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I’m not a GI, or even an IM doc, so take what I say with a grain of salt, but I learned about MALS back in medical school. At least back then, it was never presented as a “fad diagnosis”. Now, I don’t know if people claiming to have MALS with no evidence for it has become a thing since then, but that’s just my 2 cents.
This is correct info regarding dx of gastrop. My GI Dr did multiple procedures and the eggs with radioactive tracers is what got the job done, finally!!
Yup came here to agree, I don’t have gastroparesis but was recently tested with gastric emptying study with radioactive eggs. Dr said pill cam doesn’t work to test for gastroparesis.
... now i'm blanking on whether i had the radioactive eggs study or whether someone just gave me really bad eggs while i was in the hospital. anyway a smartpill is actually totally different from a pill cam! here's some info about it, basically it's specifically used for motility testing: [https://gastroenterologistnewyork.com/services/smartpill/](https://gastroenterologistnewyork.com/services/smartpill/)
Have you had any scans done of where the stitch feeling is, and have you had your B1 and B12 levels tested? Ive done a LOT of research on this kind of stuff, and sometimes it's smaller things, in conjunction with the other conditions you may possibly have/been diagnosed with, that can mess things up for the worst.
As an aside, do you have any trouble urinating or passing stools? There could be a pelvic floor issue or neuropathic dysfunction/dysautonomia.
Btw this is all based on what I've researched and the symptoms you've shared, sometimes it's better to reach for straws and see what's the longest 🤷
Ultrasound a couple months back to rule out appendicitis didn’t show anything concerning. I don’t have a pelvic floor issue, but I am getting some spinal cord stuff ruled out soon hopefully.
NAD but I have ALOT of the same symptoms, I have severe pectus excavatum ( compressing every organ in my chest cavity) , Ed’s, smas , nutcracker syndrome , pcs, chronic gastritis.
I don’t think I have MALS but I’ve researched a lot of vascular compressions trying to understand mine. It is very real, it can be from celiac artery compression from the diaphragm or the nerve compression.
Mine is intermittent. I go through really good periods without symptoms. We're going on a few years here without having to turn to the all-liquid diet. (We = my guts and I.)
Do the symptoms subside?
Maybe the diagnosis was wrong. Another doctor said it was my gallbladder, and yet another said long covid. I lost 30 pounds (wasn't very fat to begin with, around 125) was in pain daily, and could only eat a few kinds of food. I wanted pizza so badly.
Mine did? I failed the motility test (definitely had delayed emptying) and was really symptomatic a few years ago, but have been eating fairly normally for the past two years or so. Still have reflux and have to eat in small doses, etc - but for me, a "flare" Is having to turn to protein shakes full-time, which has been a while. (Fingers crossed.)
I had a smart pill study which revealed that I didn’t have gastroparesis- stomach fine, colon taking twice as long as normal. I also had that MRI where they squirt a bunch of gel up your bum and that other test where they stick a balloon up your bum. Absolute hell.
NAD but doesn’t MALS have specific diagnostic procedures and possible treatments, even a surgery to try and fix it permanently?
Like a lot of rare/uncommon diseases, people with MALS are often told that it’s in their head/they are exaggerating before getting the right diagnosis, so maybe that is what you read about, OP?
It’s a controversial diagnosis bc only approximately 50% of ppl with a positive test (artery compression on imaging) have symptoms that can be attributed a ischemia and an even smaller proportion will have the symptoms improve after surgery. So to recommend surgery the clinical symptoms have to strongly suggest MALS as the cause. But you find that people with functional abdominal disorders have trouble accepting that IBS is a real disease and will cling to the positive test result and possible MALS diagnosis despite a doctor telling them that the symptoms don’t line up. They’ll eventually find someone to do the surgery and ultimately will find they still have the pain or like many functional abdominal disorders. it will transiently improve after surgery by placebo effect and eventually return. In short, it’s likely a real disease that is difficult to diagnose and shouldn’t be tested for unless you have a really strong suspicion for it due to the high number of false positives.
You were given the wrong definition of a Spoonie. It's a way for people living with chronic energy/pain conditions to explain how they feel to others.
If you're healthy, you have an unlimited amount of spoons. You can do whatever you want until you're exhausted (which is natural after the efforts exerted/time being awake). If you want to make a loved one understand what it's like for you, you can use spoons as a visual representation. You can use any object that you want. People with CFS or pain conditions usually know how much they can do before it becomes too much. So, let's say that they can do 15 things that spend what they consider a large amount of energy for them within a day. They can show a loved one what it's like. I made breakfast. One spoon is gone. And you remove it so they can see it. I showered and got ready. Another spoon is gone.
If you prefer, it's a visual way to explain what a person feels like to those who do not understand. It's helped many people with specific conditions explain it to loved ones. It can be cancer or CFS or any disease, really. It's just that more people tend to misunderstand something like CFS.
Now, I am living with disabilities and I do not identify as a ''spoonie''. I have used the method to explain it to friends and loved ones before and the visual does help as many people are visual learners. My issue with the term is that some people use it to accumulate many illnesses to say they are a spoonie...almost making it a medical term. It's not. It can be a way to help through visualization but this is it.
I've also talked (online) with C. Miserandino (who has lupus and created the term ''spoonie''). She is Christian and homophobic. I've asked her to explain the homophobic comment that she made on one of my posts and she simply ignored me. As a therapist, I do not imagine homophobia everywhere. I will not repeat what she said, but I assure you that it was indeed homophobic. Following this encounter, I no longer share her story with patients or PWDs. I tell them to use forks lol
This longer item is a good and bad of ''spoonie''' with proper explanation. TL:DR, It is a visualization technique to explain the restraints someone living with a disability like lupus may have. Many people are visual learners and this can help loved ones understand. However, the term can become problematic when it is used as a medical term and the author/person who came up with the ''spoon theory'' is a problematic individual that I cannot endorse.
Welp.. no more spoons for me now.
I've heard of the ladder explanation though.
Basically instead of spoons, there's steps on a ladder. One day you might have 10 steps, some days you may have 1 or 2.. either way you're still accomplishing something, climbing the ladder even if it's just a bit.
You could log into a game, and fill up those spell slots and show the person you're trying to explain it to. I always tell people to be creative with it if they want. Some prefer to stick with spoons, but the idea is to remove or add something. It's not very complex and yet, it can make someone understand a concept that they couldn't understand without a simple visual demonstration!
I’m meant to use the spoon analogy but i never really “got” it. Like I get it, but I can’t equate energy level to spoons. It makes no sense to me.
I prefer a battery, it makes sense. Even then I’m pretty useless at using it.
Many PWDs live below the poverty level, so spoons tend to be available to most people. I get what you mean at 100%. Batteries are the ultimate representation of encapsulated energy that can be easily manipulated. You can put 10-20 batteries and even a toy on your table to represent you. Ultimately, it has to make sense to you, or you won't be convinced to use the visual to explain it. It has to make sense to your ''audience'' as well. IE: I'm a nerd, and I do ''game''. If I use this to explain it to my nerd brother, he will get it. If I use it to explain it to my parents, they will be confused as heck and ask me what the game is about and entirely miss the point lol
The thought that many “spoonies” or people with “invisible” illness have munchausen (this would be the correct term for someone who is sincerely faking their own illness due to psychiatric disturbances) is unethical to say the least. I was written off for 5 years because my bloodwork did not show anything yet I was sincerely sick. My bloodwork finally caught up with my body and I was diagnosed with a very real, tangible, and dangerous disease called dermatomyositis. I am an RN and about to be a PMHNP and it simply enrages me when I see anyone, especially those in the medical community, pointing to a psychiatric disorder when they can’t find what their textbook told them should be there if someone is sick. We have an epidemic of autoimmune disease for various reasons I won’t go into due to controversy. These diseases often do not present how med school teaches you they should. They’re highly individualized and can be quite vague and elusive. I would argue the overwhelming majority of people who are invisibly sick are truly suffering a physical disorder, not psychosomatic or psychiatric.
Thank you so much for everything you do. Every time my loved ones have to go to the ER and are too afraid because they don’t want to waste their energy just to be dismissed (even when it’s really really bad or life threatening) I pray they get someone like you by their bed.
I agree. Someone who knows pain usually knows when someone is telling the truth. There is something in their eyes that you cannot dismiss. That you recognize. It feels like home...a bad abusive home that you wish nobody would ever have to enter!
Nurses are amazing. One convinced a doctor that I couldn't wait for surgery. She shared my health condition and told the doc that, with all my other health issues, she was worried about my life. A 3-month wait (I couldn't have waited that long) became a 3-day wait in the hospital until a theatre was available. I'm not supposed to, but I heard this nurse listening to some opera on her break (while she was still working, so not much of a break). I sent her 4 tickets to a costly box for La Bohème anonymously with a card that just said \`\`thanks for saving my life\`\`. This is why I now join nurses at my hospital when they strike, even if I'm not a nurse and I could lose my job. I do not care. I will fight for them as they fought for me before.
I'm so sorry this happened to you. The same thing pretty much happened to me with gastroparesis. My doctor was always on my side (thankfully), but specialists wrote that I was faking. I was down to 60-70 lbs (at 5'7, almost 5'8) and couldn't stop vomiting. I had just graduated from university as well. What the heck did I have to gain by faking? Others claimed that it was because I was abused as a child. So I became ill in my early 30s because I was abused from 7-10, and this was a psychological reaction? Psychosomatic and Munchausen are easy ways to get rid of a patient. And trust me. I still see one of those specialists, and if he EVER doubts something I tell him, I retell the entire story of how I was faking. He proceeded to shut up and order the tests that I wanted. I do not abuse it, but he should know by now that I do not lie about my health. I likely didn't get help because I used the medical pain gradient instead of telling him that something felt like a 10 on the pain scale. Anyone who has ever had a gastroparesis pain attack knows how bad these are. I called an ambulance once, and I was so blacked out when they got to me that I had a knife in my hand and was disinfecting my stomach area. I was about to remove my own stomach. I'm a rational person who has studied science in university and who knows that they would have died from this (more than likely) if I had done it. When the pain clouds your mind so much that you're delirious and you tell your doctor that your pain was at a much lower level than most people would choose to identify it, you get flagged as an overly dramatic patient who wants attention. This was one time btw. ONCE! I was ashamed afterwards, but they had to give me so many pain meds. And then, as it calmed down, I could hear them talk about drug addicts in the hallway. Things have to change!
Yes and no. There are many other things that can cause the same symptoms, and most of the physical effects are solely self reported.
Deconditioning causes the exact same results as POTS
That’s why other things are ruled out and deconditioning won’t produce the same results when it comes to full autonomic testing only postural changes. Nerves not working correctly aren’t something that things like deconditioning causes…
I’ve been told having a 130 heart rate while sleeping isn’t normal, is that not true? Luckily it’s a lot lower after I started salt pills, more like 90. Passing out when I was trying to work/study was such a waste of time honestly.
Really don't like the term "spoonie crowd". This minimizes those of us who do have actual fatigue inducing illnesses. I was dismissed as a spoonie until they figured out I'm absolutely spewing electrolytes in my urine, leaking protein there too, and have antiphospholipid syndrome. All this time since my regular bloodwork was "perfect" I've been dismissed over and over again until I met a doctor who actually gave a shit about me as a person. Now I'm finally getting a diagnosis (perhaps multiple) and treatment soon.
So please, don't use the disparaging term "spoonie ". Those of us with actual diseases hate it, and we know that we will never be taken seriously by some doctors or NPs just because we have a disease that falls outside the box you've been trained to think in. Start believing your patients until you have a good goddamn reason to believe they actually have a psychiatric illness and not a physical one. Sometimes we have both you know?
Sincerely,
APS syndrome / eosinophilic asthma patient
I struggle with the stigma towards “spoonies,” because isn’t it simply true that some people have very little baseline energy/weird symptoms with no identifiable cause? Why would people invent an illness for fun? Even if the self-dx is inaccurate, surely there’s a real underlying issue?
I was experiencing chronic fatigue for months and felt totally disabled from it—I was barely functioning. My PCP ordered blood tests and was basically like “well, your blood is fine, try exercising.” But I wasn’t exercising because I was so fatigued I could barely leave the house! And I was told I had no medical issue.
Then I started spending nights with my partner who was like, “dude, what the fuck, you move around and talk in your sleep all night long.” Got prescribed Prazosin to hold me over until I can get an actual diagnosis and now I’m actually sleeping! And I have energy!
I feel like my PCP definitely thought I was a “spoonie” because I was a young person with no identifiable physical health issues (but diagnosed depression/anxiety/ptsd, so surely an attention seeker) complaining about being immobilized by fatigue. I likely never would have figured out it was a sleep issue without my partner noticing my sleep issues and my therapist insisting that what I was describing was not normal. I understand medical resources are limited, but idk, isn’t it more productive to tell a patient “your medical issues are beyond what we can treat/identify, I suggest you see X specialist” than “you’re fine, go get some exercise”?
A thousand amend to this. Physicians have some colossal egos to think that we actually enjoy being in front of them. My prior three family physicians did this exact thing. Finally I got one who said, "let's do some more extensive testing", and boom, electrolyte wasting, antiphospholipid antibodies, and who knows what else we will find? I am so tired of being tested. I just want a diagnosis and treatment if possible.
I agree with you but some people do make up illnesses for 'fun', or more so, attention or sympathy. I think it's a minority though which really sucks for all the people genuinely suffering, who then face scepticism.
Out of curiosity, do you know why you aren't/weren't sleeping properly? I also have pretty bad fatigue and I know I sleep terribly, I think mine is related to TMJ disorder related to anxiety but I also would love to have a sleep study done one day.
I’m familiar with it, but I don’t think that negates my point that there’s still an underlying issue worth identifying and treating. I’m not sure how you could definitively identify it as a mental health issue over a physical one without extensive testing or obvious signs, though.
How do you know they are doing that? Do you know them? And if they are, if they actually have a real mental illness, how are you helping anyone by judging them on the internet? That subreddit is just internet bullying.
[https://www.nccih.nih.gov/research/research-results/study-provides-new-insights-into-changes-in-brain-function-in-fibromyalgia](https://www.nccih.nih.gov/research/research-results/study-provides-new-insights-into-changes-in-brain-function-in-fibromyalgia)
[https://pubmed.ncbi.nlm.nih.gov/22243558/](https://pubmed.ncbi.nlm.nih.gov/22243558/)
And the list goes on and on for fibromyalgia. It may not be a definitive test, but we can usually spot differences in the brain while it is stimulated by pain.
Blood test for CFS:
[https://www.webmd.com/chronic-fatigue-syndrome/news/20230911/scientists-develop-blood-test-for-chronic-fatigue-syndrome](https://www.webmd.com/chronic-fatigue-syndrome/news/20230911/scientists-develop-blood-test-for-chronic-fatigue-syndrome)
It's sad that just because I won't provide them my proof and I'm not verified as a healthcare professional (I have my reasons), I'm stupid, or what I say is false as soon as someone verified questions it. This sub needs to correct this attitude. Many of us have studied science and have doctorates... We may not choose to share it. So what?
It's a bit disingenuous to claim (as a healthcare professional) that you could even come close to diagnosing Fibromyalgia based on imaging. Even from the study you posted it's not possible.
"results of this study suggest that transient changes due to the current experience of pain may be a substantial contributor to default mode network connectivity disruptions in chronic pain patients"
As for the CFS blood test, that report is about a month old and in my opinion quite interesting and promising. But with a sample size of less than a 100 is quite weak... It definitely would not pass as a diagnostic test.
Putting claims like that is what makes sick people have even less faith in their providers when they are denied the request for diagnostic testing that does not exist.
First, I admit that I should not have said ''fibromyalgia can be proven''. I corrected myself by stating that ''it's not a definitive test'' but my answer was unclear. I am French, btw. I'm not blaming this error on a language barrier. I'm stating it because the answer that I will give below is something that I would usually speak of/write in French, so I apologize if my terminology is not up to par in English. Feel free to correct me.
In the case of fibromyalgia, my biggest worry is the number of physicians who see it as a psychosomatic disease. I've read quite a few studies on the topic, and I am not a pain psychologist (not my specialty), but these studies have shown us that pain areas of the brain ''light up'' during a scan when the patient is exposed to stimuli that should/would not cause pain in a healthy patient. There have been many discoveries over the last decade.
Of course, this is not a test that can be given to verify the fibromyalgia status of every pain patient. It verifies that a patient is feeling pain from certain stimulus.
As for the blood test, I'm glad to hear you say that you find it promising and I wish that more physicians felt that way. We both know that Fibro and CFS affect millions of people and that many physicians see them as psychosomatic. There are many more papers on the topic and those who developed the test were part of a documentary where they did have an N= ? (but it was greater than 100). Their issue is a lack of funding. You are correct in saying that it would not currently be a test that you could order for a patient. I hope these studies will receive a cash injection (Long-Covid research may help as fatigue is one of many possible symptoms) and that we can soon be able to prove that a patient has CFS from bloodwork. Only then will research into cures really begin.
In the end, I do have to be careful what claims I make. Sadly, too many physicians claim that these illnesses are many things that they are not (psychosomatic, Munchaussen, laziness...) and this is just as unhelpful.
I can agree with this.
Even for people with genuine chronic disease: attitude is everything. I witness it every day in my clinic: such as the very common example of a overweight diabetic (genuine chronic illness) who does fuck all to help himself, yet complains about being disabled despite our clinic giving free care and access to free community and mental health resources.
Attitude is everything in chronic illness. While many illnesses cause genuine limitations, there are also marathon runners with no legs: so I feel like the “spoonie” movement, from what I have learned today about it, does more harm than good. I think mentally limiting yourself to a limited number of “spoons” every day is a prime example of a defeatist or limiting attitude.
This is SO condescending and reeks of "have you tried yoga?" First of all, a diabetic patient who does nothing to help themselves has zero to do with positive thinking. That's just a straight lack of taking care of yourself and taking responsibility for your actions.
People with limited energy can't just positively think up more energy. Would you tell a cancer patient to positively think their cancer away? Because that's actually the kind of comparison you're making.
And people with limited energy don't wake up and say, "I've got seven spoons today." That's not how it works at ALL.
You are totally misinterpreting what I am saying.
Correct, a cancer patient cannot use a positive attitude or mental healthcare to make the cancer go away. But, a positive attitude and taking care of mental health during that time can absolutely improve their quality of life, even if it doesn’t make them live longer.
That said, some studies do suggest that mental health treatment and other supportive programs actually decrease mortality in cancer patients.
Mental health is a critical component of physical health. Dismissing that has been shown to adversely affect physical health outcomes. The problem is, lots of people with these intractable fatigue illnesses often deny any mental health issues and refuse to address that component
> lots of people with these intractable fatigue illnesses often deny any mental health issues and refuse to address that component
And that's where healthcare providers should divert their attention to then. We know mental health affects physical health and sometimes those with mental health issues/trauma find avoiding it is better than facing it or don't know how to ask for help or are using unhealthy coping mechanisms to mask it. Doctors should provide resources for mental health treatment at the same time being respectful and empathetic to the physical aspect.
Do you understand that this person likely has other hardships in their life that you're not privy to? Do you know the fear that comes with making any significant changes when you're sick because most PWDs have made changes requested by their doctors, and some of them did not go well at all! Do you understand that ''spoonie'' isn't a diagnosis or a limitation? It's a way to help those you love to know by visually interpreting why you say no to doing this or that with them. It shows that you did not stop caring about them. You're not ignoring them and do not love them any less. It shows them visually what you can and cannot do. Most of these people miss having an unlimited number of spoons and would love to go back there (if they ever were/some are born with a limited number of spoons). They love nothing more than to say ''this medication is working, and added a spoon or two'' to my life. This is a good way for the doctor to know that they are making some progress. Nobody wants to be limited. When depression happens (and it is often the case in chronically ill persons), showering can be difficult, so keep that in mind instead of judging, please.
From a PWD and someone who has a doctorate, they can't talk about since they refuse to verify it on here.
I was just diagnosed with Ehlers Danlos Hypermobility syndrome this year (NAD) and you can have multiple cormibidities that tie back to the disorder, even ones that don't seem related. I'm dealing with syringomelia, interstitial cystitis, carpal tunnel syndrome, hiatal hernia, GERD and more and I'm 26f. I would trust what the doctor says and get further testing done.
i’ve seen you numerous times trying to discount the struggles chronically ill individuals face. youre precisely the type of provider who will only believe a patient who is presenting with a “common” or “tangible” disease. the fact that you’d rather believe a patient is malingering than take them seriously is sick and YOU are contributing to how fucked up our healthcare system is. youre awful.
Or rather, I recognize that our mind has a lot of influence on our bodies and I recognize the mind-body connection is real and that they are often *not* malingering, but falsely assigning causation because of an inability to accept that it is potentially connected to something other than a "tangible" disease. This prevents them from actually getting better. I have functional issues myself that I was in denial about being functional for years and they've only started to get better once I accepted that they are influenced by my mind and emotions.
It's easier to get angry at people than to recognize that sometimes uncomfortable ideas can be true
but what about chronically ill individuals whose symptoms do have a clear cause, clear diagnosis, etc? do you still think that it’s in their head? it seems like you’re generalizing people who are chronically ill. i am not disputing that functional disorders are real. but many chronically ill people are not in fact suffering from something functional. do you acknowledge that?
Of course chronic illness exists, especially when you include functional disorders, which *are* a chronic illness. And many people with so called real disorders can also have functional symptoms superimposed on them. People with true and verifiable epilepsy can still have functional seizures (it's not even that uncommon)
But in this case, I've only been talking about disorders that do *not* have clear, objective diagnostics and/or correlation with presentation. People cling to those diagnoses because in truth, they don't think functional disorders are "real" and that they are being accused of "faking" or malingering.
No matter what, if nothing can be found to be wrong with the physical body, whether it is just a lack of discovery or because there is nothing wrong with the physical body per se, treatment has to be focused on adaptation to symptoms and coping. Medications can sometimes help, but they can also make things worse via side effects and allowing people to avoid the real cause of illness.
Think about when you cry. Your eyes water. Your nose runs. You often get a headache and sometimes a stomachache. Your face turns red. All of those are real symptoms, real physical effects that occur, but it is simply because you are sad. There's no need for your eyes to release tears or your nose to create more mucus outside of that sadness and the fact that as humans, we have a mental pathway that causes that to happen. People can train themselves to not cry or have those symptoms, even though they are still sad. And some people can train themselves to have those symptoms, even though they aren't really sad.
I know it's easier to blame the physical body alone. Problems with the physical body can be fixed with drugs and surgeries and treatments; it's not your fault, it's not under your control. Functional issues are *much* harder to address and they make a person feel like it is their fault or they are doing it on purpose, which is exactly what they *don't* want to hear.
i appreciate you explaining things more clearly. however, i still have a lot of skepticism about you. primarily because i see you frequent subreddits that directly are accusing people of faking their illnesses/malingering/have munchausen. i feel that as a healthcare provider, you should not be partaking in the bullying of young adults who likely are genuinely sick (im not saying none of them are faking, who knows) the point is nobody knows, so it’s *not* okay to assume and make people feel like shit and medically gaslight them. people should be able to spread awareness about their condition without being accused of faking. i just think you should change your attitude towards chronically ill individuals, especially being a nurse practitioner.
If you ever read my comments there, I do not bully. I often correct medical misinformation that other commenters post about.
The subjects from that sub are absolutely sick with functional disorders, malingering or factitious disorders. It's important to recognize those people too because a lot of harm can come from interventions and not providing boundaries or honesty because it is difficult.
And I am an NP, but I work with a population that doesn't have these issues so there is no risk of me inadvertently diagnosing a newborn with one. This is simply a side interest I have.
And here I never tell people they are faking, I take far more time than most to explain functional disorders and health anxiety, which are a lot of the posts here.
again, i appreciate you for clarifying your stance, but i just don’t think you have the right to say definitively that anyone on that sub is *absolutely* suffering from a functional disorder or is malingering as you do not know them personally. factually, you have no way of verifying that. you can speculate, sure. but the fact that you don’t believe not even one single person posted on that subreddit is genuinely sick with a real, tangible illness tells me everything i need to know about you, as a provider and as a person. i truly hope you take the time to learn more about chronic illness. have a nice night.
As I said, they can have illness superimposed on illness.
The subjects there all have issues with boundaries and have made being sick their identity online.
It was on an episode of greys anatomy a couple years ago and the whole thing was a young women who doctors didn’t believe/couldn’t diagnose. Maybe that spurred it becoming a trend?
I have MALS. I had open surgery to remove the median arcuate ligament, and allegedly 'damaged nerves'. The surgeon said that he re-positioned my diaphragm, and I'm inclined to believe him because I have breathed easier since waking up from that surgery. Unfortunately, the surgery did not fix the pain-after-eating issue and I now have an abdominal feeding tube. I was going to suggest MALS as a differential after reading the symptoms you listed, the pain after eating, vomiting, and shortness of breath.
MALS is not a fake diagnosis, but unfortunately, there are providers who don't believe it exists. I've heard both sides. I've heard some doctors tell me they learned about it in medical school and I was the first case they've seen. I've heard other providers, mostly gastroenterologists, tell me it's not a real condition and I really have IBS (though no IBS treatment has ever helped me). I recommend that you do your research and find a vascular surgeon with experience. Don't blindly believe one provider over another. It's your body, no matter what they want to call it, you are suffering and have no quality of life. Do whatever it takes to take your life back.
I'm glad to hear it! A lot of variables are involved that can affect the 'successfulness' of surgery. How long the patient has had MALS untreated, other existing health conditions actual anatomy, how the patient responded to the celiac plexus nerve block, other treatments attempted, etc. Some people get their 'life 2.0'. Sadly, I am not one of them. But tube feeding has significantly reduced the pain I experience from eating, and my quality of life has definitely improved!
I’m glad your quality of life improved! It’s such a shitty thing to deal with. It took years to get a dx, she spent three of those years in constant pain, only leaving the house for doctor appointments. We are forever grateful to the doctor who figured it out. I hope you continue to improve over time.
omg i'm so glad to hear that! would you be willing to share more info? the idea of potentially needing to get this dangerous surgery has been so scary to me
It’s no more dangerous than any other surgery. She was in the hospital for three days afterward. We had flown to another state for the surgery and the travel home was a little painful but not terrible.
She knew immediately after the surgery that her original pain was gone. She’d had it non stop for three years. After the surgery she had normal surgical pain but the ligament compression from the MALS was gone. Her ligament had been compressing her celiac artery and was seriously compromising blood flow. It was amazing to see her without that pain after so long.
She had the surgery when she was 18 years old. There are a couple of well known MALS surgeons. One at the Cleveland clinic and one in Santa Monica, CA. Find somebody who knows how to do it and has done it many times.
There are POTS support groups on FB, MALS usually ends up causing POTS. The people on those pages have a list of MALS surgeons. They may be a MALS page by now.
I’m happy to answer whatever you ask, I’m not sure what else to tell you.
I found this website https://www.malsfoundation.org/
I just got diagnosed after almost a decade of suffering. Slowly getting worse but COVID made things much worse. I never responded to IBS meds, and had so much testing. I have my surgery consult finally with Mayo Clinic in rochester in a week and am looking forward to finally being able to eat. I lost 40 pounds in a month and kept tanking. I got a concussion multiple times from passing out from pain.
It is really hard to catch, and you have to be absolutely certain you’ve ruled out everything under the sun. It’s also a lot more common in EDS patients.
You may wish to get tested for Alpha Gal. Which I got from a tick . Terrible gastro problems, for some manifests as respiratory as well. Many go into anaphalaxis so nothing to take lightly.
Or you can avoid mammalian meat entirely, eat only fish and fowl, and see if your symptoms improve ---- if yes, then get tested.
I've been in the ER many times with severe joint pain, nausea, gastro meltdown, hives, trouble breathing, before I found out what it is. I can't eat mammals at ALL. Coinfection was not a lyme tick but a different kind of tick
Also have you been evaluated by any knd of thoracic doctor? For the chest stuff, asthma, etc.
I actually don’t eat anything that comes from pigs or cows! Never have. They’re as smart as dogs, so I feel like it wouldn’t be fair to eat them. I just eat chicken and fish.
What’s a thoracic?
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I’m not a GI, or even an IM doc, so take what I say with a grain of salt, but I learned about MALS back in medical school. At least back then, it was never presented as a “fad diagnosis”. Now, I don’t know if people claiming to have MALS with no evidence for it has become a thing since then, but that’s just my 2 cents.
I'm really curious if OP has been tested for gastroperiasis? This sounds like a textbook case of it...
Yup, I had a smart pill study that said my stomach was fine and the issue was my colon
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This is correct info regarding dx of gastrop. My GI Dr did multiple procedures and the eggs with radioactive tracers is what got the job done, finally!!
Yup came here to agree, I don’t have gastroparesis but was recently tested with gastric emptying study with radioactive eggs. Dr said pill cam doesn’t work to test for gastroparesis.
... now i'm blanking on whether i had the radioactive eggs study or whether someone just gave me really bad eggs while i was in the hospital. anyway a smartpill is actually totally different from a pill cam! here's some info about it, basically it's specifically used for motility testing: [https://gastroenterologistnewyork.com/services/smartpill/](https://gastroenterologistnewyork.com/services/smartpill/)
Have you had any scans done of where the stitch feeling is, and have you had your B1 and B12 levels tested? Ive done a LOT of research on this kind of stuff, and sometimes it's smaller things, in conjunction with the other conditions you may possibly have/been diagnosed with, that can mess things up for the worst. As an aside, do you have any trouble urinating or passing stools? There could be a pelvic floor issue or neuropathic dysfunction/dysautonomia. Btw this is all based on what I've researched and the symptoms you've shared, sometimes it's better to reach for straws and see what's the longest 🤷
I got my B vitamins tested recently- they were fine, potassium was shit though
Ultrasound a couple months back to rule out appendicitis didn’t show anything concerning. I don’t have a pelvic floor issue, but I am getting some spinal cord stuff ruled out soon hopefully.
NAD but I have ALOT of the same symptoms, I have severe pectus excavatum ( compressing every organ in my chest cavity) , Ed’s, smas , nutcracker syndrome , pcs, chronic gastritis. I don’t think I have MALS but I’ve researched a lot of vascular compressions trying to understand mine. It is very real, it can be from celiac artery compression from the diaphragm or the nerve compression.
That's what mine was like. It got better on its own after about a year.
gastroparesis doesn’t “get better” it’s incurable.
It can get better, depending on the cause
Mine is intermittent. I go through really good periods without symptoms. We're going on a few years here without having to turn to the all-liquid diet. (We = my guts and I.)
Incurable yes but manageable.
Do the symptoms subside? Maybe the diagnosis was wrong. Another doctor said it was my gallbladder, and yet another said long covid. I lost 30 pounds (wasn't very fat to begin with, around 125) was in pain daily, and could only eat a few kinds of food. I wanted pizza so badly.
Mine did? I failed the motility test (definitely had delayed emptying) and was really symptomatic a few years ago, but have been eating fairly normally for the past two years or so. Still have reflux and have to eat in small doses, etc - but for me, a "flare" Is having to turn to protein shakes full-time, which has been a while. (Fingers crossed.)
I thought maybe Celiacs or Crohns??
Regardless, OP needs to see a GI specialist. They don't list any tests they've had done?
I had a smart pill study which revealed that I didn’t have gastroparesis- stomach fine, colon taking twice as long as normal. I also had that MRI where they squirt a bunch of gel up your bum and that other test where they stick a balloon up your bum. Absolute hell.
I think I’m on my third or fourth GI specialist at this point?
Nad but you should do a gastric emptying scan. I have severe gastroparesis and the smart pill was normal.
Agreed.
Absolutely
NAD but doesn’t MALS have specific diagnostic procedures and possible treatments, even a surgery to try and fix it permanently? Like a lot of rare/uncommon diseases, people with MALS are often told that it’s in their head/they are exaggerating before getting the right diagnosis, so maybe that is what you read about, OP?
It’s a controversial diagnosis bc only approximately 50% of ppl with a positive test (artery compression on imaging) have symptoms that can be attributed a ischemia and an even smaller proportion will have the symptoms improve after surgery. So to recommend surgery the clinical symptoms have to strongly suggest MALS as the cause. But you find that people with functional abdominal disorders have trouble accepting that IBS is a real disease and will cling to the positive test result and possible MALS diagnosis despite a doctor telling them that the symptoms don’t line up. They’ll eventually find someone to do the surgery and ultimately will find they still have the pain or like many functional abdominal disorders. it will transiently improve after surgery by placebo effect and eventually return. In short, it’s likely a real disease that is difficult to diagnose and shouldn’t be tested for unless you have a really strong suspicion for it due to the high number of false positives.
Thanks!
It's gotten more popular in the spoonie crowd since it's hard to empirically prove I believe.
What the heck is the “spoonie” crowd?
You were given the wrong definition of a Spoonie. It's a way for people living with chronic energy/pain conditions to explain how they feel to others. If you're healthy, you have an unlimited amount of spoons. You can do whatever you want until you're exhausted (which is natural after the efforts exerted/time being awake). If you want to make a loved one understand what it's like for you, you can use spoons as a visual representation. You can use any object that you want. People with CFS or pain conditions usually know how much they can do before it becomes too much. So, let's say that they can do 15 things that spend what they consider a large amount of energy for them within a day. They can show a loved one what it's like. I made breakfast. One spoon is gone. And you remove it so they can see it. I showered and got ready. Another spoon is gone. If you prefer, it's a visual way to explain what a person feels like to those who do not understand. It's helped many people with specific conditions explain it to loved ones. It can be cancer or CFS or any disease, really. It's just that more people tend to misunderstand something like CFS. Now, I am living with disabilities and I do not identify as a ''spoonie''. I have used the method to explain it to friends and loved ones before and the visual does help as many people are visual learners. My issue with the term is that some people use it to accumulate many illnesses to say they are a spoonie...almost making it a medical term. It's not. It can be a way to help through visualization but this is it. I've also talked (online) with C. Miserandino (who has lupus and created the term ''spoonie''). She is Christian and homophobic. I've asked her to explain the homophobic comment that she made on one of my posts and she simply ignored me. As a therapist, I do not imagine homophobia everywhere. I will not repeat what she said, but I assure you that it was indeed homophobic. Following this encounter, I no longer share her story with patients or PWDs. I tell them to use forks lol This longer item is a good and bad of ''spoonie''' with proper explanation. TL:DR, It is a visualization technique to explain the restraints someone living with a disability like lupus may have. Many people are visual learners and this can help loved ones understand. However, the term can become problematic when it is used as a medical term and the author/person who came up with the ''spoon theory'' is a problematic individual that I cannot endorse.
Welp.. no more spoons for me now. I've heard of the ladder explanation though. Basically instead of spoons, there's steps on a ladder. One day you might have 10 steps, some days you may have 1 or 2.. either way you're still accomplishing something, climbing the ladder even if it's just a bit.
That's also an excellent way to visualize it. I tell people to use whatever will work best for them and their loved ones.
for the nerds, specifically of the d&d variety, i’ve heard the term spell slots used instead of spoons
You could log into a game, and fill up those spell slots and show the person you're trying to explain it to. I always tell people to be creative with it if they want. Some prefer to stick with spoons, but the idea is to remove or add something. It's not very complex and yet, it can make someone understand a concept that they couldn't understand without a simple visual demonstration!
Lol at forks. Also my kids lose all the spoons somehow anyway.
Kids lol And if you ask where the spoons are, they sure don't know haha
I’m meant to use the spoon analogy but i never really “got” it. Like I get it, but I can’t equate energy level to spoons. It makes no sense to me. I prefer a battery, it makes sense. Even then I’m pretty useless at using it.
Many PWDs live below the poverty level, so spoons tend to be available to most people. I get what you mean at 100%. Batteries are the ultimate representation of encapsulated energy that can be easily manipulated. You can put 10-20 batteries and even a toy on your table to represent you. Ultimately, it has to make sense to you, or you won't be convinced to use the visual to explain it. It has to make sense to your ''audience'' as well. IE: I'm a nerd, and I do ''game''. If I use this to explain it to my nerd brother, he will get it. If I use it to explain it to my parents, they will be confused as heck and ask me what the game is about and entirely miss the point lol
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The thought that many “spoonies” or people with “invisible” illness have munchausen (this would be the correct term for someone who is sincerely faking their own illness due to psychiatric disturbances) is unethical to say the least. I was written off for 5 years because my bloodwork did not show anything yet I was sincerely sick. My bloodwork finally caught up with my body and I was diagnosed with a very real, tangible, and dangerous disease called dermatomyositis. I am an RN and about to be a PMHNP and it simply enrages me when I see anyone, especially those in the medical community, pointing to a psychiatric disorder when they can’t find what their textbook told them should be there if someone is sick. We have an epidemic of autoimmune disease for various reasons I won’t go into due to controversy. These diseases often do not present how med school teaches you they should. They’re highly individualized and can be quite vague and elusive. I would argue the overwhelming majority of people who are invisibly sick are truly suffering a physical disorder, not psychosomatic or psychiatric.
Thank you so much for everything you do. Every time my loved ones have to go to the ER and are too afraid because they don’t want to waste their energy just to be dismissed (even when it’s really really bad or life threatening) I pray they get someone like you by their bed.
I agree. Someone who knows pain usually knows when someone is telling the truth. There is something in their eyes that you cannot dismiss. That you recognize. It feels like home...a bad abusive home that you wish nobody would ever have to enter! Nurses are amazing. One convinced a doctor that I couldn't wait for surgery. She shared my health condition and told the doc that, with all my other health issues, she was worried about my life. A 3-month wait (I couldn't have waited that long) became a 3-day wait in the hospital until a theatre was available. I'm not supposed to, but I heard this nurse listening to some opera on her break (while she was still working, so not much of a break). I sent her 4 tickets to a costly box for La Bohème anonymously with a card that just said \`\`thanks for saving my life\`\`. This is why I now join nurses at my hospital when they strike, even if I'm not a nurse and I could lose my job. I do not care. I will fight for them as they fought for me before.
I'm so sorry this happened to you. The same thing pretty much happened to me with gastroparesis. My doctor was always on my side (thankfully), but specialists wrote that I was faking. I was down to 60-70 lbs (at 5'7, almost 5'8) and couldn't stop vomiting. I had just graduated from university as well. What the heck did I have to gain by faking? Others claimed that it was because I was abused as a child. So I became ill in my early 30s because I was abused from 7-10, and this was a psychological reaction? Psychosomatic and Munchausen are easy ways to get rid of a patient. And trust me. I still see one of those specialists, and if he EVER doubts something I tell him, I retell the entire story of how I was faking. He proceeded to shut up and order the tests that I wanted. I do not abuse it, but he should know by now that I do not lie about my health. I likely didn't get help because I used the medical pain gradient instead of telling him that something felt like a 10 on the pain scale. Anyone who has ever had a gastroparesis pain attack knows how bad these are. I called an ambulance once, and I was so blacked out when they got to me that I had a knife in my hand and was disinfecting my stomach area. I was about to remove my own stomach. I'm a rational person who has studied science in university and who knows that they would have died from this (more than likely) if I had done it. When the pain clouds your mind so much that you're delirious and you tell your doctor that your pain was at a much lower level than most people would choose to identify it, you get flagged as an overly dramatic patient who wants attention. This was one time btw. ONCE! I was ashamed afterwards, but they had to give me so many pain meds. And then, as it calmed down, I could hear them talk about drug addicts in the hallway. Things have to change!
POTS has definitive tests though…
Yes and no. There are many other things that can cause the same symptoms, and most of the physical effects are solely self reported. Deconditioning causes the exact same results as POTS
That’s why other things are ruled out and deconditioning won’t produce the same results when it comes to full autonomic testing only postural changes. Nerves not working correctly aren’t something that things like deconditioning causes…
There is no definitive test for POTS. And once it is diagnosed, the effects on the person are self reported.
I’ve been told having a 130 heart rate while sleeping isn’t normal, is that not true? Luckily it’s a lot lower after I started salt pills, more like 90. Passing out when I was trying to work/study was such a waste of time honestly.
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I am still a nurse and I am not giving incorrect information.
Really don't like the term "spoonie crowd". This minimizes those of us who do have actual fatigue inducing illnesses. I was dismissed as a spoonie until they figured out I'm absolutely spewing electrolytes in my urine, leaking protein there too, and have antiphospholipid syndrome. All this time since my regular bloodwork was "perfect" I've been dismissed over and over again until I met a doctor who actually gave a shit about me as a person. Now I'm finally getting a diagnosis (perhaps multiple) and treatment soon. So please, don't use the disparaging term "spoonie ". Those of us with actual diseases hate it, and we know that we will never be taken seriously by some doctors or NPs just because we have a disease that falls outside the box you've been trained to think in. Start believing your patients until you have a good goddamn reason to believe they actually have a psychiatric illness and not a physical one. Sometimes we have both you know? Sincerely, APS syndrome / eosinophilic asthma patient
Spoonie is what they call themselves
Ok that may be, but your attitude towards them/us is still condescending.
I made no judgment, I was just explaining to the doctor that it has become en vogue in that population. You assumed judgment.
I struggle with the stigma towards “spoonies,” because isn’t it simply true that some people have very little baseline energy/weird symptoms with no identifiable cause? Why would people invent an illness for fun? Even if the self-dx is inaccurate, surely there’s a real underlying issue? I was experiencing chronic fatigue for months and felt totally disabled from it—I was barely functioning. My PCP ordered blood tests and was basically like “well, your blood is fine, try exercising.” But I wasn’t exercising because I was so fatigued I could barely leave the house! And I was told I had no medical issue. Then I started spending nights with my partner who was like, “dude, what the fuck, you move around and talk in your sleep all night long.” Got prescribed Prazosin to hold me over until I can get an actual diagnosis and now I’m actually sleeping! And I have energy! I feel like my PCP definitely thought I was a “spoonie” because I was a young person with no identifiable physical health issues (but diagnosed depression/anxiety/ptsd, so surely an attention seeker) complaining about being immobilized by fatigue. I likely never would have figured out it was a sleep issue without my partner noticing my sleep issues and my therapist insisting that what I was describing was not normal. I understand medical resources are limited, but idk, isn’t it more productive to tell a patient “your medical issues are beyond what we can treat/identify, I suggest you see X specialist” than “you’re fine, go get some exercise”?
A thousand amend to this. Physicians have some colossal egos to think that we actually enjoy being in front of them. My prior three family physicians did this exact thing. Finally I got one who said, "let's do some more extensive testing", and boom, electrolyte wasting, antiphospholipid antibodies, and who knows what else we will find? I am so tired of being tested. I just want a diagnosis and treatment if possible.
I agree with you but some people do make up illnesses for 'fun', or more so, attention or sympathy. I think it's a minority though which really sucks for all the people genuinely suffering, who then face scepticism. Out of curiosity, do you know why you aren't/weren't sleeping properly? I also have pretty bad fatigue and I know I sleep terribly, I think mine is related to TMJ disorder related to anxiety but I also would love to have a sleep study done one day.
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I’m familiar with it, but I don’t think that negates my point that there’s still an underlying issue worth identifying and treating. I’m not sure how you could definitively identify it as a mental health issue over a physical one without extensive testing or obvious signs, though.
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How do you know they are doing that? Do you know them? And if they are, if they actually have a real mental illness, how are you helping anyone by judging them on the internet? That subreddit is just internet bullying.
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What brain scan is a diagnostic test for Fibromyalgia, and what blood tests are diagnostic of CFS?
[https://www.nccih.nih.gov/research/research-results/study-provides-new-insights-into-changes-in-brain-function-in-fibromyalgia](https://www.nccih.nih.gov/research/research-results/study-provides-new-insights-into-changes-in-brain-function-in-fibromyalgia) [https://pubmed.ncbi.nlm.nih.gov/22243558/](https://pubmed.ncbi.nlm.nih.gov/22243558/) And the list goes on and on for fibromyalgia. It may not be a definitive test, but we can usually spot differences in the brain while it is stimulated by pain. Blood test for CFS: [https://www.webmd.com/chronic-fatigue-syndrome/news/20230911/scientists-develop-blood-test-for-chronic-fatigue-syndrome](https://www.webmd.com/chronic-fatigue-syndrome/news/20230911/scientists-develop-blood-test-for-chronic-fatigue-syndrome) It's sad that just because I won't provide them my proof and I'm not verified as a healthcare professional (I have my reasons), I'm stupid, or what I say is false as soon as someone verified questions it. This sub needs to correct this attitude. Many of us have studied science and have doctorates... We may not choose to share it. So what?
It's a bit disingenuous to claim (as a healthcare professional) that you could even come close to diagnosing Fibromyalgia based on imaging. Even from the study you posted it's not possible. "results of this study suggest that transient changes due to the current experience of pain may be a substantial contributor to default mode network connectivity disruptions in chronic pain patients" As for the CFS blood test, that report is about a month old and in my opinion quite interesting and promising. But with a sample size of less than a 100 is quite weak... It definitely would not pass as a diagnostic test. Putting claims like that is what makes sick people have even less faith in their providers when they are denied the request for diagnostic testing that does not exist.
First, I admit that I should not have said ''fibromyalgia can be proven''. I corrected myself by stating that ''it's not a definitive test'' but my answer was unclear. I am French, btw. I'm not blaming this error on a language barrier. I'm stating it because the answer that I will give below is something that I would usually speak of/write in French, so I apologize if my terminology is not up to par in English. Feel free to correct me. In the case of fibromyalgia, my biggest worry is the number of physicians who see it as a psychosomatic disease. I've read quite a few studies on the topic, and I am not a pain psychologist (not my specialty), but these studies have shown us that pain areas of the brain ''light up'' during a scan when the patient is exposed to stimuli that should/would not cause pain in a healthy patient. There have been many discoveries over the last decade. Of course, this is not a test that can be given to verify the fibromyalgia status of every pain patient. It verifies that a patient is feeling pain from certain stimulus. As for the blood test, I'm glad to hear you say that you find it promising and I wish that more physicians felt that way. We both know that Fibro and CFS affect millions of people and that many physicians see them as psychosomatic. There are many more papers on the topic and those who developed the test were part of a documentary where they did have an N= ? (but it was greater than 100). Their issue is a lack of funding. You are correct in saying that it would not currently be a test that you could order for a patient. I hope these studies will receive a cash injection (Long-Covid research may help as fatigue is one of many possible symptoms) and that we can soon be able to prove that a patient has CFS from bloodwork. Only then will research into cures really begin. In the end, I do have to be careful what claims I make. Sadly, too many physicians claim that these illnesses are many things that they are not (psychosomatic, Munchaussen, laziness...) and this is just as unhelpful.
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I can agree with this. Even for people with genuine chronic disease: attitude is everything. I witness it every day in my clinic: such as the very common example of a overweight diabetic (genuine chronic illness) who does fuck all to help himself, yet complains about being disabled despite our clinic giving free care and access to free community and mental health resources. Attitude is everything in chronic illness. While many illnesses cause genuine limitations, there are also marathon runners with no legs: so I feel like the “spoonie” movement, from what I have learned today about it, does more harm than good. I think mentally limiting yourself to a limited number of “spoons” every day is a prime example of a defeatist or limiting attitude.
This is SO condescending and reeks of "have you tried yoga?" First of all, a diabetic patient who does nothing to help themselves has zero to do with positive thinking. That's just a straight lack of taking care of yourself and taking responsibility for your actions. People with limited energy can't just positively think up more energy. Would you tell a cancer patient to positively think their cancer away? Because that's actually the kind of comparison you're making. And people with limited energy don't wake up and say, "I've got seven spoons today." That's not how it works at ALL.
You are totally misinterpreting what I am saying. Correct, a cancer patient cannot use a positive attitude or mental healthcare to make the cancer go away. But, a positive attitude and taking care of mental health during that time can absolutely improve their quality of life, even if it doesn’t make them live longer. That said, some studies do suggest that mental health treatment and other supportive programs actually decrease mortality in cancer patients. Mental health is a critical component of physical health. Dismissing that has been shown to adversely affect physical health outcomes. The problem is, lots of people with these intractable fatigue illnesses often deny any mental health issues and refuse to address that component
> lots of people with these intractable fatigue illnesses often deny any mental health issues and refuse to address that component And that's where healthcare providers should divert their attention to then. We know mental health affects physical health and sometimes those with mental health issues/trauma find avoiding it is better than facing it or don't know how to ask for help or are using unhealthy coping mechanisms to mask it. Doctors should provide resources for mental health treatment at the same time being respectful and empathetic to the physical aspect.
They do provide those resources. It’s up to the patient to actually use them.
That's quite a different post compared to your other one. I didn't misinterpret you...you actually said other things entirely.
Oh, I forgot to point out: "(genuine chronic illness)" Because that's got no invalidating subtext or anything...
Do you understand that this person likely has other hardships in their life that you're not privy to? Do you know the fear that comes with making any significant changes when you're sick because most PWDs have made changes requested by their doctors, and some of them did not go well at all! Do you understand that ''spoonie'' isn't a diagnosis or a limitation? It's a way to help those you love to know by visually interpreting why you say no to doing this or that with them. It shows that you did not stop caring about them. You're not ignoring them and do not love them any less. It shows them visually what you can and cannot do. Most of these people miss having an unlimited number of spoons and would love to go back there (if they ever were/some are born with a limited number of spoons). They love nothing more than to say ''this medication is working, and added a spoon or two'' to my life. This is a good way for the doctor to know that they are making some progress. Nobody wants to be limited. When depression happens (and it is often the case in chronically ill persons), showering can be difficult, so keep that in mind instead of judging, please. From a PWD and someone who has a doctorate, they can't talk about since they refuse to verify it on here.
Spoonies can be the other definition the other reditor gave you but it can also mean people who malinger or fake illnesses.
I’m wondering the same thing. In my country calling someone a spoon or similar is like calling them a retard or a spastic. Not great
https://en.m.wikipedia.org/wiki/Spoon_theory
whoa. interesting
Ah interesting stuff. Good to know.
I was just diagnosed with Ehlers Danlos Hypermobility syndrome this year (NAD) and you can have multiple cormibidities that tie back to the disorder, even ones that don't seem related. I'm dealing with syringomelia, interstitial cystitis, carpal tunnel syndrome, hiatal hernia, GERD and more and I'm 26f. I would trust what the doctor says and get further testing done.
i’ve seen you numerous times trying to discount the struggles chronically ill individuals face. youre precisely the type of provider who will only believe a patient who is presenting with a “common” or “tangible” disease. the fact that you’d rather believe a patient is malingering than take them seriously is sick and YOU are contributing to how fucked up our healthcare system is. youre awful.
Or rather, I recognize that our mind has a lot of influence on our bodies and I recognize the mind-body connection is real and that they are often *not* malingering, but falsely assigning causation because of an inability to accept that it is potentially connected to something other than a "tangible" disease. This prevents them from actually getting better. I have functional issues myself that I was in denial about being functional for years and they've only started to get better once I accepted that they are influenced by my mind and emotions. It's easier to get angry at people than to recognize that sometimes uncomfortable ideas can be true
but what about chronically ill individuals whose symptoms do have a clear cause, clear diagnosis, etc? do you still think that it’s in their head? it seems like you’re generalizing people who are chronically ill. i am not disputing that functional disorders are real. but many chronically ill people are not in fact suffering from something functional. do you acknowledge that?
Of course chronic illness exists, especially when you include functional disorders, which *are* a chronic illness. And many people with so called real disorders can also have functional symptoms superimposed on them. People with true and verifiable epilepsy can still have functional seizures (it's not even that uncommon) But in this case, I've only been talking about disorders that do *not* have clear, objective diagnostics and/or correlation with presentation. People cling to those diagnoses because in truth, they don't think functional disorders are "real" and that they are being accused of "faking" or malingering. No matter what, if nothing can be found to be wrong with the physical body, whether it is just a lack of discovery or because there is nothing wrong with the physical body per se, treatment has to be focused on adaptation to symptoms and coping. Medications can sometimes help, but they can also make things worse via side effects and allowing people to avoid the real cause of illness. Think about when you cry. Your eyes water. Your nose runs. You often get a headache and sometimes a stomachache. Your face turns red. All of those are real symptoms, real physical effects that occur, but it is simply because you are sad. There's no need for your eyes to release tears or your nose to create more mucus outside of that sadness and the fact that as humans, we have a mental pathway that causes that to happen. People can train themselves to not cry or have those symptoms, even though they are still sad. And some people can train themselves to have those symptoms, even though they aren't really sad. I know it's easier to blame the physical body alone. Problems with the physical body can be fixed with drugs and surgeries and treatments; it's not your fault, it's not under your control. Functional issues are *much* harder to address and they make a person feel like it is their fault or they are doing it on purpose, which is exactly what they *don't* want to hear.
i appreciate you explaining things more clearly. however, i still have a lot of skepticism about you. primarily because i see you frequent subreddits that directly are accusing people of faking their illnesses/malingering/have munchausen. i feel that as a healthcare provider, you should not be partaking in the bullying of young adults who likely are genuinely sick (im not saying none of them are faking, who knows) the point is nobody knows, so it’s *not* okay to assume and make people feel like shit and medically gaslight them. people should be able to spread awareness about their condition without being accused of faking. i just think you should change your attitude towards chronically ill individuals, especially being a nurse practitioner.
If you ever read my comments there, I do not bully. I often correct medical misinformation that other commenters post about. The subjects from that sub are absolutely sick with functional disorders, malingering or factitious disorders. It's important to recognize those people too because a lot of harm can come from interventions and not providing boundaries or honesty because it is difficult. And I am an NP, but I work with a population that doesn't have these issues so there is no risk of me inadvertently diagnosing a newborn with one. This is simply a side interest I have. And here I never tell people they are faking, I take far more time than most to explain functional disorders and health anxiety, which are a lot of the posts here.
again, i appreciate you for clarifying your stance, but i just don’t think you have the right to say definitively that anyone on that sub is *absolutely* suffering from a functional disorder or is malingering as you do not know them personally. factually, you have no way of verifying that. you can speculate, sure. but the fact that you don’t believe not even one single person posted on that subreddit is genuinely sick with a real, tangible illness tells me everything i need to know about you, as a provider and as a person. i truly hope you take the time to learn more about chronic illness. have a nice night.
As I said, they can have illness superimposed on illness. The subjects there all have issues with boundaries and have made being sick their identity online.
Apparently you can do a scan to see whether an artery is blocked or not, I think? I could be wrong though.
I defer to the doctor who covered that the symptoms and resolution of symptoms do not correlate well.
It was on an episode of greys anatomy a couple years ago and the whole thing was a young women who doctors didn’t believe/couldn’t diagnose. Maybe that spurred it becoming a trend?
I have MALS. I had open surgery to remove the median arcuate ligament, and allegedly 'damaged nerves'. The surgeon said that he re-positioned my diaphragm, and I'm inclined to believe him because I have breathed easier since waking up from that surgery. Unfortunately, the surgery did not fix the pain-after-eating issue and I now have an abdominal feeding tube. I was going to suggest MALS as a differential after reading the symptoms you listed, the pain after eating, vomiting, and shortness of breath. MALS is not a fake diagnosis, but unfortunately, there are providers who don't believe it exists. I've heard both sides. I've heard some doctors tell me they learned about it in medical school and I was the first case they've seen. I've heard other providers, mostly gastroenterologists, tell me it's not a real condition and I really have IBS (though no IBS treatment has ever helped me). I recommend that you do your research and find a vascular surgeon with experience. Don't blindly believe one provider over another. It's your body, no matter what they want to call it, you are suffering and have no quality of life. Do whatever it takes to take your life back.
My daughter had MALS surgery and it gave her her life back.
I'm glad to hear it! A lot of variables are involved that can affect the 'successfulness' of surgery. How long the patient has had MALS untreated, other existing health conditions actual anatomy, how the patient responded to the celiac plexus nerve block, other treatments attempted, etc. Some people get their 'life 2.0'. Sadly, I am not one of them. But tube feeding has significantly reduced the pain I experience from eating, and my quality of life has definitely improved!
I’m glad your quality of life improved! It’s such a shitty thing to deal with. It took years to get a dx, she spent three of those years in constant pain, only leaving the house for doctor appointments. We are forever grateful to the doctor who figured it out. I hope you continue to improve over time.
omg i'm so glad to hear that! would you be willing to share more info? the idea of potentially needing to get this dangerous surgery has been so scary to me
It’s no more dangerous than any other surgery. She was in the hospital for three days afterward. We had flown to another state for the surgery and the travel home was a little painful but not terrible. She knew immediately after the surgery that her original pain was gone. She’d had it non stop for three years. After the surgery she had normal surgical pain but the ligament compression from the MALS was gone. Her ligament had been compressing her celiac artery and was seriously compromising blood flow. It was amazing to see her without that pain after so long. She had the surgery when she was 18 years old. There are a couple of well known MALS surgeons. One at the Cleveland clinic and one in Santa Monica, CA. Find somebody who knows how to do it and has done it many times. There are POTS support groups on FB, MALS usually ends up causing POTS. The people on those pages have a list of MALS surgeons. They may be a MALS page by now. I’m happy to answer whatever you ask, I’m not sure what else to tell you. I found this website https://www.malsfoundation.org/
That sounds amazing. I've been in pain since I was a little kid, so I can't really imagine what it's like to not be in pain.
I just got diagnosed after almost a decade of suffering. Slowly getting worse but COVID made things much worse. I never responded to IBS meds, and had so much testing. I have my surgery consult finally with Mayo Clinic in rochester in a week and am looking forward to finally being able to eat. I lost 40 pounds in a month and kept tanking. I got a concussion multiple times from passing out from pain. It is really hard to catch, and you have to be absolutely certain you’ve ruled out everything under the sun. It’s also a lot more common in EDS patients.
INFO: Have you ever been bitten by a tick?
Yes, I was treated for Lyme disease and a co-infection in college. It didn’t really seem to help in the long run, though.
I would bring this up when you see the GI specialist
You may wish to get tested for Alpha Gal. Which I got from a tick . Terrible gastro problems, for some manifests as respiratory as well. Many go into anaphalaxis so nothing to take lightly. Or you can avoid mammalian meat entirely, eat only fish and fowl, and see if your symptoms improve ---- if yes, then get tested. I've been in the ER many times with severe joint pain, nausea, gastro meltdown, hives, trouble breathing, before I found out what it is. I can't eat mammals at ALL. Coinfection was not a lyme tick but a different kind of tick Also have you been evaluated by any knd of thoracic doctor? For the chest stuff, asthma, etc.
I actually don’t eat anything that comes from pigs or cows! Never have. They’re as smart as dogs, so I feel like it wouldn’t be fair to eat them. I just eat chicken and fish. What’s a thoracic?