Fibromyalgia diagnosis and online classes

Posted by toony @toony, Jul 13, 2023

I was diagnosed with fibromyalgia in May of this year... what I find very ridiculous is taking online courses how to help your pain by help balancing life stress .. money etc.. if people could do that we wouldnt need doctors .. and this is my treatment ?. They want this to be taken seriously ? Even after I said I didnt want extra bills and she sat there lied to my face no extra cost... I get a folder telling me about these online classes at 495.00 a pop 3 to be exact and insurance may not cover them... and this will help with my stress? And help with my pain ? If they want this to be taken seriously then treat it like it's to be treated. And I prefer a doctor not a NP.. sorry I don't pay 2000 grand a month for an NP

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I know.. she sat there saying oh we can help talking about to meds to help me ... then I get this packet about classes and taking quizzes about them.. who has the time or money to do that.. let alone feeling like crap.. I went for help not to be told I was stressed etc.. everyone is .. when I opened that packet and see that I'm like no .. I won't do that. If it was 100.00 maybe but fir 3 classes at 1500.00 no

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I was told to take an online class, my Doctor did not say that it cost me money. There was a 2 day in person class that cost money. It did not help much. Just went over what Fibromyalgia is, it is a difficult condition to describe. My Doctor was informative, letting me know that Fibro is a condition that is complex and that there is a lot they do not know. Get a second opinion and maybe a third, to help you understand Fibromyalgia. CBT is supposed to be the most helpful because research is showing that the pain is in the head, not necessarily in the body. It feels like it is, feels that way to me. I also see a Chiropractor and starting to do EMDR. Fibromyalgia is not a simple condition, it takes research and an open mind.

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@ripley

I have read the Mayo doesn't rely on drugs for Fibro because many of them don't provide enough relief to balance the side effects. Google "Mayo fibromyalgia managing the pain experience" which includes this: "Cognitive behavioral therapy (CBT) is a specific approach...that’s the most effective and most common way to manage fibromyalgia symptoms. CBT helps you develop the skills you need to be in charge of living your life, rather than having the symptoms run your life... learning to challenge your negative thoughts and adopt more realistic ways of thinking about your pain — and change how it makes you feel. " But classes costing almost $500 each seems excessive.
Most doctors don't understand Fibro, other than prescribing drugs, so I don't know where to begin to find good treatment or CBT therapy in my area. Not to mention sessions that are reasonably priced or covered by my insurance
After having symptoms for a year, I was diagnosed with Fibro in Dec 2022. The pain went into remission for a few months, and came back two months ago. I recently went to a pain clinic in MN and got a prescription for Low Dose Naltrexone, a newer treatment being tried for chronic pain and the only prescription med I'm taking now. It can take months to build up to the maintenance dose of LDN to help with pain, and not everyone responds. I'd like to sign up for medical marijuana.
I'm in various degress of pain every day and try to keep moving as much as I can, which is hard to do when you're in pain. I'm also battling insomnia. A big stressor is when people don't believe you're in such pain, that you're imagining your symptoms, or they don't believe fibromyalgia is even a "real" disease. Some of them might have arthritis pain, etc and don't understand why I can't just get on with things, like they do.
Hoping you (and I) find something that helps with this disease.

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When I was going through my first years of fibromyalgia I tried almost everything to include deep massage, acupuncture, Chinese herbs, Chinese herbal steam, marijuan and various meds. I was very fortunate to find a marijuana dispensary that had a person who helped people seeking help for pain. She was wonderful. And yes, the marijuana did help.
I really feel having my fibromyalgia ‘5 page documented diagnosis’ from Mayo made working with doctors less stressful as far as presenting as a person with a real diagnosis. I’ve met several people who felt their doctors didn’t understand or doubted their diagnosis. With that document in hand, I don’t ever have that problem. I hope you find the right solution for your symptoms.

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@carissadennery

I was told to take an online class, my Doctor did not say that it cost me money. There was a 2 day in person class that cost money. It did not help much. Just went over what Fibromyalgia is, it is a difficult condition to describe. My Doctor was informative, letting me know that Fibro is a condition that is complex and that there is a lot they do not know. Get a second opinion and maybe a third, to help you understand Fibromyalgia. CBT is supposed to be the most helpful because research is showing that the pain is in the head, not necessarily in the body. It feels like it is, feels that way to me. I also see a Chiropractor and starting to do EMDR. Fibromyalgia is not a simple condition, it takes research and an open mind.

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I have never hear it described in the head. My 3 Daughters have never been told that. I know our bodies feel pain.All meds can cause dependence on our minds, (brains). I appreciate your input, thank you.

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@kathleenshank68

I have never hear it described in the head. My 3 Daughters have never been told that. I know our bodies feel pain.All meds can cause dependence on our minds, (brains). I appreciate your input, thank you.

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I was not told that it was in the head, I researched the research. The pain is very real in the body, I didn't say it wasn't. Look up YouTube videos and Medical Articles, not just MedMD and other sites. Find medical journals. Fibro is a condition that is difficult to diagnosis and explain.

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@magluchi

When I was going through my first years of fibromyalgia I tried almost everything to include deep massage, acupuncture, Chinese herbs, Chinese herbal steam, marijuan and various meds. I was very fortunate to find a marijuana dispensary that had a person who helped people seeking help for pain. She was wonderful. And yes, the marijuana did help.
I really feel having my fibromyalgia ‘5 page documented diagnosis’ from Mayo made working with doctors less stressful as far as presenting as a person with a real diagnosis. I’ve met several people who felt their doctors didn’t understand or doubted their diagnosis. With that document in hand, I don’t ever have that problem. I hope you find the right solution for your symptoms.

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Can you offer more info on what kind of marijuana helped? Are you in a medical marijuana program, or are you referring to gummies that you can buy in states that where marijuana is legally sold?

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At the time I was using marijuana, we were living in Scottsdale, Arizona. I tried smoking and chocolate. Unfortunately, I cannot remember what dose or type I was on other than it was low THC and high CBD. You do have to be careful of what you are buying because the chocolate I was using, one small square a day, ended up making me sick. Apparently it had gone moldy and I wasn’t aware the bottom was moldy. If I continue to experience more severe symptoms, I would definitely try marijuana again before a drug like gabapentin. My concern while using it was how it affected me. You just have to be very careful of how long the cognitive effects last. Also, any type of marijuana I was using in Scottsdale I couldn’t find it in any place. I’ve lived since then. So, it is trial and error. I hope this helps.

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@carissadennery

I was not told that it was in the head, I researched the research. The pain is very real in the body, I didn't say it wasn't. Look up YouTube videos and Medical Articles, not just MedMD and other sites. Find medical journals. Fibro is a condition that is difficult to diagnosis and explain.

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I misunderstood, I am so sorry . I was diagnosed with Fibromyalgia, as well, but at the same time I had been in the middle of a hospital stay, for a flare up, with my COPD, too many Doctors telling me too many things and meds I wasn’t used to. I’m so sorry for my comments. Please forgive me.
Kathleen Gilliam

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Agreed, that was very misleading of them and extremely unhelpful. I’ve dealing and living with serious cases of CFS & FIBROMYALGIA for over 30 years. Of course, we are all limited by the treatments we know about and try from what we read and research I addition to the physicians and health care givers who treat us.
Everybody responds less or more favorably to the more established treatments in addition to some of the others.
Frankly, the only thing that I’ve found to be efficacious for me are “opioids!” I’ve tried just about every drug, therapy and concoction utilized to treat Fibromyalgia but wit kittle to no success. I can say the same for my Chronic Fatigue Syndrome. I’ve personally spent over $300,000 in my own money (non reimbursable through insurance) ti find some kind of drug, therapy or protocol to measurably assist me. I utilize opioids because they’re the most effective, plain and simple.
They’ve not only served me well by have saved my life since 1995 when I first became Ill and totally debilitated from CFS, Fibromyalgia and shortly thereafter, Chiari Malformation, “CM!””
As there are no cures or even any certainly what causes these disease states other than the “CM!” Every patient is pretty much on their own along with whatever level ov caring and empathetic physician they have to improve their overall condition. Unfortunately, I contracted about the 5% worst cases of these disease states which continues to make it a very formidable task to continue ti live with them day in and day out. Fortunately, I have a very loving, beautiful and sexy, intelligent and successful wife who loves me for who and what I am. This is truly a gift from GOD. I also have my companion canine, “GIDGET JOY,” a Miniature Austrian Shepherd who next to my wife, I love more than anything in the world. The love and care I receive are the best medicine I can find. The opioids manage the pain sufficiently enough so I can participate in life to smaller degrees and no longer have to be bed ridden and home confined 100% of the time line I was for almost 25 of the 35 years I’ve been totally disabled.
All any of us can do is the best we can but it surely helps to have others who love and care for you very much.
I am quite fortunate,
Best wishes to you all,
Philip Snowdon

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I find a good therapist is most helpful. You can get free online information. No reason to pay for an online course. Mayo has a 3 week pain group that you goto in person. I wouldn't ever do online courses. Stress in America is insane.

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