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What to do when everything makes you worse?

Discussion in 'General ME/CFS Discussion' started by 2012, Dec 22, 2013.

  1. 2012

    2012

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    Hi,

    I'm sorry this post sounds a bit gloomy. I'm just really really struggling. I have spent years solidly following doctors recommendations - supplements, medicines, diet etc... but by doing this I have made myself far sicker than I was. My whole life revolves around my health - but not by choice! It is not that my Doctor is lacking knowledge or experience... but rather that my body just does not tolerate anything or it has some bizarre or paradoxical effect.

    Everything I have tried has either outright made me worse, helped one thing and caused another problem or helped and then stopped working. I'm at the the point where I feel I am far better off just not trying anything even if my test results indicate an issue which needs addressing.

    Everything from the gentlest natural supplements to more aggressive things cause problems. I feel so stuck and so helpless... I know there are many many sufferers who are in the same situation... I'm not asking for sympathy... I just don't know what to do anymore!?
    justy, oh_noes, Tito and 3 others like this.
  2. ukxmrv

    ukxmrv Senior Member

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    What happens if you just try and rest?

    That's what I do sometimes when it is all going badly.
    biophile, xchocoholic, Plum and 2 others like this.
  3. 2012

    2012

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    I'm trying to rest but I'm finding it so difficult. I can't sleep at night even though I was previously sleeping ok. If I lie down during the day I can't sleep at night. I don't want to sound dramatic but I feel like what I imagine it is like being poisoned. I suspect I must have some sort of secondary infection causing havoc. My brain feels like it is going to explode from the pain.
    I can't read or watch TV, I'm struggling to use the computer but I'm so desperate to find some help. I'm unable to get onto my doctor and I don't know where I can go to get help.
    Antares in NYC likes this.
  4. beaker

    beaker CFS/ME 1986

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    Have you thought of trying to get into a ME/CFS specialist ? I know that won't help your immediate problems, and you may end up on a wait list -- but better to do so now and then cancel should you no longer need or want to go. (I don't think that happens very much) Otherwise, you may be in the same state down the road and wish you had gotten on the list or an appointment no matter how faraway.

    Can you list what you have tried and what side effects they have caused ?
    What is your functioning level ?
    There are very few things I can tolerate, so I do understand. Sometimes laying in a dark quiet room curled up in a ball is the best we can do.

    PS Is your dr. willing to treat pain aggressively ? It may take a lot of hit and miss to find some pain med that helps and you can tolerate. That made a world of difference for me. But it took a lot of trial and error to get there.

    Sorry you are in such a bad state. Keep hanging in there.
  5. Plum

    Plum Senior Member

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    So sorry to hear of your own going problems. From my own experience I have found that I have to have:
    9 to 10 hours sleep a night
    control blood sugar
    rest during the day but not nap
    eat an organic, whole food diet that is balanced
    work on gut issues

    If any of these are missing, there is no point in me taking supplements (unless they are going to help with one of the above) or medications as they only make things worse.

    Pain for me has often been caused by either toxin build up or inflammation - I would consider taking something for this while working out the cause.

    I think there are well meaning Dr's out there but they aren't you and they don't know how various things that they suggest will affect you. For this reason I believe that we have to learn as we go, only taking things we are absolutely sure will benefit us. If it was me, I would find a Dr prepared to work with me. I would then take there advice and go home and research what they recommended and take things from there. Sometimes you can be recommended things that send you out of whack for ages.

    In no way have I accomplished the list at the top but it is what I work towards daily. Blood sugar balance for me has helped me sleep better - some nights 7 hours, some nights 9 hours. I now have such severe gut issues that I take very few supplements. And I know without a strong gut there is no point in drowning in supplements as they'll just be excreted.

    I would always work slowly with any changes and keep as open minded as possible so you can hear what's going on if your body has an adverse response.
    justy, Hanna and xchocoholic like this.
  6. xchocoholic

    xchocoholic Senior Member

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    Plum and I are on the same path. Keep in mind that we're all different in some ways.

    Fwiw, head pain can be from a variety of reasons. Ice packs on the base of the skull and shoulder area may help.

    If they're migraines looking for a trigger is a good idea. Possible triggers are listed on the web.

    I just happen to have Paget's of the skull and this flares with lactose monohydrate found in certain meds or dairy. I didn't know what it was until the bone growth became apparent.

    Many people can't take certain supplements so that's normal. We're all different here too. I take about 6 now but I've experimented with probably 50-100.

    tc ... x
    Plum likes this.
  7. TPOBPAH

    TPOBPAH

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    Brandon, MB Canada
    Why don't we start with what you're currently taking then maybe we can help?
  8. Allyson

    Allyson *****

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  9. 2012

    2012

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    Sorry it has taken so long to reply.

    I'm currently taking very little as the more I / my doctor tries to intervene or boost my health the worse it gets

    Here are a few of the things I have been taking - I have stopped all of them (with the exception of digestive enzymes*) due to various problems associated :

    anti-bacteria/fungal herbals
    anti-inflammatory herbs
    liver support herbs
    turmeric, mastic gum, aloe vera, glutamine, slippery elm, charcoal, fiber, hydrolyzed pectin
    Colostrum
    coconut oil, lecithin, fish oil/krill oil, cod liver oil
    Single strain and multi strain probiotics, fermented foods, kefir
    Gut alkalizing salts
    * Betaine HCL, Pepsin, Pancreatic enzymes and anti-inflammatory enzymes
    Boswellia Serrata
    N-Acetyl Carnitine
    N-Acetyl Cysteine
    Whey Powder, Rice Protein, Amino Acid Complex, BCCA
    Magnesium (various oral, topical and intravenous)
    Vitamin C Powder, Lyposomal & Intravenous.
    Intravenous Glutathione, Zinc, B vitamins, Magnesium, Vit C etc...
    Various Adrenal Support Herbs tablets & liquid
    Thyroid Support, liquid Iodine, kelp and Thyroid Medicine
    PharmaGABA, GABA producing Herbs, SAM-e, St John's Wort, Licorice
    P5P, Niacin +
    Taurine
    Heavy Metal Chelation
    ALA, NAC, Glutathione, Cilantro, Hydrolyzed Pectin, Selenium, molybdenum
    Calcium, Strontium, Vitamin K, Vitamin D
    CoQ10, ATP
    Adenosine
    5-HTP, Melatonin, Sleep Herbs, Sleep Medication

    Various medication including pain relief which I no longer take due to very bad reactions - I will avoid medication at all costs and there is also very little supplements I can touch without adverse consequences for my health.

    I can not tolerate much protein at all (food or supplement form). Can not tolerate probiotics or fermented food without severe neurological symptoms, joint pain and gut pain. Have paradoxical effect to many vitamins, minerals and medicines.

    The only things I can actually tolerate on the above list without negative effect is Digestive Enzymes - but they don't help anymore.

    5-HTP and melatonin were very helpful at first and then stopped working and caused worsening.
    I.V. was a little helpful at first and now I can not tolerate it.
    Also can not tolerate magnesium oral, IV or topical.
    Vitamin C I can tolerate sometimes but notice very little benefit.

    I got practitioner only supplements and try in single ingredients and combination of ingredients.

    If I drink water I will excrete it within 15 minutes and feel even thirstier. There is not a single type of food I can eat that is digested properly. Even a piece of salad greens will pass through me undigested. I've had medication pass through me complete with logo on tablet. I have tried dietary changes with very little success

    I have been to numerous doctors who 'specialize' in CFS... however there is no ME/CFS specialist were I live with the exception of Graded Exercise clinic which I am unable to even get too yet alone tolerate.

    I recognize that I will probably never be able to leave my house but all I want is to stop my body literally wasting away and enjoy some peace amongst the pain and sickness. My muscles are virtually non-existent, my bones are becoming less and less dense, my teeth are chipping away weekly, my digestive, immune, endocrine system and brain are severely malfunctioning and I'm in pain all over. I'm so desperate and yet everything that my body needs it is rejecting. I don't even know what it is like to be free of pain, have friends, a job or any sort of a life - this illness is the only life I have ever experienced.

    I'm becoming more and more sensitive to everything - foods, chemicals, noise, energy etc

    Again I'm sorry this sounds so gloomy - I am so desperate for just some relief from this hell.
  10. Tito

    Tito Senior Member

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    Perhaps your body needs time to re-ajust to a life without all these drugs/supplements.
    My experience taught me that many symptoms I experience are in fact adaptation mechanisms the body develops to cope with that illness. Each time I tried to 'improve' my low blood pressure, I had a temporary improvement followed by a major relapse for months sometimes years. It took me a while to understand that I was actually suppressing an adaptation mechanism.
    What doctors do is to 'treat' symptoms, and completely ignore that a symptom might be an adaptation mechanism essential to the patient's quality of life. They mistake cause and symptoms.
    Perhaps your body now needs time to find its balance and its coping mechanisms. I am not going to lie to you, it takes months and months. I have personally noticed that I deteriorated much faster with medical 'treatment' than without. Now I take almost nothing. It improves my quality of life because I do not have to monitor when and what I take, I do not spend hours searching for the sort of supplements that might change my life, or anything like that. It is liberating...
    The fact you are not seeking for pity is a very good sign. It shows you are practical and realistic about the situation. Why not giving your body a couple of months? Treat things that requires treatment (tooth decay, infections triggering fever, etc) and leave the rest aside. You have tried everything you could, so you will never have at the back of your head the lingering question, "what if I had done this or that?".
    Let your body guide you through the food it wants. Tomatoes do not work today? It may next month. Fancy sitting outside for 3 minutes? just do it. Feel like you need to stay in your bed for 3 days? stay in your bed for 3 days. Too noisy today? The same noise might be acceptable next week. Etc...
    Good luck.
    Last edited: Jan 14, 2014
    justy likes this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @2012 if your peeing more then drinking then maybe investigate diabetes insipidus, sip on electrolyte drinks. look into desmopressin which is a hormone that controls fluid retention and reduces urinary frequency that may have been causing electrolyte imbalances.

    If your lossing alot of muscle mass i would get sex hormones checked and adrenal hormones as well as thyroid as these can play a big part in this. Basically sounds like your in a catabolic state and need to increase anabolic hormones like testosterone and dhea.

    Next i would try and get sleep sorted maybe even a low dose tricyclic like doxepine which can help increase apetitte??

    The above i think is a good place to start.
  12. justy

    justy Senior Member

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    Hi 2012, I hear your pain and am so sorry to hear of your suffering.
    My M.E is not as severe as your at the moment, but I do totally understand what you are saying. I have had a very similar experience - nearly everything I try has made me worse, even if it initially helps it will only set up a new problem. I have just had 5 months off of all supplements and my stomach has improved a bit and other symtpoms have calmed down so that I am now back to 'my normal'.

    The only supplement which has really helped me is magnesium, but I also stopped that and now 5 months later my awful night time leg and foot spams are back, so I will go back on the Mag.

    Every time I follow the advice of a specialist doctor I get into trouble and then they seem surprised that I have jad so many side effects. For example I was told repeatedly to do paleo diet and yet it made my gut pain horrendous and the nausea was unbearable. Despite most people thinking it is bad for PWME I now just eat a pretty normal veggie diet - cheese, white bread, vegetables of all sorts, rice, pasta and small amounts of fruits, lentils and nuts does me fine and keeps me ok.

    We are such a weird bunch aren't we? At one point every supplement I took made me feel horribly wired and an M.E specialist even told me this wasn't possible. But it was for me.

    Sometimes we just need to give in and stop trying for a while to see where our baseline is, but as others have suggested this can take months.

    Take care and keep strong,
    Justy x

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