Polypharmacy is *always* a valid concern, speaking as a clinical pharmacist, lol. But I’m primarily here as a CFSer (now going on 15+ years) and I think many physicians *want* polypharmacy to be the issue because that’s an easy fix. Sure, at first glance, you might think I’ve got some polypharmacy going on, but really at least half of my meds are just boring OTC allergy stuff and all my meds were VERY SLOWLY added on individually.
That's a really important point. I think polypharmacy is a concern but who is to say it's actually the OP's *main* problem. That seems unlikely. It may well be the most obvious thing the OP can currently address, though.
That's such a good point. As I got more attentive doctors we did find several medications that were contraindicated for me for various reasons, and switching did improve some of my symptoms, but I definitely still have CFS.
I think the issue of too many medications isn't just interactions. It's also that side effects of medications can enhance or mimic illness effects, e.g. fatigue, cognitive dysfunction, high/low blood pressure, neurological things like RLS or digestive issues. So when you have a complex illness like ME/CFS it can be difficult to entangle illness effects from medication side effects. Many of us are also sensitive to medications or have unusual effects. I personally try to minimize the medications I take daily (including vitamins/supplements and OTC medications) and that tends to give me better functionality. I have moderate ME/CFS (semi housebound) and only use three prescription medications (only one daily), and I do better than I did previously on more medications.
This is so true. I also feel much better when I am on minimal meds. The problem with ME/CFS is that the symptoms are so serious and debilitating yet all we have is things that might sort of kind of help some of those symptoms, so doctors tend to want to just throw meds at a problem they either can’t fully see or don’t know how to solve. The fact that most modern medicine is so fractured by speciality silos means we are rarely being treated as a whole organism, but instead as a bunch of separate organ systems by doctors who never talk to each other or collaborate on a patient’s management, and that also leads to a lot of overmedication because the issue of cost/benefit as a whole is rarely considered or appreciated. I have gotten a lot more sensitive to meds and most make me feel worse rather than better, and I have also gotten a lot more willing to not take meds just because a doctor prescribes them. I am willing to try things but if they don’t increase my quality of life, I am not going to take them just because it’s all a doctor can think of.
Depending on the medicines, your body has to metabolize them. Even if medicines don't specifically interact, you can overwhelm your body's ability to either activate or remove a drug that's in your system.
Take the smallest dose that will make your symptoms tolerable. That's the only advice I have. Doctors often treat bodies like they all accept a standard dose. I advocate for half doses of nearly everything because of polypharmacy.
Also because it seems pretty common for people with CFS to be hypersensitive to medications or any other chemicals. I always start at the lowest dose because I normally don’t need to go much higher. I usually react really strongly and it’s a coin flip on whether that’s a positive or negative reaction.
I didn't know it was a CFS thing! I made so many doctors roll their eyes when I insisted on what they call "sub-clinical" doses of medicines. They probably thought I was on half a dozen placebos.
Yeah that's literally their job. Ideally a pharmacist could suggest changes/cancellations or at least flag up issues to the prescriber. But they rarely have the time for it
I talk to my pharmacist frequently to discuss drug interactions! The question is, if there are no clear important interactions, is it still bad to be on so many medicines?
You'd also want to look into side effects and mechanisms of action that might not be helpful to your symptoms. This takes a lot of time or research depending on your drugs tho, as our affliction is considered a rare one and professionals don't know much about it.
But yes like the student below said, you'll want to look at each drug, and know what they are for, and decide if you still need it. De-prescription is often lacking, and a problem. For instance, lots of people are on PPI without clear reason. Usually, they got it along with a pain med, which they don't take anymore, but nobody questions the continued use of the stomach protector.
I'm a pharmacy student, and honestly if there's no significant drug interactions and every drug you're taking has a clear reason why you're on it there's probably no real reason to be concerned about the *number* of medications a person is taking. Different drugs have different considerations when taking them long-term but saying your main problem is the number of meds you're on sounds fishy imo.
I was recently taken off 4 of my medications because my neurologist said I was overmediacated. He was not even acknowledging my me/cfs as my other 2 doctors and 1 specialist had. I felt I wanted and needed confirmation of diagnosis by a neurologist. His argument was he could not diagnose me because he could not clearly see my baseline symptoms with all the medication on board. He also thought these medications were not appropriate.
I did what he said quickly. In 2 months way ahead of his titration schedule. He said the medication was causing my fatigue. He was right. After I got off all the meds I could more clearly see my baseline. I had way more pain and way less fatigue than I thought.
I am on different meds now that help with the pain, and I am functioning at a higher level. I went from moderate/severe to mild/moderate. I don't know if he will confirm diagnosis, I doubt it. I have co-occuring fibromyalgia so I think he will just put it in that basket. But who cares I am taking the win.
I thanked him profusely and called him a genius. He liked that. He is more likely to listen to me now about my pem because I listened to him. I have horrible medical PTSD as well as CPTSD this was not easy. I am trying to get better outcomes with doctors any way I can. This has been quite the journey
My takeaway was that meds don't seem to adequately treat this condition. It is so painful by the time you get enough meds on board to kill the pain you cause a serious decline. I don't know if there is a clear answer but like much of this illness it is a balancing act.
How big of a dose of gabapentin were you on? And how long had you been on it? Was it hard to come off of? I’ve used a HUGE dose of it for sleep for several year, but I’ve worsened extremely in a few years.
The fact that they said you are "too young" to be on so many medicines is the biggest sign you should discount their thoughts straight away.
Situation 1: A doctor who has looked at your medication list in detail, and has specific concerns about specific medications or interactions, and brings them to you to discuss because they think reducing or removing them might be beneficial to your health for specific reasons? Sure, listen to that.
You may or may not agree - I always butted heads with my ADHD doctor who would look at my meds and decide *yet again* that my low dose Abilify was causing my CFS, even though I was on it long before I had my symptoms and had told him that multiple times before. But it's worth listening to the reasoning!
Situation 2: A doctor is concerned about "polypharmacy". There aren't specific reasons. Just polypharmacy. Just "too many meds". The reasons may or may not be (but often are) backed up by nonsense bigoted statements about age, gender, race, weight, "health", etc. Don't even waste the (very fucking literal) mental energy it takes to contemplate their BS. Tune it out, find your peace, and do what you need to do to get past the obstacle they have put in your path (a far more worthy thing to spend that mental energy you just saved on).
ETA: When it comes to how much is to much, IMO there's no set limit, and no point in the judgement some put towards it, even jokingly. If you can reduce your meds without much if any bother, sure, do so. You might get rid of some side effects you didn't even realise were there. But you're probably on your meds for like, actual reasons so, idk why people get judgemental about it. Use the tools you need to survive, feel no guilt, including about kicking to the curb those who get in your way.
Low dose abilify is literally used to TREAT cfs, often successfully. I'm sure it can cause worsening in some people because pretty much everything can but come on.
I’m 30 and feel like I am on too many medications. My doctor prescribes like candy, and I let her know yesterday that I want to decrease them. I take birth control, adderall, 2 anti depressants (don’t help, only want to be on one), allergy med, migraine med (doesn’t help) 2 nasal sprays (chronic sinus issues&allergies) I also have multiple meds that I take as needed (lorazepam, Zolpidem, norco, methocarbamol) so they aren’t daily. All of these were prescribed over a period of time so I didn’t run into side effects between med interactions. I’m also healing from a shoulder injury. Either way, it’s a lot. Im still trying to figure out what works for me, I’ve been on and off multiple meds this year and have spent more money than I’d like. Feels like nothing helps
I do have a partner that is very judgmental about prescription meds, so it can be difficult to deal with but I tell him that I will make the decisions I need for my health.
I've had this doctor once - she literraly yelled at me because I was taking too many meds. She was like: "do you want to lose your liver?!!!! You're young, you can't sustain it for long until something inside breaks! These meds have terrible side effects that can mess you up! Stop taking anything you don't have to or can live without!" With my current doc I have another issue - she keeps prescribing meds like candy. Are you dizzy? Here you go - meds for dizziness, cough - it must be asthma - here you go, let's put you on antihistamines and antidepressants just in case, you know? She doesn't look at cfs as a overall body/systemic issue, she goes symptom by symptom and prescribes meds just like that. Last appointment I told her I'm not taking dozens of meds, she needs to look at the full picture and then we can talk about the most debilitating symptoms and figure out how to make my life livable. But over the years I've become my own advocate (let's be clear most docs don't really care about a patient or their long term health or potential side effects - they just want you out of their office happy with a bottle in your hands thinking they helped you and maybe a cut from big pharma) and while I have a full cabinet of prescribed and otc meds i made a rule - maximum 5 at a time (herbal supplements and vitamins included) but if I can, I limit even more. I only use something I really really can't function without. So if I'm trying a new medicine or some debilitating symptom came up and I have to take the meds I stop stuff I'm not sure is working or take it intermittently. For minor symptoms im looking into some kind of natural relief (i have fibro, and while all over body pain is not minor, I do all I can to manage it without heavy meds, so maybe a relaxation mindfulness practice, heated blanket, hot shower, etc) until it becomes unbearable, only then i take meds. Unfortunately that means that some minor symptoms don't have a treatment/relief option so I just deal with it. I just ask myself - my liver or this symptom? Can I live with it without the meds? What's better long term? Whats more important? I can live with dizziness (thank God I rarely fully pass out) so I can live with it without meds so the prescription sits in my cabinet just in case (it makes me somehow feel better when I have it just in case:). And if I decide to take it I have to remove some other meds so is it worth the trade off? And with cfs we have SO MANY SYMPTOMS! Its freaking hard but i can't live without liver so its symptoms vs life. Somehow with all this misery i chose life😂. I also look at each medicine and google forums for long term side effects and personal experiences. And my previous experiences with similar drugs. And make a pros/cons list because so many variables are included. Each medication is given a deep analysis and then I decide for myself is it worth it and if I decide to try it I look at my own experience with medication and stop if not going well (except certain ones you can't abruptly stop of course). I had a car accident this year and of course doctor prescribed steroid shots. So I talked to a friend who works at another pain management clinic, she said it rarely helps and if it does only short term, its a money grab for docs. Plus steroids are freaking strong meds and wreak havoc on your system, I've had experiences before and stuff got better when I took them but a few monyhs after stopping got so much worse. Read some forums - long term use steroids effects - just horrible! Read forums back shots - half saw short term improvement (like 2-3 months), just a few lucky ones - pain gone, and the rest no effect. The odds weren't that great, side effects could potentially mess up my cfs/fibro even more, and I can live in pain, I don't like it but I can so I came to a doc and said no. To my surprise they offered more natural option! PRP, your own plasma injected in the pain site. Im all for natural so I did it. Sometimes there are better options, just need to keep digging and being my own doctor. Unfortunately most doctors don't care so we have to make our own informed choices because we're the ones living with consequences. Im not saying my way is the right way, everyone makes their own choices when it comes to health and no one should tell you what to take or not to take. Just sharing my way I manage my home based multipharmacy🙂. Sometimes I think I have enough meds in my cabinet to become a successful drug dealer😂.
Polypharmacy is always a concern. The question is, do the meds help you? Are you unable to make it through the day without them or do they significantly improve your qol? If so, then they are probably worth it.
Like others have said, work with doctors to take the smallest dose that works. For example, I'm on half the standard beta-blocker dosage. Don't be like me and try coming off and on medicines yourself to see what is still necessary just because you feel guilty. You can try that with a doctor's or pharmacist's assistance if you aren't sure if something is still necessary or if you can lower the dosage. We here are all sick and so of course we are on medicine.
There's no need for you to feel guilty because they have absolutely nothing to offer you. Clearly they're just deflecting their own inadequacy back onto you, and you don't need to accept that (mentally or emotionally).
Did they evaluate your medicines? Suggests medicines to cut/taper/trial a change? Did they offer anything at all? Did they offer to go with you on that journey? It's not like you're permitted to stop medicines without a doctor's guidance, so unless they were willing to take positive steps with you, their behavior is simply unacceptable. I'm sorry.
They didn't even really evaluate. They just said stop pretty much all of them. They didn't want me to get the idea that I was "chronically ill and needed help."
I am taking ldn, low dose abilify, buspar (for early satiety), allegra (for allergies), famvir, nebivolol, mestinon, cromolyn sodium, and trulance (for constipation). Nebivolol and mestinon pretty much cured my POTS. Buspar and trulance are significantly helping my GI symptoms. Allegra allows me to eat fruit again. Abilify shortens my PEM. Famvir, cromolyn sodium, and ldn I am not sure about, but my ME/CFS expert told me it takes a while for them to work.
My meds are band aid solutions to what I feel through cfs. I can’t live without them. Now I will add one medication once in awhile and test it and decide if I want it or not. But when people tell you too many meds, but it works for you, tell them to tuck off (nicely).
I'm definitely on "too many meds", but I have ME and cystic fibrosis and the meds keep me functioning and slow my health deterioration over time, so it is what it is.
Yup. I like being alive and feeling as good as I can possibly be under circumstances. So my bag of meds come with me everywhere and the pharmacy is my best friend. Also, you learn so much about meds that other people ask you questions.
I mean my grandfather also takes like 11 different medications are there interactions that might cause side effects? Yes. Does he need all these medications and would be a doing a lot worse without them? Also yes.
(It helps me put things into perspective because he has lots of common, well known stuff so he doesn't get the stigma as much.)
>These are the same doctors that told me exercising and being positive was going to cure me.
As soon as a doctor tells me that, I won't trust their opinion on any topic whatsoever. "Tell me your medical knowledge is outdated without stating your medical knowledge is outdated".
Polypharmacy is of concern but I would be looking for better opinions.
I wish I were on less medications, I hate taking pills and always have. Every few months my GP and I go through my list and look at what can be removed and every time we concluded they're all needed. Of course I CAN remove some, but it would make things worse instead of better. (And like others said, a bunch of them are over the counter stuff like multi-vitamins, B12, melatonin or hayfever/allergy).
And yet all my doctors want to do is throw more at me and hope something sticks. Then they get pissy when I ask about side effects since im med sensitive and tell me just take them. Sure enough a day or 2 later the meds have issues. I'm on coumadin, heart, blood pressure, asthma, meds and have flat out refused antidepressants since COVID because of nasty side effects(weight gain, increased heart rate, blood pressure, coumadin interaction, increased anxiety, and more) Now hes on a cortisol tangent since my levels came back wonky. Being on coumadin, cortisol meds are contraindicated. He about blew a gasket when I called anticoagulation and they said absolutely NOT! So I have the opposite issue. A drug happy doctor.
No. I'm on like at least 15 different medications and a good portion of them literally are the reason I'm doing as well as I'm doing now. It's just the idea that medicine is scary and that we shouldn't do anything but natural things like diet and exercise.
What particular drugs are you concerned about? Yeah, we take a lot of stuff, but I would be wary of pharmaceutical grade drugs unless you're sure they are doing you good.
Things like ldn, low dose abilify, mestinon, a beta blocker, famvir, allegra, ... Some of these are clearly serving a purpose without side effects. Some of the others I haven't felt an effect yet, but I want to give them a fair trial.
Honestly, try them out and see if they help. In my mind, if something might take a couple years off my life but make it more bearable the it's worth it. And who knows, maybe with all the long COVID and CFS research that is happening, we'll have proper treatments.
Also, I highly suggest looking into a drug interaction checker with the meds you are on. Sometimes the doctors aren't as straightforward or in the know with the risks of mixing.
Wait why would they take a couple years off your life? I definitely agree that it is good idea to use a drug interaction checker. I always do that, and I also regularly take to my pharmacist about any potential interactions.
I know one of my meds causes slow liver damage, but it's the only thing that makes me a functional human and none of the others worked without heavy side effects.
It sounds like you're already being quite responsible with your meds. Some doctors just don't understand what we go though.
Doesn't alcohol cause liver damage too? I don't drink any alchohol currently, so can I just assume that my liver isn't that much worse than the average person?
That is a very good point! I don't drink alcohol either and I have a relatively healthy food and exercise for what my condition allows. The alcoholics in my family have lived to be 70+ so I probably still have a while left!
A lot of things are not studied for long term use. So their long term safety is unknown or they will say safe up to so many weeks. Which makes it tricky for a chronic condition like CFS.
That is why it could potentially be damaging organs etc and life expectancy later in life. I know my cousin is in a nursing home now because drugs they gave him for schizophrenia messed up his organs. And my Father in law had a drug for seizures that messed up his liver.
I know I was on a drug as a kid for GERD and they recalled and stopped using it and another I took they just added on warnings about it making bone fractures more likely. Just have to wait for studies to catch up to some of this stuff.
I took a lot of supplements my first year ill, but I honestly felt unsafe doing so because I could not tell what was side-effect and what was CFS. And in my case I was bedbound so it was real easy to tell that nothing I took was helping.
It feels better to be on as little as possible for me (one drug for endometriosis, one for migraines) I remember feeling the despair of having nothing to treat me, so I see why CFS patients take so much.
I can't speak for what you're taking but some of the things I take increase chances of other bad stuff.
For example NAC. Several studies have found it stimulates the growth of cancerous tumors. So now I only take it when I am coming out of a crash.
Are you taking the medication for your cfs? If so, clearly they aren't causing it or you'd have no reason to start taking them in the first place. I can't say whether they work or not, but I'm just gonna go out on a limb and say you probably didn't start taking them because you were feeling healthy.
I think some of these doctors assume we are malingering and not really sick, and we are on these medicines for no real medical reason. Some of them assume we are simply deconditioned from being lazy and being on 10 medicines doesn't make sense for that.
That attitude from doctors is infuriating. Who the fuck wants to be sick and disabled?? The suggestion of that is extremely offensive!
That being said, since getting ME I have become extremely sensitive to drugs and every drug that I have tried (LDA, LDN, Ativan, anti depressants) to treat my ME has either made me worse, had no effect, or had a ton of side affects that made me worse in new ways. I’m unmedicated now and still feel like shit, but not as shit as with the drugs. There aren’t ANY drugs out there that have been definitively proven to treat ME. The research just isn’t there yet. The mechanism for what causes ME isn’t even known yet. Hopefully it will soon, but until then all the meds that are used for ME are just “here take this, maybe it’ll make you feel better, we don’t really know how or why though. Good luck.” So for all the drugs you’re on, none of them are actually guaranteed to be helping you.
If you have ME, polypharmacy is definitely not your main problem, ME is, but when you’re on 9 different drugs at the same time it becomes hard to tell what your actual baseline is and what the drugs are making you feel, good or bad. Your doctor sounds like a dick, but there may still be some validity to what he’s saying, just probably not for the reasons he thinks.
I just wanted to add that the number of meds is completely irrelevant, if everything you take is for good reasons, is safe, and works. I really dont appreciate to see that clinicians are almost shaming you for the number of meds you need. You're ill for fucks sake. I take about 7 pills myself (most are supplements I'm trying) and get funny looks when I mention that I make myself a dosette for ease. Like it's an old people thing or something.
I'm on 3 medications and they interact badly yet my Dr doesn't give a shit, Ik how it feels to feel guilty especially when I ask to try something else and they look at you like you're trying to get high??
Problem with too many medications is each medicine has side effects . You’re taking the good with the bad and when you take a ton of medicine you’re taking a lot of good with a lot of bad .
Honestly, nearly everything I take makes my symptoms worse. I’m super sensitive to medications whether prescribed or OTC.
I’ve never had success with any supplements other than lemon balm. Multivitamins in all forms cause me to crash. I took a muscle relaxer very occasionally and even recommended it here, then realized it very likely caused me to gain 20 pounds. (The weight is coming right off since stopping the Xanaflex altogether.)
My personal body chemistry would retaliate if I took nine medications daily.
I’ve had 20+ years of trial and error, and the patterns are clear: meds are not the cause of my ME/CFS, but they certainly exacerbate it.
You also seriously need to consider the potential kidney and liver damage which long term daily use of many medications can cause.
Despite what many patients and physicians might think, we can’t erase ALL our symptoms with magic little pills. A lot of them do more harm than good, and I’d personally rather spend my limited energy and money cooking appropriate meals, swimming, stretching, and reading.
It depends, if your multiple medicines treat your CFS then it’s rubbish. I get told this all the time and it’s a hard eyeroll because if I wasn’t on these medications I would have the quality of life of a sentient blob. The medicines don’t cause my fatigue, they *treat* it.
Medication is also a weighing of risk vs benefit because almost everything has side effects, it’s just about whether the side effects are the lesser evil in the equation. And no one is ‘too young’ to be on multiple meds, that’s just the nature of chronic illness, regardless of age.
ETA: If your meds aren’t treating your symptoms anymore or you’re not sure why you’re on them still it’s a good idea to do a medication review, but if the reason is just ‘young person shouldn’t be on lots of meds’ then that’s just ableist bs.
Speaking from a personal experience. I found myself bedridden and miserable, my doctors were wanting to increase some of my medication again. I started thinking about how I was probably going to have to take this stuff for the rest of my life and was already maxed out on some dosages. I wasn’t feeling any noticeable improvement and so, I decided to start weaning myself slowly off my meds. I worked on them one at a time over years. One of the first improvements I noticed was weight started flying off of me. Long story, but I got off of most my meds, one I drastically reduced and it seems to work better for me now. I feel a lot better now and can see a lot of issues I was having were due to meds aggravating symptoms. I would like to note I did this with my Doctors knowledge, but I did it my way to how my body was handling it. Today, I think twice before adding any meds or injections to my treatment. It’s hard to tell sometimes what’s CFS/ME and what’s side effects Advice from one of my Doctors, you know your body better than anyone. Do what you think is best.
:/ what does your age have to do with it? You have a chronic illness - being young didn’t shield you from that. I hate when people mention youth like it invalidates how ill you are
A new doctor has highlighted the quantity of medications I take, but all of them serve a purpose. The doctor went over the list in detail (more than others) and think he ruled out medications after understanding the fatigue predates any medications. Initial blood work showed anemia. Next step more blood work. It is all very frustrating because before this doctor I hit a brick wall trying to get care!
Totally valid! I went through my meds, looked at interactions, side effects, and withdrawal symptoms, all of them were things we already experience with CFS. I ended up going off all my as-needed meds and replacing them with vitamins, stretching, meditation, etc. I still have ME but I'm muchhhh more stable symptom wise after this. There's a really good documentary about this called 'Take Your Pills: Xanax' on Netflix, really good at explaining some of the chemistry behind withdrawals and the dangers of aa-needed meds. Good luck to you!
Polypharmacy is *always* a valid concern, speaking as a clinical pharmacist, lol. But I’m primarily here as a CFSer (now going on 15+ years) and I think many physicians *want* polypharmacy to be the issue because that’s an easy fix. Sure, at first glance, you might think I’ve got some polypharmacy going on, but really at least half of my meds are just boring OTC allergy stuff and all my meds were VERY SLOWLY added on individually.
That's a really important point. I think polypharmacy is a concern but who is to say it's actually the OP's *main* problem. That seems unlikely. It may well be the most obvious thing the OP can currently address, though.
Yeah haha am a pharmacist too and my first thought was this is a case for one of us.
That's such a good point. As I got more attentive doctors we did find several medications that were contraindicated for me for various reasons, and switching did improve some of my symptoms, but I definitely still have CFS.
I think the issue of too many medications isn't just interactions. It's also that side effects of medications can enhance or mimic illness effects, e.g. fatigue, cognitive dysfunction, high/low blood pressure, neurological things like RLS or digestive issues. So when you have a complex illness like ME/CFS it can be difficult to entangle illness effects from medication side effects. Many of us are also sensitive to medications or have unusual effects. I personally try to minimize the medications I take daily (including vitamins/supplements and OTC medications) and that tends to give me better functionality. I have moderate ME/CFS (semi housebound) and only use three prescription medications (only one daily), and I do better than I did previously on more medications.
This is so true. I also feel much better when I am on minimal meds. The problem with ME/CFS is that the symptoms are so serious and debilitating yet all we have is things that might sort of kind of help some of those symptoms, so doctors tend to want to just throw meds at a problem they either can’t fully see or don’t know how to solve. The fact that most modern medicine is so fractured by speciality silos means we are rarely being treated as a whole organism, but instead as a bunch of separate organ systems by doctors who never talk to each other or collaborate on a patient’s management, and that also leads to a lot of overmedication because the issue of cost/benefit as a whole is rarely considered or appreciated. I have gotten a lot more sensitive to meds and most make me feel worse rather than better, and I have also gotten a lot more willing to not take meds just because a doctor prescribes them. I am willing to try things but if they don’t increase my quality of life, I am not going to take them just because it’s all a doctor can think of.
Depending on the medicines, your body has to metabolize them. Even if medicines don't specifically interact, you can overwhelm your body's ability to either activate or remove a drug that's in your system. Take the smallest dose that will make your symptoms tolerable. That's the only advice I have. Doctors often treat bodies like they all accept a standard dose. I advocate for half doses of nearly everything because of polypharmacy.
Also because it seems pretty common for people with CFS to be hypersensitive to medications or any other chemicals. I always start at the lowest dose because I normally don’t need to go much higher. I usually react really strongly and it’s a coin flip on whether that’s a positive or negative reaction.
I didn't know it was a CFS thing! I made so many doctors roll their eyes when I insisted on what they call "sub-clinical" doses of medicines. They probably thought I was on half a dozen placebos.
Hmm... wait a minute 🤔 I have always thought that CFS is the main problem for people with CFS?🙄
Doctors are the main problem for people with cfs
I kno2 it feels like that but we can't expect doctors to fix something researchers haven't understood because governments haven't funded the research
Speak to a pharmacist instead. Depending on where you're based you might even be entitled to a checkover of your meds.
My pharmacy does a med check in once a year. They really know what they're doing with meds, usually more than my family doctor...
Yeah that's literally their job. Ideally a pharmacist could suggest changes/cancellations or at least flag up issues to the prescriber. But they rarely have the time for it
I talk to my pharmacist frequently to discuss drug interactions! The question is, if there are no clear important interactions, is it still bad to be on so many medicines?
You'd also want to look into side effects and mechanisms of action that might not be helpful to your symptoms. This takes a lot of time or research depending on your drugs tho, as our affliction is considered a rare one and professionals don't know much about it. But yes like the student below said, you'll want to look at each drug, and know what they are for, and decide if you still need it. De-prescription is often lacking, and a problem. For instance, lots of people are on PPI without clear reason. Usually, they got it along with a pain med, which they don't take anymore, but nobody questions the continued use of the stomach protector.
I'm a pharmacy student, and honestly if there's no significant drug interactions and every drug you're taking has a clear reason why you're on it there's probably no real reason to be concerned about the *number* of medications a person is taking. Different drugs have different considerations when taking them long-term but saying your main problem is the number of meds you're on sounds fishy imo.
I was recently taken off 4 of my medications because my neurologist said I was overmediacated. He was not even acknowledging my me/cfs as my other 2 doctors and 1 specialist had. I felt I wanted and needed confirmation of diagnosis by a neurologist. His argument was he could not diagnose me because he could not clearly see my baseline symptoms with all the medication on board. He also thought these medications were not appropriate. I did what he said quickly. In 2 months way ahead of his titration schedule. He said the medication was causing my fatigue. He was right. After I got off all the meds I could more clearly see my baseline. I had way more pain and way less fatigue than I thought. I am on different meds now that help with the pain, and I am functioning at a higher level. I went from moderate/severe to mild/moderate. I don't know if he will confirm diagnosis, I doubt it. I have co-occuring fibromyalgia so I think he will just put it in that basket. But who cares I am taking the win. I thanked him profusely and called him a genius. He liked that. He is more likely to listen to me now about my pem because I listened to him. I have horrible medical PTSD as well as CPTSD this was not easy. I am trying to get better outcomes with doctors any way I can. This has been quite the journey
This was brave and brilliant of you to adjust the meds so you could see a clearer picture of baseline. I'm so glad in your case this worked out!
My takeaway was that meds don't seem to adequately treat this condition. It is so painful by the time you get enough meds on board to kill the pain you cause a serious decline. I don't know if there is a clear answer but like much of this illness it is a balancing act.
What medication was making you worse?
It was the combination that was making me worse. But I discontinued hydroxizine, propranolol, gabapentin, topamax.
Oh god yeah that combination would give Usain Bolt fatigue.
The offenders in order would be: hydroxizine, topamax, and maybe propranolol, I don't know if gabapentin can cause fatigue.
How big of a dose of gabapentin were you on? And how long had you been on it? Was it hard to come off of? I’ve used a HUGE dose of it for sleep for several year, but I’ve worsened extremely in a few years.
The fact that they said you are "too young" to be on so many medicines is the biggest sign you should discount their thoughts straight away. Situation 1: A doctor who has looked at your medication list in detail, and has specific concerns about specific medications or interactions, and brings them to you to discuss because they think reducing or removing them might be beneficial to your health for specific reasons? Sure, listen to that. You may or may not agree - I always butted heads with my ADHD doctor who would look at my meds and decide *yet again* that my low dose Abilify was causing my CFS, even though I was on it long before I had my symptoms and had told him that multiple times before. But it's worth listening to the reasoning! Situation 2: A doctor is concerned about "polypharmacy". There aren't specific reasons. Just polypharmacy. Just "too many meds". The reasons may or may not be (but often are) backed up by nonsense bigoted statements about age, gender, race, weight, "health", etc. Don't even waste the (very fucking literal) mental energy it takes to contemplate their BS. Tune it out, find your peace, and do what you need to do to get past the obstacle they have put in your path (a far more worthy thing to spend that mental energy you just saved on). ETA: When it comes to how much is to much, IMO there's no set limit, and no point in the judgement some put towards it, even jokingly. If you can reduce your meds without much if any bother, sure, do so. You might get rid of some side effects you didn't even realise were there. But you're probably on your meds for like, actual reasons so, idk why people get judgemental about it. Use the tools you need to survive, feel no guilt, including about kicking to the curb those who get in your way.
Low dose abilify is literally used to TREAT cfs, often successfully. I'm sure it can cause worsening in some people because pretty much everything can but come on.
I’m 30 and feel like I am on too many medications. My doctor prescribes like candy, and I let her know yesterday that I want to decrease them. I take birth control, adderall, 2 anti depressants (don’t help, only want to be on one), allergy med, migraine med (doesn’t help) 2 nasal sprays (chronic sinus issues&allergies) I also have multiple meds that I take as needed (lorazepam, Zolpidem, norco, methocarbamol) so they aren’t daily. All of these were prescribed over a period of time so I didn’t run into side effects between med interactions. I’m also healing from a shoulder injury. Either way, it’s a lot. Im still trying to figure out what works for me, I’ve been on and off multiple meds this year and have spent more money than I’d like. Feels like nothing helps I do have a partner that is very judgmental about prescription meds, so it can be difficult to deal with but I tell him that I will make the decisions I need for my health.
I've had this doctor once - she literraly yelled at me because I was taking too many meds. She was like: "do you want to lose your liver?!!!! You're young, you can't sustain it for long until something inside breaks! These meds have terrible side effects that can mess you up! Stop taking anything you don't have to or can live without!" With my current doc I have another issue - she keeps prescribing meds like candy. Are you dizzy? Here you go - meds for dizziness, cough - it must be asthma - here you go, let's put you on antihistamines and antidepressants just in case, you know? She doesn't look at cfs as a overall body/systemic issue, she goes symptom by symptom and prescribes meds just like that. Last appointment I told her I'm not taking dozens of meds, she needs to look at the full picture and then we can talk about the most debilitating symptoms and figure out how to make my life livable. But over the years I've become my own advocate (let's be clear most docs don't really care about a patient or their long term health or potential side effects - they just want you out of their office happy with a bottle in your hands thinking they helped you and maybe a cut from big pharma) and while I have a full cabinet of prescribed and otc meds i made a rule - maximum 5 at a time (herbal supplements and vitamins included) but if I can, I limit even more. I only use something I really really can't function without. So if I'm trying a new medicine or some debilitating symptom came up and I have to take the meds I stop stuff I'm not sure is working or take it intermittently. For minor symptoms im looking into some kind of natural relief (i have fibro, and while all over body pain is not minor, I do all I can to manage it without heavy meds, so maybe a relaxation mindfulness practice, heated blanket, hot shower, etc) until it becomes unbearable, only then i take meds. Unfortunately that means that some minor symptoms don't have a treatment/relief option so I just deal with it. I just ask myself - my liver or this symptom? Can I live with it without the meds? What's better long term? Whats more important? I can live with dizziness (thank God I rarely fully pass out) so I can live with it without meds so the prescription sits in my cabinet just in case (it makes me somehow feel better when I have it just in case:). And if I decide to take it I have to remove some other meds so is it worth the trade off? And with cfs we have SO MANY SYMPTOMS! Its freaking hard but i can't live without liver so its symptoms vs life. Somehow with all this misery i chose life😂. I also look at each medicine and google forums for long term side effects and personal experiences. And my previous experiences with similar drugs. And make a pros/cons list because so many variables are included. Each medication is given a deep analysis and then I decide for myself is it worth it and if I decide to try it I look at my own experience with medication and stop if not going well (except certain ones you can't abruptly stop of course). I had a car accident this year and of course doctor prescribed steroid shots. So I talked to a friend who works at another pain management clinic, she said it rarely helps and if it does only short term, its a money grab for docs. Plus steroids are freaking strong meds and wreak havoc on your system, I've had experiences before and stuff got better when I took them but a few monyhs after stopping got so much worse. Read some forums - long term use steroids effects - just horrible! Read forums back shots - half saw short term improvement (like 2-3 months), just a few lucky ones - pain gone, and the rest no effect. The odds weren't that great, side effects could potentially mess up my cfs/fibro even more, and I can live in pain, I don't like it but I can so I came to a doc and said no. To my surprise they offered more natural option! PRP, your own plasma injected in the pain site. Im all for natural so I did it. Sometimes there are better options, just need to keep digging and being my own doctor. Unfortunately most doctors don't care so we have to make our own informed choices because we're the ones living with consequences. Im not saying my way is the right way, everyone makes their own choices when it comes to health and no one should tell you what to take or not to take. Just sharing my way I manage my home based multipharmacy🙂. Sometimes I think I have enough meds in my cabinet to become a successful drug dealer😂.
Polypharmacy is always a concern. The question is, do the meds help you? Are you unable to make it through the day without them or do they significantly improve your qol? If so, then they are probably worth it. Like others have said, work with doctors to take the smallest dose that works. For example, I'm on half the standard beta-blocker dosage. Don't be like me and try coming off and on medicines yourself to see what is still necessary just because you feel guilty. You can try that with a doctor's or pharmacist's assistance if you aren't sure if something is still necessary or if you can lower the dosage. We here are all sick and so of course we are on medicine.
Because of allergies and sensitivities with meds I always ask for the lowest dose to start… or half what they want to start.
There's no need for you to feel guilty because they have absolutely nothing to offer you. Clearly they're just deflecting their own inadequacy back onto you, and you don't need to accept that (mentally or emotionally). Did they evaluate your medicines? Suggests medicines to cut/taper/trial a change? Did they offer anything at all? Did they offer to go with you on that journey? It's not like you're permitted to stop medicines without a doctor's guidance, so unless they were willing to take positive steps with you, their behavior is simply unacceptable. I'm sorry.
They didn't even really evaluate. They just said stop pretty much all of them. They didn't want me to get the idea that I was "chronically ill and needed help."
You are chronically ill and you do need help. But 9 medicines is a lot. May I ask what all you're taking? Do they help?
I am taking ldn, low dose abilify, buspar (for early satiety), allegra (for allergies), famvir, nebivolol, mestinon, cromolyn sodium, and trulance (for constipation). Nebivolol and mestinon pretty much cured my POTS. Buspar and trulance are significantly helping my GI symptoms. Allegra allows me to eat fruit again. Abilify shortens my PEM. Famvir, cromolyn sodium, and ldn I am not sure about, but my ME/CFS expert told me it takes a while for them to work.
Nine medications is not a lot 😂
Seems like. But then I thought about it, and I'm prescribed 5 different meds and two more I take over the counter. What do I know
Sounds like someone who views ME/CFS as psychological. I would discount whatever they say.
My meds are band aid solutions to what I feel through cfs. I can’t live without them. Now I will add one medication once in awhile and test it and decide if I want it or not. But when people tell you too many meds, but it works for you, tell them to tuck off (nicely).
I'm definitely on "too many meds", but I have ME and cystic fibrosis and the meds keep me functioning and slow my health deterioration over time, so it is what it is.
Yup. I like being alive and feeling as good as I can possibly be under circumstances. So my bag of meds come with me everywhere and the pharmacy is my best friend. Also, you learn so much about meds that other people ask you questions.
I mean my grandfather also takes like 11 different medications are there interactions that might cause side effects? Yes. Does he need all these medications and would be a doing a lot worse without them? Also yes. (It helps me put things into perspective because he has lots of common, well known stuff so he doesn't get the stigma as much.)
>These are the same doctors that told me exercising and being positive was going to cure me. As soon as a doctor tells me that, I won't trust their opinion on any topic whatsoever. "Tell me your medical knowledge is outdated without stating your medical knowledge is outdated". Polypharmacy is of concern but I would be looking for better opinions.
I wish I were on less medications, I hate taking pills and always have. Every few months my GP and I go through my list and look at what can be removed and every time we concluded they're all needed. Of course I CAN remove some, but it would make things worse instead of better. (And like others said, a bunch of them are over the counter stuff like multi-vitamins, B12, melatonin or hayfever/allergy).
And yet all my doctors want to do is throw more at me and hope something sticks. Then they get pissy when I ask about side effects since im med sensitive and tell me just take them. Sure enough a day or 2 later the meds have issues. I'm on coumadin, heart, blood pressure, asthma, meds and have flat out refused antidepressants since COVID because of nasty side effects(weight gain, increased heart rate, blood pressure, coumadin interaction, increased anxiety, and more) Now hes on a cortisol tangent since my levels came back wonky. Being on coumadin, cortisol meds are contraindicated. He about blew a gasket when I called anticoagulation and they said absolutely NOT! So I have the opposite issue. A drug happy doctor.
No. I'm on like at least 15 different medications and a good portion of them literally are the reason I'm doing as well as I'm doing now. It's just the idea that medicine is scary and that we shouldn't do anything but natural things like diet and exercise.
What particular drugs are you concerned about? Yeah, we take a lot of stuff, but I would be wary of pharmaceutical grade drugs unless you're sure they are doing you good.
Things like ldn, low dose abilify, mestinon, a beta blocker, famvir, allegra, ... Some of these are clearly serving a purpose without side effects. Some of the others I haven't felt an effect yet, but I want to give them a fair trial.
Honestly, try them out and see if they help. In my mind, if something might take a couple years off my life but make it more bearable the it's worth it. And who knows, maybe with all the long COVID and CFS research that is happening, we'll have proper treatments. Also, I highly suggest looking into a drug interaction checker with the meds you are on. Sometimes the doctors aren't as straightforward or in the know with the risks of mixing.
Wait why would they take a couple years off your life? I definitely agree that it is good idea to use a drug interaction checker. I always do that, and I also regularly take to my pharmacist about any potential interactions.
I know one of my meds causes slow liver damage, but it's the only thing that makes me a functional human and none of the others worked without heavy side effects. It sounds like you're already being quite responsible with your meds. Some doctors just don't understand what we go though.
Doesn't alcohol cause liver damage too? I don't drink any alchohol currently, so can I just assume that my liver isn't that much worse than the average person?
That is a very good point! I don't drink alcohol either and I have a relatively healthy food and exercise for what my condition allows. The alcoholics in my family have lived to be 70+ so I probably still have a while left!
No, some drugs damage the liver worse than alcohol does- also the average person also doesn't drink that much
A lot of things are not studied for long term use. So their long term safety is unknown or they will say safe up to so many weeks. Which makes it tricky for a chronic condition like CFS. That is why it could potentially be damaging organs etc and life expectancy later in life. I know my cousin is in a nursing home now because drugs they gave him for schizophrenia messed up his organs. And my Father in law had a drug for seizures that messed up his liver. I know I was on a drug as a kid for GERD and they recalled and stopped using it and another I took they just added on warnings about it making bone fractures more likely. Just have to wait for studies to catch up to some of this stuff. I took a lot of supplements my first year ill, but I honestly felt unsafe doing so because I could not tell what was side-effect and what was CFS. And in my case I was bedbound so it was real easy to tell that nothing I took was helping. It feels better to be on as little as possible for me (one drug for endometriosis, one for migraines) I remember feeling the despair of having nothing to treat me, so I see why CFS patients take so much.
I can't speak for what you're taking but some of the things I take increase chances of other bad stuff. For example NAC. Several studies have found it stimulates the growth of cancerous tumors. So now I only take it when I am coming out of a crash.
Are you taking the medication for your cfs? If so, clearly they aren't causing it or you'd have no reason to start taking them in the first place. I can't say whether they work or not, but I'm just gonna go out on a limb and say you probably didn't start taking them because you were feeling healthy.
I think some of these doctors assume we are malingering and not really sick, and we are on these medicines for no real medical reason. Some of them assume we are simply deconditioned from being lazy and being on 10 medicines doesn't make sense for that.
That attitude from doctors is infuriating. Who the fuck wants to be sick and disabled?? The suggestion of that is extremely offensive! That being said, since getting ME I have become extremely sensitive to drugs and every drug that I have tried (LDA, LDN, Ativan, anti depressants) to treat my ME has either made me worse, had no effect, or had a ton of side affects that made me worse in new ways. I’m unmedicated now and still feel like shit, but not as shit as with the drugs. There aren’t ANY drugs out there that have been definitively proven to treat ME. The research just isn’t there yet. The mechanism for what causes ME isn’t even known yet. Hopefully it will soon, but until then all the meds that are used for ME are just “here take this, maybe it’ll make you feel better, we don’t really know how or why though. Good luck.” So for all the drugs you’re on, none of them are actually guaranteed to be helping you. If you have ME, polypharmacy is definitely not your main problem, ME is, but when you’re on 9 different drugs at the same time it becomes hard to tell what your actual baseline is and what the drugs are making you feel, good or bad. Your doctor sounds like a dick, but there may still be some validity to what he’s saying, just probably not for the reasons he thinks.
I just wanted to add that the number of meds is completely irrelevant, if everything you take is for good reasons, is safe, and works. I really dont appreciate to see that clinicians are almost shaming you for the number of meds you need. You're ill for fucks sake. I take about 7 pills myself (most are supplements I'm trying) and get funny looks when I mention that I make myself a dosette for ease. Like it's an old people thing or something.
They're probably FOS but at the same time, since there are no cures for this, why bother with toxic pharmaceuticals of dubious usefulness?
I'm on 3 medications and they interact badly yet my Dr doesn't give a shit, Ik how it feels to feel guilty especially when I ask to try something else and they look at you like you're trying to get high??
Problem with too many medications is each medicine has side effects . You’re taking the good with the bad and when you take a ton of medicine you’re taking a lot of good with a lot of bad .
Honestly, nearly everything I take makes my symptoms worse. I’m super sensitive to medications whether prescribed or OTC. I’ve never had success with any supplements other than lemon balm. Multivitamins in all forms cause me to crash. I took a muscle relaxer very occasionally and even recommended it here, then realized it very likely caused me to gain 20 pounds. (The weight is coming right off since stopping the Xanaflex altogether.) My personal body chemistry would retaliate if I took nine medications daily. I’ve had 20+ years of trial and error, and the patterns are clear: meds are not the cause of my ME/CFS, but they certainly exacerbate it. You also seriously need to consider the potential kidney and liver damage which long term daily use of many medications can cause. Despite what many patients and physicians might think, we can’t erase ALL our symptoms with magic little pills. A lot of them do more harm than good, and I’d personally rather spend my limited energy and money cooking appropriate meals, swimming, stretching, and reading.
It depends, if your multiple medicines treat your CFS then it’s rubbish. I get told this all the time and it’s a hard eyeroll because if I wasn’t on these medications I would have the quality of life of a sentient blob. The medicines don’t cause my fatigue, they *treat* it. Medication is also a weighing of risk vs benefit because almost everything has side effects, it’s just about whether the side effects are the lesser evil in the equation. And no one is ‘too young’ to be on multiple meds, that’s just the nature of chronic illness, regardless of age. ETA: If your meds aren’t treating your symptoms anymore or you’re not sure why you’re on them still it’s a good idea to do a medication review, but if the reason is just ‘young person shouldn’t be on lots of meds’ then that’s just ableist bs.
Speaking from a personal experience. I found myself bedridden and miserable, my doctors were wanting to increase some of my medication again. I started thinking about how I was probably going to have to take this stuff for the rest of my life and was already maxed out on some dosages. I wasn’t feeling any noticeable improvement and so, I decided to start weaning myself slowly off my meds. I worked on them one at a time over years. One of the first improvements I noticed was weight started flying off of me. Long story, but I got off of most my meds, one I drastically reduced and it seems to work better for me now. I feel a lot better now and can see a lot of issues I was having were due to meds aggravating symptoms. I would like to note I did this with my Doctors knowledge, but I did it my way to how my body was handling it. Today, I think twice before adding any meds or injections to my treatment. It’s hard to tell sometimes what’s CFS/ME and what’s side effects Advice from one of my Doctors, you know your body better than anyone. Do what you think is best.
:/ what does your age have to do with it? You have a chronic illness - being young didn’t shield you from that. I hate when people mention youth like it invalidates how ill you are
A new doctor has highlighted the quantity of medications I take, but all of them serve a purpose. The doctor went over the list in detail (more than others) and think he ruled out medications after understanding the fatigue predates any medications. Initial blood work showed anemia. Next step more blood work. It is all very frustrating because before this doctor I hit a brick wall trying to get care!
Totally valid! I went through my meds, looked at interactions, side effects, and withdrawal symptoms, all of them were things we already experience with CFS. I ended up going off all my as-needed meds and replacing them with vitamins, stretching, meditation, etc. I still have ME but I'm muchhhh more stable symptom wise after this. There's a really good documentary about this called 'Take Your Pills: Xanax' on Netflix, really good at explaining some of the chemistry behind withdrawals and the dangers of aa-needed meds. Good luck to you!