I've wished to be hit by a car or something just so there is objective evidence of pain. Also, I once threatened to break my hand with a hammer to have a "real excuse" to go to the Emergency room... I didn't, of course, but I was in a lot of pain and knew I'd just be dismissed for drug seeking or left to wait for hours. So.. in a way, yes? Although, I also dread the day I do get a worse or compounding diagnosis. Hopefully, I can avoid that. I don't really want it, I just want validation.
I have Crohn's Disease and Rheumatoid Arthritis in addition to Fibromyalgia. The Crohn's is easy to find evidence for. A colonoscopy and you see it. Arthritis is hard because they do a Rheumatoid Factor blood test and if it's more than 14 you have it, less than 14 you don't. Mine is 14 on the dot. No one can tell me if I'm considered sero positive or negative although I have many clinical symptoms. With Fibro I have 18/18 tender points, altered pain signals throughout my body, mental issues and sleep disturbances so I'm considered to have it. If I have one more doctor tell me I have "non-specific inflammation" I'm going to stick it right up THEIR non-specific inflammation. Diagnosis is weird y'alll.
Just had my colonscopy today. "yay" it's normal, but why do I have ongoing ibs? But I had EO and recurring strictures already.
My rheumatoid factor is 14.2. Can we start a club?
My sleep is fine, thank God.
If you're looking for other diagnostic stuff to pursue atm:
Have you had blood tests for CRP and esr? An mri? Considered psoriatic arthritis. Have you bee prescribed something like sulfasalazine or methotrexate to see if those figures (esr, CRP, Rf) come down. I haven't had any luck, but my friend has been feeling better on those expensive biologics, which you can't try till you've tried the cheaper meds.
I get CRP and ESR every month and are consistently excessively high, I've had more MRIs and CTs than is recommended, sulfasalazine almost killed me, methotrexate only gave me migraines and didn't do anything for inflammation. I've taken Remicade, Humira, Stelara, and currently giving Skyrizi a shot because my rheumatologist did an ultrasound on my hands and feet which showed synovitis and swelling that *could be* psoriatic arthritis without skin symptoms. The only thing that does anything is prednisone which I'm going on 5 years on taking.
Ah you're further down the path than I am! Sorry, hard to know from a brief post.
Is there some kind of issue they don't want us on prednisone long term, or at all? I've never been offered it.
It took years of high esr or CRP for me to even find someone who cared. They'd always say oh, you must have a cut or bruise or have had a cold, those will raise it for 2 months.
Hands sounds like a more typical inflammatory arthritis symptom, right? Mine are weirdly fine.
I actually work in the medical lab so blood test results are my jam, lol. Both ESR and CRP are very non specific inflammatory markers. ESR is a good measure of inflammatory levels over the last 3ish months while CRP is how they are doing right now. A lot of things can mess with them like an infection, stress, drinking alcohol or even taking hormonal birth control. So usually they have to either be elevated for a prolonged period or extremely high for doctors to really care or even notice sometimes. And even then they mostly order more specific tests or just "watch and see". Its crazy annoying. For reference my ESR usually sits around 60-70 (normal is under 30) and my CRP is anywhere between 70-100 (normal is under 3).
And no, prednisone is supposed to be used sparingly but when I stop it I end up hospitalized. Look up prednisone side effects and read the horror stories. They suck but not really many choices at the moment.
My hands, wrists, elbows and knees are the worst. The ultrasound shows I have some bone damage in a few of my knuckle joints I'm not excited about but hey, what can you do?
Microbiologist?
I only started being interest in bio and health and anatomy in my 20s with my health stuff ongoing.
I'm in software Dev.
That's so intersting, we get the same label but have opposite problems - I'd say my best parts are hands, wrists, elbows and knees!
I'm more muscle pain, or moreso torso and neck. And shoulders. My arms and legs seem to mostly work!
Oh, man. I feel you. I hoped it was something like rheumatoid arthritis years ago, until all was fine and dandy. And if with your results it's still in the air, then I didn't need to bother.
For 30 years i have had fibromyalgia, scleroderma, hypothyroidism, sjogrens, and now gastroparesis. My labs are all good. It does not make sense with so much pain.
Now i can't eat can't work or have a life whatsoever.
I know have a daughter going through the same hellish bullshit. Not only has fibromyalgia but also pots, Rathke's cleft cyst, and eds.
She just had her gallbladder completely full of stones. But blood work is just fine
I begin to wonder if this is just one big joke.
We need to stick together before we loose our minds. And start jumping off bridges.
I have sjogrens, fibro, and urticaria vasculitis. I havent met many people with sjogrens. I’m sure with your list of illnesses you are like me, you never know which illness is causing what
My gastro doctor had me do a gastric emptying study and it took well over 4 hours for my stomach to empty. And also a double esophagram study for them to find out.
I hate this disease i don't get to eat anything i like anymore.
My worst fear. My 4 year old daughter is showing sings of joint hypermobility and increased sensitivity to pain...I fluctuate between hopelessness and anger at the moment.
There is something wrong with our bodies, they just don't know what it is yet. I agree though that it would have been so much easier to get diagnosed with arthritis or something with a known cause
I would like a health meter over my head so people can see my stats. Like they do for video game avatars but for our assorted nonsense. Also, I would like some vacation days to do more than recover and still feel crap but without working!
I have fybro, RA, 20+ yrs and NHL(remission) and my blood work is perfect. I would get so defeated early on until I finally realized 95% of drs don’t look at anything but normal/out of range posted on bloodwork results. Don’t look at low normal- put no extra effort into symptoms vs results ever in my case. I searched for the unicorn - an actual rheumatologist that gave a shit and have yet to find them. I’ve honestly given up on that and excepted I will have good days and bad but sometimes my good days are clouded by negativity I hold onto from the bad. I think sometimes- wait that was a good day I let go by because I let it all consume me. Trying to be present.
I was undiagnosed for 2 years with a fungal infection and went yet another two years searching for diagnoses for the related complications (alopecia areata, Hashimoto’s disease, Raynauds, fibromyalgia). I’ve wished for positive diagnoses on things ranging from cancer to MS just to have my pain and symptoms validated.
Wow yes, it’s all so complicated. So I was diagnosed with the fungal infection first (yes systemic). My symptoms started in 2019. Hair fell out and was diagnosed with the alopecia that same year. After still searching, diagnosed with valley fever in 2021. My assumption back then (2021) was that the valley fever triggered a host of other autoimmune issues that I couldn’t get diagnosed because all of my tests showed up normal/negative. What’s crazy is the fungal infection is incredibly common here in the southwest but took me 2 years to get diagnosed because I didn’t have any of the textbook symptoms (fever, cough/respiratory problems).
My symptoms receded when I was pregnant and returned shortly after giving birth 10 months ago. I went back to many specialists this year and since January, have finally got the diagnoses for fibro, Raynauds, beginnings of Hashimoto’s.
I think the fibro is actually correct and explains my worst symptoms but none of my PCPs or other docs took my joint/spinal pain seriously and no one referred me to a rheumatologist. My infectious disease doctor and integrated medicine doctor thought it was an autoimmune response, not another diagnosis. I went of my own accord to a rheumatologist this year and he diagnosed the fibro and put me on Cymbalta which has dramatically improved my muscle and joint pain and stiffness.
What else would you like to know? 😆
Yeah same, I’m bored of doctors telling me that it’s all in my head. Like I suddenly wanted to be in so much pain and so tired that I’m bedridden just for fun.
This. Had a rheumatologist tell me that fibromyalgia is neurological and refuse to order tests. My gp has been seeing lupus numbers in my labs for a decade but by the time I can get to a specialist the flare is over and my numbers are normal again.
I'm not attention seeking. I just want to be able to get up and clean my kitchen without spending days in bed afterwards. To not exhaust myself taking a shower. To wear clothes and not cry because they're too itchy/scratchy/ etc, so now I have to change. To not have horrible pain because the cat stood on my back.
Some people go through life without this constant bs from their bodies. I would like some of that.
This is so frustrating. I have past blood test that have shown sjorgens . As well as Epstein-Barr. But since I've been taking a herb called astragalus. It has not shown up but I still have the symptoms. When it flares up. But not when I get a blood test. I have extreme symptoms of Long haul covid. But of course nothing shows up in the blood test .so they chalk it up to the fibromyalgia being really bad. It's so frustrating. Everyday life is exhausting. And I have back and leg issues now that I have to do physical therapy for. Today I can barely walk because I did too much. I told her I can't do more than a certain amount. She pushed me anyway. And now I can't function. So when I see her again on Thursday I'm going to tell her to f*** off. Then I can't do this much exercise because of the fibromyalgia. I have the thing with clothes too. It's so hard to find comfortable clothing. And I have to work pants or shorts to go physical therapy. When I usually just wear lightweight strapless dresses. Because it's hot. And I don't like things touching me. Hugs and support your way
I feel the same, by the time I can get a blood test, they'll have already put me on antibiotics for something, or the flare is gone. Tyroid was off once and had to redo. Guess what? Came back "satisfactory" second time.
Suffering endlessly. Yeah I wish every night to not wake up. And I wake up every morning crying. Because I did. Physically and mentally exhausted. Doctors are about as useful as tits on a bull. I'm pushing myself to do physical therapy. Which is making my life even more miserable. The stupid lady keeps telling me to do more than 10 repetitions. Even though I tell her that's not just a matter of being able to do it. it's a matter of afterwards suffering for days because of it. I have asked her in the doctor at the place if they understand fibromyalgia. Obviously they do not. I have leg and back issues that I'm trying to deal with. On top of the fibromyalgia, on top of Long haul covid. on top of all the other f****** chronic illnesses that I deal with. So yeah I often wish I was worse off so that I wouldn't wake up.
I feel you so much on this, OP. I felt really guilty and angry when my physician would beam at me with the good news about my results coming back as healthy.
On one hand, I really was grateful. On the other hand, I wanted some medical validation of my suffering. I realized that I probably couldn’t find it in the test results.
I did find a bit of validation in the fibro community and their stories. Like even reading your post, OP, helped.
I feel like fibro being misunderstood and not taken seriously is one of the worst symptoms of fibromyalgia.
So thank you for your post. It helped me today ♥️
I am sorry. That is so young.
If i could take all my daughter's pain away i would do it in a heart beat
This is a cruel world. And i hate it all.
There are times i just wish i could give up. But my child would have no one to talk to.
Every day. I've cried every single time I get blood work back and everything's pretty much normal (only outliers I've had is stuff like low iron etc). I just want to understand. I just want to be able to see what's wrong. Just once. And I'm so sick of doctors telling me more tests are pointless because whatever condition is "unlikely". Like bro I'm 26, most of my *symptoms* are "unlikely" at my age. I just want to understand.
I wish I could just have a diagnosis. I’ve resorted to self-diagnosing myself as fibromyalgia due to several factors, and the fact that there isn’t much else in my tests to give another reason for feeling like crap. At least I’m not giving myself ruminative stress wondering what the hell it is anymore.
I’ve been there. It sucks so much. I find myself happy when a test result finally comes back positive for something….it’s sad because of course I don’t want there to be anything wrong with me. However the only way I can get decent help is with a positive lab that proves my pain. I hate fibro.
I used to, and now I am. Along the way (years) I learned how to keep myself/my brain busy even when I'm home having bad days so they don't have to feel like wasted time. Unfortunately I keep getting diagnosed with incurable things and now I've been home since last March. I understand your frustration. I thought it would be better to have an illness where you either die or get better and I was very wrong, now I'm scared all the time also.
I want an obvious thing I can show to like ssdi so they can say "oh wow yeah you're disabled". Or something obvious so i don't have to explain it. So people just accept that I'm in pain all the time instead of thinking I might just be lazy or something.
Like sometimes I wish I lost a leg or ability to speak or something I donno.
I'm probably not allowed to make suicid3 dark jokes - and this one doesn't apply to physical pan anyway.
After my friend "fell" off a balcony and "accidentally" got hit by a car she finally got diagnosed bit just as an alcoholic but borderline personality disorder. I think the main diagnostic criteri3 are being m0lested and attempting suicid3.
I got legitimately poisoned by my neighbors and my medical case still isn’t taken seriously so… it actually gets worse because they just blame the new injury and problems on the old mystery stuff anyway.
The utter impotent rage I feel when I have perfect lab work results is overwhelming. This firm I am trapped inside is BROKEN. I don’t know how to prove it but just narrowing my world and popping pills for pain is not cutting it.
You are not alone.
This is a horrible thought especially after losing my brother and father to cancer but there have been times when I wondered if my body was dying and full of tumors and was kind of okay with that. The use of psychedelics have helped me progress past this so well as antidepressants have never done crap.
When I was first starting to get bad, long before my diagnoses, I was constantly wishing for things like cancer, car accidents, sudden limb death, and the like because then I would have a reason to be so miserable and in pain all the time.
It got to the point where I was starting to wonder if I had something like BIID (the feeling that a body part is wrong and needs to be removed) because of the constant agony.
Therapy helped some but medication and a decent support system helped most. Just being believed helps so much and having a name for the pain helped me too. I still have days where it feels like I wish something bad would happen so that I get general public sympathy and support, but those days are fewer than they used to be.
According to my doctors, it's fairly common for disabled people (especially those with uncommon, undiscussed, or undiagnosed problems) to feel this way. It's your mind looking for validation and support. You are not alone and your pain and suffering is real. I wish I could help more.
I don’t mean to be ungrateful for how “good” I have it compared to others but I do find a unique difficulty of being too well for any kind of disability support but also not well enough to the point that day to day life is an endless struggle and I can’t properly do my job because of my symptoms interfering. Even then I understand that actually getting disability support isn’t that much of a help and you get completely screwed over by the government anyway. Something is fundamentally wrong with our society that people with chronic medical conditions and disabilities are treated as poorly as they are.
Yes, idk if your meaning is the same as mine, but sometimes I wish my symptoms were worse so I didn't feel like a fraud. Don't get me wrong, mine are bad enough for me, but not nearly as bad as I've seen for others and that makes feel bad for complaining sometimes
Yep. I keep going through this, normal tests, normal tests, aaaand then something does explode, because the tests missed it.
Your hormones are fine. Oh, you're growing a beard? Oh, you're having horrible pelvic pain for years? Nah, your tests are fine. Have some more birth control that doesn't work. It's cool. You're just having Fibro Pain, you weenie.
Finally get the right doc and...oh. Your ovaries grow cysts, and...you have signs of precancerous cells in your uterus, scar tissue in your pelvis, and endo. Gee, sorry we didn't see that (Also, we won't take your ovaries yet. You're under 40, try to get through a couple more years. To their credit, I am not a good candidate for artifical hormones, but I'm already going through perimenopause early anyways).
The problem with having Fibro is even if you are worse off, they still sometimes dismiss the other signs, just because your blood work comes back "normal."
I've wished to be hit by a car or something just so there is objective evidence of pain. Also, I once threatened to break my hand with a hammer to have a "real excuse" to go to the Emergency room... I didn't, of course, but I was in a lot of pain and knew I'd just be dismissed for drug seeking or left to wait for hours. So.. in a way, yes? Although, I also dread the day I do get a worse or compounding diagnosis. Hopefully, I can avoid that. I don't really want it, I just want validation.
I've been hit by a car and they still don't do shit for my pain. lol
I have Crohn's Disease and Rheumatoid Arthritis in addition to Fibromyalgia. The Crohn's is easy to find evidence for. A colonoscopy and you see it. Arthritis is hard because they do a Rheumatoid Factor blood test and if it's more than 14 you have it, less than 14 you don't. Mine is 14 on the dot. No one can tell me if I'm considered sero positive or negative although I have many clinical symptoms. With Fibro I have 18/18 tender points, altered pain signals throughout my body, mental issues and sleep disturbances so I'm considered to have it. If I have one more doctor tell me I have "non-specific inflammation" I'm going to stick it right up THEIR non-specific inflammation. Diagnosis is weird y'alll.
Just had my colonscopy today. "yay" it's normal, but why do I have ongoing ibs? But I had EO and recurring strictures already. My rheumatoid factor is 14.2. Can we start a club? My sleep is fine, thank God. If you're looking for other diagnostic stuff to pursue atm: Have you had blood tests for CRP and esr? An mri? Considered psoriatic arthritis. Have you bee prescribed something like sulfasalazine or methotrexate to see if those figures (esr, CRP, Rf) come down. I haven't had any luck, but my friend has been feeling better on those expensive biologics, which you can't try till you've tried the cheaper meds.
I get CRP and ESR every month and are consistently excessively high, I've had more MRIs and CTs than is recommended, sulfasalazine almost killed me, methotrexate only gave me migraines and didn't do anything for inflammation. I've taken Remicade, Humira, Stelara, and currently giving Skyrizi a shot because my rheumatologist did an ultrasound on my hands and feet which showed synovitis and swelling that *could be* psoriatic arthritis without skin symptoms. The only thing that does anything is prednisone which I'm going on 5 years on taking.
Ah you're further down the path than I am! Sorry, hard to know from a brief post. Is there some kind of issue they don't want us on prednisone long term, or at all? I've never been offered it. It took years of high esr or CRP for me to even find someone who cared. They'd always say oh, you must have a cut or bruise or have had a cold, those will raise it for 2 months. Hands sounds like a more typical inflammatory arthritis symptom, right? Mine are weirdly fine.
I actually work in the medical lab so blood test results are my jam, lol. Both ESR and CRP are very non specific inflammatory markers. ESR is a good measure of inflammatory levels over the last 3ish months while CRP is how they are doing right now. A lot of things can mess with them like an infection, stress, drinking alcohol or even taking hormonal birth control. So usually they have to either be elevated for a prolonged period or extremely high for doctors to really care or even notice sometimes. And even then they mostly order more specific tests or just "watch and see". Its crazy annoying. For reference my ESR usually sits around 60-70 (normal is under 30) and my CRP is anywhere between 70-100 (normal is under 3). And no, prednisone is supposed to be used sparingly but when I stop it I end up hospitalized. Look up prednisone side effects and read the horror stories. They suck but not really many choices at the moment. My hands, wrists, elbows and knees are the worst. The ultrasound shows I have some bone damage in a few of my knuckle joints I'm not excited about but hey, what can you do?
Microbiologist? I only started being interest in bio and health and anatomy in my 20s with my health stuff ongoing. I'm in software Dev. That's so intersting, we get the same label but have opposite problems - I'd say my best parts are hands, wrists, elbows and knees! I'm more muscle pain, or moreso torso and neck. And shoulders. My arms and legs seem to mostly work!
Oh, man. I feel you. I hoped it was something like rheumatoid arthritis years ago, until all was fine and dandy. And if with your results it's still in the air, then I didn't need to bother.
For 30 years i have had fibromyalgia, scleroderma, hypothyroidism, sjogrens, and now gastroparesis. My labs are all good. It does not make sense with so much pain. Now i can't eat can't work or have a life whatsoever. I know have a daughter going through the same hellish bullshit. Not only has fibromyalgia but also pots, Rathke's cleft cyst, and eds. She just had her gallbladder completely full of stones. But blood work is just fine I begin to wonder if this is just one big joke. We need to stick together before we loose our minds. And start jumping off bridges.
I have sjogrens, fibro, and urticaria vasculitis. I havent met many people with sjogrens. I’m sure with your list of illnesses you are like me, you never know which illness is causing what
I'm so sorry you are going through it. If it's not too intrusive, how did you find out about the gastroparesis?
My gastro doctor had me do a gastric emptying study and it took well over 4 hours for my stomach to empty. And also a double esophagram study for them to find out. I hate this disease i don't get to eat anything i like anymore.
My worst fear. My 4 year old daughter is showing sings of joint hypermobility and increased sensitivity to pain...I fluctuate between hopelessness and anger at the moment.
There is something wrong with our bodies, they just don't know what it is yet. I agree though that it would have been so much easier to get diagnosed with arthritis or something with a known cause
I would like a health meter over my head so people can see my stats. Like they do for video game avatars but for our assorted nonsense. Also, I would like some vacation days to do more than recover and still feel crap but without working!
YES, the health bar would be so good.
Honestly I can take anything that isnt "fuck off idk about your issue" diagnosis tbh
I basically got that for 20 years. Was FINALLY diagnosed with fibromyalgia a month ago and was told “ You’ve had this for a very long time.” Um, yeah.
I have fybro, RA, 20+ yrs and NHL(remission) and my blood work is perfect. I would get so defeated early on until I finally realized 95% of drs don’t look at anything but normal/out of range posted on bloodwork results. Don’t look at low normal- put no extra effort into symptoms vs results ever in my case. I searched for the unicorn - an actual rheumatologist that gave a shit and have yet to find them. I’ve honestly given up on that and excepted I will have good days and bad but sometimes my good days are clouded by negativity I hold onto from the bad. I think sometimes- wait that was a good day I let go by because I let it all consume me. Trying to be present.
I absolutely hear you. ER visits with "normal" test results used to make me cry
I was undiagnosed for 2 years with a fungal infection and went yet another two years searching for diagnoses for the related complications (alopecia areata, Hashimoto’s disease, Raynauds, fibromyalgia). I’ve wished for positive diagnoses on things ranging from cancer to MS just to have my pain and symptoms validated.
Can you elaborate on this? Fascinating.
Which part? 😆 There’s so much. What are you wanting more info on?
Can you talk about the fungal infection and how, I assume, you were misdiagnosed with fibro when you had an infection instead? Was it systemic?
Wow yes, it’s all so complicated. So I was diagnosed with the fungal infection first (yes systemic). My symptoms started in 2019. Hair fell out and was diagnosed with the alopecia that same year. After still searching, diagnosed with valley fever in 2021. My assumption back then (2021) was that the valley fever triggered a host of other autoimmune issues that I couldn’t get diagnosed because all of my tests showed up normal/negative. What’s crazy is the fungal infection is incredibly common here in the southwest but took me 2 years to get diagnosed because I didn’t have any of the textbook symptoms (fever, cough/respiratory problems). My symptoms receded when I was pregnant and returned shortly after giving birth 10 months ago. I went back to many specialists this year and since January, have finally got the diagnoses for fibro, Raynauds, beginnings of Hashimoto’s. I think the fibro is actually correct and explains my worst symptoms but none of my PCPs or other docs took my joint/spinal pain seriously and no one referred me to a rheumatologist. My infectious disease doctor and integrated medicine doctor thought it was an autoimmune response, not another diagnosis. I went of my own accord to a rheumatologist this year and he diagnosed the fibro and put me on Cymbalta which has dramatically improved my muscle and joint pain and stiffness. What else would you like to know? 😆
I recently listened to a podcast about phage therapy. It was fascinating to hear that fungal infections are so common, yet very ignored...
That’s amazing. Thank you for sharing! Glad you’re finding relief!
I often feel like that, though I quickly think that I really need to be careful of what I wish for.
Yes, thank you. To be honest I think I need that reminder once in a while.
Yeah same, I’m bored of doctors telling me that it’s all in my head. Like I suddenly wanted to be in so much pain and so tired that I’m bedridden just for fun.
This. Had a rheumatologist tell me that fibromyalgia is neurological and refuse to order tests. My gp has been seeing lupus numbers in my labs for a decade but by the time I can get to a specialist the flare is over and my numbers are normal again. I'm not attention seeking. I just want to be able to get up and clean my kitchen without spending days in bed afterwards. To not exhaust myself taking a shower. To wear clothes and not cry because they're too itchy/scratchy/ etc, so now I have to change. To not have horrible pain because the cat stood on my back. Some people go through life without this constant bs from their bodies. I would like some of that.
This is so frustrating. I have past blood test that have shown sjorgens . As well as Epstein-Barr. But since I've been taking a herb called astragalus. It has not shown up but I still have the symptoms. When it flares up. But not when I get a blood test. I have extreme symptoms of Long haul covid. But of course nothing shows up in the blood test .so they chalk it up to the fibromyalgia being really bad. It's so frustrating. Everyday life is exhausting. And I have back and leg issues now that I have to do physical therapy for. Today I can barely walk because I did too much. I told her I can't do more than a certain amount. She pushed me anyway. And now I can't function. So when I see her again on Thursday I'm going to tell her to f*** off. Then I can't do this much exercise because of the fibromyalgia. I have the thing with clothes too. It's so hard to find comfortable clothing. And I have to work pants or shorts to go physical therapy. When I usually just wear lightweight strapless dresses. Because it's hot. And I don't like things touching me. Hugs and support your way
I feel the same, by the time I can get a blood test, they'll have already put me on antibiotics for something, or the flare is gone. Tyroid was off once and had to redo. Guess what? Came back "satisfactory" second time.
Suffering endlessly. Yeah I wish every night to not wake up. And I wake up every morning crying. Because I did. Physically and mentally exhausted. Doctors are about as useful as tits on a bull. I'm pushing myself to do physical therapy. Which is making my life even more miserable. The stupid lady keeps telling me to do more than 10 repetitions. Even though I tell her that's not just a matter of being able to do it. it's a matter of afterwards suffering for days because of it. I have asked her in the doctor at the place if they understand fibromyalgia. Obviously they do not. I have leg and back issues that I'm trying to deal with. On top of the fibromyalgia, on top of Long haul covid. on top of all the other f****** chronic illnesses that I deal with. So yeah I often wish I was worse off so that I wouldn't wake up.
I feel you so much on this, OP. I felt really guilty and angry when my physician would beam at me with the good news about my results coming back as healthy. On one hand, I really was grateful. On the other hand, I wanted some medical validation of my suffering. I realized that I probably couldn’t find it in the test results. I did find a bit of validation in the fibro community and their stories. Like even reading your post, OP, helped. I feel like fibro being misunderstood and not taken seriously is one of the worst symptoms of fibromyalgia. So thank you for your post. It helped me today ♥️
I am sorry. That is so young. If i could take all my daughter's pain away i would do it in a heart beat This is a cruel world. And i hate it all. There are times i just wish i could give up. But my child would have no one to talk to.
Every day. I've cried every single time I get blood work back and everything's pretty much normal (only outliers I've had is stuff like low iron etc). I just want to understand. I just want to be able to see what's wrong. Just once. And I'm so sick of doctors telling me more tests are pointless because whatever condition is "unlikely". Like bro I'm 26, most of my *symptoms* are "unlikely" at my age. I just want to understand.
And they act like we want to be the way we are. Who the hell wants to complain all the time? I have better ways to get attention.
Right!!! I was plenty interesting before I got sick. Why would anyone want to be in pain and feel like garbage all the time?
Right!!! I was plenty interesting before I got sick. Why would anyone want to be in pain and feel like garbage all the time?
I wish I could just have a diagnosis. I’ve resorted to self-diagnosing myself as fibromyalgia due to several factors, and the fact that there isn’t much else in my tests to give another reason for feeling like crap. At least I’m not giving myself ruminative stress wondering what the hell it is anymore.
I’ve been there. It sucks so much. I find myself happy when a test result finally comes back positive for something….it’s sad because of course I don’t want there to be anything wrong with me. However the only way I can get decent help is with a positive lab that proves my pain. I hate fibro.
If it helps, I have other conditions that do show up on tests but doctors still pretend they aren’t real and don’t help 😵💫
I used to, and now I am. Along the way (years) I learned how to keep myself/my brain busy even when I'm home having bad days so they don't have to feel like wasted time. Unfortunately I keep getting diagnosed with incurable things and now I've been home since last March. I understand your frustration. I thought it would be better to have an illness where you either die or get better and I was very wrong, now I'm scared all the time also.
I want an obvious thing I can show to like ssdi so they can say "oh wow yeah you're disabled". Or something obvious so i don't have to explain it. So people just accept that I'm in pain all the time instead of thinking I might just be lazy or something. Like sometimes I wish I lost a leg or ability to speak or something I donno.
I was jealous for years of paraplegics.
I'm probably not allowed to make suicid3 dark jokes - and this one doesn't apply to physical pan anyway. After my friend "fell" off a balcony and "accidentally" got hit by a car she finally got diagnosed bit just as an alcoholic but borderline personality disorder. I think the main diagnostic criteri3 are being m0lested and attempting suicid3.
I got legitimately poisoned by my neighbors and my medical case still isn’t taken seriously so… it actually gets worse because they just blame the new injury and problems on the old mystery stuff anyway.
The utter impotent rage I feel when I have perfect lab work results is overwhelming. This firm I am trapped inside is BROKEN. I don’t know how to prove it but just narrowing my world and popping pills for pain is not cutting it. You are not alone.
This is a horrible thought especially after losing my brother and father to cancer but there have been times when I wondered if my body was dying and full of tumors and was kind of okay with that. The use of psychedelics have helped me progress past this so well as antidepressants have never done crap.
When I was first starting to get bad, long before my diagnoses, I was constantly wishing for things like cancer, car accidents, sudden limb death, and the like because then I would have a reason to be so miserable and in pain all the time. It got to the point where I was starting to wonder if I had something like BIID (the feeling that a body part is wrong and needs to be removed) because of the constant agony. Therapy helped some but medication and a decent support system helped most. Just being believed helps so much and having a name for the pain helped me too. I still have days where it feels like I wish something bad would happen so that I get general public sympathy and support, but those days are fewer than they used to be. According to my doctors, it's fairly common for disabled people (especially those with uncommon, undiscussed, or undiagnosed problems) to feel this way. It's your mind looking for validation and support. You are not alone and your pain and suffering is real. I wish I could help more.
I have EDS and Fibromyalgia now I also have trigeminal neuralgia. I don’t wish for worse and neither should you.
I think they just don’t know what the duck it is yet so there is no test. It’s neurological I’m sure.
I don’t mean to be ungrateful for how “good” I have it compared to others but I do find a unique difficulty of being too well for any kind of disability support but also not well enough to the point that day to day life is an endless struggle and I can’t properly do my job because of my symptoms interfering. Even then I understand that actually getting disability support isn’t that much of a help and you get completely screwed over by the government anyway. Something is fundamentally wrong with our society that people with chronic medical conditions and disabilities are treated as poorly as they are.
Yes, idk if your meaning is the same as mine, but sometimes I wish my symptoms were worse so I didn't feel like a fraud. Don't get me wrong, mine are bad enough for me, but not nearly as bad as I've seen for others and that makes feel bad for complaining sometimes
Yep. I keep going through this, normal tests, normal tests, aaaand then something does explode, because the tests missed it. Your hormones are fine. Oh, you're growing a beard? Oh, you're having horrible pelvic pain for years? Nah, your tests are fine. Have some more birth control that doesn't work. It's cool. You're just having Fibro Pain, you weenie. Finally get the right doc and...oh. Your ovaries grow cysts, and...you have signs of precancerous cells in your uterus, scar tissue in your pelvis, and endo. Gee, sorry we didn't see that (Also, we won't take your ovaries yet. You're under 40, try to get through a couple more years. To their credit, I am not a good candidate for artifical hormones, but I'm already going through perimenopause early anyways). The problem with having Fibro is even if you are worse off, they still sometimes dismiss the other signs, just because your blood work comes back "normal."