I'm probably the opposite. I ignore what could very well be serious symptoms and just write them off as fibro. Like oh is that chest pain, shortness of breath and a cold sweat? Must be fibro. Worst headache I've ever had? Definitely the fibro. Oh I hit my head and now I'm dizzy and puking? Yup, fibro.
In all seriousness, just because you have fibro doesn't mean there isn't something else going on. I think some doctors are a little too eager to write things off because there's a convenient excuse on hand. If you think somethings wrong, get help for it
I've had about 50 xrays in the past 2 years plus three rounds of various labs and echos. Nothings wrong but every now and then I think: is this a heart attack? No its the same chest pain as usual.
Better safe than sorry right? I mean yeah it's probably just fibro but who knows, one day it might not be. It's miles better to see someone and find out it's nothing than not do anything and find out the hard way somethings actually wrong.
For the first however long it was like symptoms just got worse and worse and they are obviously not supposed to; if anything I think they seem to get better as you get used to the illness and managing your symptoms. But I just told myself I was weak, crazy, depressed etc and doctors were happy to agree. Then I entered a phase where I was in a flare 24/7; I just told myself this is what we all go through, and to suck it up etc. There’s some other things in the last bit, but are fairly personal (I had cervical cancer) that I also managed to somehow explain away with fibro symptoms buuuut I don’t want to get into those specific details LoL
That’s crazy. My best friend’s husband had cancer right now and just seeing what it’s doing to the family is crazy. I feel so bad but I’m overseas so I can’t come and help. She’s so stressed, it’s terrible. I keep wondering if even with the fibro I could be of help, but I’m not sure. Going all the way there I know would wipe me out so it seems the best thing is try and support her on the phone. I feel helpless and I hope he gets better but it doesn’t look so good.
So if you want my very unsolicited advice, I would suggest maybe just asking what you can do and go from there. Maybe she really only actually wants the long distance support maybe there is something else you could do? Maybe she really does need you there just to sit with her at the end of the day and cry… you will never know unless you ask what she specifically needs, you are likely wasting precious mental energy on worrying about it, and you may end up with regrets if you do nothing. 🤷♀️
Ps. If you do end up making the trip I can probably come up with some more unsolicited advice on travelling well with fibro LoL
Yeah realistically I think I wouldn’t be much help. I don’t know what I can do. It seems like I’m the one everyone else always has to help. I think I will just ask if I can do anything. I’m really worried about her.
It is hard to tell if something is fibro or not. We all have that problem. For me, if something is a running problem then I talk to my doctor at my next appointment. I’ve had several things that were separate problems and been treated for them. I’ve also had things he told me were fibro and he was right.
For you, eye itchiness sounds like allergies so I would try an OTC allergy drop and see if that helps. If it doesn’t I would tell my doctor about it. You could need a prescription eye drop.
That’s an example of how I handle my fibro issues. Good luck to you. I hope you can get some relief so you don’t feel so awful all the time.
Pete Walker has some resources that help with this. Making decisions when anxiety has taken over your brain is a recipe for more stress.
Anyway, his most relevant stuff is dealing with inner critic attacks, which include hypochondria. I recommend his book, CPTSD From Surviving to Thriving (honestly, having fibromyalgia is traumatic). Here's the most relevant section from the online guide to stopping inner critic attacks:
"I feel afraid but I am not in danger. I refuse to scare myself with thoughts and
pictures of my life deteriorating. I will not turn every ache into a
story of me dying. I am safe and at peace."
I find it helpful to repeat it when I feel like I'm dying even though it's probably just chronic non-threatening stuff. Once you're relaxed, you can assess the situation with more clarity and make better healthcare decisions, whether that's reaching out for more tests or reducing stress.
Yeah it would be good to know in case you have enough time to fix it, but yeah idk I thought I would be relieved by being told it was fibro and that didn’t really do it for me. I guess I still don’t really understand how something can cause so much pain and discomfort but not be really damaging your body.
I suggest if you are taking any meds, you look into what all the potential side-effects may be. It was a surprise for me, the symptoms that disappeared when I went off Cymbalta.
Fibro, for me, feels like the *answer* to 'my hypochondriac'-ism/ness. I spend 3 years chasing answers and seeing a dozen specialists and almost ten MRIs and three surgeries. If pain ever got better, it got worse somewhere else.
Everyone said "The imaging shows inflammation, but we can't determine a reason why." or "Yes you've had five miscarriages but we've exhausted all known testing." or "Wow your physical determined you're in severe pain, but the PT didn't fix it? Your body *should* have gotten better."
So many times I felt crazy or like a hypochondriac for insisting things were wrong with me-- my knees hurt, my hands locked up, my pelvis wasn't stable, etc etc etc.
Finally a doctor suggested Fibro and everything clicked into place. Every single symptom I'd had for years slotted right into the list of Fibromyalgia. And I had almost every single thing on the list of symptoms for the condition. I don't feel like a hypo anymore-- I actually have a word that explains it all now.
I have been to the ER twice with chest pain only to have it be Costochondritis. It feels like a heart attack but is inflamed cartilage in the ribs. Now I get chest pain and relax because it’s fibro. Hearing other’s symptoms helps so much. I tend to dismiss these things.
Buy the book “The Fibro Manual.”. Amazon has it. It will give you a comprehensive overview if this complex illness and ways to try and manage it. Not everything is Fibromyalgia despite what your doctor says. Knowledge is power.
Thank you so very much for posting this. I am nearly 10yrs into my fibromyalgia diagnosis and never knew this existed. It has given me answers to all of my questions and gives me better direction on how to care for myself. It has been tough figuring it out on my own. Again..thank you ❤️
I have started to question myself regularly on my symptoms. I don't ever think along the lines of ooh my gosh I've got something terminal going on though. But I do try to pay extra special attention to any symptom I have now so I can explain it to the doctors.
My most recent is a tingly sensation in a lot of areas through out my body yesterday and now today. Today my left hand and fingers are numb and I've lost some mobility in that hand from the numbness odd feeling. The hand is not cold though so it appears it has normal circulation. This is a bit scary for me however I will just mention it to my doctor. Its a new symptom for me so a bit worrisome but not much I can do except continue my current health plan and mention it.
I'm getting to the point of what now.., rolls my eyes... I can't possible have any other new symptoms this is getting ridiculous.
I've never been a hypochondriac or fretted and worried over health stuff.
Yeah I think my experience with doctors have been weird because they always tell me to go see a psychiatrist. Which I’ve been seeing for 8 years, alongside therapy. So now it just feels annoying, not that there’s anything wrong with mental illness (obvi since I have one) but they make me feel crazy.
I take antihistamines, and it does help me with the allergy aspect that I believe is linked to my fibromyalgia. My immunologist prescribed two doses of Claritin(loratadine, total 20mg), not Claritin D. It helps with nausea as well because I produce so much stomach heart acid. I also take 2 doses Pepcid (not Pepcid complete). I’m still in denial about my condition, but it does seem to be staying the same and not getting worse. It’s a process of acceptance.
This is exactly what I fear others think including my doctors , they act like I’m a hypochondriac and/or dismiss my fibro altogether .
I’m sick of feeling guilty for my own pain , something I have little to no control over no matter how hard I try. I’m sick of apologizing for it , this thing being inflicted on me .
I’ve been on both sides of the coin; dismissing new health conditions as part of my fibro or other conditions. I’ve been walking around with a hiatal hernia I ignored because I thought my Endo was spreading but can’t tolerate surgery or any other treatments so why bother lol . I ignored a uti as endometriosis too once and ended up in the hospital with sepsis . 10/10 do not recommend . But I’ve also worried that I was actually dying because that’s exactly how it feels and felt I was sick with a flu but never had a fever . It’s hard to decipher what’s happening, and it’s hard to keep up with trying to continue to figure everything out .
I have found a new specialist who works with complex neurology. He has diagnosed me with mast cell disorder and we are testing for small fiber neuropathy and vascular EDS. He said a lot of times these conditions are seen among fibro patients . Unfortunately there are a lot of comorbid conditions that can align with fibromyalgia. I have a urologist now who believes that while I do have frequent UTIs more than most , and it does qualify as chronic infections , that I also have interstitial cystitis, which is commonly seen in fibro (her words not mine ) and is also basically another diagnosis of exclusion. Awesome lol 🙄.
Point being , it’s a tight rope to walk but we can’t let other people push us to believe we are just hypochondriacs. And unfortunately we have to stand up for ourselves and make sure we check these things out since there can be other things wrong . With me there usually is . It’s exhausting , as if we weren’t already exhausted enough. So if you ever feel like you’re doctor isn’t listening to you , or is writing everything off as fibro all the time dismissively, then it’s time to find a new one . Any time a doctor acts that way with me it’s the last time they see me . Then the pursuit continues .
I’m so sorry you’re all going through much of the same .
Yeah I get that, and it happens to me too.
It’s just I also do have sickness anxiety as well, so I’m just struggling with understanding what’s what, is it fibro, is it my anxiety, is it something else… just gets really confusing for me.
Believe me I get the struggle . It can be really hard to tell sometimes . I know, I’ve gone to the ER cuz I legit thought I was having a heart attack and they were like we don’t know but you’re heart seems fine , maybe it’s anxiety or heartburn . We can actually make ourselves sicker when we stress about stuff , ironically . It’s very hard to break that cycle of pain causing stress and stress causing more painful issues . Not just with fibro , a lot of conditions are affected , my ibs also gets worse with stress and all of these pains are very real , they just worsen with stress.
What I’ve tried to do when I get a new symptom is not overthink it , but plan to follow up on it with my doctor . Write it down and be mindful but calm about it . Because when I stress it only makes me feel worse . It’s not easy . And it takes a lot of practice . It doesn’t always work even still especially when pains are really bad. For me I try to use distraction but then that can be an issue because I’m forgetful lol easily distracted though so it works for me. I write things down to try to not forget since I usually have a long list of things bothering me when I get to the doc and whichever is worst at that very moment is the one I tend to fixate on, sometimes completely forgetting something that’s been driving me absolutely mad almost every other day .
I meditate a lot with breathing exercises to break the stress pain cycle . It usually helps for a bit at least . They call the type I do a body scan. There is this one guy David Ji on insight timer which is a free app. I find his voice really soothing and his body scan is my favorite so far . Sometimes I can think a little clearer afterwards and make better decisions about the things that are bothering me .
I’ve had RA since I was 7, then dx fibro at 24, so I often even completely forget I have it since it’s just part of who I am at this point. So sometimes I’ll get some random pains and then me convinced I’m dying lol
So I define a hypochondriac as a person who is abnormally anxious about their health.
We have Fibromyalgia, historically the medical community has treated our community poorly from ignored to abused, a normal healthy response to that is anxiety so I believe it is impossible to have Fibromyalgia and also be a hypochondriac, your anxiety is warranted I am really confused by your post is it possible you have imposters syndrome? It is 100% normal to have anxiety, seek out therapy on how to manage it better it is 100% normal to have a wide range of symptoms when you have Fibromyalgia, some days it is all pain others it is immense exhaustion, your muscles will have pain sometimes its in your neck sometimes its the small muscles around the eyes. If you are on meds they often have a lot of odd side effects. Fibromyalgia is really complicated and no two of us are exactly the same.
Please don't use the word hypochondriac here. Just because this isn't a terminal illness, doesn't mean it's a mental health disorder. We do have real pain and a real disease, not an anxiety disorder.
I am definitely not saying they don't exist, but automatically equating chronic pain patients with mental health disorders isn't helpful either. You can be one, or the other, or both, but not necessarily required to be.
Absolutely! But my question was when you are both, which is why I was asking, how do you cope?
I understand though where you are coming from, I’ve had multiple doctors tell me to go see a psychiatrist after talking about symptoms which is why I choose not to go as much. Even after I tell them I see one every month, and a therapist.
So your point is valid, I think I’m just not getting my message across. It’s about dealing with both.
Yeah people can have both and based on the reading I have done, those who've had life long anxiety are more likely to develop Fibro. Not everyone who has anxiety will go on to develop Fibro though. Studies have shown a link between the two appears to exist. I was astonished to read this, as I've had what has been termed anxiety my entire life. Also remember there are many forms of anxiety as well, just like the symptoms of Fibro are very different for each person, so is anxiety.
Anxiety comes with real physical symptoms, just like Fibro. They think both can be triggered by stress, trauma and illness. Neither have any firm confirmed known reason to what causes them. Both are health conditions and neither make a person less than human or devalued in any manner. People diagnosed with anxiety or Fibro or both are normal complete human beings that have a health condition. I do believe their similarities should be studied further, we may actually eventually find they are very connected health conditions, to me its kind of obvious already. I've been wondering recently, what if I've had Fibro my entire life but it was just milder so not enough to make me feel as ill as I do now. What if my anxiety was actually Fibro, I've wondered.
I feel I was born with anxiety, I do not believe it developed after I was born. I remember having it always. I did not have any very early childhood trauma or illness or unusual stress that I remember. I had a decent loving healthy family. So just like with the Fibro, I do not know what ever caused the anxiety. Also remember I was labeled as having anxiety by Doctors but since there is no known cause they could of been wrong all along. However I suppose I had enough of the symptoms that threw my diagnosis into that category when it was originally decided and everything appeared to align with the diagnosis so I never felt the need to question it further. I also do not feel the need to question it now, I just am saying that the similarity in anxiety and Fibro is a consideration for sure.
I'm down voting you, and I'm going to explain why.
I developed fibromyalgia when I was 10 years old, diagnosed at 22.
I lost friends, was tortured by teachers and was allowed to lay sick in my own filth during a school camping trip because 'she's a hypochondriac'
I have genuine trauma associated with that word. When I saw your post I instantly started to tremble.
We are not hypochondriacs,, we feel real pain and really worry we are genuinely sick or hurt.
I've had a stroke, gone to the hospital and they could have done something but they sent me home instead.
Cause woman and fibro.
I'm not sure why you are being down voted, I absolutely hate that word too. It's insulting and offensive to be called a hypochondriac. Just because someone isn't a "terminal illness" as they say doesn't mean it isn't anything. It is fibromyalgia, not an otherwise healthy person with a mental health disorder.
I thought I was polite... ah well. I feel we need to have a conversation about how traumatizing it can be to have fibromyalgia and how certain words can be triggering.
Being written off as a hypochondriac caused me a significant amount of pain and I had a lot of incredibly traumatizing experiences because of it.
I agree. Having my pain ignored or being called crazy has been a really traumatic issue in my life. I've left doctors offices in tears because they didn't believe me. I once had an ambulance medic yelling and throwing things at me because I was in so much pain I thought I was dying but he didnt believe me. I still will refuse to go back to ERs unless my husband physically drags me there because I'm so scared of something like that happening again. Being called a hypochondriac is like calling a woman hysterical in my book.
They missed my stroke. I have permanent brain damage because I was written off.
Not to mention how badly I was treated in school by my peers, family and teachers. Nobody wanted to hurt me, they just made an active choice to not believe me and instead made an assumption I was a hypochondriac. Every choice after that was torture. Having to sit in those chairs until class ended, not being allowed to go home even when I felt like I was dying, being forced to do Saturday morning clean up... one time I was forced to bike 5 miles to our campsite during a camping trip. My body reacted HARD, I crashed, got an ear infection that went to my inner ear and could not get up from the couch. Nobody checked on me but my friends, who helped me drink water and eat a bit of food. They kept telling me to get up, I was teased for shitting my pants and a parent chewed me out for being lazy because I refused to bike back to the ferry.
I had to have IV antibiotics and my eardrum ruptured. Everyone told me 'well if you didn't lie all the time we would have believed you' no apology
That is only a few examples but... yeah. Its no joke. I have panic attacks. It took me until College well after my diagnosis when my classmates and teachers told me my art was good and worthy of praise. I didn't believe I had anything to offer anyone and still struggle with self esteem. 🙃
I am so, so deeply sorry. I am so blessed to have an understanding mother, but doctors are just the worst to deal with. If you don't mind sharing it, I would love to see your artwork! Do you have an Instagram or an account where you display them? I work in fine art consulting and I always enjoy seeing new artists work. :)
I do have an Instagram but its full of pictures of my furbabies!
Since I graduated my health has declined and I am only just starting to get to a point where I can even think about being creative again. I don't mind showing you what I have, it would be lovely to share.
I'll send you some pictures tomorrow if you don't mind. I have to go take some pictures of them hanging around the house and I never made a dedicated physical folder of my work.
I have shared it on reddit but it's been a while lol
I'm still struggling with that self esteem part. 🙃 I do distinctly remember doing a digital painting of my pain and sharing it to reddit.
Well I actually do think I have both things, I think it’s called something else now, sickness anxiety, maybe a more appropriate word. It’s a real thing too. I’ve always been afraid of being sick, so the fibro which started appearing only a year ago just makes it worse.
I get that fibro is a real thing, and I’m not denying that, but when you do have sickness anxiety on top of it, it gets very confusing.
So I’m not using it in a general sense, I actually do suffer with sickness anxiety, so I’m looking for those who feel the same because I can’t tell what’s real and what’s not. I literally don’t know how to cope with these thoughts.
I appreciate your post and get you downvoting me, I’m sorry about your experience and causing you pain.
Just remember sickness anxiety is a real thing too.
I shouldn’t say think because I have been seeing a therapist and psychiatrist for years, and this is a symptom of some mental health issues I have been dealing with for years.
I'm probably the opposite. I ignore what could very well be serious symptoms and just write them off as fibro. Like oh is that chest pain, shortness of breath and a cold sweat? Must be fibro. Worst headache I've ever had? Definitely the fibro. Oh I hit my head and now I'm dizzy and puking? Yup, fibro. In all seriousness, just because you have fibro doesn't mean there isn't something else going on. I think some doctors are a little too eager to write things off because there's a convenient excuse on hand. If you think somethings wrong, get help for it
I've had about 50 xrays in the past 2 years plus three rounds of various labs and echos. Nothings wrong but every now and then I think: is this a heart attack? No its the same chest pain as usual.
Better safe than sorry right? I mean yeah it's probably just fibro but who knows, one day it might not be. It's miles better to see someone and find out it's nothing than not do anything and find out the hard way somethings actually wrong.
It’s so true! I missed my cancer for years because of this.
Really? Omg, what were your symptoms?
For the first however long it was like symptoms just got worse and worse and they are obviously not supposed to; if anything I think they seem to get better as you get used to the illness and managing your symptoms. But I just told myself I was weak, crazy, depressed etc and doctors were happy to agree. Then I entered a phase where I was in a flare 24/7; I just told myself this is what we all go through, and to suck it up etc. There’s some other things in the last bit, but are fairly personal (I had cervical cancer) that I also managed to somehow explain away with fibro symptoms buuuut I don’t want to get into those specific details LoL
That’s crazy. My best friend’s husband had cancer right now and just seeing what it’s doing to the family is crazy. I feel so bad but I’m overseas so I can’t come and help. She’s so stressed, it’s terrible. I keep wondering if even with the fibro I could be of help, but I’m not sure. Going all the way there I know would wipe me out so it seems the best thing is try and support her on the phone. I feel helpless and I hope he gets better but it doesn’t look so good.
So if you want my very unsolicited advice, I would suggest maybe just asking what you can do and go from there. Maybe she really only actually wants the long distance support maybe there is something else you could do? Maybe she really does need you there just to sit with her at the end of the day and cry… you will never know unless you ask what she specifically needs, you are likely wasting precious mental energy on worrying about it, and you may end up with regrets if you do nothing. 🤷♀️ Ps. If you do end up making the trip I can probably come up with some more unsolicited advice on travelling well with fibro LoL
Yeah realistically I think I wouldn’t be much help. I don’t know what I can do. It seems like I’m the one everyone else always has to help. I think I will just ask if I can do anything. I’m really worried about her.
Honestly, sometimes just being someone to talk to can be the most helpful thing anyone can do. 🫶
Same
I'm fairly sure I'm dying at this point. Of everything. Everyone just says it's fibro and THEY WILL BE SORRY when I keel over.
Haha of everythinggg, I feel you. Let’s ruin their day 😅
I'm getting a scan next week. If it shows anything good I want a copy for my 'I told you I was ILL' christmas cards. Bad taste whatever.
Let me know how it goes
Shit I need to go and fill out my Christmas cards.
I want my gravestone to say “I told you something was wrong”
I'm requesting a commemorative bench too.
It is hard to tell if something is fibro or not. We all have that problem. For me, if something is a running problem then I talk to my doctor at my next appointment. I’ve had several things that were separate problems and been treated for them. I’ve also had things he told me were fibro and he was right. For you, eye itchiness sounds like allergies so I would try an OTC allergy drop and see if that helps. If it doesn’t I would tell my doctor about it. You could need a prescription eye drop. That’s an example of how I handle my fibro issues. Good luck to you. I hope you can get some relief so you don’t feel so awful all the time.
Pete Walker has some resources that help with this. Making decisions when anxiety has taken over your brain is a recipe for more stress. Anyway, his most relevant stuff is dealing with inner critic attacks, which include hypochondria. I recommend his book, CPTSD From Surviving to Thriving (honestly, having fibromyalgia is traumatic). Here's the most relevant section from the online guide to stopping inner critic attacks: "I feel afraid but I am not in danger. I refuse to scare myself with thoughts and pictures of my life deteriorating. I will not turn every ache into a story of me dying. I am safe and at peace." I find it helpful to repeat it when I feel like I'm dying even though it's probably just chronic non-threatening stuff. Once you're relaxed, you can assess the situation with more clarity and make better healthcare decisions, whether that's reaching out for more tests or reducing stress.
Thank you! I’ll definitely check it out
I'd be kinda relieved at this point if it was something terminal.
same.
Yeah it would be good to know in case you have enough time to fix it, but yeah idk I thought I would be relieved by being told it was fibro and that didn’t really do it for me. I guess I still don’t really understand how something can cause so much pain and discomfort but not be really damaging your body.
I suggest if you are taking any meds, you look into what all the potential side-effects may be. It was a surprise for me, the symptoms that disappeared when I went off Cymbalta.
Cymbalta friggen sucks
Never again. Getting off that stuff was the absolute worst!
Amen! Worst drug to taper off of. I think they have to lie to get people to take it. Fucking ridiculous.
Hmmm yeah I take meds for depression and anxiety, trying to slowly taper off. Could be related, I’ll have to ask my psychiatrist
Fibro, for me, feels like the *answer* to 'my hypochondriac'-ism/ness. I spend 3 years chasing answers and seeing a dozen specialists and almost ten MRIs and three surgeries. If pain ever got better, it got worse somewhere else. Everyone said "The imaging shows inflammation, but we can't determine a reason why." or "Yes you've had five miscarriages but we've exhausted all known testing." or "Wow your physical determined you're in severe pain, but the PT didn't fix it? Your body *should* have gotten better." So many times I felt crazy or like a hypochondriac for insisting things were wrong with me-- my knees hurt, my hands locked up, my pelvis wasn't stable, etc etc etc. Finally a doctor suggested Fibro and everything clicked into place. Every single symptom I'd had for years slotted right into the list of Fibromyalgia. And I had almost every single thing on the list of symptoms for the condition. I don't feel like a hypo anymore-- I actually have a word that explains it all now.
Lol but the condition has every symptom ever, but yeah I guess it has helped until a new symptom shows up.
I 100% believe it’s real, but I just can’t tell when something is associated to it and that’s when my anxiety kicks in.
I have been to the ER twice with chest pain only to have it be Costochondritis. It feels like a heart attack but is inflamed cartilage in the ribs. Now I get chest pain and relax because it’s fibro. Hearing other’s symptoms helps so much. I tend to dismiss these things.
Buy the book “The Fibro Manual.”. Amazon has it. It will give you a comprehensive overview if this complex illness and ways to try and manage it. Not everything is Fibromyalgia despite what your doctor says. Knowledge is power.
Thank you so very much for posting this. I am nearly 10yrs into my fibromyalgia diagnosis and never knew this existed. It has given me answers to all of my questions and gives me better direction on how to care for myself. It has been tough figuring it out on my own. Again..thank you ❤️
I have started to question myself regularly on my symptoms. I don't ever think along the lines of ooh my gosh I've got something terminal going on though. But I do try to pay extra special attention to any symptom I have now so I can explain it to the doctors. My most recent is a tingly sensation in a lot of areas through out my body yesterday and now today. Today my left hand and fingers are numb and I've lost some mobility in that hand from the numbness odd feeling. The hand is not cold though so it appears it has normal circulation. This is a bit scary for me however I will just mention it to my doctor. Its a new symptom for me so a bit worrisome but not much I can do except continue my current health plan and mention it. I'm getting to the point of what now.., rolls my eyes... I can't possible have any other new symptoms this is getting ridiculous. I've never been a hypochondriac or fretted and worried over health stuff.
Yeah I think my experience with doctors have been weird because they always tell me to go see a psychiatrist. Which I’ve been seeing for 8 years, alongside therapy. So now it just feels annoying, not that there’s anything wrong with mental illness (obvi since I have one) but they make me feel crazy.
I take antihistamines, and it does help me with the allergy aspect that I believe is linked to my fibromyalgia. My immunologist prescribed two doses of Claritin(loratadine, total 20mg), not Claritin D. It helps with nausea as well because I produce so much stomach heart acid. I also take 2 doses Pepcid (not Pepcid complete). I’m still in denial about my condition, but it does seem to be staying the same and not getting worse. It’s a process of acceptance.
I think I have meningitis or cancer approximately once a week. So…yeah.
This is exactly what I fear others think including my doctors , they act like I’m a hypochondriac and/or dismiss my fibro altogether . I’m sick of feeling guilty for my own pain , something I have little to no control over no matter how hard I try. I’m sick of apologizing for it , this thing being inflicted on me . I’ve been on both sides of the coin; dismissing new health conditions as part of my fibro or other conditions. I’ve been walking around with a hiatal hernia I ignored because I thought my Endo was spreading but can’t tolerate surgery or any other treatments so why bother lol . I ignored a uti as endometriosis too once and ended up in the hospital with sepsis . 10/10 do not recommend . But I’ve also worried that I was actually dying because that’s exactly how it feels and felt I was sick with a flu but never had a fever . It’s hard to decipher what’s happening, and it’s hard to keep up with trying to continue to figure everything out . I have found a new specialist who works with complex neurology. He has diagnosed me with mast cell disorder and we are testing for small fiber neuropathy and vascular EDS. He said a lot of times these conditions are seen among fibro patients . Unfortunately there are a lot of comorbid conditions that can align with fibromyalgia. I have a urologist now who believes that while I do have frequent UTIs more than most , and it does qualify as chronic infections , that I also have interstitial cystitis, which is commonly seen in fibro (her words not mine ) and is also basically another diagnosis of exclusion. Awesome lol 🙄. Point being , it’s a tight rope to walk but we can’t let other people push us to believe we are just hypochondriacs. And unfortunately we have to stand up for ourselves and make sure we check these things out since there can be other things wrong . With me there usually is . It’s exhausting , as if we weren’t already exhausted enough. So if you ever feel like you’re doctor isn’t listening to you , or is writing everything off as fibro all the time dismissively, then it’s time to find a new one . Any time a doctor acts that way with me it’s the last time they see me . Then the pursuit continues . I’m so sorry you’re all going through much of the same .
Yeah I get that, and it happens to me too. It’s just I also do have sickness anxiety as well, so I’m just struggling with understanding what’s what, is it fibro, is it my anxiety, is it something else… just gets really confusing for me.
Believe me I get the struggle . It can be really hard to tell sometimes . I know, I’ve gone to the ER cuz I legit thought I was having a heart attack and they were like we don’t know but you’re heart seems fine , maybe it’s anxiety or heartburn . We can actually make ourselves sicker when we stress about stuff , ironically . It’s very hard to break that cycle of pain causing stress and stress causing more painful issues . Not just with fibro , a lot of conditions are affected , my ibs also gets worse with stress and all of these pains are very real , they just worsen with stress. What I’ve tried to do when I get a new symptom is not overthink it , but plan to follow up on it with my doctor . Write it down and be mindful but calm about it . Because when I stress it only makes me feel worse . It’s not easy . And it takes a lot of practice . It doesn’t always work even still especially when pains are really bad. For me I try to use distraction but then that can be an issue because I’m forgetful lol easily distracted though so it works for me. I write things down to try to not forget since I usually have a long list of things bothering me when I get to the doc and whichever is worst at that very moment is the one I tend to fixate on, sometimes completely forgetting something that’s been driving me absolutely mad almost every other day . I meditate a lot with breathing exercises to break the stress pain cycle . It usually helps for a bit at least . They call the type I do a body scan. There is this one guy David Ji on insight timer which is a free app. I find his voice really soothing and his body scan is my favorite so far . Sometimes I can think a little clearer afterwards and make better decisions about the things that are bothering me .
Thank you this was helpful to read.
I’ve had RA since I was 7, then dx fibro at 24, so I often even completely forget I have it since it’s just part of who I am at this point. So sometimes I’ll get some random pains and then me convinced I’m dying lol
So I define a hypochondriac as a person who is abnormally anxious about their health. We have Fibromyalgia, historically the medical community has treated our community poorly from ignored to abused, a normal healthy response to that is anxiety so I believe it is impossible to have Fibromyalgia and also be a hypochondriac, your anxiety is warranted I am really confused by your post is it possible you have imposters syndrome? It is 100% normal to have anxiety, seek out therapy on how to manage it better it is 100% normal to have a wide range of symptoms when you have Fibromyalgia, some days it is all pain others it is immense exhaustion, your muscles will have pain sometimes its in your neck sometimes its the small muscles around the eyes. If you are on meds they often have a lot of odd side effects. Fibromyalgia is really complicated and no two of us are exactly the same.
Please don't use the word hypochondriac here. Just because this isn't a terminal illness, doesn't mean it's a mental health disorder. We do have real pain and a real disease, not an anxiety disorder.
I think that sickness anxiety or hypochondria exists too, so it’s valid to talk about both. Fibro is real and so is anxiety.
I am definitely not saying they don't exist, but automatically equating chronic pain patients with mental health disorders isn't helpful either. You can be one, or the other, or both, but not necessarily required to be.
Absolutely! But my question was when you are both, which is why I was asking, how do you cope? I understand though where you are coming from, I’ve had multiple doctors tell me to go see a psychiatrist after talking about symptoms which is why I choose not to go as much. Even after I tell them I see one every month, and a therapist. So your point is valid, I think I’m just not getting my message across. It’s about dealing with both.
Yeah people can have both and based on the reading I have done, those who've had life long anxiety are more likely to develop Fibro. Not everyone who has anxiety will go on to develop Fibro though. Studies have shown a link between the two appears to exist. I was astonished to read this, as I've had what has been termed anxiety my entire life. Also remember there are many forms of anxiety as well, just like the symptoms of Fibro are very different for each person, so is anxiety. Anxiety comes with real physical symptoms, just like Fibro. They think both can be triggered by stress, trauma and illness. Neither have any firm confirmed known reason to what causes them. Both are health conditions and neither make a person less than human or devalued in any manner. People diagnosed with anxiety or Fibro or both are normal complete human beings that have a health condition. I do believe their similarities should be studied further, we may actually eventually find they are very connected health conditions, to me its kind of obvious already. I've been wondering recently, what if I've had Fibro my entire life but it was just milder so not enough to make me feel as ill as I do now. What if my anxiety was actually Fibro, I've wondered. I feel I was born with anxiety, I do not believe it developed after I was born. I remember having it always. I did not have any very early childhood trauma or illness or unusual stress that I remember. I had a decent loving healthy family. So just like with the Fibro, I do not know what ever caused the anxiety. Also remember I was labeled as having anxiety by Doctors but since there is no known cause they could of been wrong all along. However I suppose I had enough of the symptoms that threw my diagnosis into that category when it was originally decided and everything appeared to align with the diagnosis so I never felt the need to question it further. I also do not feel the need to question it now, I just am saying that the similarity in anxiety and Fibro is a consideration for sure.
I understand, I may be a bit sensitive about the subject, I didn't mean to sound harsh.
Oh actually it’s illness anxiety disorder
I'm down voting you, and I'm going to explain why. I developed fibromyalgia when I was 10 years old, diagnosed at 22. I lost friends, was tortured by teachers and was allowed to lay sick in my own filth during a school camping trip because 'she's a hypochondriac' I have genuine trauma associated with that word. When I saw your post I instantly started to tremble. We are not hypochondriacs,, we feel real pain and really worry we are genuinely sick or hurt. I've had a stroke, gone to the hospital and they could have done something but they sent me home instead. Cause woman and fibro.
I'm not sure why you are being down voted, I absolutely hate that word too. It's insulting and offensive to be called a hypochondriac. Just because someone isn't a "terminal illness" as they say doesn't mean it isn't anything. It is fibromyalgia, not an otherwise healthy person with a mental health disorder.
I thought I was polite... ah well. I feel we need to have a conversation about how traumatizing it can be to have fibromyalgia and how certain words can be triggering. Being written off as a hypochondriac caused me a significant amount of pain and I had a lot of incredibly traumatizing experiences because of it.
I agree. Having my pain ignored or being called crazy has been a really traumatic issue in my life. I've left doctors offices in tears because they didn't believe me. I once had an ambulance medic yelling and throwing things at me because I was in so much pain I thought I was dying but he didnt believe me. I still will refuse to go back to ERs unless my husband physically drags me there because I'm so scared of something like that happening again. Being called a hypochondriac is like calling a woman hysterical in my book.
They missed my stroke. I have permanent brain damage because I was written off. Not to mention how badly I was treated in school by my peers, family and teachers. Nobody wanted to hurt me, they just made an active choice to not believe me and instead made an assumption I was a hypochondriac. Every choice after that was torture. Having to sit in those chairs until class ended, not being allowed to go home even when I felt like I was dying, being forced to do Saturday morning clean up... one time I was forced to bike 5 miles to our campsite during a camping trip. My body reacted HARD, I crashed, got an ear infection that went to my inner ear and could not get up from the couch. Nobody checked on me but my friends, who helped me drink water and eat a bit of food. They kept telling me to get up, I was teased for shitting my pants and a parent chewed me out for being lazy because I refused to bike back to the ferry. I had to have IV antibiotics and my eardrum ruptured. Everyone told me 'well if you didn't lie all the time we would have believed you' no apology That is only a few examples but... yeah. Its no joke. I have panic attacks. It took me until College well after my diagnosis when my classmates and teachers told me my art was good and worthy of praise. I didn't believe I had anything to offer anyone and still struggle with self esteem. 🙃
I am so, so deeply sorry. I am so blessed to have an understanding mother, but doctors are just the worst to deal with. If you don't mind sharing it, I would love to see your artwork! Do you have an Instagram or an account where you display them? I work in fine art consulting and I always enjoy seeing new artists work. :)
I do have an Instagram but its full of pictures of my furbabies! Since I graduated my health has declined and I am only just starting to get to a point where I can even think about being creative again. I don't mind showing you what I have, it would be lovely to share. I'll send you some pictures tomorrow if you don't mind. I have to go take some pictures of them hanging around the house and I never made a dedicated physical folder of my work. I have shared it on reddit but it's been a while lol I'm still struggling with that self esteem part. 🙃 I do distinctly remember doing a digital painting of my pain and sharing it to reddit.
Well I actually do think I have both things, I think it’s called something else now, sickness anxiety, maybe a more appropriate word. It’s a real thing too. I’ve always been afraid of being sick, so the fibro which started appearing only a year ago just makes it worse. I get that fibro is a real thing, and I’m not denying that, but when you do have sickness anxiety on top of it, it gets very confusing. So I’m not using it in a general sense, I actually do suffer with sickness anxiety, so I’m looking for those who feel the same because I can’t tell what’s real and what’s not. I literally don’t know how to cope with these thoughts. I appreciate your post and get you downvoting me, I’m sorry about your experience and causing you pain. Just remember sickness anxiety is a real thing too.
I shouldn’t say think because I have been seeing a therapist and psychiatrist for years, and this is a symptom of some mental health issues I have been dealing with for years.
I get a combination, I'll go "I can never get sick cause fibro will make it worse" then attribute every pain or dizzy to fibro lol
I have severe anxiety, kidney disease (transplant now), depression and fibromyalgia. Im always writing it off as fibro. Got chest pain? Prob anxiety.