Celebrity Fibromyalgia

The headlines today say that Lady Gaga has Fibromyalgia. I am truly sorry that she does, but I’m glad she let us all know.

I think that people who have Fibromyalgia need champions. Not only to teach the world that this is not some unusual disease, and that lots of people you know may have it, but to teach those of us with Fibro that you can have Fibro and still be a Star, or an actor, or an airline steward, or a nurse, or a mom or whatever you want to be.

This article lists other famous people who have Fibromyalgia.

Jo

The Nicodemon rears it’s ugly head

In a Fibro Facebook group I belong to, several of the participants are confessing that although they are very sick, they smoke.

I smoked for many, many years. I discovered when I finally quit that nicotine had been helping my ADD and my Fibro Fog. It took almost a year for the fog to lift after I quit. Turns out, nicotine is a powerful, but dangerous Nootropic.

This article explains more about nicotine as a nootropic. If you go here, this info is from a Fibro open forum, where lots of folks weigh in about how they feel about smoking.

In my mind, nicotine has so many negative impacts on our bodies that I would never start using it as a Fibro therapy. Some people can take or leave nicotine, but for me, one puff and I am addicted again. Quit as soon as you can and find other ways that work for you to fight the fog.

j

P.S. Speaking of smoking, I am seeing LOTS of advertisement for Low Dose CT Scan for former and current smokers. This is the only way to accurately detect early stage lung cancer. Has anyone used this? I’m going to talk to my doctor about it at my next Annual.

P.S.S. The Facebook group mentioned above is a closed group. You must be approved y the Admin to join. If you have Fibro, or support someone who does, consider joining.

Bucket List, next up, Victory!

Wow. I have taken a step I never thought I would get to take. With Fibromyalgia, Migraines, Arthritis, Metallosis and bi-lateral hip replacements, I never thought I would get to try something like this ever again.

I have started the USA Fit Marathon Walking class! Yep, 22 weeks of training until I walk the Austin Marathon in February. The class is official, but the marathon itself is not. I will register for it on September 10th if nothing changes by then. I’m using the time between now and then to make sure that this is actually possible.

I had become almost immobile over the past year. Even small amounts of daily exercise resulted in terrible fibro flares, causing pain and fibro fog. Even while dealing with that, I was wrapping my head in ice and taking meds with bad side effects to fight the next migraine. The fibro fog was so bad I was considering quitting work and filing for disability, a severe hardship to my family, but it was so bad that driving, thinking, managing people and designing were becoming impossible. Home wasn’t much better, and my spouse took on more and more responsibility with the household and our teen son, and I faded further away.

Then came the day for the last ditch effort to get better. My search started with a way to improve brain function. I could deal with he pain, I had for years, but the reduced cognitive function was going to destroy me. Unable to think straight, unable to participate in so much, I began to sink into a depressed state as well, almost giving up. I began to search everything about brain function, dementia, Alzheimer, ADD, and anything else I could find. It was hard. Hard to understand the science in my condition, but I started figuring it out.

July 6th, 2017, just a few short weeks ago, I started a strict Ketogenic diet. It was hard at first, seeming to get worse the first week with what they call Keto Flu, but it passed. This diet extols the benefits of improved brain function, and I wanted it to work, bad! So far, I am very happy. I have done other things too to improve my symptoms, and am in the process of writing everything up and calling it Jo’s Fibro Protocol. I’ll post it here soon.

I am pinching myself now, because this is a dream. I am doing the impossible. I am walking 3 miles a day, and doing Yoga and Pilates. I am going out in the evenings with my family. Saturday, I walked three miles and did 20 minutes of fit yoga, an hour and a half of movement, I did chores at home, took an hour long nap, did more chores, made dinner, and then went with friends and family to Dave and Busters. We were out until midnight.

It did not cost me my entire Sunday and Monday from the inevitable fibro flare. I got up Sunday, did more chores, walked 2 miles and was active the rest of they day, only collapsing into be after a very satisfying Game of Thrones! Today is Tuesday, and I still feel fine. Eager to walk my three miles tonight.

Fibro fog is not yet gone, but it is much better. I can think again! I’m getting better quality sleep.

I am in a dream now, and almost scared to say this, but I am getting better! I want you too as well!

Peace, jo

Magnesium-L-threonate

Magnesium-L-threonate is a relatively new thing, at least to me. It’s a new form of Magnesium that improves brain function. It’s not thought to improve brain function, it has been proven to improve brain function. As someone suffering from Fibro Fog, I am desperate to try this form, and will order it soon. I’ll give you all the feedback I can to help you decide if it’s right for you.

Here is just one article that I found, there are many, just google Magnesium-L-Threonate and scroll past the ads.

J

Apples anyone?

This is me, the apple shaped one on the left. My apple wasn’t that big, but it was growing. I was 30 pounds overweight (now 20 lbs overweight).

My doctors didn’t tell my I had Metabolic Syndrome, but I did.

Metabolic syndrome is a cluster of conditions — increased blood pressure (yes, been taking BP meds for years), high blood sugar, (99 consistently, always pre-diebetic), excess body fat around the waist, (the very first place I gain weight) and abnormal cholesterol or triglyceride levels (my total was always great, but by “bad” was always high).

This is helpful to know because it explains why at 55 and menopausal I have been unable to lose any weight. Week after week I starved myself on a DASH diet and exercised as much as I could, only to lose nothing.

With my Keto Diet, I am starting to see progress. My BP is coming down and my energy may be increasing (still holding out for more!) I have not had a migraine since I started July 6th.

Those few things are enough to keep me motivated!!!

Stuck like Chuck

Oh my. I had forgotten just how nauseous Savella makes me. Feeling dizzy too. Wow, I really am struggling to keep it together!
Here is a question. Normally, I would have a cracker and ginger ale, or a slice of bread to settle my stomach. What can I have that’s keto friendly?

I haven’t missed bread much, so haven’t felt compelled to make any keto bread, but maybe I should, at least for moments like this.

I did not eat any breakfast, just Bulletproof coffee. I made it without HWC today, just in case dairy might upset my stomach more.
I’m at work and deadlines won’t let me go home, so I think I’ll take a few minutes to go lay in the car.

Wish me luck,
J

Updates

Day 13 of the keto diet (171.6 lbs)

I had a man explain to me on Facebook last night that the diet was keto not Keto and that it didn’t matter what you ate as long as your macros are intact. He was one of those nice fellows whom everyone in the group adores and defended vehemently when I suggested that eating grains was not in line with a keto diet. The group follows him because he is a nice guy that tells them they can have grains and rice and ice cream on their keto diets. Anyway, he browbeat me until I quit the group.

The group was helpful at times when I had a question, but it was also frustrating with the number of people asking “Can I have this chocolate cake?” or “Can I have Pizza on Tuesday nights and not get kicked out of keto?” (as if it were a club). It was obvious that 80% of those that started asking questions had never read the intro material provided by the group’s admin. I looked for another group and found one more suited to my age, but haven’t heard back from them yet. I’m not sure that I need one anyway since my situation is so unique.

The Fibro gets harder and harder to deal with. I am drinking one bulletproof coffee and one 5 HourEnergy every morning to try and get fog lifted to get through the day. My focus is almost gone. I am still holding out hope for the keto diet. After I become fat-adapted (after 3-4 weeks) keto dieters have energy and mental clarity. If the keto can drown out he Fibro maybe I will too. I have every finger crossed for this.

If not…I am going to talk to my doctor about Memantine (Namenda) for the fog. If that doesn’t work….well, then we may be talking disability. I fear my cognitive ability has reduced to the point of not being able to do my job much longer.

I am also thinking of adding these two supplements to my diet.

• Omega-3 fatty acid
• Acetyl-L-carnitine

I also used to take Savella. I am going to start taking it again tomorrow. I remember it really helping long ago, but my stomach became intolerant of it, so I stopped. I’m willing to try the stomach again..anything to lift the veil.

Jo

Ketones and Coffee

Day 3 Ketogenic diet

I weighed-in this morning, and much to my surprise, I was another 2 pounds down. I think this part of the process is still shedding water weight. However, I am showing trace amounts of ketones this morning on the test strip, so I expect some of the weight loss to be fat soon.

I wasn’t hungry this morning, so I opted for Bulletproof Coffee from Whole Foods.

I also purchased Onnit MCT Oil to add to my coffee in the mornings. There is a ton of info on the web (look here) about MCT oil and Ketogenics so check it out. I’m a real rookie at this diet, so feel free to comment about your experiences too.

I am really hoping that two of the heavily promoted benefits of the MCT oil, mental clarity and energy, are effective for me and improve my fibromyalgia symptoms.

Have a great day!

J

Energy

As you will see by my soon to come updates, I have been working on me.

I am now pressing hard to work out daily, and to eat right daily. Yeah, I don’t always make it, but, you gotta try, right?

My spouse has had some major health issues this year, and was recently told that she was “this close to being totally disabled”.

This was a wake up call for me. I realized that I had a choice. I could do all I can to get stronger, to take care of myself so that I can take care of this family, or a could wither, struggling to take care of myself, much less the challenges she will face. My son is only a teen, and I don’t want to put him in the situation to take care of us both, so I had to stand up.

My game plan is to beat the Fibro, the arthritis and hip surgeries. To beat the migraines and the high blood pressure. I need to be strong enough to take care of a sick wife, to spend long hours in the hospital at her bedside, and still have the strength to smile through homework help with the kiddo.

Basically, I need to get my cape out of storage, get it ironed, and learn to wear it, full time!

I know lots of you do this very thing, day after day. You have ill spouses, special needs children, mothers and father who don’t know who you are anymore. You work your asses off every day to bring light.

I read your stories, I cry with you. I also learn from you.

I learn how to be strong from you too. Since I have started working out, I have met lots of strong men and women who’s stories would break your heart, and yet, they lift me up, and I learn how to live grace, and how to be the strength my family needs.

So, this is where you find me today. Let’s move forward together, stronger, smarter and healthier.

 

Neurofeedback and Fibromyalgia

So, I heard a tidbit on the radio about this, and wondered if anyone has been treated with this technique.