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17th-Sep-2015 11:04 pm - Nutrient IVs and Transfer Factors
bitstrips, flying
The doctor who is treating me for my Fibromyalgia (and I have EBV and other viruses) suggests that I try nutrient IVs that her office administers. It uses high doses of glutathione, magnesium, B-vitamins and some other things that I can't remember. Has anyone had this done before and did it help you feel better?

She's also suggesting the Transfer Factor system from Researched Nutritionals to address the viruses specifically and to increase immune function. Has anyone tried that and gotten relief from it?

Also, I will say that since I've been seeing her (started in Feb of this year), I've been feeling a lot better. She has me on thyroid medicine (she thinks fibromyalgia is a full-body manifestation of hypothyroidism), which has helped a lot but I think my dose needs to be raised a bit more, but she's hesitant to do that. She's been working on increasing my methylation and mitchondrial energy as well. I am taking loads of supplements and eating a mostly paleo diet.

This all may sound like mumbo-jumbo, but something is clearly working. If anyone is curious as to what exactly my protocol is, let me know and I will write it down. Also, please let me know if you've tried IVs or transfer factors.

25th-Apr-2015 08:32 am - New to Live journal
Im new to this place and hope to connect with others. I currently work as a Rape Crisis Counselor and DV advocate. I love helping women in crisis and giving them some hope that they can heal, it may take some time but they can make it through this. Im a mother of five girls and now have 10 grandbabies. I love the ocean and collect sea shells.
Today I could use a massage!! In a lot of pain.
8th-Aug-2014 09:15 pm - Butrans
benson and stabler
Does anyone have any experience with Butrans patches? My doctor just prescribed them for me, but I'd really like to hear about first-hand experiences so I know what I'm getting myself into.
Santana Landslide
After that horrible winter I have terrible decompression pain, mostly below the waist.

When does it end?
7th-Feb-2014 04:17 pm - Mattress Chat!
dead parrot
Hello fibro friends!

Since I'm overdue to get a new mattress anyway, I thought I'd ask and see if any of you have found a particular mattress has helped your pain and/or sleep. I've heard Sealy Tempurpedics are good but they're freaking expensive. I'm hoping to spend not too much but I'm open to costlier options if they help.

Thank you in advance!
29th-Jan-2014 10:27 am - Gluten free?
bit, avatar, silly
Forgive me if this topic has been brought up before, I was wondering how many people on here have tried the gluten-free diet? And if so--did it or does it work for you?

I tried it a couple of years ago and it didn't really work, but I think that is because I wasn't vigilant enough and I replaced too many wheat carbs with their sugary/over-processed substitutes. If I try it again this time, I will try to watch/limit sugary starches and increase vegetable/protein intakes (which is always good for health!)

What are your thoughts?

Gluten-free is it a fad or a legitimate treatment for fibromyalgia?
26th-Dec-2013 07:57 pm - changing meds
Bubba Gumps Mud Pie
I have been having rough winter and I am changing meds. I can't take lyrica. What works for you ? I am frustrated and need suggestions! Thanks!
26th-Dec-2013 03:05 pm - fibro pillow talk?
dead parrot
Greetings to all my fibro friends.

I am in the market for a new pillow in hopes that I will wake up less achy.

Any suggestions of what make of pillow might help are VERY appreciated.

Happy Holidays!
12th-Oct-2013 06:54 am(no subject)
I developed sciatic pain in both legs yesterday. I was also having a hard time getting enough air. Low blood pressure and circulatory issues (this caused a joint to die in my foot resulting in an eventual replacement in the early 90's) are part of my life. Diagnosed with FMS 2-1/2 years ago. IBS and TMJ are my close companions.

This morning I started a search for dual sciatica, as I had only thought it happened in one leg. Bilateral sciatica is a new term for me. Swell.

This is my question: I came across this - http://www.cure-back-pain.org/ and this http://www.amazon.com/The-Great-Pain-Deception-Medical/dp/0615462219/ref=wl_mb_hu_m_3_dp, and I wondered if anyone had any experiences or opinions on this concept.

The idea being psychosomatic. Mind-body connection. As a yoga teacher of 9 years, I firmly believe in the connection. I just never really followed this exact trail of information before.

The word psychosomtic is a stigma-word, but I don't buy into it. Just like I don't believe 'selfish' to be a bad thing. Selfish is a neutral word. We need to be moderately selfish so that we have more energy to be selfless.

Is my pain all in my head? Well, of course it is. Brain chemistry. I'm not going to get all defensive on that aspect. Am I suppressing emotional pain? Oh yeah, absolutely. The too-often trio of abuse for countless people - sexual/emotion/physical. Am I overly sensitive to life in general? Yup. My Momma always said "you're too sensitive". I always thought the world was 'too INsensitive'. I wish more people were sensitive.

I will probably get this book just to explore the idea. The mind IS very powerful. It is also tricky and sneaky. It is like dealing with a corporation - too many departments not knowing what the other is doing ;)

As always, life is one great big exploration ...

18th-Sep-2013 12:30 pm - Update from the pain doctor
I just realized that I posted on my private journal, but I forgot to post here. Last week I went to see a doctor who specializes in treating CFS and Fibromyalgia. Based on a two hour interview with me and reviewing my lab tests, he does not believe that I have fibromyalgia.

I'm bummed in that I would like a name for what I have, but I am also relieved because I don't have a chronic condition. Well, I do, but I am just not as sick as people with fibromyalgia are. He thinks I just suffer from chronic widespread pain and hypersomnia, without the other bits of fibro. It may or may not be attributed to depression.

This is from the letter he wrote to me after the appointment:

The problem you presented was of chronic widespread pain, or "CWP," for many years, but probably preceded by exhaustion and daytime sleepiness which goes back to at least your early teens. Both those symptoms, pain and exhaustion, evolved along with the stress of growing up in a family overshadowed by alcoholism, and your own depression that developed during your college years.

Various diagnoses for such a condition are easily ruled out by careful attention to your history and exam findings. This is not chronic mono, lyme disease, hypothyroidism, etc. I think "fibromyalgia" is a misleading label for it, because your condition lacks some of fibromyalgia's hallmark features of "axial pain," extreme morning sluggishness and malaise, "brain fog," prolonged exhaustion after minor exertion, and altered daily energy rhythm. Moreover, your widespread tenderness to pressue, measured by a dolorimeter, is quite minor. Similar considerations make Chronic Fatigue Syndrome an unhelpful label for your condition.

I think you most likely have a constitutional need for more sleep than most people, hence have reduced reserves of energy during the day. This may be interwoven with your tendency to depression: they often go together. The CWP follows from this, as poor sleep from any cause quickly produces widespread pain. Such a condition is not illuminated by sleep studies, like the one you had. You have had the other usual lab test and these have been unfruitful except possibly the vitamin D test (see below). I do not think that further lab tests will be helpful.

(Although I do feel like I have brain fog and a few other things, but again, not as bad as they could be). He issued me a list of recommendations and sent me back to my doctor. He says he doesn't need to see me.

I'm still processing what this means for me long term. Without an actual label of anything beyond: pain, fatigue and depression, I feel like it will be harder for people to take me seriously, especially medical providers and insurance companies. I also wonder if this could be the onus I need to leave my job and try the work at home part time like I have been thinking about for a while now. His first recommendation for me was:

The most obvious response would be to seek a job which would allow you to sleep longer hours, and to set your own work schedule (as you may function best with a wake-up time that doesn't fit with usual office hours). Work that's part time, and/or is mainly from home, might do this. This is of course a gamble: it may help or it may not. But it should be a serious consideration, especially if you have other reasons for considering a job change.

He also recommended getting more exercise, preferably swimming, and trying other supplements or medications, with the caveat that apart from exercise, none of them work for everyone and that I should only continue on a regime if it is helping.

So it is what it is! If anyone is in NC and would like his name and contact info, I'd be happy to share.
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