Topics: Our new location, finding doctors, concierge medicine, medical marijuana, genetic testing for prescriptions.
Thank you to everyone who made it out to the new location. We had a great turnout and I was happy to see you all found it just fine.
I really believe the North Domingo Baca Multigenerational Center will be a wonderful place for us. Again check out their newsletters and see all they have to offer. Please consider getting their yearly membership which costs $13 and can be used at any NM Community Center (this isn't a requirement to attend group sessions just a strong suggestion) In the near future I would like to meet here possibly for game nights or other social events and at that point you would be required to get a membership to join, I think $13 is more than fair. Think about it.
Here is a list of their class descriptions which range from workouts to arts, dancing and education: http://northdomingo.weebly.com/class-description.html
Finding Doctors:
I know that it is a challenge to find a doctor that will "treat" fibromyalgia, but please don't give up because they are out there. In the next coming months I will be compiling as much information about those options as I can but if you are unhappy with your current provider than see someone else and please don't forget to tell us the details so I can shorten my to-do list.
When you call to ask a doctor if they treat fibromyalgia, keep in mind what your goals are. Maybe write a list of questions before you call.
Are you accepting new patients? Or can I be referred to you? (Sometimes you can bypass new patient by getting a referral) you can ask if there is anyway to see a doctor other than being a new patient, they might tell you.
What insurance do you accept? and if you are desperate to see a specific doctor but they don't take your insurance you can ask them if they will accept private payment (you can sometimes get a discount if you are willing to pay cash upfront, you can also make arrangements with billing) if you have Medicaid there is a way for doctors to accept and it's called limits (I don't know a lot about this-yet but it's above what Medicaid pays and I think it requires an agreement but it's doable.) look it up or call a rep for help.
Do you treat Fibromyalgia/chronic pain?
If you want to know if they prescribe opioids, ask. If you don't feel comfortable asking that you may also ask do they have a standard protocol for treatment and are they willing to prescribe pain medication if initial treatments fail?
If they don't treat pain or if it isn't the way you prefer it's ok to ask them if they know a prescriber who does.
you can only know what you ask, they won't likely offer anything to you, so if there is something specific you are looking for it's up to you to find out.
If you get a person on the phone who doesn't know the answers to your question ask them if they can direct you to someone who does and if they need time to respond ask them to call you back.
I'm sorry to say this but treating fibromyalgia is hard work and most of the work is done by you. You have to define your own treatment with a handful of vague and mostly unhelpful directions, it takes a lot of trial and error and if you are lucky and dedicated you will come out the other side with a team of helpers and a more manageable lifestyle.
I know that hardly sounds like a glowing review but until they know the why if this thing, manageable is all we've got. Don't let that discourage you. We are unfortunate pathfinders, the next wave needs our research.
Concierge Medicine:
I will do a longer much more involved post on this after some more research and I think it will be a topic for our next meeting, but for those who were there today this is the group I'm looking into:
https://functionalfamilymedicine.net/services-fees/
Concierge medicine provides a more personal relationship with your primary care and since they don't accept insurance they don't have to jump through the same hoops.
Medical Marijuana:
This could be a running topic considering the amount of interest, I have no personal experience with this because as it stands I have a contract with my doctor that excludes marijuana use. I personally think this is an excellent avenue to consider. Here is contact information if you are considering medical marijuana
I know that right now we are seeing a lot of resistance to painkilling options for fibromyalgia, and there is definitely no magic bullet, but if something helps you more than hurts you I think you should fight for that option. There is a lot of stigma associated with these medications and maybe or maybe not with good intention. There are protocols and then there are people and a one-size-fits-all approach doesn't work.
Bio-genetic Testing Pharmacogenomics, DME Panel:
We talk a lot about medications, side-effects, and chemical sensitivities. Some of us are genetically built to metabolize medicine fast, or not at all. Sometimes medicines that should make us sleepy wake us up, sometimes medicines doctors say have zero side-effects put us down for days. your body chemistry plays a huge role in how effective your medicine will be. There are ways to test these things with just a cheek swab so we can maximize their efficacy and minimize their risks. Ask your doctor about it. Here is some more info:
http://www.iversongenetics.com/dme-genotype.html
If you are exceptionally sensitive to medications this may be a way to determine what would work for you without going through them all, it may even help determine if something you have tried would work but was at the wrong dosage to be effective.
Don't give up, I know it's hard, frustrating work and I know how desperate you are for any relief. This is an endless battle but I know it is possible to feel better than you do. Don't hate me for saying so, take my advice, or don't, but know that it was hard won and with the hope of making your life just a little bit easier. I've been in that hopeless dark place and I won't lie and say I don't remember what it looks like because some days it's still pretty dim, but it is possible to manage your moments and they add up. And when you can even if it's only for a second, let it go.
I don't think the "letting go" is some major relief that just happens instantly, I think it happens in bits and I think just because you let it go one moment doesn't mean you will in the next, it's easy to let something go when it's not on your mind/body it's the letting it go when it is that's hard. Practice it and don't beat yourself up for not getting it right just don't quit trying.
It's not easy and I say this with intention: I'm sorry.