Hello blog friends!
Thank you all so much for your sweet comments on my doctor post. Everyone’s support touched me so much and has helped me keep going.
The last week has been really strange with symptoms. It really enforced that I have two types of pain: my nerve pain, and a deep, widespread pain in my muscles and tendons.
For instance, I have been struggling with this pain in the back of my head, neck, and upper back that is like one big muscle ache with accompanying stiffness. The worst part is the heaviness in my limbs-the last few days in my arms especially-that makes them feel hard to move and lift up.
The rheumatologist I saw a year ago alluded to this: there are most likely two things going on here… I have Fibromyalgia and Fibromyalgia-type pain (with other symptoms associated with that) AND nerve pain along specific nerves and nerve areas that is separate (some type of multiple nerve entrapment or neuritis). These two types of pain could be caused by one disease, or they could be two separate things.
I wish he would’ve said that in direct, plain terms, but that is the gist of what I got out of his message. Basically, he said I fit all of the diagnostic criteria for Fibromyalgia. Then when I asked him if that was also the cause of my nerve pain, he said no.
So, an update:
After calling my HMO, very angry that they could not get me in to see a primary care doctor for 7 weeks, they got me into see a general practitioner this morning. I was really scared about having trouble with motor function. I couldn’t wait until June 17th (I made that appointment three weeks ago).
My goals going into the appointment this morning were these:
• Talk to someone (get some emotional support) about my fears regarding these new symptoms.
• Get the ball rolling on any referrals I need to specialists.
• Give them my medical records.
• Get a new doctor’s opinion.
They assigned me to a random doctor, whoever could take me. I researched him online, and was pretty pleased with his reviews and his mission statement. I prepared so many things last night; I was so anxious that I couldn’t sleep all night. I made copies of all of my medical records: all of the labs I have already had done, my nerve conduction studies, my notes from the original podiatrist and neurologist that I saw, the MRI of my right ankle. I printed out that list of my history and symptoms from my last post. I wrote down an outline of what I was going to say. I wrote down all of my questions.
I got to the medical office only to find out that they had changed the doctor I was supposed to see without telling me. I was upset because I had already researched the other doctor and felt okay about him. I was going to argue about it, then decided screw it, I will just make the best of this. That turned out to be a blessing, because I ended up having a good appointment… Finally.
As I waited for the doctor to enter the room, I started crying and I was visibly shaking. My leg was involuntarily moving an inch up and down, shaking.
I decided again today something that I have decided before: crying works. Every time I have cried in a doctor’s office, the doctor started listening to me, taking me seriously, and was much more caring. So I guess I would recommend letting it all out.
I explained to this doctor, Dr. Huggins, a man who looked like he was in his mid-30’s (I prefer younger doctors), that first and foremost I was there to establish a patient-doctor relationship, get some emotional support, and get his opinion. He said he wasn’t really the man for that, because he is a per diem doctor and not my regular doctor. But then he said he would do his best to discuss my fears, get all the information into the computer ready for the next doctor, and get a jump start on referrals and the next steps. That’s all I was really expecting.
He ended up dislodging some of my fears. I left feeling supported and not so alone.
It’s too long to go into everything we talked about and how he did the above. I ended up with a referral to the Physical Medicine department. I had never heard of this before. Apparently, they are a mixture of neurology and orthopedics. They often deal with chronic illness, chronic pain, and associated diagnostic procedures. When I go there, I will get a real 45 min. consultation and be able to go through all of my records. This is really good, much better than the normal 15-20 min. appointment slots they give you. Now that I have this referral, I can make an appointment with them as soon as possible.
Two things that I was pleased with that really match my philosophy were:
1. He didn’t put any of my previous diagnoses into the computer or in the referral. Why do I think this is a good thing? He said that often doctors are guilty of seeing our previous diagnoses, and letting them unconsciously skew their second opinion and the path they go down from there. I have told my mom this dozens of times. I think it is kind of human nature.
2. We discussed the cycle of chronic pain/chronic illness and anxiety/depression. I really believe that someone develops a chronic illness, it makes them anxious and depressed, and this makes their pain worse, which starts the cycle all over again.
Also, I liked that he was a per diem doctor, so he didn’t officially work for the HMO. Because of this, he didn’t really care about talking shit about them. 😉 So he was able to tell me that he thinks the Physical Medicine department is really good, and the neurology department really isn’t that great because they get pigeon-holed in the classic, textbook symptoms. He also told me that the internal medicine doctor who’ll be my primary care doctor (the one I am seeing on June 17th) is really good, and that he wouldn’t say that about all the doctors in the office. That was good to hear.
Conclusions from today:
• We may never know what’s wrong with me, but we can keep trying to figure it out.
• Even if we can figure out exactly what’s wrong, we can name the symptoms and work on managing them and managing my fears. He said he doesn’t think that I will ever be 100% again. But I can make the goal to be able to walk again to get where I need to go, around the grocery store, etc., and he thinks that may be achievable.
• He has confidence that I can find someone who cares about me.
My other questions about getting a handicap placard, and anti-inflammatory gels can be answered by the Physical Medicine department. Also, he ordered a repeat of the nerve conduction studies, and told me to ask them about getting a nerve and/or muscle biopsy done. The biopsy is the next diagnostic procedure I really wanted to get. I think the histological findings on that will be able to tell them a lot.
Right now I need to try not to be afraid.
I just want to be able to keep swimming my 20 min., even 15, five days a week. My old neurologist told me that would be okay if I took ibuprofen before I swim. So far that seems to be pretty true. Knock on wood. I want to ask the internist about that too.
Thank you so much for listening. It felt really good to write this all out.
If you are struggling with a chronic illness, you may have to take some breaks with the doctors, but never give up the fight to figure it out and get help.
Peace be with you.