I have been following this page for a few months now and feel I can totally relate to you all🤒 the trouble is I feel like medical professionals are not listening to me. I just wondered if any of you were misdiagnosed and if so what with?
I've had chronic fatigue for over a year, doctors checked iron and lots of other things several times over the year... initially they said depression but I wasn't feeling low. I have osteoarthritis and hypermobility which was diagnosed 3 years ago. But in November my body had a flare up worse than I've ever had. I can't pin point the pain my full body feels in pain. I was put on 90mg of duloxetine to help with pain and amitriptyline 20 mg to help me sleep. I get so tired I'm off work on the sick just sleeping and resting. My brain fog is terrible, I forget everything! I went to a rheumatologist today who x-ray my joints but he said it's not arthritis everywhere just my knee. He said I've got hypermobility and has prescribed some other tablets for me to try. He has taken loads of blood to check for everything. I feel like I'm banging my head against a wall as I'm in so much pain 😐 every symptom I have brings me back here. I just wondered if anyone else has experienced something similar? I'm 37 years old and feel I'm broken 🤧 I get comfort from your posts on this thread so thanks for that 😊x
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Nutcracker
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Almost identical to you! Hypermobility was number 1 for a few years as had injury like pain in my wrist, ankle and back. My GP sent me to Rheumatologist who diagnosed...... Flat feet. Yes, flat feet was the cause of all my issues 🤔
My GP wasn't happy with that so sent me for a second opinion with another rheumatologist. He looked at all my previous results, checked me over and diagnosed Fibro in 30 minutes.
Thanks for the fast response! I have the opposite to flat feet and mine are too curved! Im at my doctors friday so will have to speak to her. The rheumatologist today said something in my bloods from before was abnormal but didnt explain what. He just took loads of blood to test for more things.
As if you had a fibro diagnosis so quickly, just goes to show not enough medical proffessionals are aware of it. Or have enough knowledge about it as this Dr did not even mention it. Surely it's not normal to have to have a nap after work to be able to cook tea and function. I feel like I'm coming down with flu aching all the time. I sit at work with hot water bottles all over me to ease the pain
I'd never heard of Fibromyalgia before I was diagnosed. It was a huge releif to know it wasn't in my head but also quite scary to think this is what my life will be like.
If you fill like you have flu all the time that is how I felt when we had M.E and the never ending tiredness not helped with sleep. But on top we had Fibromyalgia and Doctor tested that by giving me magnesium shot as pain went away he said that showed I had Fibromyalgia on top of M.E.
Thanks Bobby3, I haven't heard of that before. Is that in the UK? Were you mis diagnosed before you found out? I feel like I'm cracking up and it's all in my head as I don't feel like I'm getting anywhere.
When I first went to my doctor I had depression ... then I took a kidney Infection and all I done was sleep ... for a year I had blood tests every Monday and was told my haemoglobin was at 9... it stayed that way for over a year and I was on iron tablets and vitmanB .... he told me I had chronic fatigue and he couldn't give me anything for it .. after a year I went back and told him I can't live like this ... and what with the pain also . So eventually after 18 months I was sent to rheumatology and was diagnosed with Sjögren's syndrome which attacks your glands makes you fatigued and causes all over pain .... but after about 6 months my doctor said to me that I had fibro. And I said no I have Sjögren's that's why I'm in so much pain and sleep so much and he said no it is fibro. My problem at minute is trying to get rheumatology or my doctor to commit to helping more as each day to ask each of them .....
It like a losing battle . They have put me in medication for pain for my under active thyroid my depression my acid reflux but they ant address the fibro between them....
If you find the right person and the right encouragement and support I think you would feel better.. as would I and many. Others ....
Hi, I know exactly what you mean about doctors not listening to you. I spent years seeing GP's and returning home feeling like " they all think I'm a hypocondriac." I have found that arming myself with knowledge before seeing a doctor sometimes helps me to get answers. I have the luxury of being a nurse, so I understand most medical terminology and know the side effects of most drugs. It is really hard at times and I expect we all feel like curling up under the duvet and pray the pain will disappear, never to return. Research needs to determine a cause for this debilitating condition. This type of condition is not taught to medical students and is probably why few of us get any satisfaction when we visit our GP. The only reason I got a diagnosis was because I saw a locum doctor who had recently had a placement in Rheumatology and was interested in the subject, therefore he was knowledgeable about my symptoms. I think it was just random good luck that I saw him that day and he immediately referred me. It's difficult but you have to persist until you get the answers that feel right. I have joined this group for support as I don't know anyone else personally who understands. Maybe our discussions will stumble upon a cause for fibromyalgia by finding a common denominator. Never give up hope, it is what keeps me going. Take care. Xx
It seems that the established doctors don't want to know about fibro, and therefore don't listen to us, but if we see a young locum, they are more knowledgeable and get things done! The only problem is that we don't see them again, and it goes back to square one, but at least they can start off the investigation into getting a diagnosis. Take care 🤗 xx
Hi i can sympathize with you i was much like yourself December2015 i started with back pain but as we do i just carried on maybe about6 weeks and then it came to a head in work i went straight to a&e was xrayed to be told i had fractured my ribs4 of them down my back said they were a few weeks old so took some time off never experienced pain like it went to doctors every week telling her that the pain was so severe i was a shadow of myself so blood tests ruled out the big C the weight was falling off me and i kept saying what about osteoporosis to be told no too young i was49 but wouldn't get a bone density scan until i was50 so july2017 i got my scan 4 ribs were still fractured and a smashed vertibrea the lovely nurse said to me you have osteoporosis and osteoarthritis double whammy i have the body of a 75 year old woman i am 51 will never work again still in pain some days worse than others on gabapentin ammatriptilene sertraline androlic acid so dont give up keep pushing for answers and good luck take care x
Hello, simply had to get In Touch with you as I too gone though similar to you. Mine all started at 27, just having giving birth to my daughter. My early 30’s was told I had a skeleton of a 70 year old. 30 years later, & 31 surgeries am still in pain but still managing to walk, talk etc. It hasn’t been easy but what I want to say to you is this, I have still managed to enjoy my life. I even found the strength to divorce my horrible husband!!! There are always new drugs becoming available, new doctors, new treatments. So don’t give up, keeping positive and I wish you good luck for the future
It took me years to get a proper diagnosis.. I was born with my conditions.. And the whole time I was made to I was making it up or my symptoms were related to depression (which they weren't).. My doctors only started to listening to me about 5 years agos (im 37) when they started seeing the damage in black and white.. My xrays and mri started showing up the damage of long term hypermobilty.. Since been diagnosed with eds 3.. fibromyalgia and disc/spine problems.. And a whole list of other health issues..they still don't know what to do with me.. I Usually get sent to physio when they have nothing to offer .. and it doesnt help I can't take medication..(gastric issues) but my advice is to write down your symptoms like a diary and how they affect your life.. and if there's a particular specialist you want to see.. Which you think might help get a proper diagnosis.. Tell your gp you want referred..and don't take no for an answer.. Hope this helps.. Good luck 🤞
Hi there Nutcracker and welcome to our very friendly group. by the way i love your name
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I have had fibro for over 30 years and i am still banging my head most day in frustration by the lack of understanding by a lot of people in the medical field. I am sure we can all empathize with what your going through.Thankfully I do have a very caring GP i'm very lucky to have her.
You may like to take a peek at our main site it has a wealth of information you may find helpful. fmauk.org I am glad you stopped been a reader and became a writer. I think everyone can benefit from been part of a group that has so much support and experience to offer. Not just to new members but too each other. I hope you have a very pleasant evening. If you need any help with any thing please ask any of the admin we are always happy to help if we can
Yes I went through similar thing as you are going through. This is a rule everything else out before diagnosing CFS/ME and fibromyalgia. Well I had what I called prefibro symptoms in my late teens and 20’s during college before being diagnosed with fibro and CFS when I was 33. Depression was one of those misdiagnosis given antidepressants which helped the mode but not the symptoms of pain, fatigue and feeling like something was off. I’m now in my 50’s and have learned over the years that fibromyalgia is a lonely disease which likes to invite other diseases to join in on the party.
Hi, things started kicking off for me when I was 36. Started. With horrific tummy pain. Then came diabetes, tendonitus, psoriasis and pain all over. It was like exaggerated pain. If I knocked my hand against the door or something, the pain on the scale would be like a 6 where normally it would be like a 3. To cut a very long story and list of problems short. It took about 5 years to be told by the pain clinic consultant i have fibromyalgia. Decided to move from hilly Cornwall to Leigh Gtr. Manchester where my parents moved to years ago. Getting more and more different symptoms. Eventually i got to see a neurologist where lucky for me he specializes in M.E and M.S. I had a short medical and found out I had know reflexes . My legs and ankles don't lock so I fall a lot and balance is terrible. He diagnosed me straight away. Out is M.E and he was 100% sure I don't have to go to rheumatology. All together it took 7 years for a diagnosis and while I stayed in hospital every time they done ward rounds, it would be a different doctor with a different diagnosis .
Hello Nutcracker, I'm going over my site here, and re-visited our posts together. I am wondering how you have been doing. I hope all is going better for you.
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pain pain pain and getting passed from pillar to post , i need a diagnosis :( so depressed now 
?diagnosis
no diagnosis
How do I get a diagnosis/ assessment and what does it entail?
