Leaving the Dr's office in tears.

Last week I had a sleep study. Of course, the tech has to forward all the results to the doctors to give you the final results, but she saw no espisides of apnea, and only a few of hypopnea when they made me sleep on my back. Left to my own devices, I don't sleep on my back. I have the appointment with the sleep specialist guy next week or the week after.

So today when I'm in seing my PCP for a fibro recheck, he tells me that I have full blown sleep apnea with a drop in oxygem saturation, and he's sure the sleep doctor is going to put me on a cpap. So, according to him, that will solve all the problems I've been having with fatigue. Now I'll have to see what the sleep doctor says, but the tech seemed pretty experienced, and she said that they'd put me on the cpap during the study if I was having apnea (and I wasn't) and that my oxygen saturation remained high the whole time. I'm almost positive he said that to get out of trying to make any useful suggestions about my fatigue today

Then he's all set to get up and leave, when I tell him I've been having a lot of pain, and I want to talk about it. He asks where, and I tell him mostly in my lower back/hip and in my hands. My hands are the worst right now, I couldn't even tie my shoes this morning they hurt so bad. I had to put on a pair of slip-ons even though they really don't have enough support, which just makes the pain in my back and legs worse. Anyhow, he tells me that fibro doesn't make people's hands hurt, and that it doesn't make people's joints hurt, just their muscles, that's it must just be overuse. You all know that's bologna, and besides, I don't spend a lot of time making repetitive hand motions or anything. I only work part time in a vet clinic.

I tell him if it's not the fibro, it might be arthritis, since my mother, her mother, and her grandmother all got arthritis in their 20's or 30's. He gave me this really condescending look and said "you're only 29, people your age don't get osteoarthritis." Riiiiight. Except for all the other women in my family

Additionally, I read a really good article on low dose naltrexone and fibro, and I wanted to give that I try. I figured he couldn't object too much since it's cheap, and at the low dosages they used in the study, there is a very small risk of side effects. Maybe it wouldn't work, but it's a pretty benign thing to try, as I understand it. He offered me cymbalta for the five millionth time, and I reminded him agin that I've tried it already TWICE and it gives me no relief whatsoever, and a few unpleasant side effects.

I also brought up another article about topirimate and nerve pain, which was another thing I was thinking I'd like to try. I'm already on topamax for migranes, and I tolerate it well, so I wanted to know if I could try taking a higher dose to see if it helped with my nerve pain. He threw a fit and said absolutely not, then he checked my dosage, saw it was on the low end of the dosage recommended for migranes, so he agreed I could take the higher migrane dose but no more <sigh>

So that's all I got outof my doctor today. A whole lot of eyerolling and "I don't think so", and a small dosage change for my migrane medicine.

It's sooo frustrating to do so much research, and go in feeling so hopeful about trying a new medication or therapy, only to be shot down over and over and over again. The rollercoaster of emotions is just killing me

Yes, I need to switch doctors, but I have no idea where to go. The three before him were just as bad. A Rheumy might be better, but first I need to get a referral from a PCP, and none of them seem to be willing to give me one. On the last insurance plan we had, I managed to go to one without a referral, but I can't do that now. Although the insurance doesn't specifically requite a referral, the only office that'd nearby requires on before they'll make an appointment. Gah, I hate this.

Really, I wish it was easier to find a decent PCP.

The problem with your doctor seems to be that he doesn't like to be told anything.  He thinks he's a god.  You do need to find another doctor, since this one is still in the Dark Ages.  See what doctors are on your insurance plan.  If you need a referral to see a rheumatologist, then you need to find a good doctor.  Instead of looking in the general practioner list, look on the Internist or Internal Medicine list.  My doctor is a board certified Internist and is very knowledgable about fibromyalgia.  He will work with me.  Internists are considered primary care physicians and they have more medical education then the general practioners.  

Once you see some doctors in your area on the list, start making calls and ask them if they treat patients with fibromyalgia...if the doctor deals with many fibromyalgia patients.  If you do find a good doctor, they could take care of you without having to see a rheumatologist.  Mine has.  But, a good doctor will send you to a rheumatologist if they know they can't handle your complaints effectively.

Choose your next doctor carefully.  I live close to a university that has a medical college and my doctor is affiliated with that.  If you have a college, university, or teaching hospital close by, they could probably give you a great referral for a doctor.

It is so important that you have a doctor that will listen to  you.  I've done some research and thought I wanted to try things and sometimes my doctor will explain why he doesn't think that will work.  That's fine with me.  I value his input.  But sometimes you have to do what you think is best.  You know your body better than anyone.  When I wanted to try malic acid/magnesium supplements, my doctor told me not to waste my money.  I asked him if they would hurt me or intefer with anything I was taking and he said no.  So, I tried them anyway and they have worked for me!  He knows it too and includes them in my list of medications.  Even though I have great respect for my doctor I will try things that will help keep me off narcotics...hopefully.

So, even though this was a very upsetting day for you, you have learned something very important.  This is not the doctor for you!  Do a little homework and find a good doctor.  That's half the battle with fibro.  Let us know how things go for you.

Sherrine

HARA

Post Edited By Moderator (Sherrine) : 5/17/2009 8:37:22 PM (GMT-6)