Hope all is well in your neck of the woods, and energy levels are decent out there! I have a couple of questions:
(1) How do your doctor's appointments normally happen? How do you help your doctor understand your situation?
Background - I am on an HMO which is a blessing and a curse. I was dx in May of last year by a different doctor, who promptly went on maternity leave and decided not to return. Fibro is currently my only diagnosis outside of the sub-components (CFS, Migraines, IBS, depression, etc). I got a new PC physician, and he reviewed her findings, and to some extent agreed with her. He has been receptive to my requests to hear my options on treatment, but when I take in a list to discuss, he sees it and immediately says "What are your top 2 concerns?" then goes into what I call 'point-and-treat' mode. The first question after fatigue comes up is "Have you been counting your steps and increasing them by 10% per week?" If I say no, he won't even discuss anything else on that thread. At no point has a rheumy or neuro consult been offered, other than neuro/back surgery consult to talk about sciatic nerve pain treatment. That seems to be a sledge hammer approach to me - especially given the established 50-60% success rate for a major surgery.
I have developed some new symptoms, and I don't even know how to approach him about it. I have been having tremors - showing up primarily in my hands, when I am tired or stressed or hungry. And the fog / memory seems to have VASTLY progressed. This isn't supposed to be a progressive disease, right? I think there is something else going on, but again, I don't even know how to approach it, because I can't really quantify it. I don't want to discuss just two things, because there are more than two things going on! And the treatment for pain, for example, Flexeril & intermittent narcotics as needed, causes a different major issue - constipation that doesn't resolve without fairly major intervention (Senecot). Do I ask for a consult? What do I do to get past point-and-treat for my "top 2" concerns?
(2) Have you ever tried a treatment outside of your doctor's care? How did you share the results?
Background - I tried one of my husbands low dose XR Adderall to try and break through exhaustion and fog this past weekend, because I had a day where things could not get put off a moment longer, and I felt out of ideas / options. It worked. It worked really, really well. Like I was me again. And I stopped hurting for the first time in literally months. Other than a minor emotional roller-coaster 32-38 hours later (yes, that long) - that I think would be manageable if I knew when / if it was coming, I felt amazing - energy, clarity, no tremors, no jitters, low anxiety, accomplishment, and NO PAIN. For almost 2 days. I felt alive. So how do I share this? How do I tell him, oh by the way, I self treated and it effing worked, can we try some more of that? Most of this is a long way off because we are TTC kid #2, and it is considered not pregnancy safe (I tested Sunday morning just to make sure I wasn't pregnant), so I wouldn't want to try it longer term until after conception / birth / nursing was done with - so 2-3 years out from today, if all goes well. But I did do it, and it did work. The last time I tried to have that discussion - cannabis for pain / anxiety (it is very legal where I live and you can get versions that have the CDB without the THC - the part that makes you high) - he shut it down and said "There are no real studies out there, so I don't believe it would help anything. It just a placebo." As an engineer / scientist that is a ridiculous stance - just because there isn't data doesn't mean it isn't a possible solution - but whatever - this tells me he isn't going to be very receptive to any off-scrip usage of meds.
(3) How many of you have tried Adderall vs. an SNRI? What was your experience longer term than a single dose?
Yes, I know we are all different, I am just wanting to test the sounding board, so to speak. I have been on Effexor - and while it was working it was fantastic - but after 5 years getting off of it was pure, pure hell for 3+ months. So I am a bit skittish of SNRIs and the side effects in me - significant weight gain that gets me into the pre-diabetic region even under constant dietary supervision.
Thank you so much for reading and sharing your thoughts!