Fibromyalgia: Anyone out there with the same diagnosis?
Hello! I was just diagnosed this Friday with Fibromyalgia. Is there anyone out there with the same condition. I am a 37 yr old female that was pretty active until I took a drastic decline with severe increases in pain in August. Initial blood tests were pointing towards lupus, but after a thorough exam---fibromyalgia it is. My rheumatologist started me on a 2 week trial of savella. Thanks so much for any insight you may have for me 🙂
Interested in more discussions like this? Go to the Fibromyalgia Support Group.
Am 68, diagnosed at 60 but had aching/fatigue attacks on & off since my late 30’s. On Lyrica & Prozac & take a lot of aleve. Tried gabapentin & now the Lyrica. Triggers are too much physical work, travel, stress, weather changes (esp wet/cold) . Elliptical (gentle) helps prevent aching & stiffness.
@zinniagal It seems fibromyalgia went through a phase of being the "mystery disease" that many doctors diagnosed, several years ago. Like you, I was given this term about when you were. I just get exhausted, and have some other health issues also.
What type of diet do you follow, to keep you feeling your best?
Ginger
I know nothing about this condition beyond hearsay. But I did one come upon an article by a physician urging the medical profession to reconsider severity and prevalence of Lyme disease. He suggested that a lot of what is called fibromyalgia might be undiagnosed Lyme. And Lyme could be carried by multiple hosts over a wider geographical distribution than recognized. I don't want to introduce a red herring into the thread, but maybe it's worth asking your doctor to test for it?
It’s interesting that you mention Lyme- because I had a mystery virus that put me in the hospital for 2 wks when I was in my 30’s that the doc hypothesized jump-started mine cause about a yr later is when I started having the fibro episodes. Long story short they thought I maybe had Lyme, rocky mtn spotted fever, lacrosse encephalitis, etc etc but doc at mayo landed on CMV which most people get & have mild flu like symptoms-they don’t know why some people get so very Ill with it. So I got checked for all those things & was a no.
Now docs are saying that it’s not unusual for a virus like I had to be some kind of trigger.
My diet is horrible- I love sugar & dairy & red meat. Also caffeine which I’m told to avoid. But caffeine is one of the things that keeps me going on the worst days.
@zinnizgal Ha Ha Ha! [smiling here!] When we don't feel good, it is all about eating to feel better, isn't it? I keep to one cup of coffee per day, but it is a big cup. Red meat and dairy, not so much because I also have to follow a renal diet for my kidneys.
Getting out in to fresh air, and even a simple walk, can do so much for our well-being. This time of year as Spring turns the corner, is the time to make the most of it. Plant some flowers, do some weeding, even sweeping u[p our mess can help us feel like we are accomplishing something. What will you do tomorrow?
Ginger
Hi everyone, I have had fibromyalgia for 9 years meaning diagnosed with it since 2013 probably had it since even before then. I also have IBS and osteoarthritis and neuropathy. I am currently on 300 mg of Lyrica, and it is divided into 3 100 mg doses daily. However since I have been on it since 2013 I am worried that it no longer works for me. The weather where I am doesn't help me either which makes things worse for me pain wise. I am hoping that something else may help more.
My neurologist gave me a prescription for flexaril (cyclobenzaprine) to take as needed, when my arms, legs or back just won’t stop hurting. I am on the same dosage with Lyrica. Since I also have MDD (major depressive disorder) and extreme anxiety, I also take Effexor Xr (225 mg/day—in 3 -75 mg capsules every morning), Wellbutrin 300 mg tablet), Xanax (4 mg in the middle of the day) and Trazadone for sleep. I’m sure I’ve had fibromyalgia all my life, as I think back. From the age of 10, I’ve had optic auras. They used to be followed by a migraine, but now I just get the aura. At 12, I stopped growing. But by 13, I kept having the feeling that my shins were made of shattered glass cutting through my muscles. I felt it more if I was very tired. It was pushed off as growing pains, but I wasn’t growing. I think I have IBS-C. I’m going to see my gastroenterologist at the end of June.
For extra pain relief, my neurologist told me 1-3 ibuprofen (advil) are fine. That would be 200-600mg. I see a neurologist for my fibromyalgia because I have so many other neurological problems. Weather bothers me terribly too. I live just outside Detroit, Michigan. This spring has been crazy with the weather! Oh, I also have chronic vertigo. As storms come & go, my head gets more or less spinny! Life is so much fun as we grow older!
I have Vulvodynia which I think is some type of neuropathy. I have been taking lyrica since the second week in February. I worked my way up to 75mg in the morning and 100mg at night. At first it appeared to help a little and now I already feel like it is no longer working. When I take it my head feels numb and I am a little dizzy so I don’t want to increase the dose. At first when I felt like it was working I put up with the dizziness and numb head. I have had this pain for 4 years. Has anyone else have Vulvodynia?
Hi @francesmharris123, There are a couple of other discussions on Vulvodynia that might be helpful:
-- No Classes or Events for PFPT, Vulvodynia, Chronic Pelvic Pain: https://connect.mayoclinic.org/discussion/no-classes-or-events-for-pfpt-vulvodynia-chronic-pelvic-pain/
-- vulvodynia: https://connect.mayoclinic.org/discussion/vulvodynia/