I’ve lost jobs because of my fibromyalgia. Fortunately I work for a woman now who understands fibromyalgia but it’s a retail job and everything hurts all the time and most people just say “get over it, I’m tired too.”
Tired doesn't even cover it for you, I'm sure! I worked in retail a few years ago, and it was exhausting, and I didn't have Fibro yet, so I can't imagine! But I'm glad you found an employer who gets it. I am trying to figure out a job I can do from home or that doesn't involve too much physically.
I had to add to my comment after reading all the others. I didn’t share much of my personal pain struggle, but for sure, I relate to the issues stated in those comments. I have experienced one of my most difficult pain, fatigue, and fibro-fog seasons ever in my 33 year experience with this condition. My heart & prayers go out to all of you!😔
Totally accurate. I need two hours to fully wake up. I’ve had this since I was your age, I’m now 42. I’ve lost so much time because of this condition. More research needs to be done on this. The bank acct one was accurate too, accept mine really has been drained 😂 and I had to file bankruptcy years ago bc of so many lost work days,.
It definitely eats away a lot of your time. I had a flare last week which meant the whole week on the sofa, doing nothing, and now trying to play catch up. Its frustrating at times, but it's important to remember that as long as we find time to do the really important stuff like spending time with people we love and doing things we love, then it's not a big deal.
I’ve been having fibromyalgia pain since at least 2018, kept telling my dr, she didn’t do anything. I finally convinced her to get me a full spine MRI (late 2019) because even though I thought it was fibromyalgia, my dad (who also has Fibro) warned me not to jump the gun and check if there was a herniation or some other spinal problem. There were mild problems, so I went to see an orthopedic surgeon. He asked all my symptoms, areas of pain, etc. and without being told that my dad and youngest sister have fibromyalgia, he told me that the pain and symptoms I was describing didn’t make sense with my mild spine problems, that the pain from those problems wouldn’t present or manifest in the ways I’m describing. He told me, “It sounds like a muscle or nerve disorder, like Fibromyalgia.” Finally someone other than my chiropractor believed me! My primary care physician kept telling me she didn’t think that I had fibromyalgia, but she never did a physical exam to check for it and could never give me a reason for why she didn’t think it was fibromyalgia. She wouldn’t give me a referral to rheumatology, even though that is what the orthopedic surgeon suggested. Eventually I stopped seeing her (a couple months ago) and went to get a general check up from another dr. As soon as I told him about my pain and that I thought it was Fibro he believed me and gave me a referral to Rheum. My first appointment with the rheumatologist was yesterday (12 May ‘21) and as soon as I explained most of my symptoms she did a physical examination and said, “I am diagnosing you with Fibromyalgia.” It wasn’t a shock that it was fibromyalgia and I’m very grateful and happy to finally be diagnosed. I was actually expecting it to take 3 years of tests, like it did with my teenage sister, before I’d get the diagnosis. We are still running a few tests just to be safe, but she is sure and I am sure it’s Fibro. Part of me wants to let my old pcp know that I have in fact been diagnosed with fibromyalgia and that I don’t appreciate that she didn’t believe me or take my pain seriously. I was never drug seeking in the slightest. I asked for a low dose muscle relaxant hoping it’d help, but mostly I just wanted Naproxen Sodium or something that wasn’t heavy duty. I actually have asked not to be given opioids after multiple surgeries just because I want to treat pain with the lightest pain meds possible. Even though I am grateful and happy to finally be diagnosed and even though I knew it was Fibro, it still made me incredibly sad once she said it. At first I wasn’t sure what she just said so I asked, “Wait are you diagnosing me with Fibromyalgia??” When she said, “Yes, I am diagnosing you with Fibromyalgia.” I started crying a mixture of grateful and sad tears. Haven’t had anyone to really console or interact with me since and I really just needed a long, hard, loving hug. I couldn’t even get my dad to answer the phone or call me back. He and my sister should be my biggest resources and they have really left me to figure everything out for myself and it fkn sucks. I already feel so alone in this and just wish I could have them for a support system.
Aw Elizabeth I am so sorry you are feeling this way. That really does suck. I'm glad you advocated for yourself and finally got the right diagnosis, I understand that it is really hard still. You are totally valid, feeling sad and overwhelmed and lonely is absolutely normal. I know its really hard to feel like you have no one to talk to about this. I hope you know there are a lot of us out there living with this condition and that you are not alone. Sending you very gentle and warm hugs! PS: you were diagnosed on Fibromyalgia Awareness day.
I have fibromyalgia and it feels like you are sick, but all the time. I wake up exhausted, full body muscle aches, joint pain, stiffness, brain fog, extreme fatigue. By the evening my pain is horrible without doing to much during the day. I have to take muscle relaxers, nabumetone, buspar, and hydroxazine to be able to sleep at night. Things that didn't use to hurt now hurt. For example an ultrasound. I can't take Cymbalta or gabapentin because of bad reactions and side effects. I am 48 and feel a lot older. I'm on more medication than my 93 year old grandmother. I was diagnosed quickly though from the time I complained to my doctor. I dealt with this for years before I finally complained. People in my life have no idea what it's like.
You are absolutely beautiful! It's so refreshing to see more and more people coming out about their chronic illnesses. I was just diagnosed with fibro over the past summer after a decade of pain and fatigue, among other things. The past decade I was constantly told to "just get over it" or "you are just tired, everyone gets tired" I still hear, from of all people in my life, my mother... if she asks how I'm feeling and I try to tell her, her response is "welcome to my world" I want to scream at the top of my lungs, no it's not the same. But what's the point? If someone doesn't deal with a chronic illness they will never understand. I don't even like really trying to explain things to everyone when they ask. It's so frustrating. My only hope is to speak with others who deal with the same issues, reassurance is my only hope at this point.
Thank you, and thanks for your comment! Welcome aboard :D I know a lot of people go through that, I think personally I have some people who get it and some who don't. There are people out there who will be understanding to what you are going through even if they're not ill themselves, but it might be a long road till you find them sadly. But honestly, you are not alone! All of us here are going through the same, and we know how hard and lonely it is. I hope you find reassurance here
Hello Olga. I found your video helpful. I was diagnosed in 1989 with fibromyalgia by our Doctor who was an excellent diagnostician! He’d just read an article in a medical journal about fibromyalgia. He did the “pain points” test on me. I can’t recall the proper name of that test, but after ruling out other conditions (ie MS, etc.), He concluded it was Fibromyalgia. I was in my early 40s then & I am now soon to be 75. Like you, I have a very supportive Husband (of 57 years!…I had to throw that in.😊), family & a few close understanding friends. I’m very thankful for them! And then there is my best friend and Lord, JESUS. My Husband and I are both followers of Christ & serve in a local church here in our upstate NY community. We’ve been blessed with 6 grandchildren and 3 great grands!! That’s just a little history! Lol. Back to the fibromyalgia video, I related to most of the issues presented in the article you shared with us, except that I am a homemaker. (I’m very thankful for the fact that I’m not in a position where we need another income.) I’m thankful that your video came up on my you tube feed….you have a nice way about you and I’ve subscribed to your channel! I hope your swimming went well …and without any residual affects! I will remember you in my prayers.😊
I believe that I have fibromyalgia so far undiagnosed and untreated. I am slowly learning how to deal with it, I’ve suffered from it since the age of 5 and it progressively gets worse. I am now 50 and I have to tell you that there are very few people who are supportive when you have fibromyalgia. I’m now just beginning to understand that not everyone hurts all the time but my mother had me convinced that I was using my pain as an excuse to be lazy. So I still overdo everything because I think I have to to be like everybody else. Now that I’m learning about fibromyalgia and the symptoms I now know that I am unique in my pain. I explain to everyone I know that I have it and what it does to me but I have yet to find anyone who wants to understand
I’ve had fibromyalgia for 15 years. Just was told I need to keep moving by therapist. I’m 54 , weigh the same I did in high school. I manage my house. Im not working . Declared disabled. I walk everyday. They say cardio is key! Grasping at straws!!!!
#7 I had a situation where I woke up one morning and felt fine. Took a shower, ate breakfast and waited for my friend to come over. 30 mins before she got there, my back started acting up, to where I could barely move. She was coming to help me pack to move. If we would have been going somewhere, I would have had to cancel….with 30 mins notice. Thankfully she was ok with me sitting and directing as she packed. I’m thankful for my friends 💕
The pool is the best for A little relief of your Fibro. I can’t do Aquafit anymore as it exacerbates my Fibro pain, but I find if I just swim lengths slowly, it makes me feel so good. The water is just so gentle on your body and gives a little relief. If you find the Aquafit too hard, try swimming lengths. Hope you don’t suffer too much after your Aquafit. Hugs, Pam
Loved this! I feel like it's so hard to explain because I've been feeling this way for so long writing it off as normal, but now knowing that it's not (especially as my symptoms have worsened) it's hard for me to know what normal really is
Oh I totally get it! I often ask my healthy family and friends if things are normal or just me, cause I feel like every day that passes I am less in tune with what is normal and what isn't.
Speaking of Unicorns, I'm probably one of the very few commenting who is a male with Fibromyalgia. Basically most of what you're saying rings true in my case. I understand that it's not the same for everyone but I can relate. Thank you for sharing this video. You're not alone!
I am soo blessed to have found a job with a boss who is very well educated on chronic illness. I actually was diagnosed with fibro due to a comment he made to me. He stated I had very similar symptoms to MS. I approached my dr with the possibility of it being that all my test were coming back normal. I was quickly referred to a neurologist and was diagnosed after some test and a head MRI (worst feeling for a fibro/claustrophobic sufferer lol)
Yep the shock sensations are real and on top of that my hands will release on there own I have drop so many things. I’m been battling to get an answer for years it’s just recently my doctor said you have Fibromyalgia. It was great to get an answer but after 2 failed back surgeries my nerves in both legs go rampant. I have to nap at least 3 times during the day and up at night sweating and a burning sensation that equals the pain of a sunburn. I hate it!!!!!
I have many the symptoms especially sensitivity to touch. Anything that touches my skin causes widespread body pain with burning, prickling, dull, shocks and warmth to my joints , body aches like I'm sick and the fatigue. Wind from outside hits my skin and I'm whimpering in pain, same with a fan. A sheet of my bed hurts me too. Even the clothes I'm wearing bother me so badly with pain. Laying on my soft bed still hurts me because the pain touch triggers. I'm not diagnosed with fibro yet. I have an appointment with a Rheumatologist on July 11 but I am confident I have it. I tested ANA positive 1:320 titer honeogenous which is pretty high according to my doctor. So that's why I'm being referred but will also ask for fibro testing as well. Any tips to reduce this pain would be greatly appreciated as Tylenol PM doesn't work much 😢
Oh I hope you find a diagnosis soon! It doesn’t do much, but it can help you understand yourself better and have a name to the thing. Mobility aids like walking sticks really help me with the legs giving out thing
@@olgachronics3273 Hi Olga, random Q, but do you often feel the need to arch/crack your back? How was your posture like immediately prior to you getting your Fibromyalgia symptoms? As you definitely know, this is ultimately due to a problem somewhere along the CNS. You mentioned in another vid that you were a dancer & that lower back pain is amongst one of the most persistent symptoms you have (which may explain the dead leg issue). Do you reckon you could've sustained a subtle spinal cord injury or spine misalignment - that can't be seen on an MRI, but that is ultimately the cause to the nerve problems? I feel like I'm on the same boat: IBS, Chest tightness, Widespread pain (mainly upper right back for me), Exhaustion, Sensitivity to light/noise/temp, Muscle twitches/spasms, Insomnia, Depression... I feel like with a dodgy spine one can make a vague connection to a lot of these symptoms. (Maybe not the sensitivity to noise/light/temp - but that could be an extension of the depressiony/anxiety problems) idk. What do you feel about it?
Hi, I tend to crack many of my joints fairly often. My posture was very good as I was a dancer. I do not think it is likely that I sustained an injury to my spinal cord that cannot be seen on MRI, especially as I have been seen by many different specialists and had multiple tests. It is not impossible, but I think it is unlikely in my personal case. As you mentioned yourself, it does not explain all your symptoms, whereas Fibromyalgia does. I know this condition is constantly discredited, shockingly often by medical professionals, but it is a real condition, and it has been extensively proven to exist and explain all of these symptoms. I find it much more likely that we simply have not yet figured out enough about fibromyalgia than that all these people have mysterious invisible spinal injuries. However, if you think that is the case for you, I advise you seek a spinal specialist, like a neurosurgeon or other similar specialty. I have personally been seen by one, and he was the person who diagnosed me with fibro. Good luck.
I do work, I am a nurse and God forbid you call in. It's pretty much not allowed in general..especially if you say you are having a fibro flair up. People look at you like you have 12 eyes and expect you to get back to work. I worked thru so much pain in my back, shoulders, neck and feet that it kept taking my breath away. I worked 12 hours, came home to a hot bath and a glass of wine to relax, and my husband helped me relax with some ocean sounds, it was super sweet. I was asleep by 7:30pm and slept until 12:30 the next day..its ridiculous.
That sounds awful, im sorry you have to do that. I found forcing myself to work through the pain meant the flares just got worse and worse - when I was still at dance school I danced about 6hrs a day, and was in so much pain but kept pushing through, until I was in too much pain to walk. So then I stopped and it took a long time but I learned not to do that. I know I am priviledged that I have someone who supports me no matter what (emotionally, physically and financially), so I could not work until I was better, but i know it's so hard to push through the pain.
Good article. Work is very hard especially as having fibro is a full time task. I get what are you still sick Alot. I've got my review coming up and i get marked the same as everyone else which i think is unfair as i can't work as fast etc our scores are based on production 🤔 i used to be a three star staff im now a one but they made out aload of untrue stuff about me so they don't look bad I'm dreading it its like a character assisnation. Makes me sad as carrying on working is very important to me I've gone from five days to three even that gets too much week to week
Hmm, yes that's what I figured would happen in the majority of places. I think you have to really be lucky to find a workplace that is understanding and cooperative and doesn't make you feel bad about something you can't control.. I'm sorry you have to go through that and hope the review goes as smooth as possible though!
Tania, I can really relate to the anxiety you must feel about your job. I was a teacher and I so stressed out trying to keep up with everyone's expectations. I shared my story on my channel. Check it out when you get a chance!
I just want to know if we fibro patients will ever get back to our normal life like 100% or at least 80%? like is that even possible??!! I've been suffering with this for a couple of years now and I'm kind of losing hope in getting any better, it's like my life is just losing it's colors becoming really dull and depressing
I'm so sorry you are feeling this way. I don't know if it is possible for everyone, some people do, and some people don't. I feel like I have slowly improved over the last year, but I don’t think I will ever be 100% back to my normal life, but I'm okay with that. I think we have to work hard on accepting that this is our life now, and from there see how much improvement we can make. Sending you lots of gentle hugs 🤗
@@michaelhorn9114 That is very true for me too. Over the years I have tried just about every remedy (diet exercise etc.) that was recommended and I always keep as active as I am able, yet my symptoms have increased manifold to the point where I am now housebound for the most part.
Yes it can. I have had heart palps for years that can only be attributed to fibro. Fibro pain and symptoms can also mimic a heart attack or an impending stroke. That has been my real experience over the years.
I also have fibromaylgia and i have heart palpitation chest pain back pain neck pain shortness of breath tingling in arms and legs..legs pain...headache..
I’ve lost jobs because of my fibromyalgia. Fortunately I work for a woman now who understands fibromyalgia but it’s a retail job and everything hurts all the time and most people just say “get over it, I’m tired too.”
Tired doesn't even cover it for you, I'm sure! I worked in retail a few years ago, and it was exhausting, and I didn't have Fibro yet, so I can't imagine! But I'm glad you found an employer who gets it. I am trying to figure out a job I can do from home or that doesn't involve too much physically.
I had to add to my comment after reading all the others. I didn’t share much of my personal pain struggle, but for sure, I relate to the issues stated in those comments. I have experienced one of my most difficult pain, fatigue, and fibro-fog seasons ever in my 33 year experience with this condition. My heart & prayers go out to all of you!😔
Totally accurate. I need two hours to fully wake up. I’ve had this since I was your age, I’m now 42. I’ve lost so much time because of this condition. More research needs to be done on this. The bank acct one was accurate too, accept mine really has been drained 😂 and I had to file bankruptcy years ago bc of so many lost work days,.
It definitely eats away a lot of your time. I had a flare last week which meant the whole week on the sofa, doing nothing, and now trying to play catch up. Its frustrating at times, but it's important to remember that as long as we find time to do the really important stuff like spending time with people we love and doing things we love, then it's not a big deal.
I’ve been having fibromyalgia pain since at least 2018, kept telling my dr, she didn’t do anything. I finally convinced her to get me a full spine MRI (late 2019) because even though I thought it was fibromyalgia, my dad (who also has Fibro) warned me not to jump the gun and check if there was a herniation or some other spinal problem. There were mild problems, so I went to see an orthopedic surgeon. He asked all my symptoms, areas of pain, etc. and without being told that my dad and youngest sister have fibromyalgia, he told me that the pain and symptoms I was describing didn’t make sense with my mild spine problems, that the pain from those problems wouldn’t present or manifest in the ways I’m describing. He told me, “It sounds like a muscle or nerve disorder, like Fibromyalgia.”
Finally someone other than my chiropractor believed me! My primary care physician kept telling me she didn’t think that I had fibromyalgia, but she never did a physical exam to check for it and could never give me a reason for why she didn’t think it was fibromyalgia. She wouldn’t give me a referral to rheumatology, even though that is what the orthopedic surgeon suggested. Eventually I stopped seeing her (a couple months ago) and went to get a general check up from another dr. As soon as I told him about my pain and that I thought it was Fibro he believed me and gave me a referral to Rheum. My first appointment with the rheumatologist was yesterday (12 May ‘21) and as soon as I explained most of my symptoms she did a physical examination and said, “I am diagnosing you with Fibromyalgia.”
It wasn’t a shock that it was fibromyalgia and I’m very grateful and happy to finally be diagnosed. I was actually expecting it to take 3 years of tests, like it did with my teenage sister, before I’d get the diagnosis. We are still running a few tests just to be safe, but she is sure and I am sure it’s Fibro.
Part of me wants to let my old pcp know that I have in fact been diagnosed with fibromyalgia and that I don’t appreciate that she didn’t believe me or take my pain seriously.
I was never drug seeking in the slightest. I asked for a low dose muscle relaxant hoping it’d help, but mostly I just wanted Naproxen Sodium or something that wasn’t heavy duty. I actually have asked not to be given opioids after multiple surgeries just because I want to treat pain with the lightest pain meds possible.
Even though I am grateful and happy to finally be diagnosed and even though I knew it was Fibro, it still made me incredibly sad once she said it. At first I wasn’t sure what she just said so I asked, “Wait are you diagnosing me with Fibromyalgia??” When she said, “Yes, I am diagnosing you with Fibromyalgia.” I started crying a mixture of grateful and sad tears.
Haven’t had anyone to really console or interact with me since and I really just needed a long, hard, loving hug. I couldn’t even get my dad to answer the phone or call me back. He and my sister should be my biggest resources and they have really left me to figure everything out for myself and it fkn sucks. I already feel so alone in this and just wish I could have them for a support system.
Aw Elizabeth I am so sorry you are feeling this way. That really does suck. I'm glad you advocated for yourself and finally got the right diagnosis, I understand that it is really hard still. You are totally valid, feeling sad and overwhelmed and lonely is absolutely normal. I know its really hard to feel like you have no one to talk to about this. I hope you know there are a lot of us out there living with this condition and that you are not alone. Sending you very gentle and warm hugs!
PS: you were diagnosed on Fibromyalgia Awareness day.
@@olgachronics3273 thank you, I very much appreciate your kind words!🥰
That’s pretty cool that it was fibromyalgia Awareness Day!
I have fibromyalgia and it feels like you are sick, but all the time. I wake up exhausted, full body muscle aches, joint pain, stiffness, brain fog, extreme fatigue. By the evening my pain is horrible without doing to much during the day. I have to take muscle relaxers, nabumetone, buspar, and hydroxazine to be able to sleep at night. Things that didn't use to hurt now hurt. For example an ultrasound. I can't take Cymbalta or gabapentin because of bad reactions and side effects. I am 48 and feel a lot older. I'm on more medication than my 93 year old grandmother. I was diagnosed quickly though from the time I complained to my doctor. I dealt with this for years before I finally complained. People in my life have no idea what it's like.
That sounds really tough, I'm sorry. You're not alone though :)
You are absolutely beautiful! It's so refreshing to see more and more people coming out about their chronic illnesses. I was just diagnosed with fibro over the past summer after a decade of pain and fatigue, among other things. The past decade I was constantly told to "just get over it" or "you are just tired, everyone gets tired" I still hear, from of all people in my life, my mother... if she asks how I'm feeling and I try to tell her, her response is "welcome to my world" I want to scream at the top of my lungs, no it's not the same. But what's the point? If someone doesn't deal with a chronic illness they will never understand. I don't even like really trying to explain things to everyone when they ask. It's so frustrating. My only hope is to speak with others who deal with the same issues, reassurance is my only hope at this point.
Thank you, and thanks for your comment! Welcome aboard :D I know a lot of people go through that, I think personally I have some people who get it and some who don't. There are people out there who will be understanding to what you are going through even if they're not ill themselves, but it might be a long road till you find them sadly. But honestly, you are not alone! All of us here are going through the same, and we know how hard and lonely it is. I hope you find reassurance here
Hello Olga. I found your video helpful. I was diagnosed in 1989 with fibromyalgia by our Doctor who was an excellent diagnostician! He’d just read an article in a medical journal about fibromyalgia. He did the “pain points” test on me. I can’t recall the proper name of that test, but after ruling out other conditions (ie MS, etc.), He concluded it was Fibromyalgia. I was in my early 40s then & I am now soon to be 75. Like you, I have a very supportive Husband (of 57 years!…I had to throw that in.😊), family & a few close understanding friends. I’m very thankful for them! And then there is my best friend and Lord, JESUS. My Husband and I are both followers of Christ & serve in a local church here in our upstate NY community. We’ve been blessed with 6 grandchildren and 3 great grands!! That’s just a little history! Lol. Back to the fibromyalgia video, I related to most of the issues presented in the article you shared with us, except that I am a homemaker. (I’m very thankful for the fact that I’m not in a position where we need another income.) I’m thankful that your video came up on my you tube feed….you have a nice way about you and I’ve subscribed to your channel! I hope your swimming went well …and without any residual affects! I will remember you in my prayers.😊
I believe that I have fibromyalgia so far undiagnosed and untreated. I am slowly learning how to deal with it, I’ve suffered from it since the age of 5 and it progressively gets worse. I am now 50 and I have to tell you that there are very few people who are supportive when you have fibromyalgia. I’m now just beginning to understand that not everyone hurts all the time but my mother had me convinced that I was using my pain as an excuse to be lazy. So I still overdo everything because I think I have to to be like everybody else. Now that I’m learning about fibromyalgia and the symptoms I now know that I am unique in my pain. I explain to everyone I know that I have it and what it does to me but I have yet to find anyone who wants to understand
I have been untreated for 25 years since my diagnosis. (Heavy sigh).
I just shared this with my husband so he has a better understanding of fibromyalgia.
Aw thank you! I hope it helps :) Let me know what he thinks!
I’ve had fibromyalgia for 15 years. Just was told I need to keep moving by therapist. I’m 54 , weigh the same I did in high school. I manage my house. Im not working . Declared disabled. I walk everyday. They say cardio is key! Grasping at straws!!!!
Oh I'm sorry to hear that. I have found gentle exercise to help me improve, walks, water aerobics, etc. I hope you find some relief soon!
#7 I had a situation where I woke up one morning and felt fine. Took a shower, ate breakfast and waited for my friend to come over. 30 mins before she got there, my back started acting up, to where I could barely move. She was coming to help me pack to move. If we would have been going somewhere, I would have had to cancel….with 30 mins notice. Thankfully she was ok with me sitting and directing as she packed. I’m thankful for my friends 💕
that sounds like an amazing friend you have there!
The pool is the best for A little relief of your Fibro. I can’t do Aquafit anymore as it exacerbates my Fibro pain, but I find if I just swim lengths slowly, it makes me feel so good. The water is just so gentle on your body and gives a little relief. If you find the Aquafit too hard, try swimming lengths. Hope you don’t suffer too much after your Aquafit. Hugs, Pam
Loved this! I feel like it's so hard to explain because I've been feeling this way for so long writing it off as normal, but now knowing that it's not (especially as my symptoms have worsened) it's hard for me to know what normal really is
Oh I totally get it! I often ask my healthy family and friends if things are normal or just me, cause I feel like every day that passes I am less in tune with what is normal and what isn't.
Thanks Olga! Great video! Newly subscribed! Hearing how closely our stories are I dont feel as alone. Stay Safe lady!
That's amazing, I'm so glad to help!
Speaking of Unicorns, I'm probably one of the very few commenting who is a male with Fibromyalgia. Basically most of what you're saying rings true in my case. I understand that it's not the same for everyone but I can relate. Thank you for sharing this video. You're not alone!
I LOVE this! I was just wondering how I could get my spouse to see how I feel everyday. Thank you for sharing!
You're welcome! I'm glad I could help :)
I am soo blessed to have found a job with a boss who is very well educated on chronic illness. I actually was diagnosed with fibro due to a comment he made to me. He stated I had very similar symptoms to MS. I approached my dr with the possibility of it being that all my test were coming back normal. I was quickly referred to a neurologist and was diagnosed after some test and a head MRI (worst feeling for a fibro/claustrophobic sufferer lol)
That's awesome! I was okay during my MRI's, I almost fell asleep and everything. But I struggle getting blood drawn and most people dont lol
Yep the shock sensations are real and on top of that my hands will release on there own I have drop so many things. I’m been battling to get an answer for years it’s just recently my doctor said you have Fibromyalgia. It was great to get an answer but after 2 failed back surgeries my nerves in both legs go rampant. I have to nap at least 3 times during the day and up at night sweating and a burning sensation that equals the pain of a sunburn. I hate it!!!!!
I wish I could find this translated into Spanish so I could send it to my family.
That's very sweet but i don't know spanish, im sorry!
I have many the symptoms especially sensitivity to touch. Anything that touches my skin causes widespread body pain with burning, prickling, dull, shocks and warmth to my joints , body aches like I'm sick and the fatigue. Wind from outside hits my skin and I'm whimpering in pain, same with a fan. A sheet of my bed hurts me too. Even the clothes I'm wearing bother me so badly with pain. Laying on my soft bed still hurts me because the pain touch triggers. I'm not diagnosed with fibro yet. I have an appointment with a Rheumatologist on July 11 but I am confident I have it. I tested ANA positive 1:320 titer honeogenous which is pretty high according to my doctor. So that's why I'm being referred but will also ask for fibro testing as well. Any tips to reduce this pain would be greatly appreciated as Tylenol PM doesn't work much 😢
8:51 Minutes in and I swear I am watching myself 😭😭😭
I hope that's a good thing hehe
Hope your aqua went well my local pool water is too cold i can't cope with it
It did go well! I was out of business yesterday though, and still kind of in pain today, but the water was surprisingly warm!
Yes! My limbs give out too! I'm getting tested by doctor's to try to figure out if I have it, though I've figured that I do have fibromyalgia.
Oh I hope you find a diagnosis soon! It doesn’t do much, but it can help you understand yourself better and have a name to the thing. Mobility aids like walking sticks really help me with the legs giving out thing
@@olgachronics3273 Hi Olga, random Q, but do you often feel the need to arch/crack your back? How was your posture like immediately prior to you getting your Fibromyalgia symptoms?
As you definitely know, this is ultimately due to a problem somewhere along the CNS. You mentioned in another vid that you were a dancer & that lower back pain is amongst one of the most persistent symptoms you have (which may explain the dead leg issue). Do you reckon you could've sustained a subtle spinal cord injury or spine misalignment - that can't be seen on an MRI, but that is ultimately the cause to the nerve problems? I feel like I'm on the same boat: IBS, Chest tightness, Widespread pain (mainly upper right back for me), Exhaustion, Sensitivity to light/noise/temp, Muscle twitches/spasms, Insomnia, Depression... I feel like with a dodgy spine one can make a vague connection to a lot of these symptoms. (Maybe not the sensitivity to noise/light/temp - but that could be an extension of the depressiony/anxiety problems) idk. What do you feel about it?
Hi, I tend to crack many of my joints fairly often. My posture was very good as I was a dancer.
I do not think it is likely that I sustained an injury to my spinal cord that cannot be seen on MRI, especially as I have been seen by many different specialists and had multiple tests. It is not impossible, but I think it is unlikely in my personal case. As you mentioned yourself, it does not explain all your symptoms, whereas Fibromyalgia does.
I know this condition is constantly discredited, shockingly often by medical professionals, but it is a real condition, and it has been extensively proven to exist and explain all of these symptoms. I find it much more likely that we simply have not yet figured out enough about fibromyalgia than that all these people have mysterious invisible spinal injuries.
However, if you think that is the case for you, I advise you seek a spinal specialist, like a neurosurgeon or other similar specialty. I have personally been seen by one, and he was the person who diagnosed me with fibro.
Good luck.
So fibromyalgia is on my record for now, however I am getting tested to see if I have other issues as well.
I do work, I am a nurse and God forbid you call in. It's pretty much not allowed in general..especially if you say you are having a fibro flair up. People look at you like you have 12 eyes and expect you to get back to work. I worked thru so much pain in my back, shoulders, neck and feet that it kept taking my breath away. I worked 12 hours, came home to a hot bath and a glass of wine to relax, and my husband helped me relax with some ocean sounds, it was super sweet. I was asleep by 7:30pm and slept until 12:30 the next day..its ridiculous.
That sounds awful, im sorry you have to do that. I found forcing myself to work through the pain meant the flares just got worse and worse - when I was still at dance school I danced about 6hrs a day, and was in so much pain but kept pushing through, until I was in too much pain to walk. So then I stopped and it took a long time but I learned not to do that. I know I am priviledged that I have someone who supports me no matter what (emotionally, physically and financially), so I could not work until I was better, but i know it's so hard to push through the pain.
@@olgachronics3273 it is, and thank you so much! I am glad you have a great support system. That helps 100%!
Good article. Work is very hard especially as having fibro is a full time task. I get what are you still sick Alot. I've got my review coming up and i get marked the same as everyone else which i think is unfair as i can't work as fast etc our scores are based on production 🤔 i used to be a three star staff im now a one but they made out aload of untrue stuff about me so they don't look bad I'm dreading it its like a character assisnation. Makes me sad as carrying on working is very important to me I've gone from five days to three even that gets too much week to week
Hmm, yes that's what I figured would happen in the majority of places. I think you have to really be lucky to find a workplace that is understanding and cooperative and doesn't make you feel bad about something you can't control.. I'm sorry you have to go through that and hope the review goes as smooth as possible though!
Tania, I can really relate to the anxiety you must feel about your job. I was a teacher and I so stressed out trying to keep up with everyone's expectations. I shared my story on my channel. Check it out when you get a chance!
I just want to know if we fibro patients will ever get back to our normal life like 100% or at least 80%? like is that even possible??!! I've been suffering with this for a couple of years now and I'm kind of losing hope in getting any better, it's like my life is just losing it's colors becoming really dull and depressing
I'm so sorry you are feeling this way. I don't know if it is possible for everyone, some people do, and some people don't. I feel like I have slowly improved over the last year, but I don’t think I will ever be 100% back to my normal life, but I'm okay with that. I think we have to work hard on accepting that this is our life now, and from there see how much improvement we can make. Sending you lots of gentle hugs 🤗
They say most people just get worse. Very true for me.
@@michaelhorn9114
That is very true for me too. Over the years I have tried just about every remedy (diet exercise etc.) that was recommended and I always keep as active as I am able, yet my symptoms have increased manifold to the point where I am now housebound for the most part.
@@LadyDee150 I rarely leave my house.
Does fibro cause heart palps as well
Elizabeth Davidson I think it can do, and it’s really common to cause changes in heart rate, both resting heart rate and when we are moving.
Yes it can. I have had heart palps for years that can only be attributed to fibro. Fibro pain and symptoms can also mimic a heart attack or an impending stroke. That has been my real experience over the years.
I also have fibromaylgia and i have heart palpitation chest pain back pain neck pain shortness of breath tingling in arms and legs..legs pain...headache..
Is you elizabeth davidson having heart palps also...and you are diagnosed with fibromaylgia or not