Thank you all so much for your insights and efforts iby encouraging the spread of accurate information about a very misunderstood syndrome. In particular I foundI uplifting the comment made by Psychologist Claire about the significance and positive impact of instilling hope in a sufferer's life . Since hope is usually the first victim of trauma. I appreciate how she kindly reflected on the fact that that hope means different things to different people and the connotation of hope does infact vary. Many thanks again to you all:)
I’m now going into approximately 24 year’s or more of cfs/fibromyalgia. Have never found a doctor or specialist who truly made me feel satisfied with their help. I had two major surgeries in my early thirties, so literally was then put on HRT for many many year’s. Diagnosed with Under active thyroid. Though I’m slim & was very energetic until I’d collapse with exhaustion of trying to act normally though inside I felt I was dying. Eventually at 40 yrs old I had to retire from family business. I’m now 63 yrs old & it’s affected my life, family life & loss of friendship’s due too looking well & you would think I’m ok. I constantly let friend’s down & they don’t understand but now family do because they have grown with it. It break’s my heart that it’s such a cruel illness. I did do water aerobics, personal trainer, Pilates & Callanetics. And yoga, unfortunately I did try everything but after exercises I’d be bed bound unable to move for the next week or two. After the last fall I broke my foot in half I was considered to have MS but after another MRI I thankfully didn’t have it. Let with my fibromyalgia that just constantly rules my life though I fight the fight every day!
Your story is almost identical to mine. Took me 10 years to get diagnosed. Have been suffering from this devastating, debilitating illness for nearly 30 years. Like you it has totally destroyed my life. I haven’t been living for 30 years with .Fibro, I have just been surviving. I just wish I could get some relief for the years I have left. I’m 76 now but can’t see any help in sight. Like you the only thing which gives me a small amount of relief is gentle swimming lengths. I can’t even do the water aerobics anymore. It just exacerbates my pain. I also do gentle yoga. The last year I am having walking difficulties where my legs and hips feel like lead and I can only walk very short distances without a walker. Also recently having severe numbness and tingling in my hands and arms. It just never ends and every year I get more symptoms. Luckily for me I do have some friends who have stood by me and two wonderful sons. Mind you my sons don’t understand why I can’t do more as I look ok. They think I should be traveling and doing more. They just have no idea the excruciating pain and discomfort I deal with every waking moment. Take care of yourself my dear. Big hugs from one pain sufferer to another. We have to try to stay positive and hope for a miracle some day soon. ❤️🇨🇦❤️🇨🇦
I’m sorry for both of you, it’s so hard to be diagnosed. I find walking is best for me, if I do too much exercise I get very fatigued, and the pain keeps me awake alt night, then I can’t do much at all. People don’t understand, as we look well. and I can move fairly well.
Why does it take over 3years to see a fibromyalgia clinic? August 2021 I was diagnosed and I still haven,t got any help for the pain which is catastrophic since my daughter,s death Aug.30/23 from a suspicious overdose from a sedative illegal in Canada and phentanyl. I had been denied my money back from a trip I borrowed money to go on a vacation. I paid 3 x the price as Covid was on and I had to book directly with Norwegian Cruiseline and not through my usual agent in ThunderBay Shawn Freisen, Expedia or Pat Decouchie, Sell off Vacations. The most important thing is I paid $800 to three insurance companies for $5 million in health, trip interruption, trip cancellation . Then 2 car accidents that I wasn,t responsible for and have a perfect driving record for 58 years I was thrown out of the CAA. I was charged with those accidents as the police wouldn,t let me report the accident and I went there 3x thatFriday with a friend. I now have to pay $375 a month for car and apt insurance and I can,t afford it. I was paying $62 a month for both.
I am on CBT,Accupuncture, walk every day with a walker and fall monitor. No successful meds work for me. Haven,t slept for a year due to pressure pain on 18 ares and bed broken since someone jumped on my bed and got in with a key. Was fixed for one month and it fell two times againFEB 24.
Thank you this is excellent, thanks for mentioning itching skin, this now falls into place it mostly affects my scalp, and occasional I have hair loss. I wasn’t aware fibrous affects the skin. The Drs have never told me that.
Thank you for this discussion. I have hd Fibromyalgia for 30: years. I also think I may have Lupus. I also had Endometriosis. Could you please discuss or do another video on the similarities of Lupus and Fibro. I have heard that a lot of people have both or even three. (Fibromyalgia, Lupus and Endometriosis) Thank you. ❤️🇨🇦❤️🇨🇦
My mother had lupus at 15 died when I was 15 she had me early I only weighted 2and half lbs brother full term only 5 lbs … read you comment I have both idk how you can get secondary illness and then another
I just hit on a subject today about fibromyalgia. It was seen on utube America . Thy have stated a new treatment it’s called Savella, unfortunately it’s not approved in uk , if everyone that has this horrible disease ,why will the government not allow the uk people to recieve this medication , Because reading the reviews this medication is a life saver , if anyone can help
Can Diplopia (Strabismus) be a symptom of fibromyalgia? (Eye muscle involved!?) Otherwise all normal tests: multiple sclerosis, myasthenia gravis, thyroid, etc... Acquired in the last three years and worsening over time.
I’d say you’re wrong on it not being life threatening it causes many other illnesses that are life threatening. For example sleep apnea which takes up from 10-20yrs off life expectancy. Hypertension and many other related issues. I’ve accepted that I won’t live long and the medicines I use will shorten my life even more. But I’d rather die on my feet than in a bed in pain. I exhausted every possible legal option in my country and went to my own scientific methods and did my own hypothesis and experiments on myself and have come much further ahead in progress than probably anyone else with my conditions. I don’t see anyone with fibromyalgia lifting weights to my capabilities or my size of muscle.
never thought I could get rid of this frustrating pain,until I came across Dr Obinyan on UA-cam, whom cured me from fibromyalgia,i am forever grateful doc🙏🙏🙏
I went to a Doctor yesterday regarding my muscles constantly being stuck in an overexcited state, to the point of my muscles being completely tense all through the night, on Amitrityline, whilst asleep , and he bought up a page on his computer screen headed "How long should I treat a chronic pain Patient". This just made me feel more dismissed along with the fact that I have had previous short courses of muscle relaxants which he just refused to administer. I have taken steps to reduce the Tramadol I am on myself but now it's levelled out at 50mg SR twice daily, reduced over a few months from 200mg SR twice daily, the symptoms have gotten worse and now I want help it is not forthcoming from any Doctor that I see. I try to do Tai Chi, swimming and walking but I am left completely exhausted for days or weeks after. We as Fibromyalgia patients try many self-management techniques but for some reason this is not seen as enough. Also there is no help for when the brain fog severely impacts your life, I now can't communicate my needs properly and can't remember to write down things for meetings so completely get upset and frustrated after a meeting with a Doctor or a Rheumatologist because what I intended to get across comes out completely wrong. It has even caused me to lose my job and I can't go through the Benefits claims process because of it. Even charities are struggling to help now after Covid. I think the only way we can tailored help is by going private but this is not an option for most people, especially now.
How terrible of that doctor. How can they call themselves doctors when they don’t help you with your pain. Disgusting. I have been on a low dose of oxycodone for a number of years. My doctor is desperately trying to get me off them. I have tried every kind of pain medication and cannot tolerate any of them. I get very severe side effects. She asked me to see another doctor while she was away on vacation. This Doctor also says I shouldn’t be on them. She wants me to try “yet another” medication (a mood changing drug). I don’t have a problem with my moods, only frustration that I can’t function properly. She told me I will have side effects, but to stick with it for at least a month. I told her that when I was I. A really severe flare up for over a month one day I took 2 pills instead of 1. It totally calmed my symptoms down and I could function. I went swimming, went for a short walk and did some shopping. Before then, I could hardly get out of bed. Also when I was in the flare up, my blood pressure went up and so did my blood sugar. I told her either I take oxycodone or have a heart attack from my blood pressure going up. I know none of the drugs are good for us, but I am 77 now and would just like a few years of relief from my constant pain. When I talked to my Pharmacist about the new pill this doctor wants me to go on, she said the side effects will be pretty bad for the first 3 - 4 weeks. Why can’t they just leave me alone and keep me comfortable with my pain meds. Every time they give me something new it messes up my whole body and puts my Fibro into a flare. Just sooo frustrating. If these doctors have to suffer like we do, they would be taking anything they could to get relief. Hope you get some help my dear. Take care. Hugs from a fellow sufferer.❤️🇨🇦❤️🇨🇦
Me again. I also lost my job many years ago and it was very difficult on our family income. Just a hint. I keep a notepad next to my bed and another one next to my chair. Whenever I think of things I need to tell the doctor, I write it down then and there. Then before I go to see them, I rewrite it with the most important things on top. It definitely helps, as, like you my Fibro fog is awful and I always forget to tell them things.
@pamelasmith2625 Thank you for your suggestion 🙏 I do try to write things down, I now keep notepads in every room and the car. I have just started recording notes on my phone too, but still forgetting that I've done that on some days 😏 I just wish that there was a machine invented where we could go to the doctor, we both plug ourselves into this machine, and the machine would let the doc feel our pain. If only when something is working regarding meds, they just leave us on it with regular medical reviews and not try to keep changing or stopping them. I truly hope that you can get to a place of manageable pain, but I feel that when it comes to chronic pain and meds it will be a struggle for us sufferers for a number of years yet. Sending you virtual hugs 🫂 Try to stay strong ❤️
@@pamelasmith2625 I agree with you, if you find a drug that helps why not stick to it, let’s face it, it won’t take the pain away completely , however we need something to get us through the day, and get us out in society to improve our quality of life . I’m 77 too, if I’m on a meds to get me through the day and I’m told they’re addictive, then who cares at our age !! I take Tramadol 2-3 times a day and Panadol in between. I’ve tried a long list of drugs, antidepressant meds for nerve pain make me very depressed, or make me put on weight. We know what helps, having a caring understanding Dr is a blessing. I have one, who knows I don’t like taking meds, he also knows I need to manage my pain. If one Dr doesn’t help then look for another. Believe me if doctors had a couple of days with fibromyalgia, they’d soon know what it’s about. Watch a Dr Rutherford video he has fibromyalgia, he knows what it’s all about. Good luck my thought are with you.
The Drs name is Martin Rutherford he has fibromyalgia along with thyroid problems. This Dr is excellent he knows his stuff. He has over 40 years in practice please UTube him. Good luck never give up on finding ways to improve our lives with fibromyalgia. 💕
Thank you all so much for your insights and efforts iby encouraging the spread of accurate information about a very misunderstood syndrome. In particular I foundI uplifting the comment made by Psychologist Claire about the significance and positive impact of instilling hope in a sufferer's life . Since hope is usually the first victim of trauma. I appreciate how she kindly reflected on the fact that that hope means different things to different people and the connotation of hope does infact vary.
Many thanks again to you all:)
I’m now going into approximately 24 year’s or more of cfs/fibromyalgia. Have never found a doctor or specialist who truly made me feel satisfied with their help. I had two major surgeries in my early thirties, so literally was then put on HRT for many many year’s. Diagnosed with Under active thyroid. Though I’m slim & was very energetic until I’d collapse with exhaustion of trying to act normally though inside I felt I was dying. Eventually at 40 yrs old I had to retire from family business. I’m now 63 yrs old & it’s affected my life, family life & loss of friendship’s due too looking well & you would think I’m ok. I constantly let friend’s down & they don’t understand but now family do because they have grown with it. It break’s my heart that it’s such a cruel illness. I did do water aerobics, personal trainer, Pilates & Callanetics. And yoga, unfortunately I did try everything but after exercises I’d be bed bound unable to move for the next week or two. After the last fall I broke my foot in half I was considered to have MS but after another MRI I thankfully didn’t have it. Let with my fibromyalgia that just constantly rules my life though I fight the fight every day!
Your story is almost identical to mine. Took me 10 years to get diagnosed. Have been suffering from this devastating, debilitating illness for nearly 30 years. Like you it has totally destroyed my life. I haven’t been living for 30 years with .Fibro, I have just been surviving. I just wish I could get some relief for the years I have left. I’m 76 now but can’t see any help in sight. Like you the only thing which gives me a small amount of relief is gentle swimming lengths. I can’t even do the water aerobics anymore. It just exacerbates my pain. I also do gentle yoga. The last year I am having walking difficulties where my legs and hips feel like lead and I can only walk very short distances without a walker. Also recently having severe numbness and tingling in my hands and arms. It just never ends and every year I get more symptoms. Luckily for me I do have some friends who have stood by me and two wonderful sons. Mind you my sons don’t understand why I can’t do more as I look ok. They think I should be traveling and doing more. They just have no idea the excruciating pain and discomfort I deal with every waking moment. Take care of yourself my dear. Big hugs from one pain sufferer to another. We have to try to stay positive and hope for a miracle some day soon. ❤️🇨🇦❤️🇨🇦
I’m sorry for both of you, it’s so hard to be diagnosed. I find walking is best for me, if I do too much exercise I get very fatigued, and the pain keeps me awake alt night, then I can’t do much at all. People don’t understand, as we look well. and I can move fairly well.
Hi i have just subscribed ...from Dublin ireland
Why does it take over 3years to see a fibromyalgia clinic? August 2021 I was diagnosed and I still haven,t got any help for the pain which is catastrophic since my daughter,s death Aug.30/23 from a suspicious overdose from a sedative illegal in Canada and phentanyl. I had been denied my money back from a trip I borrowed money to go on a vacation. I paid 3 x the price as Covid was on and I had to book directly with Norwegian Cruiseline and not through my usual agent in ThunderBay Shawn Freisen, Expedia or Pat Decouchie, Sell off Vacations. The most important thing is I paid $800 to three insurance companies for $5 million in health, trip interruption, trip cancellation . Then 2 car accidents that I wasn,t responsible for and have a perfect driving record for 58 years I was thrown out of the CAA. I was charged with those accidents as the police wouldn,t let me report the accident and I went there 3x thatFriday with a friend. I now have to pay $375 a month for car and apt insurance and I can,t afford it. I was paying $62 a month for both.
I am on CBT,Accupuncture, walk every day with a walker and fall monitor. No successful meds work for me. Haven,t slept for a year due to pressure pain on 18 ares and bed broken since someone jumped on my bed and got in with a key. Was fixed for one month and it fell two times againFEB 24.
Thank you so much from Buenos Aires, Argentina for this Webminar !!!
Thank you this is excellent, thanks for mentioning itching skin, this now falls into place it mostly affects my scalp, and occasional I have hair loss. I wasn’t aware fibrous affects the skin. The Drs have never told me that.
I’ve liked and subscribed, I’m watching from Australia 🇦🇺
Strange how fibromyalgia can affect you at any age. I’m glad I had it in my 70s I’m so sorry for young people who have this horrible disease.
I’m in the north of Ireland , if anyone reading this subject please let us know
Thank you
Thank you for this discussion. I have hd Fibromyalgia for 30: years. I also think I may have Lupus. I also had Endometriosis. Could you please discuss or do another video on the similarities of Lupus and Fibro. I have heard that a lot of people have both or even three. (Fibromyalgia, Lupus and Endometriosis) Thank you. ❤️🇨🇦❤️🇨🇦
There's a test that helps diagnose lupus along with symptoms. You need see doctor rheumatology for testing
@@paulasheerin9781 I have had the Ana test done, but it came back negative. Is that the test you are talking about?
My mother had lupus at 15 died when I was 15 she had me early I only weighted 2and half lbs brother full term only 5 lbs … read you comment I have both idk how you can get secondary illness and then another
I wish I could skip this area as I have been diagnosed at age72 years of age. I have 4 healthy children and no problem getting pregnant .
I just hit on a subject today about fibromyalgia. It was seen on utube America . Thy have stated a new treatment it’s called Savella, unfortunately it’s not approved in uk , if everyone that has this horrible disease ,why will the government not allow the uk people to recieve this medication , Because reading the reviews this medication is a life saver , if anyone can help
Can Diplopia (Strabismus) be a symptom of fibromyalgia? (Eye muscle involved!?) Otherwise all normal tests: multiple sclerosis, myasthenia gravis, thyroid, etc... Acquired in the last three years and worsening over time.
Hi new subscriber from scotland
Welcome, I’m from down under Australia 🇦🇺🐨
Damn i got fibromyalgia after COVID... Is that the 'trauma'?
I’d say you’re wrong on it not being life threatening it causes many other illnesses that are life threatening. For example sleep apnea which takes up from 10-20yrs off life expectancy. Hypertension and many other related issues.
I’ve accepted that I won’t live long and the medicines I use will shorten my life even more. But I’d rather die on my feet than in a bed in pain. I exhausted every possible legal option in my country and went to my own scientific methods and did my own hypothesis and experiments on myself and have come much further ahead in progress than probably anyone else with my conditions. I don’t see anyone with fibromyalgia lifting weights to my capabilities or my size of muscle.
Hello everyone
Hello from Australian 😊
treatment 2022
never thought I could get rid of this frustrating pain,until I came across Dr Obinyan on UA-cam, whom cured me from fibromyalgia,i am forever grateful doc🙏🙏🙏
Cured?what exactly did he prescribe. That Cured it.
Cured how 🤷🏼♀️
I don’t believe there is a cure, better managed yes 👍 cure no.
Can I ask how you got cured
I went to a Doctor yesterday regarding my muscles constantly being stuck in an overexcited state, to the point of my muscles being completely tense all through the night, on Amitrityline, whilst asleep , and he bought up a page on his computer screen headed "How long should I treat a chronic pain Patient". This just made me feel more dismissed along with the fact that I have had previous short courses of muscle relaxants which he just refused to administer. I have taken steps to reduce the Tramadol I am on myself but now it's levelled out at 50mg SR twice daily, reduced over a few months from 200mg SR twice daily, the symptoms have gotten worse and now I want help it is not forthcoming from any Doctor that I see. I try to do Tai Chi, swimming and walking but I am left completely exhausted for days or weeks after. We as Fibromyalgia patients try many self-management techniques but for some reason this is not seen as enough. Also there is no help for when the brain fog severely impacts your life, I now can't communicate my needs properly and can't remember to write down things for meetings so completely get upset and frustrated after a meeting with a Doctor or a Rheumatologist because what I intended to get across comes out completely wrong. It has even caused me to lose my job and I can't go through the Benefits claims process because of it. Even charities are struggling to help now after Covid. I think the only way we can tailored help is by going private but this is not an option for most people, especially now.
How terrible of that doctor. How can they call themselves doctors when they don’t help you with your pain. Disgusting. I have been on a low dose of oxycodone for a number of years. My doctor is desperately trying to get me off them. I have tried every kind of pain medication and cannot tolerate any of them. I get very severe side effects. She asked me to see another doctor while she was away on vacation. This Doctor also says I shouldn’t be on them. She wants me to try “yet another” medication (a mood changing drug). I don’t have a problem with my moods, only frustration that I can’t function properly. She told me I will have side effects, but to stick with it for at least a month. I told her that when I was I. A really severe flare up for over a month one day I took 2 pills instead of 1. It totally calmed my symptoms down and I could function. I went swimming, went for a short walk and did some shopping. Before then, I could hardly get out of bed. Also when I was in the flare up, my blood pressure went up and so did my blood sugar. I told her either I take oxycodone or have a heart attack from my blood pressure going up. I know none of the drugs are good for us, but I am 77 now and would just like a few years of relief from my constant pain. When I talked to my Pharmacist about the new pill this doctor wants me to go on, she said the side effects will be pretty bad for the first 3 - 4 weeks. Why can’t they just leave me alone and keep me comfortable with my pain meds. Every time they give me something new it messes up my whole body and puts my Fibro into a flare. Just sooo frustrating. If these doctors have to suffer like we do, they would be taking anything they could to get relief. Hope you get some help my dear. Take care. Hugs from a fellow sufferer.❤️🇨🇦❤️🇨🇦
Me again. I also lost my job many years ago and it was very difficult on our family income. Just a hint. I keep a notepad next to my bed and another one next to my chair. Whenever I think of things I need to tell the doctor, I write it down then and there. Then before I go to see them, I rewrite it with the most important things on top. It definitely helps, as, like you my Fibro fog is awful and I always forget to tell them things.
@pamelasmith2625 Thank you for your suggestion 🙏 I do try to write things down, I now keep notepads in every room and the car. I have just started recording notes on my phone too, but still forgetting that I've done that on some days 😏 I just wish that there was a machine invented where we could go to the doctor, we both plug ourselves into this machine, and the machine would let the doc feel our pain. If only when something is working regarding meds, they just leave us on it with regular medical reviews and not try to keep changing or stopping them.
I truly hope that you can get to a place of manageable pain, but I feel that when it comes to chronic pain and meds it will be a struggle for us sufferers for a number of years yet.
Sending you virtual hugs 🫂 Try to stay strong ❤️
@@pamelasmith2625 I agree with you, if you find a drug that helps why not stick to it, let’s face it, it won’t take the pain away completely , however we need something to get us through the day, and get us out in society to improve our quality of life . I’m 77 too, if I’m on a meds to get me through the day and I’m told they’re addictive, then who cares at our age !! I take Tramadol 2-3 times a day and Panadol in between.
I’ve tried a long list of drugs, antidepressant meds for nerve pain make me very depressed, or make me put on weight. We know what helps, having a caring understanding Dr is a blessing. I have one, who knows I don’t like taking meds, he also knows I need to manage my pain. If one Dr doesn’t help then look for another. Believe me if doctors had a couple of days with fibromyalgia, they’d soon know what it’s about.
Watch a Dr Rutherford video he has fibromyalgia, he knows what it’s all about. Good luck my thought are with you.
The Drs name is Martin Rutherford he has fibromyalgia along with thyroid problems. This Dr is excellent he knows his stuff. He has over 40 years in practice please UTube him. Good luck never give up on finding ways to improve our lives with fibromyalgia. 💕