I have been reading here for 2 days, and feel like I would like to participate even though my pain levels aren't quite as severe as some that I have seen here. It seems like a good place to get some perspective and support. I don't have a live support group, so this is where I get it. I am active on my condition specific forums as well.
I have Rheumatoid Arthritis, Bipolar, Obstructive Sleep Apnea, Seasonal Affective Disorder, gluten sensitivity (not celiac disease), anemia, and "other generalized muscle soreness" that I haven't found a cause for yet. I live at a pain level of about 3-6. I might have a 1-2 day in there somewhere, but they are "gifts" and I have "flairs" of 7,8,9 occasionally. Due to my bipolar issues I am legally disabled as of last September.
I am 32 years old, married, and have 3 girls ages 12, 10, and 6. Five years ago I had no medical problems whatsoever.
What has happened to me lately is this: Three weeks ago I went to my 6 month appointment with my rheumatologist feeling like I have a lot of pain and fatigue and something must not be working and I need to be prepared to adjust medications to a more effective dose. What he said is that he feels that my inflammation is under control, and that's what the medication is designed to do. The medication is doing it's job. The pain that I feel is from the joint damage that was done before the inflammation was decreased. The damage is not reversible, the pain is not going to go away, but like getting into a pool of cold water, I will get used to it over time. He will not adjust the pain medication because if I take something too strong for too long I will become addicted to it , it will loose it's effectiveness over time, and the weaning process is worse than the condition itself.
Ten days later I was in my General Practitioner's office saying this cannot be right, should I go to a different rheumatologist? Does it sound correct? What do I do now? How do I treat the daily pain? I was planning for it to get better- I was pushing myself to reach a closer "end"- this news of it lasting forever (and only getting worse over time) makes me want to give up. And in fact I had given up in a sense, I had barely gotten out of bed in those ten days. He agreed with my rheumatologist, saying that it seemed right and made referrals to a dietitian to help me loose weight so I will put less strain on my weight bearing joints and to a pain psychologist who is used to working with mood disorders and chronic pain. He told me to not take Motrin as much as I have been (800mg 3x daily PRN as a first drug for pain) and use Tylenol first instead. He is worried that because I am so young I will damage my digestive tract and will not be able to take that type of drug later. He says "use it less now so you can use it longer". He gave me a "keep your chin up" speech and sent me on my way.
Because I am not taking as much Motrin I notice more swelling in my fingers. I have more daily pain because the Tylenol doesn't work as well, but if I medicate the breakthrough pain with Motrin, then I'm taking the same amount of Motrin as before plus more Tylenol than I was before I switched it around.
I was not able to get into the psychologist I wanted to because he wasn't accepting new clients at the time, but they scheduled me to see the counselor there. When I went in I had to describe what RA was and what it physically did to the body. She wasn't very familiar and was surprised to learn it effects body organs as well as joints, and that it attacked all joints in the body, not just the hands. I went over the drug list and she had me describe what each drug was, what it does, what the side effects are and why am I taking it. (took almost half an hour) She went into a tangent that I was taking way too many medications and I really should look into books on natural healing of arthritis. She insisted if I heal my digestive tract with healthy eating and beneficial bacteria my immune system would stop attacking my joints and I would stop having pain. (She obviously read something really weird somewhere). On the 2nd appt (yes, I went back- I thought maybe me or her were having an "off" day and I would try one more time) she wanted to focus on my bipolar issues. She asked me if I thought maybe demon spirits were attacking me. She again suggested that I should heal my digestive tract and part of that would be me thinking about not taking the pharmaceutical drugs, because that is what is causing me the most harm.
I walked out and canceled all further appointments with this person. I scheduled with a different psychologist in the office for the following business day, Monday.
On Monday at 10:30 I came in to find that the receptionist had not informed the counselor that I had canceled the 2 more appointments that had been scheduled. I asked her again to make that known to her. I checked in for the appointment for the psychologist, and waited 15 minutes. I went out to ask if she was running late and the receptionist said she would call her office. 10 minutes after that I went out to ask if they got ahold of the psychologist. The receptionist said she was about to call when her phone started ringing, and will call her now (sorry). Five minutes later one of the other psychologists said she would check to see what was going on. Five minutes after that I went to the desk and found that they were texting her because she was not in the office. It seems that she did not check her schedule before she left the office on Friday and was not aware that an appointment was added in the morning. She thought her first appointment would be at 1:00 and would therefore not be in until then. They were trying to get through to her to inform her I was there. By that time I had been there for half an hour. I offered to reschedule for Wednesday at 1:00 (between 2 other clients so I know she will be in the building).
I assume I will give this psychologist a 2nd appointment, like I did the counselor, but I'm not sure I want to go to this clinic at all.
At least with all of this trouble it kicked me out of the apathy cycle I was in. I'm to annoyed to be apathetic.
So, what's your take on my story? From your perspective what do I do?