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Living with Fibromyalgia: Introduce yourself & meet others
Welcome to the Fibromyalgia Support Group on Mayo Clinic Connect.
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This is a welcoming forum where you can meet people who know first-hand about living with fibromyalgia. Together we can learn from each other and share stories about challenges and coping strategies, setbacks and the things that help.
Find your comfy spot, settle in and introduce yourself. What is your experience living with fibromyalgia (i.e., treatment, symptom management, coping strategies, etc.)? Got a question, tip or story to share?
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@SusanEllen66
looking up these terms... I think that's what they think is going on with me.. I'm heading to neurology for more tests with pin/needles feelings, color changes in feet/hands (raynards) and then back to cardio for the vessel stuff. I was tested in cardio before and have "narrow" veins, blood flow to my feet/limbs. 🙁
@hendriksgal I hope you’re given the correct diagnosis and get the help you need.
Keep is informed…
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2 ReactionsHi there, I am interested in following threads about people like myself who have had debilitating symptoms for months, but who still have not gotten a concrete diagnosis. And tips on how to get a concert diagnosis. I seem to currently be ping-ponging back and forth between a rheumatologist and my PCP. Thank you!
Be patient. Fibromyalgia is a syndrome diagnosed by process of elimination, because it mimics many other things. It took me a year, and a half dozen specialists to figure it out. Rheumatologist is the best specialist to diagnose it. Many people are misdiagnosed, so you have to hang in there. Since they don’t know the cause, they mostly treat symptoms. But the classic, most common reason for its trigger is TRAUMA. Either mental shock, or a physical trauma. Examples include being in a car accident, diagnosed with cancer, or in my case, my Dad committing suicide. People can be genetically prone to it as well. (My Mom had it, but it was undiagnosed.) Docs suspect it’s a central nervous system disorder, which is why Lyrica, Gabapentin, and Cymbalta help. HOWEVER, those are dangerous psychotropic drugs that REWIRE your brain and have severe side effects like memory loss if taken long-term. They also take 6 months to a YEAR to properly get off or else you can get brain damage. Doctors don’t know and don’t titrate carefully off them. Each person is different with varying symptoms. Some have IBS, some don’t. Some get migraines, others don’t. Pain can travel to different parts of body. See why it’s so tricky? You have to try different combinations of meds. I take Tramadol and Prozac. Gentle exercise like yoga or Tai Chi are immensely helpful, as is counseling for depression. Don’t give up. Hugs 🥰 to you!
Hang in there, I have had debilitating symptoms for years and had all the tests under the sun and it took 5 years to diagnose me with fibromyalgia last September. Never give up, keep going back to your GP and mention you think it could be fibromyalgia. Don't forget though you might be diagnosed with other things as they found I had GORD and I was miss diagnosed with coeliac at one point.
Good luck with your journey.x
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1 Reaction@JustinMcClanahan
Hi my name is Teresa not only do I have fibromyalgia I also have advanced MS and pots. It's hell to live with all of this. I do take medication. I'm on a heavy dose of pain medication. I do take baclofen for you. Must relax. I think I'm gonna have to have them up the dose. I'm still having spasms the spasms that are in your body. Those mini spasms but baclofen does work. it also helps with Phibro so does Lyrica don't take gabapentin that stuffed is does not help at all. Just makes you gain a bunch of weight lyrical help somewhat but still if you've got MS or Phibro or any of that stuff you're gonna get really constipated you're gonna have IBS or something with your intestinal track any of that you're also probably really gonna get arthritis. I'm sorry I'm a big bummer but it's not fun. None of it's fun. Hit me up if you want to know
@meco Have you tried seeing doctors at a research hospital? I find that makes the biggest difference. My pain has always been misdiagnosed because conventional doctors have to fit your symptoms in a box. We are outliers and a lot of the science has been developed the last 25-30 years. I wasn’t properly diagnosed until I got in mayo (at 40). It’s taking a few years and hasn’t been easy but I’m feeling so much better now that I’m properly diagnosed and all my symptoms can now be explained and treated. The struggle is real but we can get through it. Good luck!!
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1 Reaction@hendriksgal Thank you for sharing. Your story isn't exactly like mine but hits such similarities. I didn't, sadly, get answers from Mayo - still working on things there, however, doing my own research ( because we all with Fibro or other undetermined problems become our own advocate),
I recently found LDN and after a month, my PCP agreed and I have mine coming in the mail! I will be titrating up from .5mg every 7 days until find a dose that works - hopefully! The crashes are the hardest. I have lost so much of my life, even a tiny bit of improvement of energy would be a gift!!
Bless you and pray you continue to find those 'things' that help.
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