I do hate doctors. I think the majority of them can’t see beyond the end of their own nose. They are smart and learned A LOT of things in med school. That’s just the problem. They can’t conceive of any other option than the textbook way to do things that they learned in school. I can’t wait til I am a pharmacist so I can say, “See I am smart too! You better respect me.”
I have this nerve disorder – it affects the tibial nerve area in my inner ankles the most. It also affects my hands, my arms, my shoulders, my back. Why they can’t explore further that something SYSTEMIC is going on is beyond me. All they do is focus on my ankles and stop listening to whatever else I have to say.
Doctors said ICE ICE ICE – in October, I stopped icing, which I had been forcing myself to do for two months (and which was so painful it left me in tears every time)….after two days of no icing, I could stand long enough to take a shower again.
Doctors couldn’t figure out why I can’t do situps, leg lifts, or kick my feet while swimming. They kept saying “you should be able to do these things, its just your feet”….THE DAY I quit doing sit-ups, I was able to walk to the mail box without ANY pain. I still don’t do them, I have gotten slowly (very slowly) able to walk more block by block (think I am up to 4 now!).
My podiatrist insisted that the only way to help the nerve was to wear my running shoes AT ALL TIMES with RIGID prescription orthotics inserted. I spent $400 dollars and got the orthotics. When I stopped using them, I didn’t feel pain while sitting anymore, I could sleep again (most days). I got over-the-counter orthotics that were soft. Then I started walking barefoot – I keep slowly improving and can stand longer to do chores.
I believe that the reason my nerves in that area are as bad as they are is because they told me to do physical therapy and I believed them, even though I told them it was making it worse. They told me to do yoga and I did it even though it hurt. They diagnosed me initially with a tendon problem without even taking X-rays or an MRI.
The doctors I like say frankly, “I don’t know what’s wrong with you.” I appreciate that so much. I am tired of people pretending like they know or assuming things.
I go by the rule, “DO WHAT DOESN’T HURT”. My new thing with this is walking barefoot everywhere I can, around the house and down the street. When I have to go into a store or restaurant, I don’t tie my shoes, I make them as loose as possible. (They said to always tie them tightly.)
I have gotten pretty sick of being disrespected.
I have a couple doctors I like now. The ones that believe me. The ones that admit they don’t know what’s going on. The ones who admit we just have to wait and see.
What have I learned? Do what I believe is right. Accept that I may never know what is wrong. Be patient and let a few months pass, see if I improve, and then go back for another round. Fight to get second, third, infinity opinions. BE ASSERTIVE. Believe in my intuition.
My arm is really hurt now. It may be another nerve thing. But it feels different. It feels like the tendon that connects the lower part of my deltoids to the humerus, underneath the head of the biceps, is strained or (hope not) torn. It feels kind of like a pulled muscle. No idea how that could happen swimming 4 days a week for 15-20 minutes as slow as an old grandma.
I am seeing an arm orthopedist in two weeks (the earliest I can get in) but today I decided to go see an internist/primary care doc. I don’t have any expectations. I am kind of just going to whine to someone, curious to see if she will actually be good, and to get a sling for my arm. I still have to have an open mind though. I can do that. But I am so anxious about it. I get so anxious that I can’t explain everything the right way or that I won’t have time.
Right now, from the doctors I like (collective opinion of the rheumatologist, my internist, and the two neurologists I have consulted), my diagnosis is this – – – I have fibromyalgia. I also have a nerve disorder, probably autoimmune or tomaculous neuropathy. It is not uncommon for fibro and autoimmune diseases to run together. They just won’t pursue the autoimmune thing much. I just have to wait. I just hope my arm is okay. I hope its just a nerve thing and not a muscle thing. I don’t know what I will do if swimming is taken from me too. But you know what? I am coping better today than I thought I would. I feel more patient. But I still keep crying every ten minutes, just so frustrated.