Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

What has helped you the most?

Discussion in 'General ME/CFS Discussion' started by hanhanhannah11, Apr 11, 2014.

  1. hanhanhannah11

    hanhanhannah11

    Messages:
    15
    Likes:
    11
    London, England
    Hello!

    I stumbled upon this website yesterday and it's made me feel so happy to see so many people supporting and helping each other. I'm so excited to be a part of it!

    I don' t know if this questions has ever been asked before (I haven't looked at all the topics yet) but I was wondering : what has helped you the most?

    I know it is kind of a broad question, but I am so interested.

    You can tell me about treatments you've tried, doctors you've spoken to or just little things that you have found have a possessive difference to you. It doesn't matter what stage of recovery you are in, I want to know what you think has helped you out, in a big way or a small one.

    This is a space to talk about recovery and exchange recommendations and ideas, and hopefully it will provide us all with a few new things that will help make positive changes to our life styles!

    I am really looking forward to hearing what you have to say.

    Hannah xo
     
    MeSci, Ambrosia_angel, Kina and 2 others like this.
  2. Raindrop

    Raindrop Senior Member

    Messages:
    129
    Likes:
    125
    USA
    Thank you for this!
    My sleep is helped by trying to wind down 2 to 3 hrs before I am trying to sleep. No (or very very low)
    noise (so hard)....very low light, Not talking to anyone on the phone and *not being on the computer or
    watching TV* (which activates the brain) -- all of which I find extremely difficult to regularly do!!!!!
    When your cognitive faculties are the best late at night, it makes you want to use them, but
    it sabotages the "wind down".

    Amazingly, long Yoga classes used to help reduce my glare/light sensitivity when I did them, and so did massage.
    Sadly, I have been unable to do these things for years due to lack of money.
     
  3. hanhanhannah11

    hanhanhannah11

    Messages:
    15
    Likes:
    11
    London, England

    Hey! Thanks for replying, I was scared no one would :')

    I agree, is so important to have a good routine at night. It is hard to get into one though! I've found drinking herbal teas that are specifically targeted at making you feel calm a very helpful. My favourite one is by a company called 'Pukka' and it's called 'Night Time Tea' - I usually drink it while reading a book or sometimes I go and sit in my back garden (if the weather is nice enough, obviously.) Somehow it stops my mind being all jittery, I can't explain it.

    What type of massage did you use? I've never tried it but people have been saying it works wonders. Also , with regards to yoga, have you heard of the book called 'Beat Fatigue With Yoga' by Fiona Agomar? She is a recoverer herself and all the poses are very gentle. It is also a DVD too, but for a nightly routine the book is probably better :)

    Thanks so much to replying!

    Hannah xo
     
  4. peggy-sue

    peggy-sue

    Messages:
    2,623
    Likes:
    3,219
    Scotland
    I've got Fiona Agombar's book. It's far too much for folk with ME. I personally suspect a case of CFS.
    There are lots of poses that involve arm raising - out of the question unless I can achieve something by it, such as getting the laundry hung up.

    Simple, easy things to incorporate into your lifestyle, which will save you a ton of energy:-

    Never stand when you can sit down; never sit if you can lie down.

    If you have to stand, shuffle about a bit.
    That way, you are shifting between muscle groups which are doing the work of keeping you upright, and keeping you balanced...

    rather than keeping a strain on the same muscle groups, all pulling in opposite directions to each other to keep you upright and balanced.
    That, although you are not aware of it, is a lot of work.

    If you have to sit, sit with your legs raised.

    When you are walking around, the muscles in your legs physically squeeze the blood which has gone down to your feet back up again, because they are expanding and contracting around your blood vessels. There are valves which keep it up.

    When you are sitting, your poor heart has to do all this work on its own.

    When the blood reaches your feet, it is at its furthest point from the heart, your heart has to push really hard to get the blood form your feet, back up against gravity...

    If your feet are raised, your heart doesn't have to work against gravity to get your blood around.
     
    MeSci likes this.
  5. hanhanhannah11

    hanhanhannah11

    Messages:
    15
    Likes:
    11
    London, England

    Hi Peggy-Sue! Thanks for the tips.

    I'm sorry the book didn't work for you. ): Did you try ignoring the parts which involved raising your arms or did that not have the same effect? Also, have you found any other yoga styles that suit you instead?

    Forgive my ignorance, but I was under the impression that ME and CFS were the same thing? It's just that when I got diagnosed with one (I forget which one now actually) I asked my doctor if I had the other and she said 'well they both mean the same thing' so that is what I've always thought. Can you explain the difference to me please?

    Hannah xo
     
  6. peggy-sue

    peggy-sue

    Messages:
    2,623
    Likes:
    3,219
    Scotland
    It's quite simple, basically.
    If you've got PEM, (Post-Exertional Malaise) you can't do any exercise without getting really ill afterwards - much afterwards - with an exacerbation of all symptoms. That's ME.

    Your body simply refuses to go aerobic - you get lactic acid build up in your legs if you try to walk upstairs or up a slope, (or raise your arms) while walking on the flat isn't nearly so much of a problem as long as it is slow and easy.

    This obviously is only for mild or moderate ME - not the severe sort, where you're bedridden in a dark room with earplugs.

    If you don't get PEM, it's likely to be something else causing the CFS, which is a group of symptoms cobbled together by psychiatrists, who believe the problem is caused by too much rest during an illness and then us being to lazy to get fit again. It's not a real diagnosis of a true, known illness. It's a wastebucket of heterogenous groups of sick folk.

    I did Vimi Yoga practise for 5 hours a week, had been for 3 years, when I got sick. I was super-fit then!

    I can do the "corpse" pose ok, these days.

    There is something funny going on with my pc. I haven't got any emoticons
    and I can't bold or italic or underline anything to make my posts a little bit more
    legible and clear.
     
    Last edited: Apr 11, 2014
    MeSci likes this.
  7. SOC

    SOC

    Messages:
    7,803
    Likes:
    16,293
    1) Valcyte -- got me from bedbound to housebound, so huge improvement. Daughter went from nearly housebound to remission. Also got rid of flu-like symptoms, a large part of the cognitive dysfunction, an the rest of the muscle pain (see below for the rest of the muscle pain issue)

    2) Florinef (for hypovolemia) and verapamil (for tachycardia) -- made me much more able to be upright, do things around the house, and be out and about in public more.

    3) Pacing based on staying well below my AT (as determined by a one-day CPET) -- Stopped my downhill slide, and ended a lot of the muscle pain, and the constant tiredness that was the result of overdoing.

    There are other medications and supplements that helped to a lesser degree, but those are the big ones. :)

    These treatments would not be appropriate if you have only chronic fatigue (the symptom). In the UK, simple fatigue is often incorrectly diagnosed as CFS or ME. If you have only fatigue without the PEM and other neurological and immune symptoms, then you should insist your doctor look for a better diagnosis because your fatigue might be treatable.

    You can read the International Consensus Criteria for Myalgic Encephalomyelitis to get a feel for whether you actually have ME. Don't expect any UK doctor to acknowledge these criteria, though. For some reason the NHS is determined to keep its head stuck in the dark ages (and maybe somewhere else as well) with regard to ME.

    Here's the basics. You'll have to read the full paper to get all the details and references. (PEM is called PENE in the ICC)
     
    SDSue, natasa778, zzz and 4 others like this.
  8. peggy-sue

    peggy-sue

    Messages:
    2,623
    Likes:
    3,219
    Scotland
    Hanhanhannah11 is in England, @SOC. No valcyte, no florinef, no verapamil, no proper tests.:(

    I got a lot of help from Dr. Myhill's site, and from Hummingbird's.

    There is information in those about the sorts of supplements that are available to us in the uk.

    The ones I find most useful are high dose EPA and sublingual Vitamin B12.
     
    MeSci likes this.
  9. SOC

    SOC

    Messages:
    7,803
    Likes:
    16,293
    She didn't ask what was available in the UK, she asked what works.

    It's beyond sad that the most helpful tests and treatments are not allowed in the UK. That's one reason I continue to encourage UK patients to go outside the country to see KDM.

    There are few patients who live within 2 hrs of a top specialist. US patients generally travel MUCH farther than that to see specialists, and our tests and specialists cost a lot more than you'll pay KDM. If you want decent treatment for ME/CFS, you have to do what it takes to get it.
     
    zzz, taniaaust1 and peggy-sue like this.
  10. peggy-sue

    peggy-sue

    Messages:
    2,623
    Likes:
    3,219
    Scotland
    Well, yes, you're correct of course.

    Paying for it can be a huge problem.

    We don't have compulsory health insurance here - and it's an expensive extra to take out. We already pay for our health care via taxes and National Insurance. (Or so we are told. The money gets used for other things, but that's government for you.)
     
    MeSci likes this.
  11. SOC

    SOC

    Messages:
    7,803
    Likes:
    16,293
    So true, but even health insurance, which we pay a lot for, doesn't cover 100% of all medical costs. There is still a large out-of-pocket expense even with good insurance in the US. Some US patients have found it can be cheaper to fly to Brussels to see KDM than to see a US specialist, even with insurance.

    I can't speak for other US families, but out-of-pocket medical expenses (including travel to see our specialist 2000 km away) for 2 ME patients is one of my family's major expenses -- more than food, for example. We will probably have to sell our house and downsize to continue to afford it. We have good insurance, or we wouldn't be able to afford ME treatment at all.

    It's worth it, though. If we didn't choose to make the effort and pay the cost for good medical care, I'd still be bedbound and unable to read or think clearly. My daughter would have had to drop out of college and be housebound or worse. Instead, I'm largely housebound, but able to earn some money tutoring, and do some light housework. Daughter graduated from college, is now in graduate school, and has enough of a social life to meet a charming young man and get engaged.

    I wish it didn't cost so incredibly much to get decent medical care. I wish we could get that care from a doctor within 100 km instead of having to travel 2000 km. But it is what it is. I'd do it again in a flash if all we got was a real life for our daughter. Our other choice was to let her drop out of college and have no future. Not an acceptable solution.

    It's not fair we have to give up so much (in effort and money) to keep our daughter functioning, but we do what we have to. Nothing seems to be fair about having ME. Nothing.
     
  12. Hopeful78

    Hopeful78

    Messages:
    7
    Likes:
    7
    Long Beach
    What has helped me the most is to learn to accept what I cannot change. I focus on what I can do and not what I can't. Doctors have not been particularly helpful as I do not have any indication of having anything in my blood work. I have idiopathic chronic fatigue and aerobic exercise intolerance. Instead of becoming depressed about not being able to do martial arts and dance, I am appreciative that I can walk, paint, read, write, etc.
     
    Starfive, amaru7 and peggy-sue like this.
  13. SOC

    SOC

    Messages:
    7,803
    Likes:
    16,293
    Have you tried seeing a top ME/CFS specialist instead of local docs who know nothing about the illness? Getting appropriate medical treatment seems more beneficial than simply accepting disability. Or is that not useful for idiopathic chronic fatigue and aerobic exercise intolerance?
     
  14. peggy-sue

    peggy-sue

    Messages:
    2,623
    Likes:
    3,219
    Scotland
    Few folk have the resources in the first place, in order to be able to give them up, to get treatment. :(
     
  15. Allyson

    Allyson

    Messages:
    1,684
    Likes:
    679
    Australia, Melbourne
    D ribose for muscle aches,

    IM B 12 innections for sleep


    POTS testing - POT is one symptom that responds well o treatment for many

    good luck!

    Ally
     
    SickOfSickness likes this.
  16. Starfive

    Starfive

    Messages:
    85
    Likes:
    51
    @SOC
    How long on Valcyte if you are up to sharing details?
     
  17. Starfive

    Starfive

    Messages:
    85
    Likes:
    51
    My biggest help so far is pain meds plus my heating pad, very low tech but helps for the pain in my legs. I have tried many supps and some valgancylovir for only three months and feel like I am not dosing high or low enough or long enough maybe. I do not have a good ME/CFS doctor, specialists exist but do not take insurance and charge high fees.
    This forum is a big help!
     
  18. SOC

    SOC

    Messages:
    7,803
    Likes:
    16,293
    We were on Valcyte for 20-24 months, off for 2 years and now back on it for about 3 months so far.
     
  19. SOC

    SOC

    Messages:
    7,803
    Likes:
    16,293
    If your doc is not familiar with Vacyte, s/ he may not be aware that it crucial to get blood tests to check for neutropenia and liver problems every 4-6 weeks. Both are reversible if caught quickly and potentially fatal if not. Please make sure you are getting proper testing.

    In my first round with Valcyte I felt nothing for 4 or 5 months, then pretty awful for about 2 months, and then noticeably better after that. Daughter, otoh, had a slow continuous improvement after the first month and had no bad stretch.

    In this second round, I felt much better after the first month, while daughter is improving but more slowly.

    Response to Valcyte seems to depend on a lot of as yet unidentified factors.
     
    Last edited: Apr 27, 2014
    peggy-sue likes this.
  20. Ema

    Ema Senior Member

    Messages:
    4,276
    Likes:
    5,901
    Midwest USA
    I was just going to ask you this!

    Thanks for reading my mind...:)
     

See more popular forum discussions.

Share This Page