Learn how to use Mayo Clinic Connect
Request an Appointment
hello everyone i’m new at this but was wanting to talk to other people about fibromyalgia and the symptoms that other people have
Interested in more discussions like this? Go to the Chronic Pain group.
Hi. I just joined, too. This could prove to be a great network for everyone.
Hi, I am new here too. I was officially diagnosed with fibromyalgia in 2001, but it took me years to be diagnosed. I also have chronic fatigue syndrome. I’ve done a great deal of research and if anyone wants to talk about FM or CFS Im ready.
Jump to this post
I’m open to talk with you about fibromyalgia and chronic fatigue syndrome if you want. I was diagnosed in 2008, after months of suffering. I think I began with it in about 2005, but a bout of mono pushed me over the top with full blown symptoms. It’s been a long journey, but I do think I’ve come a long way. The first decision that I made along the way that made a huge difference was that I would not be defined by my diagnoses; they are only a small part of who I am. How are you coping?
I have had fibro for 10 yrs. It is cyclic and when I get into a crisis it can last weeks. I get pain esp in my upper neck area which then causes severe headache for weeks. Extreme fatigue. Ensues. I was diagnosed in the fibro. Clinic in Boston mass. The doctor I saw wrote one of the first books about fibrous. When they thought it was a trashcan diagnosis. I do not want to make this about me so if you have any questions please let me know I truly have. Been through. All with fibrous. Jodi
Honestly, every time I get a pain I have to wonder if it’ll stick with me, or just pass for good. I have fibro, chronic intercostal neuralgia, & chronic fatigue. I try to focus on just one day at a time.
Did you recently get diagnosed?
Dear Chelle, I am yet another fibro patient, aged 58, diagnosed two + years ago. There are local pain discussion groups but nothing specifically fibro, and it’s lonely when others “don’t get it.” Apart from sometimes feeling so VERY exhausted, even my loving family members do not seem to understand. One can’t wear a sign but some days I need one with the message, “I hurt and am tired.” Try to identify one or two close friends who will agree to reach out when you signal.
They tell me that getting in a good rem sleep helps. Is anyone on any med that helps?
You’re right about the message you’d like to wear some days! I think we should have t-shirts made up with that simple message, “I hurt and am tired today”. Seriously! My family is wonderful but no one truly understands unless they’ve experienced this; it’s called sympathy v/s empathy. That’s why it IS so important to have a few close friends who reach out when you signal. The good news is that my close contacts and I laugh together much more than we talk about symptoms. Laughter is powerful.
Hi jodi, I had a sleep study & of course I got plenty of rem sleep that nite. Over the past 15 years I have tried a lot of meds for sleep xanax, vaium, lunesta, ambien… they help sometimes. I also have some other medical issues. I understand the cycle. For the past year & a half I have been having 1 flare up after another. It starts with pain so bad I can’t sleep or get out of bed for 5-7 days then the pain diminishes & I sleep 48-72 hours. I have 1 or 2 days I feel well enough to get out of the house, I run a few errands, go out for dinner and then the pain starts & the cycle repeats. I don’t know if its the FM, CFS, a combo of both or the recent diagnosis of seronegative spondloarthropy/ankylosing spondyitis. I also have a fusion @ C5-6, my disc ruptured in 1997 & it compressed my spinal cord. I have permanent nerve damage in my legs. I also have neck pain & frequent migraines. I didn’t intend to make this about me, but I thought that I should clarify that I have other issues contributing to my pain. It’s very confusing for me, I am never sure what is actually causing these cycles. I do know that I have been to 2 new Drs & they are still trying different meds for the AS. I think perhaps the constant med changes are triggering the pain/cycles. I was told by a FM specialist that having FM makes me like the princess in the childrens story who could feel the pea under the 7 mattresses she slept on. I think when you have FM your body is hypersensitive & little stresses whether they are physical or emotional can affect us greaty.
Mklr2009, I am not coping well. I am hanging by a thread. I’ve been stuck in bed almost 2 yrs. I had a bad respiratory virus that pushed me over the edge in 2010, before that I was pretty good if I paced myself. I try and I fight and I hope that I can get this under control. I agree with your decision not to let it define you. In the last 2 years I have had some other medical issues develop & these conditions and the meds the Drs keep trying are causing me to constantly repeat the cycle of pain/fatigue. I get maybe 3 or 4 days a month I can leave the house. I’ve had FM for 10+ years, I was able to keep it in check until the virus.
Kjsddasa thanks for joining our exclusive club…lol. Fibromyalgia isn’t an exclusive club, it affects millions of peoples lives. When I was diagnosed in 2001 it wasn’t a well known syndrome and now we actually have FDA approved drugs specifically for fibromyalgia. A lot has changed in 10 years. I hope in another 10 years they will find the cause & a cure
Take care of yourself
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In