Sounds very similar to my journey. Found out about my hypermobility last year. Recently learned about the MTHFR gene mutation connection to it all as well which has been helpful for me and especially when it comes to the cfs and pem.
Im so sorry you have to go through all this. I am in the process of being diagnosed with ME/CFS. I live in Germany and I had to visit more than 20 doctors (has taken me 2 years) and go through all the tests. I sent all those results to the Charité in Berlin and now in January I'll have an appointment for a final round of tests..and just then they will be able to say whether I have that or not. Its being a challenge but yeah, is what it is. One needs to endure and become kind of a doctor herself. I appreciate your work in patient advocacy...topic which is pretty much needed. Thank you very much. Keep it going.💪❤
Melissa! I'm so glad I found your channel, I've been watching some of your videos for a while now. I'm still going through the process of getting a potential fibro diagnosis, but for me it also just doesn't make sense, and there have been a few clues so far indicating endometriosis for me and my physio has mentioned my hypermobility a few times. Meanwhile my rheumatologist said no hypermobility present... It's hard to know where to go next, and your journey is so helpful for me too to learn what you are learning about it...and in turn more about my own issues potentially. Thank you for being so open and sharing your journey to help others ❤️ I'm glad you're finally getting some answers, and I know that can be a positive feeling but also very emotional, and you're so strong for battling on especially after so many years of uncertainty and dismissal. Likewise if I find anything out on my own journey I'll try to get that info to you, especially if there are things that seem to help... But at the moment still so much I'm figuring out... Sending you best wishes.
I am curious to hear your thoughts on the level of central sensitization you have and whether moving to a more protective management style will affect that? I have had numerous comments over the years about myself being hyper mobile, and I have a brace for my thumb as the joint just collapses under pressure. I do also practice yoga in a manner that is more protective and strength, than stretching and lengthening, because I find I need to protect my joints. That being said I don't have any of the dysautonomia issues at all, so I've not pursued the diagnosis. I am also curious where the guideline about it not being fibro because of another explanation/diagnosis is from. In my mind there is no reason why you cannot have both, especially given the bits of research indicating fibro is really an autoimmune disease. AID and I are friends, I seem to collect them. 😅 I've been thinking about you because, man, what a mind spin you must be going through. I hope you can find a good physio to support you so that you can manage well.
You're right. Fibromyalgia can often be secondary to hypermobility. But I (and my chiropractor) believe the hypermobility underpins everything. The joint hypermobility explains my muscle and joint pain. And the dysautonomia, bladder, gastrointestinal, bruising, strains and sprains and many other things- the criteria for HSD is like a checklist made for me. I also still have ME/CFS - that came on post virally at university. So it would be hard to know if fibro was also in the mix - but I feel there is a physiological cause for the pain and the other key symptoms (brain fog, poor sleep and fatigue) are primarily explained by the ME/CFS. Interestingly endometriosis and painful periods are often associated with HSD
I think not bombarding my nervous system with joints going out of place will calm any sensitization down. It's already come a long way in the past year with chiropractic helping. And with the endometriosis and painful periods ive def seen a decrease in this too. Saw a quote from Dr burling an EDS specialist based here in NZ in a talk he did (the quote was on a post on Instagram) that when the cause of the pain is addressed, central sensitization will go. So I can only assume learning to be mindful of my joints and stopping them going out of place so often can only improve central sensitization. I've also found great benefit from focusing on strengthening yoga poses rather than stretch. And my gentle strength routine I've been building up has really helped. Thanks for sharing and thinking of me 🩵
That's incredible. What a journey. It must be a relief that you got more clarity about your illness. I'm so sorry you ahf to go through such an ordeal in order to be properly heard/listened to. Unfortunately that's the huge issue we all go through. I still think I have fibromyalgia because I don't have hypermobility, my nervous system gets super wired by the pain and lack of decent sleep, which in turn makes my nervous system wired and exhausted. Its a vicious cycle. I have yet to find a natural sleep aid that works for me. So I have to take Mirtazapine low dose and zopiclone to get good sleep. But like a lot of people I could well have something totally different to fibro! In order to find that I'd have to battle my way through all sorts of specialists and spend lots of money, I simply don't have the energy and resources. So I'll do my best DIY!! Good luck on your journey!
For six decades, I experienced endometriosis, chronic pain, irritable bowel syndrome, incontinence, all-over joint pain, migraines, cold intolerance, gluten intolerance, and asthma. I refuse to get addicted to pain medication and steroids, so I depend on supplements and diet.
If you're able to manage without medication that's wonderful. I would never have got through the endometriosis/brutal periods without significant medication. I believe it's wise to use the tools we have to reduce the pain because pain begets pain. But every one must find their own way
@@MelissavsFibromyalgia I did Rx pain relievers for a short period but discovered that I had to increase the dosages, so I stopped. The addiction is worse than the pain relief. My pain is reduced, not eliminated.
@@MilliePat Try to avoid any anti inflammatory drugs like ibuprofen and cortisone shots if possible! The BODY MUST take a break and stick to Tylenol or kratom or better yet low dose NalTrexone for its incredible benefits and promoting longevity! As antiinflammatory drugs eat away at cartilage and will speed up deterioration! It takes 300 DAYS for your body to start to produce collagen again after using them! Peptides and NalTrexone change lives!
We are so so close for the release and use of real stemcells! Dr. Adeel Khan is doing things that are mind blowing! Keep do strength training as it the most powerful form of longevity yet discovered and know things are coming that is about to change everything as we know it!
So, I have endo, fibro, eds & other stuff.. i think they are all connected and eds doesnt necessarily mean you dont have fibro x Ps physio is a great idea!
Agree, but all my symptoms are explained by hypermobility, fibromyalgia never fully fit for me. I saw a physio for many years to no long lasting improvement. Chiropractic is helping me much more
What a story and thanks for the update. While researching check the link with neurodivergent and eds. I was diagnosed with fibro but i am questining it too as i am.hypermobile too. I think hormones as we age makes it worse. I thinks u are on to something.
Melissa glad you found what you have. I am being telling my RA doctor for years to be checked out for hypermobility, with no luck 😔. There is a great yoga book called Yoga for Bendy People by Libby Hinsley. I discovered I am in the spectrum reading this book. Good luck Melissa 😘🇨🇦🇵🇦💜🪷🙏🏽
Another thing that I have found is also very common with these conditions is autism.
Sounds very similar to my journey. Found out about my hypermobility last year. Recently learned about the MTHFR gene mutation connection to it all as well which has been helpful for me and especially when it comes to the cfs and pem.
Im so sorry you have to go through all this. I am in the process of being diagnosed with ME/CFS. I live in Germany and I had to visit more than 20 doctors (has taken me 2 years) and go through all the tests. I sent all those results to the Charité in Berlin and now in January I'll have an appointment for a final round of tests..and just then they will be able to say whether I have that or not. Its being a challenge but yeah, is what it is. One needs to endure and become kind of a doctor herself. I appreciate your work in patient advocacy...topic which is pretty much needed. Thank you very much. Keep it going.💪❤
I'm sorry for this distressing journey. I hope you get answers and support soon. ❤
@MelissavsFibromyalgia thank you. I hope so too 🙏
Sounds familiar. CfS then Fibro diagnosis, then diagnosed with hypermobile EDS in 2021 (includes POTS, Interstitial Cystitis and Endo)
Looking forward to your research on this topic as well 😊❤ lots of strength to you 😊
Melissa! I'm so glad I found your channel, I've been watching some of your videos for a while now. I'm still going through the process of getting a potential fibro diagnosis, but for me it also just doesn't make sense, and there have been a few clues so far indicating endometriosis for me and my physio has mentioned my hypermobility a few times. Meanwhile my rheumatologist said no hypermobility present... It's hard to know where to go next, and your journey is so helpful for me too to learn what you are learning about it...and in turn more about my own issues potentially. Thank you for being so open and sharing your journey to help others ❤️ I'm glad you're finally getting some answers, and I know that can be a positive feeling but also very emotional, and you're so strong for battling on especially after so many years of uncertainty and dismissal. Likewise if I find anything out on my own journey I'll try to get that info to you, especially if there are things that seem to help... But at the moment still so much I'm figuring out...
Sending you best wishes.
This is something new 😮. It's sad that we have to do all these things ourselves 😢
Please share the link for hypermobility analysis, if you can.
Here's one website with the diagnostic criteria www.hypermobility.org/hsddiagnostic-criteria
I am curious to hear your thoughts on the level of central sensitization you have and whether moving to a more protective management style will affect that?
I have had numerous comments over the years about myself being hyper mobile, and I have a brace for my thumb as the joint just collapses under pressure. I do also practice yoga in a manner that is more protective and strength, than stretching and lengthening, because I find I need to protect my joints. That being said I don't have any of the dysautonomia issues at all, so I've not pursued the diagnosis. I am also curious where the guideline about it not being fibro because of another explanation/diagnosis is from. In my mind there is no reason why you cannot have both, especially given the bits of research indicating fibro is really an autoimmune disease. AID and I are friends, I seem to collect them. 😅
I've been thinking about you because, man, what a mind spin you must be going through. I hope you can find a good physio to support you so that you can manage well.
You're right. Fibromyalgia can often be secondary to hypermobility. But I (and my chiropractor) believe the hypermobility underpins everything. The joint hypermobility explains my muscle and joint pain. And the dysautonomia, bladder, gastrointestinal, bruising, strains and sprains and many other things- the criteria for HSD is like a checklist made for me. I also still have ME/CFS - that came on post virally at university. So it would be hard to know if fibro was also in the mix - but I feel there is a physiological cause for the pain and the other key symptoms (brain fog, poor sleep and fatigue) are primarily explained by the ME/CFS. Interestingly endometriosis and painful periods are often associated with HSD
I think not bombarding my nervous system with joints going out of place will calm any sensitization down. It's already come a long way in the past year with chiropractic helping. And with the endometriosis and painful periods ive def seen a decrease in this too. Saw a quote from Dr burling an EDS specialist based here in NZ in a talk he did (the quote was on a post on Instagram) that when the cause of the pain is addressed, central sensitization will go. So I can only assume learning to be mindful of my joints and stopping them going out of place so often can only improve central sensitization.
I've also found great benefit from focusing on strengthening yoga poses rather than stretch. And my gentle strength routine I've been building up has really helped.
Thanks for sharing and thinking of me 🩵
That's incredible. What a journey. It must be a relief that you got more clarity about your illness. I'm so sorry you ahf to go through such an ordeal in order to be properly heard/listened to. Unfortunately that's the huge issue we all go through. I still think I have fibromyalgia because I don't have hypermobility, my nervous system gets super wired by the pain and lack of decent sleep, which in turn makes my nervous system wired and exhausted. Its a vicious cycle. I have yet to find a natural sleep aid that works for me. So I have to take Mirtazapine low dose and zopiclone to get good sleep. But like a lot of people I could well have something totally different to fibro! In order to find that I'd have to battle my way through all sorts of specialists and spend lots of money, I simply don't have the energy and resources. So I'll do my best DIY!! Good luck on your journey!
For six decades, I experienced endometriosis, chronic pain, irritable bowel syndrome, incontinence, all-over joint pain, migraines, cold intolerance, gluten intolerance, and asthma. I refuse to get addicted to pain medication and steroids, so I depend on supplements and diet.
If you're able to manage without medication that's wonderful. I would never have got through the endometriosis/brutal periods without significant medication. I believe it's wise to use the tools we have to reduce the pain because pain begets pain. But every one must find their own way
@@MelissavsFibromyalgia I did Rx pain relievers for a short period but discovered that I had to increase the dosages, so I stopped. The addiction is worse than the pain relief. My pain is reduced, not eliminated.
@@MilliePat Try to avoid any anti inflammatory drugs like ibuprofen and cortisone shots if possible! The BODY MUST take a break and stick to Tylenol or kratom or better yet low dose NalTrexone for its incredible benefits and promoting longevity! As antiinflammatory drugs eat away at cartilage and will speed up deterioration! It takes 300 DAYS for your body to start to produce collagen again after using them! Peptides and NalTrexone change lives!
We are so so close for the release and use of real stemcells! Dr. Adeel Khan is doing things that are mind blowing! Keep do strength training as it the most powerful form of longevity yet discovered and know things are coming that is about to change everything as we know it!
Hi Melissa, can you share with us your pain management plan?
This is the blog post about my pain management plans :) www.melissavsfibromyalgia.com/the-rule-that-changed-my-pain-management-game/
Did you try taping and dry needles?
Taping hurt me badly. Dry needles also hurt unless the practitioner put them in gently - I did this therapy for many years with minimal improvement
So, I have endo, fibro, eds & other stuff.. i think they are all connected and eds doesnt necessarily mean you dont have fibro x
Ps physio is a great idea!
Agree, but all my symptoms are explained by hypermobility, fibromyalgia never fully fit for me. I saw a physio for many years to no long lasting improvement. Chiropractic is helping me much more
What a story and thanks for the update. While researching check the link with neurodivergent and eds. I was diagnosed with fibro but i am questining it too as i am.hypermobile too. I think hormones as we age makes it worse. I thinks u are on to something.
Melissa glad you found what you have. I am being telling my RA doctor for years to be checked out for hypermobility, with no luck 😔. There is a great yoga book called Yoga for Bendy People by Libby Hinsley. I discovered I am in the spectrum reading this book. Good luck Melissa 😘🇨🇦🇵🇦💜🪷🙏🏽