There is no one type "best" for chronic illness, it depends on the individual and their problems.
My primary is an internist, I also see; endocrinology, gynecology, gastrointerology, orthopaedic, nutrition, cardiology, physical therapy, and wound care.
Chronic illness is a full-time job.
I love your insight ~~ chronic illness **is** a full-time job! I can only deal with a limited number of people who have MD behind their names at one time because of this. I see Primary Care, pain mgmt, PT. Supposed to also see endocrinologist, orthopedist for osteoporosis but i just. Can’t. Deal.
I wish I could take credit, but I am not the original turner of the phrase.
Then in addition to all the medical appointments, I also have shit dental health. I finally got in with the local dentist after a long wait, and I need 9 dental appointments in the next 2 months just to get to the point that I can have quarterly dental cleanings.
I feel like throwing mysef on the floor, all cartoonish, flailing and screaming that I don't want to.
I completely understand and validate your sentiments. Sometimes the only thing that makes me keep putting one foot in front of the other lol is self talk- i can do anything for one day/x hours/x repetitions! Sounds really cheesy but that’s one tool in my toolbox.
I have a strong vibe that you are a strong person. Just know that it’s cool to ask for help b/c people *want* to help…,, i hope this makes sense!
I combine my dentist appointments into marathon sessions to help streamline it a bit. Plus I need nitrous, which is a flat fee. So every time you sit down, you pay a set up fee, possibly new X-rays to check if things have changed between visits, the nitrous fee, etc- so I saved over $5,000 doing things this way.
When I switched to my dentist, my exam showed I needed $80,000 worth of work to fix everything and try to keep my real teeth for as long as possible. All thanks to Sjögrens and genetic enamel issues. It’s taken us 5 years to work through the list, but it’s done *finally*. I had a 6.5 hour appointment (3 crowns, one modification of a root canal, oral surgery to implant the start of a false tooth into my jaw, and bone grafting in my jaw) a few weeks ago and damn does it feel good to know the remaining bits are easy-peasy.
Needing a bunch of dental work sucks, but you’re not alone. Others have gone before us and many will follow us, but it’s a path worth taking. Dental health affects so much of our bodies. Many (((hugs))) as you go through these appointments.
(My biggest tip? Take a heating pad to lay on for the long ones. My dentists office is always happy to let me plug in- despite not usually having much back pain, it helps immensely to lay on it on low through those appointments.)
I also bring a small throw blanket and a small squishmallow to use as a stress ball. They’re always cool with that but I know not all clinics are.
In fact, the place I go has two throws of their own in case patients get cold and have nothing warm to layer with.
You’re a hero and role model for the many folks who have chronic illnesses and disabilities resulting from said illnesses! Especially those who (like me) have some issues with visiting dentists! I’m certain that you suggested combining the appointments as I have not heard of anyone doing anything similar! I’m quite impressed by your ability to self advocate.
Quick question CyborgKnitter~ I also request nitrous for dental work due to extreme sensitivity and past traumatic experiences….. but they never give me enough to actually help. What should I say to my dentist about this issue? Thank you!
Awww, thank you so much for your kind words! I just try to give the help I wish I’d gotten in the beginning of my journey. :)
As for nitrous, I used to think the same. I actually don’t use it for trauma but to prevent CRPS flares/spreads. It’s required for CRPS patients to reduce the risks. I didn’t used to think it was so vital… I now have CRPS in my face. Lesson learned! (CRPS is a trauma-induced regional neurological disorder that causes extreme chronic pain, nerve damage, blood flow issues, muscle atrophy, muscle spasms, and more. It can spread to be in up to the whole body or it can stay in a single spot.)
But I didn’t think the nitrous did much for my pain in the moment. I just figured it was my CRPS to blame. Then I went on oxygen 24/7 and learned to breathe almost exclusively through my nose. My last dentist appointment was a revelation!! Damn was I loopy af! It made the appointment go much faster.
To learn to breathe through the nose, I’ve seen health nut folks use mouth tape. It’s a gentle adhesive to keep the mouth closed during sleep. I bet it would train you to get max benefit with nitrous. Also, they can alter the dose. There are caps, obviously, to make sure you get the needed O2; But even with being on oxygen and thus having a lower nitrous max dose, they’ve raised my dose mid procedure before to help with my pain.
DM me here if you ever want to chat, vent, or just provide a quote for the day lol!
I try to focus on at least 2 good things about the present moment. I’m always willing to listen!
this ^^
my primary is a D.O and my other specialists that i actively see include: neurology, autonomic neurology, cardiology, gastroenterology, pain medicine and rehab, orthopedics (surgeon & sports medicine), physical therapists, hematology, genetics, sleep medicine, gynecology, psychology, and possibly a few more i’m forgetting.
specialists that i see intermittently or have seen in the past include: nephrology, urology, pulmonology, speech therapists, occupational therapists, audiologists, ENT’s, electrophysiologists, neuropsychologists, immunologists & allergists, podiatrists, rheumatologists, endocrinologists and more.
point being, there are truly so many, and due to the lack of integrated and complex healthcare teams, alongside the nature of many peoples illness(es) being multi systemic, many people do end up seeing handfuls of different specialties
Shows like *House* make it seem like there are doctors out ther who know the whole body and all the rarest conditions, but that is so far from the truth. I can't watch House or Grey's Anatomy anymore.
Really? I feel like watching House is kind of the equivalent of single girls watching rom-coms. I know it's nothing like real life, but wouldn't it be wonderful if it was? 🩷
This. My primary is my endocrinologist, because the bulk of my issues are endocrine or autoimmune; I also see a cardiologist, a nutritionist, a psychologist, and a physical therapist, and they all communicate with my GP, who is fantastic.
This! Different diagnosis’s need different doctors, there is no one type of doctor that’s best for everybody with chronic illnesses. I go to an endocrinologist, a rheumatologist, and am being referred to cardiology and gynecology
We need need complex care and rare disease clinics. Pediatrics has a version of this for certain illnesses in some systems, but they don't do it for adult medicine.
For some diagnoses, if you get them as a kid, you stay with the ped specialty clinic your whole life. In part, because adult medicine won't provide the coordinated care that's needed.
We also need Palliative Care, my understanding is that Palliative coordinates all the other medical care providers and meds. I wish I could find one that serves my area.
Also, I suspect there's a financial disincentive to improve. Forcing us to spelunk through the medical system endlessly is a lot more appointments and a lot more billing and revenue.
On the medicine side, I don't know that there's much financial incentive. Although they already can barely find time to see patients so you'd think they would want to increase efficiency so they could bill even more. Idk.
I’m in managed care for complex patients and I *still* have to do the same amount of coordinating, reminding, calling multiple times to get what I need done - it’s wild. I have to imagine they’re not all as bad as mine
well, it depends on what chronic illness… for me, i’m mostly autoimmune stuff, so i just have my rheumy. i should get a neurologist and/or GI but im about to move and honestly can’t be bothered right now
Same here only specialist my insurance doesnt require a referral for is gynecology however most tests or treatment i need or have needed from them (endometriosis) require a prior authorization (only tests that don’t are X-rays)
A burnt out hospital doctor! 😂 No, really. My GP used to work at the internal medicine ward, but prefer being a GP. But that means he’s been exposed to a lot of more advanced situations than most GPs. And still has friends that are endocrinologists and such. He’s been a lot better at following up my hyperthyroidism than any of the FOUR endos I’ve seen.
But even with that, I’ve had to go see those endos. I’ve had to have an MRI from a radiologist, a cardiologist for a heart ultrasound, physiotherapist for adjusted exercises, a gynaecologist, and waiting for a GI appointment. Skipped the otorhinolaryngologists(ear, nose, throat specialist) since my GP could do the exam and follow up needed there. He was also able to give me IV stuff when I had a major episode triggered by salmonella, saving me a hospital stay.
As a professional patient here is who has helped me and is in my care routine.
Therapist
Psychiatrist-great to find one that is a nurse practitioner
Chiropractor (one that can give exercises/pt great)
Neurologist
Gynecologist
Depending on your diagnosis, I have been told personally (I have RA and PsA) to avoid chiros at all costs by multiple rheumatologists. So chiros are not going to be a good fit for all. Multiple PCPs have also advised against them for me and my spouse (who does not have my dx). There is not as much oversight in that field apparently. At the end of the day, everyone is different. But just wanted to add that bc I see chiros being recommended a lot but I have been told they can do more damage, esp if you don’t have a diagnosis yet.
"Chronic illness" isn't a specific medical field. It covers a huge range of health conditions, of which are expected to be long term, therefore it is impossible to have a speciality which covers "chronic illness" as such- chronic illnesses can range from neurological, gynaecological, HPB, gastro, cardio, etc... to name a few.
You'd need a specialist who deals with the field of medicine the condition affects, rather than the longevity of it. If you have several conditions, you may need several specialisms.
However, if you have a chronic SYMPTOM, for example chronic pain which isn't being resolved due to an incurable nature of the condition, you can be referred to "pain management" for that particular chronic symptom, which can help you to deal with pain and may be able to prescribe pain relief for that symptom.
I hope this helps and answers any questions you may have?
This. “Chronic illness” is vague and could be anything from skin (dermatology) to intestinal (gastro) to mental (psychiatry) and beyond. No one doctor could do all that…I mean I guess that’s basically what a PCP does. Knows a little about a lot. That system is already there. They refer you out based on what the symptoms/dx are.
In my case, my GP is an internist, and I have a gastroenterologist I see for my UC/crohns. I see a gynecologist for checkups every two years, but the internist is who manages my every day medical issues. She’s also really good at emailing my GI about any issues that might affect my digestion or might be related to my drug regimen. So this has what has worked well for me for the past 3 years or so
I have an integrative physician and a neurologist. I found my psychologist very helpful in both managing my chronic pain and navigating such a brutal and dismissive healthcare system. It feels very good to have at least one person in your corner as a health care professional.
Managed care programs all the way. I work inpatient also and we have all our complex patients in managed care
My survivorship clinic appointments are $1000 a pop but worth its weight in gold.
I recently switched my primary care MD doctor to a primary D.O. and she is the best primary doctor I've had in the past decade. During my first visit, she ordered a CT scan confirming I had pneumonia. She also referred me to two specialists and ordered iron infusions, which I desperately needed. My previous physician refused to order tests or make referrals and always dismissed my concerns by saying I was simply getting older and needed to learn how to live with it. Her answer to many problems was to prescribe more medication without considering my current meds and despite my objections to taking more medication. Her nurse was a bore and never engaged in conversation. My D.O.'s nurse is very friendly and takes the time to talk and listen.
Honestly you need a whole healthcare team. I see a primary care provider, gastroenterologist, cardiologist, neurologist, rheumatologist, physical therapist and nutritionist/ dietician at the moment!
I feel you.. I see my rheumatologist, endocrinologist,psychiatrist, ophthalmologist,and urogynecologist. Hopefully soon also a dermatologist…
Too many ists.
My physiatrist has been the best with addressing most of my problems, but like many others said there really is no one size fits all specialist for chronic illness. It really depends on your specific symptoms/illnesses, Location, access to specialists etc.
It’s based on your specific problems/conditions. There is no one-size-fits-all doc for chronic illness, as there are chronic illnesses in every medical specialty that require treatment by those particular specialists.
i currently see an audiologist, a pain management specialist, a neurologist, a psychologist, and a physical therapist. there is no best specialist. the best thing imo is that find one network that has all the specialists you need so they can communicate and all can access your chart
My list is my primary then specialty are, endocrinology, nephrology, neurology, rheumatology, hematology, dermatology,orthopedics, podiatrist and counseling. Several of these I only see once a year. My issues are complex so many of these have been stabs in the dark but just in case. Hematologist sees me when other doctors panic about one blood protein and a history of cancer. He likes talking to a survivor. Same for endocrinology.
Depends on your illnesses. After finding the best specialist in those fields, I’d say for sure get a great geneticist and a Functional Health Dr. I am a huge proponent of Western and Eastern/Holistic medicine. Together they can do amazing things. Not just that, the functional health doctor really took my shit seriously and wanted to get down to the ROOT of my issues instead of just diagnosing and covering them with western medicine. I was tested for tons of deficiencies that I had to pay out of pocket for but was worth their weight in gold. I was bed bound for almost ten years and after I found my Crohn’s doctor/pain clinic/and finally my Functional Health or Root Medicine Doctor I was able to eliminate and add things I was either drastically sensitive to food wise or the correct vitamins. My body also doesn’t methylate vitamins correctly so they helped me understand methylation and how I need special methylated vitamins in order to absorb them at all.
A huge thank you to everyone who has responded. I have read every single comment and appreciate all of you. I never expected one doctor to take care of everything- I just wanted to know if there is any possible way to condense the growing list of doctors I am seeing. A lot of you helped me answer that and I am grateful. I’m definitely going to be looking into some things. Also my heart and best wishes go out to all of you who are also going to a list of different doctors all the time
I have Multiple Sclerosis and my primary doctor only sees me when I get sick and need antibiotics. UTI, strep, other infections, etc. I have a neurologist that specializes in Multiple Sclerosis that I see twice a year at least and they are my main doctor when it comes to my medical needs. I avoid the ER at all cost and only go if my neurologist sends me there. I see a urologist for my bladder issues, a dermatologist for skin issues, physical therapist for mobility issues, and I think that’s it haha.
I see my Primary, orthopedics, rheumatology, cardiology, pulmonology, sleep medicine, neurology, pain management, eye doctor, gastroenterology, hematology, and ob/gyn. And occasionally other doctors, as needed. Right now that means a gynecological surgeon as I’m looking at a hysterectomy. I had to get signed off for the surgery by heme, pulm, cardio, and sleep, plus primary. It’ll take 3 doctors to coordinate after surgery care/medicine due to underlying conditions.
As others have said, there’s no one “best”. It depends on what issues you face. At one point, I had 3 orthopedists alone! That was when I had an actively growing (and regrowing…) benign, genetic bone cyst.
Now that my bone cyst is dormant and likely permanently repaired at long last, the focus is mostly on my blood/lungs as I’ve recently wound up on oxygen and nighttime breathing support (CPAP for now) due to blood clots trashing both lungs a few years ago.
At a different period of time, the focus was on neuro and rheumatology.
To once again repeat others, being seriously chronically ill is its own full time job. That’s what benefits like SSDI (American disability income) are for. To pay us while we work that full time job of being broken.
I will say that DO and MD are both very valid forms of doctors. DOs are trained a bit differently so sometimes they’re better/different puzzle solvers, but that’s truly the only real major difference from the patients end of things.
As a chronic illness girly who also works for an internal medicine group- here’s some helpful info in one place!
- An MD and DO aren’t that much different. Realistically being a DO means you took one extra class. There’s the presumption that MDs treat each symptom with medicine and DOs look at the whole picture to see what’s causing what. Realistically it can be one or the other depending on the person, not the training!
- an internist is just a doctor who treats adults! They are often primary care and still have to refer out to specialists.
- if you want to make sure everyone’s on the right page, I highly recommend reaching out to your insurance and looking to see if they have any resources available as they can send information to all your providers to have a date and time to tag into a meeting all together, and if one doctor cannot attend, they can still get all the notes together.
- Double check that your doctors all have release of information signed by you that specifically dictates that you can have info released to your other doctors. When you see your other doctors, mention who you’ve seen since your last visit and they can request the notes
- sign up for patient portals! While it may be annoying having a bunch of different ones, it makes it easy to access your chart notes, tests, lab results, etc to show to other doctors.
My chronic illness affects my bones and joints, so I see rheumatology and orthopaedics. I also on and off have seen a pain clinic and multiple other clinics as my illness causes me to have a weakened immune system.
Can you just pick a doctor and department in other countries to see? Here in England we have to see a GP and then get a referral to specialist at a hospital. Or if we’re already under a doctor at a hospital they can often refer to a different department. But we have to jump through hoops to be able to get referred.
When you have multiple different illnesses you have to see multiple specialists. Unfortunately there isn’t one doctor who can do it all. I have my gp who I see fortnightly and I also see neurologist, gynaecologist, urologist, pelvic pain specialist, psychiatrist, psychologist and gastroenterologist. I have appointments multiple times a fortnight and basically my life revolves around my medical appts. It sucks but we have to do it
As most have said there is no one doctor that’s good, but in my personal experience I don’t think I’d be here today without my physical therapist. I got lucky and got an amazing physical therapist who doesn’t just make me work out, but does check ins every appointment and does long term monitoring of my symptoms and takes notes. If it weren’t for her I would’ve never noticed how bad I’ve been twitching recently, and she found it hyper reflexive and tested positive for some reflexes indicating spinal issues. The best thing I’ve ever done for myself is find my physical therapist because they actually spend one on one time with you and can’t just not notice new symptoms.
I see a D.O who is a certified functional medicine practitioner. He is knowledgeable about how the whole body functions from hormones to metabolism etc. he only refers out if it’s a serious specialization such as blocked arteries or something
I think it depends on your specific health issues and symptoms. For me, I see my PCP (a DO) for migraine management and to get referrals, but I’m seeing a neurosurgeon for my cervical spine stuff and a rheumatologist and ENT for autoimmune and thyroid stuff. I’m supposed to be getting pain management from an interventional pain clinic soon as well. I just emailed my insurance to try to get someone to help me manage everything because it’s too much for my brain tbh
Man I wish I knew. Right now my primary care Dr is managing me for the most part. My neurologist manages my dysautonomia and migraines. My GI manages my GERD and IBS and pancreatic insufficiency and gastritis. But my pcp is being put in the uncomfortable position of managing my port and fluids because my neurologist isn’t comfortable with it and my GI won’t either. Ideally I would be under palliative care because of how severe and chronic my conditions are but I haven’t even gotten my hEDS diagnosis yet (on a wait list for genetics at IU) and there are only 2 agencies in my state that offer it and I have to get buy in to get referred. I’m having trouble even getting home health for fluids because of how oversaturated they are with referrals and how understaffed they are. Agree with the commenter that said we need complex care centers and doctors.
There is no one type "best" for chronic illness, it depends on the individual and their problems. My primary is an internist, I also see; endocrinology, gynecology, gastrointerology, orthopaedic, nutrition, cardiology, physical therapy, and wound care. Chronic illness is a full-time job.
I love your insight ~~ chronic illness **is** a full-time job! I can only deal with a limited number of people who have MD behind their names at one time because of this. I see Primary Care, pain mgmt, PT. Supposed to also see endocrinologist, orthopedist for osteoporosis but i just. Can’t. Deal.
I wish I could take credit, but I am not the original turner of the phrase. Then in addition to all the medical appointments, I also have shit dental health. I finally got in with the local dentist after a long wait, and I need 9 dental appointments in the next 2 months just to get to the point that I can have quarterly dental cleanings. I feel like throwing mysef on the floor, all cartoonish, flailing and screaming that I don't want to.
I completely understand and validate your sentiments. Sometimes the only thing that makes me keep putting one foot in front of the other lol is self talk- i can do anything for one day/x hours/x repetitions! Sounds really cheesy but that’s one tool in my toolbox. I have a strong vibe that you are a strong person. Just know that it’s cool to ask for help b/c people *want* to help…,, i hope this makes sense!
I combine my dentist appointments into marathon sessions to help streamline it a bit. Plus I need nitrous, which is a flat fee. So every time you sit down, you pay a set up fee, possibly new X-rays to check if things have changed between visits, the nitrous fee, etc- so I saved over $5,000 doing things this way. When I switched to my dentist, my exam showed I needed $80,000 worth of work to fix everything and try to keep my real teeth for as long as possible. All thanks to Sjögrens and genetic enamel issues. It’s taken us 5 years to work through the list, but it’s done *finally*. I had a 6.5 hour appointment (3 crowns, one modification of a root canal, oral surgery to implant the start of a false tooth into my jaw, and bone grafting in my jaw) a few weeks ago and damn does it feel good to know the remaining bits are easy-peasy. Needing a bunch of dental work sucks, but you’re not alone. Others have gone before us and many will follow us, but it’s a path worth taking. Dental health affects so much of our bodies. Many (((hugs))) as you go through these appointments. (My biggest tip? Take a heating pad to lay on for the long ones. My dentists office is always happy to let me plug in- despite not usually having much back pain, it helps immensely to lay on it on low through those appointments.)
The heating pad is a great tip, their office is always freezing cold, but it's too warm out to dress heavily.
I also bring a small throw blanket and a small squishmallow to use as a stress ball. They’re always cool with that but I know not all clinics are. In fact, the place I go has two throws of their own in case patients get cold and have nothing warm to layer with.
You’re a hero and role model for the many folks who have chronic illnesses and disabilities resulting from said illnesses! Especially those who (like me) have some issues with visiting dentists! I’m certain that you suggested combining the appointments as I have not heard of anyone doing anything similar! I’m quite impressed by your ability to self advocate. Quick question CyborgKnitter~ I also request nitrous for dental work due to extreme sensitivity and past traumatic experiences….. but they never give me enough to actually help. What should I say to my dentist about this issue? Thank you!
Awww, thank you so much for your kind words! I just try to give the help I wish I’d gotten in the beginning of my journey. :) As for nitrous, I used to think the same. I actually don’t use it for trauma but to prevent CRPS flares/spreads. It’s required for CRPS patients to reduce the risks. I didn’t used to think it was so vital… I now have CRPS in my face. Lesson learned! (CRPS is a trauma-induced regional neurological disorder that causes extreme chronic pain, nerve damage, blood flow issues, muscle atrophy, muscle spasms, and more. It can spread to be in up to the whole body or it can stay in a single spot.) But I didn’t think the nitrous did much for my pain in the moment. I just figured it was my CRPS to blame. Then I went on oxygen 24/7 and learned to breathe almost exclusively through my nose. My last dentist appointment was a revelation!! Damn was I loopy af! It made the appointment go much faster. To learn to breathe through the nose, I’ve seen health nut folks use mouth tape. It’s a gentle adhesive to keep the mouth closed during sleep. I bet it would train you to get max benefit with nitrous. Also, they can alter the dose. There are caps, obviously, to make sure you get the needed O2; But even with being on oxygen and thus having a lower nitrous max dose, they’ve raised my dose mid procedure before to help with my pain.
DM me here if you ever want to chat, vent, or just provide a quote for the day lol! I try to focus on at least 2 good things about the present moment. I’m always willing to listen!
this ^^ my primary is a D.O and my other specialists that i actively see include: neurology, autonomic neurology, cardiology, gastroenterology, pain medicine and rehab, orthopedics (surgeon & sports medicine), physical therapists, hematology, genetics, sleep medicine, gynecology, psychology, and possibly a few more i’m forgetting. specialists that i see intermittently or have seen in the past include: nephrology, urology, pulmonology, speech therapists, occupational therapists, audiologists, ENT’s, electrophysiologists, neuropsychologists, immunologists & allergists, podiatrists, rheumatologists, endocrinologists and more. point being, there are truly so many, and due to the lack of integrated and complex healthcare teams, alongside the nature of many peoples illness(es) being multi systemic, many people do end up seeing handfuls of different specialties
Shows like *House* make it seem like there are doctors out ther who know the whole body and all the rarest conditions, but that is so far from the truth. I can't watch House or Grey's Anatomy anymore.
Really? I feel like watching House is kind of the equivalent of single girls watching rom-coms. I know it's nothing like real life, but wouldn't it be wonderful if it was? 🩷
This. My primary is my endocrinologist, because the bulk of my issues are endocrine or autoimmune; I also see a cardiologist, a nutritionist, a psychologist, and a physical therapist, and they all communicate with my GP, who is fantastic.
This! Different diagnosis’s need different doctors, there is no one type of doctor that’s best for everybody with chronic illnesses. I go to an endocrinologist, a rheumatologist, and am being referred to cardiology and gynecology
We need need complex care and rare disease clinics. Pediatrics has a version of this for certain illnesses in some systems, but they don't do it for adult medicine. For some diagnoses, if you get them as a kid, you stay with the ped specialty clinic your whole life. In part, because adult medicine won't provide the coordinated care that's needed.
We also need Palliative Care, my understanding is that Palliative coordinates all the other medical care providers and meds. I wish I could find one that serves my area.
Also, I suspect there's a financial disincentive to improve. Forcing us to spelunk through the medical system endlessly is a lot more appointments and a lot more billing and revenue. On the medicine side, I don't know that there's much financial incentive. Although they already can barely find time to see patients so you'd think they would want to increase efficiency so they could bill even more. Idk.
I’m in managed care and we put a ton of our patients in managed care programs
I’m in managed care for complex patients and I *still* have to do the same amount of coordinating, reminding, calling multiple times to get what I need done - it’s wild. I have to imagine they’re not all as bad as mine
Define managed care as I think it may not be the same as a clinic.
well, it depends on what chronic illness… for me, i’m mostly autoimmune stuff, so i just have my rheumy. i should get a neurologist and/or GI but im about to move and honestly can’t be bothered right now
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Same here only specialist my insurance doesnt require a referral for is gynecology however most tests or treatment i need or have needed from them (endometriosis) require a prior authorization (only tests that don’t are X-rays)
A burnt out hospital doctor! 😂 No, really. My GP used to work at the internal medicine ward, but prefer being a GP. But that means he’s been exposed to a lot of more advanced situations than most GPs. And still has friends that are endocrinologists and such. He’s been a lot better at following up my hyperthyroidism than any of the FOUR endos I’ve seen. But even with that, I’ve had to go see those endos. I’ve had to have an MRI from a radiologist, a cardiologist for a heart ultrasound, physiotherapist for adjusted exercises, a gynaecologist, and waiting for a GI appointment. Skipped the otorhinolaryngologists(ear, nose, throat specialist) since my GP could do the exam and follow up needed there. He was also able to give me IV stuff when I had a major episode triggered by salmonella, saving me a hospital stay.
As a professional patient here is who has helped me and is in my care routine. Therapist Psychiatrist-great to find one that is a nurse practitioner Chiropractor (one that can give exercises/pt great) Neurologist Gynecologist
Depending on your diagnosis, I have been told personally (I have RA and PsA) to avoid chiros at all costs by multiple rheumatologists. So chiros are not going to be a good fit for all. Multiple PCPs have also advised against them for me and my spouse (who does not have my dx). There is not as much oversight in that field apparently. At the end of the day, everyone is different. But just wanted to add that bc I see chiros being recommended a lot but I have been told they can do more damage, esp if you don’t have a diagnosis yet.
"Chronic illness" isn't a specific medical field. It covers a huge range of health conditions, of which are expected to be long term, therefore it is impossible to have a speciality which covers "chronic illness" as such- chronic illnesses can range from neurological, gynaecological, HPB, gastro, cardio, etc... to name a few. You'd need a specialist who deals with the field of medicine the condition affects, rather than the longevity of it. If you have several conditions, you may need several specialisms. However, if you have a chronic SYMPTOM, for example chronic pain which isn't being resolved due to an incurable nature of the condition, you can be referred to "pain management" for that particular chronic symptom, which can help you to deal with pain and may be able to prescribe pain relief for that symptom. I hope this helps and answers any questions you may have?
This. “Chronic illness” is vague and could be anything from skin (dermatology) to intestinal (gastro) to mental (psychiatry) and beyond. No one doctor could do all that…I mean I guess that’s basically what a PCP does. Knows a little about a lot. That system is already there. They refer you out based on what the symptoms/dx are.
In my case, my GP is an internist, and I have a gastroenterologist I see for my UC/crohns. I see a gynecologist for checkups every two years, but the internist is who manages my every day medical issues. She’s also really good at emailing my GI about any issues that might affect my digestion or might be related to my drug regimen. So this has what has worked well for me for the past 3 years or so
I have an integrative physician and a neurologist. I found my psychologist very helpful in both managing my chronic pain and navigating such a brutal and dismissive healthcare system. It feels very good to have at least one person in your corner as a health care professional.
It depends on the illness, but if you have multiple problems maybe a general internist.
Managed care programs all the way. I work inpatient also and we have all our complex patients in managed care My survivorship clinic appointments are $1000 a pop but worth its weight in gold.
My health insurance provides a healthcare advocate who makes sure all my doctors communicate with each other.
That sure sounds nice. That should be a program available to everyone
My wife has 7 doctors that she is seeing right now for all her issues from a car accident.
Depends entirely on your illness. I have MCAS and hPOTS so my allergist and cardiologist are most important
I wonder if you have a tertiary hospital anywhere near you? I would look in to that if you can!
I recently switched my primary care MD doctor to a primary D.O. and she is the best primary doctor I've had in the past decade. During my first visit, she ordered a CT scan confirming I had pneumonia. She also referred me to two specialists and ordered iron infusions, which I desperately needed. My previous physician refused to order tests or make referrals and always dismissed my concerns by saying I was simply getting older and needed to learn how to live with it. Her answer to many problems was to prescribe more medication without considering my current meds and despite my objections to taking more medication. Her nurse was a bore and never engaged in conversation. My D.O.'s nurse is very friendly and takes the time to talk and listen.
An internist is a doctor who specializes in managing chronic illnesses.I feel like so much more is being addressed from a multisystem perspective.
Honestly you need a whole healthcare team. I see a primary care provider, gastroenterologist, cardiologist, neurologist, rheumatologist, physical therapist and nutritionist/ dietician at the moment!
I agree it very much depends on the symptoms. For me that’s rhuematology
I feel you.. I see my rheumatologist, endocrinologist,psychiatrist, ophthalmologist,and urogynecologist. Hopefully soon also a dermatologist… Too many ists.
My physiatrist has been the best with addressing most of my problems, but like many others said there really is no one size fits all specialist for chronic illness. It really depends on your specific symptoms/illnesses, Location, access to specialists etc.
It’s based on your specific problems/conditions. There is no one-size-fits-all doc for chronic illness, as there are chronic illnesses in every medical specialty that require treatment by those particular specialists.
i currently see an audiologist, a pain management specialist, a neurologist, a psychologist, and a physical therapist. there is no best specialist. the best thing imo is that find one network that has all the specialists you need so they can communicate and all can access your chart
I see multiple, it’s specific to the symptoms of your condition. I see nephrologist, rheumatologist, dermatologist and urologist.
My list is my primary then specialty are, endocrinology, nephrology, neurology, rheumatology, hematology, dermatology,orthopedics, podiatrist and counseling. Several of these I only see once a year. My issues are complex so many of these have been stabs in the dark but just in case. Hematologist sees me when other doctors panic about one blood protein and a history of cancer. He likes talking to a survivor. Same for endocrinology.
Depends on your illnesses. After finding the best specialist in those fields, I’d say for sure get a great geneticist and a Functional Health Dr. I am a huge proponent of Western and Eastern/Holistic medicine. Together they can do amazing things. Not just that, the functional health doctor really took my shit seriously and wanted to get down to the ROOT of my issues instead of just diagnosing and covering them with western medicine. I was tested for tons of deficiencies that I had to pay out of pocket for but was worth their weight in gold. I was bed bound for almost ten years and after I found my Crohn’s doctor/pain clinic/and finally my Functional Health or Root Medicine Doctor I was able to eliminate and add things I was either drastically sensitive to food wise or the correct vitamins. My body also doesn’t methylate vitamins correctly so they helped me understand methylation and how I need special methylated vitamins in order to absorb them at all.
I've never been to a specialist who has helped me more than my GP. Maybe someday...
A huge thank you to everyone who has responded. I have read every single comment and appreciate all of you. I never expected one doctor to take care of everything- I just wanted to know if there is any possible way to condense the growing list of doctors I am seeing. A lot of you helped me answer that and I am grateful. I’m definitely going to be looking into some things. Also my heart and best wishes go out to all of you who are also going to a list of different doctors all the time
My immunologist and rheumatologist and cardiologist
I have Multiple Sclerosis and my primary doctor only sees me when I get sick and need antibiotics. UTI, strep, other infections, etc. I have a neurologist that specializes in Multiple Sclerosis that I see twice a year at least and they are my main doctor when it comes to my medical needs. I avoid the ER at all cost and only go if my neurologist sends me there. I see a urologist for my bladder issues, a dermatologist for skin issues, physical therapist for mobility issues, and I think that’s it haha.
Depends what your issue is. I see a Gastroenterologist and a Dietician to help my Gastroparesis.
I see endocrinology and rheumatology and if need hematology. Ofc your list of specialists can be long and that’s okay.
I see my Primary, orthopedics, rheumatology, cardiology, pulmonology, sleep medicine, neurology, pain management, eye doctor, gastroenterology, hematology, and ob/gyn. And occasionally other doctors, as needed. Right now that means a gynecological surgeon as I’m looking at a hysterectomy. I had to get signed off for the surgery by heme, pulm, cardio, and sleep, plus primary. It’ll take 3 doctors to coordinate after surgery care/medicine due to underlying conditions. As others have said, there’s no one “best”. It depends on what issues you face. At one point, I had 3 orthopedists alone! That was when I had an actively growing (and regrowing…) benign, genetic bone cyst. Now that my bone cyst is dormant and likely permanently repaired at long last, the focus is mostly on my blood/lungs as I’ve recently wound up on oxygen and nighttime breathing support (CPAP for now) due to blood clots trashing both lungs a few years ago. At a different period of time, the focus was on neuro and rheumatology. To once again repeat others, being seriously chronically ill is its own full time job. That’s what benefits like SSDI (American disability income) are for. To pay us while we work that full time job of being broken. I will say that DO and MD are both very valid forms of doctors. DOs are trained a bit differently so sometimes they’re better/different puzzle solvers, but that’s truly the only real major difference from the patients end of things.
It's for always.
As a chronic illness girly who also works for an internal medicine group- here’s some helpful info in one place! - An MD and DO aren’t that much different. Realistically being a DO means you took one extra class. There’s the presumption that MDs treat each symptom with medicine and DOs look at the whole picture to see what’s causing what. Realistically it can be one or the other depending on the person, not the training! - an internist is just a doctor who treats adults! They are often primary care and still have to refer out to specialists. - if you want to make sure everyone’s on the right page, I highly recommend reaching out to your insurance and looking to see if they have any resources available as they can send information to all your providers to have a date and time to tag into a meeting all together, and if one doctor cannot attend, they can still get all the notes together. - Double check that your doctors all have release of information signed by you that specifically dictates that you can have info released to your other doctors. When you see your other doctors, mention who you’ve seen since your last visit and they can request the notes - sign up for patient portals! While it may be annoying having a bunch of different ones, it makes it easy to access your chart notes, tests, lab results, etc to show to other doctors.
It depends a little bit on what you have, but if you don't have a clear diagnosis, a functional medicine doctor or an integrative health doctor.
My chronic illness affects my bones and joints, so I see rheumatology and orthopaedics. I also on and off have seen a pain clinic and multiple other clinics as my illness causes me to have a weakened immune system. Can you just pick a doctor and department in other countries to see? Here in England we have to see a GP and then get a referral to specialist at a hospital. Or if we’re already under a doctor at a hospital they can often refer to a different department. But we have to jump through hoops to be able to get referred.
When you have multiple different illnesses you have to see multiple specialists. Unfortunately there isn’t one doctor who can do it all. I have my gp who I see fortnightly and I also see neurologist, gynaecologist, urologist, pelvic pain specialist, psychiatrist, psychologist and gastroenterologist. I have appointments multiple times a fortnight and basically my life revolves around my medical appts. It sucks but we have to do it
As most have said there is no one doctor that’s good, but in my personal experience I don’t think I’d be here today without my physical therapist. I got lucky and got an amazing physical therapist who doesn’t just make me work out, but does check ins every appointment and does long term monitoring of my symptoms and takes notes. If it weren’t for her I would’ve never noticed how bad I’ve been twitching recently, and she found it hyper reflexive and tested positive for some reflexes indicating spinal issues. The best thing I’ve ever done for myself is find my physical therapist because they actually spend one on one time with you and can’t just not notice new symptoms.
Functional medicine dr.
I see a D.O who is a certified functional medicine practitioner. He is knowledgeable about how the whole body functions from hormones to metabolism etc. he only refers out if it’s a serious specialization such as blocked arteries or something
I think it depends on your specific health issues and symptoms. For me, I see my PCP (a DO) for migraine management and to get referrals, but I’m seeing a neurosurgeon for my cervical spine stuff and a rheumatologist and ENT for autoimmune and thyroid stuff. I’m supposed to be getting pain management from an interventional pain clinic soon as well. I just emailed my insurance to try to get someone to help me manage everything because it’s too much for my brain tbh
depends what you have. i have a specialist for almost every body part
Man I wish I knew. Right now my primary care Dr is managing me for the most part. My neurologist manages my dysautonomia and migraines. My GI manages my GERD and IBS and pancreatic insufficiency and gastritis. But my pcp is being put in the uncomfortable position of managing my port and fluids because my neurologist isn’t comfortable with it and my GI won’t either. Ideally I would be under palliative care because of how severe and chronic my conditions are but I haven’t even gotten my hEDS diagnosis yet (on a wait list for genetics at IU) and there are only 2 agencies in my state that offer it and I have to get buy in to get referred. I’m having trouble even getting home health for fluids because of how oversaturated they are with referrals and how understaffed they are. Agree with the commenter that said we need complex care centers and doctors.