Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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In need of a little advice

Discussion in 'General ME/CFS Discussion' started by alcurtis93, Nov 16, 2014.

  1. alcurtis93

    alcurtis93

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    Hello everyone,

    I'm new to these forums so let me introduce myself. I'm 21, had CFS/ME for 19 months now. I have had a progressive decline in my condition from being able to work after my initial crash (gp said it was just pvf and I would do no harm pushing myself) to now being primarily housebound. I live with my parents who do not believe I'm ill which has been very frustrating and upsetting.
    My GP has been next to useless unfortunately and I have tried only one treatment which was Gupta's amygdala retraining (no improvement). There are no specialists in my county in the UK and no funding for me to go to the Yorkshire fatigue clinic in my nearest county. I've reached the point where I'm giving up on the NHS as I've naively up to now thought the condition would go on its own but that has been far from the reality.

    I don't really know where to start in terms of treatment, I don't know who in the UK specialises in this illness or whether it's a case of becoming ones own doctor and guessing at things to try. This illness is awful and I sympathise with everyone else going through it. I've lost my girlfriend, job and independence as well as many other things but I'm sure there's light at the end of the tunnel for all of us (maybe I'm being naive again).

    Any advice would be greatly appreciated. I'd love to meet someone my own age who has this condition. I know many people much younger than I develop it but just to speak to someone my own age would be great to know I wasn't the only one in my 20's who's so sick.

    I've never even met or spoken to anyone else before with this condition so I'm completely in the dark.

    Sorry if this thread doesn't make much sense or is in the wrong place. Not feeling too good tonight in terms of brain function. Pushed myself to exhaustion today
     
    Wayne, Sidereal, justy and 3 others like this.
  2. Esther12

    Esther12 Senior Member

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    Good luck with everything.

    Unfortunately there are a lot of really speculative treatments around that aren't supported by good evidence, but can end up taking people's time and money.

    Hopefully this is till something that you will improve from naturally, but 19 months is long enough that unfortunately the prognosis is less good.

    I really wish I had some good advice for you, but it's likely that lots of people suffering from different conditions end up being diagnosed with CFS, there's a real lack of good evidence for treatment for any of them, and there are a lot of false and unfounded claims around which can mislead people.

    I really only have advice on how to manage with being ill rather than improve your health, and much of that will depend upon the individual's preferences and personal desires for their own life. I don't mean to scare you, but I can really remember being in a similar situation to yours (although it sounds like my parents were being more reasonable), and it's now about fifteen years later and my health is no better. Hopefully your health will improve, but one of my real regrets was living my life as if I was going to recover, as this led to me wasting time and energy, trusting doctors, etc, when I probably would have been better off forming a life as an ill person and getting on with what was important to me.

    re medicine: I know lots of people who have been diagnosed with ME/CFS for a long time, and then found out that they were suffering from something else instead. It's hard to know how much time and effort to spend pursuing alternative diagnoses when you don't have anything solid to start on. Also, there is a danger of being sucked into some other form of quackery here.

    Sorry if this is a bit of a bleak response - I'm sure that there are other people out there who were in a similar position to you and then when on to recover too!
     
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  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I guess you are not near Newcastle?
     
  4. ahmo

    ahmo Senior Member

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    @alcurtis93 Welcome to PR. I'm sorry your declining health has brought you here, but you're in the right place for help. I also tried Gupta Retraining...along w/ many others. This sounds like a good idea, but doesn't touch your physiological problems.

    I'll lead off by suggesting you have a trial period off gluten and dairy. This was where my improvement began. More and more people are found to be suffering from the effects of these foods. Also gluten cross-reactive foods, I'm posting links. Best wishes to you.:balloons:

    http://www.glutensensitivity.net/index.html

    http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods
     
    alcurtis93 likes this.
  5. dan062

    dan062 Senior Member

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    Hi Al,

    You're not the only one - I was beginning to think I was too until I joined this forum!

    I've had a parallel experience to you (and like many others here) and am also a male in your approximate age bracket (I thought we were vastly outnumbered but judging by many of the posters I'm not so sure anymore).

    There's a special bond between sufferers of this in general, of course (suffering from a horrible illness that's been stigmatized by the medical professional - largely - and society is a rough lot) but even more so between people of this age, who also have to deal with the pretty traumatic realization that these are supposed to be the best years of your life.

    I had moved back home just before I got ill (the plan was for it to be temporary). This turned out to be a horrible stroke of misfortune (or more honestly, a bad decision on my part). In addition to dealing with CFS/ME I also have to deal with family that barely disguise their annoyance at my 'fake illness' and ask me to do things that are guaranteed to make me worse. I think I handle it worse than you!

    Here are a couple of thoughts:

    This is an amazing place to connect with incredibly smart people who have the benefit of decades of collective experience of living with this. It's a great place to discuss the latest hypotheses about CFS/ME and contribute info back if you have any. Try to get some theories about things you might be able to do while you're still going through the medical testing (unless you've arrived at a definitive diagnosis). Just browsing the index would be enough for you to get a skeleton overview.

    CFS/ME can also understandably become something of a cesspool of suffering and negativity for those struck by it. Do everything you can to keep your head up. I've gotten crazy into meditating (I would never have expected this!). Keeping your mental health in good shape will help you physically (tons of mechanisms) and give you the mental strength to keep the difficult fight up and persevere through everything that it throws at you.

    At the moment, I'm looking at antivirals. Previous to that I was trying to tinker with gut flora (the microbiome). But I'm also just scratching the service of this.

    Hope your condition improves.
     
    Mark37, Sidereal, alcurtis93 and 4 others like this.
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    @alcurtis93

    Hi, Welcome to the PR forums. It's a difficult situation when you're ill and unsure of a diagnosis. And it's unfortunate when family are unable to simply believe us. They are unfortunately aided in their disbelief by authorities that should know better.

    It will take your family some time and some effort on your part to realise that you are physically sick and that you need their support.
    It can't be pushed. A change of mindset will take time. There are some good resources here to help them get a different perspective on the illness than the one they may have now.

    For example there's this:
    (one of many episodes by Llewellyn King creator of 'the White House Chronicles').

    Or this: http://www.huffingtonpost.com/jenni...3725.html?utm_hp_ref=fb&src=sp&comm_ref=false
    (Jen Brea was a Harvard Political Science postgrad and has produced a film on ME "Canary in a Coal mine")

    There is useful information from the UK here: http://www.investinme.org/

    I'm sure others can chime in with many more excellent articles and videos that could give your family something to consider.

    Here on PR there are many people like you you were well, engaged in and happy with their lives and then fell ill.
    They come from all walks of life. That I know of there are Dr's, nurses, scientists in various fields, writers, teachers, engineers.
     
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  7. user9876

    user9876 Senior Member

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    Given your GP doesn't sound very good or clued up its worth checking he/she has done the basics to look for other problems. The NICE guidelines list a set of very basic blood tests that should be done. Its worth making sure that these are done and looked at. I know when my child was first ill it was even a challenge to get these tests done.
     
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  8. rebar

    rebar Senior Member

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    Hi Al,
    First there is always hope and managing your energy, stress and triggers can help. There is a real irony in the level of attention this illness requires and the mental and physical constants with which we all share. If this becomes long term, and that is not yet a given (most likely but not necessarily) you will learn gradually how to lessen some of the troubling symptoms.
    One last point, you have no clue about next week it may be "pretty good or it may suck so take it one day at a time, (for me) it often boils down to one moment at a time.
    My life today is better today than it was last year, I hope the same for you.
     
    Last edited: Nov 17, 2014
  9. justy

    justy Donate Advocate Demonstrate

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    REST, rest, rest, rest in the early stages is the best advice I have.

    Always make sure you get a print out of all the tests with lab ranges run by your dr or hospital and learn what they mean - sometimes they miss things.

    Consider more in depth testing for things such as Lyme disease, immune dysfunction etc. I have spent many many years faffing about with the NHS, supplements and diets only to realise I needed a Dr who understands M.E. I currently see De Meirleir in Belgium who has found some things to treat.

    Dr Myhill has an excellent website (UK based) which has helped many people to turn things around, especially if they have been ill for less time or do not have underlying infections. She offers testing, which I have had, but you really don't need the testing or to see her to benefit from her approach. Unfortunately it hasn't helped me much, but others have found relief.

    Oh, and hi and welcome...

    There used to be a group or forum for younger people with ME/CFS (PWME/CFS is the shorthand we use round here), perhaps someone else can remember where it is, how to access?

    I was young when I first became ill, but unfortunately no longer qualify...

    TAake care,
    Justy
     
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  10. alcurtis93

    alcurtis93

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    I'm in south Cumbria which is maybe 3 hours away from Newcastle
     
  11. alcurtis93

    alcurtis93

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    Thanks for all your replies. I have been given the diagnosis of CFS. I don't have painful joints apart from in my hands nor regularly suffer from headaches so I guess that rules out the ME aspect? My biggest symptoms are of course fatigue, brain fog, very fatigued after doing things outside my limits (10 minute walk) for around a week afterwoods. Disorientation and a feeling of moving through honey ( brain can't keep up with my eyes). I also get very tender glands under my armpits and have a near constant raised body temperature (37.5ish). It started after a very stressful period of working, uni, chronic prostatitis and girlfriend of 4 years leaving. I woke up one morning and was exhausted. I've had IBS since I was 16 and have always had a sluggish bowel and had to take regular laxatives but this morning my stomach was very upset. I went into work anyway and had what felt like a panic attack and the work paramedics were called in and I had low blood sugar despite having eaten loads that morning. Kept pushing into work each day and getting sent home (parents forced me). Week after that I went on holiday to Cornwall which was horrific for me. 6 hours in the car with prostate pain and exhauation and I spent the rest of the week in bed. I then came back and tried to keep up work but it was killing me. I managed 3 months with my hours getting less and less and continually having to go home until I had to give up. I've declined month on month ever since. Would you people still say I'm in the early stages and so rest is still very much essential?

    Sorry for the long post but I've never had the opportunity to discuss the illness before. Only my gp and a consultant gastro at the hospital have really hard the story before.

    Thanks
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am wondering if with prostatitis and hand pains you have Reiter's syndrome fatigue, which I have seen behave like this - much like other CFS. You are exactly the right age group. The questions would then be exactly what sort of symptoms do you have in the hands and have you ever had odd things happen to your fingernails or toenails and if so what. If you have the tissue type HLA-B27 then I think this would be a fairly firm bet. If it is Reiter's fatigue it very slowly resolves in most cases in my experience. Otherwise it may be that you would fit into the CFS/ME category. ME does not need to have headache or general pain - the term is more often used by patients and tends to imply some sort of cause whereas CFS is used by doctors to imply just a pattern of symptoms without any attempt to explain.
     
  13. dan062

    dan062 Senior Member

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    I don't get headaches much either (no more than a 'normal' person, lol), but do have the brain fog more or less constantly.

    Don't think your temp is that concerning to be honest. It's on the high end of normal, but anything up to 37.7C is considered okay if I remember right.

    I had the panic attacks and anxiety initially, too. My feeling is that it's simply a (normal) psychological reaction to the feeling of your body suddenly malfunctioning in many ways. Others will say that's it's a physiological thing to do with inflammation. I think it could well be a bit of both.

    Have you tried many antibiotics to clear out the prostatitis (assuming, of course, that it's infectious rather than inflammatory in nature; and even then that's it's bacterial)?

    Hope you feel better, anway.
     
  14. alcurtis93

    alcurtis93

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    I have repetitive strain like pain. Struggle to type or use phones. I don't think that quite fits the bill for that syndrome but thanks for your input
     
  15. alcurtis93

    alcurtis93

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    I tried antibiotics maybe 4 years ago but I never bothered again. The urologist and GP said everything seemed fine so never bothered again. Just dealt with the pain as best I could. Improved massively when I started working and going to the gym a lot. Who knows what's going on in there.

    I find meditation and relaxing the area helps. May be a myofacial issue.
     
  16. gregh286

    gregh286 Senior Member

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    hi bud,
    http://breakspearmedical.com/ are supposed to be excellent although expensive.
    its a fair trek to london for you.
    wish you all the best
     
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  17. alcurtis93

    alcurtis93

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    6 hours for me to get there and I've nobody to take me down or go with me (parents won't even allow me to try different diets as it will interfere with my mums weight watchers and I don't have the energy to consistently prepare my own meals daily. Not in a great situation really. Anyone had experience with the optimum health clinic? I've just today received a parcel of co q10, acetyl l cartinine, d ribose and methyl cobalamin. Any thoughts on these? Saw them recommended by Sarah my hill.


    I'm actually off tomorrow to see a consultant at the hospital (gastro specialist) about the ME. There are no ME specialists in my county so he has taken up my case. Is there anything I should specifically ask him to test or scan or do for me? An answer to that question would be a fantastic help. Don't want to waste his time anymore than I feel I already am.
     
  18. dan062

    dan062 Senior Member

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    I presume you've have it done, but just in case not, get an autoimmune panel done with ANA, RF, and whatever else the hospital runs with. If I hadn't asked, I wouldn't have had it done, and the rheumatoid factor being positive has really helped in being taken seriously (not that I hope you have any positives, of course!).

    Electrophoresis is important too (quantifies immunoglobulins).

    Have you any lung symptoms like difficulty breathing? Sarcoid is relatively common in this age bracket (although still very rare, and if you've had a normal chest x-ray you can pretty much forget about it). The test is ACE.

    ANCA for (some) types of vasculitis. Again, incredibly rare, but also very non specific in terms of presentation.

    On the supplement front: try to get as much stuff naturally as possible (that's my advice). Oily fish would provide a great source of both the B-12 and CoQ10. Don't know about the others.

    Hope it's go well. Don't be apologetic and make sure to press the point that you're not happy with a CFS/ME diagnosis but will take it if there's definitely nothing more worth testing for (as you know, there's nothing to be gained from having it).
     
  19. alcurtis93

    alcurtis93

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    Thanks mate, I'll put these to him. I'm pretty sure I've had every test the NHS offers but I'll see what he says. I do get intermittent bouts of very intense breathing difficulties. I can be calm and relaxed and yet it'll still be there. Feels like I have someone pushing down on my chest. Very nasty. It may be underlying anxiety. Can last from anywhere from half an hour or less to a few hours. I also have quite bad central stomach pain that started around the same time as the ME symptoms. Doctor just keeps giving me lansoprozole and omeprazole but they do nothing for it. I'm just weird ;)
     
  20. dan062

    dan062 Senior Member

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    Lol. No harm in making sure you've been tested for sarcoid, so, but I don't think it would come and go anything like that quickly (and would certainly be heard through a stethoscope).

    Mentioning vasculitis (and ANCA) might actually seem a bit hypochondriacal, but if you've already been branded as that with the CFS/ME label (at least how it's interpreted in the UK), you may as well go for it.

    Good luck!
     

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