1. < Fibromyalgia

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2023
In reply to @toony "There is no reason anyone needs to take classes to manage how to lower stress etc....." + (show)
@toony

There is no reason anyone needs to take classes to manage how to lower stress etc.. nobodies life is perfect thats just a money grab technique to me.

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@toony, I encourage you to share your feedback with the Office of Patient Experience.
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

REPLY
covidstinks2023 | @covidstinks2023 | Jul 13, 2023
In reply to @toony "I am a diabetic been for 32 years.. I had stage 4 head and neck cancer..." + (show)
@toony

I am a diabetic been for 32 years.. I had stage 4 head and neck cancer ..I have no thyroid was fried with all tge harsh radiation. I use Stevia when I even use it .. I kinda got use to no sugar or anything to help sweeten things .. been losing weight have no clue why ..not even trying .. I hardly can move head hurts so bad .. I lose my eye sight but, comes back. And the headache clinic told me do not use tylenol or ibuprofen too much. I havent been able to sleep for years and melatonin does not work for me. The cancer center in zion Illinois had me up to 25 mg. I do use Voltaren a lot way to much ..

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Toony, Bless you. You have been through much more than I have and I am so sorry. I pray for answers for you. Hugs....

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 13, 2023
In reply to @covidstinks2023 "Wow Toony, Sounds like you have been through the mill. I have had fibromyalgia for 28..." + (show)
@covidstinks2023

Wow Toony, Sounds like you have been through the mill. I have had fibromyalgia for 28 years. It is really flared up now with the high humidity and heat. It is a hard disease to treat. Please have your thyroid completely checked because Hashimotos often goes along with fibromyalgia. Good sleep is a great factor into better fibro days, avoid the stresses than you can, learn to say "NO", rest during the day if you need too take a nap....your body needs it, get a massage, use Voltaren Gel for pain, use heatpacks, soak in the tub in Epsom salt, Take 200 mg of Magnesium daily, try Melatonin 5 mg for sleep (Fibro patients tend not to sleep deep), a very low dose of Flexeril 5 mg (Prescription) has helped me greatly, water aerobics, move as much as you can or you will get stiff, eat clean, drink lots of water, get off aspartame and use stevia, steer clear of sweets as sugar causes inflammation, if you need to lose weight - try and get the extra pounds off.....it helps, Motrin or Advil if you can tolerate NSAIDs or Extra Strength Tylenol for pain. If you need something stronger you may have to go to a pain clinic if your primary will not prescribe it. Tenseness ramps up fibromyalgia....I repeat, tenseness ramps up fibromyalgia. Eat a lot of protein, steer clear from the fast food stuff, go to bed earlier at night, stay away from as much negativity as you can, like the news, social media negativity, etc., I hope some of this helps. Praying for you.

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@covidstinks2023 Wow, thank you, you have packed a good amount of helpful pain-management strategies in your reply. Living with chronic pain takes strategy, problem solving and basically an overall attack. I think folks eventually come to realize that the pain-management tool box can never be too big. I used to think I needed to solely rely on doctors and what they prescribed to manage pain, only to learn that my pain was chronic which meant "for a life time". I learned to be an active participant in self-management and self-care to help create a complementary balance to what doctors offer. You mention good sleep hygiene, a healthy diet and stress management techniques. You are absolutely right, tenseness is no good for chronic pain it only induces it more. So, thank you again for bringing many valid strategies to the table. You're sharing is valuable. Have a lovely evening, I hope sleep is good to you.

REPLY
magluchi | @magluchi | Jul 14, 2023

It looks like you’re getting a lot of advice that may be helpful. When I first got fibro I joined a support group. Everyone had a different approach and remedy to this horrible disease. It made me feel a lot better to sit around a table and talk to people who actually had the disease and were managing it. At that point I was buried by the disease and all the associated problems it created for me. It was completely overwhelming. I’m sorry you had a bad experience at Mayo. I am very grateful that Mayo was able to diagnose my fibromyalgia, and I had that documentation to share with doctors outside of the Mayo system.

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toony | @toony | Jul 14, 2023

Well sure I am also.. but I sat there and went through all these tests and said well no one takes it seriously and went on .. then tells me to take online classes and quizzes etc.. I mean I don't feel good and sure alot of stuff stress does contribute to.. but adding crap like that quizzes and this will cost me 1500.00 really like that won't add to my stress .. went through stage 4 cancer .. tons of medical bills and open heart surgery and main reason I went was because of my cartroid arteries closing shut because of tge harsh radiation over my neck... which they can't do anything for.. to much scar tissue. Now want to dump more unnecessary cost .. when they can just help me with the pain .. I feel they see a dollar sign on my forehead and frankly I don't want to add to my medical debt for my family.

REPLY
Judyinjeans. | @judyingenes | Jul 15, 2023
In reply to @covidstinks2023 "Wow Toony, Sounds like you have been through the mill. I have had fibromyalgia for 28..." + (show)
@covidstinks2023

Wow Toony, Sounds like you have been through the mill. I have had fibromyalgia for 28 years. It is really flared up now with the high humidity and heat. It is a hard disease to treat. Please have your thyroid completely checked because Hashimotos often goes along with fibromyalgia. Good sleep is a great factor into better fibro days, avoid the stresses than you can, learn to say "NO", rest during the day if you need too take a nap....your body needs it, get a massage, use Voltaren Gel for pain, use heatpacks, soak in the tub in Epsom salt, Take 200 mg of Magnesium daily, try Melatonin 5 mg for sleep (Fibro patients tend not to sleep deep), a very low dose of Flexeril 5 mg (Prescription) has helped me greatly, water aerobics, move as much as you can or you will get stiff, eat clean, drink lots of water, get off aspartame and use stevia, steer clear of sweets as sugar causes inflammation, if you need to lose weight - try and get the extra pounds off.....it helps, Motrin or Advil if you can tolerate NSAIDs or Extra Strength Tylenol for pain. If you need something stronger you may have to go to a pain clinic if your primary will not prescribe it. Tenseness ramps up fibromyalgia....I repeat, tenseness ramps up fibromyalgia. Eat a lot of protein, steer clear from the fast food stuff, go to bed earlier at night, stay away from as much negativity as you can, like the news, social media negativity, etc., I hope some of this helps. Praying for you.

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GREAT information here about fibromyalgia folks…. Do’s and don’t do to get us through!! Thank you!!

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1 reply
covidstinks2023 | @covidstinks2023 | Jul 15, 2023
In reply to @judyingenes "GREAT information here about fibromyalgia folks…. Do’s and don’t do to get us through!! Thank you!!" + (show)
@judyingenes

GREAT information here about fibromyalgia folks…. Do’s and don’t do to get us through!! Thank you!!

Jump to this post

Honored sweet lady. Us Fibro girls have to stick together! Blessings....

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ripley | @ripley | Jul 15, 2023

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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1 reply
toony | @toony | Jul 15, 2023

Exactly .. I have major insomnia for years I go weeks without sleep.. I hurt so bad.. and yes 500 a class dont help my stress level.. and no one can manage your life when its about money etc.. im sorry unless they pay my bills I will be less stressed.

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debkl | @debkl | Jul 15, 2023

Sounds like they've jumped on the biopsychosocial model of pain mgt bandwagon, which has become quite trendy. The problem is ...they don't understand how to put it to good use. It's even worse that many docs think fibromyalgia is a psych problem.

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