BellaOnline Forums Health and Fitness Fibromyalgia & Chronic Fatigue Syndrome How did you come to your diagnosis?

Maryan,

I haven't given up that search. I still think our best defense is advocacy and awareness.

Dominie Bush just started a list of "Good Doctors/Bad Doctors" which has information on what some doctors have told patients...

http://www.fms-help.com/doctors.htm

Perhaps -- we could start a top docs directory at some point. If you have a great doctor, share his or her name with me. I'll be happy to start working on a database.

That way we can all work towards finding and seeing the doctors that are most able to help us...

Of course, we all have a responsibility in the doctor/patient relationship. Here's an article entitled - how to talk to your doc
http://www.bellaonline.com/articles/art23127.asp

When I wrote my previous reply, Maryan, I was just coming off the whole "House" drama and the fact that my sister was told by her doctor that the fact that she has fibro has nothing to do with the fact that I have it. It's inconceivable. Plus, a friend told me that she was told by doctors that, because she is African American, she can't have the syndrome. So, yes, I was a little down on doctors in general. It happens. I'm human.

Hi

I have just joined this group, I have had FMS most of my life, I thought it was normal to be in pain for many years. i had a bad fall as a toddler and hit my back on a car engine that was at the bottom of the stairs, and since then I have had pain, I think I was around 3 at the time of the accident. My nan said I would suffer when I was older with back problems she wasnt wrong. I have been in a wheelchair for just over three years now because the pain go to bad for my too cope anymore. I have found that I can achieve a lot more by using it.

The other problem I had was that i had a small hole at start of the tail bone and I use to get infectons in it, which would take ages to get rid of. The last infection was when I was 15 and it took months to heal. I have been told be three different specializt that all my pain is in the mind, I know this is typical for people who have FMS. I have an appointment on 17 February 2005 to see a Rheumaticologist at my local hospital, where I am hoping that they will do the tender point test and also confirm that I have Sjogrens Syndrome. I do get very tired very quickly. I have to at times to stay a wake, especailly when I was at school last year, at times I would be trying to stay awake in a lesson and concenrate on what is being said. I have also got dyslexia.

Dee

Ten years ago I'd lost everything - marriage, my own freelance business leading to bankrupcy, everything I owned. I headed for the hills to recover. I was a mess. I saw the doctor in the local town who diagnosed Anxiety and prescribed weekly counselling (with him of course) - implying it was all in my mind. After a consultation with a government doctor, to apply for a Disability Pension (Australia), it was refused - "there's nothing wrong with you." Seven years later back in the city I could hardly move, spending my days on a bed or lying on the floor - I couldn't even sit upright in a chair - a new doctor in town, a Natural Therapies practitioner and orthodox GP, a woman, diagnosed fibromyalgia and CFS and saved me. The struggle to survive for those 7 (20) years and the dismissal by numerous doctors as my imagination I believe made my condition and my life much worse.

PS. As well as fibromyalgia and CFS the final diagnosis included a history of glandular fever, acute anemia, severe digestive problems and food intolerances. Elaine.

The more I hear stories like this, the sadder I feel. I am glad that you are here to share and we can learn a lot from each other.

Dee, keep working towards finding out what's wrong with you.

Elaine,I'd love to hear more about what your treatment has been like.

Hello I'm a newbie! It took about 4 years to be diagnosed with FMS at the age of 21. I heard it all had every single test done. I remember a doctor explaining away my extreme back pain as just my back being strained , what a joke. I took a few more years of misdiagnosis to finally find I had FMS.

I too have had FMS for close to twenty five years, though only an "official" diagnosis for eight. I was diagnosed before it was so commonly heard of. Though the oddest diagnosis I ever received was at the Mayo Clinic when I was still in Junior High (typically it doesn't strike people so young, but then we all know this disease is anything but typical!)-anyway, since we all know the cold causes terrible flares, the doctor there diagnosed me with a "cold allergy", that I was literally allergic to the cold! Not only did I have pain, but I was fainting up to ten times a day, my blood pressure was as low as 70/50, I was hospitalized on average 4 to 6 weeks a year with flu like symptoms and severe dehydration, and had run a low grade fever for over a year, and had numbness and tingling in my face! Finally I found an internal medicine specialist who, based on all of my normal test results and the locations of my pain, decided it was most likely FMS. Now that I've been taking meds, I have had a great deal of improvement until recently. My only concern is that a recent muscle damage test was at the absolute high end of normal...what next?

Kristi,

Muscle damage is not surprising with FMS. If you think of the normal human body as going through normal muscle tears day in and day out - the only thing that repairs them consistently is sleep - good, old-fashioned refreshing sleep. The fact that you have a lot of muscle damage is NOT surprising. It's consistent with your diagnosis of FMS.

Are you on any sort of muscle relaxer or sleep aid?

Deanna,
Yes I am on Flexeril. I also take Ultracet and Effexor. I was on Elavil prior to the Flexeril, but it gave me terrible hallucinations.

I know that muscle damage goes hand in hand, due the lack of deep sleep that releases the chemical somatomedin-C which is responsible for muscle repair. My muscle damage levels though are getting high enough to consider further testing for the development of muscular dystrophy or something similar.

Hi guys, i hope you don't mind that i post. i dont have FMS or CFS, but i do have Rheumatoid arthritis. was just recently diagnosed. i've read quite a few entries here and i'm amazed at how closely our "diseases" mirror one another. I too have been a "stressed out" person for most of my life, and never really understood what your nerves and stress can do to a body. i'd always had little aches and pains, for years. two months ago, the day before valentines day, my hubby of 20 years and i separated. the next morning after he moved out, i couldn't get out of bed from excruciating pain in my shoulders and feet. it was nearly an hour before i could walk without limping. the next day it was my hips, then the knees, then the shoulders again. after about three weeks of semingly non-stop pain, i went to my g.p.. he said "sounds like RA" and sent me to a specialist. where i am today: i'm now on remicade infusions every two weeks, backed up with methotrexate. i was quite aprehensive about the remicade after all the bad stuff i'd read on the net. i've already had one treatment, and i'm now going for a week at a stretch without pain. and very little side effects. the methotrexate makes me a bit gasy, and i get a little dry mouth for a couple of days after i take my once weekly dose, other than that i'm doing great with it. i feel so much better these days. almost "normal"...lol...whatever that is. well, anyways, i just wanted to stop in and say hi. i've been lurking for awhile, usually you'll find me in the crochet forum. yes, i crochet AND i have RA <img src="/images/graemlins/smile.gif" alt="" /> i refuse to let it get the best me.