My fibromyalgia diagnosis experience is exactly the same as yours. I feel your pain. I too was signed off from the pain clinic because i couldn't afford to take the time off work. Ironically from a job i was struggling to do and needed help and support to manage due to my pain. Now it's just about coping the best i can. My GP has been useless in supporting me. I always feel like i'm wasting her time. It's a very lonely condition to have without people around you who understand.

I too worked within schools and loved my jobs, it is sad when you have to stop work due to ill health isn't it. But when you don't sleep well, your in constant pain/fatigue/IBS/brain fog and all the other symptoms you become unreliable within the workplace and that's brings on stress too! I too live in a bungalow and it's been a lifesaver for me and I have slowly adapted my home/garden to suit me. We certainly go through a grieving process to get to the point where we can accept this new way of life and even then I have my days I'm in denial. Your story sounds so familiar, thank you. Xxxx

Thank you so much, you are an inspiration. Although we have very different stories, of how we were diagnosed, but the photo of before/after is me to a tee. Baby steps all the way.

Hi Nicola thank you for all of your videos especially your Fibromyalgia videos. Since I’ve been diagnosed I haven’t had much support off my rheumatologist but hearing your story and hearing about what you find helps on your bad days has helped me enormously. I don’t feel so alone anymore and i look forward to more of your videos :-)

Thank you for sharing,Nicola! I've suffered with chronic pain and everything that goes along with it since the early 90's. I started my nursing career at age 17,and when the pain issues really progressed I was around 28. My GP referred me to the pain clinic in the hospital that I worked at in Nov 2002 and thankfully they were so caring and really listened to me and what my body was doing to every aspect of my life. Here it is 20 yrs later and even though several of the doctors & staff have come and gone I still am a patient there & I see my wonderful clinician(s) every 3 months,or sooner if I'm having any issues. Sadly I had to retire from nursing(which I absolutely adore)in Nov 2019 at 54yo due to severe POT Syndrome & Idiopathic Dysautonomia,along with the Fibromyalgia,herniated discs in my neck,& arthritis and widespread spinal degeneration. My life has changed so drastically these last few years and if it wasn't for the love of my life,hubby Randy(who I met in HS when I was 15 & he was 17,& we're still going strong 42 yrs later!),my 2 wonderful sons,and loving support of my & hubby's families,I'm not sure I could of kept going in this journey calle LIFE. I'm so blessed to have found your channel & I just love watching your videos so much! Have a fantastic rest of your week,big hugs~Lisa💝

I know it’s a year since this video was posted but I had to leave a comment. I am in the states, I was sent to a pain clinic/education as well, only it was for 2 weeks. We had to sit through pain education lectures for a few hours, and then physical therapy and evaluations. I was on of the youngest ones there at 45 years old. I ended up being carried out by ambulances one day during pool exercises with all of my geriatric classmates watching. There were people going through what was actually a trial for various reasons.  It was torture. Now, at 54, I can’t say that it did any good at all.

I did the pain clinic course about 10 years ago before I was diagnosed with fibro. It was run by people who have not experienced this pain.

Hi N,

Thank you so much I have suffered with fibromalalgia and ME since 2019 and it's horrible, you're a prisoner in your own body!  The outer appearance is very deceptive so when people see you with your makeup on, and as you said we do it to feel better within ourselves.  But the daily struggle is real, I don't feel so alone hearing your story and knowing it's not all in my head! Thank you for your videos 📹 it really does help and make me happy 😊 wishing you all the best 🧡

Thank you for sharing. It seemed like we have the same sort of story. God bless you and your family ❤

Thank you for sharing ❤

Hi Nicola, found your video really informative, before my first appointment with the rheumatologist I got myself in such a state because I'd heard that some rheumatologist dismiss fibromyalgia  and I thought that was gonna happen just like it happened to you. But I had such a lovely rheumatologist and felt such relief to actually be told I had fibromyalgia, I think you explain your illness so well and wish you the best for the future, keep making the videos lol xx

So sorry to hear you're in a flare up. Thanks for the video!

Fab vlog niki.
This is why I have followed you for yrs now!
Because you make sense of all the jargon doctors chat! Uou spent so much time researching a d sharing your finds which has helped so many of us understand in a much uncomplicated  way .
Thanks for you do niki 🤗🤗 xx

Hi haven't been on ur pg for a while you just popped up. Love ur videos.

Thank you Nicola, appreciated your insights to this disease which I was diagnosed with last month.

I wish your story was unusual but everyone I know who has fibro has spent years going from one doctor to another being told there is nothing wrong, it's all in your head, you are tired because you've got young children, you are tired and in pain because it's the menopause, you are tired and in pain because you are in your seventies and it is expected. The medical profession just doesn't get it. I have had fibro symptoms since my twenties and now I'm in my seventies. I was diagnosed six years ago. Like you they gave me amyltripiline, gabapentin, etc and none of them worked. The side effects were horrific. I was then sent on the pain management course although here in the midlands it was a bit kinder than yours, it was one afternoon or morning a week for six weeks. You could choose whether you went morning or afternoon depending when you feel your best. The best thing I got out of it was the exercise in  the hydro therapy pool at the hospital. Unfortunately that stopped with covid but it was good while it lasted. The next best thing I got out of it was being taught to meditate. I thought that was a load of hocus pocus until I tried it and it does work for me. I discovered your channel during lockdown and it has kept me sane and entertained. You understand fibro and talk more sense than anyone in the medical profession. I admire how you keep going. It takes a lot of courage to keep coping with this disease. Thank you Nicola.

Hi Nicola.
I found myself nodding & smiling through most of your video. I too have fibro and chronic fatigue and like you had the struggle of getting a diagnosis and being treated like a fraud. Thankfully got diagnosed my 2nd time of being referred to a rheumatologist!!  Also got severe arthritis to add to the equation so I’m waiting for a new knee & new shoulder which given the NHS situation could be a loooonnnnggg wait! However, like you, I’ve struggled to work through the many years of pain & tiredness, but I’ve just had to admit defeat after my 5th bout of COVID (yes obviously god didn’t think I’d had enough suffering 🤦🏼‍♀️ he decided to add long COVID to the mix 🤷🏼‍♀️).  So am now waiting for ESA assessment, which I hope isn’t as flipping difficult as PIP!  

Anyway I just wanted to thank you for sharing your story as I know it will help people who are looking for answers and will resonate with others like me who have been through the struggle as well!!
Keep doing your lovely content and keep smiling
Jo ❤

Thanks for the video xxx appreciate hearing how you found out you had fibro

I hear you about the pain management course!  I live in Canada and the one they offered me was 4 weeks long, 9 am - 4 pm.  I couldn’t work because of the fatigue and particularly back and neck pain.  I had to pass.  Then when I applied for disability they used that against me for not “trying hard enough”.  If I could do that course I would be able to work and wouldn’t need disability!  In fact, if I had of gone I’m positive they would say “well you managed this program so obviously you can work. These pain management courses are not meant for people with fatigue, only pain.  The woman next to me in the info session had carpel tunnel.  The pain was isolated to her wrist.  People don’t understand that fibromyalgia is an illness.  You feel unwell 24/7.  I thought I was dying if a horrible disease when I started experiencing symptoms.  It effects your entire being.

Hello Nicola thank u so much for this video it’s such a true story it took so long to get diagnosed with fibromyalgia and it’s not a nice experience what we go through some doctors know nothing sorry u went through so much u r amazing the way u cope I am so happy I found your channel it helps me a lot thank u so much take care keep smiling c u soon uk 😀😊