritis, and if I remember correctly, I believe it's also anti-inflammatory.

    Another thing to look into is Viruxan (aka Immunovir) - my husband buys this in Italy, I think it's over the counter (no prescription needed) but I'm not 100% on that...I'm not sure what country you are in, so I don't know if you can get it easily. He was taking it for several months because a CFS specialist instructed him to do this. It didn't make any improvement, but now he takes it occasionally when he feels like he might be coming down with something, and it seems to make a noticeable difference.

    Some people have also been using Artesunate. My husband and I both used it but didn't notice any improvement. However, neither of us likely have an accute/active infection. Artesunate is a very effective treatment for Malaria, and I believe Malaria treatment only requires a few days before improvement is seen.

    Also, monolaurin might be worth looking into - some have had good results with that.

    Another thing to consider would be IgG immunoglobulin supplementation to improve the immune system. I'm not necessarily recommending this particular product, but something similar to this is an example of what I'm referring to : https://www.amazon.com/gp/product/B0010ZJTM4/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1

    None of these are likely to be cures, but possibly some combination could help to promote recovery.
     
    notmyself likes this.
  9. belize44

    belize44 Senior Member

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    I agree! With visibly swollen glands, any self respecting doctor will want to know what's causing them!
     
  10. Sabrina90

    Sabrina90

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    Thank you all so much for you kind words and advice. My best guess is that it is an Epstein Barr reactivation but you're right. I need to muster up the emotional strength to see a doctor. I have seen a list of symptoms on here and I think I'll print it off and highlight the ones I have.
    I live in the UK. I don't have mould in the house but I know exactly what you mean because charity shops and some museums do cause my symptoms to flare for a short spell.
    I forgot to mention tinnitus too. It's a really pain and along with the swollen glands under my ear area it's affecting my hearing xx
     
  11. Jessie 107

    Jessie 107

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    I get these symptoms in a flare which I am having now.
    I always get a sore throat, swollen lymph nodes, nausea, muscles aching/twitching, headache all over feeling very ill, with no chance of concentration at all, and even though feel fatigued have trouble with sleeping while I am like this.

    Maybe the holiday and then a throat infection have caused a longer flare than what is usual for you, also even with just the throat infection it takes people with M. E longer to recover from a secondary illness.
    With lots of rest hopefully you will get back to your usual baseline.
     
    bspg, trishrhymes and Invisible Woman like this.
  12. bspg

    bspg Plant Queen

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    @Sabrina90 I'm so sorry you're experiencing such a nasty flare. I suffer from persistent EBV and when I'm flaring badly the only thing I've found that helps me is the attached brand of elderberry drops. I've tried other brands but none have worked except this one.

    It's only a temporary solution (symptoms come back when I stop the drops) but if I use them 4x a day during a bad flare, I can get through the day and do what I need to do.

    I hope you are able to get some relief and find a doctor who will help you! :heart:
     

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