Triggers That Can Worsen Your FM Symptoms

Triggers That Can Worsen Your FM Symptoms

Triggers are those things in our environment that increase our fibromyalgia (FM) pain, and they are not our friends. Some triggers are unavoidable like changes in weather, and some triggers can be avoided or changed, like the chemicals we use to clean. Let’s look at a few of these triggers for FM.

Weather: I always seem to know when bad weather is on the way because my pain increases, sometimes it increases very dramatically. Personally, it is the cold, snow, and rain that wreaks the most havoc with my pain and fatigue levels. Those are the days I get out my heated blanket and take more pain meds.

Chemical Cleaners: Many years ago I switched to natural cleaners because the smell of products such as bathroom cleaners, dusting sprays, floor cleaners, etc., really bothered me!! I couldn’t deal with the smells. Natural, citrusy-smelling cleaners were pleasant, as well as effective. Even my bathroom spray is a natural orange-scented spray. J.R. Watkins makes great cleaning products that work well and have a mild fragrance.

Perfume: I purposely stay away from those stores that spray you with perfume when you walk in. Ugh! Strong perfumes and aftershaves just make me nauseous. I haven’t worn perfume in many years because of that.

Overexertion: Why is it we push ourselves to do things that we know we will pay for? Overdoing it is never good for us, but it’s hard sometimes to listen to our bodies. Walking too far at one time, doing too many errands in one day, doing too much on those days when we feel pretty good. All of those are triggers to more pain and exhaustion. It’s really not worth it.

Food: I know this is a touchy subject, because let’s face it, who wants to give up certain foods when we already give up so much, right? But I find certain foods caused me more pain, and maybe they do you, too. Foods such as: Gluten, MSG, sugar, dairy, simple carbs like cookies and some breads and crackers, food coloring, corn and other starch vegetables, nightshades like peppers, potatoes, and mushrooms, processed foods, caffeine, and fast foods to name a few. Be aware of how your body responds to what you’re eating, and be sure to drink lots of water.

Lack of Sleep: One thing I’ve found helpful for me is listening to quiet instrumental music at bedtime. I put it on a sleep timer on my phone and listen to it for about a half-hour. Or I listen to an audio book and put it on a sleep timer. It really relaxes me so I can fall asleep. Lack of sleep is definitely a trigger that needs to be addressed. Pain can keep us tossing and turning. Talk to your doctor about possible sleep medication, and increased pain meds at bedtime if you feel you need them to get a better night’s sleep.

Sensory Overload: Loud noises, bright lights, too many people talking, and strong odors all can be triggers. They can bring on cluster headaches, and just plain make me feel overwhelmed. I can’t stand the smell of nail polish, gasoline, or strong scented candles. I use lower wattage lightbulbs or dim the lights. I enjoy using essential oils in my diffuser as they can be calming as well.

What are some of your triggers? What changes have you made to accommodate them? Please share so others may benefit.

 

This was originally posted on www.fibromyalgianewstoday.com

My Chronically Ill Network

My Chronically Ill Network

I have made so many amazing friends on this chronic illness journey that God has entrusted me with. Would I have chosen this path? Absolutely not, but I trust the plans and purposes of my heavenly Father. We all need a network of people who understand our struggles and just plain get us.

I am involved in a few groups and found some great online sources, I’ll put some links here for you still that you can check them out. My hope is that you’ll find one or more that really resonate with you.

Resources:

Coping to Cash Flow

Fibromyalgia News Today

Fibromyalgia Night Owls 

Counting My Spoons

The Spoon Theory

The Chronic Illness Writers Group

But You Don’t Look Sick

Rest Ministries

Sick and Sick of it

My Restored Health

Seeking the Gifts of Fibromyalgia

Fed Up With Fatigue

 

Follow these people on Instagram:

@hurricaneinheels

@countingmyspoons

@lane_pietrylo

@kimfrederickson

@chronicblogs

@chronicallyboxed

@crazyspoonielife

My Facebook groups:

In Spite Of My Illness

The Konmari Method for the Chronically Ill

 

 

The Unexpected Ministry of Chronic Illness

The Unexpected Ministry of Chronic Illness

Before I was diagnosed with various chronic illnesses I would never have even given them a second thought. My life was very full and busy. I was raising children, active in church, and running my own business. I honestly didn’t really know anyone with a chronic illness.

I’ve been ill for over 15 years now. It was so scary at first because I didn’t know what was wrong and neither did the doctors for a long while. I was finally diagnosed with hypothyroidism, chronic fatigue, and fibromyalgia. My world had completely changed!

For the past 4 years or so I have spent most of my time in bed due to extreme, chronic fatigue. But I refuse to lay here feeling sorry for myself (although I certainly have my moments), I want to be used by God to support and encourage others, in particular other women.

For the past 4 years I’ve established online support groups, I’ve started a writing career to inspire others who suffer, and I’ve been privileged to pray for many. My desire is that God would continue to use me in whatever way He chooses.

I feel very blessed to have this unexpected but rewarding ministry. I’m humbled and honored to serve these amazing, strong, incredible women.

Physical and Emotional Intimacy

Physical and Emotional Intimacy

What used to be something that came naturally, more or less, now requires greater intentionallity. Chronic pain and fatigue can be a real downer in our continued pursuit of a healthy sexual relationship. Even though we want to be engaged emotionally, fatigue and brain fog can make it seem like we’re climbing Mount Everest.

Pain, fatigue, and some medications and/or their side effects can diminish sexual desire and perhaps satisfaction. Also, if our partner is acting as our caregiver, it can be challenging to relate as a couple. Setting aside some time to listen to some music, perhaps light candles, and generally set a mood for intimacy to occur can be helpful. As much as we’d like our sex life to be spontaneous, it’s not necessarily to be anymore.

I think we could all use some variety and playfulness in our relationships. It takes the stress off “performance.” Maybe using different scented massage oils or lotions (just not something strong if your partner is sensitive to smells), the above mentioned candles, and plenty of time to set the mood is what we might need. The end goal is what you mutually decide on. No pressure to perform in a certain manner also helps build emotional intimacy, and helps to deepen your bond.

Open and honest communication with your partner is key. Share your fears and concerns with one another. Share your expectations and limitations. If you are unable to complete the sexual activity, there needs to be a level of understanding and acceptance. This is just one more area of our new normal that needs some adjusting to.

Our weight gain or loss, loss of hair, decreased libido, inability to maintain certain physical positions all combine to create a seemingly hopeless situation. Recognize that you’re doing the best you can and give yourself a break!

Some of the many benefits of sex, according to Dr. Pellegrino, is how it “increases our body’s endorphins; it improves blood flow, removes toxins from cells, and boosts our immune system; it results in stretching and then relaxation of our muscles; it reduces stress; and it re-connects us emotionally and intimately.”

No need to rush things, but if this is something that’s been missing from your relationship, begin to slowly restore this vital part of your relationship.

Fibromyalgia and Essential Oils

Fibromyalgia and Essential Oils

Are you familiar with essential oils? Perhaps you’ve used them before for other issues. I want to explore how essential oils may be beneficial to those of us with fibromyalgia. FYI, they are not a cure, but they can help to alleviate some symptoms, even temporarily.

Since we each experience FMS in our own unique ways, I would like to suggest some oils and what their potential benefits are. If you have some experience with oils you’d like to share, please do in the comments. You may be helping someone benefit from your experience.

Essential oils can be used in your bath and body oils, as well as in a diffuser (releasing in the air) or inhaling them. If you want to use them to massage the skin, I recommend using a carrier oil to blend with the essential oil. The best, in my opinion, is fractionated coconut oil. It’s clear and odorless, it won’t oxidize, and it penetrates the skin beautifully.

If this is something you are interested in, I would recommend getting a good book on essential oils. The essential oils that are most useful in treating the symptoms of FMS are:

For pain relief – spike lavender, sweet marjoram, lavender, petitgrain, Roman and German chamomile, clary sage, lemongrass, helichrysum, peppermint, ginger and black pepper. Spike lavender with peppermint and helichrysum creates an anti-inflammatory synergy.

For stress/anxiety relief – rose otto, frankincense, clary sage, sweet orange, bergamot, grapefruit, ylang ylang, sandalwood, neroli, sweet marjoram, petitgrain, mandarin, lavender, rose geranium, tangerine, jasmine.

Fatigue is what often keeps us confined to our beds. Often as a result of poor quality sleep, so even when we get enough sleep, it’s likely that we never enter into the fourth stage of REM, which is the restorative sleep. There are a number of essential oils that help provide energy to get the body and mind going, such as Peppermint, Eucalyptus, Rosemary, Basil, and Geranium.

For a more peaceful sleep – lavender, neroli, jasmine, marjoram, Roman chamomile. Put some in a diffuser in your bedroom or put a few drops under your pillow.

For a feeling of harmony and safety – frankincense, lavender, rose, mandarin, neroli, helichrysum.

For headaches – lavender, peppermint, marjoram, Roman chamomile. Inhaling or placing a few drops on your temple or neck can be helpful.

For increased circulation – rosemary, ginger, black pepper, peppermint, lemongrass, rose geranium.

I love using my diffuser as well as inhaling them. You can keep them in your purse or desk to inhale when you need them. I also like using lavender oil on my pulse points, it’s a natural perfume and very relaxing.

IMPORTANT: Lemon oil should ALWAYS be used in diluted forms; otherwise, it can cause skin irritation, so use a carrier oil. Avoid the use of lemon when you are out in the sun, as it may cause redness and burning of the skin.

A long soak in a hot bath with Epsom salt is an excellent way to help the body detoxify, reduce stress, and minimize pain. Adding essential oils to your bath helps even more.

Just use 2 drops Lavender Essential Oil, 2 drops Peppermint Essential Oil, and 1 cup Espom Salt.

I would strongly discourage you from buying on Amazon or other site. Instead get good quality oils. The 2 best companies, in my opinion, are DoTerra and Young Living. Just google reps that live near you.

Fibromyalgia and Dizziness

Fibromyalgia and Dizziness

I personally have had bouts of vertigo, loss of balance and dizziness throughout my journey with fibromyalgia. It can be especially challenging for me when I have appointments. For example,when I go to the dentist I have them lower and raise the chair slowly and not lower it flat. Even still, I have to hold on to the counter for a minute once I get up. When I go to the hairdresser I wash my hair at home first, then she just wets it as necessary while she trims it. Laying back to get my hair shampooed will definitely trigger vertigo for me.

Vertigo is the sensation of the room spinning or tilting and is often accompanied by nausea. Only one episode of vertigo was actually bad enough to make me vomit. It can be caused by an inner ear imbalance. I typically experience it when laying on one side but not the other. I never seem to go more than a month or so before it’s back again. I’ve had the Epley Maneuver done and that relief lasted about 6 months. It was performed in an ENT office (ear, nose, throat). I have what is referred to as BPPV (benign paroxysmal positional vertigo). I can’t watch spinning things or fast moving objects without feeling nauseas and closing my eyes.

I have experienced lightheadedness accompanied by nausea, so unpleasant. That happens mostly when my IBS flares. Also, if I stand too quickly I will feel momentarily lightheaded. I have never fainted, but have felt close to that on numerous occasions. No fun!

Dizziness can also cause us to feel off balance. I’ve fallen a few times, so now I’m good at stopping and holding onto something solid, or sitting until it passes. I wonder if we are more sensitive to these symptoms because of fibromyalgia, do you experience this?

Unsteadiness is a type of dizziness that makes you feel not-balanced. When I feel this kind of dizziness, I feel like I could just topple over and fall down. It’s interesting that it appears to most often affect older people rather than the young. I can attest to that in my own life.

You could think of it like this: when you get off a roller coaster that has a lot of upside down loops, your brain is attempting to catch up to your body being away from the ride. It causes unsteadiness and potentially nausea. So unpleasant!

Some common causes of dizziness and/or vertigo:

After you have been standing for a lengthy period of time

When you go from sitting to standing

Climbing up the stairs

When you are in a warm environment

After you have been exercising

After you have eaten a heavy meal

After you have experienced a lot of emotional stress

Some medications you take

Feel free to share your experiences in the comments.

Can Fibromyalgia Be Hereditary?

Can Fibromyalgia Be Hereditary?

Did you know that siblings, children, and parents of someone with fibromyalgia are eight times more likely to get fibromyalgia than those families who don’t exhibit the disorder. It could be the result of a genetic tendency that is passed from mother to daughter. There may also be a hormonal component, which could explain why more women than men are affected.
The genetic tendency can be triggered by a traumatic event, such as:

a car accident

an extended hospital stay

an injury

surgery

giving birth

a viral infection
A stressful event such as:

a divorce

a death in the family

being in an abusive relationship
They will not necessarily result in someone getting fibromyalgia, but if you are predisposed, an event such as these, can trigger it.
Although my own symptoms began many years ago, they dramatically increased after the death of my father. Although there is not a specific gene, such as one for cystic fibrosis, there can be multiple genetic components that will predispose one to the disorder, given the right set of circumstances.
According to researchers fibromyalgia is 50% genetic and 50% environmental. In my immediate family, I have 2 daughters that have been diagnosed with fibromyalgia. One daughter was 16 and one was 22, although both showed symptoms for years. I was in my mid 50’s when I was diagnosed, but I’ve had worsening symptoms for years. My sister doesn’t have it, but one of her daughters does. Does it run in your family? I’m curious to know why it seems to be passed down to daughters.
According to an article on www.womens-health-advice.com:
“Four different gene variants are strongly associated with the condition. Some of the genes play a role in the nervous system’s response to pain and pressure. Others are the same genes associated with depression which is why certain anti-depression medications help to reduce fibromyalgia symptoms. Even if you are not depressed, you may be prescribed antidepressants as part of your fibromyalgia treatment plan..

.Although there are links between certain genes and fibromyalgia, a specific gene has not been identified. In other words, it’s still too soon to for genetic testing or screening to be of any use.”
I’m hopeful in the future that there will genetic testing available for FMS. I believe they are close to developing a blood test that can confirm a positive diagnosis.

Although there is an increased risk of our children getting fibromyalgia, it is not a by any means a forgone conclusion.

Please Don’t Stop Asking Me

Please Don’t Stop Asking Me

It’s so hard for people to understand how you can seemingly overnight, go from being active and busy, to being “anti-social.” Believe me when I say that it’s a very gradual and painful transition, fraught with many difficult adjustments.

It’s a shame that people stop asking us to do things because we’ve had to say no on occasion. We truly would rather say YES to spending time with others, doing things we mutually enjoy. We may have to cancel at the last minute due to a flare-up, increased fatigue or pain, little or no sleep, or brain-fog that keeps us drowning in the inability to focus. We truly do want to spend time with you.

Social isolation can be both lonely and depressing. It’s difficult to watch your family and friends carry on without you. It’s really difficult to have to say no when we want to say yes. So even if  we say no nine times in a row, please ask the tenth time. We may not be able to stay as long as we’d like or participate in the same way, but we still would love to be asked.

Some things I really enjoy when I’m able: playing miniature golf, going to a good movie, taking a walk along the beach, eating at a great seafood or Indian restaurant, going grocery shopping with my husband, playing a board game. What kinds of things do you like to do when you have the energy?

Last year I went with my husband to choose a Christmas tree at a local farm. The first real tree we’d had in years. We sat near an amazing fire pit while the gentleman wrapped our tree. It may seem like a simple thing, but it was a precious memory for me. I get very few of those, so I enjoy the moment and just breathe in the wonder, simplicity, and normalcy.

I also enjoy being asked to for an ice cream. My husband and I used to go get some great BBQ and sit in the car by the lake as we ate, I enjoyed those times. I enjoy sharing a good cup of coffee or tea with a friend. I enjoy a good phone conversation as long as it doesn’t last more than an hour or so.

I say all of that so that you will reach out to those who are chronically ill and offer them the simple, but priceless opportunity to do something special with them. Don’t give up on us.

Please don’t stop asking me.

 

Originally published on:

http://fibromyalgianewstoday.com/blog/2016/08/22/please-dont-stop-asking-me/

Painsomnia in Fibromyalgia 

Painsomnia in Fibromyalgia 

Painsomnia is when you are unable to sleep due to pain. Try to imagine if you have a really bad toothache that prevents you from sleeping, because no matter what you take for the pain, it’s just not touching it. Chronic pain can be like that, especially if you are in a flare. It’s no fun trying to distract yourself from the pain, knowing you have obligations the next day, but sleep is a distant memory.

Sleep deprivation wreaks havoc on your schedule, your plans, and becomes a vicious cycle. Pain causes you lack of sleep and lack of sleep increases your pain. If you have children who need you, you force yourself to push through, but inevitably pay a price for it. I am in awe of and deeply respect men and women who are parents and suffer with Painsomnia. My heart goes out to you.

My children are grown now, so I don’t worry about having to get up and fix breakfast, get them ready, and drive them to school and extra curricular activities. Being older and experiencing Painsomnia has its own challenges. I’ve never done well on less than 8 hours of sleep, so only getting 4 or less at a time, well let’s just say it ain’t pretty.

Have grace for yourself and trust what your body is telling you. It may be to slow down, it may be to drink a warm cup of chamomile tea, it may be to take a long bath with Epsom salts and lavender essential oil. No one understands your pain and inability to get good sleep like you do. Don’t be hard on yourself and don’t let others be hard on you.

Some things you can do to distract yourself on those incredibly hard nights: pray, read a good book, watch a funny movie, do some gentle yoga, chat with a fellow spoonie on social media who is also awake. I personally play games on my tablet or phone. Sometimes I find that a glass of wine helps. Find out what works for you on any given night, and do that.

Here’s to a pain-free good nights sleep!

But You Don’t Look Sick

But You Don’t Look Sick

Boy, if we had a nickel for every time we heard this, we would be wealthy! This is why they call fibromyalgia an invisible illness, because looking from the outside only, you can’t always tell. Our smile hides our pain so often.

What DOES sick look like? Well, we are used to sick people LOOKING sick…pale, thin, lethargic. We look like that a lot of time too, but you’ll probably never see it. A little makeup, a lot of grit and determination, and we look pretty good on the outside. We tend to push ourselves and most of the time people only see us when we’re feeling pretty good, otherwise we are hiding at home.

It’s like a woman who is pregnant. She may not look pregnant, but there are changes going on in her body and she senses them and finds them hard to describe at times. She is frequently tired and nauseas, smells really bother her and her moods can be all over the place. Most of our symptoms are also hidden and not apparent to the people around us. We experience varying degrees of pain, mood shifts, indescribable fatigue, and unrefreshed sleep, just to mention a few.

I have to psych myself up when I go out. I put on some makeup, fix my hair, and basically just suck it up. Most of the time unless you really knew me, you might think I was tired, but I would not look sick to you. That’s the magic of our public persona. We put a lot of effort to appear “normal” when we are out and about or on the job.

Because we didn’t understand that struggle ourselves until our own illnesses hit, we know that unless others are touched by a chronic illness, they can’t fully understand that while we look fine on the outside, on the inside we are falling apart at the seams, and it really makes us feel isolated.

Fibromyalgia is known as an “invisible disease.” You can’t see brain fog, digestive issues, muscle weakness, sensitivity to light, noise, and odors. But they are part of our new normal and while we may not look sick, we absolutely know that we are.

It’s time to redefine what sick looks like.