Fibromyalgia: What it's Like | YvesyM
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- čas přidán 11. 01. 2016
- In this video I speak about what the limitations of Fibromyalgia during a flare. Symptoms vary in intensity depending on the individual
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Here is my take on Fibromyalgia & what it's like from the sufferer's point of view.
This might help non-sufferers to understand what their loved ones go through on a daily basis.
Stay strong,
Yvonne XxXx
You have described my life to a tee, and summed it up perfectly. The absolute biggest nightmare? When out of the blue I have the rare pain free day ...and knowing it could end at any minute, and that for sure it will end by the next day. On those rare pain free days I end up getting so emotional remembering how I used to feel and how my life used to be. It’s mixed emotions to feel so good again yet knowing that the horrible pain will return. Nobody understands except others that have this condition. My wife and sons are very loving and supportive and without them and their help I don’t know what I would be reduced to. I could comment on every thing you described, but, yeah...you nailed it. Thank you for sharing and God bless you.
Robert Cairns with me it’s kind of the opposite..I get those moments of realisation when I’m really really bad. and then I suddenly realise how well I had being doing in comparison.for me I forget about the severity of the pain.i have times where my pain etc allows me function to a reasonable degree.i pay when I do too much or I have been on my feet for too long,or doing too much/not resting enough. But then I have times where I am totally incapacitated and that could go on for MONTHS,every single day as bad as the one before.where I move so slowly and my limbs are so HEAVY, I have to pull my body along with me.i can’t keep up,I can’t do what I want to do and I fight to maintain some sort of normality and then suffer behind closed doors...bless you xoxo
YvesyM ... that’s the same for me. That’s me today. And will be for the next week as the weather is cold and rainy. But you know...I fight to be upbeat , to be positive. I refuse to let this thing win. I will give in emotionally one day of the week at most. I can handle the pain, the inability to move or to lift myself out of bed. As long as I can be positive most of the time I will be ok. As long as I don’t get depressed. As long as I don’t let the fog overcome me I can carry on. I have my memories, I have my imagination, I have dreams. I can read! I can live beyond my body and my pain. Life is good. It’s a gift! Xo.
YvesyM ... how do you even cope?? It sounds worse than my situation.
I cope...because I have no other choice. Or options.
Robert Cairns believe it or not I still can now my lawn but it takes days to recover. Wierd stuff right . I honestly wish you the best in your journey
One of the worst things is that because there is no visible signs of it, people, especially family think that there is nothing wrong with you. That it’s all in your head. My family can be/are quite nasty to me about it. Fibromyalgia affects your whole body, the pain is bad enough, but the unnatural fatigue, the bowel issues, the headaches and all the other symptoms that plague fibromyalgia sufferers are terribly real. It’s debilitating. It’s hard to cope with it when your know others don’t believe that you have anything wrong.
suzekit I have experienced this through the years with my friends+work colleagues especially. It is devestating. And pure depressing. And it can also be incredibly isolating when you have people like that in your life.im so sorry hearing it happens with your FAMILY ☹️ I can promise that most of us can relate in some way. I often feel I am the most misunderstood person ever. I fight the pain in silence for as long as I can. I HATE showing pain in company. So I ignore ignore ignore. What ends up happening is that my pain exceeds my threshold, which is very fucking high. and then my concentration in conversations is rapidly going downhill as the pain is going uphill. So I end up leaving my friends,sometimes abruptly from their point of view, *seeming* ok but I'm ready to crash behind closed doors and cry and get in to ridiculous positions to try to alleviate the sorest areas. It's like I have two lives.Showing pain in front of people makes me feel so guilty. So I'd rather be on my own and suffer in peace without feeling like a burden or even worse NOT being believed. What a contradiction,right! The difference between me and you is that my family truly know,my boyfriend knows and a couple of my close friends understand. Really feel for you. You're NOT on your own beautiful. Hang in there and be as kind to yourself as you can possibly be. Big Hugs Xx🤗
YvesyM thank you for your kindness and understanding. Listening to your post made me feel less alone. My best hopes for you too. Xxx
I relate to this. My dad was here during my last flare and, because I was new to fibro, I was holding my right shoulder which was particularly painful (referred pain). and I was kind of complaining. He ignored it completely, and when he finally asked me what's wrong with me and I'd said it was fibro, he rolled his eyes and said "you know, back in my day, if people had back problems they would just deal with it, and didn't need a label for it. People today are so whiny and are too reliant on medication." It really hurt to hear that. For me, my neurological medication was the only thing taking the edge off because ibuprofen didn't touch the pain. I didn't argue with him because I knew it would only lead to more insults, so I just kind of went home depressed. My mom had a similar reaction and said I was going to form a drug habit and rifle through people's cabinets to steal their drugs if I didn't stop taking them now. She even told me fibromyalgia is not a real condition, and that I probably just have muscle soreness because I don't exercise enough. Needless to say, I won't be talking about my health problems with them anymore. My pain is just as bad as described in this video (except I don't have it ALL over during a flare, mostly just in my upper/lower back, shoulders, pelvis, wrists, and knees). I know it's real.
Dangeresque Mustachio my heart goes out to you. You are not alone.
I went via wheel chair during my flight n I could feel everyone staring n wondering what was wrong with me.
I hope all of us suffering from fibromyalgia will find a relief one day. Thank you fo sharing this.
Anyone with fibro suffers from feeling of pins in the hands? or a reffered pain from the neck and shoulders down to the arms and hands.
And you. As far as I know pins&needles are common...they can be cause my acute stress OR muscle spasm pressing on the nerves around your shoulders, with referred pain/sensation to your hands. hope your new year is full of light xx
YvesyM that pins feeling really sucks :( i cant even hold my phone from the pain and my hands are getting weaker. It feels like my shoulder is injured or something :( .
Thank you so much for ur reply
one day at a time .. xx
Chom Poo I do..it is the worst! Not being able to use your hands like I once did. I jus want my life back. This disease is a monster 😳
Chom Poo yes i feel them all the time its irritating but its not my worst pain
It's amazing to know I'm not alone.
youre really not,,as much as Fibro succeeds in making you feel isolated..but your not ;) xx
@@YvesyM, you have fibro?
I have suffered in silence for years, decades to be exact. No one would believe me when I said I was in pain and the doctors sure didn't help.
I was a child when I started having problems. My mother would take me to the doctor and he kept calling it growing pains. My parents started getting mad at me when I complained because the doctors kept saying there was nothing wrong with me.
One day, when I was a teenager, we were at a family get together and I just had to lay down. My mother was looking for me and I heard a relative tell her that I was laying down because I said I wasn't feeling well. I heard my mother kinda laugh and she said, "yeah, she's been dying for years." I was so hurt, I never expressed being in pain again. I did turn down invitations to go places and do things but I never told anyone it was because I was exhausted or I was in pain.
Everyone kept telling me it was all in my head, I was treated like a joke for nearly my entire life. I was married then divorced twice. I was called lazy, a hypochondriac and even crazy.
Less than two years ago, I was finally diagnosed with Fibromyalgia, I was 58 years old. Of course, it isn't that simple because no two people who suffer with this are alike. I've been to different specialists and I've been diagnosed with interstitial cystitis, costochondritis, neuropathy in my hands and feet and a long list of other things that I could list. A week from today I'm going in for an endoscopy so they can look at my throat, stomach and small intestines and take tissue samples for biopsies.
I told one of my specialist about how my doctors in the past just ignored me and told me my problems were all stress related. He told me that, unfortunately, he hears that a lot. He said that, because there is so little they know about it and little that can be done to help, that most doctors will just prescribe antidepressants and then ignore you in the hope that you will give up and go to another doctor. He then said that doctors don't like patients they can't fix.
My mother passed away in 2005 from ovarian cancer. I have two younger brothers and a sister and my dad. I never hear from them unless I call and I don't get invited to things at all anymore. The main excuse they've always given is, if there was something really wrong with me the doctors would have found it.
Well, they found it! My family's response was, "Fibromyalgia? Well, but that isn't a real illness is it?"
This was the last straw for me. I moved to another state to start over... and shortly after I moved the pandemic happened.
I keep looking for a job I can do but my options are limited. I'm scared and I'm tired... and I'm angry. I feel like my life was stolen.
30+ years sufferer with fibro.
My recommendation is take no drugs offered. Lots of lemons, fermented foods, protein, all organic. Eat cilantro to remove heavy metals. There is no fix. I can't work but if you get the inflammation down and eat clean generally you'll feel better. Jme.
So sorry to hear of your problems that you've struggled with from such a young age. I have struggled with M.E and Fibromyalgia for the last fourteen years and I thought that was long enough. You are spot on when you say it steals your life , you unwillingly become a different person to the one you used to be. M.E and Fibromyalgia are absolute beasts of illnesses and when in full flow they show no mercy on the body whatsoever , if only people knew.
I have spent thousands over the years on miracle supplements and vitamins and have now resigned myself to the fact that unless there is a scientific breakthrough we are stuck with this thing. I'm 59 now so time is running out for a cure to make much of a difference to my life but I pray to God that they can find a cure for future generations so lives will not be destroyed by these illnesses as they are now. Good luck with your battle and try to stay strong , remember , there are millions of us in the same horrible boat.
@davebarlow6457 thank you for your kind words. I have found a job that I can do (and a company that is willing to work with me). I take it one day at a time, it's all we can do. I hope they find a cure for this beast so those in the future don't have to suffer.
Take care.
@@tinabouman5835
You too Tina , thank you.
I've spent most of this morning on the sofa crying. I'm in so much pain all over my body and I have a crippling headache. I've never been diagnosed with anything, however having suffered from chronic back pain for around 20 years, and having a spinal fusion operation in 2011 which failed an made matters worse, I started to look elsewhere at what might be causing me so much pain. This video popped up and I spent the entire duration nodding my head. All the other symptoms I have always just thought were random, and everybody had them. Extreme tiredness, trouble remembering things, aching bones and muscles, no motivation or energy to do anything, aversion to bright lights, aching eyes. Some times I find myself stood In room, completely unaware of why I went there in the first place. Everything I used to love doing, walking, cycling, running, going out on photography trips, all those are distant memories. I always associated my aching body to my back pain. Multiple trips to the doctors always just ended in being told nothing was wrong and to rest. They don't listen when I say rest doesn't help, all they want is to get you out the door quickly. I spent over £600 on private therapy and tests only to be told after 2 weeks that I just need to exercise more, they didn't seem to realise that even exercising for 10 minutes takes 3-4 days to recuperate from . I know there is something wrong with me, more than just a bad back, but no matter what I say, no one seems to care or want to investigate further. I have another gp appointment on Wednesday in which I hope to try and put across just how bad this is. Being a 32 year old male, I have gone past the point of believing anyone is ever going to believe or help me, I need to keep trying, maybe, just maybe I'll find a gp who has some degree of understanding and sympathy. Yes I feel guilty that I can't do things, yes I feel lazy, yes I know that people just think I'm trying to get out of doing things because I don't want to, the truth is , I would do anything to be rid of this constant pain. It sounds horrible but, sometimes I wish I could transfer my pain to someone else just for a minute, just so they can feel what I live each and every day, just to make them realise, I'm not trying it on, I'm not lazy and I'm not over reacting. I may or may not have fibromyalgia, and I suppose what ever label you place on it, doesn't really matter, but I just wish more than anything that I could have my life back.
keep going from GP to GP until you feel you are taken seriously enough -this is your LIFE we're talking about and you should be your first priority. I'm sorry your experiences have been so bad but there ARE good people who can help eventually. Keep complaining until you feel they hear you. It is no way to live and you shouldnt have to accept all this pain as your reality. I'm sure there will be better times for you so hang on in there and keep fighting! I know you must be so tired but you deserve to get everything checked over. You're so long and you shouldn't be made feel hopeless on account of a strained health service. Good luck Tom!
See a Rheumatologist for your diagnosis. Skip the GP he won't help at all. Ask the rheumatologist if he is treating other fibre patients. If not, why? He could be one of those quakes who thinks it d sent exist because he can't see it. Go bless you. A diagnosis can help you at least begin the process of getting disability, which you will need and you need to do it soon because they always turn you down , then you must get a lawyer, who will get paid after he wins your case and it takes about two years. Just get a doctor who treats this, very important.
M Coyote You can't see a rheumatologist without being referred by a GP. I had this same issue before I had my back surgery. It took me 3 years going from GP to GP to finally get referred to the orthopaedic department in the hospital, who then referred me to the pain clinic, who then referred me back to the orthopaedic dept. if I could afford to go private again, I would, but I spent £700 almost a few months back on private treatment and it got me nowhere at all.
I emphasized so much with your words, friend. I also have yet to receive a diagnosis and mine too originated from a spinal injury in 2009, the pain spreading and just getting much worse until now and I can’t even feel my hands. I think it sounds like we may have MS, or fibromyalgia. Either way, we gotta fight. Fuck the ignorant people, YOU know what’s real to you. God knows. There’s no shame. This has become our reality. But it does sure make you appreciate those slices of bliss every now and again. Take care of your body and mind and hang in there
Tom Photoix ... Tom, so much of what you described is shared experience for me. Spinal fusion, therapy, being told to exercise more. All of it. You are not alone. Not even a little bit. So many of us. I’ll included you and all the others here in my prayers.
Thank you for all this! I wish my sons understood this. To them I am a drug addict. I do not take a lot of meds. You totally described my life. I feel very alone, and lost my biggest supporter, my husband, on July 20, 2022. I also have several other diagnoses too. A person called my not being at all 5 days of a family reunion a minor inconvenience for me. No, it was all the noise and stimulation. I have to get away for a day and regroup, and a lot of times one day does not do it. I miss my former self. I was a go getter. I conquered so much. Now, it is hard to conquer getting out of bed. Thank you for your video and God Bless You!
Who'd have thought, after 7 months or so of seeing this video and commenting, after 20+ years of pain, on Monday I was diagnosed with Fibromyalgia. I must admit, having a label on it doesn't make much difference to me, but I suppose being recognised has having an issue is something. HOWEVER. The consultant rheumatologist refused me any pain medication and simply said I just need to exercise more. I tried explaining its not quite as simple as that, I already have a very physical job, I probably do more exercise in a day then most "healthy" people do in a week, I simply couldn't do much more, but he wouldn't listen. I was told to do yoga or Pilates (been there done that, made things far worse) and pain medication only covered the symptoms, didn't solve ( his actual words were pain killers only stop the pain) no shit Sherlock. So basically I'm no better off than I was, and don't really know where to go from here. Gps aren't interested and refuse pain meds except for paracetamol which does nothing at all, and the consultant has refused any pain meds, so I've reached the top of the tree and fallen all the way back down. I keep reading all these stories of people with FMS or similar conditions who are on all sorts of drugs to help them, and I just don't understand why my doctors just flat out refuse to help me. It's most strange and pretty soul destroying. I guess I just carry on as I have done for the last 20 odd years living in agony with little enjoyment in life, struggling through everyday just to start it again the next day.
hey tom! i see the predicament youre in. if a physician is asked for pain meds and all else i think they would be more cautious prescribing them. i feel like you CAN get sorted in this area but its incredibly important to start at the basics and work your way up again. exercise is extremely important for managing fibro pain and it takes time to see results. if exercise isnt helping then there are other routes like physiotherapy,massage,heat treatments etc that need to be tried again and brought to the attention of your GP/Consultant. unforchunately,from the point of view of immediate relief, most of us have had to go this route too. because drugs arent all theyre cracked up to be! fibro pain is known to be poorly managed with all available drugs and results are not how you'd expect. they typically have limited use for many and few people get lucky enough to function as they normally would. added to that the side-effects in and of themselves can be really debilitating and create need for MORE drugs,secondary to those conditions!
if youve only been diagnosed i can see why drugs arent being offered straight away. the rhuematologist doesnt know you and doesnt know what benefits you can get from less harsh modes of treatment. all i can say is stick with it, try to be patient and do what is being advised and keep seeing that consultant. dont press on drugs -it isnt a good way to go from your point of view and it would cause medics to with-hold medication if anything!
hang in there x
Have your Vitamin D levels checked.. mine was 14 and I thought I had bone cancer, and tons of symptoms. Within 2 months of supplementing vitamin d3 10,000 iu with Vitamin K2, and magnesium daily.. I am doing so much better. Tons of videos on CZcams about Vitamin D deficiency... Check them out, and get tested by your Dr. Best wishes!
i am so sorry that you are going through this. i havnt yet been to a doctor to officially diagnose the pain problem, but your story is my story. Every day is a struggle just to start it all over again the next day.
Try CBD oil. Pain pills honestly don't even really help with the pain very much.
Gabapentin helps quiet the nervous system. It is not an opioids, and it's not a scheduled drug (save one state). This medication doesn't knock out the pain, but it quiets it. For me. A lot of people with fibro do not like gabapentin. For me, it knocks my pain level down 2-3. I've also been put on a reuptake inhibitor designed for fibromyalgia patients. It is like an anti depressant but it is not one. There is science behind it-- seratonin and norepinephrine work as natural anesthetic to overabundance of substance P-- the drug is called Savella and you may want to ask about it. You don't have to live in pain. Dump doctors who make you feel that is your only option. Find a new one that will work with you. Never ask for opioids, it will make them suspicious.
This is such an accurate description!
I always tell people imagine a bad sunburn where can't touch or if anything rubs against you you scream and cry. then imagine feeling that pain from inside out times 100..
That about sums it up😔😔😔😔
I feel you I don't like being 💆 the pain is so intense.Now I'm going through yearly menopause.A lot of ppl do not understand what we go threw.😰
You hit the nail on the head! That bad sunburn nerve pain is the WORST symptom to me, you can’t get comfortable, can’t sleep, clothing hurts, everything hurts. I’m dealing with that right now.
Thankyou for clearing it up so well. I've given up trying to communicate the condition to anyone and everyone around myself, including Dr's. Years back+/-20,I was diagnosed, were on trials of various meds with no real successful outcomes. I've been on meds for depression ever since and have just had to learn to cope with difficulty. I feel incredibly guilty for what this has done to my relationships to those closest to me and friends that I've lost through the years, because I could just never really explain it in a sensible way. So I tried to hide it as hard as possible, but most of the time it didn't work of course. I'm so relieved to see people are actually talking about it!!!
I have started to suspect that I may have fibromyalgia. My husband actually pointed out that my symptoms are very much like that. I have been in pain for 7 years trying everything to minimize it. Almost everyone I've mentioned the pain to just says it's normal to feel pain as an adult working full-time. But I am no longer sleeping. I can't think straight. I feel like I'm losing my mind. I cried watching this because everything she said makes sense.
I was diagnosed with fibromyalgia this week, and I can relate to a lot of the things you are describing in this video. I have been struggling for more than 5 years now without a diagnose and I don't think anything has been more challenging and difficult. I especially struggle with trains as you said one could do, but also because I am very sensitive to smell, sounds and light, and being in a place where people talk loudly on the phone, sometimes eat and I can't get away when I want will sometimes give me such anxiety as well.
Thank you for making this video!
+Joffelicious I'm glad it helped in some way and thanks for your comment. Please Share it if you have a chance!
what you say about heightened awareness and over-stimulation with senses is something I can relate to somewhat.I`guarantee youre not alone in that. I hope your journey will be more smooth and less distressing than what these 5 years have been. Big hugs xxx Yvonne
Your doctor said this to you do you would stop wasting their time
Thumps up for getting through that list without breaking down in tears! I would also like to add the feeling of guilt to this long list. I have always been the hardest person in a group - at home, at school and at work, at social gatherings, volunteer jobs etc.. Now I feel 'lazy' whenever my body lets me down. This guilty feeling is another pain eating me up inside.
oh my god..never spoken about that before -about feeling suspicious that people think i am lazy.eg. at work i often use a stool, unlike any other workers. and i find it embarrassing trying to find one and ask somebody...because i think they think i am lazy :( THAT sucks. SO much of this just SUCKS....
Hi - such a good descriptions of what it's like. Hard for people to understand unless they experienced it. Words like fatigue have no reference for other people given that their fatigue is on a whole other plane than when we have ME/CFS/Fibro. I also found that the pain whilst initially manageable, really wore me down over the years and felt a lot worse. Appreciate you sharing! :)
I say that regularly. You can handle the pain in any given moment. Maybe rate it anywhere from 4-8 out of 10 on a given day. You can endure MORE pain than what you experience in a moment. It's not about threshold, it's about the *prolongedness* and the longevity of the pain. Its very hard to fully get that across to a non-sufferer. And fatigue! Oh that word! Fatigue is almost an illness in and of itself, that's how debilitating it can be. Take good care. Let me know if you have any video requests? Cheers, Yvonne
hi i am 31 years old and for the past 5-6 years have been experiencing intense stomach aches that have got worse since and with these stomach aches i get really tired with pins and needles in my feet legs and arms and the feling i have just walked a marathon while boxing at the sametime, my head always feels cloudy like i know im reasonably intelligent but dont have the energy to use it half the time, i get a real shortness of breath and very forgetful/clumsy when at the worst, i can have a week where i think i feel ok this week but then get slammed back down with it all, it was only when at the hairdressers and explaining these symptoms that and more that i havnt included here like the never feeling comfortable in 1 position or that i have the feeling i have a cold/flu beginning all the time its just not nice! i had been convinced that it was all in my head or that im just anxious but it really isnt and i just want sooooo much to be able to do what other 31 year olds do!
I was thinking that I was alone with this pain but I guess not. Thank you so much Yvesy.
For the first time in 20 years I feel that someone understands....Thank you YvesyM, I'm going to stop praying for only myself an begin praying for all people who have fibromyalgia.
M Coyote we are never short of prayers, thank YOU
Every time I watch this video it literally brings tears to my eyes and I start to sob. You have described my everyday life. I’m glad I’m not alone but I truly wish people didn’t have to suffer with these horrible symptoms! I wasn’t also “chronically ill” after I had a bad car accident in 2010 my immune system and health went downhill and FAST!!I feel like when I look at myself in the mirror...I truly don’t know whose staring back at me in the reflection. I’m not the same person I was before, and it’s scary. Hang in there Spoonies!
awww
It's such a relief to find someone who can articulate how I feel. Thank you. I'm so sorry you're suffering with fibro too x
its awful that so many people say that to me though :( big hug!
It felt like you were describing my life. Plans are never set in stone. You cannot sit through many things. I’ve gotten those comments about ppl not seeing the symptoms. Love the video. THank you.
You should know, I love you for this video!!!! Thank you a million times over and over for taking the time to make this video. I cried watching it. And I've watched it probably 20 times. When you hear someone going through what you go through it can feel relieving. Like I am not the only one! The realization came to me one day that, maybe the only people who will truly understand me are strangers. But even so, videos like this give me strength to know that its not all in my head. That it is okay to have bad days and forgive myself for not meeting my expectations. Which are usually only my expectations anyway but they mean something to me. Fibro has taught me not to take my good days for granted and to have fun! Not to worry about the dishes or the laundry but to take time to play and feel good. Anyways, Thank you again!!!!
I am literally DELIGHTED reading this!!! You're very welcome!! Reading all the comments here with people saying I just described them perfectly, gives ME reassurance too. We're not alone in our struggles at all and sooooo many people are suffering in a very similar way. Its lovely hearing from you Christina xx
All I can say is thank you for this. This is a well-spoken, beautiful description of what I know so many of us try to explain to others, but rarely have the strength or ability to put it into words. I will share this anytime someone asks me what it's like to live with fibromyalgia, or anytime someone questions or doubts me. 💜
im glad its of some use to you rebecca. *gentle hugs*
I am so sorry for all off you suffering from this disease. I hope they find a cure soon ........ thanks to you I know alot more about fybromyalgia and this awareness you are teaching us will help to be more considerate
Hello, I have just come across your video, thank you so much for posting this🥰 My goodness you have described and said everything so perfectly and so eloquently. Such a misunderstood chronic illness, you look ok on the outside but nobody apart from those experiencing and going through it would understand. Thank you for taking the time to explain what sufferers are going through🥰
Thank you for making this video it is really nice to hear from someone who has this too so you don't feel lonely❤️
+Sædís Jónsdóttir Hug! Take care :)
Thank you so much for sharing this! We are always here cheering you on!
Thank you for making this video! You have helped me understand that all of my symptoms are related. I am in the process of being diagnosed with fibromyalgia after 5 years of seeing a number of doctors, none of which helped. It is so hard to plan one day to the next and be able to lead a normal life when your body wont cooperate. Its good to know that there are others going through the same thing.
Hi Jodie!
Thank you so much for commenting. I'm really glad that this has solidified your thoughts about diagnosis etc. If you can relate to this I think it's very likely you have Fibro. It is SUCH a difficult condition to explain because some days your symptoms can be different than others and you feel like a drama queen having to explain things to people. Like how you can keep up well enough on one day,but another you're absolutely exhausted and every movement is painful & tiring
I share ur video with anyone of my family or friends who don’t understand my fibromyalgia. I think u say it all so well. It’s great to know I’m not alone. Plus that I don’t have to repeat myself a million times coz I just share video.
Pls never remove this video. I’m sure lots of ppl share it like me.
Thx a million n God bless
Thank you for making this video. I don't know anyone else with fibro, and as kind as people are no one really understands how horrible it is to live with the condition. You touch on so many of the problems and daily symptoms. We live with this awful condition. Thanks again, it simply makes me feel not so alone xx
Wishing you the BEST of good luck hon! Xoxox
Thank you for giving me a voice for what I experience on a daily basis!! God bless you!!
and God bless you. its a struggle isn't it :(
Hey guys! Just letting ye know about my new video: 10 Tips for dealing with Chronic Pain. I hope it is as helpful ,Yvonne xx
I have not heard of any men having fibro. And what I'm going through is so bad. Nothing Helps. And the pain keeps me up so it builds up. Bad back. I just turned 40. And feel 140. What is your video about. Thanks A Lot . I am 1 of the very first Medicinal Marijuana Patients In Chicago IL. And IT Helps A LOT! The Wax and Indica HELP! There is Hope. Not that much relief. i Have Severe Fibro. any pillls I take turn into nothing. They all stop working. Peace.
I would LOVE to try medical marajuana and get off some of the drugs im on now, especially as i have a few years left in me yet!!
yup. it sure is, no question about it.
If I feel incredibly misunderstood, and I'm a 52 year old woman. I can only imagine how misunderstood a young man must feel. Especially by older generation males. I also do occasionally get a pass from my family for occasional tears, you probably are under much more pressure to hide yours entirely. I, being a female can also ask for help to lift things or assist me in carrying things. You, most likely would not even feel you could ask. I wish you God's Peace and healing.
Right?!?! :( I hate how backward the world still is
I ve lived with fibromyalgia for 30 yrs and have tried everything out there , I have a tens machine that helps with shoulder pain, but the headaches and brain fog are a real pain . It’s a comfort to be able to hear of other people’s thoughts and feelings
So true! Thanks for sharing! Had it all my life but has gotten worse over the years. Gentle hugs to you!
You are amazing. This video nearly brought me to tears because it seems to describe almost perfectly what I have been dealing with the past couple years, with my hands going completely numb since March. I have an MRI scheduled to see if it’s MS or not. I just want answers, I feel like someone has hijacked my body... like a demon is sitting in the drivers seat, navigating me against my will. Pushing buttons and taking complete control of my functions. I don’t feel like I’m me anymore. I feel like Ive become my disease... even worse, the phantom disease that has only questions and no answers. My husband has been caring for our beautiful 2 year old son since March bc most days it’s so hard for me to even get out of bed, I’m missing out on so much of my life. I’ve lost so many friends and even family because people just don’t understand. They want the Whitney I used to be, the lively, bubbly, light up a room, silly, happy girl I once was.
I’m so sorry to comment on your beautiful video with complaints of my own, but I just haven’t felt understood. I feel like I might be just going crazy half the time. Like maybe it is all just in my head.... but it’s not. I wish it was. People say go exercise, that’ll help.... but I don’t have energy to wash my own hair!my fingers and hands are so painful that all I used to enjoy like doing hair and makeup, painting, drawing and welding are all now fond memories of what I used to be. Before this phantom disease came and chose me....
god bless you. I hope you know how beautiful and eloquent you are. You just helped a very depressed and isolated pregnant woman today with this video, please know that. It’s people like you who will change our world.
Not sure if I should hope for MS or fibromyalgia diagnosis... either way I lose, right? But at least then this monster which has taken residency inside myself will have a name. And maybe eventually a face. One that I can beat! With help from kind strangers from around this world like you. Thank you kind stranger. Thank you..
Hey Whitney, how are you doing? Ever get any answers? Right now I’m where you were at when you wrote this. Trying to figure out what’s going on, and trying to stay hopeful and focus on making not great days better and liveable. Thank you for sharing. I can so relate to what you shared. Makes me not feel so alone ❤
Thank you so much for posting this. Life is super hard with fibro. *gentle hugs*
Thank you for this great explanation of Fibromayalgia... This is exactly what I go through almost on a daily basis.
listening to you talk, nodding, thinking to myself "exactly, that's it" thank you for putting into words .
+Sassy CountryGirl Take care darling. I just did another video on how we can be supported better by friends, family etc. Yve Xx
Thank you so much for making this. I was diagnosed 9 years ago and have tried (and failed) to ignore it.I am taking so many meds I can barely function. I have every single sympton you mentioned and you have no idea how it feels to know I'm not alone. I really thought it was just me. Thank you so kuch
I think with my other videos on here people must find it difficult to believe that i am in CONStANT pain. I can show myself to be happy a lot. But come the end of the day I am shattered and my energy for putting up a bright side is non-existent. I find that being in a stationary position for more than 10 minutes is all I can take without something really beginning to annoy me. That's with ALL the meds I am on. And the side-effects... Like you, it is almost unbelievable. How old are you if you don't me asking? I think if you try to 'ignore' Fibro and carry on with your usual routine you quickly turn into a MESS... It's fucking horrible xxxxxxx BIG hugs to u
You have nailed it! As you say there’s so much more to the condition!
So many people deal with this. We need more advocacy, thank you for sharing your experience. I hope one day this condition will be treated as serious as it is.
Exactly how I feel ❤ I hear you and I know what it is to fight fibro ! Stay strong !
and you, stay strong X
EXCELLENT DESCRIPTION for ALL of US who fight this "THING" we live with. Thank you for speaking on behalf of people with Fibromyalgia ❤
aw thanks for this comment
@@YvesyM I've shared this with family who don't understand 'this'. Kinda gives FM some credit as REAL...not just me👍🏼
Im so happy i found your channel! Iv found a lot in my time online and in real life that people who do not have fibromyalgia, who just briefly read about it or just heard about it. Do not believe how painefull it is. How much it can disable you and can sometimes be right out mean and accuse you of just using it as an excuse. My pain started many years ago, and after 12 years of struggling i got disabled. Because i could not work, i have a hard time even cleaning around at home. Some days i dont even want to get out of bed. My pain the last year has even begun to effect my eyes, my eyes hurt from sore eye muscles. I have constant neck pain, often migraine, Not to mention all the joints and trigger points in my body that hurts all the time. Sometimes it feels like someone is hitting you with a bat! And i live alone too so i have to deal with every day things by my self. which is okay but it goes slowly. I had to give up crocheting which i loved, i had to spend a lot of time in therapy to actually start accepting me for who i was and had become. I wish people knew more about this illness and had more of an understanding to it. I feel like if i didn't have to fight so much to make people believe that im in pain, use so much effort to brush off the hate and the accusations of laziness, that would take such a load off.
MarianneF I literally understand everything you're saying. And yes, fighting to even be taken seriously enough can be so devastating. At least doctors know, scientists know, WE know. Pity the world wasn't so closed in their way of looking at disability😒
YvesyM I know :( its really sad! But you're right! at least WE know and we can take comfort and support in each other! xxxx
This is the best video I've come across on Fibromyalgia. Every day is a struggle. People will say to me "getting older is rough". This is not getting older. This is so much more and it hurts when people try to minimize what I'm going through. Thank you so much for your video! Take care!
I'm glad I could help in some way - even if it's just relief in knowing you're not the only one. It's so hard explaining it so I thought this could help people understand. Take good care Xx
+YvesyM Thank you again! I shared your video on my Facebook page so all my loved ones might get a better idea of this condition. You take care too!
+Mar Bear Good thinking. It's really important to have people close to you understand the challenges you face everyday. Sometimes it can be so upsetting when you feel your suffer goes unseen...it's like you feel isolated with just the Fibro and YOU, you know? Thanks again Xx Yvonne
This video has moved me. You have hit the nail on the head, I struggle to tell people An put across how it actually is to deal with this. It's 4am now 11th night awake. I suffer terrible with my neck An shoulder. It gives me bad heart palpitations. I have just had a new born baby An the weight of dealing with this An supporting my partner is extremely difficult at the minuet. Iv been dealing with it for years now and Drs etc just don't ever seem to help. Kind of got to the point where I just feel like my routine will never change. Taking strong muscle relaxers feeling terrible the next day and dealing with this. Thank you for saying what I can't put across to people. I will use this video for family etc to understand x
Alex Till I hate that I have hit the nail on the head for so many people :(
Is heart palpitation is common in fibromaylgia
Hi YvesyM my name is Norma I am 55yrs old and I just got told this year that I have fibo, and it sucks what you said in your video is what I am going through thank you for letting me know I am not just the only person going through this, all you said is so true. I was a property manager for 25 yrs and now I can't even read a book, watch tv because I can't sit long enough to enjoy it because I am in pain my whole body feels like I done lot through out my day, but I woke up tried and in pain and going to sleep at night with pain and that's if I can sleep because my body can't rest. I am so happy to know I am not just the only one going through fibo and that I am not making it up. It is hard for family and other people in your life to understand how much you are hurting inside and out and you just can't explain how or what you are feeling so I am going to show them your video because you said it so right on. I thank God I have a wonderful boyfriend we have been together for 15 yrs and he helps me so much, takes good care of me and my needs. I have 13 grandkids and I can't even enjoy. So I just wanted to thank you for your video.
You are so on point!! It is like you are talking to me right now it sucks it steals your life
Omg! That's me! I have struggled with fibromyalgia for years now.
Michelle Smith me too. Most likely close to 30years . Good Luck in Life. From a slightly Burned out Aussie
You are so right on this, I have had this for 27yrs, and about 7 yrs ago, I was told I could never work again. I use to be a rider and runner and swimmer, now I'm in a worker and I have a care giver, I sleep in a special chair that lifts me up and out into my walker, and it's getting worser, I will probably be in a wheel chair I'm the next 5 yrs. I want to thank you for really telling people about this 6 yrs ago a Federal judge order me to have full disability because of this. So again thank you for letting people know the full truth about this disability. God bless you.
Connie Bollibon i can only wish you good luck & support & love
Thanks (again) for educating us so naturally and eloquently on the trials that (too many) people endure. I'm sure your videos allow other sufferers to feel validated. I can empathize, and hearing about fibro makes me grateful that my aches are smaller and temporary. So all of us have the Corker Communicator aka Spokescorker to thank :-)
P.S. Nice high-def video!
THANK YOU for such an encouraging comment xxx
+YvesyM :-)
Happy 2016!
+DoRayMeFa Happy 2016 :)
Thanks for sharing this video, you very eloquently and sincerely describe the experience of living with Fibromyalgia. I struggled with it myself for many years. It was only by being supported through the proccess of releasing supressed emotions that I got well. I have been symptom free for nearly 2 years now and my energy levels just keep on growing. I have just started up my own chanel that will give away tips and techniques that I hope will help other people. The Invisible Illness Coach. xx
I have fibro..this is the best and most insightful description of what I expedience and I will use it to help my family and friends understand how I feel each day . thanks for making it .
+valerie purves my pleasure Valerie. Best of luck with everything and always feel free to stop by again. Yvonne xxx
You described it very well. Before I was diagnosed, I was beginning to think, I was crazy and that I was making up my own pain. Thanks.
you're very welcome! yeah, i honestly think anybody with chronic pain questions themselves at some point.when i am REALLY bad its like i just cant get my head around fibromyalgia because the pain is so great :/
I haven't been tested for Fibromyalgia, but you described every symptom I have exactly.....what is most frustrating is trying to explain to people what I am going through, but they think I am exaggerating, or when they mock me.....thanks for sharing :)
Spot on. Made me cry 😢
I haven't been diagnosed with fibro but watching this video is like describing my life, I really hope that I can find answers
Just diagnosed with fibromyalgia 2 day’s ago. This video is so relatable. I’m tired of being in pain and being slow because of my body. I hope I can have a pain free day soon.
I have a tinnitus, which is sometimes annoying, especially when I try to sleep. But, its side effects come no-where near what you have described, about Fybromyalgia. I respect you for being so strong, and living with such pains.
We can hope, that one day, there will be a cure for this illness.
Omg so true. every word.
*big hug*
So honest… thank you for that.
Thank you, you’re spot on in all you say. I recently had a plane trip and fainted in the isle of the plane.
I’d sat around at the airport for over three hours due to a plane delay. I had extreme pain all over the body, I remember feeling dizzy and felt I just had to move, I also threw up 😩 I can’t sit for long periods with fibro pain. I was taken to hospital by ambulance and spent the night in hospital under observation. I don’t recall the fall at all ,only feeling dizzy and the desire to move. One Dr said you can faint from fibromyalgia pain. 🤷🏼♀️
I picked up a box today and had to take a minute to get myself back together... and yeah, no one really understands our pain... and the shower thing! I HATE SHOWERS! xoxo this description of fibromyalgia!
Thank you! My wife was diagnosed recently and this mirrors her experience
its amazing how many people tell me that. best wishes to the two of you!
Thank you sooooo much for making this video. I have passed it on to friends and family members. I have a friend coming to visit and she said make sure you rest up we are going to paint the town red for a week straight. I am so scared, of how much pain I'm going to be in, she says she understands fibro that her gram has it but with a statement like "rest up"" maybe she doesn't quite know the extent of it.
Hon if you see ANY video at all look at my most recent one! It's about supporting a friend with Fibro and I think it could be SO useful to show it to her!! Good luck hon and go at your own pace -trust your body Xoxo😚
+Angela J My pleasure by the way! I totally understand your nerves about going out. If you still find my other video won't help then message me on here if you like :)
Just been diagnosed after years thanks for sharing it was like you talking about me
Denise Haley it's crazy how many people have said that x
I was diagnosed with M.E and Fibromyalgia 14 yrs ago , I know there are worse things that people can be diagnosed with but if severe , these illnesses can break you. I have sometimes gone to bed hoping that i won't wake up in the morning. The feeling of illness and pain can take it's toll.
Wow, you sure described it perfectly! The battle is rough. If only people could understand how much of life is taken away when even going on a vacation is an overwhelming thought because of how much energy it would take and the large chances you might not be able to handle it. I love building computers and trying to start my own show but if I am able to start showing my PCs at big LAN events and competitions I am doubtful that I would be able to even handle the trips.
How long have you been diagnosed? I have another video on the medications that I am on right now and the ones I have tried. Do you find that exercise helps at all? It so cool you have such an interest in building computers. Maybe it could be a goal of yours to get to one of those conventions?
1, hmm I think around 5 yrs now.
2, Saw the other video and even enjoyed watching some of your other videos ^_^ like "Smelly people".
3, I find that my muscles seem to stiffen up a lot in the neck, shoulders, & legs so I find myself always having to stretch. I find the exercise can help by producing needed chemicals for the body, also listening to emotional music to trigger adrenaline production helps. I find it helps as well to just wear socks around the home instead of shoes like I was, since it allows stretching out the leg muscles & feet+toes more often. I also have mild mitral valve prolapse with mitral regurgitation so that does not make exercise the easiest. Despite that I do my best to weight lift still & curl 25 Lbs weights with 1 hand so that's not too bad for a thin guy.
4, I am working hard at my goal and already have over 600 followers for my business @TefensTech on twitter & 400 friends(mainly all PC builders or work at PC companies). Also already have a sponsor that sent products & the show hasn't even started yet. :D
5, Thanks for replying! I also subscribed to your channel to keep updated with new videos.
6, Cool that your Irish & I noticed you often wearing Native clothing. ^_^ I'm mainly Irish with a bit of Native mixed in. lol
+Tefen M Holy God! Sounds like you're doing a *super* job!!
Thanks! The support from people Online seems to help boost the confidence & motivation.
This constant pain and tiredness is horrible, but I also have problems with my feet. I used to walk everywhere but now if I get 1 hour a day I feel lucky. All I get to take is Tylenol because I can't take anything with aspiring. Wish I could give my pain to family and friends so they could understand and know it's real.
Hi Yves, my name is Virginia and I just diagnosed of fibromyalgia but the flares up started a month more 5 weeks ago. Every thing you are saying here is what I’m experiencing my best day is when I can able to stand up for 20 min and do housekeeping most days I’m in bed yet can’t sleep as pain is worst when I stay in one position for few minutes. I have to keep changing my position. My heart would be pounding most of the time and it’s hard to even breath.
I was diagnosed around 5 years ago with Fibromyalgia I have chronic Migraine, around 2 per week, I also have 3 bulging discs in my neck so my already sore muscles and tender areas are even more so, my shoulder to neck muscles are constantly in spasms because they are trying to support a horrible Lego project that is my vertebrae... I had to have surgery it was an emergency appendectomy a few weeks back, it took 3 doses of Morphine to ease my stomach pain, but it felt so weird cause my spasming shoulder muscles relaxed, I actually thought I was having a reaction to the Morphine..lol my daughter who is 19 doesn't understand about the lack of sleep and chronic fatigue that follows this! Anyhow thanks for the videos, keep them coming!!
Thank you so much ..I was diagnosed 6 months ago it was hard for my family to understand why I was always feeling sick ... I had to quit my job because I was always sick I don’t feel alone anymore thank you I felt depressed because my family didn’t understand me and comment that w
I was faking until I was finally diagnosed I felt valeted by my doctors...before I was diagnosed I would cry when I would have my flare ups I couldn’t understand what was going on with my body why I was always in pain n tired ... Lyrica n many other meds including tramadol has worked for me so far..
This describes me almost perfectly. My pain is more like a sore very achy pain, like I worked out very hard and now feel achiness, but it just doesn't go away. Is that a type of pain those with Fibro feel? I also have anxiety and depression, which I can't remember if that was mentioned in your video. Sorry. (Brain fog and forgetfulness). I also have gut issues (Leaky Gut Syndrome) & am at the early stages of Peri-Menopause. Not sure if they are at all interrelated or not. I've read online on numerous medical websites that at least 60% or more individuals with Fibro, also have gut bad flora issues. Also, I've read that Fibro could possibly be caused by trauma (physical, mental, emotional,etc). This may be true, as I personally know some who have gone thru some sort of trauma(s) who now have Fibro. This is including myself, however, I haven't been diagnosed, yet. I have an appointment with a Rheumatologist in a couple months, so we'll see what he says. I will say it is hard to find a Dr who will acknowledge that Fibro is a real syndrome. Anyone agree?
You described it so well! ❤️💞❤️
Cheers for the comment hon. Sending you all the best Xx
Thank you for this video 🌹🌹🌹
you are soooo right and nailed it. Thank you for saying it on you tube as when i go to the DR i forget so much and i do not tell him a lot of things as my mind goes blank when someone asks me about me
I have a feeling that can happen to a lot of us....
Yes, you're right about wanting to remind people you're in pain but then I also don't want to go on about it. Listening and talking about illness can be boring. Fibro is very much an invisible illness (unless you're using crutches or a wheelchair) so people do forget or just not realise in the first place. I want to wear a T shirt that says 'Just because I'm upright doesn't mean I'm not suffering!' Lol
Omg u just put my life in words ... Im new to this iv suffered for years on end - not knowing what was wrong
This video just about sums it up ....
Wow... I hope maybe it will help you to get a proper diagnosis and hopefully the best care xx
Thank you! You take good care of yourself!!!! Hopefully you have help from family and friends...
+Tammy Aldrich My boyfriend is really good to me and my Mum is pretty great too. I am lucky. Speak soon
Hi ..I've been living with it for 9 year's now . I have a very physical job outdoors which is becoming a nightmare but is nothing compared to the guilt and sadness I feel for not being able to play with my kids as much as I would like. ( so frustrated ) your video has reminded me that there are people out there that do understand. thank you . slainte
B S you're Irish! :) Nice to know that! listen you're not alone! You said it yourself so please remember that!
Thanks for putting this up. I was diagnosed with fibro a few years ago. Now that I have hit 34, the symptoms are in overdrive. I t is a struggle to accept the diagnosis as I am always suspicious it is something else. Another symptom that was not mentioned, but have been told by my GP is fibro related is Lymph Node Pain, this can be anywhere from your abdomen, groin, armpits etc - it may be sharp or a burning sensation. I wonder how many other sufferers get this?
Anyway, thanks for the video and take care.
i have never heard of this before! i must look in to that!
+YvesyM
swollen lymph are also a symptom of Chronic Fatigue Syndrome/ME.
they CAN be you mean... there are tonnes of symptoms that can be linked to fibro & CFS
+YvesyM yes there are a lot of symptoms. What I'm saying is with cfs/me everyone I know on my groups who is challenged with cfs/ me has swollen lymph a lot. it's also one of the stronger symptoms in cfs, because of the effect on the immune system.
yeah, that meaks sense. ugh, chronic fatigue...dont get me started...thats why on the good days i seize the day and make other videos on here to take me out of myself!!! but it drives me half crazy being so fatigued >:-(
I can listen to you all day long. So relaxing
You are so beautiful
So accurate, thank you.
Bless you....
Gives good insights, thank you.
Hi again Yves, do you have a moths of not having any severe flares up?
so glad I found your video. sums up my life for sure and I also have dry eyes and dry mouth. I have done blood work for auto immune disease and a lip biopsy to see if i have sjogrens. and all came back negative. My rheumatologist just told me that fibromyalgia can also cause that. I'm not sure.
are you on medication? medication often causes dry mouth...also things like stress etc cause dry mouth too but of course you probably know that! its good youre under a rheumatologist and that other conditions have been ruled out xx
At last someone gets it!
I am walking in the hospitaal for monts now with almost the same symptoms as you, I get now fentanyl paths and
Anticonten if needed 6 a day and I now have a electric scoot mobile because I can’t walk I get so much pain ! Next week I need to go to the hospital for a in during test with a line in my main artery so messers the oxygen en the break of my muscle ! Has some one here experience with? I am so alone in this only 39 years old
Very very eloquently explained YvesyM!! Loved hearing this as had a day being called lazy as usual from having so much pain cannot even wear clothes, soon there's a court trial as a witness in August and my fibromyalgia levels are terrifying me as its an attemped murder trail for my mother and my illness will be under extreme scrutiny as the only witness. So can entirely understand missing occasions are so tough and haha understand the travel pains on transport. Cannot stand for long periods due to scoliosis as well, do you suffer from any spinal issues like scoliosis or slippied discs.... And no fibromyalgia suffereres never know what to do, and one of the worse things is I am incredibly sociable and some times days go by and I see no one, its been like this over twenty years. Feeling rather bitter regarding doctors and absolutely no pain relief thus far...
I get by on less than two hours sleep a day through having too much pain and of course that adds to our pain.
Gentles hugs and thank you for this video I will watch it before court! xXx
wow yvesy , for what its worth, u r gorgeous 😍😍
ha, thanks :) although this was years ago haha
@@YvesyM Beauty never fades........ I hope you are doing well. So many theories regarding this illness. I too suffer from intense fatigue and unrefreshing sleep and joint pains recently. Haven't read too much in this topic.
I believe that Through millions of years of human evolution via natural selection, we have almost evolved to be almost perfect species. My gut feelings are cortisol malfunctioning and dysregulation resulting in inflammation and unbalance of Ying and Yang. Naturally its far more complicated than that but according to ancient Chinese traditional medicine and old Indian medicine. Both places heavy emphasis on bodily balance of Ying vs Yang. Sounds simple and silly but these ancient learnings do have a lot of merit. The ancient medical elders were wise indeed. The correct release and regulation of cortisol keeps our bodily elements balanced. Just my humble 2 cents worth.
exactly how I feel so sad x I don't like anything about this condition either x I have constant pain and fatigue a lot x I have not been able to work for 20+months and I have had flare ups you feel absolutely awful and I think it all sucks like you said x we need our lives back x 😭🤣😍😢 and you really understand x ❤️
Very good description!
+Elizabeth Brady At least it's helping people understand what the bad days can be like, but im lucky enough right now -not having the WORST time pain wise (pain is moderate and not too limiting at the mo). When I made this I was REALLY feeling it....
It definitely effects my sleep. I take Tylenol and a clonazapam before bed. I usually wake up at 4 A.M, the pain wakes me up, so I take more Tylenol. Then I go back to sleep, for a couple of more hours, I reposition myself a lot . Do you get over stimulated easily, like with light and sounds? I do. And I'm more sensitive to caffeine and sugar. I have to do more research on fibro. But the pain!!! I can't take it! Do you also have some weakness?? Thank you for responding back to me, your very helpful!
Repositioning : story of my life, it drives me MAD sometimes. I am very sensitive to lighting but sound not so much. But 2 other people have commented and said they experience it too. Fibromyalgia is all about hyper-stimulation of a part of the brain that interprets pain. So basically it is a disorder caused by hyper-sensitivity. I really hope you get relief from speaking with the neurologist. Tell her everything you have told me and I guarantee you will be taken as seriously as what you should be anyway. Yvonne xx
Apparently the full list of symptoms of Fibromyalgia add up to an incredible 270+...I read the list and didn't realise how many I had. Many I forgot I had! l have battled it for 23 years now and age 62. My legs are going. Get about on crutches, but mostly housebound. The worse of it is my cognitive problems and anxiety. Can't trust myself anymore. Have left shopping behind, credit cards in cash machines and money. Forget appointments, where I left things, no recall. Not dementia, just Fibro. Had tests. Can't wait for the next ten years. It is progressive...I know that now. Good luck to everyone.
You perfectly explained how we live every day. One thing I will add is that One good day you live a normal life you can end up needing to rest the rest of the week. No one will understand you look so well just a day or 2 before and that you can get up the next days. Thank you I am starting a FACEBOOK support group for all that want to support or be supportive in Fibromyalgia ME/CFS IN spanish for now called FIROHEROS you can refer any one you think will benefit thanks
Thank you! Just found out what had been kicking my ass last few years. Fibromyalgia. Mom has had it for about 30 years. If she has felt like this…no idea how she has done it. It sucks so bad.
Can I ask you an honest but frustrating question? Is Fibro always diffuse pain that never goes away? Or is something that can jump from one part of the body to the next and literally come and go? Because I have days where I feel totally normal, and then when my fight or flight goes off, I get these Fibro like symptoms, of sensitivy to touch, brain fog, but it settles down when my mind goes somewhere else.... sorry for my life long story lol I just need your perspective
A chara :) Thanks for the vid. I've had fibro for 17 years (diagnosed). It started when I was 20 years old. My condition deteriorated for about the first 12 years. I found it difficult to walk and most movements caused me real pain. I decided I was going to start exercising (even though I believed that it was probably not possible to last). I was very limited in what I could do but I kept pushing myself slightly beyond my comfort zone. I would do uncomfortable exercises but would only avoid exercises that caused significant pain. When I started I could do very little and it felt like my efforts were in vain and that I was damaging myself but I kept with it. My training grew to consist of gentle kung fu, light weights, and stretching. After about 6 months of training I found my condition improved by about 50%. I have now been working out for about 5 years and it is safe to say my condition has improved by about 80%. I am now 37 years old, can go for light 5K runs, I am enjoying regular kung fu classes (and hope to gain my black belt in a few more years), I can do about 30 pushups, I have a pretty good six pack, and my pain levels do not go beyond a feeling of stiffness (unless I overdo my training). Not too bad for an average 37 year old man. I cannot offer a prognosis for anyone with fibro but I just want to give you hope.
nice opening! :) what a very interesting comment though!!?
Thanks! I have found that it is such a difficult condition to deal with. Learning to respond effectively to the condition took me 12 years!! I will never completely overcome fibro but I've knocked its teeth out so it's bite ain't so bad. In fact, I've learned a lot from dealing with the condition. Pain is a terrible master but a great teacher sometimes! Your vids really help spread awareness of the unseen struggle people with fibro face. Raising awareness and education is so important. You are a great rep!
appreciate that,thanks. its great to hear you so positive,despite the fact you cant get rid of it. i have having loads and loads of bad days recently.but you DEFINITELY learn so much about yourself and the people around you,not to mind all the life lessons learned. it can be pretty bloody hellish :( well done for your training and looking after your body. its the most you can do and obviously try to keep as bright as you can..
I hear you Yvonne. It can be very difficult because there's no real end point to set your mind on. Just remember you're not alone :)
I have fibromyalgia nearly all my life and yes things are very low for me now and I hate it, I feel useless and low knowing that I seem OK front the out side of me , but the inside is pain all the time , my family has seen me Ho down this this condition,boy o boy I tell ya it sucks alright it's horrible, best of luck out there to everyone who has this , xxxxxxx
this video has made me feel a lot better ,im 29 and male i have suffered with pain for the last 10 years or so but continued to work ,december 2016 i had to give up work i couldnt cope , ive since had many blood tests and mri and xrays to no avail .
i have finally got my rheumatology appointment in 2 weeks ,i have all the symtoms and suffer severe depression i feel like the world is against me and that i feel like this is all in my head i hope to get some help soon .
what medication are you taking im taking amatriptyline zapain and citalopram wich are helping me massivly im on the highest doses of each and had to have a ecg done to check my heart could take it i hope to get a reply your video has helped me somewhat thanks kev
hey kev. so sorry youre at such a low point. cant believe you endured so much until 2016. i have a video on my channel about all of the medicationsi have tried and also take now, for fibromyalgia. i hope it helps somewhat and also that you have a good doctor. take care, yvonne
thankyou for your kind words i had an early appointment yesterday with rheumatology specialist he went through my medication,history and my current position he checked me all over and said yes you have chronic fibromayalgia he gave me a leaflet and basically said its up to you to manage ,,,if im honest im reallly upset it felt like he didnt care he said i also have flat feet and hypermobility joint syndrome (BHJS)
he said they will write to my doctor and double all my medication which i feel i need but as for walking on crutches he said its no good ! i understand that i need to be mobile im a 30 year old electrician and was very agile its not like me to be like this but what else can i do i suffer pain in my knees and hips and heels of my feet almost constanly and the pins and needles/vibrating are constant im goin to look through your videos now im so greatful for all your input xx
I guess me too having such symptoms so how did u free from its, what are the medicine did u take?
I feel your pain I got diagnosed with it around the time they found Spina Bifida Occulta on my spine at L5 since the diagnosis in September of 2004 and then in November in Toronto I got the diagnosis of Fibromyalgia 16 tender points out of 18 between the two major Disabilities I got diagnosed with
• Chronic Fatigue Syndrome
• Overactive Bladder (2x)
• Irritable Bowel Syndrome with Chronic Constipation
• Degrative Disc Disease in Neck - C4-C5 & C5-C6
• Degrative Disc Disease in Back - See Report
• Hiatus Hernia
• Chronic Heart Burn
• Vertigo
• Anxiety (High)
• Scoliosis
so from what you said I totally understand what you mean, i find at times that it is hard to do anything and all I want to do is take the dog out hurry her along and get back into bed. i don't sleep well and after volunteering 1 day it takes me 2 to 3 to get over the movement and work. I go through nights were i don't sleep at all and nights were i am a sleep by 5:00 pm it takes me about an hour to get out of bed in the morning. Even now I am in constant pain and am not getting any medication from my dr to help with it. I am currently on 11 different meds daily and have 5 I use as needed the one I cannot afford to get is 200.00 cdn a month. I would love to know more about your story and what you are going through. Please keep these videos coming. czcams.com/video/WXqxlar387M/video.html