Can't find a doc!

[Jettbear]

Hi everyone,
First off my thanks to all you fellow sufferers, may you have a pain free day!

I was diagnosed with fibro in 1989, got SSD on the first try, which as many of you know it is not easy to do. It has been a long road but found a Rheumy about 15 years ago who finally prescribed pain meds and soma. I was able to function and do my part time job. So he just retired and it has been a nightmare!

I live in NY so the laws for prescribing are tough! Saw my primary care who said I need a Rheumy, that I can't go on like this. Problem is there are none in the area who will treat fibro! My guess is they don't want to deal with having to write scripts. I asked receptionist what are we patients supposed to do, guess what? they are sending patients to their primary care docs. So I feel like a ping pong ball. Most days I can do ok without the meds, but some are unbearable. I have tried yoga, tai chi, vitamins, chiropractic, accupuncture, massage, craniosacral therapy, I see a therapist and have been for many years.

So I was wondering if all states are starting to refuse us treatment. It seems like that is what is happening. I would appreciate if anyone is experiencing the same problems in other areas.

Thanks!

 

[Siderea]

I live in North Dakota currently, but have never been able to get into a Rheumatologist here because the waiting list is far too long. There are only two rheumatologists here, and the population is growing so rapidly that the hospitals can't keep up. I go to New Hampshire regularly to see a Naturopath (who's the one treating me now because it's the only thing working) and my parents who live there, and ended up seeing a Rheumy there in Nashua. He was happy to work with me, knowing I was coming in because of Fibro. He was a great doctor, but thought I needed to stick to what my naturopath is doing because I'm over sensitive to prescription meds. He was able to confirm my diagnosis and rule out other possibilities for me, and will attempts meds for me if what my naturopath has me doesn't work (but it is working.) I also have a close friend who sees a doctor in Boston. This Boston doctor takes fibromyalgia really seriously because his wife suffers from it, so he's dedicated is career to working with fibro patients. Are you willing to travel north a bit?

 

[alexisfinch24]

I am so sorry that you can't find a doctor. I went through a similar issue in the beginning as well. Keep searching. Call all medical universities and hospitals. Fibro outreach centers and sites are good for finding doctors, too.

 

[foodietr]

A lot of medical colleges accept FBM patients. This is quite unusual for me to hear, that people are being denied treatment. I also suggest you visit a reputed university like Johns Hopkins which takes in a lot of fibro patients everyday. And having met some of them, they seem happy at the kind of care they are given. Also there is some experimental techniques used in certain hospitals where some patients are given treatments which are relatively new, and the results are slowly improving. Don't lost hope.

 

[jerblaster23]

I've been trying to get a second opinion for several years. I have no idea I stopped trying but I'm giving it another go at the moment. I live in Oregon and I'm on public care I assume that's why nobody cares that I can barley function. I dono what to say, wish someone had some advice on how to navigate the system I've had every rheumatologist in the city deny me accept one who wanted a second opinion which I can't get. I'm filing to be seen out of area with my insurance at the moment. It's a long and painful process I only just found out I could even do that.

 

[jerblaster23]

I got fed up with my dr about it and tried to find another, nobody would take me so i had to go back, I don't know is this normal? They say straight up we aren't accepting new patients with pain problems. Like they think I wan't drugs, I've been in pain for 4 years and never asked for any pain drugs, just to be seen.

 

[Jettbear]

Thanks for sharing your stories everyone. I appreciate the suggestions. Seems like no matter where you live it is difficult. I hope everyone can find what they need to feel better. This is not an easy illness to live with. Boston sounds good to me!