My Fibromyalgia Story!
ฝัง
- เผยแพร่เมื่อ 11 ก.ย. 2024
- As I said, I had uploaded a similar video before but it has disappeared from You Tube, so I made another one! This is more updated too so gives you my illness up to date too. Enjoy and see you next time!
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Fibro sections: • Fibro sections
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 Sam! I am so glad they help. 🙂
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
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.
@@amymarie120 it certainly is which is why I started this channel to try and help people like me when the professionals can't. Have you looked into other GPs? My current one is great but my old one was rubbish! 🙄😊
Gentle hugs and heartfelt prayers from Texas.
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.
@@ashatan4554 it certainly does! You have to re think everything you do. The pain management course was so hard and I had so many meltdowns during it and don't feel it benefitted me at all! They said you HAVE to attend even if you are on a flare up! Crazy.
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💝
Thank you for sharing your story! I am glad your pain clinic seems more invested than mine was! 🙄🤦♀️
@@LordandLordettessame here do you have hypomobility
@@Truerealism747 not that I am aware of!
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
I am so glad you had a good experience! Glad you enjoyed the video! 🙂
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 🧡
Ah, thank you Christina. It is a struggle but you are not alone! I am always at the end of a message on my social media! ❤️
I'm just after watching your video nicola I was at doctors and I had this terrible burning pain on my right side she said it was Fibromyalgia and I have health aniexty aswell I worry about my health badly
Hi Nicola interesting listening to you. Your positive attitude is amazing 👏. I finally got a diagnosis 2 yrs ago along with Sjogrens syndrome. I really struggle most days. 😪 but watching your vlogs gives me hope 😘
I'm so glad I give you hope Maureen. One of my other subscribers Irene has Sjogrens too. I will get her to see this message and chat to you. 😘
Hi Maureen I too have Sjogrens along with Hashimoto's, Fibromyalgia and CFS. Sjogrens was my latest diagnosis about 2 years ago and I feel I have become worse within this time with pain and fatigue. It was a shock when I was diagnosed but I knew deep down there was something else going on in my body. If you ever need to chat I am also on fb. How do you feel about your diagnosis? Xxxx
@@irenes6627 hi good to hear from you. I am honestly so confused by it all. Seem to have constant pain and no one can tell me if its from the fibro sjogrens or arthritis!!! Or a combination of all 3. Also the dryness and dry skin is horrible. How do you cope? X
@@maureenandrews7151 yes your spot on we never know what's going on and we like answers do we! I think my joints pain is from Sjogrens as I didn't have that pain when I became initially unwell with Fibromyalgia etc. Yes the dryness is everywhere isn't it lol. I do have a CTD nurse I can speak to via Rheumatology and she sent me literature etc so I could understand how Sjogrens works. It's a connective tissue disease so yes it's very painful. X
Thank you for sharing. It seemed like we have the same sort of story. God bless you and your family ❤
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
You are so welcome Bev! 😘
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 😀😊
Thank you Jackie. 🙂
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.
Thank you for your kind words Esther. Yes it is a cruel disease. I am just so happy others have felt I have helped them in some way. Your pain management course sounds a lot more manageable! Ours was like boot camp! 🤦♀️
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 ❤
Ah, thank you Jo! 😘
Thanks for the video xxx appreciate hearing how you found out you had fibro
No problem!
So sorry to hear you're in a flare up. Thanks for the video!
My days Nicola your story is so like mine ... I was a TA in a school mainly for SEN children, been there 11 years. In 2010 I started with hip pain...went on for years had gabapentin, oramorph, tramadol and many more pain relief products, and yes been on that pain relief course, tried to sit on those hard chairs, wouldnt do another one for sure . in 2012 I had an op to try to sort hip out but I've been left with severe pain ever since!! I had to reluctantly leave my job. A Dr recently seems to think I may have fibro but as of yet not diagnosed. I was told by one GP that there was no test for fibro when I asked about it years ago. Needless to say still in chronic pain this ruins my life but no real answers.
Is the pain you feel in your hip or everywhere? It's devastating to leave our careers isn't it? 😔
@@LordandLordettes the pain is everywhere I've been diagnosed with arthritis in my hand and knee ....going through process now elimination before I get an op the either fuse or remove a bone in my hand and a knee replacement. I have chronic insomnia and pain in elbows, shoulders, head, back and feet. it is devastating to leave a job you love to do nothing but 3.5 stone on!!!! it's a lonely life really x
@@maltesecross2056 it can be at times yes. I just feel lucky to have all of you! I am also lucky to have the support of my family. Hope you get somewhere with the ops etc. 🤞❤️
@@LordandLordettes 🤞🏼
First time i have watched your video. I have been a sufferer of chronic pain from an ankle injury for over 10 year. But recently after losing 3 family members so close together. I started getting knee pain. Told was degenerative meniscus tear. Then developed hip pain in other leg. Now i get arm pain. I also am a IBS sufferer. I am on morphine. And pain patches. I did pain clinic and they gave me a tens machine. All these things and i am still suffering with walking and sitting. No one has said fibromyalgia. I feel it is due to the trauma also off the grief i suffered and am still suffering. It all started then. I don't no how to cope with daily pain much longer. Or how.to get a doctor to even think this could be fybro. Thanku for your video. It made so much sense.
Check if you have hypomobility CFS 27 years fybromyalgia 7 now diagnosed autism ADHD genes for it
There’s a lot of similarities with myself, some differences too. Thanks for making this, Nicola. Feel very emotional. I will be sharing it ❤😀 xx
Thank you so much Emma! 😘
Hi Nicola I really enjoyed this, hearing your fibromyalgia/ME story. I’m currently on the waiting list for a pain clinic and was wondering what happens if you’re on a flare up. I can’t believe they just expect you to attend regardless and that it’s all day! I’ll obviously see what it’s like and go with an open mind but my god yours sounded awful.
Anyway love your advise and the way you explain things. Looking forward to your weekly upload
Sam ❤
Ok, are you waiting for pain management clinic or pain management course? As the clinic will just be an appointment to discuss your current pain, meds, ways of coping etc. The course is different and can last a week.
@@LordandLordettes hi I’m waiting for the clinic I’ve been on the list since June so no idea I’ll be waiting for! I’m honestly not sure if it will be help if they just talk to you about it. I’m seeing a therapist to help with daily life. I do have a supportive family, like you so I’m lucky there. I’m just constantly fighting with doctors over pain relief. Mine will just about give me a low dosage of codeine phosphate, if I’m lucky! They don’t like giving out opioids now. Luckily I have a friend that gets them handed out like sweets so she passes them to me. I’m now off work after getting Covid back in February and basically it’s just made everything worse I’m also waiting in PIP but not holding my breath. Seriously though your channel really does keep me going so thanks for your laughter and great advice 😀
@@samwilson8114 no problem! Glad to help and entertain! 😉 I reckon it will just be an initial appointment then. Not everyone is offered the course so see what they say.
l love the blog very interesting information and well done for being very positive its not easy when you are in pain l know because l stuffed with the same condition plus other conditions .but every day l
is different day and we do try our best thank you for sharing lovely person ❤
You are welcome Julie 😘
It’s 2am here in Florida. I admire you so much. I also have a background with children and have my last 11 years before retiring to their care. I also have dreams about them a lot. I think my Fibro was brought on when at 18 my child and almost died with the breach birth. It’s hard you know when people just don’t care to understand that it affects me now. Bless you and your family. Have you heard about the effects of the vagas nerve in the brain and how it and Fibro are related?
I have heard of that nerve will look more into it. Have you had counselling for your past trauma?
No I haven’t. I should. I would like to, it just never happened . Thank for responding.
@@vivianpennington5330 it would definitely benefit you to have counselling if you can.
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.
Just stumbled on this video.. I am partially diagnosed….🤷♀️
I have Hypothyroidism so get periodic pain ( joint ,headache stomach ) so didn’t pay much attention..and then I had Gallstone surgery…it was a struggle apparently to remove them,and I got a wound infection.. after that my symptoms got worse ..terrible back pain upper and lower, stomach issues,breast and rib pain sore to touch on my breastbone area..etc etc..🥴that’s when I went to the doc..
She was in her words 95% sure it was Fybromyalgia..I say was .!!
She asked what my symptoms were…nodded a lot asked me some questions…did my lymph nodes swell, ? was the pain constant, ? did it get worse after stress or strenuous exercise..? and other questions..
I answered yes to most ..
She did bloods to rule out lupus MS etc..Negative
She was going to refer me…and then …..!! my mum was diagnosed with Lung and secondary bone cancer…I didn’t have the head space to deal with my issues so left it… fast forward 18 months Mum , had passed and was I suffering quite badly …considering going back. Covid hit and my Doctor was one of the ones sadly to die with it.. 😢
Put paid to my competitive Ballroom and Latin dancing.. 😢
So still formally undiagnosed…
Got what I’m sure is Costochondritis at the moment..started with pain under my armpits, and side of breast and it’s moved all around my ribs under the breast line..feels like an iron band being tightened….anxiety through the roof… seeing your vlog was like a light at the end of a tunnel.. Thank you.. 😊🏴🇬🇧
So sorry you have gone through all of this. Please watch my other Fibro sections as they might help. There is one on costocondrosis too. Do you have another dr now you get on well with?
@@LordandLordettes I’m in a practice..but I’ll be honest the health anxiety stops me from going back.. I convince myself that it’s bloody cancer .even though the pain comes and goes..which cancer pain wouldn’t…. It’s daft I know.. 🤷♀️😊🇬🇧
Ps I’ve subbed..😊👍
@@Ionabrodie69 it's not daft! Maybe someone could go with you?
@@LordandLordettes I’m not afraid of going on my own.. it’s just going ….!!! 😂
Thank you for giving your story again. I enjoy your channel so much
You are welcome Lynne! 🙂
Hello! Wow! Buying a house at 18! Well done! May I say that your hair and makeup is lovely. Beautiful. Love from Elizabeth (Bess) in Yorkshire x PS I also have fibro and I am in the middle of a flare up. 🙂
Thank you! I know, we were very lucky to buy a house at 18, something we couldn't do today! Hope your flare eases soon. 😘
@@LordandLordettes Thank you. It is easing a little. I always need 9 hours sleep a night! 🙂
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.
Really interesting hearing your story, I always assumed you got ill when your youngest was a baby or a toddler but I’m not sure why I assumed that, but anyway, I’m glad I know the full story now, I feel like I understand you more now 😊
That's one thing I am so grateful for that I didn't get ill until my girls were older. But then it was hard for them to cope with so they had counselling. Fibro has a lot to answer for.
Hi Nicola,
Thankyou so much for all your videos I find them so interesting and informational...Iam going through alot right now ...been off sick from work few months now and I feel awful..I have endometriosis stage 4 and now gp and paramedic think it could be fibromyalgia and so do I..I've worked all my life till now ..as I can't take the pain anymore.and today I have my pip assessment.. finally as well you know it takes it toll on your financially to..So thankyou for all the advice to very much helpful
🙏🥰
@@cristinaluppino575 I do hope you get your pip! X
@@LordandLordettes thankyou so much 🙏
Hi haven't been on ur pg for a while you just popped up. Love ur videos.
I got diagnosed with fibromyalgia this July I've not had any good days yet the pain is horrible got my first physio appointment at end of the week I've just been loaned a chair trolly and a bed rail and a bath rail to help make things a bit easier enjoy your videos on your story x
Check out my other Fibro sections they could help. My main advise is to listen to your body, rest when you need to but move too and look after yourself as a whole! 🙂❤️
So I was diagnosed at the age of 21 .. leading up to my diagnoses when I was 14 I was sexually assaulted and it was going on for 2 years.. During my first year of recovery period in 2012 at 17 I was feeling pain in my leg and I thought I was dealing with soreness from new work out.. I started to feel the pain even worse. We did test after test like ultra sound x rays .. It was going on for years finally in 2016 when I was 21 I was diagnosed with fibromyalgia.. my doctors said it mainly caused by my emotional and physical trauma of my sexual assault .. I am older now and I have learned to deal with the pain .. But it’s worse when I get a cold or the flu it starts to flare up . Alot of people who don’t have it would never understand the pain I go through everyday. I am also diagnosed with ptsd autism and LD and anxiety and depression .. whenever I get a cold or the flu I have a tendency to get complications and flare ups .. people would judge me for that ..
I'm on my own and can't find anyone to help me with my pain not just from fibro but also from my dystonia. I've been in so much pain for so long now I feel like I'm at the end of my rope. It's nonstop 24/7. And I'm getting about 2 hours of sleep a night.
Sorry to hear that. Do you have a clinical professional who you get on with?
@@LordandLordettes my doctor would do anything to help either she just keeps sending me a a pain doctor which haven't helped me and took me off the medication that did help a bit.
@@DisabledandPrepping it's so good to have a dr you trust.
when you go to your doctors do not wear makeup let them see how bad you look that way they will believe how bad you feel.
Why!!!
@@jillfortune1790many doctors do not believie that you are sick, so when they see you with no makeup that shows them how you really feel because they can see it on your face.
You probably already do but have you tried probiotics?
The brain and gut are linked together, if one goes wrong so does the other.
When the brain is effected by the gut it effects your pain receptors, vagus nerves etc.
Everything is linked.
I had a nervous breakdown in 2020/2021 and I had chronic pain and fatigue and severe gut issues, As soon as I dealt with my traumas and took probiotics etc the pain subsided and now it’s when I’ve had a bad week that my neck, back and hand pain comes back.
It’s also worth listening to dr John Sarno on TH-cam.
Yes I have taken probiotics every day for a long time.
Hi Nicola
New here
Not yet diagnosed with Fibro but after research and speaking to several people with it . I think I have it!
I have been too the rheumatologist who said
“Oh if could be that but I’m not convinced”
I just want a diagnosis. Like you say I don’t want to have it but I want to know if I do .
X
@@jessicahall3422 hi Jessica, it can be tricky to get a diagnosis. Usually it's after 3 months of unexplained pain but my rheumatologist was also reluctant to diagnose me so the pain clinic did. Maybe go back to your GP to discuss with them?
@@LordandLordettes
Hi ya yes I’ve been referred to pain clinic so hopefully that will help
Thank you x
I read that having a bath is better than a shower for fibro. I have fibromyalgia and I am in a flare up right now.
If u r disabled bathing is impossible
hi i have severe fibromyalgia very embarrassed and sad have brilliant doctors, but constantly told that I am lazy and I will be fine 😭
Who is telling you that? Whoever they are, are not worth your time or energy!
What medication do you take please
Just in. Dr just prescribed Savella for me . Haven’t picked it up from pharmacy yet. Just wanted to know if you have ever taken it and did it help? Thanks for all your help. 🎃
Not heard of that one! Hope it helps. 🤞
Thank you for your channel. YOu area great!!!
You are welcome! 😘
I have all of the above and understand everything you have said. Insomnia is also really bad in my case and when I do sleep I have terrible nightmares. Does anyone else have this? Is it a fibro thing or possibly a side effect from the Pregabalin that I take?
Oh my goodness yes! I suffer with terrible nightmares every night. I dread going to sleep! I think it is a side effect from medication but mine are worse when I have a lot on my mind!
I'm crying right now! You understand me!!!! It is so hard when noone else gets it. I am so fed up with pretending all the time that I am ok...when I am soooo not. Thank you for understanding me❤
@@jasminphillips6888 sending a big hug! You can always contact me through Facebook or Instagram DM if you need me! 😘
Hi Nicola I suffer with ibs and chronic pain with arthritis in my ankles I also have a hernia so I’m not aloud to lift anything I don’t work because of my condition and I hate it xx
Yes it's horrible. You tube pays peanuts so I feel useless most days and constantly wonder what job I could do! Xx
@@LordandLordettes I keep looking for a job but I just don’t know who would take me on with not being able to lift anything x
@@emmasifi5979 it depends what you want to do. You would need a sit down position? I keep looking at working in a shop but I couldn't do the walking and stacking. I can't do a job from home as they are all accounts! (Which I am no good with!)
@@LordandLordettes all I have ever done is work with children I have no experience anywhere else x
@@emmasifi5979 I don't think it matters, most places will train you. Have a browse on sit down jobs and see what comes up.