Healing Fibromyalgia Plan Questions
I received this question via email from a woman who bought my book. She agreed to let me post it here:
I am so glad to have run across your website and have downloaded your ebook. I can’t wait to start your plans and protocols. I am a 31 year old mother of a two year old.
All of my classic fibromyalgia symptoms started gradually last July. I have had every test imaginable. I see the chiropractor every two weeks, the massage therapist every 3 weeks, and get trigger point injections.
I have tried lyrica, but it only made me gain weight and didn’t help. I have had a brain MRI, neck MRI, and lower back MRI. I have had nerve conduction study tests and tons of labwork. The list goes on and on. We want to have another baby in the future, but I HAVE to feel better first.
My main complaints are the arm, leg, neck and back pain and stiffness. I also get lots of tingling, heaviness, and a loss of circulation feeling in my arms, hands, legs, and feet. I was also extremely fatigued, but since I have been taking extra D3 and iron, that has helped some.
I don’t get any sleep at night. Luckily, I am not depressed yet, but it is difficult to stay positive and function when you feel horrible ALL the time. I am also hypothyroid, low in ferritin, and have a bulging disc in my lower back.
Anyways, to make a long story short, I was reading over your materials and am very interested in the Guaifenesin Protocol, but I have a couple of questions for you before I go to my doctor with it.
I was reading about eliminating salycilates from my products/supplements and it seems quite challenging, but I want to try. I was reading some info (that one of your links directed me to) that talks about eliminating any oils, gels, or extracts with a plant name (besides corn, rice, oats, wheat or soy).
The vitamins I take have D3 (cholecaliciferol) which says as WOOD OIL. Is that ok to still take? I have found that many multi-vitamins have this ingredient. I feel that D3 is rather important as it helps with my mood and energy.
I also have horrible allergies and get allergy shots once a week. Is that ok? I that I am allergic to many plants, trees, grasses, etc. that they are injecting into me every week to build up my immunity. I was reading some info (that one of your links directed me to) that talks about how salycilates come from plants so I didn’t know if my allergy shots were still ok. I have been doing them for 4 years now and they have helped me tremendously. I would hate to get off of them and back on meds like zyrtec and singulair everyday.
I also have to use Nasonex nose spray. Is that ok? I know one of the websites had approved nasal sprays, nasonex wasn’t on there, but it looked like all of the others were OTC.
I also have to take synthroid daily for hypothyroidism. Is this ok too?
I really appreciate all of your help. I am desperate and just want to feel better again. I feel like this has robbed me of my life and I don’t think I can live in this type of pain forever. I am praying that this works and that God will heal me.
Thank you so much and I look forward to hearing back from you!
Thank you so much for emailing me. I say OH MY GOSH when I look at your list of things that are going on with you. I feel for you.
Honestly, the first thing I would examine, if it were me, is getting sleep at night. I would do everything possible to start getting a little more sleep – whatever you have to do. Why aren’t you getting sleep? Is it the pain, or you just can’t fall asleep? Do racing thoughts have anything to do with it? Does hunger ever have anything to do with it (like do you find yourself up anyway so you go get something to eat)?
It sounds to me like you are staying pretty positive and that is awesome, but I will be totally honest in that I think there is a huge emotional component to fibromyalgia for everyone. Was there anything else that started or came to a head for you last July or around that time? Is there anything that popped into your head that doesn’t seem related when you read this question?
As for the guaifenesin protocol – I have no doubt that it can help you. It helped me tremendously. The thing is, it’s not my protocol. The website that I referred you to is the website of the Doctor who started it. They run a list over there where you can ask these types of questions. You can subscribe to the list here and probably search the archives for immediate answers to your questions.
I also looked here and saw immediately that your wood oil is fine
One thing that I need to tell you though, is that in my experience, the restorative stretches and emotional work is just as important as the guai. The Dr. who started the guai protocol doesn’t recommend any of those things but in my own experience, they can all work in concert with each other and I think it is a mistake to only take the medication and not look at some things you can physically and emotionally do within yourself to become more relaxed and at ease.
I’d love to hear back from you about the questions I asked above, and do you mind if I post your question on my website? I wouldn’t put your personal infpormation on it but I think it could help others with the same questions.
Thanks and wishing you an ease-ful day Lisa
Thanks for responding. As far as sleep goes, my husband sleeps in a separate bedroom and gets up with our son in the middle of the night if needed. My husband snores so he has slept in a different bedroom for quite a while so I can get sleep.
At night, when I’m trying to go to sleep, is when my symptoms get worse, but I don’t have trouble falling asleep. I just have night waking problems…usually 3-5 times a night. I always go right back to sleep, but it is annoying.
Around the time that all of my symptoms started, I was weaning my son from breastfeeding. He was one on June 10th, 2009 when I started weaning and it took me two months (until mid-August).
My symptoms started late June/early July. This didn’t seem emotionally challenging for me and he did really well through the entire process. What seems to have taken a toll on me physically and emotionally was his napping situation. I would try to get him to nap twice a day for a long time and it was always a struggle and a challenge. Most days I would have to rock him 45-1 hour to get him to sleep and then he would only sleep 30 minutes….plus I would do this twice a day. I know this caused tons of tightness in muscles and put pressure on my bulging disc.
I would get so frustrated everyday trying to get him to nap. Now he is a great napper….thankfully. I also have low ferritin levels which I have read can mimic restless legs (and arms, I’ve read) syndrome. My husband and I were also hit by a man in a head on collision in Feb. 07 which I know took a toll on my body. The crazy thing is that my symptoms did not start until June 09.
I am going shopping today for salycilate free products and for some mucinex. I will definitely start the stretching and have already started on the emotional work.
Please feel free to post my question on your website. This is a horrible experience and I wish to help anyone and everyone who needs it. Thanks for all of your help. I’ll keep you posted.
Interesting. I don’t have issues with night waking anymore but I recently read a book called Sound Sleep Sound Sound Mind, 7 Keys to Sleeping Through the Night and the author suggests that sleep quality issues like waking up frequently have to do with emotional issues, and with breathing issues. One thing he suggests with the breathing is wearing those nasal strips at night even if you don’t think you have a problem with breathing at night – try it for a month and see what happens.
Reading through your tirals with rocking your son leads me to wonder if you have issues with your neck that aren’t apparent to you. The restorative stretches will help with that and the guaifenesin will too ..
.. but I’m wondering – where do you get the trigger point injections? Are they all in your back? I wonder if you have big trigger points in your scalenes and sternocleidomastoid muscles like I did.
Thanks for letting me use our dialogue on my site Lisa
Thanks! I will try the nasal strips. I did the stretches today for an hour and found them to be relaxing…I will keep it up. I started the guai today and joined the guaigroup online. I had typed some stuff about allergy shots and looked through the archives and found some answers. The only doses of guai I could find at the store were 400mg and 600mg. I asked the pharmacist if I could use the 600mg and use a pill cutter to cut them in 1/2 and he said no and to go with the 400mg. The protocol says to do the 300mg for a week first, but I can’t find that dose. Where did you find yours?
Also, about the triggers, I get them in my neck and all in my back (the scalenes, sternocleidomastoieds, trapezius upper and lower back). The first time the dr. did it, he said I was really messed up…I stopped counting after about 20 injections. I’ve had them 3 times and the chiropractor is recommending I have them done again. For a long time, I thought I might have had Thoracic Outlet Syndrome, but the neurologist told me it was very rare to have it in one arm, let alone two (this also would not explain the leg pain in both legs either). Thanks again for your help and correspondence! I truly feel blessed
I’m a bit concerned that you are starting the protocol based solely on my recommendation and what you have read of mine. I have to reiterate that this is not my protocol, and before I started it I read the book.
the book talks about dosages and fast acting and time-release acting guai. Time-release guai doesn’t come in 400 mg so you must have been looking at the fast acting (not time release). Time release has a white strip on it. You are NOT supposed to start with fast acting guai according to Dr. St Amand’s book and website.
What was the pharmacist’s reason for not cutting the pill in half? If he or she is not familiar with the protocol than he or she can’t advise you.
I cut the pills in half to get the 300. If I recall correctly this is what the book said to do but you’d have to read it to be sure. I really recommend you read the book if you are going to do the protocol. Dr. St Amand doesn’t recommend self-treatment ‘unless there is no other choice’ but if you decide to self-treat there is a lot more to it than just taking the pills.
I had tons and tons of trigger points too. I self-treat mine. I learned how with this book. You are lucky to have found a doctor who knows how to do trigger point injections, but I have to believe that self-treating is so much more effective because you can treat anytime you have an issue. You don’t have to wait for your doctor’s appointment. and I know that trigger points recur, so you can just keep treating. that’s what I do. I still get issues sometimes after certain things I do.
I’m glad you are feeling good about this that’s the first step for sure Lisa
I have already ordered the book by Dr.St Amand. I have started reading your ebook and doing a lot of the stretches too I will read the book and then start the protocol after I read it and see what it says. The pharmacist told me that you could not cut the 600 mg because they are time-released and that by cutting them they will be fast acting. He said you could do liquid guai (100 mg) every 4 hours for the same effect, but that would also mean waking up every 4 hours at night to take the guai. I will read the book and do what it says. I am also planning on getting the trigger point workbook. Thanks again for you help…..it means so much to me I will keep you posted!
Oh great. I’m so glad. I would love it if you ever wanted to update me on your progress and life Lisa
I will keep you posted Things are about to get a little crazy… *personal info snipped*
This might be way too personal a question, but I read in your ebook that your symptoms started after your pregnancy. Mine started when I started weaning my son. Did you breastfeed too and then your symptoms start or was it just shortly after you had your son? I was reading about a hormone called relaxin and how you make more of it during pregnancy and when you are breastfeeding.
I feel like my body went through so much stress (a car wreck in ’07, pregnancy, 55 hours of labor, all the rocking, waking up at night with baby, nursing for 14months, plus I was working full-time and finishing my masters while I was pregnant), but the relaxin helped me get through it, then when I stopped breastfeeding, it all caught up with me.
Don’t know if there is any correlation with that and I don’t know if taking relaxin supplements might help (vitalaxin). Just something I was wondering about. Still haven’t got my books yet, but I’m waiting patiently for them
Wow, ok, well, it will be ok I’m sure. You’re pretty aware and moving towards better feelings right now – just do your stretches as often as possible I’m sure that will help.
My fibro symptoms came in force immediately after my pregnancy. I nursed for a year, and then I don’t think they got worse after. I don’t remember exactly how it went, but I do think after a year I was getting a little better already or at least starting to define things that made me feel better and things that made me feel worse.
I definitely think emotional and physical exhaustion can couple and create fibro. And, if you are drawn towards relaxin, then I would have nothing negative to say about it. That was the biggest way that I found all the things that helped me. I researched and followed and tried whatever interested me that I had access too. Some things helped, some things didn’t.
If you do decide to try it, I would LOVE to hear how it goes for you.
My thoughts about fibro are there are 1000+ ways it can get started and 1000+ ways you can reverse it. If you find ANYTHING that works for you, that makes you feel better, that gets you to relax a bit and get a little happier and believe things will work out ok … then that is helping you get better.
You’re welcome, and thank you. Lisa
Highly Recommended: 30 Days to Feel Better From Fibromyalgia
Previous Post: Panic Attacks From Very Minor Thoughts
Next Post: Fibromyalgia and Brain Behavior Questions