FRUSTRATED!!!

Oh, I'm so sorry about that. Our medical system just wasn't made to cope with this condition. People have trouble grasping the concept of what we go through every day.

Why don't you get printouts of the results of all the tests that the doctor did on you, to show to this new doctor? Then she will know that it you have had those tests in the recent past and that it is unnecessary to run them again.

Good idea about the medication - I hope it doesn't make it too hard to cope with the next 6-8 weeks.

I will pray for you :)

It took years, for me to get a fibro dx and a number of rheumies. It was after, my diagnosis with autoimmune connective tissue diseases that they realized I also had fibro. Fibro is not an easy thing to diagnose. There are too many other conditions that share many of the same symptoms.

So many of us have more than just fibro going on and that does make it difficult to get proper treatment.
In the end, my rheumy sent me to a teaching hospital to get a confirmation of his diagnosis. The doc there confirmed my rheumy's dx and said I had an overlap of fibro.

Hang in there...the important thing is getting a correct dx and proper treatment. Wishing you good pain relief!

Hugs, Robin

Myself 09 said...
Yes, it does take a long time to figure things out. We build a doctor's visit up into a magic bullet, and it's not. Try to look at this as being a step forward to their figuring out what is wrong with you! It takes them time to do a good job, and even then sometimes they are wrong. From their perspective, this is not as easy as we would like it to be. Remember: the internet is no substitute for a real doctor's opinion.

Thank you so much for this statement. It really put things into perspective for me. I will pray for patience for myself as I endure this process. I am thankful that she wants to be thorough. I think my frustration stems from the relief that I felt when I was able to clearly identify my symptoms with that of Fibromyalgia. This gave me the confidence to not feel ashamed or like a "HEADCASE" since  for years I have been told that it was all in my head.

I really do not understand why you are refusing the medication. Is it that you feel you do not need it to help? Are you concerned about the side effects?

My thoughts on not taking the medication are the following:  I am concerned that if I take the medication and it relieves my symptoms; I will be unable to describe my symptoms and may go without diagnosis at all. I do feel as though I need it, but my fear is that ability to accurately describe triggers, symptoms and  such will be diminished.

It took me 6 months to be diagnosed, and that was fast. You are in the gathering of facts phase now.

Thanks again for taking time out to help a girl in distress.. I had another night of insomnia... but It did allow me to think. I am a chrisitan and truly believe that I'm on my way to figuring out my condition; therefore, I will muster up some patience and faith. 

Girly 

 

This condition can be so frustrating, can't it? We seem to have 'ok' days, 'bad' days, and some days seem almost unbearable. I'm struggling today because I'm tired out and feel like there's so much I wanted to accomplish. SIGH... But that seems to be the nature of the beast, when it comes to fibro. We have to pace ourselves and somehow find lots of patience while we wade through the days, whether good or bad.

Just want to say: I hear you, and I know others do, too. Hang in there and keep chatting. You'll make it. God bless!  Praying for you, too.

I have been reading an interesting book, How Doctors Think, by Dr. Jerome Groopman. As a patient, it was eye-opening. Remember, symptoms are only a very small part of the diagnosis. There are tests, which will be different on different days, there is the doctor's evaluation of the patient and their ability to describe their symptoms, and then there is the matching of the evidence within a range of illnesses. We have to trust doctors for their expert opinions, honed by study and years in practice. A proper diagnosis of any kind takes time, and evidence. Sometimes, just a misunderstanding of a symptom will lead them down the wrong path.

One of the problems with FMS is a lack of evidence, an absence of a diagnostic tool or test. I always go to any doctor with a list of symptoms and concerns, another list of current medications and supplements, and a list of other doctors I see with their findings. I carry all medical paperwork with me, in an accordion folder. At this point, I have FMS (and definitely NOT lupus), Ulcerative Colitis, Crohns disease, enteropathic arthritis connected to Crohns, likely Ankolysing spondilytis, and depression. I see four different types of doctors.

You should take the medicine prescribed, rather than wait. If your symptoms decrease with medication, isn't that a good thing? Honestly, this condition can be managed to a certain extent, but I do not think it is going away anytime soon. One of the things I have learned is that living with FMS is really about learning management and coping mechanisms, and keeping yourself both mentally and physically as healthy as possible.

We all have mini-breakdowns, sometimes. Going through life is hard, even harder with a chronic condition of any kind. This particular one is for the long haul.

Hi

Good advice already given.. just wanted to add..

re: med making you feel better & forgetting symptoms..
No matter what I have taken that worked a bit, my symptoms were only lessened somewhat but never to the point I feel 'cured' ..
If only !!
I do not think you will not be able to describe your symptoms..
If others on here disagree please speak up..

Girly,

I'm so glad to hear it! Do keep us posted - -

Debbie

Girly,
Welcome! Question - are you still active duty? And where are you located? I just retired after 20 yrs active duty Air Force in the DC area. In my last year of service I started having symptoms and spent 6 months bouncing between doctors (GI specilists, PCM, and Rheumy) and feeling like a lab rat/pincushion.

They ran just about every test & scan conceivable. Not a blip or even slightly ab-normal result. Every test was negative. Started mainly GI tract since that's how my symptoms started, but once the all over pain started up my PCM sent me to the rheumy.

On my first visit to the rheumy we talked about my symptoms and got around to the all over pain, feel like I'd been run over by a truck. Then he started poking and proding all over - I had no idea what he was doing but it turned out to be all the tender spots. Of course they all hurt. He told me I had "Chronic widespread pain syndrom" and he wanted to run a whole bunch more blood tests (mostly repeats, but some new) and narrow down the cause of all the pain.

On my second visit we went over all the results and he explained that he was ruling out any possible cause other than Fibro. That a Fibro diagnosis was reserved for when there's no other diagnosable cause of the pain.

Anyway, long story short, I tell you all this to easy your fears that they are just running you around in circles. The docs are likely being thorough and making sure that there's nothing else treatable that is the cause of all your pain.

And yes, the pain is always there, but it waxes and wanes and moves around and changes character. Sometimes it's hips and knees, sometime shoulders, back, neck. Almost always abdominal. And it varies between sharp stabbing, dull achey, burning, etc. But it's always there. And mine's not under good control yet. My average "good" day is a 6, with spike to 9 or 10.

Just hang in there Girly. You'll get there and figure it out eventually. We're all going thru the same thing. Different details and situations, but same overall problem. We'd love to hear more from you and help in any way we can, if only to let you vent. :)

Oh, and the pain journal is a good idea. I looked for one and kinda liked the one at theacpa.org, but it's shortfall is it doesn't give you a place to enter any comments to start corellating what's going on in your life with the symptoms you experience. If you want, I took the info that logs and put it into excel and added columns for comments, etc. I can send that to you or post it here if you'd like. Though I'll need some guidance on how to actually post a file.

Have a blessed day!
Mari

Hi Mari,

Thank you for taking the time to respond. I am no longer on active duty. I separated from service after 9 years of active duty service. I currently live in CA and have been going to the VA as well as my private insurance provider. I would love to have a copy of your pain journal. I'm really confused about what is going on with my body. I actually have been having symptoms; unexplained pains in my muscles, joints all over since prior to my discharge in '99. I was told that sometimes the body has aches and pains that we can't explain. I am glad that the medication is actually lessening the pain, but what I hope will come one day soon is a cause.

Thanks,

Girly

Girly,
I can't figure out how to post the file, but if you'll e-mail me, I'll gladly send it to you. I think I figured out how to update my profile so the little mail icon should bring up my email address.

Have a blessed day!
Mari