((gentle hugs)). Thank you for sharing your story. I also have fibro (in my 20's) and was diagnosed with rheumatoid arthritis last year at 38. Like u mentioned, about resting when you need to. That took me the longest to learn, I tried to keep going and going then I'd end up in bed with a flare up for days. Now i have learned to listen to my body and rest when needed.
Thank for the information about spoon theory. I have just been diagnosed with fibro after years of chronic pain, and this makes so much sense to me, and gives me so much hope.
You are describing how I feel everyday. I work in juvenile justice advocating organizaers and work with parents advocating and building leadership of parents. I feel all this you are describing. My coworkers think I'm lyinging because to them I look fine and I do not look sick. My pain is never ending. When I do outreach and set up meetings to facilitate or prep for rallies. I feel like shit everyday. My doctors don't believe me at times I can't work my job. It is debilitating can't stand alot can't do my laundry or housework. All I eat now is a spinach salad boneless skinless chicken thigh and avocados dressing chive and lemon dressing. The more work building I start to get chest pains difficult to breathe. I'm in debilitating pain daily. Thank you for your story.
Thank you for sharing your story too, and for all the important community work you do. It's so true that more education is needed for society to understand and validate "invisible" illness and pain.
Hello...I came across your video and wanted to watch as I also have been diagnosed with fibromyalgia and RA and have been dealing with it for 7 years. I just want to share a small change I've made for the last 6 to 8 months that has helped in managing the pain. My primary Dr. monitors my Vit D level and take supplements vit D with K3 that have increase my level and have been taking Magnesium citrate with calcium and zinc. I've notice that my flares have been less although I still take tramadol to manage my pain but have reduced the amount I need to take. Of course the rest is very important. I am retired so that allows me to rest and take things easy. I had noticed my IBS was very much linked with my flares and my gastro had me tested for SIBO and it came back positive so he treated it and it has helped also. Your "spoon" story makes a lot of sense and I'm glad you shared it. I also noticed a flare will come after the jaw pain. Wishing you well and hopefully one day the medical community will be able to help us more.
Thanks so much for sharing, Nydia. Those are good tips re vitamin D etc. I do take magnesium and also CoQ10. Such an important reminder that a lot of these symptoms are linked in so many ways. Glad to hear you've found some things to help and I hope you can find some long-term release as well.
Hi thanks for sharing your story. I have been struggling with TMJ and fibromyalgia for 2yrs now. I can related you. How is your TMJ treatment any better? Hope we can find some release.
Hi! I am having so many similar symptoms and have had no luck with several doctors 😢 as soon as a blood test comes back normal they stop looking. Meanwhile, I am still on daily pain. I hope you’re doing well! Thank you for your video it was really helpful and empowering.
I'm so sorry to hear that you and the other commenters below haven't been able to get the support you need, such a huge issue with fibro and other similar conditions that are hard to "diagnose." I hope you're all able to find some relief from your pain soon. x
pretty sure I have this as well . I spent about 10k total going to doctors for a few yrs now to no solution. I have now given up on medical help and have been trying things on my own. massage gun really helps alot I normally use it after a busy day and it helps alot. I have changed diets quite a few times and vitamins some help more then others I think but little difference for the most part. I just started wim hof breathing that seem to be helpful in the morning would say that's a free easy thing to try. looking into cold plunge next but that's expensive so I'll work my way there.
Thanks for the wim hof breathing rec, will look into that! Instead of a full cold plunge I've been doing a few seconds of cold water at the end of my morning showers, which feels quite refreshing. Hope you're able to find more things that help manage everything for you.
The Spoon Theory sort of make sense. Thank you for sharing your story.
((gentle hugs)). Thank you for sharing your story. I also have fibro (in my 20's) and was diagnosed with rheumatoid arthritis last year at 38. Like u mentioned, about resting when you need to. That took me the longest to learn, I tried to keep going and going then I'd end up in bed with a flare up for days. Now i have learned to listen to my body and rest when needed.
Yes me too
I will be praying for your healing!! Thanks for sharing 😘
Thank for the information about spoon theory. I have just been diagnosed with fibro after years of chronic pain, and this makes so much sense to me, and gives me so much hope.
Aw, I'm so glad that it resonated with you. Wishing you a lot of care on your fibro journey!
You are describing how I feel everyday. I work in juvenile justice advocating organizaers and work with parents advocating and building leadership of parents. I feel all this you are describing. My coworkers think I'm lyinging because to them I look fine and I do not look sick. My pain is never ending. When I do outreach and set up meetings to facilitate or prep for rallies. I feel like shit everyday. My doctors don't believe me at times I can't work my job. It is debilitating can't stand alot can't do my laundry or housework. All I eat now is a spinach salad boneless skinless chicken thigh and avocados dressing chive and lemon dressing. The more work building I start to get chest pains difficult to breathe. I'm in debilitating pain daily. Thank you for your story.
Thank you for sharing your story too, and for all the important community work you do. It's so true that more education is needed for society to understand and validate "invisible" illness and pain.
Hello...I came across your video and wanted to watch as I also have been diagnosed with fibromyalgia and RA and have been dealing with it for 7 years. I just want to share a small change I've made for the last 6 to 8 months that has helped in managing the pain. My primary Dr. monitors my Vit D level and take supplements vit D with K3 that have increase my level and have been taking Magnesium citrate with calcium and zinc. I've notice that my flares have been less although I still take tramadol to manage my pain but have reduced the amount I need to take. Of course the rest is very important. I am retired so that allows me to rest and take things easy. I had noticed my IBS was very much linked with my flares and my gastro had me tested for SIBO and it came back positive so he treated it and it has helped also. Your "spoon" story makes a lot of sense and I'm glad you shared it. I also noticed a flare will come after the jaw pain. Wishing you well and hopefully one day the medical community will be able to help us more.
Thanks so much for sharing, Nydia. Those are good tips re vitamin D etc. I do take magnesium and also CoQ10. Such an important reminder that a lot of these symptoms are linked in so many ways. Glad to hear you've found some things to help and I hope you can find some long-term release as well.
Hi thanks for sharing your story. I have been struggling with TMJ and fibromyalgia for 2yrs now. I can related you. How is your TMJ treatment any better? Hope we can find some release.
I'm sorry to hear you're going through something similar. Mine comes and goes in waves, I hope you can find some release soon as well. x
Thank you for sharing this! Would you be willing to share the name of your rheumatologist? The one that I saw was not great.
Hi! I am having so many similar symptoms and have had no luck with several doctors 😢 as soon as a blood test comes back normal they stop looking. Meanwhile, I am still on daily pain. I hope you’re doing well! Thank you for your video it was really helpful and empowering.
Feel the same wayyy
oof same here! my doctor even said it could be fibro but wouldn't help me get a diagnosis. i'm so tired of being in pain
I'm so sorry to hear that you and the other commenters below haven't been able to get the support you need, such a huge issue with fibro and other similar conditions that are hard to "diagnose." I hope you're all able to find some relief from your pain soon. x
❤
pretty sure I have this as well . I spent about 10k total going to doctors for a few yrs now to no solution. I have now given up on medical help and have been trying things on my own. massage gun really helps alot I normally use it after a busy day and it helps alot. I have changed diets quite a few times and vitamins some help more then others I think but little difference for the most part. I just started wim hof breathing that seem to be helpful in the morning would say that's a free easy thing to try. looking into cold plunge next but that's expensive so I'll work my way there.
Thanks for the wim hof breathing rec, will look into that! Instead of a full cold plunge I've been doing a few seconds of cold water at the end of my morning showers, which feels quite refreshing. Hope you're able to find more things that help manage everything for you.
do you get headaches and if so how do they feel
Thankfully I don't get headaches, though I know it's a common symptom for many people.