The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Been awhile. Condition still SNAFU

Discussion in 'General Symptoms' started by meeKO, Jan 10, 2016.

  1. meeKO

    meeKO

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    Hi,
    I haven't posted for ages but it's a new year so for what it's worth:

    I post on behalf of my wife who is very ill.

    Her current state in brief-
    Can't be upright for more than 15 minutes

    Needs help standing to go to toilet and shower and then has to be in bed all day

    On heaps of Sleep meds, cycling thru many to retain some effectiveness. Always using seroquel and melatonin though.

    Badly limited diet. Uses FODMAP but also has ruled out heaps of naturally occuring chemicals. Meats, tofu rice, gluten free bread and some cooked vegies

    I've been too busy with work last year to stay engaged on the forum and also lost my will/confidence after trying to administer low dose Valgan to her with no positive effect. It, in fact, made her sleep alot worse we suspect which in turn exacerbated symptoms like fatigue and pain.

    After this we went to see a sleep specialist in our desperation. He was very understanding but believes she suffers from apnoea (also), so now she a has this weird arse mouthguard. Not sure if it's working yet... It has however given her oral thrush due to her terrible immune system...ALWAYS SOMETHING! I scrub that F***er 3 times a day for crisake!
    Good news is that she isn't going UP on sleep meds:woot:

    Small victories huh

    As for diet she went to see a gut guy who took one look at her and wanted to admit her and put the naso-gastric tube in her.
    We'd let her weight slip to under 50kg. And she's 5'10"...! Feel awful about that. Like she's wasting away under my nose.
    She was resolute not to be an inpatient after her last experience that almost broke her (getting administered IV ketamine and having no access to regular pain and sleep drugs. No sleep. In agony. Early discharge)

    But she's also resolute to gain weight.
    The Eating disorder specialists say her diet restrictions are largely built up in her head which she finds hard to swallow :lol: and I've seen the evidence time and again of her straying to other foods but there's still something to be said for pushing those boundaries...hmmm

    So my aim is to feed her like the proverbial turkey and find something ANYTHING this year that helps her condition.

    Diet is just one thing even though her CFS specialist pointed to a high protein, high fat diet as a key to recovery.

    It's too depressing for her, turning 30, having lost her 20's and teens to this thing, to lie down and be patient and sick for another year.
    And for me too. I hate it. Life would be perfect if not for this sickness.

    Thanks for reading
     
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  2. sarah darwins

    sarah darwins I told you I was ill

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    I don't know what to say except wow, you're a star.

    Are you in touch with other carers of severely ill people with ME? Some of the ones in the states have good doctors and might be the best source of ideas.

    But otherwise ... good on you. I hope things take a turn for the better some time soon.
     
  3. lansbergen

    lansbergen Senior Member

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    Does she ever say she feels like she would fancy a certain food at a certain time. like pregant woman do?

    I had a time that I ate almost nothing but mars bars and there was a time I needed the eat at least two eggs a day.

    After I fell ill I lost so much weight I became skin over bone. After I started to take the immune modulator I gained so much weight my belly looked like I was nine months pregant with twins. The last years my belly slowly has gone to almost normal.

    Can she still swallow well? At some point even water did not go down my esophagus.

    I have improved a lot but is was a very slow process.
     
    meeKO likes this.
  4. Effi

    Effi Senior Member

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    @meeKO not sure what to say, but wanted to let you know that I admire your strength and all you do to keep going. Also admire your wife's strength, it sounds like she is suffering terribly... I hope this new year will grant you some progress.

    PS: I've heard of people in a similar situation re:weight and they got it under control somehow (very slowly), so it is possible in some cases. Don't give up. Wishing you all the best... :hug::hug:
     
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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    PatJ and meeKO like this.
  6. worldbackwards

    worldbackwards A unique snowflake

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    I was assessed for eating disorders when I was in hospital, as I didn't eat much because it always left me in pain one way or another or bought up other unpleasant symptoms. The psychiatric nurse (who was the only person I saw who seemed to have a clue what they were dealing with) heard me out and said it was just ME. It's important that these restrictions are not ignored, as the wrong foods can cause all sorts of bother. Sensitivities to both food and chemicals are, in my experience, the first thing that people seek to dismiss, because they just can't cope with the idea that something so minor can be so destructive.

    If sensitivities are very severe, you can sometimes get into a situation where foods that haven't been eaten for a long time can provoke reactions, but are tolerable with gentle re-exposure over a period (say, eating something once every couple of weeks in a small portion for a while or something). But to be honest, whilst that stuff was really severe I was much happier to keep a restricted diet and use any energy I got for doing something useful rather than messing about with food, which can be rewardless and draining. Quantity is better than variety at this point.

    In terms of gaining weight, I've found that this is really important. I fell to nine stone at one point (a long way below what I should have been) and the weakness seemed to feed into the illness - a lack of physical strength in weight terms can make the illness worse in itself. Not to say anything dramatic happened when it went back on, but I did feel better - it's good to be the right weight.

    I'm not sure about this. I think the key is to find the foods that she tolerates best and not to get caught up in anyone else's ideas of what a good diet should be. Someone always has an opinion to shove in on this score and in my experience it's almost invariably wrong. Personally, high fat for me makes me really ill, on top of which it would often just go straight through and I'd lose more weight anyway. Just getting in lots of what she can tolerate in many small meals is probably best, although if there are other specific problems with swallowing and the like I'm sure you'd know best about that sort of thing.

    Good luck and keep doing your best - when you're severely ill like that it's vital to have someone on your side to look after you and it sounds like you're doing a great job .:thumbsup:
     
    Last edited: Jan 10, 2016
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  7. lansbergen

    lansbergen Senior Member

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    I agree

    I am not sure about lots but several small portions was and still is best for me.

    When I have a large serving on my plate and my stomach says it is full I stop eating.
     
    meeKO, MeSci and worldbackwards like this.
  8. Hip

    Hip Senior Member

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    Has your wife been considered for MCAS (mast cell activation syndrome), which can create all sorts of sensitivities to foods and chemicals?

    Drugs such as antihistamines and mast cell stabilizers are used to treat MCAS, and reduce mast cell activation:

    H1 antihistamines — hydroxyzine, cetirizine

    H2 antihistamines — ranitidine, famotidine

    Mast cell stabilizers — NasalCrom, GastroCrom, ketotifen

    MCAS is hard to diagnose though, because its symptoms vary a lot from one patient to the next.


    I don't know that much about MCAS, however. @Gingergrrl might be able to say more.
     
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  9. redrachel76

    redrachel76 Senior Member

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    I was underweight with food sensitivities - mainly constipation but also diahroah and severe digestive pain.

    I was really helped by raw camel milk. It is available in your country too.
    Despite the 2nd link below being very muted about the benefits, I strongly recommend you buy the smallest amount possible and try.

    Since she is severe, start her on 1 teaspoon a day. Then slowly build up.
    Prof Yagil, the world specialist on camel milk, recommends 2 cups per day for "CFS". So that is what I take.

    It sounds expensive but if it doesn't help, you can try selling the rest on a local Crohn's disease patient forum so you'll your money back.

    You MUST make sure you have only RAW camel milk from a safe and clean farm with good hygiene that other patients with Crohn's disease, diabetes, M.E etc use.
    https://www.ima.org.il/FilesUpload/IMAJ/0/48/24201.pdf
    http://blog.anytreatment.com/camels-milk-for-autoimmune-disease-buy-or-sell/

    There is also a camel milk forum on facebook if you want to investigate further.

    I have *severe* cow's milk intolerance. (Half a glass of cow's milk gives me diaroah and pain lasting 2 weeks!) yet was healed by raw camel milk. So if your wife has intolerance to cow's milk she can still take camel milk.
     
    Last edited: Jan 10, 2016
    meeKO likes this.
  10. *GG*

    *GG* Senior Member

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    Wow, so sorry to hear about your wife. yeah, i'm sure you would be very happy if you could put this illness in the past! This illness puts lots into perspective, and I'm not even severe, although I have suffered crashes, so I have a good idea :(

    Is she sensitive to meds? Have you heard of LDN (low dose naltrexone)? Think that might have helped me, but not certain since when i crashed. I had been ill for at least 5 years, and was tired of changing one thing at a time, and not making any gains! So I changed lots, go better, so cannot pinpoint what helped.

    Just wanted to mention that I was on Trazadone for sleep when I crashed, it quit working, went on Remeron, and started waking up feeling a little better. Have heard that Remeron gets its name from helping a person get more REM sleep! I started dreaming again, hadn't in years, it was wild for a while, had some crazy dreams!

    GG
     
    meeKO likes this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    I think you covered everything and nothing I can add. If @meeKO is curious about it, feel free to PM me.
     
    meeKO likes this.
  12. meeKO

    meeKO

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    Thanks for kind words @sarah darwins . I'm in Australia and I haven't looked in to any networks for carers but definitely a good idea.
    Thank you
     
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  13. meeKO

    meeKO

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    Hi @lansbergen. No nothing particular like that. We definitely feed her a lot of eggs though. Trusty staple!

    YEah she swallows well.

    What was the immunomodulator you were taking?
     
  14. meeKO

    meeKO

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    Thanks @Effi
    Yeah we're hoping for tangible progress this year. Just have to plot the course now.
    I know we'll get the weight back on cos she's a determined and stoic person.
    I honestly don't know how she, or any of you, keep it up.
    Reading some of the obituary pieces on the forum I realise some don't but having everyone supporting here is just great.
     
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  15. meeKO

    meeKO

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    Cool thanks @ScottTriGuy . Looks left field but that's probably a good thing 13 years in!
    Thanks for the kind words and congrats on your progress!
     
  16. meeKO

    meeKO

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    Thanks @worldbackwards . You're really reaffirming what she suspects/feels in her gut every day.
    It's true and she's very dilligent about sticking to it but I also like when she ventures tentatively out.

    Yes. Exactly this. Some things in the higher fat range are tolerable but it's pretty dicey.
     
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  17. meeKO

    meeKO

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    Hi @Hip . Gosh she's done so many tests I'll have to check.
    Thanks for the clue though, I will definitely chase it up. ;)
     
  18. meeKO

    meeKO

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    Hi @redrachel76
    Whoa! Camel Milk. I know we have a lot of feral Camels in the outback roaming around so someone must milk them. And if it benefits us then all the better.
    I'll check that out. It sounds like it works wonders for you.
    She is of course lactose intolerant but it's not nearly as severe as yours.
    I'll get on those links
    Thanks.
     
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  19. meeKO

    meeKO

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    Hi @ggingues
    Yeah she has tried LDN. Sadly didn't do much. She can be sensitive but I don't think there were any problems with that.
    Yeah we've been trying alot of different sleep meds and clearly tolerance was going up so were trying to cycle afew and give this mouth splint thing a chance. Here's hoping. She needs that REM sleep. I don't think Remeron is available here... but I'll double check.
    Thanks.
     
  20. sarah darwins

    sarah darwins I told you I was ill

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    There are definitely some carers around these parts but I forget the names. I don't think there's a sub-forum specifically for carers (could be wrong), but maybe there should be? Just to make it easier to get in touch? You guys have a lot to deal with.

    Anyway, ignore me. All the best.
     
    meeKO likes this.

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