May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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OMF and remission?

Discussion in 'General ME/CFS Discussion' started by nikefourstar, Jan 19, 2017.

  1. nikefourstar

    nikefourstar

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    So I was reading somewhere on the OMF website that Ron Davis's intern or someone working with him got ill the same time his son did, but that he had gotten better. He also talked about getting other people who have gotten better from this disease to maybe understand what they did to help themselves to better understand what is going on,, so my point I guess is that even Ron Davis himself admits that people to get better from this he just doesn't know how. Everyone seems so certain that you can't recover. So is there hope for some people.,
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    No one is certain that you can't recover from this disease--just that it isn't easy to do and no one treatment works for everyone. Probably about half the members of this forum have found ways to get better, if not fully well.
     
  3. TrixieStix

    TrixieStix Senior Member

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    and you also hear about people who recover only to relapse many years later.
     
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  4. nikefourstar

    nikefourstar

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    Well that's better than nothing at all, or getting worse for that matter.
     
  5. justy

    justy Donate Advocate Demonstrate

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    I'm one of those people. Is it better? marginally. Yes I had some very good years, and everyone wants that. But I wasn't completely cured and still had issues with my health and struggled to bring up my family. I could never do a full time job or get fit and had stamina issues. When I relapsed, I relapsed hard, as many of us in my situation do. Much more severe this time and no hint of remission. It basically means my whole adult life, and some of my childhood have been affected by this disease.

    My daughter also spontaneously recovered, but she also has limitations on her life now, as I did. I worry all the time that she will end up as sick as I am in the future.

    M.E wrecked my life and took away my ambitions and dreams for myself and my children.

    Im not saying some people don't get better, but im not agreeing with your statement above.
     
  6. Sasha

    Sasha Fine, thank you

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    I was bedbound for many years, went into remission for many years (during which I could work full-time and exercise in a gym) and then relapsed many years ago. So a good remission is possible after being very ill but it's not necessarily recovery.

    In your position I'd take hope from the fact that a good and lengthy remission is possible and that you're young (which increases your chances) and have got sick at a point in time when research is really taking off and we have the most reason for hope that we've ever had.

    For now, I'd advise you to rest, rest, rest and slowly read up on what ME is and what self-management and self-treatment is possible.

    Good luck, and don't lose hope!
     
  7. nikefourstar

    nikefourstar

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    @Sasha were you bedbound right in the beginning? I'm so afraid of not just not getting better but getting worse since I started off so bad. But trust me I have read up on so much of this illness within the last couple of weeks which is mostly the reason I am so scared. I have already lost so much hope.
     
  8. Sasha

    Sasha Fine, thank you

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    I had a flu-like illness that put me in bed for a couple of weeks, then recovered a bit but then got another dose that put me in bed for a good number of years. While it's true that severity of illness is linked with a less good prognosis, being relatively young and resting - not buying into the "it's all in your mind, you're just deconditioned and can exercise your way out" crap - is linked with a better prognosis.

    Don't be scared because you're reading on the forum about people who've been ill for a long time. I've been ill for over 30 years and have never seen anything like the research push that's going on now, or the kind of amazing biomedical research tools that are being deployed now by brilliant scientists the world over. I'm certain that if my illness had started now, the its course would have been very different because of all the research that's coming down the pike now. I think that in the next year or two we'll start to see treatments that, even if they're not curative, will give PWME substantial improvements in health and function.

    I'm sorry that you're finding your situation so distressing at the moment. Getting so sick is a hell of an adjustment to have to make. I wonder if you might want to consider depression (which can accompany ME as either a symptom of the disease or as a reaction to the distress of having a severe and chronic illness) as something that might be contributing to your feeling of hopelessness. If it is, you might get some benefit from seeking treatment for that specific symptom.
     
  9. purrsian

    purrsian Senior Member

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    I like to think about ME as a disease like diabetes - you can do things to manage diabetes symptoms and even be completely free of symptoms, but you must accept and continue those lifestyle/medication changes in order to keep that improvement. I like to think this gives me hope for improvement without false hope of a cure (in case it never happens).

    I think that the fact that you have started off bad isn't necessarily going to mean you will get worse. Often, the first bad period can be one of the worst times. Both physically and emotionally. Also, be careful about how you research - there is a lot of poor information out there, and a lot of articles that focus on the worst parts of illness (encouraging you to "catastrophize" and panic). CFS conjures many different treatment protocols, ideas on pathophysiology, and different ideas on cause, so you'll come across plenty of terrible information amongst the good information. So keep an open mind about what you read and whether you should take note of it.

    When I was my worst, I felt like it would never improve. I felt there was no light at the end of the tunnel. But there was, and I improved eventually. Still not great and still greatly debilitated compared to a normal person. But I'm better than I was and I can do some things, like study part time. The fact that you are here, finding advice and information from people who have been through what you are going through, is a wonderful thing. @Sasha is right about all the research going on. It's an exciting time. A university in my state has secured sizeable funding and are close to a diagnostic test for CFS. Research is proving our immune systems are messed up, which will hopefully lead to an understanding of pathophysiology. There's a lot going on in the medical world to give us hope. But I know it's still hard to find that hope. It's still hard to keep managing daily life. We are all here for you, sending you all of our best wishes and support. We understand how bad you feel. It's not nice :( But you aren't alone :hug:
     
  10. nikefourstar

    nikefourstar

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    @purrsian thank you for that very good very thoughtful post. I really hope they find a treatment or a cure, I personally believe that since this is such an odd disease that once they figure this out that it will be a full cure. I don't think there is any other illness out there that is like this one, I mean think about it, it can't exactly kill you, you feel like you're dying but you don't look sick everything that would normally help get you better from being sick is the opposite with this. I really believe it was some kind of switch that got flipped the other way. That's why they can't find anything wrong with you in standard blood tests because the "switch" isn't going to show up on a blood test. Your body thinks that it's working normally but it's not, it's on a different planet. So weirdly how mine was set off was through insane amounts of chronic pain and than the night before taking a bunch of neurantin. If I don't inprove or start to get worse I'm going to test it to see if I take all of those neurantin again that I can't flip that switch back. I mean nothing else works
     
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  11. purrsian

    purrsian Senior Member

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    Yea it's such a frustratingly vague disease, hard to really explain how horrible it feels so doctors will take you seriously! I agree with it being like a switch and there have been a lot of theories about things either being stuck "on" or stuck "off".

    I had a quick google of neurantin, as I'd never heard of it. Interesting to see "Common side effects of Neurontin include: ataxia, dizziness, drowsiness, fatigue, fever, nystagmus, and viral infection.". I wonder if the higher dose affected your immune system somehow? It mentions viral infection can be a common side effect, so it must be able to do something to your immune system. Perhaps this was the trigger that messed it all up, rather than the actual viral infection that most people seems to experience?

    You might not have had the chance to figure it out if you still get colds/flus yet if you've been housebound, but a substantial amount of people with ME don't often get colds/flus. I'm one of them, so I've been researching a lot about immune system in CFS. Currently trying low dose naltrexone, but there's also antivirals to try next and maybe rituximab one day. It's an interesting route to go down if you feel it fits your circumstances, as there's a lot of research about it these days. Another thing worth looking into is POTS (increase of heart rate more than 30 beats per min on standing, or above 110, I think those are correct amounts). It's underdiagosed but quite common in people with ME, and there's lifestyle changes you can implement to improve it a bit. Might not fit your symptoms, but definitely something I wish I'd heard of earlier in my illness!

    Problem with ME is there are so many routes to go down, that it's so hard and confusing to research and decide what to try, especially when just reading is so hard!
     
  12. *GG*

    *GG* Senior Member

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    This reminds me, I remember a mother on this Forum, think she was sick. Her daughter was also sick, but was able to get better with anti-virals and was able to get thru college, and is perhaps working now? Anybody remember her name?

    Not sure she is still on the forum.

    GG
     
  13. Dainty

    Dainty Senior Member

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    Have you read the Canadian Consensus Criteria for CFS, yet? I'm confused by your surety that you have this illness, because your very first post here when you explained your medical history everyone replied saying it actually doesn't sound like CFS in their opinion. That's good news! It means your condition could have a really straightforward solution. But you'll never find it if you don't look into the possibility that it could be something other than CFS. CFS is a diagnosis of exclusion, after all other possibilities have come up empty. That includes lots of medical testing, which it sounds like you haven't done because you haven't seen a doctor for this yet.

    There's a lot of hope out there, and so many people here have shared with you why they have hope for themselves and for you, as well. But it does include actually seeing a doctor, and getting medical testing done for things like vitamin deficiencies and such. All we can do here is support each other, the rest is up to you.
     
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  14. Dainty

    Dainty Senior Member

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    Was that @Purple? My memory is really fuzzy but for some reason my brain associates her screename with that.
     
  15. barbc56

    barbc56 Senior Member

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    Really? That doesn't seem accurate.
     
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  16. Hip

    Hip Senior Member

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    Sounds about right to me, having read the hundreds of stories on this forum about what drugs and supplements have helped improve symptoms.
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    This is just my impression reading people's stories here.
     
  18. barbc56

    barbc56 Senior Member

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    Huh. I guess it's all relative. Interesting, though.
     
  19. Valentijn

    Valentijn Senior Member

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    Even if the disease can't directly be treated currently, symptoms can certainly be managed to a significant extent. That makes life a lot more pleasant, even when it doesn't reduce disability. Adaptations for disability in and out of the home can also help a lot.

    The other thing is that any disease diagnosis is going to result in some form of loss. The life that was so easy (in retrospect) is replaced by something more difficult. It's natural and healthy to mourn that.

    Then we can move on to a new stage in life where we find new ways to enjoy life, and replace the activities which are no longer feasible. Because life is far from over ... it's just changing.

    And I agree with what others have said in various threads: the research has drastically accelerated in the past couple years. There have been some consistent breakthroughs into the physiology from various teams of researchers, and the resistance to biological research is on its last legs.
     
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