Fibro needs an update!

My doctors listen to me but I research the doctor before ever going to them.  I make sure they treat fibromyalgia patients.  If they do, they know we are all different ages.  We had a mod here that has had fibro since childhood and we get moms on here representing their child, too.  So if your doctor isn't listening, get a new one.  YOU are hiring him/her.  YOU are paying them for their services.  If you are not getting good service, leave.  You would do that in a restaurant, wouldn't you?  So take a little more charge over who will be treating you for illnesses.  It really pays off.

 

I agree that more public knowledge needs to be had with fibro.  It's getting better, though.  They are really researching this illness now so that's very good.

 

Fibro isn't an inflammatory illness but I have been using ibuprofen for it.  But I recently found out some of my back pain was from an arthritic condition....but it mimics fibro symptoms!  It wasn't until it became progressive that I headed to a rheumatologist.  I'm now a whole lot better. 

 

Sherrine

Oh trust me it's not your age! I'm 45 and have run into the same problems. I was diagnosed with Fibro in my late 30s. I was lucky then and had an awesome doctor. Not so much now. The problem is the lack of knowledge doctors have about Fibro.

Sherrine you have a good point of researching doctors before going to them. i know from now on that's what I'll be doing.

Yes, and how about the, "Oh, do you still have that? Maybe you should try exercise" people - they're so fun, aren't they? 

Debbie

I can totally relate. The doctor that I had for many years was not a believer in fibro, nor was his nurse (who seemed to control him). I had long suspected that I had fibro, and had approached him about it several times. Each time, I would get the brush off, or he would send me for some type of silly test and would come up with a result that could easily be attributed to something else. He was basically treating the symptom and not the cause. Since I am an in-home childcare provider, he was also very good about writing off my symptoms as being stress-related. He would say, "Now, I don't suppose that there is any stress involved in your work, is there?" in a rather sarcastic tone of voice.

The absolute last straw was 3 years ago when I was having a flare, and slept almost nonstop for 3 days. I contacted his office and explained the situation. The nurse called back at least 24 hours later saying that the doctor had said that people with fibro should get at least 7 hours of sleep a night (I retorted that this was not a problem, since all I could do was sleep), and exercise for at least 30 minutes a day! Definately not a compassionate answer, and not even remotely useful. I was reduced to tears at that point.

My husband knew the doctor that was the head of the group that my doctor was a part of. He made him aware of this. This doctor phoned my MD's office, and came back saying that the nurse had indicated that there was no record of my ever telling them about having fibro-related symptoms! He further stated that they wanted me to contact them so that they could discuss this situation further. What liars!

When I went for this appointment, the first thing that the nurse did was come in and read off a long list of medications, asking if I was still taking each of them. This list contained nearly every medication that had ever been prescribed to me over the many years that he had a patient of this doctors. The hairs on the back of my neck began to stand up. There were even antibiotics that had been prescribed for sinus infections that, of course, had been discontinued after a week to ten days. Obviously, they had not been keeping accurate records. When the doctor came in, I immediately told him that we both knew that there had been conversations in the past concerning my having fibromyalgia. He admitted that he remembered these. He finally did the pressure points test, and discovered that many spots were quite tender. He seemed stunned. He had some blood drawn to test for D3 deficiency, which showed that I was very low. He also discovered that I was severely anemic. He seemed very compassionate (and worried) at this point. He stated that he believed that I had fibro. I asked for a referral to the pain clinic at the hospital. He began hedging, saying that he could treat the fibro himself. I told him that I felt that I needed a medication such as Lyrica for the pain, and some physical therapy. He replied that he could prescribe Lyrica, and do a referral for physical therapy. I insisted, and he finally agreed. To this day, I believe that he did not want another doctor viewing the state of his records. He went into the hallway, and asked the nurse to do the referral, stating that the diagnosis was fibro. Apparently, she had rolled her eyes or said something under her breath, as he stated, "well, there were a number of tender spots on the pressure points test." He also prescribed Trazodone during this appointment, which helped a great deal with my sleep. Feeling more rested, it was easier to manage my pain.

The doctor at the pain clinic was like a breath of fresh air. He stated that if i had noticed immediate improvement with taking the trazodone that it was Fibro. He immediately ordered physical therapy twice weekly. He did seem appalled that it had taken so long for me to be diagnosed, given my symptoms. He asked if there had been x-rays taken of my back, and seemed surprised that this had not been done. He ordered that these be done the same day. He was shaking his head as he reviewed my records. He said little, but his non-verbals said it all. I left with a lyrica prescription.

The pain clinic at the hospital has since closed, and the doctor has moved out of town. Just a few months after my appointment with the disorganized MD, he announced that he would also be leaving town later that year. We immediatly transferred to another doctor within the same practice who we knew. This had not been possible prior to this due to the size of the other doctors caseloads. She prescribes all of my medications, and listens when I describe my symptoms. I get referrals for tests or to see specialists as needed. The physical therapists showed me stretching exercises that relieve my symptoms. Water therapy was also a big part of my PT, and I still try to attend water exercises at least 2-3 times per week. This helps a great deal in managing my pain.