Being dismissed by doctors

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Alakazou

New member
Joined
Jun 20, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
03/2018
Country
CA
State
BC
Hi everyone, I am writing this post today as I have been feeling so unacknowledged and invalidated by doctors during these past few months. I have been diagnosed with Fibromyalgia about 7 or 8 years ago. My pain started in my shoulders, feet, hands, etc. I had brain fog, felt exausted all the time, I did not sleep well and felt stressed quite a bit. I must say that, like most, I too have gone through a lot of trauma and stressfull situations in my life. Just recently, during the pandemic, I was dealing with a neighbor living above me who kept harassing me, I lost my mother during Covid and could not go see her before she passed away as it was not allowed, lost my beloved German Shepherd baby suddenly due to a very aggressive cancer and saw her have an aneurism right in front of me. On top of that, I moved to a new home. Following these latest life experiences, I started feeling pain under my right rib cage. The pain was confusing. Sometimes I thought it was from my liver and sometimes just touching my rib hurt a lot. This pain lasted for months. I had blood work done...normal. Had and ultra sound done, a bit of fatty liver. Had stool samples done, normal... However, the pain continued. I went to emergency twice and was turned around as if I was a nuisance. I also had some sudden unsets of hypoglycemia. Went to see the doctor. After I explained to him what I was experiencing, the test that were done and told him that I had Fibromyalgia, he asked me if I had been under a lot of stress. I told that I had been for quite a while. He asked me to upload a questionaire on my cell phone relating to questions regarding anxiety disorders. He started going through the questions very quickly and I did not really have time to answer with details. In not even 10 minutes, he told me that my doctor should stop doing testing to find out what is causing this pain in my lower right ribs. He said that I had an anxiety disorder and that I needed therapy or medication. I was absolutely floored and felt insulted. A few weeks later, I went to see my doctor again, because my pain was not going away. I explained to her what the previous doctor had said and told her that I did not agree with him. She told me that they could not find a cause to my rib pain and that it was costing a lot of money to do test. She said that my pain was more than likely due to my Fibromyalgia. She then proceeded to tell me that I should take antidepressant. I thought that she was agreeing with the previous doctor. However, she said that antidepressants were often given to patients with Fibromyalgia and that most patients were doing well taking them. Long story short, feeling frustrated my the lack of acknowledgement from the doctors that I have seen, I ask my doctor if the fact that I had Fibromyalgia was going to be a determining factor in doctors taking me seriously or just blaming Fibro if I feel legitimately sick and go see a doctor or go to emergency again in the future? I did not get a straight answer out of her and felt invalided. This fibromyalgia is a curse. It seems like new symptoms pop up here and there and you are just supposed to accept them as due to Fibromyalgia. Does anyone else feel the same?
 
Hi Alakazou, and welcome to the forum.
Sorry to hear you have not had good experiences with doctors. You are in good company here because almost all, if not all of us have had similar experiences and worse. This goes with the territory, it seems, with fibromyalgia.

One thing to keep in mind is that having fibro doesn't mean you do not have an anxiety disorder or depression or whatever else might be going on for you mentally, and many of us myself included have those things as well. Treating those things successfully will ease the symptoms of fibromyalgia, and that doesn't mean that the pain is "all in your head", just that any form of stress will exacerbate the pain and other symptoms of fibro. So, being told you may have an anxiety disorder is not necessarily an insult, although of course it feels that way if it is said in the context you describe.

New symptoms do tend to pop up now and then with fibro, this is true. If it is possible for you to consider, however, I would suggest you attempt not to think of fibro as a curse. Only because thinking of it that way is not going to help but is going to make your feelings about it worse, and we who have this syndrome really need to keep our minds as clear and as positive as possible because that is one of the most important aspects to managing fibromyalgia in a way that allows you to have a life in spite of it. I know.....I speak from hard core experience with this. Your mental attitude is a huge part of either unsuccessfully or successfully living with fibro.

My best advice is twofold. First, read the post i wrote (linked below) and start experimenting with the things you can do for yourself without even needing a doctor at all. You can make a difference in your life on your own. Second, stick around this forum because we are a group of people dedicated to helping each other and being supportive and informational and we will be here for you in whatever way we can.
You are not alone.

 
She then proceeded to tell me that I should take antidepressant. I thought that she was agreeing with the previous doctor. However, she said that antidepressants were often given to patients with Fibromyalgia and that most patients were doing well taking them. Long story short, feeling frustrated my the lack of acknowledgement from the doctors that I have seen, I ask my doctor if the fact that I had Fibromyalgia was going to be a determining factor in doctors taking me seriously or just blaming Fibro if I feel legitimately sick and go see a doctor or go to emergency again in the future? I did not get a straight answer out of her and felt invalided. This fibromyalgia is a curse. It seems like new symptoms pop up here and there and you are just supposed to accept them as due to Fibromyalgia. Does anyone else feel the same?
Hi Alakazou,
2 specific antidepressants are given for fibro, normally in lower dose than for depression: amitriptyline (and nortriptyline) and duloxetine. Whilst saying "most patients were doing well" is probably said to encourage you to try them, these 2 do help some.
Your question to the doc is one no one can answer - it depends on the doc and it depends on the person with fibro. So I wouldn't take that non-answer personally. Myself I am never satisfied if someone puts a symptom of mine or anyone else's down to fibro, but many seem to find comfort in "knowing" this. For a doctor and an insurance it is also a question where they draw the line for expenses. There just is no straight answer. The ACR 2016 criteria for fibromyalgia go more in your way of thinking (and mine) by saying even if fibro is diagnosed, other things should continue to be checked like you would someone without fibro. But the UK 2022 guidelines which are based on them omits that part, because .... it's expensive but also because the likelihood that it is something else is not particularly high. That's the same as not having fibro and a doc or insurance saying: We don't know, and can only afford to run a certain amount of tests and treatments that seem viable - a matter of good measure. If everyone got all their symptoms checked like I did (with 50 docs in 2 years), insurances would go bankrupt. (I however pay back my insurances by now having to pay for all supps myself and not needing to go to docs, because I'm as thorough with my self-treatments as I was in trying to get help from others. BTW, up to now, all those docs ended in almost nothing. What helped most was physios, then both recommendations that @sunkacola has pointed out above, plus finding out about all supps & exercises from websites, youtube, webinars etc.
Yes, new symptoms pop up here and there, but we always recommend getting new symptoms checked by a doc that is willing, if insurance is willing a 2nd and 3rd opinion. Or in my experience it's much more effective to get them checked by a variety of good physios. But whether you accept them or not is your own decision. If at all I dismiss doctors, I don't get dismissed by them. And I like the cheeky phrase some people use "I fired that doctor". They are your servant, not your master, even when they like like to be humoured like one (mine hardly did actually, they were all very human and humble, praps sometimes they think they're being clever, but if I think it's worth it I come back and prove them wrong).
I started feeling pain under my right rib cage. The pain was confusing. Sometimes I thought it was from my liver and sometimes just touching my rib hurt a lot. This pain lasted for months. I had blood work done...normal. Had and ultra sound done, a bit of fatty liver.
Rib cage might be costochondritis, exercises for that might help. But as it's only the right side, I'd see if Eric Berg's video etc. on "right sided fibromyalgia", meaning gall bladder might help. He's a functional doc tho, I don't know if you still have high hopes in mainstream medicine... 😏
 
Hello Jay,

Thank you so much for taking to reply with so much detail. It all makes sense. It just gets frustrating at times, especially why that pain suddenly just appeared and won't go away. I have watched Dr. Berg's videos many time about liver function, gallbladder, the digestive system, etc. Last night I was also watching another video that linked Fibromyalgia to mitochondrial dysfonction. I have all of the symptoms he talks about. I also do not have a gallbladder anymore. This fact makes things even more interesting for me. Thank you again for your feedback. Much appreciated!
 
Sunkacola,

Thank you very much for your feedback. Please know that the only reason that I said that it was a curse, it is just that sometimes I feel like some doctors attribute your health issue to Fibromyagia. I do try to care of myself and my health and do not spend my day worrying about it. I have just gone through some rough patches lately that manifested physically and got a bit frustrated with the lack of results that would explain my pain. I do agree that one needs to keep a calm and positive attitude towards it and do everything you can to keep a healthy mental and physical health. I will make sure to come back to this site for more info and support. Thanks again! :)
 
You don't mention how long you have had this pain, unless I somehow missed it. Sometimes I have pain near my rib on one side or the other. Typically, I attribute it to I accidentally pulled a muscle for strained something and it disappears within a week or so. Yeah, I get frustrated with my pain management doctor sometimes for not giving me reasons for the decisions that she makes, not giving me reasons for the answers she provides to my questions.
 
Hi Alakazou, 😄 , welcome to the forum! ☕🧁, oh it makes me so sad that "this" is still going on and fibro sufferers are still being treated this way 😔, yes a time when my body pain (epecially my legs was soooo bad (I went to the a+e) I saw a Dr, answered a few questions, (had some hits with a small hammer type thing) I was told at the end of it , it was in my head!, well me being me took it "literally" and thought it was head related! but he tried to explain to me that I was imagining it! (If that's not gaslighting , then I don't know what is?) He seemed more concerned with patronising me as a way to impress his young female colleague, (I felt sooo ashamed,) I didn't bring the pain up again for years and years later (then my drs sent me to rheumatology and I got diagnosed) I was also attempted to be put on antidepressants, anti seizures all kinds, but none agreed with me (caused more problems actually) I take gabapentin now (and try to avoid certain foods/drinks) sorry for your dog too (it's so heartbreaking when they go, they're like babies) hope you get all the answers and resolutions for what you need (also hope your m.d's will be respectful, cos it doesn't cost anything) hope your day is ok today too
🩷🧚🏼‍♀️🩷
 
Alakazou, I’m sorry to hear what you’re going through. I felt like I was reading a “clip” of my own life. In 2011, I was suddenly in severe pain, especially my legs. In general though, it was full body. I would sit and cry often before having to challenge going to work. Especially in the winter 🥶 time! I couldn’t concentrate at work. Had people asking what was wrong. It was less than pleasant. Today I still suffer, and was on pain medication which helped tremendously, but it’s tough to get it from a doctor, even pain management! My doctor weaned me off before she retired, and now nobody will help me because of the negative view on the opioid crisis. THAT is NOT me, I never smoked, never did drugs, I worked out daily and trained others for 27 years, drink socially but very rarely now, and I feel like I’m being punished! 😓😤😓😓 I’m being dismissed as if I’m a drug seeker. NO….. I just want some quality of life back! I was told to work out cardio for an hour a day, 6 days a week. That could “kill a fibro” patient (figuratively speaking!)
I was offered Lyrica by another pain management doctor who clearly could see that I needed to LOSE some weight now, not gain more! Plus years back my rheumatologist gave me Lyrica and it didn’t work. Neither did Cymbalta, Gabapentin, Savella, Flexeril, the list is endless. Currently on Paxil, Wellbutrin and Rexulti with Xanax for anxiety and depression. It helps, but fibromyalgia outweighs it all. I still suffer daily. I have my 3rd pain management appointment (which are SO hard to get ready for and get there) and I’m praying I get my medicine back soon so I can function at least 50-70% of the time. I’m sorry for all you went through with your pets, they’re my furry children as I never had the opportunity to have kids of my own. 2 abusive relationships plus I grew up with an abusive, alcoholic father so I was somewhat codependent and thought I could fix things, so instead of leaving promptly, I dealt with it. Instead, I ended up overweight, in pain 24/7 and cry a lot. I lost one of my favorite cats, a Siamese who was like my little human, to stomach cancer. My “good bye” to him was while he was on the vet’s operating table still under anesthesia and my vet called telling me it was the humane thing just to say my goodbyes there and “pull the plug” (injection to put him down)….. I never cried so hard! Again, I’m so sorry 😞 all you’ve been through and yes the doctors act like you’re there as a hypochondriac. It makes me want to give up trying but I can’t. Anybody else on opioid meds to get them through each day? I had the rib pain also. Sharp. Diagnosed with Costochondritis. It’s endless. I don’t even have the strength some days to prepare a Lean Cuisine. Mentally or physically. Fibromyalgia is nasty! People think you “look okay” so you MUST be okay! My anxiety is extremely high lately, and I feel lost as life is piling up on me. I’m on disability now too which took 5 year with a tough judge. I was blessed with that, but the income is not much.
 
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