My Fibromyalgia Diagnosis Story
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- เผยแพร่เมื่อ 22 ก.ย. 2024
- If you ask anyone with Fibromyalgia about their diagnosis, there's always a story to tell. From taking years to get there with multiple tests, to Doctors, friends and family members not believing you; it's never easy! Although my diagnosis came quicker than some, I still had to fight for it. I hope that by sharing my diagnosis story I can give both those waiting to be diagnosed, and those who have never even heard of Fibromyalgia, an insight into what it's like.
DISCLAIMER: I am not a medical professional and therefore not an expert in Fibromyalgia. Everyone suffers and deals with Fibromyalgia differently and this is my story. Although I am dismissive of some Doctors in this video, I have every respect for medical professionals and am so thankful for the NHS and all that they do. I just wish there was more sympathy, research and understanding when it comes to Fibromyalgia.
I'm so glad you finally got diagnosed with it. It took me about 6-7 years to get diagnosed by a rheumatologist. I went to so many doctors about my pain and so many dismissed me, told me to lose weight and that it was all in my head. Then one day I went to one of the doctors at my local surgery and I told him that i would still feel pain for minutes after if someone lightly grabbed me or touched me and he suggested fibromyalgia, referred me to a rheumatologist a few months later I was seen and diagnosed there and then. Being diagnosed just gives you a sense of relief that it's not in your head. I'm forever grateful to that man for listening to me when so many others didn't.
Your symptoms are just like mine, especially the chest pain. I find that so bad as I feel as though I can’t get my breath. I have had heart checks and lung checks and they say everything is ok, but so often I am gasping for breath. Do you have those symptoms? I have been suffering for 25 years, with no real relief from any treatment I have tried. Swimming lengths is the only thing that gives me a little relief for an hour. The water is so gentle on the body. I used to do Aquafit exercises, but I can no longer do that. It just exacerbates my pain. It is just such an overwhelming and debilitating disease. It ruins everyone’s life who has it. Thank you so much for your video. It took me ten years to get diagnosed. My doctor sent me to a psychiatrist who said I as obsessed with my health. I finally found an integrative doctor who diagnosed me within five minutes. It was such a relief to get a diagnosis,never though there is no cure for it. Love and hugs to you and all with this. Give yourself lots of TLC and surround yourself with things that make you happy and only positive people. ❤️🇨🇦❤️🇨🇦❤️🇨🇦
This is exactly how I feel! For over a year I have had shortness of breath with chostochindritis, muscle aches and headaches. I brought up fibromyalgia to 2 different Drs and they all ignored me. I do have asthma but I think it's fibro that is giving me shortness of breath bc I am on 2 different asthma meds and never had shortness of breath like this. Thanks for sharing!
Thanks so much for sharing your story! I've had fibro for 25 years and felt very alone for much of that time because no one had heard of it or believed it was real. It feels so comforting to hear your story and to know there are others out there suffering with the same thing.
I agree .....for years felt so alone in this illness ! Thank you for sharing ❤
I had fibromyalgia over five years now.
Believed to be triggered by car crash was in.
Like you I went back and forward to so many doctors.
Eventually in end I was referred to rumerloglist and diagnosed with Fibromyalgia.
Can relate you so much.
Can hear how raw it is in your voice x
I think I might have fibro, I'm not sure but reading about it it would explain a lot and I do have it in my family. I do have other things too tho and trying to get diagnosed and treated for those things I have also experienced getting dismissed, not believed and ignored and it felt like it was bc I was (and still am) a young woman. An overweight young woman at that with depression so I felt like nobody listened to me. I never gave up until I met someone who could give me the answer and treatment that actually did something. It's unfortunate that people get dismissed or forgotten by the medical system in so many countries but the reality is that the more you educate yourself and persist you will find someone who will listen and help you. For me it took a long time bc it wasn't long ago that I was a child, I'm just barely hitting my mid 20's, but it was worth not giving up. I'm sure in the future, with more studies and new developments in treatment these unhappy encounters will disappear and people will get the help they need sooner.
Even though it’s not what you want to hear, it is a relief to finally get the diagnosis. I was diagnosed in 2013. Prayers for all of us suffering with this. Find out what helps you feel better. For me it’s heating pads, pain meds and rest!
I totally agree. It's not great news but you finally have an idea of what is going on and what you're dealing with so you can start fighting back. Plus, it's just a relief when you've spent so long fighting for an answer after so many dismissive doctors appointments!
And yes I totally agree with you. Heat, heat and more heat! If it doesn't burn, it's not helping me haha.
Sorry for my slow reply and thanks for sharing. I hope you're feeling as well as can be and sending you gentle hugs xx
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My fibromyalgia started in between my 8 ear surgeries, surgeries 6-7 were back to back and I started getting severe leg and back pain. To the point like you, my arms felt so heavy that days I just couldn’t wash my hair or even brush it. My intense fatigue comes and goes, same with my depression. I’m on meds for depression which have helped huge. Currently on Cymbalta for fibro pain,. I get attacks at least once a month and they last always two weeks. The insomnia is brutal. And I’ve tried swimming which cause my muscles and bones to lock up and then in severe pain. No longer can lift weights as my muscles get tired extremely quickly,. I do have a neurologist and he’s wonderful. My fibro has caused more issues tho the older I’m getting, trouble voiding (peeing) when I’m in so much pain plus I retain fluid in the evenings and have to self cath myself. I wish this disease was more open and talked about. It’s so hard to deal with. Thanks for your story. Sending my love to you, ❤️
Hey. Sorry for my slow reply. Oh my lord yes the insomnia is dreadful. I don't remember what a good night's sleep feels like anymore! If anything, I function better on little to no sleep now which is bizarre!
Isn't it strange how fibro can stsrt so differently for all of us? I wish there was more info on the cause and would be lovely to have a cure too wouldn't it?
I'm sorry you have such a hard time with it. It really is such a horrid thing to live with but because it's so misunderstood or unheard of, so many people don't understand what we go through. Like you say, if would be nice to see it talked about more which is why I try to be so open with my Fibro, both on the Internet and in person. I'd say a good 90% have no idea what it is when I say I have it which is mad. Even I didn't know about it until it was a possible diagnosis!
Sending you love and gentle hugs. I hope today is as well as can be and thanks for sharing your story with me xx
I feel the same way that I wasn’t happy about the diagnosis, but I was relieved that I finally knew what it was. I had to advocate for myself every step of the way and I’m just at the beginning. Thank you for sharing your story.
Thank you for sharing your story, my story is the same as yours so I understand your ups and downs and the relief of getting answers to the suffering.
I saw a rheumatologist over 5 yrs ago after test, blood test etc I was diagnosed with fibromyalgia arthralgia n also lupus.
Thanks for sharing. I have been battling fibromyalgia for about 15 years and I’ve felt same way. Do what feels best for you. Never give up!
I really empathise with you. I have Fibromyalgia and Sleep Apnea. Can’t do much at all. Hoover one day, dust the next day and conserve the batteries. The GP had said to me that he reckoned it was Fibromyalgia but wasn’t going to diagnose me as didn’t want to label me. Not helpful. Finally diagnosed by Rheumatologist. Be kind to yourself 🙂
Hello
New Subscriber Here From Amman Jordan Middle East
Thank you for your honest open information
Best wishes to you
Thank you so much! Best wishes back to you!
You sound like me, doctors just kept saying, the tests are negative. You're fine. No I'm not, also I. Look for people like us all the time.
Thank you for sharing. You are so strong and courageous. I suffer from Fibromyalgia + Spinal Stenosis + Ankylosing spondylitis + asthma + sleep apnea + diabetes. For 13 years or so. So I can relate to your story especially when 12 + more doctors can’t seemed to help me only to tell me it’s in my head and I have to deal with it my own way along with the meds. Not fun! My G.P. has lost faith in me and even now he doesn’t want to see me, so I’d been passed on to see other doctors. I feel alone. Hopefully Christ Jesus will hear my cry for help somehow. I was due for neck surgery back in December 2021 then postponed to March 2022 and still hadn’t had surgery. The Surgeon has ignored my calls. I have no idea what to do now? Any how. Thank you for sharing.
You got offered Physiotherapy. They never offered me this. Will be getting on to doctors thanks for sharing x
Thank you for your story.
Thank you 💜
There must have been something nasty going round in the UK in 2017. I had a chest infection in Jun 17 and never got better after that. I was coughing for 2 years solid and constantly brushed off by GPs. I've had a great career almost destroyed and its taken nearly 5 years to get diagnosed with Fibromyalgia. Also tougher as a bloke because most of these autoimmune conditions are more prevalent in women
I totally agree. It's hard enough being a female with Fibromyalgia and being heard but for men, it is so much worse. Just because it's less common doesn't mean it doesn't happen! So sorry you have to fight so much more!!! It's so frustrating having to fight to be heard isn't it? You know your body and how you feel and I almost went mad when the kept telling me I was just stressed and/or depressed. You almost start believing it!
How strange but weirdly comforting we both started our Fibro journey in the same way! Haha. Definetly something dodgy going around!
Thanks for sharing and sorry I am so slow to reply. Hope you're keeping as well as can be!
aww thank you so much for sharing your story! You were so cute, i could've kissed her! 😅 i'm currently in the uphill battle of trying to get a diagnosis myself. this proves i can't give up
Thank you so much! I'm sorry you're currently fighting for diagnosis! I know it's not easy at all! Like you ay, just don't give up! I know it's so hard! There were loads of times when I wanted to give in or felt like I shuld because so many Doctors made me think it was just in my head but you know yourself better than anyone else does and you know what feels right and what feels wrong. Trust yourself and keep going! You've got this! I hope you get some answers soon! Also, so sorry for my slow reply! Hopefully in the time it's taken me to see this message you may have actually gotten some answers!xx
10 years took me to get diagnosed with fibromyalgia crushing fatigue pain and more
I was diagnosed in 2016.. mine was due to my sexual assault trauma at 14
I think we get excited because we think if we know what it is then we can fix it! then you realise it’s a chronic condition you just need to live with. 😳☹️
New subscribers here from Australia 🇦🇺 Also fibro too
Thank you! Sorry you're a Fibro Fighter too but we're a tough bunch! Xx
As a massage therapist for 24 years, I never had an client who told me they were diagnosed with Fibromyalgia, that did not have "Hyper-mobility". Are you sure you don't have Hyper-mobility?
I think I have this but I don't have the chest pain
Your symptoms can be totally different. I never had chest pain either. Everyone’s experience with fibromyalgia is different. That’s why it is so difficult to diagnose.
Hey! Sorry for the slow reply but as Debbie says, everyone symptoms can be different. The list of symptoms you'll find on medical sites is a start but it's not a check list. Again, as Debbie says this is why it's so hard to get a diagnosis as we all have different symptoms but also because so little is known about Fibromyalgia. There is no known cause and sadly, no known cure.
I have fibro I am at the end of my rope
I feel you! It's so hard sometimes but there are good and bad days. It doesn't seem like the good are coming sometimes, but I promise they are! Look after yourself and sending gentle hugs xx
They never got a chest x-ray, seriously?
I know! Considering I'm asthmatic and have had plenty of chest infections befor you'd have thought I'd have been given a chest x-ray a lot earlier! I'd say it was at least 2/3 months before they even entertained the idea despite me going back weekly complaining of chest pain! I think it's because my chest sounded clear when they listened to it?