severe migraines and body pain with fibromyalgia

Posted by milenawalker @milenawalker, May 9 9:56am

hi there! my names milena and I was just diagnosed with central sensitization including POTS, fibromyalgia, chronic IbS, fatigue, abdominal pain and a couple others. i have been having migraines every day since jan 27 2023. i know the date by heart because that’s when my world got flipped upside down. i’m constantly in pain and i’ve seen numerous doctors and specialist with no answers until i went to mayo clinic. i’m glad i have an answer but i was hoping the fix would be quick and unfortunately that’s not the case. i try to move as much as i can but sometimes my head and body just can’t keep up. it’s frustrating and makes me lose hope. does anyone else suffer from constant headaches or pain?? i need to find ways to distract myself or find medicines that work. any recommendations?

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Did the doctors at the Mayo diagnose you? My fibro pain flares were triggered by Covid a couple years ago and since then I've had widespread body pain that travels around my body, along with severe insomnia. Before that I was having daily headaches, with pain at my left temple only, that came in flares lasting a couple months, and then they'd go away for a couple months. I saw many doctors and got several diagnosis, but I now think that may have been part of the fibromyalgia. At least Tylenol helped relieve the headaches. Now that I have the body pain, I no longer have the headaches and no OTC pain meds help. I don't take any prescription meds for fibro, except for a muscle relaxer on nights when I think I need it. It doesn't help that much so I don't take it often. Like you, I try to move as much as possible. I also have IBS and microscopic colitis but fortunately that doesn't bother me too much. My life has been flipped upside down too. There are so many activities I can no longer do, such as long walks, gardening, and socializing.

I see a functional medicine DNP who started me on lots of supplements, but they don't help much. I also tried a gluten free diet for 3 months and didn't notice any improvement.

Do you recommend trying to get an appointment at the Mayo Clinic? What kind of help did they offer?

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@ripley

Did the doctors at the Mayo diagnose you? My fibro pain flares were triggered by Covid a couple years ago and since then I've had widespread body pain that travels around my body, along with severe insomnia. Before that I was having daily headaches, with pain at my left temple only, that came in flares lasting a couple months, and then they'd go away for a couple months. I saw many doctors and got several diagnosis, but I now think that may have been part of the fibromyalgia. At least Tylenol helped relieve the headaches. Now that I have the body pain, I no longer have the headaches and no OTC pain meds help. I don't take any prescription meds for fibro, except for a muscle relaxer on nights when I think I need it. It doesn't help that much so I don't take it often. Like you, I try to move as much as possible. I also have IBS and microscopic colitis but fortunately that doesn't bother me too much. My life has been flipped upside down too. There are so many activities I can no longer do, such as long walks, gardening, and socializing.

I see a functional medicine DNP who started me on lots of supplements, but they don't help much. I also tried a gluten free diet for 3 months and didn't notice any improvement.

Do you recommend trying to get an appointment at the Mayo Clinic? What kind of help did they offer?

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yes i definitely recommend getting an appointment at mayo clinic. it was the best dr appointments i’ve had. they were prepared, thoughtful and genuinely wanted to help. i was thinking about starting gluten free, i saw someone said that it helped them so i figured i’d give it a try. i also can’t stay asleep at night, i started taking medical gummies and they help a lot but it’s still not great. let me know if you have any other questions!

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I have Fibromyalgia with Lupus. Lots of migraines and pain when diagnosed in 2002, but not as bad as they use to be. There are new migraine medications. I use them. Lots of water. Limit sugar. Matcha and green tea daily. Keep moving even if it is a 5 min walk. Stretch. Use physical therapy. Sending healing energy to you!❤️

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@milenawalker

thank you!!! i will try that!

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I have Lupus and Fibro along with Interstitial Cystitis and Osteoarthristis. I'm 72 years old and I've been at this since 1987 believe it or not. I'm always looking for answers and have tried many drugs and things. Stress is a crusher and as you age your body is not kind. I currently take Gabapentin along with my Lupus and arthritis meds. They help but honestly I deal a lot lately with degenerative disc disease in my back. Fibro pain is pretty much always there. I can tell you from experience that you have to manage yourself. Rest and stress relief and move. Over the years I have found that PT in a warm water therapy pool is the absolute best. You can usually find them at your YMCA's. You can go on-line and find easy exercises to do in the water and even water walking is so good for you. These pools are usually 90 degrees and feel amazing. My Rheumatologist recommended it to me years ago. I would give it a try for some pain relief. Some of your Y's even have arthritis classes that are helpful. Y's are fairly inexpensive and have a lot to offer.

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If ablel, I sometimes get relief from taking any anti-inflammatory regularly per instructions from whatever you're taking, every four six or eight hours for 48 hours straight. It doesn't always help, but sometimes. And sometimes is a big relief

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@milenawalker

yes i definitely recommend getting an appointment at mayo clinic. it was the best dr appointments i’ve had. they were prepared, thoughtful and genuinely wanted to help. i was thinking about starting gluten free, i saw someone said that it helped them so i figured i’d give it a try. i also can’t stay asleep at night, i started taking medical gummies and they help a lot but it’s still not great. let me know if you have any other questions!

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What did the Mayo Drs recommend to help with fibro pain and insomnia? Also, how did you go about getting an appointment? Did you request on yourself or through your Dr? Thanks.

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