I am experiencing a very similar struggle with my doctors. For me, they just won't take me seriously enough to try to figure out what's actually wrong with me. I finally, after 3.5 years, found a doctor (pulmonologist of all things) to consider autoimmune disorder as something that may be the problem and he ordered an ANA test (which was super positive).

My best suggestion at the moment is to keep a very detailed pain journal. I have an appointment this week with rheumatologist #2 and for about 2 weeks I have been keeping a detailed symptom journal (days and times, pain or other types of symptoms, what type of pain/how it feels, and pain level on a 1-10 scale.) I have been told there are some good websites or pinterest boards that can help you make a really organized one with color coding etc. to make it visually easy for your docs to read. I'm just keeping it simple for now and seeing how it goes.

Hopefully that can be helpful for you! I know you only have a few days before your appt. but I would recommend starting now and then making copies to bring to your appointments and then continue for a month or so with the journal to get a big picture. My other plan is to not let this doctor leave the room until they have heard me out, listened, and given me ideas or the name of someone who can! I've waited 4 months to get in with this specialist and I'm not about to leave until they can get me the help I need.

Best of luck! Stay strong. I know how easy it is to say these things but I am often at a loss for words and feel small when I'm actually in the office. That's why I'm coming prepared this time with documentation.

Hope you are able to get the help you need, feel better.

Dyna

Megan,

Your best bet is to write it down. You've had the same Dr.'s for a longtime, so they pretty well know your case. They probably think you have the pain tolerance of a large Elephant since you only get a few Tylenol 3 a day.

So now, tonight, or tomorrow when your thinking of all the things that your pain is harming or interrupting, write it down. Write down when your pain is the worst, what affects it the most, write down about your gait and unsteadiness on your feet. Write it all down. Form the questions you want to ask and write them down.

Some people just get overwhelmed when talking with Authority Figures, so the best thing to do is to write it all down and either read it to them, or hand it to them.

Take care,
Kat

I use an app called "My Pain Diary". Also, I use a app specifically for my RA. You might see what would work best for your needs. I wrote things down for a long time, but than I would forget my journal at home. Not very helpful! However I don't leave home without my phone . Just something to consider.
Getting your thoughts in order before your appointment is always good. I too write my questions or things to cover down ahead of time. Doctors are busy people and I found that I would get sidetracked if I didn't have a list. Just remember you're in control of your health, it's your body and nobody knows it but you! If you don't like the way your PC is treating your pain; either find a knew PC doctor or see a Pain specialist. Hoping your appointment goes well!

Hang in there Megan, I know you don't live in a very populated area and its not really probable for you to change Dr.'s, so just make sure that the Dr.'s you do have are aware of the hell you're often going through.

You might also look back through your posts here on the Board and see some of the questions that you asked us for advice on.

kat

I really appreciate the replies, and would love to hear from anyone else with some perspective on this subject. I've done the pain log thing on and off over the years, but it's been hard to make it stick. Since the first of this month I've been using a log released by the (former) American Pain Foundation. It's got a lot of good information, but am concerned that bringing it up could result in data-overload and eat up precious time during my appointment. Guess it's not really "eating up" the time, if it it results in more understanding and better pain control. (Link to pain log, for those who are interested: http://pa-foundation.org/wp-content/uploads/Daily_Pain_Diary.pdf )

Thinking about it, and looking back on some of my earliest posts here, it's clear there's a lot of baggage I'm carrying, related to my doctors doubting me so profoundly early on in my disease... I'm going to look into talking to a counselor about this, as it's been a long-term issue that's diminished my quality of life.

Anyone else go through this while they were in the process of being diagnosed? How'd you move past it?

I apologize in advance if this doesn't make sense to those reading it. Lately my words are just gone. I can't put together sentences without it sounding jumbled. Yes, I have had many doctors doubt me and ignore what I was telling them. It was especially hurtful to me because I worked with them for over 8 years before things started going downhill. The patient doctor relationship is not to be taken lightly and when trust is lost man it's hard to get it back. He didn't trust what I was saying and I lost faith in his ability to make good decisions about my care. So I left. I realize now after reading above post that you don't have that option. So talking to someone would be helpful. Talking with someone has been one of the best things that I've done for my health. I hope that you are able to work through the hurt and move forward with your healing. Good Luck!

Yes. MeganElaine, I can certainly relate. It has been some 22 years that I have been dealing
with these issues. Also I'm someone who didn't spend much time in the doctor's office except
mainly the chiropractor and that usually went well. After that I went 'through the revolving door'
with chronic fatigue and Lyme disease. No one knew what I had, They didn't do proper testing or
diagnose me. This was over about a 12 year period.. Then, I went to an alternative doctor who
did do the testing, diagnosis and treatments which I needed. I find with autoimmune illness that
alternative doctors are educated and usually know how to treat us.
Of coarse, the majority don't take medical insurance, and this I feel is part of a national health crisis So many of us don't find or can't afford what we need. I have heard this repeatedly
in support groups I have attended.
I also seek counseling to deal with these things when I need it.
As to pain control. Your doctor may just be afraid to over prescribe. Several doctors
in my state have been taken before the state medical board for over prescribing pain killers.
They can easily loose their licenses for this.
It is certainly good to be prepared. I always write down my questions and read the
list when I go in. I sometimes copy it and hand one to the doctor.
In your case, I don't really know what to say. I will say that it's not you and you're
not 'crazy' if you're starting to feel this way. If you lived in a bigger city, I'd say change
doctors. Short of that, you may wish to consult with an herbalist. There are many
natural tinctures and capsules for pain. Maybe you have a natural food store where you
live. Maybe you could find one on the net who you could have a consultation with.
The main thing is, don't give up, keep doing research and asking questions!!!

Hi Megan, is there anyone who can go with you to your next appt? I've had occasions when I've felt like a dr hasn't been listening to me or I've been too physically and mentally exhausted to explain, yet again, exactly what's been going on and it's really helped for someone else to give their perspective on how I seem to be getting worse or have been struggling to cope. Or maybe you could tell your pcp exactly what you've said here...that pain is having a huge impact on your life, even when trying to do basic things at work, but you don't quite no how to explain it when you're in a doctors office, but you really need help in order to function and have some quality of life. Good luck at your appointment, let us know how it goes. Regards Maddy

It doesn't matter what you say to them.They don't listen and don't give a dam. They look at the chart the clerk made up, make an instant diagnosis and sit out fifteen minutes deciding what specialist to shuffle you onto.

In my forties, I became very weak and tired and very depressed It was all I could do to just drag painfully thru the days. I went to Dr. after Dr, for ten years. Every one of them told me to just go home and rest. They ALL assumed I was going into menopause. Then one day I went into a thyroid coma and almost died. It had been thyroidism all those years but because I was a middle aged woman, not one doctor could even be bothered to check. I hate doctors.

I just joined and read this tonight so I hope your appt went ok. It's unbelievably hard to find a dr to help with pain meds. I went to some really bad ones one accused me of being a drug addct and another said I was a drug dealer, which I am neither. I just had to keep trying and tell the truth, cause I think the good ones can tell if you're lying. I've had s really good dr for about 2 years no problems at all. I hope he never transfers.

Caracal, welcome to our crazy lil corner of the web. We're all a bit Special here. lol

You made a good point, I am an advocate for believing in and finding Good Dr.'s. My PCP, PM, 8 Specialists/Surgeons and Psychiatrist have all been with me for 10 - 17 years. Hell I've had the same Pharmacist for 17 years. I don't like change and run from it, hypothetically, because I can't like actually "run". lol

It's not easy finding good Dr.'s, but like you pointed out I believe it is a skill that the good ones possess in telling if a person is being truthful or not.

So, two weeks after my appointment, my doctor's treatment recommendations finally arrived... in the mail. My MRI didn't show damage to my hip joint, so I'm supposed to go back to physical therapy. I've "successfully" completed 3 rounds of PT already for this issue and found it to be detrimental rather than helpful; something I mentioned clearly at my last appointment. Feeling pretty frustrated/hopeless... not many options left for me anymore.

Megan,

Have you ever heard of Platelet Rich Plasma Therapy? You lay on a table and they takes out a certain amount of your blood they run through a Centrifuge. After they've completed spinning it, they put it straight into the injured joint site. Thi might be something successful that your could try out for your I'll paste in the site you so can check out the efficacy of it. I'm going to be doing it here on my knees and shoulder here in a couple weeks.

Might be something to ceck into. If off to bed now. I hope you have good ay t

My problem with the doctors is that they don't seem to be able to answer my question about what is causing my pain. It's really just annoying and depressing. No one seems to have an answer. They tend to recommend me to ask another doctor.