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[gennimom]

I hate hearing those words: "There is nothing more I can help you with." Yeah, only because you won't open your ears to LISTEN to me. Only once did I ever complain to the doc that he wasn't listening. Amazingly, he turned around and told me to tell him more. It resulted in him removing a piece of torn cartilage from my knee.

I hope the new guy listens, MsT.

[lenniel]

Me, too, Ms_t - hang in there and keep us posted.

Hope everyone is doing okay!

[gennimom]

MsT? A report on the new guy? How'd it go?

[ms_turtle]

Well, it was different and in a good way (so far). He's not the type to keep throwing pills at something in hoping that one of them works. For myself, I wasn't going to proceed if that's what he wanted to do. Since that bench mark has been passed, I will reassess again after 3-4 visits.

It is positive that we can converse, on a patient-physician level and a physician-scientist (me) level, the research findings, margin of error, effectiveness (research and clinical), risks, etc. of various forms of treatment.


Right now I feel like I'm getting a cold. :(

[gennimom]

I'm glad the visit went well!

Are you sure it isn't just the weather? I'm hoping that is it, so that you'll feel better sooner!

[msparticularity]

It is positive that we can converse, on a patient-physician level and a physician-scientist (me) level, the research findings, margin of error, effectiveness (research and clinical), risks, etc. of various forms of treatment.

This is what I want from my practitioners, too--and so seldom find. I seem to do best with middle-aged women, interestingly.

And on that note, everyone, I did see a medical practitioner this morning! MrP and I decided I was not coping at all, and that it couldn't wait for a trip into the big hospital practice in the city. He got me in to see the PA in the office where his family practitioner is. She basically just reviewed my meds and gave me refills on a couple of the crucial ones until I can get in for a workup with one of the internists there (in a month), and also go into St. Louis. Hooray--I have drugs!

[gennimom]

Yay, MsP! At least you had someone who would help you maintain the status quo for now! No pain until the next visit!

[lenniel]

Good news, Ms_p! I was going to get my nagging shorts on...I'm also glad the visit with the new guy was okay, ms_turtle.  Hopefully, he'll have some better strategies than "let's try this new drug."  I hate that - always feel like a lab rat when they randomly prescribe stuff.

Doctors really don't listen to women, and middle-aged women at that, ms_p.  You are, as always, so correct!  My poor mother has been complaining on breathing problems for YEARS, and her doctor finally gave her an inhaler and a breathing test.  Guess what?  She has breathing problems, and probably asthma.  She hasn't slept so well for years.  And her doctor is a fairly good one.  Arghhhh...

How is everyone doing this weekend?  I made it back from my trip and am gearing up for another.  Fortunately, the allergies were not bad, thanks to lots of drugs.  I sound like I should be in a TB ward with the cough, but that will clear up in a few.  Mafi mushkela, as we say in Arabic. (no problem)

How are you doing with the leg cramps, gennimom?  Are you getting some pain management solutions, shambelle?  Hope you are doing okay, biomancer?

Have a quiet and restful weekend, all!

[gennimom]

The increase in my dose has helped, and I'm sleeping on the muscle relaxer, but I'm not sure how well. The tiredness in the morning is probably due to the higher dose as well, though. I just have to keep reminding myself that we just have to keep the issues down to a certain level so I can function.  The knowledge that this will never get better is not good, but I can learn to keep it from running my life.

[msparticularity]

The increase in my dose has helped, and I'm sleeping on the muscle relaxer, but I'm not sure how well. The tiredness in the morning is probably due to the higher dose as well, though. I just have to keep reminding myself that we just have to keep the issues down to a certain level so I can function.  The knowledge that this will never get better is not good, but I can learn to keep it from running my life.

I agree--it's all about the balancing act. Enough drugs so I sleep soundly and have no pain = being asleep and/or really out-of-it all the time for me. My answer is to work on sleep and just try to tolerate the physical discomfort during the day. You, however, get more than just "discomfort" during the day, so your juggling act becomes much more complex than mine--and oh, yeah--it's a moving target for you, too!

I really think you're doing well--hope the improvements continue!

[gennimom]

Moving targets. Yep. That's the way to describe it. I had to run to the office to get something this afternoon and then run by the grocery store to pick up milk. The farthest distance I had to drive was 9/10ths of a mile. I managed to strain a muscle in my arm, then one in my hand, and another muscle in a leg during each of the legs of the trip. Now, my face hurts after eating. Moving targets, indeed.

I've read of Isaac's sufferers describing a symptom in their, um, buttocks feeling like a rolling pin being rolled up and down their but. I didn't quite get that feeling the other day, but I did get the feeling of butterflies in the same location. Weird. Those kinds of things make me think of it as almost an adventure.

[shambelle]

Its been an interesting 2 days.
So I went to the pain clinic doctor yesterday. I was adamant about the fact that I do not want to have to take drugs for my pain unless we try other things and they fail. The doctor said that there are two medications she'd recommend next - lyrica and amytryptyline (I probably spelled that wrong) - taken together. I know too many people that have taken one or the other and have had a number of issues I'd like to avoid.

She gave me a new option - a nerve block.

And she did the block this afternoon. It was 24 hours from the time she saw me until the procedure. That impressed me - she was serious and fast. The best part was that she listened, and because I'm a physiologist with a specialty in steroid biochemistry, there was no BS that sometimes doctors give patients. I was referred to her by a colleague who said I'd see immediately why he liked her and wanted me to see her.

The block - for anyone that has coccyx and/or rectal pain (sorry if that's TMI!) - is at the ganglion impar - and this was one of the most painful things I've endured in the 2 years since I've gotten sick. I had no idea it was going to hurt like that - I cried on the procedure table for the first time in over a year. I think I scared the doctors... but at the same time... it showed how bad the pain really is.

The block is a local anesthetic and steroid mixture, and it can take a few days to work; however, it might last a day, it might last a week, a month, or longer. It's a diagnostic tool - if it decreases the pain, then I'm going to have something a bit more serious done - radio frequency ablation. We're going to fry those nerves and hope that it gives me longer term relief.

I'm a little weirded out by the who frying my butt nerves thing, but maybe it'll be better than constant narcotics or other drugs. I do feel just a bit more hopeful now that I know there are other options out there. Even if they don't work, I'll have tried them before returning to drugs.

I'll see the doctor in 2 weeks for a follow up and some more poking to assess the pain, and then we'll see what I get to do next. Of course, I have my next remicade infusion the day after that... fun fun!

Hope everyone here is doing well.   :)

[biomancer]

Yikes, Shambelle!  That sounds like a way-beyond-uncomfortable experience.  I hope the nerve block is working for you.

 I hope everyone else is doing well.  My cysts are still there, and the arthritis has been flaring up with the fall rains, but the asthma is still under control so I'm generally doing OK.

[gennimom]

Wow, Shambelle. I don't even want to think about what you are going through. I've been through several similar injections myself, but I was always unconscious at the time. Sending you good, pain-free vibes!

I've been doing better lately with the pain on the new dosage of my medication. Which means I notice the twitching more. I'm beginning to see it as funny, watching parts of my body do something all on their own. I just wish I could get this sleep thing down. I'm sleeping better, but things keep me from getting to bed on time or wake me up. I've got to go see the doc this morning for a follow-up.

[msparticularity]

I am, thankfully, doing better. The low dose of pain meds at night is just enough to let me actually sleep, rather than lying awake and hurting, and it is just astounding how much of a difference that makes in life. I've been reading over the last few months that more and more doctors are taking pain management seriously for RA, and I've got to say I'm grateful the thinking on this is changing.

Biomancer, like you I'm juggling the arthritis and asthma but doing fairly well--and I have to say I am NOT missing the cysts! I had 17 years of them on my right ovary before they finally removed the ovary, rather than just the cysts each time. Then I just had the weird and heavy bleeding and hideous cramps for another 14 years. Have I mentioned how much I'm enjoying menopause?

Shambelle, I hope this block works for a little while, and that having to endure the pain of getting it leads to some good insights on future treatment for you. And GM, I'm glad the pain is better for you, too; I would bet that the relief is why you're able to be amused about twitching. :)

Lenniel and Ms_T, I hope you're both having a good week! And greetings and good wishes to anyone else hanging out here, too.