2017 – Melissa vs Fibromyalgia in Review

What a year! My second baby has been in this first year, learning to roll, crawl and, now, trying to walk. My first has been in this third year, learning and growing so fast.

I’m in a period of healing, that phase where you feel like things could get better. The low dose naltrexone (LDN) seems to be helping with stamina, pain and fatigue. I’m not sure how far it will go, but I am grateful for a renewed sense of hope.

Despite extended sleep deprivation due to the baby with reflux, I have coped excessively well. I’ve also had a separate health issue that drained on me for more than two months and I managed to cope and keep going forward despite it.

New Medicine

I began low dose naltrexone in April. After nine months and many dose varieties, I am holding at 4mg with improved stamina, slightly reduced fatigue and a slight difference in pain levels. I look forward to further improvements.

Supplements

MSM supplement has been a useful addition to my arsenal. It is supposed to help with muscle, tendon and ligament pain in addition to healing the gut.

Magnesium oil right before bed around my neck and shoulders. I’ve taken magnesium for a long time, and it’s nice to not have to take it in tablet form.

Moringa powder provides 18/20 amino acids in addition to being a good source of iron and other nutrients. I am not very good at remembering to take it as it’s best taken with juice or in a smoothie – I dislike juice and I usually share smoothies within my three year old.

Exercise

After dealing with symphisis pubis disorder for several months after having Wyatt last December, I am pleased to be walking 20-30 minutes a few times a week (it’s a time thing with two small children, I’d love to do it more). I’m also back to my sun salutation sequence whenever I can.

Work

I’m looking at going back to work and am trying to find something that won’t demand too many hours, too much energy. I am looking forward to it.

A life goal
I accomplished a life goal when I published my book Fibro Mama: Pregnancy and Fibromyalgia. Since I was a young teenager, I have loved writing. When I wrote my life goal list up in my early twenties (doesn’t everyone do this, write it up physically?), publishing a book was on there. As I researched and shared my journey with pregnancy for the past four years, my mission became to help even one person not feel so alone in this vulnerable time. Now that I’ve felt some concrete results of the past several of real work on my health – I’ve compiled a large list of things I do to manage my illness, and I will be writing about this in a book due out early next year, Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue & Insomnia 

 

It’s very exciting, I’m so glad to be able to share this journey with you.

I hope you have a restful and lovely Christmas holiday period and a happy New Year.

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MSM Supplement: A Review

MSMSome of the links are affiliate links, I may make a small commission at no extra cost to you. I only recommend what I believe in.

MSM (methylsulfonylmethane) is an organic sulfur-containing compound that is meant to help with pain in the tendons, ligaments and muscles.

Dr Axe outlines six benefits of taking MSM, including joint pain, digestive problems and muscle pain and spasms (a biggie for me): “Research suggests that MSM can act like a natural analgesic, helping prevent and treat muscle aches and pains, throbbing and swelling while improving range of motion and mobility.”

The article goes on to state that, “MSM also restores the flexibility and permeability of cell walls within muscles, which means nutrients can pass through the tissues more easily, facilitating repair work faster and removing lactic acid, which causes that “burning feeling” following exercise.” This is great for people with Fibromyalgia, who often feel greater post-exercise pain – I often get severe pain in my lower body for up to three days post exercise, if I have overdone it.

An article on the Shawn Stevenson Health Show website includes detoxification and increasing energy as other benefits of MSM:

“Digestion is the biggest energy requirement of the body (Approximately 70-80% of your energy is spent on digestion each day). MSM increases the absorption of nutrients so that the energy expenditure on digestion is vastly reduced.” Which is good news for a person like me who doesn’t tend to take the nutrients from food efficiently, using iron as an example, despite a healthy level of iron rich foods I cannot keep my iron levels up without regular injections. Also, any efficiency in energy is a bonus for people with limited energy levels.

MSM and Me

I began taking MSM (this is what I used) in July as this was when I began to suspect the pain in my neck was actually Myofacial Pain Syndrome – painful, severe trigger points that recur no matter the treatment. Trigger points are usually considered separate to Fibromyalgia but there are some doctors who believe them to be part of it (like Dr Liptan).

After a Google search for potential side effects, potential benefits and checking any interactions with my current medicines (amitriptyline and low dose naltrexone) – I decided to try it.

It took about six weeks to build up in my system. At this point I noticed a slight reduction in pain, perhaps one pain point on average in my neck, which is actually a big deal for me. This helped reduce the number of severe headaches and I didn’t have any other pain relief for several weeks.

I began with tablets, they were big! I had to take one tablet two times a day, and it was difficult swallowing them. So when I finished the bottle, I ordered a powdered version. During the wait the symptoms returned. It took another few weeks to feel the benefit of the powder. It is much less of a burden to take the powder, half a teaspoon dissolved in a cup of water (which I skull) is really easy for me.

A minor medical event, separate to the Fibromyalgia occurred in August which set me back. But I am going to keep the low dose naltrexone and MSM going for the year’s experiment and I have just added moringa powder (which I will report on later) – moringa is a good source of protein and amino acids, as well as iron and magnesium which is said to work well with the MSM.

4 Lessons I have Learnt While Living With Fibromyalgia

Lessons I have LearntAfter more than a decade fighting Fibromyalgia, I couldn’t imagine that the last two years could bring as much learning as it has.

I have stepped up the fight. I am trying Low-Dose Naltrexone and an MSM supplement at the moment. I am using yoga as therapy (targeted poses to keep my body moving). I am devouring research and books and articles about fighting the symptoms and the illness.

A large school of thought in the cause of Fibromyalgia, is that it is caused by underlying issues that need to be resolved. For example thyroid issues, Candida, viral infections, allergies etc.

Lesson one: Don’t be surprised, or discouraged if one avenue of potential healing doesn’t produce results.

Many Fibromyalgia bloggers/writers/doctors blame Candida overload for Fibromyalgia problems. They recommend cutting dairy and sugar and gluten and taking varying supplements. There are entire articles devoted to clearing Candida. Well, I have zero Candida in my system at the moment and my neck has been worse and the fatigue has been higher.

I also have “optimal” results in the usual blood tests (thyroid, iron, antibodies etc). All worth checking and noting that “normal” does not always mean “optimal”.

I don’t give up, I store this in my “don’t worry about it” column and move on.

Lesson two: Fibromyalgia is a massive undertaking of trial and error, which feeds into lesson three: you have to do the work yourself.

I have had precisely one doctor who is willing to listen to me, work with me and trial things with me in the 15 plus years I’ve been dealing with chronic pain. That Dr still doesn’t have a lot of avenues to offer me, but he is willing to let me trial things I research.

I turned up with research papers prepared to be persuasive about a trial of Low -Dose Naltrexone, he agreed immediately.

I have tried a multitude of things to fight Fibromyalgia. Physical therapies like osteopathy, chiropractic, massage and physiotherapy (neck traction and acupuncture needles in trigger points help me). Supplements like MSM, magnesium, multivitamins, iron, olive leaf extract, probiotics and a truckload more I can’t remember! (A helpful note here, using powders dissolved in water seems to absorb better than tablets for me).

Yoga, walking, stretching and swimming are helpful exercises that I enjoy. I have to modify for my neck and knees though. There’s also a clearly defined line that I must keep to, 25 mins of walking is enough, less causes pain in the lower body and more causes pain also!

Avoiding allergenic foods specific to me (bananas and dairy are occasional foods, corn and wheat are once per day foods according to my test). This was the one good thing that came out of hundreds of dollars spent on a naturopath. I trialed gluten-free eating a couple of years ago and found no effects while off or adding them back in. However, I do prefer non-glutenous grains like quinoa and millet as they have extra nutrients too.

There is a mind-body component. Meditation simultaneously helps me rest (I cannot nap) and teaches my central nervous system to calm down. Gratitude practice keeps me looking for the silver lining. Prayer helps sustain my hope (and hope is crucial, without that I’m done for). Colouring is calming and enjoyable. Reading is my favourite hobby and doesn’t require physical activity. You need hobbies and you have a right to enjoy these even with a limited energy envelope.

Almost every time I read a book written by a Fibromyalgia doctor, I have found that I have made my way to an approximation of their protocols myself.

This is all by time consuming, expensive, roller coaster of emotions, trial and error.

Lesson four is that you can do All The Things and still have Fibromyalgia.

Clearly I do a lot to manage my health as best as I can. I have learnt a lot and do a lot, daily. But I still struggle everyday with these symptoms. Mostly my neck and sleep. However, until a doctor helps me with my neck, my quality of life and my sleep will not improve. 

I have come a long way since I was struggling through the day, so sore I wondered how my body was functioning, so exhausted I was nauseas most of the day and only managed by holding on to the glimmer of hope that getting enough work experience would mean I could earn enough per hour to reduce my work hours. But there is more to go until I am healed and I fight on.