I'm not sure how to keep this simple, so bear with my ramblings... here's what happened at my two doctor appointments yesterday:
Lupus and rheumatoid arthritis were ruled out - yay!
I have MAJOR problems with my autonomic nervous system - boo!
Okay... so here's a little bit of physiology regarding my problems:
The autonomic nervous system consists of 2 parts:
- parasympathetic nervous system (PNS) - "rest and digest"
- sympathetic nervous system (SNS) - "fight or flight"
During sleep, the PNS is activated and it helps to restore or "recharge" your body by maintaining basic, yet essential functions:
digestion and absorption of nutrients, restoration of the immune system, support of the production and release of hormones, you know, all the "rest and digest" functions that are essential to keeping your body going each day.
Well, my body pretty much completely FAILS to activate the PNS at all during the night. A normal person should experience a 1763% increase in PNS activity during sleep. My test results revealed that I had a 87% increase. Ha!
No wonder I've hardly had any energy and have felt terrible the majority of the time for the past 7 years. My poor body hardly gets a chance to "recharge" each night. I'm missing out on the majority of restorative sleep night after night, which means I have little chance build up and replenish energy reserves.. For years I've felt like I'm surviving off of little emergency bursts of adrenaline, and well, it's true - I have no reserves, so I'm pretty much solely depending on help from my SNS 24/7. It makes me think of a little hamster frantically running in its wheel all the time without every getting a break :)
So, to sum things up, basically there is a major imbalance going on in my autonomic nervous system, which is a common problem associated with fibromyalgia. An overactive sympathetic nervous system, and an under-active parasympathetic nervous system. This can be a huge contribution to the severe fatigue and pain and numerous other difficult symptoms that fibromyalgia patients suffer from.
It's not known exactly what causes this imbalance in the autonomic nervous system, as the root cause(s) of fibromyalgia is unknown, but now that we have found something that is clearly "broken," we can at least work to manage it and thus lessen the frequency and severity of future flare ups. Praise God for some answers!
Management will include:
- using biofeedback to train my nervous system to function properly (lots of times doctors just prescribe drugs to help with sleep issues and pain, so I am thankful that my rheumatologist wants to try this approach first)
- pain medication for those days that are especially bad and I need to be functional
- various vitamins, herbs, amino acids, and other supplements to support my nervous system
- supplements to help boost my adrenal function
I'll continue to deal with my food/environmental allergies and chemical sensitivities as well, as they are other likely factors that aggravate and trigger my flare ups. So, I'll continue to go without egg, gluten, and soy (and a few other random foods). It's a bummer, but my doctors agree that it's a good thing to do for now.
I'm very pleased and thankful with how well my 2 doctors have worked together in such a complementary fashion and how they both want to keep me off of drugs as much as possible. I have an appt on Monday to talk more about the biofeedback thing with the rheumatologist and THEN, I fly home to my beloved that night (yay!!!!).
Well, I am exhausted, so that will have to be all for now. It still blows my mind that it has taken 7 years to figure out that this is going on. Crazy. I am overwhelmed by everything I have learned and have much to research, but immensely thankful that we've gotten some answers and that it's stuff that can be managed somewhat.
If you have read through this entire long, rambling post, you are very kind :) Spencer and I are incredibly thankful for and appreciative of your prayers throughout this difficult time. I still am feeling quite awful, struggling with immense pain and fatigue, and it will take time to see results from the treatment, so your continued prayers are definitely appreciated and humbly requested.
My, what complex and amazing bodies we have, eh? Reading up on the nervous system sure has been a neat reminder of how wonderfully God has designed us!
Met in junior high, enjoyed friendship during high school, and fell in love and married as college students. Enjoying life together in the Pacific Northwest while Spencer finishes school. Learning how to cope with Lyme Disease. It is our desire to honor and magnify Christ in all that we do.
goodbye, Petrova!
14 years ago
12 thoughts:
I don't think your post is rambling - I actually found it very interesting.
You are truly blessed to finally be getting to the bottom of your problem.
And also to have such wonderful doctors who are doing so much to help you - and as you say without drugs if possible.
Yes, our bodies are very complex.
Amazingly and wonderfully made :-)
I am expecially interested as I have adrenal exhaustion and what you have said about the PNS is fascinating.
I knew about the SNS but not the reverse.
I am also very interested in the biofeedback - I must research more on that.
Thanks for sharing :-)
I am so glad to hear that they have found out what is "broken"
I will continue to pray for healing for you but it's so amazing to hear that you will be able to take some steps toward energy and relief :)
God bless :)
*Abigail
p.s. i'm also excited for you that you get to be back w/ Spencer you are both in my thoughts and prayers :)
Praying for you! I think you explained it wonderfully. So glad you get to see Spencer soon!
Melody thank you for writing that all out! It's so good to be able to understand the details of what you're going through. I am so THANKFUL you have gotten some answers! Praise God that He is bringing you to doctor's that seem to know what they are talking about. I will be pray with this new knowledge that you will get the proper treatment and that you will be feeling well soon. Back to your hubbie in just a few days! Hooray!
For one, as far as long and rambling post go, that wasn't. For all the information included it was quite to the point. I am so glad to hear some reasons behind the rhymes and will continue praying for the every day strength and every night rest! Hopefully once you can start building up the base of health, your body will be more tolerent of the other issues. Thank you so much for taking the "spoons" to write!
Thank you for the update, Melody. I am so glad you found some answers to help you on the way to healing! I hope you have a safe trip back home to Spencer. :)
Very cogent, my dear! I never stop learning things from you!
I'm glad you get to be with Spencer soon, but we will miss you!!
da mom
Love you, dear Melody. We'll always be here for you and available to do anything we can to help.
That was a great explanation of a very complicated condition, Melody. It makes me so sad that you have been pushing yourself along with such depleted reserves all these years. The treatment with bio feedback sounds promising. We will pray that you are able to master its use quickly and that you will finally be able to truly rest. We are thanking God for the physicians who have been able to see your problems clearly and make recommendations that are consistent with your feelings about the use of strong drugs. Glad you and Spencer will soon be reunited. That in itself will be good medicine. Love you!
Praise be to God! and thanks to the helpful doctors. Biofeedback has been around a long time, and I'm glad it's still being used. Your aunt S has had fibromyalgia for a long time & is managing it well. It's helpful even to have a name for what you have been dealing with. We'll continue to keep you in our prayers. We rejoice that you get to be with your beloved and also that your parents have been so helpful. With love, G Betty
Thank you so much for sharing your story and everything you're going through. I appreciate being able to read/hear what you've learned as it's helping me get some ideas.
(We have a mutual friend in Monica G and she gave me your blog link.) I too have Fibro (diagnosed in Jan, symptoms for over 2 yrs and self-diagnosed about 9 mths into it).
You are a blessing!
Thanks for the explanation, Melody. I've never heard about an imbalance of the PNS/SNS related to fibromyalgia. Very interesting. I'm also glad to hear your doctors are working together and are trying non-pharmaceutical approaches. :)
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