1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Less is more?

Discussion in 'General Treatment' started by Carrie-Louise, May 23, 2012.

  1. Carrie-Louise

    Carrie-Louise

    Messages:
    24
    Likes:
    7
    This is my second post! So, hi everyone.

    Does anyone think that we are better off avoiding as much medication as possible, given that all meds put some strain on the body and can bring their own side-effects? From my contacts with the medical world I'm aware of the massive high rate of 'iatrogenic' illness (that is med-induced illness) that is considered acceptable, and it concerns me. There are obviously cases in which the risk/benefit ratio makes taking meds essential, but when it comes to an illness like ME/CFS, that is so complex and can so easily be worsened by ingesting toxins, I have the feeling less can definitely be more, and the benefits of being toxin-free can, in some cases, end up oughtweighing the other benefits of being medicated.

    It certainly feels that way for me. I tend to take ibuprofen for pain and as an anti-inflammatory and very occasionally propranalol for palpitations, but have resisted all other suggestions - including SSRIs, because I can see them creating more problems than they solve. I already feel 'poisoned' when I'm at my worst, and taking too many meds seems completely counter-intuitive.

    I'm interested in other people's thoughts and experience.
     
    merylg likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,291
    Likes:
    6,359
    Albuquerque
    Hi,

    First, welcome! I hope you find good information and support here. You will definitely find good people!

    As far as meds, I think it really depends on what meds you take and whether they are a good match to lab testing and symptoms. True, very few have found much benefit from SSRI's, yet some drugs may be necessary if you test high on viruses, bacterial infections etc.

    I agree that just downing a bunch of drugs aimed at symptoms is usually not the best long term approach, but if you can find a doctor that really understands ME/CFS, does a lot of testing for the things that other ME/CFS specialists have found to be common abnormalities, some targeted drugs (like anti-virals for instance) may be hard to avoid.

    Whatever the cause, we seem to have developed immune dysfunction and have collected a lot of viruses and bacterial infections (in the gut for instance). These are hard to eradicate without some kind of drug intervention. Also, immune modulators have been used with success by some specialists.

    Best wishes,
    Sushi
     
    taniaaust1 likes this.
  3. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    I think we have to weigh up the pros and cons far more carefully than most people. ME is a highly complex illness that affects a vast variety of systems, so we have the potential to end up on huge amounts of medication. It's always worth becoming well-acquainted with the risks attached to a new med, especially if there is a risk of addiction or side-effects can be quite subtle. To a lesser extent, I think all of this is true of supplements as well.

    Partly for financial reasons with the supps, and mainly for the reason above, I'm trying to keep my meds relatively streamlined as well. If I'm not sure that something is making a blind bit of difference, I don't hang onto it for years on end, I ditch it after an appropriate trial period, and keep an eye on whether my symptoms change.

    With regard to painkillers, the mild ones don't work on me, and I can't tolerate NSAIDs (anti-inflammatories) at all apart from as a dermal patch. Co-codamol with valium works well for me for muscle pain and migraine, but I only take it rarely due to problems with side-effects (oversedation and constipation, mostly) and because they are both highly addictive meds.
     
    merylg likes this.
  4. caledonia

    caledonia

    Messages:
    3,039
    Likes:
    1,711
    Cincinnati, OH, USA
    Try magnesium for the palps, unless they're very severe. I believe propanolol will make you more tired.

    In general, my view is, if you can find something that's not a drug which is effective, then do that. Otherwise drugs can have their place (assuming they're tolerated).

    For many reasons, the ultimate solution would be to work on restoring methylation.
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    I only take meds ONLY if there is no choice. Antibiotics for infections when they happen etc. Antibiotics are HORRID for you but no choice sometimes.

    I take many great supplements for CFS and POTS and keep toxins out. That has been what made my CFS be no problem now. POTS is improving greatly also.
     
    merylg likes this.
  6. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,247
    Sth Australia
    I believe the fact I wasnt able to get meds when I was at my worst.. may of played a part in helping lead to a remission. (I ended up in a remission for several years).

    I'll explain this further... Had I gotten the meds I really actually did really need at the time (I was in unbelievable pain but I had bad doctors), quite possibly I would of then used them to numb out the intense pain I had and it would of probably lead to me trying to do far more. (I wont mention name but I can see that going on with someone at site who has been getting worst.. using med "bandaids" leads to being able to do more, which can lead to a worsening of whole condition..
    The same thing applies if using stimulants.. end result could be a worst state thou they helped at the time.

    Being so so sick and having no doctor which would treat me.. lead me to being forced to learn good pacing etc far better (so yeah, the no meds indirectly may of lead to more chance of getting the remission I ended up having).

    Maybe an important thing is working out good pacing and lifestyle change, before experiencing "artifical" betterness while continuing on in the lifestyle which is making one sick.

    .....................

    Nowdays I now do have a doctor treating my symptoms and would never want to go back to how I was with being left suffering real bad due to not being treated. My life quality without meds and supplements is MUCH POORER to the point where I can only do half of what Im currently doing... and I cant get back into remission again like I once was (but that was the case before I started taking things, so its not the things I take now stopping it from happening).

    I dont think I can do harm to myself now days by blocking symptoms out via pain killers or by stimulants as Im well aware of my limits. (I can nowdays judge if im over doing it or not, by going by the time and the actual activities Im doing, so dont need symptoms to tell me to STOP).

    I also dont take anything "just cause its supposed to be good for me". Everything I take or trial has a very good reason for it. When I trial something I have a plan before I even start the trial, of how long the trial will go for, based on how the drug/supplement is supposed to work.. anything I cant notice helping or there isnt a very good reason to be taking, I do not bother to continue with.
     
    merylg likes this.
  7. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,535
    Likes:
    2,093
    London
    I react so badly to medication that I avoid it unless I feel that there is no alternative. That said, if I had not been prepared to experiement then I would not have found the drug treatments that work for me and help alieveate symptoms.

    It's like saying that some supplements and some foods make me worse so I'll eat as little as possible. Not bad advice but one that may not return the maximum functioning I can get out of my body and the least horrible symptoms.

    The trick is I think making an analysis of what we do, eat, driink and medicate ourselves with based on how other patients cope, how well we have done on similar things, what tests we have had and what medical evidence there is available.

    Not all meds are putting a strain on my system.Some meds are helping me. The same can be said of foods and drinks and lifestyle choices.

    Another factor to consider is what is happening when you do avoid medication. Are you getting better over time or worse? I've had years of little medication where my baseline of activity has plummetted. Years of finding something that helps and improving my functioning and years of things that have harmed me.

    We just don't have enough data to determine what we will react badly to. Personaly I am happy to try new things and give them up if they cause a bad reaction (like SSRis which are a disaster for me and too much ibupofen which my gut reacts to). It's a hard thing to weight up.

    Overall I choose to experiment with drugs as it has been over 25 years, I wasn't getting any better and improvements have come to me by trying new things.
     
    merylg likes this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,415
    Likes:
    4,809
    australia (brisbane)
    i think symptomatic treatment helps with certain things like sleep and pain when its bad, i think anything energizing all the time will produce a pay back. like already mentioned, meds to go after infections i think is going to be the main treatment for many of us. Dammed if u do and dammed if u dont.
     
    taniaaust1 and merylg like this.
  9. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    People who are avoiding meds for sleep and pain - please remember that sleep deprivation and pain are very bad for you, and often likely to be far worse than the effects of the medication. It's a balancing act. It's not as hard to work out what to do about the immediate side effects, e.g. if opioids make you constipated, can you handle that in a fairly non-invasive way (e.g. flaxseed or magnesium tend to be much healthier than prescription laxatives), and if a combination of meds makes you likely to faint, you reserve that for when you're in such pain that you would rather remain flat out in bed while the effects where off. The tricky part is the longer-term effects. Addiction is the main one to be very, very careful about, as coming off an addictive med can leave you far worse off than you were before you started it, and while you may think you can skip that problem by staying on the med forever, plenty of the addictive ones stop working after a while. Then there are issues such as potential liver damage, or stomach ulcers from NSAIDs. All issues to discuss with a very good doctor.
     
    taniaaust1, merylg and heapsreal like this.
  10. Carrie-Louise

    Carrie-Louise

    Messages:
    24
    Likes:
    7
    Thanks for the replies! I do totally agree that meds are sometimes essential, and would hate to deter anyone from taking anything they really need. We just have to be very aware of the potential side effects I suppose - even more aware than non-ME sufferers. Personally, if a symptom isn't dangerous, I tend to opt for trying benign things like aromatherapy or gentle herbal preps and would only go for something more aggressive if they don't work.

    Sallysblooms - I know! Antibiotics can be horrendous. I had a life-threatening abscessed appendix a couple of years ago and after surgery I was put on mega-antibiotics that actually felt like they were killing me! My mouth burned so much I could barely swallow, I had constant diarrhea (not cool when you can hardly move off the bed :)). I took a unilateral decision to stop them as I knew that, whatever the doctors said, they were causing more sickness and weakening me more than they were helping. Instead I actually consulted a healer (never done that before), and he gave me one of those flower-remedies - and it actually made me feel better almost instantly! It really - honestly - almost felt like magic.

    BTW - for a few month after the appendix thing I had no ME/CFS symptoms at all. Which confirms to me that it has something to do with autoimmunity.
     
  11. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    But important to remember there have been people with ME with severe pain who have ended their lives because they could not get adequate- or any- pain relief. So I get very upset when I hear about people who cant get any doctor to help or treat them for severe symptoms. It should not be that way.
     
    SaraM likes this.
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    WOW, how wonderful that the healer helped you!
     
    Carrie-Louise likes this.
  13. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    Unless everyone has the exact same illness it is impossible to say that avoiding medications would be better or worse. And of course we are not all ill in the same way.

    Medications have brought some to full remission when a specific pathogen was identified and treated. Others may have chronic symptoms which, try as they have, can not be managed without medications. That is why I get any icky feeling when some people are so anti med ( no one here, just in general) because some people can not LIVE without pharmaceutical treatment, and have died because it was denied them.

    Sorry did I go off subject?
     

See more popular forum discussions.

Share This Page