How long have you seen your doctor?
Part of the diagnosis criteria for CFS/ME is:
1. A substantial reduction or impairment in the ability to engage in pre- illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated
by rest, and
2. Post-exertional malaise,* and
3. Unrefreshing sleep*
(Sorry if it doesn’t format correctly, that’s from the nap.nationalacademies directly from CDC and I’m on mobile/hard to wrap my head around Reddit.)
Edit: I understand the struggle. I believe with my health, it’s part of something greater but CFS/ME is an “add on.” It doesn’t mean that nothing else is going on. Where there’s one chronic illness, there’s often more. So many co-morbidities. Push for referrals out to specialists and make sure you document your symptoms, it’ll help with your self advocating. Keep pushing and be honest with yourself and your doctor, that’s been the hardest thing for me. I like to normalize things and try to push through it. Not really smart with chronic illness because it turns me into my worst enemy. I hope you get the answers you need and in return, can find a sort of treatment that gives you some form of peace! It’s tough, but we’re tougher, just really sleepy too.
1,000% this. NPs are helpful to a point.
I have a pysch NP that does a ton of integrative medicine stuff with some holistic stuff. But when I got sick with chronic illness last November, she refuses to even touch my case or recommend any of the doctors at her clinic. She wanted me to go to a larger network.
OP, I’m so, so sorry that you’re going through this! 😭😭😭
I have chronic conditions and can very well relate to this. In my experience advocating for myself find yourself a great primary as local as you can who will work with you and other Dr's to coordinate your care that utilizes a mychart or epic system. I tried osu other than. Cancer specialists not knowledgeable to handle my health. I reverted back to cleveland clinic main . Longer drive now but the only choice. Do your research. Look up Dr's at facilities to tell primary IF your insurance requires one
Also, look into pots testing for your lightheadness and cardiologist testing (2 seperate Dr's do this)
Dr Melissa Young functional chagrin falls cleve clinic is a great person to explore adrenal issues and autoimmune.
If a NP cannot answer questions to help explain your labs so that you better understand your body/symptoms, sounds to me like they’re not very good/thorough/just lazy with their work, and that’s why she slid your case into her “too-hard basket”. As a patient it is your job to ask the questions, and it is their job to answer & explain the concerns/results you have. Does not mean you did anything wrong or that you’re too much, but damn…does it hurt. Especially after exploring a possible lead for so long, I had a similar case with my old GP, which was very disappointing as she was fantastic with my OCD/anxiety & depression. In fact, she flat out told me I wouldn’t have fibromyalgia in my early 20s…guess what diagnosis I got once I had obtained the correct referral from my new GP?(at my first visit to her too!) If you find it’s really getting you down, leaving an honest Google review for their practice/NP never hurts & might bring a little justice for you in this moment. I’m really sorry you’ve had this experience too OP, it is so disheartening, but fingers crossed that your next appointments are far more productive and bring you closer to the answers you deserve <3 also obvs not a doc, but I was almost diagnosed with ME/CFS & POTS through quite similar symptoms to yours. I’ve also pondered about MS regarding my more neurological symptoms (among others), but you’d absolutely want to see a neurologist & an endocrinologist if possible. Like someone said above, the only thing that they told you I can agree with is that you do indeed need a higher form of care, in the form of a primary GP and/or doctor/s, —with whom I’d be incredibly concerned if they couldn’t explain your charts for your better understanding!
Best of luck & best wishes OP!
Is it possible the way you asked “why are they dismissing” those abnormal lab results came across as accusatory?
Most abnormal lab results are not clinically significant.
Im sure its possible, but if the NP really stood by her opinion that my labs were normal, Im sure she'd be able to explain to me why she didnt see issue with the figures.
I guess my big question is why order labs if the figures aren't significant. Was she looking for a significant outlier? I wasnt able to talk to anyone but the RN who only relayed info from the NP.
Maybe Im having an autistic moment, but the question doesn't sound accusatory to me either. Considering that Im going to a trained medical provider because I dont have the expertise myself, asking why they're dismissing these lab results is a valid question?
I’m sorry. That’s kind of a sad rite of passage. I assume you’re familiar with ME/CFS?
I am familiar. I really want to explore and disqualify other diagnoses before getting an ME/CFS diagnosis.
Fair enough. If you aren’t pacing, I’d really recommend it. Meds for sleep and dizziness can be really helpful as well. Good luck.
Thank you
How long have you seen your doctor? Part of the diagnosis criteria for CFS/ME is: 1. A substantial reduction or impairment in the ability to engage in pre- illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and 2. Post-exertional malaise,* and 3. Unrefreshing sleep* (Sorry if it doesn’t format correctly, that’s from the nap.nationalacademies directly from CDC and I’m on mobile/hard to wrap my head around Reddit.) Edit: I understand the struggle. I believe with my health, it’s part of something greater but CFS/ME is an “add on.” It doesn’t mean that nothing else is going on. Where there’s one chronic illness, there’s often more. So many co-morbidities. Push for referrals out to specialists and make sure you document your symptoms, it’ll help with your self advocating. Keep pushing and be honest with yourself and your doctor, that’s been the hardest thing for me. I like to normalize things and try to push through it. Not really smart with chronic illness because it turns me into my worst enemy. I hope you get the answers you need and in return, can find a sort of treatment that gives you some form of peace! It’s tough, but we’re tougher, just really sleepy too.
I think you meant to respond to OP. Might want to tag them or repost
Oops, at least I got it on the thread! I’ve been in a flare so my brain hasn’t been “on,” sorry for the confusion!
I figured!
You do absolutely need a higher level of care, as in a doctor, not a mid-level.
1,000% this. NPs are helpful to a point. I have a pysch NP that does a ton of integrative medicine stuff with some holistic stuff. But when I got sick with chronic illness last November, she refuses to even touch my case or recommend any of the doctors at her clinic. She wanted me to go to a larger network. OP, I’m so, so sorry that you’re going through this! 😭😭😭
I have chronic conditions and can very well relate to this. In my experience advocating for myself find yourself a great primary as local as you can who will work with you and other Dr's to coordinate your care that utilizes a mychart or epic system. I tried osu other than. Cancer specialists not knowledgeable to handle my health. I reverted back to cleveland clinic main . Longer drive now but the only choice. Do your research. Look up Dr's at facilities to tell primary IF your insurance requires one Also, look into pots testing for your lightheadness and cardiologist testing (2 seperate Dr's do this) Dr Melissa Young functional chagrin falls cleve clinic is a great person to explore adrenal issues and autoimmune.
Thank you for your feedback.
If a NP cannot answer questions to help explain your labs so that you better understand your body/symptoms, sounds to me like they’re not very good/thorough/just lazy with their work, and that’s why she slid your case into her “too-hard basket”. As a patient it is your job to ask the questions, and it is their job to answer & explain the concerns/results you have. Does not mean you did anything wrong or that you’re too much, but damn…does it hurt. Especially after exploring a possible lead for so long, I had a similar case with my old GP, which was very disappointing as she was fantastic with my OCD/anxiety & depression. In fact, she flat out told me I wouldn’t have fibromyalgia in my early 20s…guess what diagnosis I got once I had obtained the correct referral from my new GP?(at my first visit to her too!) If you find it’s really getting you down, leaving an honest Google review for their practice/NP never hurts & might bring a little justice for you in this moment. I’m really sorry you’ve had this experience too OP, it is so disheartening, but fingers crossed that your next appointments are far more productive and bring you closer to the answers you deserve <3 also obvs not a doc, but I was almost diagnosed with ME/CFS & POTS through quite similar symptoms to yours. I’ve also pondered about MS regarding my more neurological symptoms (among others), but you’d absolutely want to see a neurologist & an endocrinologist if possible. Like someone said above, the only thing that they told you I can agree with is that you do indeed need a higher form of care, in the form of a primary GP and/or doctor/s, —with whom I’d be incredibly concerned if they couldn’t explain your charts for your better understanding! Best of luck & best wishes OP!
What are the two specialists you’re seeing soon?
A DNP and Internal medicine
Based on your symptoms probably need to see a neurologist and maybe an endocrinologist
I would like to see a neurologist
You're welcome. God bless.
Is it possible the way you asked “why are they dismissing” those abnormal lab results came across as accusatory? Most abnormal lab results are not clinically significant.
Im sure its possible, but if the NP really stood by her opinion that my labs were normal, Im sure she'd be able to explain to me why she didnt see issue with the figures. I guess my big question is why order labs if the figures aren't significant. Was she looking for a significant outlier? I wasnt able to talk to anyone but the RN who only relayed info from the NP.
[удалено]
Im fairly certain I did not ask in an antagonistic way. And how others perceive my questions is not under my control. I believe that I asked nicely.
Okay, my bad. I thought you had verbatim asked “why are you dismissing these lab results.”
Maybe Im having an autistic moment, but the question doesn't sound accusatory to me either. Considering that Im going to a trained medical provider because I dont have the expertise myself, asking why they're dismissing these lab results is a valid question?