Advice needed (2 topics) - Doctors and treatments

Symptoms & Treatments
1

Hi all,

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!

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i dont know if you need referrals for seeing a neuro doc( not neuro surgeon) or other docs you feel may help you. Neuro docs deal with illness that involve pain as do rheumys. I would call around to some of these docs and see it they take your insurance and if they deal with your issues. When you find ones that you would like to see then you tell your doc that you want to see such doc and that you need to have a referral. i would not really ASK if he would give you the referral beacuse i do think it is your right to see a specialist. You could check with your ins how it all works and let them advise you. It does not seem to me like your doc is all that helpful. I always bring a list to my medical doc and he listens as i address what ever i need to. I dont mean to be unsupportive of your doc but i do not really like the sound of him/her and if it was me i would look for someone who is more supportive of you and LISTENS to you and addresses your issues. This doc does not seem open enough to me. I have changed many docs till i was satisfied that they had my best interest at heart and allowed me to take part in my treatment..And if medical marijuana is legal in your state you should be allowed to try it also. That is all i can say right now as i am tired of typing. I wish you all the best . i send you loving, healing thoughts, energy and prayers .x0x0x0x0x0

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Thanks Suzie - because I am part of an HMO, I can't initiate contact with specialty doctors - my primary care has to do that, and I get the specialist I am assigned by the system - again, I can't "shop around" so to speak. There aren't independently practicing Drs who take my insurance, because I am tied to the HMO system / and HMO hospitals - where other docs don't have privileges. The benefit of the HMO is I know exactly what I pay for everything, but, the detriment is that I don't get a shop around option.

Actually in my state marijuana is legal even for recreation - so post baby (not enough studies available for my to feel comfortable taking it while TTC/pregnancy/BFing) I will look into doing it just outside of my doctor to see if it helps. I already see a chiropractor outside of my HMO, because I don't have "in network" coverage - and there is no coverage out of network, so I am not against going around him - I just wish I didn't feel like I had to.

Thanks for the response!

Beth

4

1, you need a new doctor, immediately. 2, it sounds like fibro, but it also sounds like u have something else going on. fibro fog, and fibro fatigue can be a real doozy sometimes!!!!! sometimes it hits me so hard that I have to have my mom watch my son so that I can sleep, which leaves me feeling terrible, but believe this or not, my son understands when mommy feels like this. 3, i dont know any of that one i'm sorry!

Get yourself a new doctor like, today! Seriously! <3

5

2. I have a primary care, neurologist, gastroenterologist, neurosurgeon and a radiology oncologist besides my pain management neuro and physical therapists....they are all on the same page because everything affects everything and my history and present care has to be considered by each caregiver. It is important and I always ask at the end of a medical visit for the notes on the visit be sent to primary as well as other caregivers that it may concern.

1.I have not a complaint one with any of my caregivers and you should tell your current md to go kick rocks...but maybe before, ask for specific referrals and have a concrete valid reason for each referral that you ask for. I remember hounding my NP for a ENT referral and she downright refused because..."theres is nothing wrong with your ear that I can see, what would I say the reason is" I finally got through by saying "how about PAIN! I no longer see that NP after I found out that she diagnosed me with somatization disorder. Boy would I ever love to shove some diagnoses up her nose!

3.Not tried any of these. What I did want you to know is that I smoked pot all during all 4 of my pregnancies. Cannabis depletes Vitamin C in your system and my midwife told me as long as I chewed a lot of vitamin C I'd be fine. I had 4 very healthy kids ranging from my first weighing in at 8# 7os and my last tipped the scales at 9# 3os so they were not underweight babies by any stretch. Personally for me I use medibles more than smoking or vaporizing because most of the time it's for the pain rather than trying to take your mind off of pain which pot does a great job of that as well...but by ingesting cannabis you get nothing cerebral it's all body medication and it works very well for the burning, aching, deep bone pain that makes ya just want to cry and give up. Pot helps that.

Sorry I mixed up the numbers...it's a fibro thing ;o)