Cannabis for Fibromyalgia and Invisible Illness (And Ways To Use It)

There has been much talk about the use of Cannabis for treating Fibromyalgia and other Invisible Illnesses. I recently featured John Martinez from Axon who wrote about using CBD Oil for treating migraine headaches. Today I want to share various ways you can use CBD Oils to obtain optimum health. 

While there are many cannabinoids in the plant, THC and CBD are the ones “in charge” for fighting pain and inflammation. What about Hemp? Hemp has some very mild “anti-pain” properties, its use is best suited in other applications. This article by Cannadish gives an excellent breakdown of all three components. 

So how do you use Cannabis to help with a medical condition like Fibromyalgia or MS or arthritis? 

As an example, a Cannabis-infused Topical lotion can be applied to the skin on the areas affected by your health condition, but having a bath is a great solution to have your whole body relax with cannabis oil. It’s especially great before going to bed. One easy way to do this is by making cannabis-infused bath bombs.

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The Process

 

INGREDIENTS

100mg CBD from the dealer of your choice*

1 tablespoon olive oil or coconut oil.

1 cup baking soda

1/2 cup Citric Acid (can be purchased at any soap making store)

1/2 cup Epsom Salt

1/2 cup corn starch

1 teaspoon water Food colouring of your choice

Your choice of essentials oils 30-40 drops

INSTRUCTIONS

  1. Place the dry ingredients in a large bowl and mix together with a whisk.
  2. In a small bowl, mix the liquid ingredients together, including the CBD oil until well blended.
  3. In the large bowl, very slowly add the liquid mixture to the dry ingredients a little bit at a time. The mixture should hold together when squeezed without crumbling.
  4. When well mixed, pack the mixture into your bath bomb mould and pack tightly, then let it dry. Make sure you work quickly so the mixture doesn’t dry out in the process.
  5. Bath Bombs need a full day to fully harden. If they’re not quite hardened enough, they may crumble when you handle them, so check to make sure before taking them completely out of the mould
  6. Makes one good size bath bomb, or several smaller if you are using smaller moulds

*Note: Depending on the strength of the CBD oil you have, the volume (drops or ml) of oil needed for this recipe will vary. For instance, an oil containing 1mg CBD per drop will require 100 drops. Having trouble calculating? Try this CBD oil calculator

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To use your new bath bomb, simply add to a tub of warm, almost hot water and relax for 20 minutes (min). 

Other Forms Of Use

The Patch

Cannabis can be used in other forms as well. Some companies have been selling a Patch. Like the patch used for the diabetic nerve pain treatment, it provides the patient with a controlled release of the medication:

  • Through a porous membrane covering a reservoir of medication.
  • Body heat melting thin layers of medication embedded in the adhesive which will contain high potency cannabinoid (CBD) extract. This extract slowly enters the bloodstream and then penetrates the central nervous system of the patient thus delivering the pain relief sought.

Edibles

This excellent article talks about Cannabis Edibles and the many ways you can enjoy the benefits of this particular form of consumption.  Instructions are given as to dosage, benefits, side effects and more, and it also contains a bit of history as to how edibles came to be so popular. 

The author and I share very similar views that all these forms of ingesting Cannabis are beneficial to those who suffer from Fibromyalgia, MS, Lupus, Arthritis, and more. 

I recommend finding a store near you where you can begin a relationship with the staff to get all your questions answered. Many US States are now allowed to sell legally and Cannabis is legal in Canada as well. 

Get to know the staff, let them show you their favourite products and ways to use Cannabis, and before you know it, you’ll hopefully be finding the relief you’ve been seeking. No, Cannabis doesn’t work for everyone (in fact, I’ve tried it myself and am one of the people that it does nothing for!). Don’t get discouraged right away…try other forms such as the bath bomb if an edible didn’t work for you, or vice versa. 

Cannabis is NOT a miracle cure, but when it works, it can really bring relief to an overwhelmed body. I hope you find this to be true in your case. Remember…

There is always hope

Using CBD Oil In The Bath

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Chronic Pain Is A Thief (And How You Can Stop It)

If you live with Chronic Pain, or know someone who does, you probably know that there’s a lot that is missing from life. Chronic Pain is a thief – it takes from so many areas of your existance, but rarely gives back. I want to talk about this in more detail, so we can hopefully find ways of fighting back.

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Image by mohamed Hassan from Pixabay

Chronic Pain Robs You Of Your Daily Life

Chronic Pain affects every aspect of your health, from the conditions that cause the pain to your everyday normal functions. Moving, exercising, taking care of the house or children…all of these are extremely difficult with Chronic Pain and often something has to suffer in order to get through each day. Perhaps you use more processed foods in your cooking instead of “from scratch” meals. Maybe the laundry goes unwashed for another day so you can spend time with your kids. Whatever the situation for you, you still have to deal with the fact that Chronic Pain has changed your daily life.

Chronic Pain Robs You Of Your Sleep

Painsomnia is the term used for Insomnia that is caused by pain. When you can’t sleep, you effectively lose your ability to function well the next day. Pain at night keeps you from getting the refreshing REM sleep that is so necessary to repairing the body.

There are medications that you can take to enhance your sleep, but they often don’t work and even when they do, you can end up groggy in the morning and feeling “hungover”. That feeling, combined with pain, makes for a difficult day indeed.

Chronic Pain Robs You Of Contributing To Society

If you live with Chronic Pain you may find that you have to give up your job or hobbies in order to function. It can be very demoralizing to leave a career you love or a job that you’ve worked at for an extended period of time. I went on disability in 2009 because pain and brain fog robbed me of the essential skills I needed to do my job well. I was at the top of my career as an Administrative Specialist and Event Planner, and was working at a great company with lots of potential for my future.

After too much time taken off because of health issues, I realized I wasn’t doing anyone any favours by staying at work, so went on short term disability that ultimately ended up becoming long term disability. I was devastated to leave work, but my HR team was helpful and encouraging and made the process easy for me. It took me awhile to realize I was never going to be able to go back to work, but oh, how I cried when it finally hit me.

If you are a volunteer or have special hobbies, you may find you’ve had to give them up as well. It’s hard to watch the world go on while you’re stuck in limbo. Even when you push yourself to maintain a working life or hobbies, you still have to deal with the reality of pain on a daily basis and that makes everything more difficult to manage.

Chronic Pain Robs You Of A Social Life

Living with Chronic Pain makes it hard to socialize with others. When you’re no longer involved in your regular activities such as work or hobbies, you tend to not be invited out to social gatherings with the gang. Even when you are invited, you may struggle to attend functions, or if you do attend, you pay the price for days (or weeks) afterwards.

Sometimes it’s easier to say no to something, knowing how you will end up feeling, but doing so puts you at risk of not being invited to events in the future. It’s a Catch-22 and there is no right answer for how to manage.

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Image by Michal Jarmoluk from Pixabay

Chronic Pain Robs You Of Companionship

If you are in a relationship, Chronic Pain can rob you of the companionship you used to enjoy with your partner. You may have given up work or hobbies, so you have less to talk about, and it’s hard to hear how well someone else is doing when you’re suffering on your own. Sex can become painful and thereby less frequent and intimacy starts to dwindle – even just cuddling can cause discomfort.

You may find your list of friends depleted because no one has time for you anymore. You’re not the same funny outgoing person you were and other people get tired of hearing about your struggles. When you have nothing new to add to the relationship, it slowly begins to die off and the effort of maintaining friendships becomes too much. Especially if you’re not able to go out and socialize like you did in the past.

So how do you manage life with Chronic Pain? How do you navigate this new world that you live in?

Some people find that Chronic Pain strengthens their faith and seek solace with the religion they practice. I personally find that prayer really helps me when I’m struggling – I remember all that Jesus went through in His life and it puts things in perspective for me.

You may find that while you’re no longer able to work, you can manage some volunteer activity based on what it is, and what is being asked of you. I belong to 4 different committees that all have a health focus, but the time requirement for each is minimal. I’m able to attend meetings online when they happen and while I do travel to a different city for one of the meetings, getting out for the day/overnight can be refreshing for the time, even though I know I’ll pay for it later. Just being with grownups discussing how to solve problems helps me realize my brain isn’t dead and I still have a lot to contribute.

If you are no longer working, you may find yourself in a position where you can start a activity for the first time, or devote more time to a long-standing hobby. Even if you’re only able to start reading more or colouring or knitting, it’s something you weren’t able to manage before and that can be empowering. Learning a new hobby doesn’t have to be expensive or difficult, it just needs to be something that brings you joy.

When it comes to socializing, you may be happy to give up a whirlwind of activity and discover that you’re a homebody after all. Perhaps you invite people over to your place more often, instead of going out. You’re able to set the pace which helps you manage your Chronic Pain in a better way.

Chronic Pain is a thief, there’s no doubt about that, but with careful planning, you may be able to trap that thief and get back what’s been taken from you. A cheerful and positive spirit can go along way in helping with that. There’s simply no point in wallowing about the negatives in life as it serves no purpose and only makes you more miserable. Don’t let Chronic Pain rob you of your essential being. Fight back and try to find ways to incorporate joy into your life again. It’s the simple pleasures that give the most reward.

There Is Always Hope

 

It’s Okay To Be Angry About Chronic Illness (I Am!)

Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.

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Image by Free-Photos from Pixabay

The Beginning

I want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now. 

When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis. 

After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro  – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained. 

Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through. 

As Things Changed

Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from. 

It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger. 

Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.

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Image by Sarah Lötscher from Pixabay 

It’s Not Your Fault

I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her. 

Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again. 

Making Changes

I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such as meditation, music therapy, gentle exercise, stretching, beginners yoga and balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there. 

I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster. 

I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences. I continue to seek out new opportunities to volunteer and was recently nominated for two WEGO Health Awards – one for Best in Show: Blog and one for Best Kept Secret (regarding my blog). You can click here for more information about my nominations. 

To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan. 

We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…

There Is Always Hope

 

 

Chronic Pain And How To Manage It (With Real Solutions)

Note: This post contains Affiliate Links which provides an income to me at no cost to you.

In 2016, an estimated 20.4% of U.S. adults had Chronic Pain and in Canada, the numbers say approximately 1 in every 4 people lives with Persistant Pain. Chronic/Persistant Pain is described as pain that extends beyond 3 months of the estimated recovery time of an injury.

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The author dealing with an Atypical Trigeminal Neuralgia flare up

Causes

Chronic Pain can be caused by the following:

  • Past injuries or surgeries
  • Back problems
  • Migraines and other headaches
  • Arthritis
  • Nerve damage
  • Infections
  • Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
  • Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.

Symptoms

Chronic pain can range from mild to severe. It can continue day after day or come and go. The pain can feel like:

  • A dull ache
  • Throbbing
  • Burning
  • Shooting
  • Squeezing
  • Stinging
  • Soreness
  • Stiffness

Sometimes pain is just one of many symptoms, which can also include:

  • Feeling exhausted despite rest
  • Loss of appetite
  • Sleep disturbances (I’m writing this at 2:30am)
  • Mood changes
  • Physical Weakness
  • Depletion of energy

Chronic Pain and Your Mental Health

Chronic pain can interfere with your daily life, keeping you from doing things you want and need to do. It can wear on your self-esteem and make you feel angry, depressed, anxious, and frustrated. A persistant feeling of sadness may accompany Chronic Pain. Often, people with Chronic Pain have to give up work, hobbies and activities they enjoy, which leads to further depression, etc.

Fighting Back

With such a high prevalence of Chronic Pain in North America, how does one fight back? How do you manage living with Chronic Pain and still maintain quality of life? There are a number of ways to manage, such as:

Pain Management Courses

These courses can be a combination of Cognitive Behaviour Theraphy, Meditation and Mindfulness, Injections to help with certain types of pain, and group talk where you have the support of others in a healthy moderated environment. There are also online pain management courses for those unable to get to programs in other locations. These include:

Pain Foundations BC

Online Therapy Pain Course

Pathway Through Pain

Mind Body Pain Clinics

On Amazon.com, you can also purchase the following – click each title to link directly to Amazon:

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Pain Management Tools

There are a number of tools available that may help you with your Chronic Pain, and are worth trying.

TENs Unit

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Mindfulness For Pain

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Mindfulness Solution

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Infrared Solutions

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Hypnotic Techniques for Pain Management

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Cognitive Behaviour Therapy Workbook

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It is my sincere hope that some of these suggestions may be just what you need to help you manage your Chronic Pain. Don’t forget to check for Pain Management Services at your local hospital as well. They often run classes of 4-8 weeks that can help you learn how to support yourself.

Medication And More

Medications play a huge role in managing your Chronic Pain. Opioids are in the news now as doctors across North America are being forced to scale back the number of prescriptions they write, but there is still a useful place for them and it’s worth discussing with your doctor to see if you can benefit.

Other medications that help include drugs like Cymbalta, Lyrica and Savella for Fibromyalgia pain, Gabapentin for nerve pain, Amitriptyline for anxiety and pain, and supplements like B12, Glucosimine, Magnesium, SAMe and Vitamin D

This article from Medical News today lists a number of essential oils that can help with pain, and discusses other complementary tools such as acupuncture and yoga.

Yoga For Pain Relief

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Yoga Essentials

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Essential Oils

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I hope that some of these suggestions will help you manage your Chronic Pain and give you some relief. If you have any suggestions for products that work well for you that I should consider in a future post, please feel free to leave a comment using this form

Remember…

There Is Always Hope

 

 

10 Things I’ve Learned About Chronic Pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

Interview April – Jill Goodpasture

It’s time for our next guest, the delightful Jill Goodpasture!

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Introduce yourself and tell us a bit about you…

My name is Jill Goodpasture aka Fibroscoop. I have been writing my blog The Scoop on Fibromyalgia and Chronic Illnesses for a year now. I am a divorced mom of 2 teenage boys, 15 and 19. My oldest just left home so things have just changed around the house recently. I also have 3 furbabies and Sophie my support dog is frequently featured on the blog. She is just too stinking cute not to get on there occasionally.

Chronic illness(es)/disabilities I have…

I have Fibromyalgia, Early Degenerative Arthritis in my lower back and hips, Plantar Fasciitis, Narcolepsy, Sleep Apnea, Depression, and Anxiety.

My symptoms/condition began/My diagnosis process was…

In the spring of 2016, I started to have trouble with plantar fasciitis for a second time. I went back to the podiatrist who treated it the first time with cortisone shots. This time the shots didn’t work though. In fact, I had a inflammatory reaction to the shots and can no longer take steroids. I started seeing an Orthopedic Foot Doctor who put me in a boot for 6 months. During that time my back and hip started hurting. When the boot went away, the pain in my back and hip just got worse. When it persisted. I went to the orthopedic for my back and they said I had arthritis in my back and hips.  This was Oct 2016. In about August of that fall I had begun having body aches and nerve pain in my legs. This progressed to numbness and weakness.

The Doctors did nerve tests and MRI’s and finally said there was nothing wrong and sent me to PT. Well it so happens that I had the best PT in the world. She told me that it really sounded like I had something Autoimmune going on with my body. She knew my GP and told me to go talk to him. I did and he said he thought I had Fibromyalgia and maybe MS or RA. He did a thousand blood tests and when everything came back negative he sent me to a Rheumatologist and recommended that my Neurologist do a brain MRI. The Rheumatologist diagnosed early degenerative arthritis in my lower back and hips and fibromyalgia. She ran a bunch of tests that were negative and said we would keep our eyes on and keep checking for muscle conditions based on symptoms. My Neurologist did a brain MRI and there was no sign of MS but we recheck every 6 months.

I have struggled with depression and anxiety since middle school. I have seen a therapist and been on medication for about 20 years now. I like to think I have it pretty much “under control” but anyone with depression knows that is a myth. My therapist and I have a close working relationship and do phone visits weekly, and anytime I feel overwhelmed or that the pain is too much to handle I text her and we schedule extra visits as needed.

The hardest part of living with my illness/disabilities is…

This is a tough one. I would have to say it is a toss up between seeing how it has affected my kids to the loss of the future I had all planned dreamed of for so long.

A typical day for me involves…

I generally wake up early, between 5 and 7. My son gets himself up for school so on the off chance I am able to sleep in, I can do so. When I first wake I lay in the bed and do a few stretches so that when I move to get up it won’t hurt so bad. Then I take my cpap off and put the hoses in the drawer and get up. I stand there and do a few more stretches. I make my bed up and set up a bunch of pillows to recline against and turn on my heating pads to warm up. I let the dogs out. Then I use the restroom and put my medicine bin on the bed so I won’t forget it. I make breakfast, coffee, and a big cup of Diet Dr. Pepper (my lifeblood). When everything is ready I go back to the bedroom and let the dogs in. I filled their bowls while I was in the kitchen.

I make myself comfy on the bed, turn on the morning show and eat my breakfast. Then I take my meds and supplements and do my journaling for the day. I might spend a few hours journaling if I don’t have anywhere to go. If I am going somewhere then as soon as the stiffness leaves my body I will get in the shower so I can sit on the bed for a while after to recover before the appointment. I always schedule appointments with this in mind. After the appointment or a few hours of journaling, around noon or one I will eat lunch if hungry and take a nap. This could be anywhere from one to four hours. When the kiddo gets home from soccer, thankfully transported by friends, we reheat leftovers, eat frozen dinners or he cooks usually. Then he usually does homework and talks to friends and showers til bed. I text with friends and sometimes journal or watch tv or something.

The one thing I cannot live without is…

My phone, it is my connection to the world outside my bedroom. My heating pads for pain control. I can’t decide between them.

Being ill/disabled has taught me…

Well, I think that my illness is trying to teach me patience and the ability to sit and relax, but I have not quite learned the lessons yet. I hate being in the bed all day doing nothing. I get impatient in SO many ways. I am a work in progress.

What advice would I give someone recently diagnosed…

RESEARCH and FIGHT. Research your disease and not just in the medical journals. Go to the blogs and the internet and read what people who have your condition have. Talk to people. You would be shocked once you start telling people how many people you know will have the same condition. Once you are armed with information then you fight. You fight with the doctors and the insurance companies and make sure you get the diagnoses, treatments, and medicines you need to get better.

My support system is…

My mother, my two kids, my friend Lori, and my ex-husband all provide supports in different ways. My best friend Traci has been there more times than I can count. My biggest support is my therapist who has went above and beyond making herself available by phone 24/7 to help when I am in pain or depressed or having major anxiety or whatever I need.

If I had one day symptom/disability-free I would…

Be on the go from sun up to sun down. I would do something fun with my boys. I would go kayaking with my best friend. Go out to eat anywhere I want. Go see a movie. Just go, go, go. Like before I got sick.

One positive of having a chronic illness/disability is…

Hmmm…. This question is a tough one for me. I honestly cannot come up with a positive at this point. Maybe I will one day but right now in this journey I cannot.

My social media links are:

Blog:

https://scooponfibro.wordpress.com/

Facebook:

https://www.facebook.com/fibroscoop1/

Instagram:

https://www.instagram.com/fibroscoop/

Twitter:

https://twitter.com/Fibroscoop

What It Memes To Have Chronic Pain

They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:

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There is always hope

Communication Skills

Ah, communication. What a tricky thing you are.

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When you’re a person living with Chronic Pain (PwCP), you get asked the same question quite frequently.

How are you?

And my standard response has always been, “I’m fine”. But what a lie that is, when clearly, I’m not fine, or I’d be living a different life. If I was fine, I wouldn’t be on disability, using a cane or a walker everywhere I go. If I was fine, I wouldn’t be in constant pain from my Fibromaygia, or my D.I.S.H. or my osteoarthritis in every joint, or experiencing the issues that go along with my Bipolar Disorder or my Diabetes Type 2 or my Trigeminal Neuralgia.

If I was fine, I wouldn’t have insomnia, and be up 22 out of every 24 hours, even after taking valium to help me relax and sleep. If I was fine…I wouldn’t be blogging about being fine.

So why do I respond that way?

People Don’t Want To Hear The Truth

People don’t want to hear the truth. It makes them uncomfortable to know that someone is hurting when there is nothing they can do about it. It makes them feel weird, to hear about someone else’s pain. They get antsy, thinking they’re in for a long diatribe about medical procedures and doctor visits as if they’re at risk for catching something themselves. They get nervous thinking they’ll hear about your emotional state. And to be honest, a lot of the time, people don’t really care how your feeling. They ask you how you because they’re polite. It’s the right thing to do.

So, I’ve decided to stop telling people that I’m fine. I’ve decided to come up with a new response, and that new response is:

“Part of me is great, and part of me is not so great.”

I’ve decided this gives people an out. If they don’t want to know more, they can simply reply “well, I’m glad part of you is great” and carry on with their own lives. If they genuinely want to know more, they can ask about the parts that aren’t doing well. That way, I know that they’re sincere about how I truly am instead of just making polite conversation.

I hope this doesn’t sound like I’m being sarcastic, because I’m not. I’m genuinely trying to help people be more comfortable around People with Chronic Pain and to find a way to make it easier to ask and answer that question of “how are you”. It’s a tough one because there is no one good answer. The PwCP doesn’t know if you’re sincere and we don’t know how much information you truly want. The last thing we want to do is bore you with the latest in our medical news, and trust me…it’s truly devasting for us when we think you’re interested and then we find out you’re not.

Showing Real Interest

I doubt seriously there’s any malicious intent in your question either, but again, it comes down to being polite and being interested. I would rather give you a polite answer and have you ask for more information if you really want it, but that comes with its own complexities as well. Suppose I say “I’m fine” and you hear “oh, she’s fine, I guess everything must be okay” when what I really mean is “I’m fine, but not really and I wish you would ask me more about my day and how I’m feeling”.  It’s a communication breakdown because I don’t feel I can ask for what I want in case you’re not really interested, and you don’t feel like there’s necessarily anything else worth asking about.

If you ask me if I’m fine though and I tell you “actually, I’m not doing so great”, how would you respond? If you’re simply being polite, now you’re stuck. You either have to listen to what’s wrong or say something trite like “oh, I’m so sorry to hear that” and change the subject. Neither of us leaves the conversation satisfied, so my response, even if it’s the truth, isn’t the best one either.

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Two small words with so much meaning behind them.  That’s why you’ll be hearing a different response from me going forward. I’m going to try my best to stay away from those two words to make it easier on all of us and start answering with my new response:

“I’m doing as well as expected given the number of health issues I’m living with.” That leaves it open to the person to expand on the subject if they wish or to simply say “oh, that’s good” and move on.

I appreciate your thoughts and comments about this subject. And for those of you without chronic pain, I hope you’re doing fine – really!

There is always hope.

Invisible Illness – But You Look Fine!

One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?Screen Shot 2018-12-10 at 10.56.48 AM

For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.

Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.

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So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.

Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:

FibroSymptoms2

And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.

Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.

Remember…you are perfect just the way you are…everything else you do is a bonus.

Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.

There is always hope.

 

Refresher Course

I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Hypothyroidism

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.

Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.

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I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.

My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

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Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die to having to feel better in order to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.

The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

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Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.

One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.

I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.

Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.

So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…

There is always hope