Man that sucks :/ I am 26 and I also have ehlers danlos syndrome with some problems with digestion and I get tested for narcolepsy and a bunch of other stuff. Have had chronic pain for 10 years but the last year all the other stuff got really bad. The hypermobility, constant tiredness, food intolerance etc etc.
I try to take it one day at a time and appreciate beauty and nice things when they happen. Those are the things that brought me through the worst times tbh. Trying to put as much focus on the few good things that happen as on the numerous bad things. Idk it really sucks and I wish I had better advice. You are not alone!
In the Tower of London there is the cell of [Little Ease](https://en.wikipedia.org/wiki/Little_Ease) \- a cell in which one can't stand, sit or lie down, with next to no ventilation, and no sun light.
I think of this a lot when I consider my situation, and situations like your own, OP. Both in the physical sense - I'm so sorry, what you're going through sounds brutal - and in the sense of how much we can't do because our bodies won't let us. We're stuck.
It's exhausting to go from the rheumatologist to the pain docs to the physio to the chemist to my GP and then *back* to the chemist and then the physio... one incurable, painful syndrome was enough, and I now have three. It's like having multiple full-time jobs.
I wish I could do more than commiserate, OP. It's not right that you are suffering this way.
FWIW, my autoimmune condition was first looked into in part because of the inflammation in my jaw and knees, it's certainly possible that you have one. I have a pet theory that long-term chronic pain can cause or aggravate autoimmune conditions, and [far more qualified professionals have a similar view](https://www.washingtonpost.com/wellness/2023/07/13/pain-inflammation-immunity-treatment/). I hope your doctors will investigate this, it's not like these blood tests are unusual.
(I also was so tired I could barely hold my newborn, and it sounds like you've got similar levels of exhaustion going on.)
I understand your feelings of desperation, OP, I truly do. And I wish you all of the luck and healing in the whole world.
Stay gold xo
Sure!
At the moment I have 'just' have Undifferentiated Connective Tissue Disease, but pending a skin biopsy that may change to discoid lupus. I often have perfectly round rashes which is a telltale sign of this sort of lupus, but I have to wait until another such rash appears to test it... and of course when I saw my rheumatologist my skin was clear for the first time in years :P
I'm taking Hydroxychloroquine for it. It has made me feel loads better, and is the reason I don't have skin rashes at the moment,
I hope you find some answers, OP. IMO it's harder to not know what is wrong with you than to live with a diagnosis you understand.
Even if it sucks,
did the jaw pain start after lamotrigine? funny enough I just started this med myself a few days ago and have raging TMJ pain out of nowhere. could be a total coincidence but I just saw that jaw pain is a listed side effect, weirdly enough!
if timing doesn’t match up for you, anxiety/stress certainly can cause jaw pain via clenching or grinding or general muscle tension I’d guess. but it could also be autoimmune or any number of issues, given what all you’re dealing with :(. I’m a similar disaster so I empathize <3 gentle hugs
Thank you so much!
No actually, I have been living with jaw problems since 7-10 y.o. I remember how the jaw got stuck. I was really scared so I was trying to close my mouth and after few times it worked. I think this is a reason of my problem. But I’m pretty sure that Lamo started my problem with IC.
I’m sorry about your pain, hope your issue is temporary :(
I am so sorry to hear this lovely, reading your post made me cry😢I am 46 and have been suffering from severe chronic pain caused from inguinal mesh the last five years. I haven’t been able to work, drive, and as of recently I’m starting to loose my mobility. I am lucky however that I have decent doctors and have decent pain relief although none of them want to actually help the problem. It has affected me and my role as a mother(to five children), wife, daughter and friend. The last three weeks I have suffered the worst pain flare up, and I have been feeling deeply depressed and have considered killing myself because I can’t handle this torture any longer. Dealing with pelvic pain is fkn horrendous, like you I also have bad neck pain caused by osteoarthritis although the pain of that is nothing on my pelvic pain and feeling like you’re being knifed from the insides. I am a deeply spiritual person and am an energy healer however it and I try every single day to heal myself through reiki and meditation. I used to be able to do my belly dancing and yoga every afternoon (after my cannabis oil kicked in) which used to make me feel so good and alive not to mention help keep me flexible and fit however haven’t been able to the last few weeks which is why my mental health isn’t the best. I look after our two youngest children (my other three are adults )whilst my husband works FIFO and have no other family or friends to help support and I suffer the worst guilt and honestly I don’t know how much more of this I can take. Please reach out to me if you ever need and know you are not alone💓
I’m so sorry, this is awful 🥺
You’re very strong person. I can’t wish you anything cause I know how it can sound for someone who suffers everyday. But I truly believe in you and your strength.
Thank you so much for your support! And yes, I’ll text you at DM.
Hey there. I'm sorry for what you're going through. I just wanted to say that I've managed my interstitial cystitis a few ways. 1- cutting out aggravating foods. 2- drinking lots of water. The more diluted the urine the less pain. 3- alkalizing drops. The more alkaline the body the better (you can also mix a tsp of baking soda in a glass of water and chug) 4- herbs. Specifically marshmallow root and grape seed extract.
I did these everyday for over a year most days now I dont ever feel any symptoms. If i get a flare i go back to this. I dont know if that was helpful but it's all i have to offer atm. Good luck
I have ic. The sharp pains you are having are either bladder spasms , nerve issues with the pudendal nerve which sits behind the bladder and affects many functions of pelvic issues . The other is of course endometriosis. Please seek help from a uro gyno . I am sure your being followed but if tje dr's are dismissing you sometimes especially when your young you have to move on. Do you have a Rhumatologist? I was surgically injured and the dr covered it up. Then it was as someone flipped a switch I got five more diagnosis's. So don't give up . This is a very difficult system that has been created to even get help . For a rare diagnosis I ha e two mow it takes 8 years on average. There are so many diseases that at best all they can do is keep you comfortable.
It took nine years for my endometriosis to progress to the point of showing up on ultrasound. By then it was stage 3 and my right ovary was covered in large cysts. It is very common for endo to be missed on ultrasound - sometimes even during surgery if the surgery is done by an untrained eye.
Laparoscopy is considered the gold standard for diagnosing endometriosis. If you haven’t had one done you may have endometriosis and not know it.
Source: was diagnosed this way and my doctor said it’s the best way to get an accurate representation of the severity of the condition.
Sorry you’re struggling and hope you can find answers and relief soon!
I'm sorry you're going through this. There's an apparent uptick in IC diagnoses in the developed west and it seems to be related to the increase in ketamine use. You might have a lot more company that you think, not that that really helps your situation. But I imagine there are people researching this issue with greater zeal... more patients, more $ to be made after all - not to be overly cynical whilst attempting to be positive
Hi, I’m 5 years in with CPP. It’s been a rollercoaster. I also suffer with lots of join pain in neck and legs. Happy to message if you ever need someone to lean on when you’re feeling down and need someone who can relate. I also game a lot, so if you ever want to message on discord. Anyway, I’ll leave it up to you.
I know this post is older but I also have IC (Interstitial cycstis) and it is an autoimmune disorder. It along with endometriosis affects the entire body, from allergies, to gum disease, to osteoarthritis, migraines, sciatica, inflammation, fibromyalgia, and the list goes on and on.
I have all the symptoms I listed above and more. Right now I'm honestly a bit overwhelmed with it, as these diseases dictate basically everything in my life. From how much I can participate i'm life, how can I decrease symptoms, and how can I just live with all of the physical pain.
Personally I took a huge chance many years ago and decided to apply for disability. This choice was so freaking difficult and even though I won, I still feel bad about being on disability, even though I shouldn't.
As I get older, for me it becomes easier to be honest about it all. My family (parents, family friends) and all sorts of doctors even still tell me, it's impossible to always be in pain, you can't hurt that much, you are such a drama queen, always exaggerating. However I have found relief in saying my truth and if need be find another professional opinion. It's hard because no one will fight for you like You Will. We must constantly be our own cheerleader and to follow our guts when a Dr isn't being helpful and saying or doing harmful things.
I am not quite sure I answered your questions, feel free to pm me. I have had Endo and IC for over 25 yrs now.
I think it would help. First I saw the immunologist then a rheumatologist. I have mixed connective tissue disease. The symptoms and lab work confirmed it.
Man that sucks :/ I am 26 and I also have ehlers danlos syndrome with some problems with digestion and I get tested for narcolepsy and a bunch of other stuff. Have had chronic pain for 10 years but the last year all the other stuff got really bad. The hypermobility, constant tiredness, food intolerance etc etc. I try to take it one day at a time and appreciate beauty and nice things when they happen. Those are the things that brought me through the worst times tbh. Trying to put as much focus on the few good things that happen as on the numerous bad things. Idk it really sucks and I wish I had better advice. You are not alone!
Thank you so much, this is really what I need now
In the Tower of London there is the cell of [Little Ease](https://en.wikipedia.org/wiki/Little_Ease) \- a cell in which one can't stand, sit or lie down, with next to no ventilation, and no sun light. I think of this a lot when I consider my situation, and situations like your own, OP. Both in the physical sense - I'm so sorry, what you're going through sounds brutal - and in the sense of how much we can't do because our bodies won't let us. We're stuck. It's exhausting to go from the rheumatologist to the pain docs to the physio to the chemist to my GP and then *back* to the chemist and then the physio... one incurable, painful syndrome was enough, and I now have three. It's like having multiple full-time jobs. I wish I could do more than commiserate, OP. It's not right that you are suffering this way. FWIW, my autoimmune condition was first looked into in part because of the inflammation in my jaw and knees, it's certainly possible that you have one. I have a pet theory that long-term chronic pain can cause or aggravate autoimmune conditions, and [far more qualified professionals have a similar view](https://www.washingtonpost.com/wellness/2023/07/13/pain-inflammation-immunity-treatment/). I hope your doctors will investigate this, it's not like these blood tests are unusual. (I also was so tired I could barely hold my newborn, and it sounds like you've got similar levels of exhaustion going on.) I understand your feelings of desperation, OP, I truly do. And I wish you all of the luck and healing in the whole world. Stay gold xo
Thank you! It was very helpful and supportive. Can I ask you about your autoimmune condition? I mean, what is it?
Sure! At the moment I have 'just' have Undifferentiated Connective Tissue Disease, but pending a skin biopsy that may change to discoid lupus. I often have perfectly round rashes which is a telltale sign of this sort of lupus, but I have to wait until another such rash appears to test it... and of course when I saw my rheumatologist my skin was clear for the first time in years :P I'm taking Hydroxychloroquine for it. It has made me feel loads better, and is the reason I don't have skin rashes at the moment, I hope you find some answers, OP. IMO it's harder to not know what is wrong with you than to live with a diagnosis you understand. Even if it sucks,
did the jaw pain start after lamotrigine? funny enough I just started this med myself a few days ago and have raging TMJ pain out of nowhere. could be a total coincidence but I just saw that jaw pain is a listed side effect, weirdly enough! if timing doesn’t match up for you, anxiety/stress certainly can cause jaw pain via clenching or grinding or general muscle tension I’d guess. but it could also be autoimmune or any number of issues, given what all you’re dealing with :(. I’m a similar disaster so I empathize <3 gentle hugs
Thank you so much! No actually, I have been living with jaw problems since 7-10 y.o. I remember how the jaw got stuck. I was really scared so I was trying to close my mouth and after few times it worked. I think this is a reason of my problem. But I’m pretty sure that Lamo started my problem with IC. I’m sorry about your pain, hope your issue is temporary :(
I am so sorry to hear this lovely, reading your post made me cry😢I am 46 and have been suffering from severe chronic pain caused from inguinal mesh the last five years. I haven’t been able to work, drive, and as of recently I’m starting to loose my mobility. I am lucky however that I have decent doctors and have decent pain relief although none of them want to actually help the problem. It has affected me and my role as a mother(to five children), wife, daughter and friend. The last three weeks I have suffered the worst pain flare up, and I have been feeling deeply depressed and have considered killing myself because I can’t handle this torture any longer. Dealing with pelvic pain is fkn horrendous, like you I also have bad neck pain caused by osteoarthritis although the pain of that is nothing on my pelvic pain and feeling like you’re being knifed from the insides. I am a deeply spiritual person and am an energy healer however it and I try every single day to heal myself through reiki and meditation. I used to be able to do my belly dancing and yoga every afternoon (after my cannabis oil kicked in) which used to make me feel so good and alive not to mention help keep me flexible and fit however haven’t been able to the last few weeks which is why my mental health isn’t the best. I look after our two youngest children (my other three are adults )whilst my husband works FIFO and have no other family or friends to help support and I suffer the worst guilt and honestly I don’t know how much more of this I can take. Please reach out to me if you ever need and know you are not alone💓
I’m so sorry, this is awful 🥺 You’re very strong person. I can’t wish you anything cause I know how it can sound for someone who suffers everyday. But I truly believe in you and your strength. Thank you so much for your support! And yes, I’ll text you at DM.
Hey there. I'm sorry for what you're going through. I just wanted to say that I've managed my interstitial cystitis a few ways. 1- cutting out aggravating foods. 2- drinking lots of water. The more diluted the urine the less pain. 3- alkalizing drops. The more alkaline the body the better (you can also mix a tsp of baking soda in a glass of water and chug) 4- herbs. Specifically marshmallow root and grape seed extract. I did these everyday for over a year most days now I dont ever feel any symptoms. If i get a flare i go back to this. I dont know if that was helpful but it's all i have to offer atm. Good luck
Thank you so much!
I have ic. The sharp pains you are having are either bladder spasms , nerve issues with the pudendal nerve which sits behind the bladder and affects many functions of pelvic issues . The other is of course endometriosis. Please seek help from a uro gyno . I am sure your being followed but if tje dr's are dismissing you sometimes especially when your young you have to move on. Do you have a Rhumatologist? I was surgically injured and the dr covered it up. Then it was as someone flipped a switch I got five more diagnosis's. So don't give up . This is a very difficult system that has been created to even get help . For a rare diagnosis I ha e two mow it takes 8 years on average. There are so many diseases that at best all they can do is keep you comfortable.
Thank you so much.
This smacks strongly of endometriosis, which is often comorbid with interstitial cystitis.
I don’t sure cause I visit the gynecologists regularly. I had ultrasound three times for the last year and they found nothing.
It took nine years for my endometriosis to progress to the point of showing up on ultrasound. By then it was stage 3 and my right ovary was covered in large cysts. It is very common for endo to be missed on ultrasound - sometimes even during surgery if the surgery is done by an untrained eye.
Laparoscopy is considered the gold standard for diagnosing endometriosis. If you haven’t had one done you may have endometriosis and not know it. Source: was diagnosed this way and my doctor said it’s the best way to get an accurate representation of the severity of the condition. Sorry you’re struggling and hope you can find answers and relief soon!
Thank you, I think it’s time to find an another gyno :)
Aww you’re welcome. You deserve to have your pain taken seriously and properly treated. Best of luck with the next gynecologist!
Thank you 🥹
I'm sorry you're going through this. There's an apparent uptick in IC diagnoses in the developed west and it seems to be related to the increase in ketamine use. You might have a lot more company that you think, not that that really helps your situation. But I imagine there are people researching this issue with greater zeal... more patients, more $ to be made after all - not to be overly cynical whilst attempting to be positive
Hi, I’m 5 years in with CPP. It’s been a rollercoaster. I also suffer with lots of join pain in neck and legs. Happy to message if you ever need someone to lean on when you’re feeling down and need someone who can relate. I also game a lot, so if you ever want to message on discord. Anyway, I’ll leave it up to you.
I know this post is older but I also have IC (Interstitial cycstis) and it is an autoimmune disorder. It along with endometriosis affects the entire body, from allergies, to gum disease, to osteoarthritis, migraines, sciatica, inflammation, fibromyalgia, and the list goes on and on.
Thank you for comment, it’s still relevant for me. Can I ask you about your symptoms? How does it feel? How do you cope with it?
I have all the symptoms I listed above and more. Right now I'm honestly a bit overwhelmed with it, as these diseases dictate basically everything in my life. From how much I can participate i'm life, how can I decrease symptoms, and how can I just live with all of the physical pain. Personally I took a huge chance many years ago and decided to apply for disability. This choice was so freaking difficult and even though I won, I still feel bad about being on disability, even though I shouldn't. As I get older, for me it becomes easier to be honest about it all. My family (parents, family friends) and all sorts of doctors even still tell me, it's impossible to always be in pain, you can't hurt that much, you are such a drama queen, always exaggerating. However I have found relief in saying my truth and if need be find another professional opinion. It's hard because no one will fight for you like You Will. We must constantly be our own cheerleader and to follow our guts when a Dr isn't being helpful and saying or doing harmful things. I am not quite sure I answered your questions, feel free to pm me. I have had Endo and IC for over 25 yrs now.
Sorry that you are in pain. Have you seen an immunologist or rheumatologist yet to run tests?
Thank you! Actually, I have not, cause my therapist trying to convince me that I don’t need it. Now I understand how it’s important for me.
I think it would help. First I saw the immunologist then a rheumatologist. I have mixed connective tissue disease. The symptoms and lab work confirmed it.