Doctors and my Patience

Posted on October 19, 2011 by Tracy Seekins

In 1997 while working for a large corporation, and making decent money, I became very ill. My body was in massive pain in many areas. My stomach was cramping and nauseas much of the time. I began having chest pains that would just double me over and make it difficult to breathe.

The doctors couldn’t explain all the pain and illness I was expressing. One even told me it was all in my head. I grew more and more depressed. I knew there was something really wrong but nobody seemed to be able to help and most didn’t seem to care.

Finally, in 1998 a visiting doctor at a new practice I was going to was able to see ME. She accepted that I was in a massive amount of pain and actually did a thorough exam. My bones popped and cracked as she moved me around. Suddenly she straightened my leg and my knee made the loudest SNAP! She almost dropped my leg as she kind of jumped back a bit. It surprised her and I both.

That was when she decided to send me to a specialist. She believed she knew the problem but wanted to make sure we got it right. Four weeks later I was diagnosed with fibromyalgia.

Over the years different doctors have tried different methods of keeping my pain at tolerable levels. I have not lived a day without pain since that time. Most medicines don’t work well or make me very ill. Pain medication can sometimes keep it under control but most everything I’ve been given causes me extreme nausea.

I’ve been given anti-depressants and muscle relaxants and various forms of medicines that aren’t much better than aspirin.

I’ve been accused of “seeking pills” when I was only seeking help or temporary relief. I have been yelled at, lied to, and treated with utter disrespect.

Finally I got so tired of dealing with doctors, who quite obviously did not understand my condition or the pain I live with daily, that I just stopped going. My final experience was so traumatizing that I decided I would die before seeing another doctor.

So for five years I didn’t see a doctor. If I got really ill I would go to the emergency room and get something to get me through but I refused to deal with any doctors on a regular basis again.

Then I began to get ill once more. Recently, over the past 3 or 4 months, I have begun having illness once again attack my body. It started small enough, some pain in the abdomen, nausea, and dizziness. I thought, “this is nothing, it will pass”.

As days turned into weeks I became more and more concerned. The symptoms were like nothing I have had before and were getting worse. It became difficult to stand for more than a few minutes at a time and walking any distance was completely out of the question.

As weeks turned into months my friends and family began to push me to find a doctor. I was feeling worse and worse with no relief in sight, and I had a fear in the back of my mind that this could be something quite serious.

Finally, I gave in. During a trip to the hospital with a dear friend, I grabbed a flyer that was for a doctor referral service. I called the next day and got a couple of names. Within a few days I had an appointment set up.

The pain in my stomach had lightened up but I was beginning to get some serious migraines and still felt it best to get in with a doctor for a good checkup and possibly some relief.

At my first appointment I was so happy. She was amazing. She listened to me. She paid attention and she seemed to actually care. We talked about focusing just on the abdominal issue for the moment, at my request. The reason I asked this is because in my experience if you overload a doctor with your issues on the first visit, nothing gets accomplished and nobody is happy.

Before I could even get into the exams that she recommended for me to have, I was hit with the worst headache ever. I didn’t sleep that night and when my husband awoke I had him take me right to the emergency room.

After a few tests and some meds being given the migraine eased up, but the doctor there wanted to do a spinal tap to check for meningitis. I didn’t think anything of it so I signed the paper and they did it. The next week would teach me NEVER to agree to that again.

When you have fibromyalgia anything can set off a bad flare up or intense pain in your body. The spinal tap did just that. I couldn’t walk without the help of my husband for a full week and I had migraines every single day that were far worse than the one I went in to get rid of. Thankfully the hospital had sent me home with some pain medications specifically designed for migraines and I did’t hesitate to use them. I was actually quite pleased with them, it was the first time a pain medicine didn’t make me feel sick and did what it was supposed to do.

When I began to run out of the medication and realized that the after effects of the spinal tap were still plaguing me, I called my doctor. They got me right in to see her and she refilled a small amount of the medicines to get me through until my next appointment.

Today, I went in for my “next” appointment. I am out of headache medicines and was praying not to get a migraine. Though the effects of the spinal tap have thankfully passed, I am now suffering from massive spasms in my back and neck that are traveling up and causing migraines. I don’t know if I was having this before or if the spinal tap set off a chain reaction in my body but either way it is miserable.

My doctor, as sweet as always, gave me the results of my tests she had ordered. Apparently the tests say I am the picture of health. Too bad my body doesn’t agree. As she and I talked further about my sufferings we decided to get me to a neurologist just to be safe.

Then I asked it. “What are we going to do to keep this pain under control?”. Her response was that their practice does not do pain medications and she would have to refer me to a pain clinic. I have accepted this but with some minor frustrations.

First I have to get through the next few days until I can get into a pain clinic and the migraines are miserable, as is the back pain. My second concern is that my doctor cannot count. She has put me on muscle relaxants to help ease the problems in my back but she only gave me 20 prescribed at 2 a day and our next appointment isn’t for a full month. This is frustrating because it means she doesn’t understand how long a fibro flare can actually last.

Of course I know she can count. I also know that as a doctor they are fully capable of helping me with ALL of my existing medical problems, they simply choose not to. I of course could choose another doctor but I seldom find one with such a personality that I like them. So I’m rather stuck. Go to several doctors to take care of me, or choose one with a personality less suitable but who is willing to be my DOCTOR.

So here I sit in fibro frustration once again. I am just going to begin praying that this flareup passes soon so I can not have to see a doctor again for a while. I prefer it that way. I don’t like doctors and they obviously don’t like my condition.

My sincere wish is that someday all doctors will understand fibromyalgia and acknowledge the very real pain that those of us who have it endure on a daily basis. It’s not always this bad but there is pain every day. Many times it is tolerable but when it’s not it’s bad and nobody should have to live like that.

I sincerely hope that doctors will become familiar with such things and treat their patients accordingly. I sincerely hope that doctors will learn to treat their patients as people, with kindness, and with respect.

For now I’ll stick with the doctor I have. At least she is kind and respectful. At least she seems to want to help. She’s not perfect but it could be, and frankly has been, much much worse.