I've had some success with: "I understand that there are no treatments for CFS and that's not what I'm asking you for right now. I want to have an accurate diagnosis so that the NIH will have more accurate numbers to base their decisions on about research funding."
Getting them to move on from 'it's purely mental health' can be really tricky. I tried to focus on symptoms that don't match either depression or anxiety, and emphasize that these physical symptoms showed up before you started feeling anxious (if you do) and you think it's reasonable to be upset about suddenly developing debilitating mystery health issues, and it would actually give you a great deal of peace of mind to have them explained even if there isn't a treatment.
Once you get that you can try with to bring up LDN or mestinon by bringing up the idea and having studies about them printed out?
I finally asked my doctor about LDN a couple days ago. He's a good one. He hadn't heard of it and said so. He looked at his tablet then looked at it on my phone for dosage. He said "I'll do it."
Printing it out would have been better!
I imagine it depends on local laws and the individual doctor...? My GP was willing to prescribe LDN and she sees me over telehealth for everything but physicals.
I'd assume anyone running ads for this is a scammer trying to make money off Long Covid patients but I'm not an expert and I'm not the boss of you, do what you want.
It’s one of those online clinics. They offer a bunch of medications. I have used similar companies for skincare and for NAD injections. if I ever see the name of it I’ll look closer. It seemed legit.
AgelessRx is absolutely legit. (No, I have no connection to them other than as a patient/customer.) I'm paying $40 a month for my LDN prescription. They did my medical evaluation then prescribed through a partner pharmacy that mails it out. They also use sucrose as a filler, which is great because there's a different common filler that many have come across elsewhere that has caused them stomach problems. I've had zero side effects.
I totally get the skepticism because I went through the same thing, but you will not regret this. Best of luck to you!
The last time I tried LDN again (years ago) it caused what felt like an explosion in my gut. I got it from the same pharmacy I had gotten it from years prior (Skip’s Pharmacy in Florida). They were the best place to get it for many years. Maybe my memory isn’t serving me and I got it through a different compounding pharmacy. Hmmm. Do you know what the filler was?
Tell her there might not be a cure but symptom management would help a lot. Migraines? Get specific medication for those. Digestive issues? Get meds for that. She could also it you in touch with local community services or schemes that might be of benefit to someone with limited mobility.
Sounds like you need a new, more compassionate and open minded doctor though!
No approved treatment for this specifically doesn't mean you can't treat the symptoms for improved quality of life.
[https://batemanhornecenter.org/wp-content/uploads/filebase/Treatment-Recs-MECFS-Clinician-Coalition-V1-Feb.-2021.pdf](https://batemanhornecenter.org/wp-content/uploads/filebase/Treatment-Recs-MECFS-Clinician-Coalition-V1-Feb.-2021.pdf)
I've had to deal with doctors pushing that my condition is just depression. I eventually tried antidepressants to make a point, they don't make any difference to my mood or symptoms. Now when a different doctor tries to push that angle again, I can explain how many I tried and that they legitimately do not help me. The only exception is for off label uses to help me sleep, for that I don't take a full dose (for example, amitriptyline is prescribed at ~100 mg for depression, I take 10 mg for sleep). I understand not wanting to take prescriptions that aren't needed though, I just had enough of the automatic assumption that it's just my mental health.
If mental health is all she wants to discuss, make it about that. Your mental health suffers greatly due to the physical symptoms you experience, alleviating or improving your condition even a small amount could be huge, is it not worth attempting some of the frequently used treatment?
LDN is definitely a good start. It wasn't helpful for me but it has worked for a lot of people, and from my understanding the side effects are more low impact, so it's a good option to start with.
The pharmacy compounded it for me. It came mixed into a liquid that was flavored and I would measure the dose with a syringe and just swallow it directly. The pharmacy would add raspberry flavor but it was still really bitter and unpleasant, so be prepared for that.
So many of us are forced to figure out our own treatment options. I think you're on the right track. I've been taking LDN for about 6 weeks, and it's def helping. I've had a great experience with AgelessRx, btw. They'll evaluate and prescribe (if you're in the US), so you don't need your PCP to do that much.
Another vote for AgelessRx for those in the US. I was lucky that my doctor prescribed it for me, but then my insurance said I had to pick it up in person every 30 days because "Covid is over now". I fought and filed an appeal to have it continued to be mailed to me, but they still refused, so I have been going through AgelessRx instead for over a year now and it's been so much easier
I wish I could leave. Many of my doctors are in the next largest city which is 2 hours away. Just don’t want to keep driving 2 hours for care, I get home and crash after a 4 hour long car ride.
Since you're stuck with her I'd go for:
- There is no *treatment* but there is a lot of *symptom management* these days and I want to explore that
- I need a formal diagnosis for my physical symptoms, have we ruled out Addisons/lupus/multiple sclerosis/etc
- I have limited energy and I don't want to waste it trying to treat something I don't have (mental illness)
Be really firm about symptom management and try to get started on some common ones like mestinon or low dose amitriptyline or whatever.
My primary care doctor said these exact words to me after diagnosis. So they did bother to diagnose me but said there is nothing they can do. I had already seen a bunch of specialists prior to diagnosis so I knew they weren’t helpful.
I ended up seeing an integrative medicine doctor on the advice of a doctor that I worked with. They focus on day to day function as opposed to treating all of CFS or curing. I’m not sure your current doctor is a good candidate, but if you find a doctor who is more receptive you could ask them to help tackle symptoms or groups of symptoms that would help you in everyday life. Like focus on sleep, then pain, then GI symptoms or whatever makes sense for you. It is a long process with lots of trial and error, but it’s the best we have in CFS. LDN was one of the treatments that ended up benefiting me, but overall it has been a lot of different changes (some meds, some food, some supplements, some lifestyle) that add together to create improvement.
Do men and/or women with children get any more than young or middle aged, single and childless women? Lately, I feel that lack of urgency from my doctors that you describe quite a lot.
I’m lucky in that my doctors are willing to try many things which I suggest. But my frustration is coming from A. Having to manage my own complex disease while having cognitive deficits that feel like early onset Alzheimer’s. And B. The lack of reaction and concern about my inability to earn a living and abysmal quality of life. I sometimes wish that I was a (white, let’s face it) man who told them that he had a family to support.
Even though there are still no “real” treatments, I feel like if my life and family circumstances were different, I would get more urgency and maybe they would be willing to actually learn about the damned disease and not leave it up to me to figure out how to cope and improve.
I sure that the men and mothers will set me straight and tell me that their doctors are equally disinterested. It may actually make me feel a bit better to know that they treat everyone equally as crappy.
This is profound. I've had this creeping feeling I'm being discriminated against on this basis as my 30s feel like they're rapidly passing me by while I'm completely debilitated by ME/CFS and the existing diagnoses and chronic infections that are being horribly neglected by doctors the older I get. I'd already have a family of my own if doctor's GAF and stopped: refusing basic diagnostic tests, defensively throwing their arms in the air when I ask about an abnormality in my results they failed to inform me about, gaslighting/stonewalling, interrupting my long list of symptoms/medical history with dismissive borderline rhetorical questions, fixating on ONE minor thing I mentioned, berating me as some self-diagnosing hypochondriac until I'm in tears when they have my list of diagnoses right in front of their sneering faces, or get so distracted by their dramatic annoyance with me (eyerolls, sighs, clock-checking me & all), and y'all know the rest. Pisses me off to imagine the amount of time and energy they waste doing ALL that. At least they're paid for their time. Bottom line is they'd never treat a man like this.
They'd never treat an able bodied rich person regardless of sex like this. And if I was a mom, I could pull the "but I'm a mother" card, which definitely causes docs to pause and think "oh no, I must dedicate more time to this case so I don't orphan those kids... God forbid her poor husband be forced into becoming a single father!" Yeah, stakes is low on us "spinsters" — except we're not childless because we're out there being working women (holy misogyny), we're childless because we dying. I can't even take care of a myself rn, nevermind a pet, or a partner, or an entire human being. I know I'm being robbed of a life, and it's only been accelerated by COVID taxing the already broken Medical Industrial Complex (or killing off/retiring the good doctors), and me watching my early-30s disappear during a pandemic, from which lockdown never ended for me.
I've even had docs withhold diagnoses and abnormal labs from me that could've changed everything. In the past, I've had doctors work together to deny a diagnosis when the possibility exists that one of their own (a doctor) either willfully neglected my care (usually by not believing me) to the point organ damage/advancing a disease past being treatable, or injured me by not disclosing the risks (or lack of FDA approval status) with Off-Label "cancer" drugs (e.g. Lupron, a hormone blocker that can damage the hypothalamus) and/or supportive chemo drugs (i.e. Neupogen, Neulasta cause leaky capillaries, which cause chronic lower extremity edema).
I really want to put this out there tho: my CFS/ME symptoms began late-2016, and escalated dramatically by mid-2017 — and I became borderline housebound by late-2018, and mostly housebound since late-2019. What happened unbeknownst to me during this exact time period? Black mold growing inside my apt walls, while my slumlord lied and lied and lied about cleaning up the regular non-toxic mold, and covered-up the black mold they found and failed to remediate. Everything escalated during lockdown because it forced me to be around black mold 24/7. I'm still living with it as we speak, while my landlord dangles my habitability relocation as a bargaining chip. Cost of living going insane due to price fixing & price gouging (literal record apt vacancies in LA — there's no demand to backup the current "Fair Market Value" rate) has only trapped me further in this lose-lose situation. The damage to my body will be permanent, assuming I don't have life-ending cancer recurrence atm because of it, because it triggered my immune system into overdrive, along with immunotherapy cancer treatments given in combination with chemo despite the damage this causes to the heart valve (god forbid chemo become irrelevant) & getting COVID in this hell hole with an autoimmune disease — which gave me a near fatal Cytokine Storm April 2023. My doctors during this deadly COVID complication: "I don't know her. Who dis?" All I needed was a regular run of the mill steroid pack to calm my immune system down before I had multiple organ failure. Ever since, my existing thyroid disease has progressed to not responding to medication, my brain fog has been so severe I also can't remember basic words or even what they hell I was saying a second ago, and there's something very scary going on with my sinuses.
I got cancer at 27. I got briefly got better after completing treatment and all my surgeries 1 year later... Then my body started slowly coming apart and nobody believed me. It hurts to even acknowledge my recent birthday making me on yet another year older and no closer to a life. Every year older, I'm degraded by society (and men in the dating pool) as a woman, because my fertility potential is arbitrarily seen as not as good as younger females — and apparently my entire worth is decided by my ability to pop out a little of babies. I just can't with this world rn.
While there is no cure for ME/CFS, there is treatment in managing your symptoms. It's unprofessional for her to brush you aside and refer you to the psychiatrist. The diagnosis is important. There are a multitude of considerations here. Of course, the mental health component is important. It's equally as important that your doctor properly diagnoses you so you can receive proper treatment. That includes a lot of medication options that your psychiatrist won't prescribe.
She's the doctor. She works for you. If she's not willing to provide proper treatment, I'd get another doctor. You should ask her about mestinon and LDN.
LDA (low dose abilify), mestinon, LDN are the three big ones that have some evidence for ME/CFS. I’ve had good luck with LDA and mestinon, planning on trying to add LDN
Edit: all of these have studies you can share, that’s worked well for me but I have understanding doctors
I understand your predicament of needing and wanting support, and struggling to find it. This doctor is uncooperative and most likely you will be better off spending your energy finding someone else, or outsourcing different parts of your treatment to whoever is willing to support you. The Ageless Rx someone mentioned sounds like a good way to get ahold of LDN if you want to try it. I’ve looked at their website too, and it does seem very accessible.
There probably isn’t a doctor who will hand you a treatment plan that is just right for you. Self advocacy and self diagnosis seem to be the best way to manage for most of us. I am so sorry you are going through this. You sound very much like you will be able to figure out what treatments would be right for you and what you are willing to try. The next step is find the source where you can obtain those meds or that guidance. Best of luck to you as you navigate this difficult journey. I really hope you find all the support you need and want! Hugs are coming to you!
I’m having some success with LDN right now, at least I think that’s what’s helping, it’s always so hard to know.
My doctor had explained its pretty low risk for adverse issues, since I was nervous about trying anything with my sensitive body (I had a horrible experience with low dose amitriptyline, though I know it’s helpful for lots of us).
Just know you’d probably have to get it made through a compounding pharmacy. My insurance wouldn’t cover that and it costs me about $50/month.
I would also recommend trying low dose Abilify. It doesn't work for everyone but it did help me cognitively.
I started with 0.5 mg and slowly increased it to 1 mg, where I'm gonna stay.
Find another doctor, please, my love. If your doctor insists that it's not CFS, ask her to write down her **differential diagnosis** during an appointment in your chart next time, make sure she does that come on also ask her to document in your chart and write down that you've repeatedly requested testing from her for CFS and that she has denied it.
It seems like you have a case for malpractice.
You may also add anything to your medical chart with her that you want. I would write a letter to her and fax or get it to her some way that is safe stating that you have symptoms of CFS, include links to studies and diagnostic criteria, that you've begged her for testing, that she has repeatedly refused, and to put this in your medical chart as an adjunct document. I would also send her studies and links to studies about CFS, diagnostic criteria for CFS, symptom lists, testing for CFS, and demand or request that she put them in your medical chart as her patient.
She's probably going back down really ,really quickly. Disabled Twitter taught me this trick.
Get a second opinion. From a specialist who won't gaslight you.
And she can't suddenly kick you out of her practice if she decides to be pissy and go that route. She has to find you another doctor and you have 90 days.
There is no treatment for a broken leg. It's symptom management until the body can heal itself. Like ME.
And a diagnoses is important, because there should be good data about this.
I would consider looking for a new doctor I know it’s hard but sometimes you really cannot change their mind and it’s not your job as a patient.
I would consider seeing an internal medicine specialist. They often times specialize in certain areas and oversee all kinds of cases. I am seeing an internal medicine doctor and they’ve been the most helpful yet.
I am sure you know this but ME is definetly not mental. We can see physical differences and this notion that it is mental comes from two psychiatrists in the 70’s who said an out break of ME was really just hysteria.
Maybe try mentioning that there are tons of conditions with no cure where there are still treatments that can help, including conditions that she probably would consider it medically irresponsible to just not treat at all, despite the lack of a cure. Like arthritis, MS, ankylosing spondylitis, asthma, ulcerative colitis, psoriasis, narcolepsy, myasthenia gravis, herpes, graves disease, epilepsy, crohn's, type 1 diabetes, and more. Say that you know the protocol for diseases without cures is to focus on symptom management and improving quality of life, and share some printouts from reliable sources about how that can be approached for ME/CFS. And then ask, as deferentially as possible, what approach she would like to take for proceeding with your symptom management and improving your quality of life? Try not to ever imply that you know something she doesn't know (you do, but most doctors hate that) or that you know exactly how to proceed (again, she has to feel like she's deciding how to proceed in order for her to do anything, because of her ego), and try to avoid even talking to her like a peer, but rather make it more a plea of confusion. Like you just are confused because, as you both know, incurable conditions are approached this way, and you brought information just to make sure you two can talk about the options listed, so you just need her guidance on how to proceed with symptom management uwu. Lol. Play to her ego and bypass her excuses.
I'm probably within an hour or so west of you. Can you do telehealth through URMC or the like? Not to say that would def provide a better outcome, but at least you'd have access to a whole bunch of new practitioners.
My primary is with Rochester regional, that’s where I’m driving out for care now. Sometimes they do video visits but surprisingly often they want to see me in person. My neurologist and cardiologist is still local because the ones in system have wait times right now. I’ve been on the wait list for a POTS specialist for like, 8 months.
Gotcha. I can't actually say I've had a much better experience with my PCP at URMC, tbh, even though she's usually great. We went through a similar process with her looking at the official diagnostic criteria before fully getting on board with my diagnosis. I have been sensing, though, that most of my various providers are waking up to the realities of ME/CFS due to all the recently publicized data around long Covid. If only these giant hospital systems would coordinate better regarding the sharing of emerging medical knowledge instead of waiting for each individual doctor to hopefully, maybe catch up and get on the same page!
I’ve pretty much given up on doctors except for symptom relief, and that’s just when something extreme is going on, like my current 9 days of diarrhea. In this case it could have had a cause, but no. I get ldn online and am having some success with nicotine patches. Both suggestions from online groups, not doctors. And absurd amounts of supplements. Pacing. Rest.
I printed out an article, years ago, on cfs vs depression. I gave that to a lot of doctors and my disability company. I don’t know if I have it anymore but you might find it online.
I would look into the book “safe uses of cortisol.”
Some doctors believe that some forms of CFS are caused by extremely low cortisol levels.
I have taken low dose cortisol and it alleviated a lot of chronic pain and achiness and fatigue, and I eventually weaned off.
Do not listen to anyone who says “there’s no cure.” How can there be “no cure” for a disorder that has so little known about it?
You need a new doctor STAT. A DO perhaps.
Your doctor is shit, find a new one, I went through more than 10 shit doctors before I starting looking for ones that had a good track record on this stuff, suffice to say, I found a good one eventually, I have passed out many times over the last 15 years (at one point daily), initially it was mitochondrial issues, today its almost all adrenal insufficiency or blood sugar levels.
I'm experiencing a long bout of post-viral fatigue and my SO has been living with CFS/ME for ~10 years, so we're both dealing with similar symptoms atm. It's a bonding experience no one wanted.
My GP (PCP since you're in the US) recommended that I see an Exercise Physiologist who specialises in CFS for help with symptom management, and oh my goodness I'm so glad she did! The Exercise Physiologist I saw was incredible - he's fully up on all the current CFS and Long Covid research, figured out that in part I'm dealing with Orthostatic Intolerance and prescribed compression clothing (25-30 mmHg pressure) which has been absolutely amazing, prescribed other supportive strategies which are also helping, and soon we'll be starting "Movement Re-introduction" (**NOT** graded exercise therapy) with the aim of achieveing an Asymptomatic Movement Baseline with a long-term goal to *gradually* progress this baseline. My SO is going to be getting compression clothing next week based on how much improvement it gives me (and his POTS).
Is there an Exercise Physiologist like this near you? Symptom management is possible!
I googled it and there are some private options. I have already failed out of PT twice. I can give it a shot, but I can not stress how red the area is. People here don’t believe in long covid, hell, they don’t even believe in covid at all.
Oof :( that just adds an extra layer of complexity that is so not needed. Hopefully you'd be able to do some pre-screening of the practitioner before you invest the energy and money in going to see them - website, phone conversation etc. The website of the place I'm going makes it very clear that the clinic operates in a supportive way for CFS folk (they offer home visits, low sensory group sessions and other such things). And hopefully the health professionals in your area are more informed than the general public? 🤞🤞🤞
Consult with a functional md even if via phone. One that is familiar with cfs, Lyme and or mitochondrial function.
There is much hope and many new protocols that help.
There is a root cause to flush out.🙏
I've had some success with: "I understand that there are no treatments for CFS and that's not what I'm asking you for right now. I want to have an accurate diagnosis so that the NIH will have more accurate numbers to base their decisions on about research funding." Getting them to move on from 'it's purely mental health' can be really tricky. I tried to focus on symptoms that don't match either depression or anxiety, and emphasize that these physical symptoms showed up before you started feeling anxious (if you do) and you think it's reasonable to be upset about suddenly developing debilitating mystery health issues, and it would actually give you a great deal of peace of mind to have them explained even if there isn't a treatment. Once you get that you can try with to bring up LDN or mestinon by bringing up the idea and having studies about them printed out?
I finally asked my doctor about LDN a couple days ago. He's a good one. He hadn't heard of it and said so. He looked at his tablet then looked at it on my phone for dosage. He said "I'll do it." Printing it out would have been better!
Can you do an online doctor for LDN?
AgelessRx.com
I imagine it depends on local laws and the individual doctor...? My GP was willing to prescribe LDN and she sees me over telehealth for everything but physicals.
I see ads for online providers for LDN. I am I the US.
I'd assume anyone running ads for this is a scammer trying to make money off Long Covid patients but I'm not an expert and I'm not the boss of you, do what you want.
It’s one of those online clinics. They offer a bunch of medications. I have used similar companies for skincare and for NAD injections. if I ever see the name of it I’ll look closer. It seemed legit.
AgelessRx is absolutely legit. (No, I have no connection to them other than as a patient/customer.) I'm paying $40 a month for my LDN prescription. They did my medical evaluation then prescribed through a partner pharmacy that mails it out. They also use sucrose as a filler, which is great because there's a different common filler that many have come across elsewhere that has caused them stomach problems. I've had zero side effects. I totally get the skepticism because I went through the same thing, but you will not regret this. Best of luck to you!
The last time I tried LDN again (years ago) it caused what felt like an explosion in my gut. I got it from the same pharmacy I had gotten it from years prior (Skip’s Pharmacy in Florida). They were the best place to get it for many years. Maybe my memory isn’t serving me and I got it through a different compounding pharmacy. Hmmm. Do you know what the filler was?
Others have commented about it at different times. I'm sorry that I don't remember! It's something I hadn't heard of before.
How long have u been severe
It got worse really slowly, but since around 2019? Why?
Tell her there might not be a cure but symptom management would help a lot. Migraines? Get specific medication for those. Digestive issues? Get meds for that. She could also it you in touch with local community services or schemes that might be of benefit to someone with limited mobility. Sounds like you need a new, more compassionate and open minded doctor though!
No approved treatment for this specifically doesn't mean you can't treat the symptoms for improved quality of life. [https://batemanhornecenter.org/wp-content/uploads/filebase/Treatment-Recs-MECFS-Clinician-Coalition-V1-Feb.-2021.pdf](https://batemanhornecenter.org/wp-content/uploads/filebase/Treatment-Recs-MECFS-Clinician-Coalition-V1-Feb.-2021.pdf)
This. Yeah you can’t cure me. But I shouldn’t have to lay here with pain, migraines, bowl issues ETC.
It's upsetting that more providers won't treat the treatable.....or at least try......
💯
Thank you! I printed this off for my appointment today and offered it to my neurologist and she seemed happy for the information
Oh that's great! I hope you are able to at least find some symptom improvement/relief!
I've had to deal with doctors pushing that my condition is just depression. I eventually tried antidepressants to make a point, they don't make any difference to my mood or symptoms. Now when a different doctor tries to push that angle again, I can explain how many I tried and that they legitimately do not help me. The only exception is for off label uses to help me sleep, for that I don't take a full dose (for example, amitriptyline is prescribed at ~100 mg for depression, I take 10 mg for sleep). I understand not wanting to take prescriptions that aren't needed though, I just had enough of the automatic assumption that it's just my mental health. If mental health is all she wants to discuss, make it about that. Your mental health suffers greatly due to the physical symptoms you experience, alleviating or improving your condition even a small amount could be huge, is it not worth attempting some of the frequently used treatment? LDN is definitely a good start. It wasn't helpful for me but it has worked for a lot of people, and from my understanding the side effects are more low impact, so it's a good option to start with.
Did you take liquid (dissolved) LDN? If so do you merely swallow it or take it sublingually?
The pharmacy compounded it for me. It came mixed into a liquid that was flavored and I would measure the dose with a syringe and just swallow it directly. The pharmacy would add raspberry flavor but it was still really bitter and unpleasant, so be prepared for that.
The pharmacy compounds it into liquid to get a low enough dose. Mine didn't flavour it and told me to mix it with juice. It still tasted awful.
So many of us are forced to figure out our own treatment options. I think you're on the right track. I've been taking LDN for about 6 weeks, and it's def helping. I've had a great experience with AgelessRx, btw. They'll evaluate and prescribe (if you're in the US), so you don't need your PCP to do that much.
I had a good experience with AgelessRx as well.
Another vote for AgelessRx for those in the US. I was lucky that my doctor prescribed it for me, but then my insurance said I had to pick it up in person every 30 days because "Covid is over now". I fought and filed an appeal to have it continued to be mailed to me, but they still refused, so I have been going through AgelessRx instead for over a year now and it's been so much easier
If my doctor did what this doctor has done they would no longer be my doctor.
I wish I could leave. Many of my doctors are in the next largest city which is 2 hours away. Just don’t want to keep driving 2 hours for care, I get home and crash after a 4 hour long car ride.
Since you're stuck with her I'd go for: - There is no *treatment* but there is a lot of *symptom management* these days and I want to explore that - I need a formal diagnosis for my physical symptoms, have we ruled out Addisons/lupus/multiple sclerosis/etc - I have limited energy and I don't want to waste it trying to treat something I don't have (mental illness) Be really firm about symptom management and try to get started on some common ones like mestinon or low dose amitriptyline or whatever.
My primary care doctor said these exact words to me after diagnosis. So they did bother to diagnose me but said there is nothing they can do. I had already seen a bunch of specialists prior to diagnosis so I knew they weren’t helpful. I ended up seeing an integrative medicine doctor on the advice of a doctor that I worked with. They focus on day to day function as opposed to treating all of CFS or curing. I’m not sure your current doctor is a good candidate, but if you find a doctor who is more receptive you could ask them to help tackle symptoms or groups of symptoms that would help you in everyday life. Like focus on sleep, then pain, then GI symptoms or whatever makes sense for you. It is a long process with lots of trial and error, but it’s the best we have in CFS. LDN was one of the treatments that ended up benefiting me, but overall it has been a lot of different changes (some meds, some food, some supplements, some lifestyle) that add together to create improvement.
Do men and/or women with children get any more than young or middle aged, single and childless women? Lately, I feel that lack of urgency from my doctors that you describe quite a lot. I’m lucky in that my doctors are willing to try many things which I suggest. But my frustration is coming from A. Having to manage my own complex disease while having cognitive deficits that feel like early onset Alzheimer’s. And B. The lack of reaction and concern about my inability to earn a living and abysmal quality of life. I sometimes wish that I was a (white, let’s face it) man who told them that he had a family to support. Even though there are still no “real” treatments, I feel like if my life and family circumstances were different, I would get more urgency and maybe they would be willing to actually learn about the damned disease and not leave it up to me to figure out how to cope and improve. I sure that the men and mothers will set me straight and tell me that their doctors are equally disinterested. It may actually make me feel a bit better to know that they treat everyone equally as crappy.
This is profound. I've had this creeping feeling I'm being discriminated against on this basis as my 30s feel like they're rapidly passing me by while I'm completely debilitated by ME/CFS and the existing diagnoses and chronic infections that are being horribly neglected by doctors the older I get. I'd already have a family of my own if doctor's GAF and stopped: refusing basic diagnostic tests, defensively throwing their arms in the air when I ask about an abnormality in my results they failed to inform me about, gaslighting/stonewalling, interrupting my long list of symptoms/medical history with dismissive borderline rhetorical questions, fixating on ONE minor thing I mentioned, berating me as some self-diagnosing hypochondriac until I'm in tears when they have my list of diagnoses right in front of their sneering faces, or get so distracted by their dramatic annoyance with me (eyerolls, sighs, clock-checking me & all), and y'all know the rest. Pisses me off to imagine the amount of time and energy they waste doing ALL that. At least they're paid for their time. Bottom line is they'd never treat a man like this. They'd never treat an able bodied rich person regardless of sex like this. And if I was a mom, I could pull the "but I'm a mother" card, which definitely causes docs to pause and think "oh no, I must dedicate more time to this case so I don't orphan those kids... God forbid her poor husband be forced into becoming a single father!" Yeah, stakes is low on us "spinsters" — except we're not childless because we're out there being working women (holy misogyny), we're childless because we dying. I can't even take care of a myself rn, nevermind a pet, or a partner, or an entire human being. I know I'm being robbed of a life, and it's only been accelerated by COVID taxing the already broken Medical Industrial Complex (or killing off/retiring the good doctors), and me watching my early-30s disappear during a pandemic, from which lockdown never ended for me. I've even had docs withhold diagnoses and abnormal labs from me that could've changed everything. In the past, I've had doctors work together to deny a diagnosis when the possibility exists that one of their own (a doctor) either willfully neglected my care (usually by not believing me) to the point organ damage/advancing a disease past being treatable, or injured me by not disclosing the risks (or lack of FDA approval status) with Off-Label "cancer" drugs (e.g. Lupron, a hormone blocker that can damage the hypothalamus) and/or supportive chemo drugs (i.e. Neupogen, Neulasta cause leaky capillaries, which cause chronic lower extremity edema). I really want to put this out there tho: my CFS/ME symptoms began late-2016, and escalated dramatically by mid-2017 — and I became borderline housebound by late-2018, and mostly housebound since late-2019. What happened unbeknownst to me during this exact time period? Black mold growing inside my apt walls, while my slumlord lied and lied and lied about cleaning up the regular non-toxic mold, and covered-up the black mold they found and failed to remediate. Everything escalated during lockdown because it forced me to be around black mold 24/7. I'm still living with it as we speak, while my landlord dangles my habitability relocation as a bargaining chip. Cost of living going insane due to price fixing & price gouging (literal record apt vacancies in LA — there's no demand to backup the current "Fair Market Value" rate) has only trapped me further in this lose-lose situation. The damage to my body will be permanent, assuming I don't have life-ending cancer recurrence atm because of it, because it triggered my immune system into overdrive, along with immunotherapy cancer treatments given in combination with chemo despite the damage this causes to the heart valve (god forbid chemo become irrelevant) & getting COVID in this hell hole with an autoimmune disease — which gave me a near fatal Cytokine Storm April 2023. My doctors during this deadly COVID complication: "I don't know her. Who dis?" All I needed was a regular run of the mill steroid pack to calm my immune system down before I had multiple organ failure. Ever since, my existing thyroid disease has progressed to not responding to medication, my brain fog has been so severe I also can't remember basic words or even what they hell I was saying a second ago, and there's something very scary going on with my sinuses. I got cancer at 27. I got briefly got better after completing treatment and all my surgeries 1 year later... Then my body started slowly coming apart and nobody believed me. It hurts to even acknowledge my recent birthday making me on yet another year older and no closer to a life. Every year older, I'm degraded by society (and men in the dating pool) as a woman, because my fertility potential is arbitrarily seen as not as good as younger females — and apparently my entire worth is decided by my ability to pop out a little of babies. I just can't with this world rn.
While there is no cure for ME/CFS, there is treatment in managing your symptoms. It's unprofessional for her to brush you aside and refer you to the psychiatrist. The diagnosis is important. There are a multitude of considerations here. Of course, the mental health component is important. It's equally as important that your doctor properly diagnoses you so you can receive proper treatment. That includes a lot of medication options that your psychiatrist won't prescribe. She's the doctor. She works for you. If she's not willing to provide proper treatment, I'd get another doctor. You should ask her about mestinon and LDN.
LDA (low dose abilify), mestinon, LDN are the three big ones that have some evidence for ME/CFS. I’ve had good luck with LDA and mestinon, planning on trying to add LDN Edit: all of these have studies you can share, that’s worked well for me but I have understanding doctors
Get another doctor. She's not worth the energy or effort.
Same, started out with mono 35 years ago. I hope you can find help soon.
I understand your predicament of needing and wanting support, and struggling to find it. This doctor is uncooperative and most likely you will be better off spending your energy finding someone else, or outsourcing different parts of your treatment to whoever is willing to support you. The Ageless Rx someone mentioned sounds like a good way to get ahold of LDN if you want to try it. I’ve looked at their website too, and it does seem very accessible. There probably isn’t a doctor who will hand you a treatment plan that is just right for you. Self advocacy and self diagnosis seem to be the best way to manage for most of us. I am so sorry you are going through this. You sound very much like you will be able to figure out what treatments would be right for you and what you are willing to try. The next step is find the source where you can obtain those meds or that guidance. Best of luck to you as you navigate this difficult journey. I really hope you find all the support you need and want! Hugs are coming to you!
There is currently no cure but there is treatment, both medications and strategies to help manage symptoms
I’m having some success with LDN right now, at least I think that’s what’s helping, it’s always so hard to know. My doctor had explained its pretty low risk for adverse issues, since I was nervous about trying anything with my sensitive body (I had a horrible experience with low dose amitriptyline, though I know it’s helpful for lots of us). Just know you’d probably have to get it made through a compounding pharmacy. My insurance wouldn’t cover that and it costs me about $50/month.
You can get it through AgelessRx for $40. 😉
I’ve never heard of that, I’ll have to look into it. Thanks!
I would also recommend trying low dose Abilify. It doesn't work for everyone but it did help me cognitively. I started with 0.5 mg and slowly increased it to 1 mg, where I'm gonna stay.
Find another doctor, please, my love. If your doctor insists that it's not CFS, ask her to write down her **differential diagnosis** during an appointment in your chart next time, make sure she does that come on also ask her to document in your chart and write down that you've repeatedly requested testing from her for CFS and that she has denied it. It seems like you have a case for malpractice. You may also add anything to your medical chart with her that you want. I would write a letter to her and fax or get it to her some way that is safe stating that you have symptoms of CFS, include links to studies and diagnostic criteria, that you've begged her for testing, that she has repeatedly refused, and to put this in your medical chart as an adjunct document. I would also send her studies and links to studies about CFS, diagnostic criteria for CFS, symptom lists, testing for CFS, and demand or request that she put them in your medical chart as her patient. She's probably going back down really ,really quickly. Disabled Twitter taught me this trick. Get a second opinion. From a specialist who won't gaslight you. And she can't suddenly kick you out of her practice if she decides to be pissy and go that route. She has to find you another doctor and you have 90 days.
There is no treatment for a broken leg. It's symptom management until the body can heal itself. Like ME. And a diagnoses is important, because there should be good data about this.
I would consider looking for a new doctor I know it’s hard but sometimes you really cannot change their mind and it’s not your job as a patient. I would consider seeing an internal medicine specialist. They often times specialize in certain areas and oversee all kinds of cases. I am seeing an internal medicine doctor and they’ve been the most helpful yet. I am sure you know this but ME is definetly not mental. We can see physical differences and this notion that it is mental comes from two psychiatrists in the 70’s who said an out break of ME was really just hysteria.
Maybe try mentioning that there are tons of conditions with no cure where there are still treatments that can help, including conditions that she probably would consider it medically irresponsible to just not treat at all, despite the lack of a cure. Like arthritis, MS, ankylosing spondylitis, asthma, ulcerative colitis, psoriasis, narcolepsy, myasthenia gravis, herpes, graves disease, epilepsy, crohn's, type 1 diabetes, and more. Say that you know the protocol for diseases without cures is to focus on symptom management and improving quality of life, and share some printouts from reliable sources about how that can be approached for ME/CFS. And then ask, as deferentially as possible, what approach she would like to take for proceeding with your symptom management and improving your quality of life? Try not to ever imply that you know something she doesn't know (you do, but most doctors hate that) or that you know exactly how to proceed (again, she has to feel like she's deciding how to proceed in order for her to do anything, because of her ego), and try to avoid even talking to her like a peer, but rather make it more a plea of confusion. Like you just are confused because, as you both know, incurable conditions are approached this way, and you brought information just to make sure you two can talk about the options listed, so you just need her guidance on how to proceed with symptom management uwu. Lol. Play to her ego and bypass her excuses.
I got into 3 accidents in a year pretty much falling asleep at the wheel like this is dangerous and they sneed to research it more
Plus no one taking it seriously just think we are lazy over it.
Hey, I totally understand your pain and frustration. I am in New York as well. Shoot me a DM and I can try to help you find someone.
Where in NYS??
Finger lakes region, I don’t really want to drive to Watertown or above and my insurance won’t cover anything below Westchester
Ohhh I see you’re more south than me
I'm probably within an hour or so west of you. Can you do telehealth through URMC or the like? Not to say that would def provide a better outcome, but at least you'd have access to a whole bunch of new practitioners.
My primary is with Rochester regional, that’s where I’m driving out for care now. Sometimes they do video visits but surprisingly often they want to see me in person. My neurologist and cardiologist is still local because the ones in system have wait times right now. I’ve been on the wait list for a POTS specialist for like, 8 months.
Gotcha. I can't actually say I've had a much better experience with my PCP at URMC, tbh, even though she's usually great. We went through a similar process with her looking at the official diagnostic criteria before fully getting on board with my diagnosis. I have been sensing, though, that most of my various providers are waking up to the realities of ME/CFS due to all the recently publicized data around long Covid. If only these giant hospital systems would coordinate better regarding the sharing of emerging medical knowledge instead of waiting for each individual doctor to hopefully, maybe catch up and get on the same page!
I’ve pretty much given up on doctors except for symptom relief, and that’s just when something extreme is going on, like my current 9 days of diarrhea. In this case it could have had a cause, but no. I get ldn online and am having some success with nicotine patches. Both suggestions from online groups, not doctors. And absurd amounts of supplements. Pacing. Rest.
I printed out an article, years ago, on cfs vs depression. I gave that to a lot of doctors and my disability company. I don’t know if I have it anymore but you might find it online.
I would look into the book “safe uses of cortisol.” Some doctors believe that some forms of CFS are caused by extremely low cortisol levels. I have taken low dose cortisol and it alleviated a lot of chronic pain and achiness and fatigue, and I eventually weaned off. Do not listen to anyone who says “there’s no cure.” How can there be “no cure” for a disorder that has so little known about it? You need a new doctor STAT. A DO perhaps.
Your doctor is shit, find a new one, I went through more than 10 shit doctors before I starting looking for ones that had a good track record on this stuff, suffice to say, I found a good one eventually, I have passed out many times over the last 15 years (at one point daily), initially it was mitochondrial issues, today its almost all adrenal insufficiency or blood sugar levels.
there’s a handout to give them in the pinned post
I'm experiencing a long bout of post-viral fatigue and my SO has been living with CFS/ME for ~10 years, so we're both dealing with similar symptoms atm. It's a bonding experience no one wanted. My GP (PCP since you're in the US) recommended that I see an Exercise Physiologist who specialises in CFS for help with symptom management, and oh my goodness I'm so glad she did! The Exercise Physiologist I saw was incredible - he's fully up on all the current CFS and Long Covid research, figured out that in part I'm dealing with Orthostatic Intolerance and prescribed compression clothing (25-30 mmHg pressure) which has been absolutely amazing, prescribed other supportive strategies which are also helping, and soon we'll be starting "Movement Re-introduction" (**NOT** graded exercise therapy) with the aim of achieveing an Asymptomatic Movement Baseline with a long-term goal to *gradually* progress this baseline. My SO is going to be getting compression clothing next week based on how much improvement it gives me (and his POTS). Is there an Exercise Physiologist like this near you? Symptom management is possible!
I googled it and there are some private options. I have already failed out of PT twice. I can give it a shot, but I can not stress how red the area is. People here don’t believe in long covid, hell, they don’t even believe in covid at all.
Oof :( that just adds an extra layer of complexity that is so not needed. Hopefully you'd be able to do some pre-screening of the practitioner before you invest the energy and money in going to see them - website, phone conversation etc. The website of the place I'm going makes it very clear that the clinic operates in a supportive way for CFS folk (they offer home visits, low sensory group sessions and other such things). And hopefully the health professionals in your area are more informed than the general public? 🤞🤞🤞
Consult with a functional md even if via phone. One that is familiar with cfs, Lyme and or mitochondrial function. There is much hope and many new protocols that help. There is a root cause to flush out.🙏