Fibromyalgia: Survival Tips! | YvesyM
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- čas přidán 5. 07. 2024
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Hi Everybody!
Sooooo. Chronic pain is a leading cause of Disability worldwide. It refers to pain experienced for more than 6 months and can be progressive ie.worsen with time OR it can have no predictable pathology.
Here are 10 of the BEST tips for managing pain, based on years of experiencing Chronic Pain. This includes disorders such as Arthritis, Sciatica, Fibromyalgia, neuropathy, Spinal Stenosis, sports injuries etc.
See how you get on with these tips & be sure to let me know your thoughts in the comments!
Take Care,
Yvonne
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for those, like me, who need the tips written out.
1. Accurate Diagnosis
2. Manage mood and Mental Health
3. Understand Pain Patterns (triggers)
4. Accept Pain
5. Stop Reacting (don't fight the pain)
6. Exercise caution with support groups/forums
7. Complain (advocate for yourself)
8. Regular Exercise and gentle stretching
9. There is no cure
10. Preventative analgesics
Thank you so so much you legend😃❤️💪🏼
I was so relieved to hear that it's not just me who feels that way about support groups. I went a couple of times, but i found them SOOOOO disheartening and depressing, like it felt like a competition of who's the worst, and I went there already feeling kind of discouraged. It was one of the worse ideas. I think it would have been better if they'd had like a counsellor to keep people on some kind of theme or had a guest speaker or a topic or SOMETHING. But i felt so guilty for thinking that way, like as if i shouldn't think that because it's not very kind and supportive, but honestly i just wanted to scream! I was hoping to find some kind of hope, but instead it just made me feel like oh yes, it really is that bleak, probably even bleaker actually...!!! Your last point was especially helpful to hear. I always wait until i'm desperate to take anything for similar reasons to you, but I never really thought about it that way round - that the sooner i take them the less i would actually end up taking in the end! Thank you for all of this - it's so important for people to know. I wish I had heard this all a lot sooner myself. xx
+Punk Kimono yep, I have seen that competition on FB pages come to think of it..SUCH an unhealthy mindset!!! I just read your comment again and I'm SO glad the video was helpful & thought-provoking for you!! And the last point is something quite new for me too :)
after suffering from fibromyalgia for over 10 years I finally found tumeric 1 teaspoon in milk or water with black pepper that's what's stops the pain but it has to be taken everyday. Tumeric helps in many other health related issues. Please check into it and try it it works right away and it will not harm you if it does not work for you. PS you can add honey to taste better. I am also diabetic - high cholestrol- high blood pressure.
G-d bless Ayurveda my sister 🙏🏼
Turmeric with the black pepper is amazing. Saw a video on it, with some ginger & cinnamon too... excellent
Love this video! I especially liked your #10 tip! Both my neurologist and my pharmacist have told me that it is important for someone with Fibromyalgia to keep a steady flow of my pain meds in my system, otherwise I was always "chasing" my pain relief. This is why I am on both an ER (extended release) and IR (immediate release) form of Opana (Oxymorphone). Once I learned this important fact, my life became so much better! As you mentioned, I will always have pain, but if I wait until my pain becomes unbearable to take something for it...it's too late!
Keep up the good work!
Gentle hugs,
Laura 🌻
Yessssss! Even you reminding me about this today has helped me!! Lol, so thank YOU 😁 XoXo Yvonne
Laura, I was lucky to have a physician who told me early on to keep a baseline of my pain medication on board. This was after it took a few trials of meds to find what worked best for me. It makes a difference in my ability to work. Being a single mom, I have to support my daughters and me.
Remember I'm just like you guys, I need to practice these Survival Tips too and of course it’s not always easy! I have my bad days where I feel defeated and that’s OK. It’s always a ‘work in progress’ type thing xx
YvesyM - That is cool. Thanks for being so voluntary helpful. You help me understand A friend who has this unfortunate disease.
Did you have an MRI w/ contrast dye prior to having this condition
@@frontlinemedia4270 I have had an mri w contrast before it all started.
@@jamiem5364 same here, I believe I was poisoned by gadolinium. I've been trying everything to remove this from my body.
@@frontlinemedia4270 I cant say it was from that, i feel like the chronic pain from back injuries is maybe what led me to end up with fibro but im just guessing.
I just discovered your channel, Im so glad I did as I was recently diagnosed with fibro. I have had chronic pain for quite a few years ever since my first back injury but just got told its actually fibro not just chronic pain by the rheumatologist.
I didn't see your old channel but watching your last vid Im glad to hear you managed to get yourself into a better place!
Number 10 has been my biggest issue for a long time as I tend to put up with the pain until its unbearable which as u know makes it so much harder to get back to a manageable level. I have had crohn's disease half my life plus a bunch of other things like degenerative disk disorder, schulmans disease etc.
Crohn's makes it alot harder with meds as my stomach just cant handle alot of drugs like anti-inflammatories and I did get to the point with my back pain I was sick of popping pills all day every day. I've had alot of bad reactions from drugs in the past lyrica made me a brain dead zombie others were hives or itching like mad or they just did nothing like endone.
I think ive been in denial of just how much pain ive been for the last 4 or 5 years but starting to realize it is bad and I need to stop the pushing myself too hard on good days, then crashing hard and actually just rest when I need to. Probably just being a stubborn man but I just started taking palexia sr not sure if the stomach likes it yet tho.
Not sure why I told u all of that lol
I'm glad you talked about there is no cure for fibromyalgia. I have it and I keep trying to find something that will take it away. I guess we all would like to get rid of it.
Yeah. Buying in to supplements and diets and gadget's should be done with no expectations. However that's not to say a better diet etc won't improve your overall health,just not the Fibromyalgia. And we gotta maximise our general health as much as possible considering the pressure our body is under
Thank you Yvesy for this video,, your lovely charismatic presence, and all the tips given with intelligent articulation. Several things caught my attention:
-getting a correct diagnosis. Yes it is vital to have everything checked before coming to a fibromyalgia diagnosis. I would add that it is vital to continue this diagnosis process throughout the years, that means not necessarily attributing new or developing issues to the fibro but having them thoroughly examined. Repeatedly if necessary. Fibro can have so many varied effects on the system, that is easy to dump every thing in the ‚Fibro bucket‘, from urinary tract pain or urgency, to back pain or as in my case blood sugar issues. I have been crashing after midday meals for several years, and my blood sugar has been found to be ok. I had to fight with my GP again to get another test, when he claimed that this has been repeatedly done and shown nothing, so he’s suggesting possible reaction to medicine (as if this would send me into instant heavy sleep after lunch, or after eating something sweet), or just another casualty of the fibro. I do know there is a sugar issue, as this crash always follows food.. We have to trust our instincts and fight for proper care, which can be very challenging with the way we feel. Low and behold, the blood test I finally convinced him to do is now showing a blood sugar issue, and next week I go back for further testing. I also had digestive problems, abdominal pain and cramping, which for years I attributed to Fibros typical IBS syndrome. The first colonoscopy exam confirmed gastritis but nothing more severe. The symtoms were getting worse, with sudden diarrhea and increased pain an soreness, so after a year I had to insist on another exam. They found evidence of Crone‘s disease, which comes with dietary change and medicine. Important to know, and these symptoms did not at all belong in the ‚fibro bucket.‘
I myself often feel conflicted about other physical issues which come up. It is frequently not clear if they are part of the whole fibromyalgia syndrome, or if they indicate another new issue which needs to be investigated.
My point is-in the diagnosis part of your 10 point plan, you might want to add that ongoing diagnosis is vital for medical issues which show up along our journey. We mustn’t suffer needlessly with something that has a treatment. But it can be challenging for us to determine when we‘re dealing with a separate issue. Good instincts and looking for patterns are our roadmap, making notes to help us recognize them. Dealing with the doc can also be challenging-when he/she is doing their best to treat in the way they’ve been trained, i.e. no unnessary repetition of tests, etc. We can explain that „I realize that this issue would normally not be tested again so soon, but I have really observed a pattern when it occurs, and i feel strongly that its not a normal thing I should just accept, and that there is a clear cause that very likely is separate from my fibromyalgia. I want to explore testing again, it would be great if I could get some relief from this.“
-The other thing I would like to touch upon, is something very controversial in Fibro help.
Keyboard Barreryjust gave out´ will continue with my second And last thought to share, regarding exercise, very contested among fibro sufferers.
Thank you! Loved your advices, they are really true, sincere and helpful. The best I have found on line so far. I am writing from Dominican Republic. It’s my compromise to share your 10 wonderful tips with others science so many of us need to hear them again and again every once in a while or rather daily. Merry Christmas to you! 🎄🎄🎄
It's 2yrs later and I am watching this video for the 1st time, also my 1st time watching you and I have subscribed. I appreciate the great tips and honest advice. Fibromyalgia is such a controversial subject especially with those who have no idea what it is exactly or what we go thru on a daily basis. I will definitely be watching more of you. Thank you!
thanks for your comment & sub hon :* you're right about it being controversial but at least that's decreasing as time goes on xx
I paused the video to write this comment when you mentioned you haven't been pain free in 10 years. Have you tried compression wear? I started wearing compression wear last august, and it has been a game changer. It doesn't make the pain go away, but it seems to be 80% effective against pain from physical activity. As the pain increases, I just put on more layers of compression wear until the compression hurts, and then I have to "reset" it by not wearing it for a couple days and taking it easy.
I'm a pre-med student with a long path ahead of me, so I was truly despairing and ready to give up on my dreams before I tried compression. But with this way to control my pain, I feel like I can do it. I used to picture myself in agony after a 40-hour shift in the hospital, but now I feel like I have a secret weapon to help. I even recently got into a scholarship program where I'll have to be on my feet all day working with patients, and I know I can do it because of the compression wear.
Sorry to write a book, I just wanted to share what I've learned. I sincerely hope you can give it a try.
fibro m. is a severe class 2 malocclusion and you have one thats why you have lots of pain in the body
I have an appointment with my doctor soon to discuss my fibro. Detials are boring, but my diagnosis is fairly recent and my previous doctor was....less than helpful. As a result I am going to ask this new doctor to start from scratch with me. To that end I have been doing research into fibro to really pinpoint my biggest issues and see if we can deal with them first, even if we just treat the symptoms while we run whatever tests or diagnostic criteria that needs to be done. To this end I have a notebook FILLED with information about fibro in general and my personal troubles with it. I found your vidoes recently and they have helped me SO much. I haven't even been to the doctor yet, but thanks to you I feel like I'm actually ready for it this time. Thank you so much for being open enough about your condition to put it out there on the internet for other sufferers to feel less alone and also learn more about the condition and how to manage it. You're utterly fantastic
Thank you so much for making these videos. I've been dealing with fibro-like symptoms for years and have yet to find an MD to really take me seriously in helping me find an official diagnosis. I'm constantly being told that "I'm too young to feel like that" and yet all of these pain and other symptoms are really real.
What country do you live in? That sounds plain stupid!!!
I live in the U.S. and it seriously is. I'm going to definitely take your advice and not give up on finding a doctor who will hopefully help me find answers. Thank you again for being so open about fibro. It definitely helps to know that there's someone else in the world who knows how it really feels like and that it isn't all just in my head.
I can assure you that youre NOT alone and what youre experiencing is real and youre not crazy!! becoz seriously, u begin to doubt yourself dont u?! persistence is the key! so keep on trying to find a GOOD doctor who is up to date with modern, scientific medicine
There is no such thing as being too young. I have fibromyalgia and was diagnosed when I was 43(in hindsight my symptoms started many, many years earlier)and have a daughter who was diagnosed a year ago at age 14.
I was just diagnosed with Fibro 2 weeks ago. Thank you for this video
Thank you so much for taking the time to film and upload your videos. I have been suffering with chronic pain for many years and have recently been diagnosed with Fibromyalgia. I am struggling to accept the diagnosis and to make decisions about medication and how to help myself. I have been referred to a CFS and Chronic Pain Clinic and am hoping that this will help me to navigate the best way of helping me to manage this condition. I have been prescribed Amitryptiline, which I have resisted taking to date. However, I am slowly starting to accept that I need to be open to exploring medication and finding what works for me. Listening to your experiences has really helped.
Michelle McCarthy I'm glad this video has made you feel more open to treatment options.i personally feel that any tool that has reasonable evidence to help with Fibromyalgia symptoms should be considered. amytriptyline is one of the most commonly prescribed medications for chronic pain.it can also help with sleep, which has a direct effect on pain. Anyway its great you're going to a clinic! Best of luck - get as much as you possibly can from the experience and use it to your advantage! Xx🙌😀❤️
I just got officially diagnosed yesterday and I am having a hard time dealing with the whole "new normal". Staying positive and getting myself to go outside lately is an uphill battle but this video really put some things into perspective for me. I need to work towards accepting that the pain isn't going away.. thank you for the extremely helpful video, I will be watching your other videos ^____^
Thank you darling, I'm so glad it helped in some way and to be honest I would have loved if I knew what I know now at the beginning. The start is always so difficult but always feel free to check in here with me. I have another video about support that might be helpful for your family etc. Take good care honey
I feel your pain....literally. I'm so scared that the pain at some point is going to get to the point that I cant handles it.... it scares me too death
Janea Lowe - You’re three years in now. How is it going?
@@vlksgaming7876 I have had the same thought myself. 25 years of this and I found out it only FEELS like I'm dying. The mental part is the hardest. You are in my prayers. God bless.
@@glynnisthomas9165 what tools did you use to help with the mental part?. i dont even have fibro, just a herniated disc and i am really interested in how one deals with pain as i have a very low tolerance for it. i think pain sufferers have alot to teach us to stay sane and strong thanks💚
thank you for sharing your story and fibro experience. You are a beautiful person inside and out.It is so frustrating to spend years trying to figure out what is wrong with me while the dr's give me the constant run around. The pain is literally taking my life away and draining my energy daily. I just recently got diagnosed. I have to make an appointment with a pain management specialist to discuss treatment now. I just hope and pray that the dr will help me and not label me a pain med seeker. I just want to get some releif and try to enjoy life again. I would love to have the energy to clean my house top to bottom and feel somewhat normal again.
Your life right now sounds pretty miserable and hopeless... Though it really isn't hopeless of course, but you seem a bit hopeless. And it's impossible to feel OK when you're in constant pain, it's just exhausting. I promise it DoES get better, slowly, but surely. Always feel free to check in with me at any point if you need to chat. Keep the faith :)
Thank you for making this video. It was very helpful to me. It sounds weird but it helps knowing that you’re not the only one out there that is questioning their pain and themselves.
Your last point was well made. It’s been the hardest one for me too.
My pleasure -Im really glad I could help any tiny bit. It can be very isolating for sufferers and sometimes it's really helpful hearing somebody say the things we probably already know but aren't accessable..Hope your doing ok and hanging in there🙂
BEST IVE HEARD‼️‼️‼️
Great. I'm a guy who has had (and been properly diagnosed almost 20 years ago) w/ FM for years and I would add that besides Dr. Rx meds and light, regular exercise - which is very important, I have also found some small relief (mainly from pain), using simple items and methods like:
heating pads, hot showers, ice, eating healthy, drinking plenty of water, massages, stress reduction - whatever that means for you personally, and trying to get better sleep - which can mean going to bed earlier or on a regular schedule, using more pillows, and limiting caffeine. I also keep a daily record of my issues for later review before I see my dr. (every 3 mo.), that I call my "Activity, Diet & Health Diary". Fibromyalgia and/or some meds makes me forgetful, so writing down any issues and patterns, pain levels, improvements and questions in a notebook helps me focus my questions later. And don't forget - just because you have this disease, doesn't mean you won't get something else. Thanks for your channel and I wish you all well!
Oh my stars. I just came across your video. Thank you so much. I hope you are doing well. It took many doctors 7 years for one of them to say it was Fibromyalgia. Because of this time period it has taken a toll on my body. I am now trying to get may body in better shape and it is hard. It is even hard on my family as I have had to not work and be at home. Some of my family do not understand the pain and believe I am just lazy. I hope one day they will see and come to realize, but until then I have to keep a positive self. Thanks again for your video.
melsfavs1 you are amazing for keeping focused on doing your best to better your body,despite skepticism from your family.sometimes it can be the people closest to us that can't see or won't see,what's right in front of them.hope this video helped a little X
What a lovely young woman you are! As well as an Empathetic heart. Thank you for sharing your practical and useful insight. 🌹
Mags L bless you😘Thank you so much
🌺
I'll talk to you soon, keep the chin up! "
I needed to hear this today ❤
Thanks for the advice and information. I have seen those "cure fibromyalgia " videos and I think they are full of crap. Keep your videos coming!
Thank you for the video, I’ve had fibromylgia for 12 years and right know they are saying pain meds don’t work for fibro,so I’m in the process of being decreased every month, i am really worried about what lies ahead for me, just wondering if you might have any other tips. Again it was so nice to hear an honest account from someone that really knows what people are going through.again thank you and be well.
Thank you so much,I am on Effexor and gabapentin but that’s only because I see a dr for my bi-polar and he gave them to me so that helps a little.
Hi Yvesy M i just came accross your video. I.am having a bad weekend with chronic pain. You have given some great tips. For me i have been diagnosed with Fibromyalgia for more than twenty years this hit my life in my early 30s. There was not much awareness about this invisable illness and i have found for myself that the pain does not go away it does not get any easier. My main history was i have a injury in my lower back and it took doctors specialist a long time to find out what was really going on with me. The worst of it i just could not walk at all for three months. I was stuck in my bed groaning in pain. Intense pain. And i could not go back to my fulltime job. My name means work and industrious. Lol thats my truth. And it made me very sick. True wheelchair two sticks. Thats what does happen together with as yoj say other artists and bone issues. I am living every day. With this and i have accepted. That it is long term. I did have a great painclinic and i had intense therapy for ten weeks. I just make room for it in my body. It can get you down. But my late mother told me to put my trust in God and i.have been doing just that. I have no friends. You find who are as time goes by but i am lucky to say this i raised two beautiful daughters with this terrible illness together with my late mum help she came over to stay with me right on time it was God who sent her. Because it was 2nd June one day before my birthday i had bandage on my left leg and i could not do a thing but lay in bed. I am a overcommer and i believe you just got to try one step at a time when this first hits your life. And keep fighting keep listening to your body. And do not over do things it can make you have set backs. Make yourself happy in your own way. I dont socialise at all. My small circle of love ones who love me knows me plus God gave me three beautiful grandkids. And that is keeping me today December 2nd 2019. Praise God i am still standing i am here. So my words to you and the millions of sufferers. You can live just be gentel with yourself. And avoid anything you feel may make you feel uncomfortable. Your video was informative. Take care and peace be with you 💜😊🙏🙏
Love your videos. So informative and insightful. You always get it right. Boom keep it up!
+Trevor Fradgley thanks a million! That means a lot! Stay tuned because there are plenty more videos in the pipeline :)
I have RA and fibro, and with healthcare background. This is so honest and helpful. Thank you.
Those were great tips, thanks for posting!I don't have any friends or relatives with Fibro.. Can you do a video on maybe how to help your family and friends understand this condition?One of my close relatives told me once that I "just wasn't trying hard enough to deal with the pain" because I had to leave work early a couple times one week. :(
Take care! Have a great week :)
Goodness....that sort of comment can be gut-wrenching. Did u see my first video on Fibromyalgia? A few people said they showed it to their families...let me know what u think about that one. And if u still feel I could help with another video then let me know and I'll try. Take good care hon Xxx
Yup, I just re-watched it and that will be perfect :)
Thanks!
+classiclymodern that's great :)
YvesyM I'm glad I found you. Since I was diagnosed about 2 years ago I felt so alone with this condition. I've never heard about it in my circles. So I was the one one to introduced it to my family and friends and the most difficult one my Boss. Hard time there! I'm down to only one day work but it's all I can do. I had a premonition to prepare myself for the worst and with help got on S S disability. I can support myself which is a relief. I also knew I couldn't function til I eased this pain. It's hard here in the States to get pain meds but I fought for it and I got a Butrans patch from a doc that treats drug addicts. I'm my own advocate now that I've been passed around ignored & looked at like I have 3 heads. Now I use The patch Cymbalta & soft tissue massages by my chiropractor and whatever else I deem fit. I've finally acepted it and try to live a normal life. I'm doing pretty good thank you for being there for us. Maybe my story can help somebody too. Much love to everyone out there
Very informative video! Thank you for making this
Yes, very helpful, especially #10. I have to stay ahead of the pain with my meds. And my wife makes sure I do. If I get behind I pay the price and I suffer as a result. Thanks as always for sharing.
Well said ! thanks for taking the time.
Yes! So glad to hear that someone else felt that a "support group" is probably the last thing a person needs when they suffer from chronic pain. Perhaps, like you, one person with whom you can confide is all that is necessary. I know that personally, I don't want to be sitting around wringing my hands over what I live with every day. These were helpful tips. You really do have to figure things our for yourself with maybe a few helpful tips along the way. Cheers!
I'm glad I'm not the only one who finds it that way. Because it just heightens depression...and doom.....
Haha! Yes, doom Ia gree. Like anything that is chronic, you hope to be able to manage it without it controlling your life :) However, sometimes there are setbacks you just have to get rolling again.
+HurricaneHetta absolutely! And it would be very easy to allow the pain to control your life! But psychology really affects the level of control Fibro has on ones life..and we have to keep outer lives as normal &a varied as possible if we want the chance to LIVE. That's why I talk about beauty stuff on here too! Having ANY hobby or interest means we should explore them, obsess over them, keep our minds somewhere else and not only on the pain
Amen! Thank You for your input :)
+HurricaneHetta Oh and yes, I'm trying to journal again and also I do think trying to look good and eat right helps one cope. I know I feel worse when I look as bad as I feel lol!
Hi I've had Fibromyalgia & CFS for 41 years. My pain is excruciating. Which antidepressant were you saying helps with pain other than Amitriptyline? Thanks
I have no pain medication except over the counter stuff because I have no insurance and am unable to work. So many of us are in this situation. I pray daily for ALL fibro sufferers.
Great advise! Thanks!
My pleasure! Thank you for the comment :)
Thanks for sharing. I have been struggling with fibromyalgia for years but figuring that out was such a complicated process. As you said, it's a tough diagnosis to come on to anyway, but as a man who was a serious athlete for many years and I have been a contractor for more than ten years... I have arthritis in my spine, hands and shoulders and many other significant injuries. All this compounded things. I also don't have health insurance and have been trying to pay out of pocket throughout the whole process. Not saying all this to complain, just to give a little back story.
My last complication is the one that really has me on a bit of a discovery quest. I'm an addict and battled for years to get free of my problems with prescription pain killers. I absolutely cannot take narcotic pain medication. So now I have a diagnosis that's about six months old and I've been searching for as many options as possible to help me navigate life with fibro from 36 years old until I die without the use of narcotics and it's a bit disheartening to see how little there is right now.
Anyway, I'm done with my little pity party now. If you or any of the people in your comments section have experience or resources that could be of help, it's appreciated. A person could spend a lifetime sifting through all the "I don't knows" of fibro. TIA
Have you tried Cymbalta. It helped my pain but I had reaction of allergies to it. Also supplements collagen, Alfalfa Shaklee, fruit and fiber. Acidophilus, this might help you if you have constipation. We may be retaining fluid in tissues because of it.
This video is awesome. Great info, stated very clearly.
Rebekah Navarro I'm glad it helped you :) Take care and feel free to leave feedback on other videos. Xx😘
I am 55, my pain started in my mid 30's. I was first checked for MS. Then no definitive diagnosis. Went through multiple neurologist and internist till I finally got diagnosed. By then, he said...we can treat symptoms. He is no longer available and I bounce from 1 doctor to the next with each wanting to change meds or start the same tests
etc.
I recently retired from nursing after 32 years. Body finally said ENOUGH. My last year of work, I was hospitalized 6 times. Since I do things at my ability, I have had no hospitalizations in over a year.
please god you'll find another decent doctor that you can stick with🙏
Do you also have chronic fatigue syndrome. I find that I'm able to function through the pain most of the time due to my high pain threshold but the fatigue is so debilitating. Do you suffer from this as well and if you do do you have any advice?
Hi, I'm 19 and I recently found out I had fibromyalgia. Would you say that exercises like aerobics/full body workouts have played a significant role in lessening or taking away your fibromyalgia? I notice it usually happens sometime around the time my period comes. This time I was dealing with it longer than usual (about 3 weeks and has been worse, felt like I was dying constantly), even now with my period beginning. I take pain killers when I need to and do yoga, but it doesn't seem to help much, like it diminishes but is still there. I wake up with body aches and a swelling head most nights to where I feel faint, and as if i have heat rash. it's less difficult in the morning but still bothersome...
Essence Ezell I definitely feel my pain is worse with my period and have for years now. I also am the same in the mornings -not as sore but still sore...
Personally I never found exercise helped me. I find the day after or even two days after I’m far more achy and sore and tight. So I don’t really do high intensity exercise anymore. I feel I have to remind myself to be careful because even though I can DO the exercise there are repercussions and I could be recovering from ‘new’ pain days after a workout!
Hello just cruising through in 2021.. thanks for making this! Very helpful!
What you do when you allergic & sensitive to almost everything.. Very allergic to meds & most vitamins & herbs I have no idea anymore how to help myself I cry for hours now every day had it for over 30 years & never had anyone in family or friend that is informed or gives me comfort after to mean years takes a toll I’m married for 48 years my husband hates to see me sick & is like is all my fault I’m not better.. I see on your face you have a good support I believe Helps more than anything meds or anything in world .. stay strong keep smiling 😘💕✨🦋Thank You for the video
Joanne Pereira First off, I’m so sorry you’re in so much emotional and physical pain and I want to say that I’m sending you love. ❤️ Secondly, I also have pretty terrible allergies (and Fibro) and I’m wondering- do you have a good allergist who has helped you develop any kind of plan for getting your allergies managed? If you don’t have a good allergist, I would try seeing new allergists until you find someone who actually listens to you and is willing to help you create an action plan for managing your allergies. Whether it’s allergy shots, allergy drops (which are a newer treatment), learning how best to avoid foods or medications that hurt your body, changing your environment, changing your lifestyle, or something else, you deserve to have a doctor who will help you explore all your options and help you get at least a little relief.
Also, I’m sorry if no one has said this to you but please know that it’s not your fault that you’re sick! If you are crying for hours everyday, you must also be in so much emotional pain and I’m so sorry. It’s not your fault that your body doesn’t work normally, no one would ever choose to have this terrible illness. I know it can be so hard (physically, emotionally, and financially) but if there’s any way you can make a first step toward getting seeking counseling (like therapy), it might really help you at least reduce your emotional pain.
I’m not a doctor but seeing the right allergist and getting some help managing my emotions around this terrible chronic illness has really helped me so I just wanted to share. ❤️
Thank u very much for this video...it's make me so positive that we have to face the pain all over in our life...lovely tips...- from Nepal....
my pleasure,take care😊xxx
Those where awesome tips . I have had fm for almost 20 years and I like your tip on acceptance. I have always tried to fight it but that makes things worse . I do have a lot of bad days lately but I do what I can
Did you have an MRI w/ contrast dye prior to coming dn with FM?
Front Line Media no actually
@@taecampbe interesting. Are you positive. B/C you will be the 1st one, everyone else had it. Maybe you were too young to remember. I had 2, but at first thought it was just one
Front Line Media this was about twenty years ago . No I did not have a mRi . Getting one here is almost impossible. ( waiting list is super long ) I know I have this condition. They have done other tests thinking it was my thyroid but everything is fine
@@taecampbe what are your symptoms. I can barely walk at times, can barely tolerate laying on my side, and get cramps and leg twitching. Fluid in my whole body, but really bad in my knees
I agree with everything you said 😀 years ago I tried the support groups and yep they are depressing but I made a friend and considering I lost all my other friends years ago I was happy about that. But then I noticed some of my pills were going missing especially oxy & endone so I set up a camera and yep it was my new friend I was sooo upset about it all. Apparently she has been after strong pain meds for awhile but no doctor would give them to her and when I went.to the group I was the only 1 on them so can I suggest don't share what meds you are on with other fibro ppl especially ppl from a support group 😔 Also it took me years to learn about taking meds when I meant to every day not wait for the pain to be worse but I'm in a habit now and it makes my life easier 😀 thanks for sharing 💜
+Jenny T WHAT!!!!!! That is outrageous!! :( :( How sickening. Glad that you have come to realise what works for u with regards to taking meds and all that shabang..some of my tips in this video sound so basic but they are SO damn important!!!
Thanks...I suffer with the pain n enjoyed ur video!!!
Thankyou for your help. I have just finally found out what my pain was after many test's from my Doctor. My mother got fibromyalgia first which was awful to see her suffer. Now l have it l understand. Thank you for your help
Did she get an MRI w/ contrast prior to her getting this condition?
Hi I’m just coming across ur channel I was diagnosed with fibromyalgia 3 years ago after suffering from chronic anxiety and depression 14 years prior when I was diagnosed my doctor told me that my anxiety most probably caused the fibromyalgia at the moment I’m praying that I find a downstairs flat or bungalow of some sorts I live at the moment in an upper flat so it has a flight of stairs outside then another inside into the flat & most of the time I really struggle with the stairs & having a small dog it isn’t good so I pray to God that I find another place soon!! I find myself in pain all the time it doesn’t go away however there’s time like just now where it really gets worse to I feel like I can’t cope with the pain I’m on quite a strong painkillers & obviously medication for anxiety and depression but I feel like I’m not coping with the pain & I don’t think my doctor is really listening to me I’m no where near as active as I used to be & quite embattled to say that iv went from a size uk 12 to size 18-20 & I’m embarrassed with the way I look so far iv not been able to exercise but since listening to u, u have given me a lot to think about & I thank u so much I have a lot a lot of family & friends around me but none of them know the pain that I feel every single day I don’t know what they think & I have 2 sons one has now left home he’s almost 23 & my youngest son is 14 & obviously still with me & it’s weird as a single mum I try to put a face on everything for him but he is the only one who recognises when I’m in pain even tho I get him up & get him organised for the day get the housework done & dinner ect I just find it extremely difficult & I just wish my doctor would listen to me u know? Thank u so much 💗
Hello.
I just wanted to say thank you for this video.
I don't have a formal diagnosis yet, but the specialists that I've seem ask think it likely that i have fibromyalgia.
I too have found the internet very negative. I want to find a way to live with this, a way to cope. I am not going to lie down and let it end my life.
Thank you very much for these tips. I shall rewatch this video until I've memorised it.
Have you found any other, positive, resources on the internet?
Steve Brown hey Steve! Thanks for your comment! if I’m honest I don’t know of resources for Fibro at all.id imagine it’s just trial&error really.if you do find something then please feel free to share it on here. we need all the help we can get! Best of luck with the diagnosis etc. Yvonne 👍🏼
thankyou so much your video has helped me alot🎉😊
I like your videos and agree almost 100% My fibro has been progressive in that I worked for a long time as RN and had excruciating pain that got worse and worse but what finally made me have to quit was the fibro fog. It got worse to the point where I thought I had early Alsheimer's. I was finally dx'd with the fibro. I do also have djd/osteoarthritis. I have never had a "steady" stream of pain meds. Doctors in this area seem to have a real problem with that. I am now seeing pain mgmt. doc and ironically on no pain med. I had to stop .25mg of Lorazepam before they will even consider giving any kind of pain med. Have to wait until med is completely out of my system. I am currently using walker and back brace with otc Salon Pas Lidocaine patches due to uncontrolled pain and can barely function. Some symptoms cme in phases and it seems to get worse every yr. I have had to have surgeries for nerve damage, enlarged lymph nodes removed without ever figuring out why they were, gb out, enkarged liver and spleen, ....it seems to effect everything:(
Thanks for your comment -highly interesting actually.. So first off my fibro was progressive too. It's what made me quit nursing. The fact you have anxiety doesn't look good from the pain point of view and is one of the worst things to have to try to explain. It is known that pain obviously creates anxiety BUT fibro is often diagnosed in patients who have mental health issues (even if they're not very severe). Anxiety and hyper-sensitization go hand in hand and you'll see that in plenty of studies. a higher number of patients suffering with some form of stress, PHYSICAL(your operations) OR MENTAL(anxiety) OR BOTH,present with fibro. that stress, in both forms, are huge risk factors for fibro! (did you know this?). my diagnosis was incredibly stressful in and of itself. i honestly kind of ha d a meltdown with the pain and couldnt sleep and was hypersensitive(not just emotionally, sensory wise in every way). stick with your doctor/consultant if you can. the longer they know you the more likely they will make more judgement calls. i wouldnt be surprised if the first thing they put u on is amytriptyline and pregablin. hang in there honey -i swear it DOES get better.
:) I noticed the sensory issues while I was still working but didn't put any of it together until I had to do my research to figure out what was wrong with me because my previous primary couldn't figure it out. I had complained of the anxiety before I was diagnosed with the fibro by a rheumatologist that my hematologist(the lymph nodes) sent me too. But the s/s were all coming at the same time but kept getting worse and worse but previous primary refused to accept the fibro. He even said that fibro fog sounded made up. It took having to go to ER after having 3 panic attacks in a 36hr span before he put me on the Lorazepam and that was after having to quit job more because of the fog and fear of making a mistake. I was to the point of having to take scalding hot baths for pain relief 2-3xday and up all night with the restless legs from hell and the pain.
Then add the nerve repair from cubital tunnel syndrome and the panic attacks happened. I am on gabapentin and it helps but when the really bad flairs happen it's not enough. My neurologist(thank God for her) put me on pramipexole for the restless legs and Ambien for sleep. Had the black box warning come out about not giving benzos and opoids together is why I have to have the benzo completely out of system before pain mgmt. doc will do anything about the pain. When I first quit work I was able to teach myself crochet but now I seem to really have an energy issue and can't concentrate on anything and I don't know if it's the meds or the fibro or both. You seem to really have it together and coping well. Your videos are really good. And thank you for the encouragement:) God bless!!
Sometimes I seriously wonder if the government is TRYING to get us legitimate chronic pain patients to become IV heroin users?? I can’t help but really see a seriously frightening pattern here. They cut people off the medication that God intended for pain (the poppy plant -which grows naturally EVERYWHERE... gee, I wonder why?) ... taking their own patients whose pain has now been managed and whose lives are full and happy again, and they cut them off, force them back into a life of pain and now thanks to them withdrawal, and most likely an “opiate addict piece of trash” stamp on their foreheads. If something works for pain, why do they stop prescribing it to you? Maybe so then you’ll be forced to join an opiate maintenance program using methadone or suboxone, which the government makes a TON OF MONEY off of. And those are the “fancy” people in pain. The less fancy, are left with no choice but to do something they swore they would never in a million years do. Put a needle in their arm to satiate their nagging pain, constantly clawing at you to where you can’t focus on ANYTHING else. Pain and essentially HELL is all you can see. It’s all there is. And I’m left confused because I would just simply like to know why? WHY? Why are we not deserving let alone ENTITLED to a bountiful resource of good medicines that truly treat peoples pain? Opiates are not the devil. The government and big pharma is. Sorry for my tangent, I’m just so angry when I hear about doctors all of a sudden not giving pain killers if a patient is on such a freakin low dose benzodiazepine. Give me a freakin BREAK! I’ve been prescribed a healthy amount of each at the same time for yeeears, and believe it or not, I was HAPPY AND PAIN FREE! It was the longest span of time I ever went without trying to take my own life (seven years!)... before they started “cracking down” and inventing the “opioid epidemic” so they could conveniently offer a cure for, one that’ll cost ya a pretty penny all whilst not controlling your pain or depression and anxiety. Ughhhh..... ok, rant over. But seriously, does anyone know when this shit is going to blow over? Can’t we go back to the 1950s when doctors were doctors and not Governmental Priests condemning us for a disease that fuckin chose US, homie. (That’s a wrap)
This was very helpful. Thank you
Yet again, you do a brilliant job of bringing a measure of clarity to a complex and vexing problem.
Your videos show a lot of organization and planning, but the delivery style is still spontaneous and natural (not laboriously clinical or burdensomely academic).
As an aside, I would think that fm sufferers must draw inspiration from your focused and articulate and constructive energy. In addition to the content of what you say, you show by example how fm can be successfully dealt with.
You are so helpful and calming to someone like me who hasn't had the diagnose for that long. I am still waiting to go back to the doctor to discuss treatment, but these tips ring true to me I think. I have been thinking about trying anti-depressants but I guess I am just a little scared. My body is super sensitive to a lot of things, like sugar, caffeine, alcohol and so on. I've had such a negative experience with other medications I am always scared to try new ones. But you are so right when you say that preventing pain before it happens is the good way to go. Thank you for this video! I felt like you said what I needed to hear.
Ahh, now I see! Apologies for the whole soda thing on your channel...never realised u were so highly sensitive to things!! Things will get a whole lot better for u on this 'journey'. And always feel free to get in touch :) Yvonne
Joffelicious I was like you sensitive to some meds & slowly a lot things and now I’m allergic & sensitive to everything cannot take any pain meds food too & allergic to scents & perfume & have MCS.. Find a good doctor I heard of Doctor Peter Vadas in Toronto help a lot people he is the best I Wish I didn’t had to cancel my appointment I had with him is fare from me I’m to sick right know & I’m getting old , I’m sorry I say that to you because every time someone says has My symptoms before , know years later I don’t even leave my room anymore Please get help before gets worse & worse listen from someone those int know how to even write the words to make sense . I just worry when I see myself in some people who started by having fibromyalgia & keeps progressing to so much more Take care hope you get much better soon xo 💜✨🦋
🙏
Thank you! ♥
What do you say about getting out of bed and having no energy to do anything cuz u can't shake the pain .. weather has had so much to do with any progress, & hindering since I live in thee coldestplace all yr round ,, 😠
I’ve had fibromyalgia for 4 years, and i still struggle with accepting it. I’ve had swelling in my neck and after X-rays the doctor told me it’s part of my fibromyalgia, have you ever heard this from anyone? I’ve also got bad fibro fog. I love your vlogs I’ve nearly watched all of them xx
Yes I have bad fibro fog neck shoulder pain
I've had it 1 year, & far from accepting it, I'm really trying. I have neck/shoulder pain too. And the fibro fog just seems to keep getting worse for now...
well said I've had fibro for17years it's something you have to learn to live with and cope with positively
Rona Laing I've had it about 11 years...I fully agree. We can either try our hardest to live and breath and think positively or throw in the towel. It's easier to throw in the towel. The desire is there, often, but throwing in the towel is throwing away a half-life. A half-life is better than none at all. (Positive right?😜)
Yes i agree ,we matter to ourselves and our family .We are brave👍My favourite quote is After all tomorrow is another day.Cheers all the best
Rona Laing 😉 and you rona
@@YvesyM I like your positivity, I have days with positive and negative thoughts. It depends how I feel. I don't what to do to feel better.
Thank you. The medicine, Cymbalta is working. Along with gabapentin and some others. 2 months ago, I could barely walk 5 mins. Now, over 30 mins. a day. I try to walk almost every day and it is brilliant. I am very happy Today, not saying it is all perfect. Question: Why such late diagnosis? Took years 🤷♀️😬
this is the case for many people. resources are a big thing really. GPS would have to rule out many conditions before leaning towards fibromyalgia. that means expensive blood tests, onward referrals etc and its a lot of WORK. they need time to really understand everything about whats going on for you. who diagnosed you in the end? im delighted youre doing a lot better -same with me thank god. 30 mins walking is solid :) Good job
Hi I'm new to your channel and making my way through. I wanted to ask How Are You? what's life like atm, are you in a good place? I hope so, I really do!!
I'm 8 years in with CFS and a couple with possible Fibro. Horrible medicines, anti deps. tramadol,oramorph. As you know the pain doesn't go away it just takes the edge off. I. can't get out haven't since before diagnosis with PVFS, when it should have CFS back then I think, but never mind. It was a big deal back then not so much now, because there just is no doubt.
Anyway it's the isolation and confinement that is driving me crazy right now. Although to be truthful there's not a soul I want to see or anywhere I want to go!!
CZcams is a life line to me, thank goodness for it because I think I would be far worse without it. I'd love for you to be able to post regular because your knowledge base and experience is invaluable.
Your so easy to watch too. Thanks for what you've put out here for people and the effort it's taken to do it. We all need it more than ever as we go down this painful road.
Thanks for tips and encouragement, I'm having a pity party today I think, sorry this comment isn't more up beat.
Sending love your way though! xxx
Hey there! I never got your name? (I'm Yvonne). First off I wnat to reassure you 1000% that your life sounds quite like mine right now, though I'm guessing yours is probably worse. Amazing to hear all your positive feedback and for you to ask ME how I am -thank you. So much.The past few days have been absolutely HORRID. Up to full capacity pain-treshold wise and tipped over. It is the only thing getting the better of me at the moment. The ISOLATION you describe is what I described to my boyfriend (who I live with) only 2 days ago and again today speaking to my Mum. It's like the pain affects EVERYTHING in the present tense, pain-tinted glasses so to speak. And over the past 3 days my spirit has been quenched, I cant deny that. I am a fair bit better today and actually just made a video on Fibromyalgia & Sex. Having said that I am better today than the past 3 days in the way that I walked to the shop without needing to sit down or feeling straned and wondering how hell I could make it back home. I work through the pain the WHOLE time, always pushing boundaries which is the only way I can live a semi-normal life. Was called for an interview to an AMAZING job,like exactly what I would love to do, yesterday and how crushing it was to know that I can't commute or work a fulltime job which is what this job requires. And I couldnt help but get excited either and so disappointed at the same time. I feel I'm living on the cusp of normality and so desperately want to STAY in normality but the pain just pushes and pushes and pushes you back. It's exhausting.Some days you need those pity partys because I swear to God, the shit we deal with is incredible. I honestly think we are amazing human beings to endure what we endure and not give up completely.Thank you SO much for commenting and for sharng more about yourself too. The fact you appreciate these videos is what keeps me wanting to speak out and fight for us collectively.
YvesyM
I'm so glad I choose that day to comment, you needed a decompress! I'm Tracy -pleased to me ya! 😀 Lol. You have had it tough the last week but I'm hoping you have broke the back of it, so to speak by being able to do the shops!?! I've got my fingers crossed for ya! Have things settled back into a better pace for you?
The days the pain pushes us to the very edge scare the hell out of me even after all this time. I just think, the pills I take are pretty strong and what's left when they don't work? I can easily take the full 8 tramadol in a day. I get away with 6 if I have a couple of doses of oramorph, hell when I write it down like that it sounds terrible. Funny, I started to feel ashamed of myself as I wrote that about the medication. I didn't realise until now I see myself as a failure and I suppose that I need to take all those pills is kind of the proof. OMG, proof if we needed it how much this condition screws with your brain!
I know how hard it must have been to get so close to that job you could touch it and know it was too much. Shit, it's soooo crappy our heads and hearts still want everything they did before we were struck with this. Our bodies just can't haven't got the strength or the stamina! If all we needed was determination and the energy we use to push ourselves every day, we would could do anything, hands down. It's difficult to know what we can do though, because every day is potentially so different. I haven't got any predictably when it comes to pain, fatigue etc. Other than I know it's gonna be there, lol. But it's the degree it's present that's the point. Your right we are amazing people because who else could do it day after day after day feeling as bad as we do!?!! My son said I'm a hero! I did smile..... he's right though. We are, you, me and all you're subscribers.
Just this week I was standing at the sink washing up, trying not to put to much weight on one leg for too long. Bending forwards every now and then to try and move the pain in the bottom of my back and left hip and then back the other way!! I must have looked like a mother hen.....peck, peck! 😀
Well I was thinking as I do often, I better get to bed soon so I can be up in the morning, have I done to much today? oh I hope I don't wake up tonight, did I have my pills yet? It went something like that. Then out of no where a more pissed off disgruntled me piped up and said, You're not gonna be up in the morning because of course you'll be up all night! You're not gonna be better in the morning or the morning after that or the one after that. You're never going to get completely better. Wow! On the one hand it was a bit heavy and negative but on the other it was the bloody truth; like it was along time coming to get me to the point; soI could actually look at it and accept the situation as it's been for nearly a decade!!
That doesn't mean I won't push myself to do the tiny amount I'm capable of every day and probably a bit more besides! But it does mean I can stop worrying about all the things I won't to or can't do. It's taken me so long to get to this place of acceptance. I think it's because we can only deal with so much at one time. I believe we have a safety filter somewhere in our amazing brain's and it filters things down when we have the space and resilience to cope with it. I'm grateful for this little gem of self awareness. I know it sounds crazy it shouldn't have taken all this time to see what must have been in front of me all the time! But I've spent all these years normalising it all. Living with it, doing what I could, pacing, sleep hygiene, physiotherapy, CBT, pretending and hiding in from others and it seems myself. Wow, I've been busy no wonder I'm knackered! 😁
I feel like I don't need to do any of that anymore, I haven't given up though. I've given myself permission to be iIl, fatigued, in pain, eternally constipated, depressed with it all, anxious, over weight and everything else that goes with it. Cause it's gonna be there anyway! I'm not judging myself anymore or putting crazy pressure on myself constantly to do more than is possible. I don't need to try and be someone I'm not anymore.
I don't suppose it's going to stop me wishing with all my heart it was different and that I could just be 'normal'. But I hope there will be some peace and self acceptance, that I can believe it ok to be me. I haven't failed at life in fact I've been more than equal to life. I'm weathering those personal and physical storms and still around to write about it at 2.47am!
I'm to tired to spell check now or decide if I've shared to much. I'm just going to post it and hope you can see yourself in my struggle somewhere so you can know you're Ok just the way you are right this minute. We don't need to change a thing, believe it or not because a lot of it we can't anyway, we just need to make ourselves as comfortable and happy as possible! Do what makes us happy! That way a measure of health and growth are bound to follow!
sending love your way Yvonne and big ☺☺☺☺ xxx
As a sufferer of fibromyalgia for over 23 years and a mental health expert I find your tips some of the best I’ve come across. Thank you for sharing.
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Hey fellow fibro warrior :) just subscribed. Loved the video. xoxo Liddy
hey liddy! thanks for stopping by :)
I didn't understand the part of letting my pain be, how can I do that? I don't understand, it get's me too frustrated. Please, someone explain it to me :(
Alaide Hurtado try to accept it.you can’t do anything about it.you can’t suddenly get rid of it.so even though you hate it you have to just let it be there,you know? xx
Thank you for this video. Subscribing now for more! Love from Argentina
Periods with fibromyalgia are horrible pain just horrible hurts like hell 🙏🏻❤️🙏🏻
just saw your video. great info. I have fibro gluten free & organic foods DO NOT help me. ive learned to live with the pain. the cold weather really bothers me. but I still plug along. thx for the info.
barb hambly my pleasure! it’s only my two cents worth but hearing other people’s thoughts can be helpful sometimes
Do you that severe trauma can bring on fibromyalgia. I have been several tortured and abused. I hurt so much I feel like I have the flu in my whole body
i had muscle pain that started around the age of 14/15 in a particular part of my back. the pain carried on as i got older.however the pain did heighten as i was experiencing a trauma but also putting my body under stress (nurse-training). so its hard to say. it has been documented that severe trauma -physical (eg.major surgery)or emotional- can induce fibromyalgia.it makes sense because of hyper-excitability of the nervous system.really hope you find help and get support. DONT giv eup. after a life with such trauma you deserve nothing but peace xx
@@YvesyM I have fibro flu also. When I was growing up I experienced every kind of trauma, legit... every kind. I hurt every day. Hang in there.
I was born with abdominal migraines, and it progressed further when I got older. I’ve been living with chronic pain, and it was misdiagnosed as fibro. My sister does have fibro, and what really works for both conditions is a drug called low dose naltrexone. LDN for short, is a miracle drug for chronic pain. It has even saved people who were sent home to die of cancer, and they’ve lived. It helps MS, and a wide range of problems. Pain medicine is not the answer. It can mess up your liver and kidneys and stomach in no time. And the crash after makes your feel even worse. Also, for your nausea, which I have a lot of, I use medical marijuana. It helps with pain and loss of appetite, which is what I have noticed happens with both fibro and migraine disease. I hope this helps. I liked what you had to say, and they almost tried to trap me with the perquisites, but there is other ways to manage your pain without that horrible pain medicine. You are right about their not being a cure, and you have to find the right doctors. Keep sharing.
It does most definitely worsen over the years! Every winter is worse. I used to be able to work with it until the syncope part of it started and the pain worsened.
Some say leaky gut is the cause, and recently heard of bovine colostrum for that. I don't buy it as a cure but maybe it getting better.
I get you -i guess we will only know more in years to come about the strong links and hopefully the causes of it too.all that stuff takes time and years of speculation,studies etc.thats what makes it so frustrating 😑
@@YvesyM Agreed, very frustrating. I just hope they keep trying.
Yes I've had fibro for 30 years now and it has worsened I was able to pace through the first 27 yrs but now I'm in my 60,s the pain and ability to move especially in the morning is unbearable... so maybe just worse with age God help us all and maybe soon a better understanding of this horrible ilness
A good friend of mine is a chiropractor and he swears that chiropractic can cure fibromyalgia. His attitude is infuriating. He says if I would just see a chiropractor my fibro would be cured. I have stopped talking to him.
Robert Cairns UGH,F*CK OFF😠😠😠
Thank you for making a video about this disease & helping others to help understand it. Was wondering how come your not doing IV infusion treatments ? This was recommended for me by my pain management doctor & I will be seeing a specialist for these treatments to help me.
Dina Zuniga :) what country are you in? it's probably not available here. And to be honest I don't think I would need IV treatment
YvesyM I live in Kingsville Texas. The iv infusions treatments are to help with inflammation & chronic pain. To not need them is being very lucky you have your fibromyalgia under control to your living standard. Thank you for your reply 👍....
Dina Zuniga I wish I had the pain under control.its a horrible condition.
YvesyM I'm sorry I thought you did. I wish they had IV infusion treatment in your country for you to at least be able to consider.
thank u darling xx
my mind seems like it dosent want to work ,do u know if that's part of fibromyalgia
Blue Sky yes, that's definitely related to fibro.check out a thing called 'fibro fog'.sending all the very best wishes&positive energy to u.yvonne
ty I have been having a brain that dosent want to work,can't remember words ,I have been having spasms all over my body and whole bunch of things happening at the same time ,I and I have nerve damage in my arm ,and I have where my body twitches and I have had tremor s.in my hands since I was a kid ,I am going to the doctor s today ,my body is so weak from all this
Blue Sky I really hope it will be your first step on the road to managing your journey a lot more effectively x
Hey. Just stumbled on your channel.
Thank you
Thankyou 💜🌹
What if you started with myofascial pain syndrome and then it becomes fibromyalagia..
Yep, that's possible
Sorry I forgot to mention are you able to have a routine? Xx
YES. For sure you can have a routine with fibro, even if you have to go slower and your energy is a lot lower. you mentioned the fibro fog too....because of the list of symptoms that come along with fibro sometimes you'll find youre a lot worse than others. i find the symptoms vary from day to day, week to week. I might be a lot better some weeks than others and things change all the time. the pain varies, sometimes my back and neck are killing me and other times its my arms and legs that are the worst...it can be really hard to deal with all the changes and varying symptoms...
accepting it is the first stage to truly getting your life back on track. for anybody an illness brings grief and anger and emotional challenges. if youre still trying to accept it maybe speaking to a therapist could help you get your head around it more..... xxxxx
@@YvesyM yes I have a lot of different symptoms like others. Don’t think brain fog helps with anything, my forgetfulness and my speech not good.also I get the shakes, don’t know if you suffer from that? Thankyou so much for your reply it’s really helped xxxxxx
I realize this is a older video, but this is well said. There’s no cure. I been diagnosed twice now thinking that I had RA. My joints were so inflamed and high crp protein. Inflammation. Saw the rummy and said it’s fibromyalgia. Again. I been in so much pain in morning and night where I need a walker to get to bed. Then with IC or over active bladder it’s hard to get decent amount of sleep. Sleep is the only way to get any relief. But you need a balance of sleep and waking. I find it I stay up until three am with out having some fresh air I am going to hurt more.. keep a schedule is key and making any large tasks in small chunks like laundry and dishes. And keeping up with cleaning. If you are in a constant state of disorganization like I’m am I am a chronic adhd disorganized mess. If I can keep things simple I do better. I hired some one to vacuum for me and it’s a huge help. Yeas it’s a cost but it helps me enormously just to have some help. Just some one who knows you and you can trust. She doesn’t do everything just the floors and that small thing makes me happy. Also staying as positive as much and take the drama out. .I also say no to a lot of things. Sorry this is long but I just love your point blank views and not trying to sell us every thing under the ☀️ sun. Hope you are well and stay safe.
I do agree about physically going to support groups. I went to the one in my city. It was completely awful. Just a total bitchfest. Nothing positive and so depressing. The leader of the group of 5-6 people was the worst with the negativity. They were actually talking about why they couldn't keep any new members. Of how people only came once. They never thought it could be them of course it was the people who came who had the problem. I was the new person. They didn't ask my name didn't tell me theirs and didn't include me in any of the conversations. Luckily my friend was in the same building and came and knocked on the door to check on me. That was my chance. I excused myself and got out of there before the meeting was over. Of course, I never went back. I do follow a provincial Fibromyalgia online group. There I can read about others problems which I have the same but we also try to come up with positive solutions. I can participate when and where I want to. I find it really helpful.
Alexandra Kennedy for some reason my oddly comforted that you are open to positivity and finding new ways of coping,improving etc. Because I get so discouraged by seeing what people with Fibro post.its doom and gloom and makes me feel even more scared/hopeless. I have nobody who has Fibro on my Facebook. Not because I’m not interested to hear their experiences but to protect myself from the negativity!!!🙈
Thanks. I was surprised to finally hear someone say that. I thought it was just me. When I had times where I was feeling better or more energy I tried being part of other groups. Groups not related to FM and I then found a lot of fighting of power within the groups themselves. So I just found volunteering doing Pet Therapy with elderly in a Senior's Home turned out to be the best and most rewarding for me.
thank you ! this video shaked my gloomy mood..cheers
I love u and that accent!
Aw you're so sweet☺️
I went to the doctor s ,I forgot to that I have a lesson on my brain but the doctor did tell me fibromyalgia can cause spasms so he,put me on muscle relaxers for one week to see if it helps,and he s going to soon give Me an MRI to see if the lesion on my brain got worse cause he said damage to your brain can cause your body to hurt and not want to do thongs
The only real relief I ever got from the all over pain was swimming a lit. Then going into a hot tub! Then rinsing down with cool not cold water then for about 5 hrs. Such relief!!!! Now the problem most of us don't have a pool or a hot tub! I only had access to this treatment temporarily.. if at al possible try this.... I dont have that opportunity any more tried every thing in the past 30 years and found nothing else that helps it is constant and still overwhelming to me
Wow....very interesting about the pool etc. Thanks for sharing this. It's horrible knowing how much it has affected your life. You're not alone. Message any time! Xxx
@@YvesyM yes it sure did help the pain! For a lit. Time.there was No help with fatigue! At all! But when Pain & Fatigue are your constant a lit relief from either is a great blessing! Thank U sweetie
what medication do you take?
cmerryfield32 czcams.com/video/va3WrH1AtFc/video.html check out this video x
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There are a few things I disagree with you about but the one thing I disagree with you the most is to not seek a cure.
I was diagnosed with chronic fatigue syndrome in 1987 and fibromyalgia in 1994. I went on disability in 1994 at age 27. For many years I took every med the docs suggested might help. They only gave hortible side effects, no help.
In 2000 I started looking online, researching. It wasn't until 2006 that I found out adrenal fatigue is the true illness! Yet medical doctors wont admit AF is real. After taking supplements for AF and doing AF diet I had a 6 month remission!! I felt better than I ever did in my life. The physical things I was able to to felt wonderful. I helped when we moved. Lugging heavy box after box up and down steps for hours. I went working out 3 times a week at jazzercise. It consisted of cardio and light weights.
I slowly stopped doing the diet around 6 months and started feeling it very quickly.
It is 10 years now and with the supplements I take for adrenal fatigue I am able to manage my fatigue and pain. But bc I haven't been able to stay away from high sugary foods and bad carbs, I haven't reached my remission status I did before.
Bc of AF we get systemic candida. When u have AF it makes u crave sugar and/or salty foods. Candida as well makes u crave sugary foods. Plus before ever getting sick, when I was healthy I was addicted to sugar. So when I stick to the diet I go into remission. With the help of the supplements that help with AF. If it wasn't for these supplements I doubt I would be here today. I would never be able to get out of bed and my pain would be absolutely intolerable.
If u have fibro and or cfs you should check out the symptoms for adrenal fatigue. I thank God I looked for causes of my fibro and found out about AF.
You are wrong when you say it doesn't get worse over time. After years of inflamation and stress on the body it just gets worse and worse. I've gotten worse and worse as the years have passed. Being ill for almost 30 years that is something I know for sure.
You are also wrong if you think there will be help from the medical community in time. They are no closer now than they were in 1987. They haven't a clue. I don't believe a lot of research is being done for fibro at all.
Complaining to my doctor about my pain doesn't do anything. With the pain med laws becoming so strict he wont prescribe me with better pain meds. No doc in Texas will.
For the time I know there is pain I will have. But I recently found another supplement that helps with the pain. So if I just resigned myself to feeling pain all the time, I would be in a lot more pain by not finding this help. And I wouldn't be here. Nobody could handle the amount of pain I was in.
Hope this helps others to find if AF is their true name for their illness. I know exactly what caused my AF and all the pieces of the puzzle are fitting together.
Susan
SusanBrooklyn There's no such thing as Adrenal Fatigue.
So where did u go to medical school that u know af is not real?
You must be smarter than others in the medical field, people like dr oz and others who know it is real.
Did you know the medical field used to believe diabetes, pms, cfs and other illnesses were not real.
Thank God I wasn't close minded like u or else I would still be stuck feeling horrible like before i worked on healing my adrenals.
You just think people should give up, accept pain, take antidepressants and never expect to feel well again. Horrible!
Funny how you never mentioned alternatives to antidepressants. Like 5htp. It's natural and effective. It did wonders for my mood as well as in other ways. And it didn't make me feel like a zombie the way antidepressants do. None of those side effects!
Also, not all support groups are like that. But you didn't mention that possibility, only YOUR experience. I've made some really good friends at some. We helped each other tremendously.
People I would be wary of taking advice from this chic. She thinks she knows better than everyone else, even doctors.
YvesM, when u've had this illness 30 years like I've had, and did the reasearch like I've done with doctors as well as on the internet. Well then maybe you might know a thing or two. But right now, you know zilch. But even worse you are spewting hopelessness when there is hope in recovering. I know it.
Susan , you are CORRECT! To say there is "no such thing as adrenal fatigue" only shows ignorance of the human body and physiology. Once you learn how the mind, body, spirit is all intertwined, you can find true healing! Do I have degrees and experience - an immense amount (because that's the next question coming) - but that doesn't matter to me. TRUTH matters.And it pains me for people to tell others to stop seeking the cure. How disheartening. However, there are those few souls who transcend what medical doctors put out and seek reality. Koodos to you, Susan for searching it out and breaking down the strongholds of mainstream, conventional medicine!
Thank you, Rebecca. I couldn't believe the nerve of this chick YvesyM. It is one thing to be ignorant, quite another to actually tell someone that. All the doctors and info online about af must be wrong and she is right.
Does she realize how many people were told there was no such thing as fibro b4 it became a diagnosis?!
She has no business telling people to stop looking for answers. To go on antidepressants. And she is highly delusional if she thinks there are great strides regarding this disease. They know nothing more about this illness today that they knew over 20 years ago. And they don't care to know either.
I notice she remains quiet. I guess when I asked what medical school she went to, it shut her up. And she can't admit she doesn't know everything and shouldn't be so dismissive when it comes to a person's health issues.
Bless you.
I’ve pushed this into remission for 2 years. It’s beatable but it has to be a complete lifestyle overhaul.
that's so interesting! i wonder what aspects of your lifestyle you changed to have such a profound change...
If this illness goes away in first few years its questionable to if really had Me/CFS it's not curable but has to be loved with and thanks for this video we need all the info we can get to deal with it
@@YvesyM I wasn’t getting help from my physicians, and I was in so much pain I could barely breathe/eat/ or get out of bed. I slowly started into yoga, and keep going despite the pain I was in. Over time, between the lack of eating and retraining my body through yoga, the pain slowly abated until it had mostly subsided. It was incredibly difficult, but if you can over sensitize the nervous system, you can desensitize it. I had to push myself through, but it is possible.
@@Mfield111 you’ll notice I say pushed it into remission. It was diagnosed by an internist, so I’m quite confident he knew what he was talking about. There are lots of people with this that experience periods of remission. It’s quite common.
That great you were able to push through this illness 30 yrs.. all my pushing I was capable of doing only pushed me into more fatigue and pain...please tell what you did??? So we can all be cured from it thanks
Cbd oil thc free. Helps a lot!
Have you try doctor Akhigbe herbal medication
Contact Doctor Akhigbe for your cure with his herbal medication
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How do people have a disease that has no objective diagnosis ?
right? i wonder in years to come if it will have another name..at least so much research is being done the whole time and there is concrete MRI evidence to show the CNS processing abnormalities..that's something. but its a frustrating condition to have. sometimes i find myself wishing it was something else that was more actionable...
@@YvesyM there are people out there who are in the works of creating imaging, that is almost 99% accurate.
Sandip Biswal, Sidartha Sikdar, Lynn Gerber, Jay Shah and a team of researchers at the NIH in Bethesda Maryland are working on it.
Here is basically what I believe to be the future in doing a full body positron emission tomography MRI scan to do a full body imaging.
Alot of these people who fake their pain to get attention and victim points are going to be in for a real surprise when there can finally be imaging and biomarkers to put their nonsense to rest.
www.ncbi.nlm.nih.gov/pmc/articles/PMC10629993/
Up-and-coming Radiotracers for Imaging Pain Generators
Rianne A. van der Heijden, MD, PhD1 and Sandip Biswal, MD2
Chronic musculoskeletal pain is among the most highly prevalent diseases worldwide. Managing patients with chronic pain remains very challenging because current imaging techniques focus on morphological causes of pain that can be inaccurate and misleading. Moving away from anatomical constructs of disease, molecular imaging has emerged as a method to identify diseases according to their molecular, physiologic, or cellular signatures that can be applied to the variety of biomolecular changes that occur in nociception and pain processing and therefore have tremendous potential for precisely pinpointing the source of a patient's pain. Several molecular imaging approaches to image the painful process are now available, including imaging of voltage-gated sodium channels, calcium channels, hypermetabolic processes, the substance P receptor, the sigma-1 receptor, and imaging of macrophage trafficking. This article provides an overview of promising molecular imaging approaches for the imaging of musculoskeletal pain with a focus on preclinical methods
Also doctors are more worried about their bottom line. Very important to make sure you get the care you need. The last thing anyone needs to deal with is doctors that are assholes who don't listen to you about your issues.
Sadly there is no direction for men, who have similar symptoms, or studies on how it affects men's mental health. we are 3% of the population but have an additional issue of weakness. This isn't as noticeable to women because women will have weakness with the eb and flow of their hormones (as estrogen actually causes this) men dealing with weakness and constant pain are suffering the worst because we don't have the built in pain resistance that women have due to their ability to give birth. Additionally, men become extremely frustrated and angry because weakness is not something we're used to dealing with, pain is something we are used to dealing with however, not at these levels.
the1tigglet I think direction and management for men applies exactly a sit does for women. if we were to go in to nature, then men were naturally stronger and more resilient to aid their hunting. pain resistance varies dramatically between all of us
Yeah but our government's opiod restrictions are gloomy and bleek in US. Also yes no cure but master control happens. Possible cure minimum invasive technique surgery for Tarlov cyst on the sacrum is the most recent and promising on the horizon. Notifications on.
Hot water bottle its really hot and hides the pain. for me.
Thank you