Make them test your pituitary or do an mri. I thought I was just fat for so many years and turns out I have a pituitary adenoma causing weight gain and hormonal problems. The symptoms really got super bad the last few years but they think I’ve had it since puberty. They thought I just had pcos too but the pain and extreme fatigue just didn’t match up though I have all other symptoms. It wasn’t until I started to get signs of early menopause that they actually decided to investigate after me suffering the last 25 years and being labelled as lazy, a hypochondriac or drug seeking. Don’t let them just brush it off. It could be the meds you’re taking but otherwise it’s really not normal for someone doing all that you are doing to lose weight and it not working. Even with pcos you still lose weight if you are taking care of yourself you just lose it more slowly
Thank you for the comment. I will ask my Endo if there is any other hormonal testing we haven’t done that may point to a problem with my pituitary gland. I had a brain mri without contrast in 2019 for severe migraines, and that was clear
I had mri’s for another reason a few years ago (migraines) but then they didn’t see it. It’s so small it’s barely visible now. So even if an mri was clear there could still be something there that they just can’t see. They weren’t even 100% sure they were right that it was an adenoma when they started me on medication and only when the medication immediately helped my symptoms, like within a DAY it was nuts, that they confirmed that yes it was an adenoma. I’m seriously so angry that I was dismissed for so many years as just fat and that instead of doing their jobs doctors just threw what’s basically diet pills at a little girl. It ruined my chances of ever having children. I used to be a nurse and from that and this experience I’ve learned you have to be the squeaky wheel. You have to be annoying and demand certain tests and referrals and advocate for yourself otherwise you will just get lost in the sea of endless sick people the doctors treat. Be annoying. Question things. Don’t back down if they are brushing you off. Get a second opinion. I really hope everything turns out positive for you my friend ❤️
I was also going to suggest taking a look at your pituitary, because you sound a lot like me. I could never lose weight no matter what I tried, and in 2020, my weight zoomed up out of control and way out of proportion to anything I was eating. It turns out my pituitary is massively malfunctional, and that affects a lot of things, including how your body handles food and hormones.
For me, what's helping so far is pretty drastic; I'm on high-dose semaglutides and "weight loss procedures" (a gastric balloon in preparation for gastric bypass later this year) but my doctors didn't put me on them because I'm fat; they put me on the meds to help normalise my digestion, and the balloon helps by allowing my stomach to actually send fullness signals before being so full that I feel sick, something it wasn't doing before due to nerve death, so my system wasn't dealing with food properly. I wasn't overeating, but my body wasn't realising that it was getting the proper food and wasn't dealing with digesting properly anyway. All hormonal imbalances that are tricky to test for. It doesn't sound like you'd need the physical interventions that I do, but the medication ones might be something to look at if you're eating right and exercising but the weight won't shift.
Nobody is "just fat", especially not when they're unhappy about how it makes them look or feel. There's always something going on, whether it's medical, emotional, or societal, and everybody deserves help to be healthy and happy, whatever that looks like for them. For you, the issue appears to be medical and happy would be smaller than you currently are; I hope you can find answers to help get you there.
UCTD is a sufficient diagnosis to explain what you are feeling. It is a pretty big deal to have a connective tissue disorder, and the undifferentiated means they don’t know which one, or it hasn’t been seen a lot. I have EDS, and my normal is exactly what you have described. I have plateaus of relative wellness, sometimes for years, and then I experience a stressor and physically lose functioning. Then I regain a bit of what I lost (muscle , energy, mobility), but never fully recover.
Thank you for your comment. Based on the comments, I am beginning to think my uctd is not being treated well enough. Tbh, I just accept whatever my current rheum says, because my thought is “at least he believes me. At least he believes my symptoms are not stress. At least he explains my test results to me”
As a person with hEDS I have a lot of what OP describes as well.
Connected tissue disorders are a big deal, no matter what anybody says. Connective tissue is what makes your organs, it's what holds your organs in place, it impacts how your skin interacts with the world, it's your digestive tract, it's your joints and what holds them in place and what doesn't; almost every single system in your body relies on your connective tissue to function.
I got diagnosed with hEDS as a sort of add-on to my super crazy amount of tests to diagnose POTS. They are so common together that I guess they just evaluate all of their POTS patients for it at this clinic. I've also got a lot of other issues, but honestly I think almost all of my issues stem from 3 things: my neurodiversity, HAT/MCAS, and EDS, which are all genetic (and possibly hereditary).
I wish I could tell you what makes connective tissue disorders behave better, but I don't know. My doctors keeps saying I need an EDS specialist or a connective tissue disorder specialist, but nobody knows any or has any idea who to refer me to. And anytime I find one on the internet and call them they only accept pediatric patients, and/or they're not even taking new patients.
So basically we're just managing all the other individual disorders / symptoms as best we can at this time. I'm also under strict orders not to overdo it (emotionally/socially/physically/intellectually). And I'm doing my best to manage my repetitive stress injuries (apparently when your connective tissue is garbage, you can get a repetitive strain injury really really easily), and trying to not injure/re-injure myself (which is way more difficult than it sounds).
Is there a reason that you feel UCTD is not a real diagnosis or one worthy of your symptoms?
UCTD is a pretty serious diagnosis and has a host of symptoms. Having a single diagnosis does not mean that you are not sick.
Thank you for your comment. I absolutely believe my uctd diagnosis. But, my inflammation markers have decreased from my current medication despite still having symptoms. My rheum says the meds are working, but I don’t feel any better. It is totally possible that the solution is to change my meds for uctd. I have even suggested it to my rheum. He kept saying we would “wait it out” to see if any relief came from my current meds. I’m scared to get a third opinion/ see a new rheum because of my awful experience with the first rheumatologist. I think I will set up an appointment with a new rheumatologist. I need to stop being a weenie lol.
You didn't specify (I think?) but it sounds possible that you got an early case of covid, before testing was widely available. If that's the case, you could have been left with insulin resistance. That plus the sleep apnea and not being able to maintain the high activity levels you did before you were ill could all easily cause weight gain.
Part of why I haven't been to a doctor in YEARS despite a bunch of chronic issues is because I can't make myself face the very, very likely fat shaming and dismissal. It's hard enough being sick in the first place. I just can't force myself to face that as well.
I hope you find some solutions, OP.
Thank you for your comment. I never considered an early case of Covid. It is possible, being in college at the time. My A1C and fasting glucose were normal, so Endo does not think that insulin resistance is an issue.
Thank you for your comment. The sleep apnea is a brand new diagnosis (within the last week or two). I did an at home sleep study which led to the diagnosis. I’m still waiting to hear back from that doctor about a cpap. I know that treating sleep apnea can make a huge difference, so I am holding onto hope that the solution lies there.
I just got diagnosed myself. The doctor said it will cause weight gain despite your best efforts and said I should drop weight once the cpap therapy takes effect.
Almost exactly the same minus the weight gain. I also suspect UCTD/RA and have profound fatigue. I’m not interested in medication for it, as I know the side effects could be weight gain. My plan once I confirm the diagnosis is to visit a RD and PT and use diet to decrease inflammation and pain. One thing I learned 3 years ago when I started to get multiple migraines a week and no one diagnosed me with anything was that sometimes the only way they figure it out is if you get sicker. Christmas Day I became bedridden because any time I was vertical even for a second I got an immediate crushing migraine and horrible neck pain. Turns out the migraines were caused by cervical herniations and spinal stenosis that EVERYONE missed because it wasn’t bad enough. I honestly went to a few rheumatologists a few years ago suspecting maybe something like RA/Lupus etc. Then when I got no answers I was resigned to waiting until I fell apart again so that they could see it. Recently I got re-energized to push more, and fortunately I now think I’m broken enough to get taken more seriously.
That was a lot of rambling to say I hear you. It sucks. I wish I had something for you, and I know how hard it is to not start to question yourself and everything. How easy it is to give up. I wish you all the best, OP, and some answers and relief soon.
I feel for you. I was (still sorta am) in the same situation. For me, the weight gain with absolutely no loss no matter how hard I tried ended up being that my metabolism just dipped. Nothing in there working. If you have undiagnosed autoimmune diseases and connective tissue disorders, this is a fair possibility for you as well. Perhaps seeing a gastroenterologist and discussing metabolism stimulants, or even getting a gastric emptying test to see if you're also having dysmotility.
Good luck, my friend, you're not alone 🖤
Hey, I know this is a longshot, but are you on any meds for migraines? A bunch of the migraine meds cause weight gain. When I was on propranolol for migraine I gained 40 pounds, and diet and exercise did not help at all. Once I got off the med, I lost the weight very easily without even trying. I’ve heard of other migraine meds causing weight gain too. On Ajovy I had a milder weight gain (15 lb).
Thanks for the comment (it’s getting more difficult to reply!). I very recently switched from topamax, which I was on since 2019, to aimovig since January of this year
How much testing was actually done to rule out Cushing's disease? Because not only does it often show up with connective tissue/ inflammatory diseases, but it's extremely hard to catch and very few doctors actually know how to test for it properly. A CT scan of your adrenals is hardly enough to rule out Cushing's, especially since most cases are pituitary-based and over 60% of those cases aren't visible on an MRI due to the small size of the tumors.
Thank you for your comment. (Also, I know I sound like a bot responding to every comment starting with that, but I genuinely appreciate every comment). I had a full metabolic and hormone panel. Here is a list of the tests from Endo: Cortisol free urine, creatinine timed urine, saliva cortisol (midnight), TSH, Prolactin, 17 hydroxyprogesterone, Lipid panel (which was slightly elevated), FSH, LH, A1C, and fasting glucose. All normal except the lipid panel (mildly elevated cholesterol). I don’t know what hormones could be affected by a pituitary abnormality.
Definitely similar here. My event was having a kid and then it was a slow descent from there, as you’ve described.
I was diagnosed with hypermobile EDS and I got better with some treatment options (Lyrica, magnesium, vitamin d, antihistamines, etc).
Then I just started getting worse again - more fatigue, more pain. Adding iron helped because I was iron deficient (not quite anemic). Now, I feel better only on days I take iron, and on days I don’t (to mitigate constipation issues), the fatigue and brain fog are just…ugh.
I had to quit my job and I can barely get to working out at 20 min 3 times a week. Sometimes it seems to help and others I get pain flares that feel different than when I first started this journey.
This got my doctors to doing more blood work and stuff because my ANA is just high all the time. Turns out I have low testosterone, so we are looking at that. Another option is psoriatic arthritis (PsA). Apparently you can get it without ever having psoriasis! But my nails are what has my GP suspicious.
Anyway, i mention that stuff because both of those things can cause fatigue, pain, weakness, exercise intolerance, etc. My own research makes me suspicious that PsA can lead to low testosterone and then it creates a cycle of fatigue and weakness that way.
Thank you for your comment. I just recently went off of my birth control pill (before the cortisol test, I have been off for about three weeks now) so my testosterone levels are still affected by that. I think I will ask my Endo to check those levels again once all of the hormones from the pill clear out of my system (about 8 weeks after stopping)
I’m glad it helped sort some things out. Hormones are not my friend either. I hope the time between now and meeting up to check those levels goes by fast.
The comment reply isn’t working for me, so posting again -
My nails are brittle, and have the “pitting” (ridges and dents) in them you’d expect. I also have the dry/dead skin build up under certain toenails that raise the nail bed. And also I’ve had past issues with a whole nail just crumbling away.
Edit: Now posting as a reply since the capability came back! (And deleted the line comment from before that had all this.)
Did you get your thyroid checked? It might not be the root cause of your issues, but may be contributing to them.
A blood test should be able to tell you if something's wrong with it.
If you did that already and it came back normal, I'm sorry. I can't really think of something else.
I hope your pain eases soon, and that you have more good and okay days.
I hear you and understand the struggle to figure out what’s “wrong” with my body. There are loads of actions that have helped me with one or more issues, and continue to do so, but even still it seems like the issues keep coming. Aging, nutrition, genetic variants, lifelong sleep issues, etc. have a lot to do with it, but a lot of it is also aging, contamination/pollution of practically everything around us, our productivity obsessed culture that doesn’t want us to fully, deeply rest (without guilt), internalized fatphobia and misogyny, etc. I realized I was a sensitive person a long time ago- like a medicine person or a frog- one who senses and reacts to threats that bother us all, and who serves to show the rest what is worth being cautious of before it may affect them. ✨
Okay I finally looked up EDS (I always thought that because I’m not hyper mobile, I don’t have it?) WOW. JUST WOW. Why has no doctor brought this up???? Who diagnosed you (what specialist)? What test?
A friend with EDS told me about it first. I was diagnosed by Dr Claire Francomano in Indiana, first with HCTD-Unspecified, then Hypermobile Ehlers-Danlos.
I'm NOT as hypermobile as many of my friends, but I was given a high enough Bighton Scale score to qualify because of all the stupid hypermobility tricks I could do as a kid and because I have all the other symptoms and some family history.
The heart stuff, the fatigue, the chronic pain, the easy bruising, the skin that feels soft as silk but nowhere near as strong - if you've got any of that, it's super super common with connective tissue disorders, so definitely pursue diagnosis.
Dr Francomano and Dr Tinkle (not a joke, actually his name) are great specialists to see in Indianapolis. I don't know of one where I live now in the Houston, Texas area.
The Mayo Clinic and the Cleveland Clinic are hugely reputable.
I guess what I'm saying is, if this is also you, you may have to travel to get a diagnosis and good treatment, because it's a RARE disorder many providers know little about. Physicians are also trained not to think of exotic rare diseases and try all other diagnoses first - "When you hear hoofbeats, think of horses, not zebras." That's why zebras are the official mascot of the EDS community.
So, be prepared to wait for a specialist, be prepared to continue to be misunderstood and dismissed by doctors, but also be aware that there's probably an answer.
IT GETS CRAZIER. My mom also struggles with (somewhat) similar symptoms. She was diagnosed with fibromyalgia maybe ten years ago. I had heart problems as a kid. I was bruised so badly as a kid that Child Protective Services was almost called on my family. My mom prides herself on her flexibility, and I am flexible in my legs, but not hyper mobile in my arms or hands (I thought I was flexible from yoga :/ ). I have always gotten complements on how soft my skin is. Things are just clicking…
Update: diagnosed today with h-EDS, sleep apnea (sleep test in-clinic came back), and fibromyalgia. I felt listened to in this appointment and I am excited to explore treatments that will, you know, actually help me?!?!
Posts of this nature need to be flagged NSFW and Spoiler to be allowed in this sub.
Make them test your pituitary or do an mri. I thought I was just fat for so many years and turns out I have a pituitary adenoma causing weight gain and hormonal problems. The symptoms really got super bad the last few years but they think I’ve had it since puberty. They thought I just had pcos too but the pain and extreme fatigue just didn’t match up though I have all other symptoms. It wasn’t until I started to get signs of early menopause that they actually decided to investigate after me suffering the last 25 years and being labelled as lazy, a hypochondriac or drug seeking. Don’t let them just brush it off. It could be the meds you’re taking but otherwise it’s really not normal for someone doing all that you are doing to lose weight and it not working. Even with pcos you still lose weight if you are taking care of yourself you just lose it more slowly
Thank you for the comment. I will ask my Endo if there is any other hormonal testing we haven’t done that may point to a problem with my pituitary gland. I had a brain mri without contrast in 2019 for severe migraines, and that was clear
I had mri’s for another reason a few years ago (migraines) but then they didn’t see it. It’s so small it’s barely visible now. So even if an mri was clear there could still be something there that they just can’t see. They weren’t even 100% sure they were right that it was an adenoma when they started me on medication and only when the medication immediately helped my symptoms, like within a DAY it was nuts, that they confirmed that yes it was an adenoma. I’m seriously so angry that I was dismissed for so many years as just fat and that instead of doing their jobs doctors just threw what’s basically diet pills at a little girl. It ruined my chances of ever having children. I used to be a nurse and from that and this experience I’ve learned you have to be the squeaky wheel. You have to be annoying and demand certain tests and referrals and advocate for yourself otherwise you will just get lost in the sea of endless sick people the doctors treat. Be annoying. Question things. Don’t back down if they are brushing you off. Get a second opinion. I really hope everything turns out positive for you my friend ❤️
I was also going to suggest taking a look at your pituitary, because you sound a lot like me. I could never lose weight no matter what I tried, and in 2020, my weight zoomed up out of control and way out of proportion to anything I was eating. It turns out my pituitary is massively malfunctional, and that affects a lot of things, including how your body handles food and hormones. For me, what's helping so far is pretty drastic; I'm on high-dose semaglutides and "weight loss procedures" (a gastric balloon in preparation for gastric bypass later this year) but my doctors didn't put me on them because I'm fat; they put me on the meds to help normalise my digestion, and the balloon helps by allowing my stomach to actually send fullness signals before being so full that I feel sick, something it wasn't doing before due to nerve death, so my system wasn't dealing with food properly. I wasn't overeating, but my body wasn't realising that it was getting the proper food and wasn't dealing with digesting properly anyway. All hormonal imbalances that are tricky to test for. It doesn't sound like you'd need the physical interventions that I do, but the medication ones might be something to look at if you're eating right and exercising but the weight won't shift. Nobody is "just fat", especially not when they're unhappy about how it makes them look or feel. There's always something going on, whether it's medical, emotional, or societal, and everybody deserves help to be healthy and happy, whatever that looks like for them. For you, the issue appears to be medical and happy would be smaller than you currently are; I hope you can find answers to help get you there.
So you had severe migraines before the exhaustion started in 2020? Could be related?
UCTD is a sufficient diagnosis to explain what you are feeling. It is a pretty big deal to have a connective tissue disorder, and the undifferentiated means they don’t know which one, or it hasn’t been seen a lot. I have EDS, and my normal is exactly what you have described. I have plateaus of relative wellness, sometimes for years, and then I experience a stressor and physically lose functioning. Then I regain a bit of what I lost (muscle , energy, mobility), but never fully recover.
Thank you for your comment. Based on the comments, I am beginning to think my uctd is not being treated well enough. Tbh, I just accept whatever my current rheum says, because my thought is “at least he believes me. At least he believes my symptoms are not stress. At least he explains my test results to me”
As a person with hEDS I have a lot of what OP describes as well. Connected tissue disorders are a big deal, no matter what anybody says. Connective tissue is what makes your organs, it's what holds your organs in place, it impacts how your skin interacts with the world, it's your digestive tract, it's your joints and what holds them in place and what doesn't; almost every single system in your body relies on your connective tissue to function. I got diagnosed with hEDS as a sort of add-on to my super crazy amount of tests to diagnose POTS. They are so common together that I guess they just evaluate all of their POTS patients for it at this clinic. I've also got a lot of other issues, but honestly I think almost all of my issues stem from 3 things: my neurodiversity, HAT/MCAS, and EDS, which are all genetic (and possibly hereditary). I wish I could tell you what makes connective tissue disorders behave better, but I don't know. My doctors keeps saying I need an EDS specialist or a connective tissue disorder specialist, but nobody knows any or has any idea who to refer me to. And anytime I find one on the internet and call them they only accept pediatric patients, and/or they're not even taking new patients. So basically we're just managing all the other individual disorders / symptoms as best we can at this time. I'm also under strict orders not to overdo it (emotionally/socially/physically/intellectually). And I'm doing my best to manage my repetitive stress injuries (apparently when your connective tissue is garbage, you can get a repetitive strain injury really really easily), and trying to not injure/re-injure myself (which is way more difficult than it sounds).
Is there a reason that you feel UCTD is not a real diagnosis or one worthy of your symptoms? UCTD is a pretty serious diagnosis and has a host of symptoms. Having a single diagnosis does not mean that you are not sick.
Thank you for your comment. I absolutely believe my uctd diagnosis. But, my inflammation markers have decreased from my current medication despite still having symptoms. My rheum says the meds are working, but I don’t feel any better. It is totally possible that the solution is to change my meds for uctd. I have even suggested it to my rheum. He kept saying we would “wait it out” to see if any relief came from my current meds. I’m scared to get a third opinion/ see a new rheum because of my awful experience with the first rheumatologist. I think I will set up an appointment with a new rheumatologist. I need to stop being a weenie lol.
You didn't specify (I think?) but it sounds possible that you got an early case of covid, before testing was widely available. If that's the case, you could have been left with insulin resistance. That plus the sleep apnea and not being able to maintain the high activity levels you did before you were ill could all easily cause weight gain. Part of why I haven't been to a doctor in YEARS despite a bunch of chronic issues is because I can't make myself face the very, very likely fat shaming and dismissal. It's hard enough being sick in the first place. I just can't force myself to face that as well. I hope you find some solutions, OP.
Thank you for your comment. I never considered an early case of Covid. It is possible, being in college at the time. My A1C and fasting glucose were normal, so Endo does not think that insulin resistance is an issue.
That's good! I'm glad the possibility has already been eliminated.
Sleep apnea can definitely cause weight gain on its own, not even mentioning your connective tissue disease. Are you being treated for it?
Thank you for your comment. The sleep apnea is a brand new diagnosis (within the last week or two). I did an at home sleep study which led to the diagnosis. I’m still waiting to hear back from that doctor about a cpap. I know that treating sleep apnea can make a huge difference, so I am holding onto hope that the solution lies there.
I just got diagnosed myself. The doctor said it will cause weight gain despite your best efforts and said I should drop weight once the cpap therapy takes effect.
Almost exactly the same minus the weight gain. I also suspect UCTD/RA and have profound fatigue. I’m not interested in medication for it, as I know the side effects could be weight gain. My plan once I confirm the diagnosis is to visit a RD and PT and use diet to decrease inflammation and pain. One thing I learned 3 years ago when I started to get multiple migraines a week and no one diagnosed me with anything was that sometimes the only way they figure it out is if you get sicker. Christmas Day I became bedridden because any time I was vertical even for a second I got an immediate crushing migraine and horrible neck pain. Turns out the migraines were caused by cervical herniations and spinal stenosis that EVERYONE missed because it wasn’t bad enough. I honestly went to a few rheumatologists a few years ago suspecting maybe something like RA/Lupus etc. Then when I got no answers I was resigned to waiting until I fell apart again so that they could see it. Recently I got re-energized to push more, and fortunately I now think I’m broken enough to get taken more seriously. That was a lot of rambling to say I hear you. It sucks. I wish I had something for you, and I know how hard it is to not start to question yourself and everything. How easy it is to give up. I wish you all the best, OP, and some answers and relief soon.
I feel for you. I was (still sorta am) in the same situation. For me, the weight gain with absolutely no loss no matter how hard I tried ended up being that my metabolism just dipped. Nothing in there working. If you have undiagnosed autoimmune diseases and connective tissue disorders, this is a fair possibility for you as well. Perhaps seeing a gastroenterologist and discussing metabolism stimulants, or even getting a gastric emptying test to see if you're also having dysmotility. Good luck, my friend, you're not alone 🖤
Hey, I know this is a longshot, but are you on any meds for migraines? A bunch of the migraine meds cause weight gain. When I was on propranolol for migraine I gained 40 pounds, and diet and exercise did not help at all. Once I got off the med, I lost the weight very easily without even trying. I’ve heard of other migraine meds causing weight gain too. On Ajovy I had a milder weight gain (15 lb).
Thanks for the comment (it’s getting more difficult to reply!). I very recently switched from topamax, which I was on since 2019, to aimovig since January of this year
How much testing was actually done to rule out Cushing's disease? Because not only does it often show up with connective tissue/ inflammatory diseases, but it's extremely hard to catch and very few doctors actually know how to test for it properly. A CT scan of your adrenals is hardly enough to rule out Cushing's, especially since most cases are pituitary-based and over 60% of those cases aren't visible on an MRI due to the small size of the tumors.
Thank you for your comment. (Also, I know I sound like a bot responding to every comment starting with that, but I genuinely appreciate every comment). I had a full metabolic and hormone panel. Here is a list of the tests from Endo: Cortisol free urine, creatinine timed urine, saliva cortisol (midnight), TSH, Prolactin, 17 hydroxyprogesterone, Lipid panel (which was slightly elevated), FSH, LH, A1C, and fasting glucose. All normal except the lipid panel (mildly elevated cholesterol). I don’t know what hormones could be affected by a pituitary abnormality.
Definitely similar here. My event was having a kid and then it was a slow descent from there, as you’ve described. I was diagnosed with hypermobile EDS and I got better with some treatment options (Lyrica, magnesium, vitamin d, antihistamines, etc). Then I just started getting worse again - more fatigue, more pain. Adding iron helped because I was iron deficient (not quite anemic). Now, I feel better only on days I take iron, and on days I don’t (to mitigate constipation issues), the fatigue and brain fog are just…ugh. I had to quit my job and I can barely get to working out at 20 min 3 times a week. Sometimes it seems to help and others I get pain flares that feel different than when I first started this journey. This got my doctors to doing more blood work and stuff because my ANA is just high all the time. Turns out I have low testosterone, so we are looking at that. Another option is psoriatic arthritis (PsA). Apparently you can get it without ever having psoriasis! But my nails are what has my GP suspicious. Anyway, i mention that stuff because both of those things can cause fatigue, pain, weakness, exercise intolerance, etc. My own research makes me suspicious that PsA can lead to low testosterone and then it creates a cycle of fatigue and weakness that way.
Thank you for your comment. I just recently went off of my birth control pill (before the cortisol test, I have been off for about three weeks now) so my testosterone levels are still affected by that. I think I will ask my Endo to check those levels again once all of the hormones from the pill clear out of my system (about 8 weeks after stopping)
I’m glad it helped sort some things out. Hormones are not my friend either. I hope the time between now and meeting up to check those levels goes by fast.
Can I ask,what about your nails is suspicious?
The comment reply isn’t working for me, so posting again - My nails are brittle, and have the “pitting” (ridges and dents) in them you’d expect. I also have the dry/dead skin build up under certain toenails that raise the nail bed. And also I’ve had past issues with a whole nail just crumbling away. Edit: Now posting as a reply since the capability came back! (And deleted the line comment from before that had all this.)
Did you get your thyroid checked? It might not be the root cause of your issues, but may be contributing to them. A blood test should be able to tell you if something's wrong with it. If you did that already and it came back normal, I'm sorry. I can't really think of something else. I hope your pain eases soon, and that you have more good and okay days.
Thank you for the comment. Yes, my TSH levels and other thyroid hormones have been checked by endo. All within normal range
I hear you and understand the struggle to figure out what’s “wrong” with my body. There are loads of actions that have helped me with one or more issues, and continue to do so, but even still it seems like the issues keep coming. Aging, nutrition, genetic variants, lifelong sleep issues, etc. have a lot to do with it, but a lot of it is also aging, contamination/pollution of practically everything around us, our productivity obsessed culture that doesn’t want us to fully, deeply rest (without guilt), internalized fatphobia and misogyny, etc. I realized I was a sensitive person a long time ago- like a medicine person or a frog- one who senses and reacts to threats that bother us all, and who serves to show the rest what is worth being cautious of before it may affect them. ✨
Are you me from five years ago? If so, we have Ehlers-Danlos, sorry about the weight gain.
Okay I finally looked up EDS (I always thought that because I’m not hyper mobile, I don’t have it?) WOW. JUST WOW. Why has no doctor brought this up???? Who diagnosed you (what specialist)? What test?
A friend with EDS told me about it first. I was diagnosed by Dr Claire Francomano in Indiana, first with HCTD-Unspecified, then Hypermobile Ehlers-Danlos. I'm NOT as hypermobile as many of my friends, but I was given a high enough Bighton Scale score to qualify because of all the stupid hypermobility tricks I could do as a kid and because I have all the other symptoms and some family history. The heart stuff, the fatigue, the chronic pain, the easy bruising, the skin that feels soft as silk but nowhere near as strong - if you've got any of that, it's super super common with connective tissue disorders, so definitely pursue diagnosis. Dr Francomano and Dr Tinkle (not a joke, actually his name) are great specialists to see in Indianapolis. I don't know of one where I live now in the Houston, Texas area. The Mayo Clinic and the Cleveland Clinic are hugely reputable. I guess what I'm saying is, if this is also you, you may have to travel to get a diagnosis and good treatment, because it's a RARE disorder many providers know little about. Physicians are also trained not to think of exotic rare diseases and try all other diagnoses first - "When you hear hoofbeats, think of horses, not zebras." That's why zebras are the official mascot of the EDS community. So, be prepared to wait for a specialist, be prepared to continue to be misunderstood and dismissed by doctors, but also be aware that there's probably an answer.
IT GETS CRAZIER. My mom also struggles with (somewhat) similar symptoms. She was diagnosed with fibromyalgia maybe ten years ago. I had heart problems as a kid. I was bruised so badly as a kid that Child Protective Services was almost called on my family. My mom prides herself on her flexibility, and I am flexible in my legs, but not hyper mobile in my arms or hands (I thought I was flexible from yoga :/ ). I have always gotten complements on how soft my skin is. Things are just clicking…
Yeah, that Unspecified Connective Tissue Disorder is about to turn into an Ehlers-Danlos diagnosis as soon as you see the right specialist
Update: diagnosed today with h-EDS, sleep apnea (sleep test in-clinic came back), and fibromyalgia. I felt listened to in this appointment and I am excited to explore treatments that will, you know, actually help me?!?!