uh, hi my name is Jen, and I'm here to learn a bit about fibromyalgia. I have not been diagnosed, but have felt that I have something going on for many years now with each random symptom being blown off as all in my head, and maybe it is. I have been researching a bit to see what I could find that could give me answers and I came across this disease. I'm sure any responses I get will tell me to go to a dr and I will I'm just tired of being looked at like a hypochondriac,so ... here I am first. Many of my weirdness' have been around off and on since I was a teenager, I am now 32. I had random sporatic vomiting and nausea (luckily that is not as common now), depression, numbness,tingling, and clenching of my hands and arms, staring into space,bumping into things. Now I have most of these plus :fatigue,,headaches,muscle twitching in hands and arms,random pains in different places that range from achy to burning to bee sting like, I have stiffness, and sensory overload,itchy ears, ringing in ears,lack of concentration, unrefreshing sleep,mood swings, irritability,losing train of thought, using wrong words, decreased libido,back and forth diarrhea and constipation.... oi vey just some... and I know so many of these random and sporatic symptoms could be anything...I just don't know, I'm tired of feeling bad or weird...tired of being depressed, and tired of being tired
That is A lot to have going on... You are correct you need to see a Dr... but the right kind of Dr. I would suggest 2. A Rheumatologist and a Neurologist... You have to start somewhere... I do hope you find a diagnoses because then you can begin to have a treatment plan. Please make an appointment and keep us informed on your progress...
Huggs, Belinda
hi jen. i am just passing by right now cause my husband is waiting for me . I just wanted to say hi to you and hope to see you soon either here in discussions or on the chat. i am in and out as i am home most of the time and i always look at the discussions and pop in to the chat room. sending HUGGGGGGGGGGGSSSS to you
suzie
Hey Jen
Do you have migraine's and do have what feels like joint pain ,stiff toes etc.I would see a family doc and get a recommendation from him as to which specialist to see first..Fibro is such a long drawn out diagnosis that i would make sure it not a nurological problem first..Gods speed,wayne
I do not get migraines anymore, but I do have stiffness around my body, a lot in my back area, hands and such, no toe problems. I'm hoping to find a PCP that's an internist. I have been to a neurologist in the past few years, but he didn't find anything wrong, he told me basically that it was all in my head and I just have crazy stuff that happens with my body.
Thank you all very much for listening and helping
I actually don't have a PCP right now, working on it though. As for the neurologist, he did an MRI in 2008 because of my tingling, numbness, and chronic vomiting. He found a pituitary adenoma and sent me to an endocrinologist. By that time I had begun lactating, but had to wait 2 months to get an appointment and in those 2 months I stopped lactating and became pregnant so the endo Dr couldn't be concerened with hormone levels at that time. I have had several MRIs since then and the drs go back and forth on whether its really an adenoma or just how my pituitary gland is shaped...all I do know for sure about that is 1. That's all that came back abnormal 2. Whatever it is it is still the same size and 3. I'm not having any hormone problems that I'm aware of. Thanks for the info on your condition. I will add that to my research... I just want to know what's going on with my body
Jen, First make sure you keep a journal of your symptoms each day. Write down your questions and concerns. Call a rheumatologist and make an appointment ASAP. Since you have already been to a Neurologist Go to someone different. Be persistent and insistent with your health care. You know your body and you know something is not right. Take all your medical info and tests to where ever you go and make sure you make it clear to them you want tests done. Straight up tell them they can keep their narcotics, you want answers not pills. Refuse to take any prescriptions without a diagnoses as to why you are taking them. You should at that point have their undivided attention.
When making an appointment you should first do your homework on the Dr. Make sure this Dr. is Fibro. friendly. You have to start somewhere so insist on being checked for Fibro. and if they do not do the tender point check... you need to find another Dr. It took me 2 years going from one Dr. to another until I finally got mad and was bound and determined to know what was wrong with me... no more being brushed off and left hanging with no reason for my pain. I was pissed and on a mission. I went to an Ortho, then a GP...then another Ortho, another GP and finally a rheumatologist... Take control!!!
Huggs, Belinda
Well I would definitely recommend seeing a doctor, specifically a rheumatologist. A lot of your symptoms honestly (to me) sound conducive with fibromyalgia - however I certainly can't guarantee that's what it is.
Sometimes the issue with this disease is that the symptoms are so vague, it is hard to find one thing that directly screams fibromyalgia. I started feeling my worst during my early teen years, constant migraines, aches, pains, fatigue, fog, and I never slept. I was diagnosed officially with fibromyalgia at 18 when I went to see my rheumatologist, but it was a lot of guessing and uncertainty until that point. I suppose what I'm trying to say is that while we may be scared to get an answer about the war that is going on under our own skin, it is also crucial to taking the first steps in knowing how to manage that pain. I highly recommend looking up rheumatologists (good ones) in your area and making an appointment.
Please let us know what happens and feel free to post updates, whatever your feeling, etc!
Blessings and prayers