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Worse year by year

Discussion in 'General Symptoms' started by CatherineF, Apr 11, 2013.

  1. CatherineF

    CatherineF

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    I would like to say hello to everyone here because I am new.

    I've been struggling with CFS symptoms for few years. It all started 8 years ago with severe insomnia, depression, brain fog, that from that time is always with me. Year by year my fatigue level, my brain fog and many other symptoms (like POTS) got worse. Right now I need to lay in bed for few hours a day to have some energy to do simple things.

    I don't know how can I stop this downward spiral, I am scared, because if things are going to progress like this I will end up bedridden, and eventually dead.

    I suspect few things that lead me to the place I am now:

    *I have huge problems with sleep, suspecting UARS, but since I couldn't sleep in a sleep study it is still undiagnosed. I have mandibular advancement device and CPAP machine, MAD doesn't help at all and I am not able to sleep with CPAP. Additionally I often suffer from insomnia and fragmented sleep. Always exhausted in the morning.

    *Nutritional deficiencies

    *Toxins in my body

    *Cavitations from extracted teeth (2 for orthodontic reasons, something that caused my UARS, one because it was root-canal)

    *Chiropractic misalignment, TMJ, small scoliosis

    *Loads of stress in the previous years of my life (including toxic family when I was a child)

    I would like to ask, whether you have such situation that disease progresses so quickly, is this going to lead me to death? I am 24 only and have so severe level of exhaustion that all my family and friends don't believe me. They don't think I am lazy, because I am really trying hard to manage many things, but I am not able anymore. I am going to adress issuses I mentioned above, but so far nothing works (healthy diet, supplements, more sleep and bed rest). I am glad I found this forum, I hope to find help and good advices in here.

    PS. I am sorry for my english, it is not my first language, I am from Europe.
     
  2. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Hi Catherine,

    Welcome to the forum. BTW, please don't worry about your English. As somebody with CFS, your English is very good, even if it was your first language. :thumbsup:

    There's so many things we're all trying to sort out here, but I think your knowing about cavitations in your mouth could be a big factor for you. Some here who have addressed their own oral infections have experienced significant improvements.

    Again, welcome to the forum. I hope you can find some good information here to help you. You're still so young, and that bodes well for you if you can identify some of your more significant issues. And this forum has the potential to help you do that.

    Best Regards, Wayne
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Welcome to the forum CatherineF

    As you read here you will hear our stories and symptoms. Many have found treatments that at least keep this illness from progressing--and some of us have also found improvement. There is a lot of new research so, even though it may take time, I tend to be hopeful.

    Different treatments affect people differently so if you can find a doctor who is knowledgeable and willing to work with you according to the latest research on possible causes and treatments, that would be good.

    If you would like to mention what country you are in, someone may know of a doctor near you.

    Best wishes,
    Sushi
     
    Wayne likes this.
  4. CatherineF

    CatherineF

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    Thank you Wayne and Sushi, I will keep reading. I am from Poland and in my country it is impossible to find a doctor specialized in CFS, let alone the one diagnosing it! So I am on my own and I have to research on my own. Basically I have to take care of myself somehow.

    If it comes to cavitations, I am not going to find a doctor either, you know that this is new concept. I wonder whether Nutritional balancing Program by dr Wilson would really adress it... I've also found other natural ways to use for cavitations, but I realize it would not be enough.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    CatherineF

    Are you able to travel to another country to see a doctor?

    Sushi
     
  6. Tristen

    Tristen Senior Member

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    Hi Catherine, welcome, but so sorry you have to be here.

    As you likely already know, the number one thing you can do to prevent me/cfs disease progression is to stop the push crash cycle; stop all stress possible. I'm sure that my lack of knowledge on this is the primary reason I went on into severe. I was mild-moderate but had kept trying to function at my normal level with work, etc, having crash after crash, until I ended up severe bed bound.

    The UARS is listed on the CCD that needs to be ruled out for me/cfs diagnosis. I would pursue that more. Lack of sleep affects my symptoms quite significantly. Yea CPAPs suck, but keep trying.

    8 years in is fairly new and because of this, your shot at recovery, or at least arresting disease progression, is better for you. Take care of yourself and keep the hope that tx is close at hand, because it is.
     
    Wayne likes this.
  7. Creekee

    Creekee Senior Member

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    Hi Catherine,

    Sorry to hear you're doing so poorly. It's scary to be in that downward spiral, I know. But you've found a great forum here. These are the smartest, most ME-knowledgeable people anywhere. And they are very generous in sharing that knowledge. I've learned so much from them.

    I hope you find some answers here and start feeling better soon. Meanwhile, a big welcome!
     
  8. SickOfSickness

    SickOfSickness Senior Member

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    Welcome.

    Sorry you don't have supportive friends and family. That is a very hard part of the illness.

    Even in countries with better doctors, most of us have to do our own research.

    Some people become bedridden but improve and get out of bed. So don't give up hope, but try not to do more every time you have a small improvement. That can lead to getting worse later.

    I think the worse levels of insomnia is a result of getting sick, instead of a cause. Maybe it is one smaller cause for some people, but I think it's mostly a result.

    For cavitations and toxins, read about oil pulling.
     
    Wayne likes this.
  9. Old Salt

    Old Salt Rowing the boat

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    Hello Catherine, In my case,I have found the supplements, Hawthorne, fish oil and magnesium, helps with my breathing at night. I just started with diotamateuos earth, I hope for good results. I believe the symptoms of CFS are mostley from toxins in the gut. Many of us have delayed reaction to wheat products. Must avoid sugar.
     
  10. caledonia

    caledonia

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    Hi and welcome to forum. My sister uses a different kind of CPAP called a nose pillow. She couldn't use the regular kind, but this works well for her.

    I think I would start with that and addressing the cavitations.
     
    Tristen likes this.
  11. CatherineF

    CatherineF

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    Sushi: I may be able to travel to UK to look for help with cavitations, can you recommend any doctor from UK?

    Tristen: thank you for good advice, I have huge problems with this, because I am not used to being in bed for so long every day. Sometimes I feel that any activity drains me and I don't know how to pace myself.I will keep trying with CPAP of course, it is very important.

    Creekee: thank you very much :)

    SickOfSickness: you're probably right with insomnia, it is worse when I crash, when I feel intoxicated, the more exhausted I am, the less sleep I can get. Thank you for a suggestion about oil pulling, I will do this.

    Old Salt: I am taking few supplements now, hawthorne, omega3 and magnesium are among them, but it is too little time to see any effect.

    caledonia: I have nasal pillows too and indeed they are much easier to get used too, but there is problem with mouth-leaks because of it.

    When it comes to cavitations, I can't imagine how any doctor would adress those in my maxilla, because ortho pulled out my second molars and put front teeth backwards (UARS and narrow airway...) and there are no gaps left...
     
  12. john66

    john66 Senior Member

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    Hi Catherine, welcome to the forum. I am glad you found us and think you have probably found the most reliable source of empathy and information available anywhere for CFS.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi CatherineF

    Tip, if you use the @ sign before a person's name, they will get a notification that you have mentioned them.

    I am not in the UK so don't have any information about cavitation treatments there. I am in the US but travel to Europe to see an ME doctor.

    Best wishes,
    Sushi
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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