Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

What to do

Discussion in 'General ME/CFS Discussion' started by digital dog, Aug 21, 2015.

  1. digital dog

    digital dog Senior Member

    Messages:
    593
    Likes:
    895
    What do you do when almost everything makes you feel worse but you cannot continue to live feeling so bad?

    I try things and then swear that i'll never try another drug/supplement/diet again but then the reality of my existence is so torturous that I begin to think that there must be something out there that will improve my symptoms...not cure but improve.

    Everything I try makes me feel dreadful, has disastrous results, or will improve one symptom at the detriment of another. Examples are that thyroxine gave me energy but gave me anxiety and insomnia, probiotics make my digestion better but make me disorientated, even cutting out sugar makes me feel energised but then I cannot sleep. I could go on and on and on and on.

    Are my only options enduring this hellish existence or suicide?

    Do we carry on trying things incase we hit jackpot?

    I'm scared as I seem to have such an obscure reaction to things. I just wonder why I can't be like any of the other millions who try something and find some relief. I have friends who are menopausal and they suffer for a few months, go on HRT, or some sort of magical bio-identical concoction, and then they are fine. It suddenly dawns on them that they don't like the inconvenience of waking up throughout the night, look on the internet for a few hours, see their GP in their lunch hour, take the medication prescribed without worrying whether it will make them lose their mind and then live happily ever after. Ta-dah!!!!

    All I ask for is one thing to help me, not cure me, just help. Is that really too much to ask after trying so much?

    Sorry just venting and feeling sorry for myself and overwhelmed and bitter and guilty and grief stricken and frustrated and disappointed and sad and......

    Digital Dog
     
    leela, maryb, Hutan and 2 others like this.
  2. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,550
    Europe
    I'm like you, the weirdest reactions to pretty much every single thing I've tried. There's more people like us on here. That's the catch of this illness, you can't just try whatever to see what works, cause you usually end up worse, or worse for a while and then back to really really bad. I have no answers, just thought it might comfort you to know you're not alone in this.
    No prob, that's what forums are for. We all feel sorry for ourselves sometimes, and quite righteously so. But usually after that there's days where it all seems less gloomy. That's what I focus on when things are bad. Hang in there, and keep venting whenever you need! :hug:
     
    Hutan and Tammy like this.
  3. jess100

    jess100 Senior Member

    Messages:
    145
    Likes:
    194
    I see from your other posts that you've tried many, many things. Unlike Effi and you, I don't have such a strange reaction to most things, but I DO share your frustration. Doesn't it seem like every article says, "ask your doctor", as if that would just yield an answer? The truth is most of us here and many, many thousands of others on thryroid forums, Lyme forums, Sjorgren's forums, hair loss forums, etc. go to at least 8 doctors and spend about 8 years getting a diagnosis (these are not statistics-just my take on what I've read) It would be interesting to do a poll on this. "See your doctor" is a ludicrous statement to me.

    I think in a previous post you said you tried acupuncture without success (or it made you worse) That happened to me as well. A "gifted healer" acupuncturist was not able to help me and finally admitted that. When I discussed this with my NP he said there were better practitioners in the area, and that's possibly why I got no relief. That was something to think about. Was the acupuncturist really good? Or did someone just have luck or a coincidental relief and thinks that acupuncturist is a "gifted healer"?

    I don't want to send you on any more wild goose chases, but I will caution you not to rule out the treatments themselves because it could be a crappy practitioner, crappy diagnostician, crappy whatever. The same goes for supplements-see Freddd's post about B12. After trying many of them he found a FEW that work well. This means the vast majority of them (at least for him) did not work well or did not work at all. Freddd could have concluded that B12 did not work. But that's not true-certain brands of B12 did not work for Freddd, and certain brands did w. Recently a study found that supplements from Walmart didn't contain what was stated on the label (I want to say, "no sh**!! Who would trust Walmart to care about the quality of supplements?) I don't trust McDonald's to tell me about healthy food....I don't trust the drug companies to tell me what drugs I need.....Call me kooky.

    So, be cautious about throwing out the baby with the bath water. There could be things out there that do work for you-and for sure there will be other things that make you worse. Do you have any kind of diagnosis? Some things are missed by the doctors almost all the time (Lyme, Babesia, thyroid that I am sure are missed frequently!) If Effi and others here have similar reactions these would be good people to hunt down on this forum, as well as finding who was able to get a diagnosis and from which doctors.
    You sound exhausted from this, and I wish I could be more help to you.
     
    whodathunkit, maryb and helen1 like this.
  4. ahmo

    ahmo Senior Member

    Messages:
    4,329
    Likes:
    6,507
    Northcoast NSW, Australia
    Welcome to pr digidog. Now that you've gotten that off your chest, we can begin problem-solving.:)It's really hard, living with this illness. Studies have documented that it's harder than all the other major chronic conditions. This is a great excellent place for support, to be able to share how terrible we feel. Don't miss the Community Lounge forum, including ME moments and joke of the day.
    ...oh, I see you've been around awhile...well, it took me a year before I saw there were other spaces.

    For me, this has been the case. For lot's of us. I doubt you'll find a person on here who doesn't have drawers full of things that didn't work. But there's a citizen science effort going on here. Once you can state your symptoms, there willl be responses. Some of them will conflict. But if you follow a search trail leading on from those suggestions, you can narrow down what sounds likely to help and what, based on everything you know about yourself, you wouldn't even bother to consider.

    The first thing that worked for me was GAPS diet, going gluten and grain, dairy-free. I was very fortunate to have wins with every protocol I used after that. There were still individual things I tried that didn't work. But 3 years on and I've resolved all the worst symptoms. There have been any number of improvements that came from adding or removing one particular thing.

    See above. We're in society and medicine's too-hard basket. We've been left to find our own way onto a path of healing.

    [​IMG]
     
    Last edited: Aug 22, 2015
  5. digital dog

    digital dog Senior Member

    Messages:
    593
    Likes:
    895
    Thank you for your replies. I am gluten free. I am not sure it is doing anything although I will keep it up to make sure. I think the problem comes when you have to give things so much time to see if they are truly helping you. You also have to do one thing at a time to get a valid picture of what is going on.
    I won't give up trying things but it does scare me.
     
    maryb and Effi like this.
  6. maryb

    maryb iherb code TAK122

    Messages:
    3,499
    Likes:
    3,070
    UK
    I'm more like you than most, I have tons of supps that I can't tolerate. I've got the smallest empty capsules to decant them into, even that is a massive chore and then I still get a reaction so don't carry on. Its so dis-heartening and soul destroying, so I do understand where you're at. But I do believe there is something that will help everyone albeit maybe a little, its just a question of finding it. IV abx helped me but upset my gut and re-activated CMV,EBV,HSV so I got a massive pay back for some improvement. Do keep trying, some on here take such minute doses of supps, think that is the only way for the likes of us. Would it help to do a stool test to check on which bacteria you're deficient in?

    I'm very much in the camp of get the gut right and that will improve the immune system's ability to function properly. Buts that's this month.......depending on how I feel I could be off for IV abx again in 2 months:)

    BTW I'm gluten, dairy,sugar,legume free as well as lots of other 'frees' I have tons of food intolerances.
     
    whodathunkit likes this.
  7. whodathunkit

    whodathunkit Senior Member

    Messages:
    1,158
    Likes:
    1,469
    :thumbsup::thumbsup::thumbsup:

    Never EVER give up! :)
     
    maryb likes this.
  8. digital dog

    digital dog Senior Member

    Messages:
    593
    Likes:
    895
    It is soul destroying...and expensive.

    I won't give up Whodathunkit but every year that passes and every new health regime that doesn't work chips a little more from me. I am definitely not the optimistic person I used to be. Ironically I was happier ten years ago when I was a lot more sick as I had more hope. Hope is so very very important to us all.

    That being said, I have been gluten free for three weeks now ( I previously went gluten free but I was very sick, on all kinds of drugs and doubt I could have noticed any changes I was such a mess) and although I don't feel any better I have been doing proper formed poos (sorry) for the last ten days for the first time in at least three years. I think that may mean that being gluten free is beneficial to my digestion (it has to mean something) which may improve my health at some point. I've made a point of not changing any other part of my diet and to be honest since going gluten free I may even be eating worse (more sugar) as I wanted to see if it was clearly the gluten removal. This is really the first time that something has actually had a noticeable impact on my body; I feel no different but surely it must mean something positive?

    I have high hopes for selenium too. I was on it for two weeks recently but I got very sick. I think it was the glutamine I took at the same time though so I will go back on the selenium soon. Glutamine made me feel like I was on an edgy sort of tranquilliser; like speed and valium rolled into one. It wasn't pleasant to be honest but it seems like the thing to take if you want to heal your gut. I'm definitely not trying that again.

    So I have DHEA (or maybe a tiny bit of testosterone) and LDN to consider trying. Neither of which make me feel very comfortable. I may also try digestive enzymes which are probably less of a risk and worth a shot.

    x
     

See more popular forum discussions.

Share This Page