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

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Gastroparesis Is A Slow Go

One of the many conditions I live with is called Gastroparesis. Gastroparesis means paralysis of the muscles of the stomach. Gastroparesis results in delayed emptying of food from the stomach into the small intestine. It can be minor or quite severe; in my case, I have a moderate degree of paralysis, and the food sits for 2-3 days before being processed further in the digestive system.

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I wasn’t aware there was a problem at first as the usual signs of Gastroparesis are nausea and vomiting. I didn’t suffer from either of those, but I did experience a lot of bloating. It felt like whatever I ate just sat there in my belly forever.

Some of the causes for Gastroparesis include:

There are many symptoms of gastroparesis, including:

  • Heartburn or GERD
  • Nausea
  • Vomiting undigested food
  • Feeling full quickly when eating
  • Abdominal bloating
  • Poor appetite and weight loss
  • Poor blood sugar control

Some of the complications of gastroparesis include:

  • Food that stays in the stomach too long can ferment, which can lead to the growth of bacteria.
  • Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine.
  • People who have both diabetes and gastroparesis may have more difficulty because blood sugar levels rise when the food finally leaves the stomach and enters the small intestine, making blood sugar control more of a challenge.

HOW DO THEY TEST FOR GASTROPARESIS

To diagnose gastroparesis, your doctor will review your symptoms and medical history. He or she will also give you a physical exam and may order certain blood tests, including blood sugar levels. Other tests used to diagnose and evaluate gastroparesis may include:

  • Barium X-ray: You drink a liquid (barium), which coats the esophagus, stomach, and small intestine and shows up on X-ray. This test is also known as an upper GI (gastrointestinal) series or a barium swallow.
  • Radioisotope gastric-emptying scan (gastric scintigraphy): You eat food that contains a very small amount of radioisotope (a radioactive substance), then lie under a scanning machine; if the scan shows that more than 10% of food is still in your stomach 4 hours after eating, you are diagnosed with gastroparesis.
  • Gastric manometry: A thin tube that is passed through your mouth and into the stomach measures the stomach’s electrical and muscular activity to determine the rate of digestion.
  • Electrogastrography: This test measures electrical activity in the stomach using electrodes placed on the skin.
  • The smart pill: This is a small electronic device that is swallowed. It sends back information about how fast it is travelling as it moves through the digestive system.
  • Ultrasound: This is an imaging test that uses sound waves to create pictures of body organs. Your doctor may use ultrasound to eliminate other diseases.
  • Upper endoscopy: This procedure involves passing a thin tube (endoscope) down the esophagus to examine the lining of the stomach.

I underwent the Radioisotope gastric-emptying scan. 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.

DAY OF TEST

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 the sandwich, 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.

If you’re experiencing symptoms of Gastroparesis, please make an appointment to see your family doctor as soon as possible. There are treatments available and you won’t have to put up with the suffering. Thanks for reading and remember…

There Is Always Hope

What Does Science Say About CBD Oil For Migraines

Let’s welcome back John Martinez as my Guest Blogger today. John brought us information about using eyewear to help with migraines, and today, he’s talking about CBD Oil to help ease Migraine pain. Please note that all opinions expressed are those of the author but I do endorse them as well.

CBD Oil for Migraines – Effective, or Merely Hype?

migraine-headache-symptoms

CBD oil has been gaining some steam in the media ever since its recent December 2018 legalization in the US.

Additionally, in the migraine community, there are loads of anecdotal evidence expressing the effectiveness of CBD and treating migraines. Is it all hype, or are these claims backed by scientific literature?

This article will get into the specifics of what CBD oil is, and whether it’s something migraineurs should investigate as something that could benefit them.

What Is CBD Oil?

CBD (also known as cannabidiol) oil is a naturally derived product from the plant Cannabis Sativa. Cannabis Sativa is categorized as a family of plants that contains two primary species: hemp and marijuana. The Cannabis Sativa plant also contains 120 other substances aside from cannabidiol. Most CBD oil is extracted from the hemp plant and contains no THC, which is the psychoactive chemical in marijuana. THC is the chemical that causes the feeling of being high. CBD oil is an isolated extract from the hemp side of Cannabis Sativa, not the marijuana side of the plant that contains THC.

Simply put, CBD is not marijuana and will not make you high.

Although CBD is derived from the same plant that has the ability to produce marijuana, CBD is non-addictive. A study that was conducted by the World Health Organization has proven, through a double-blind and randomized study that, on the scales of the Addiction Research Centre Inventory, there was no difference in addiction risk between CBD oil and the administered placebo.

Could CBD Oil Help Me with Migraines?

The efficacy of CBD oil to treat migraines varies from person to person. In a 2012 study, CBD was found to reduce inflammation and assist with chronic pain relief. CBD oil has minimal side effects compared to typical over the counter drugs and prescribed medications. Some side effects of CBD include appetite changes, fatigue, and diarrhea, which most of us would categorize as minor. One of the most appealing aspects of CBD oil is that it is not a pharmaceutically-engineered drug, but rather a natural avenue towards pain relief.

Unfortunately, there hasn’t been any studies specifically demonstrating the effects CBD has on people with migraines. There have been quite a few studies on marijuana as a whole and migraines, but not isolated CBD.

For example, there was a 2016 survey conducted by Pharmacotherapy which indicated that “medical marijuana” may reduce the frequency of migraine headaches – from 10.4 down to 4.6 per month. Even though marijuana contains CBD, we can’t attribute the results to CBD.

Overview of CBD Oil and Migraine Pain Relief

While it’s too soon to definitively say that CBD oil might be an effective treatment for people suffering with migraines, progress is being made.

All we know for sure is that there are some properties in CBD that help with inflammation and chronic pain management. And we also know that in medical literature, marijuana (which contains CBD) seems to be giving some people migraine relief.

Since it’s now legal on a federal level (in the US), and it’s a naturally occurring compound, it may be worth a try.

If you want to learn more about CBD, check out this article, CBD Oil for Migraines (2019) – Everything You Need to Know.

Remember, there is always hope

Managing My Mental Illness

I have Bipolar Disorder and have talked about it before on my blog. It’s not something I hide but I don’t really discuss it much either so I thought I’d share a bit more about what it looks like for me.

Although currently stable on medication, when I was unmedicated and undiagnosed, I would have the most incredible highs and lows. My manic highs would see me racing around the house, cleaning whatever I could, and cooking dinners every night and baking and crafting and never, ever sleeping…I would be up for days on end without any sleep at all. At my worst, I was awake for 8 days in a row – and I mean without a drop of sleep. I was unbeatable…I would shop online without realizing what I was doing, and then all of a sudden, these packages would start arriving and I would have no clue what was in them – usually jewellery (cheap stuff) or clothing from Zulily (an online store I love).

woman-shopping-online-sample-sale

On the other hand, when the inevitable crash came, I would crash hard. All I wanted to do was curl in the fetal position in bed and sleep…so that’s all I did. I didn’t bathe, I didn’t eat, chores went by the wayside, forget about cooking and crafting. I did the bare minimum to keep my cat alive and my husband had to fend for himself after a 12 hour day at work when it came to eating, plus do the dishes. I rarely left the bedroom, unless it was to spend mindless hours on the computer doing nothing.

Once we realized how serious the problem was, my husband and I realized it was critical that I needed to be on medication. I saw my doctor and was started on Seroquel. After that drug stopped working, I’ve been taking Abilify, which has been excellent for me in terms of managing my symptoms. Unfortunately, the side effects have been harsh and I’ve been paying the price.  I am not a vain woman, but I’ve put on 20lbs since using the medication (in 6 months) and it’s 20lbs I can’t afford to carry on my 5’2″ frame. I have no ability to exercise and lose the weight, especially now that I’m wearing an Air Cast on my left ankle to try to help reattach a tendon that has torn away from the bone. Plus I take other medications that all have their own side effects…so I have to be careful with those as well.

Screen Shot 2018-10-29 at 6.16.50 PM

I’ve also experienced some other unpleasant side effects including severe brain zaps, and I’ve been seeing shadows on the sides of my vision. These were enough to send me back to my Psychiatrist to discuss making another medication change – the dance that you tango when you have a mental illness. He’s decided to try me on one of the older drugs that is less likely to cause weight gain like so many of the newer ones do. It’s called Zeldox (my family doctor says it sounds like a cartoon character and I agree!) and the side effects listed are as follows:

  • constipation
  • cough
  • diarrhea
  • dizziness
  • fatigue
  • flu-like symptoms (e.g., fever, sore throat, chills)
  • leakage of fluid or milk from breasts (women)
  • menstrual changes
  • nausea or upset stomach
  • rash
  • restlessness
  • runny nose
  • sexual difficulties
  • vomiting

In general, most of these are mild and go away in the first couple of weeks of taking the medication, so I’m not too concerned. I’m just hoping that the brain zaps disappear as this is one of the most unpleasant of all the side effects that I experience. What is a brain zap you ask?

Brain zap or brain shiver is a term used to describe the sensation of a sudden jolt or buzz in the brain. It is also compared to the electrical shock, has no apparent cause and is brief in duration. In most cases, it’s relatively mild but people have reported the occurrences of very extreme and painful jolts. They are a temporary occurrence. Brain zaps can sometimes be accompanied by dizziness, tinnitus, mild pain and ache and a general sense of discomfort.

I experience mine as a buzz that goes across my head from ear to ear. I can hear the loud buzzing sound as well as feel it, but there isn’t any pain. It’s almost like the hum of an electric razor, but very quick and sudden. Sometimes it’s just one zap, sometimes it’s a series of them. They’re mostly just annoying more than anything but a side effect I can do without due to their frequency.  The shadowing I’ve been getting in my vision is more worrisome as I tend to freak out about anything to do with my eyes. I have no eye problems (other than wearing glasses) and I’d like to keep at least one body part in good shape for as long as possible if you know what I mean!!

I start the new medication on Monday, Dec. 17th but am writing this post to be read in February so I’ll add an update underneath so you know how it’s going.

Bipolar Disorder can be tricky to manage but with the right care, the proper medications and taking them at the right times, it can lead to a normal life. I’ve found the perfect balance between mania and depression. Now I’m able to function most days with the cooking and cleaning when my other health issues allow it and my poor husband can come home to dinner waiting most of the time. I feel more likely to work on a craft than when I was in a depressive crash, and while my sleep still isn’t the greatest, I’m not staying awake for days on end either.

Sometimes called Manic Depression, Bipolar Disorder causes extreme shifts in mood. People who have it may spend weeks feeling like they’re on top of the world before plunging into a deep depression. The length of each high and low varies greatly from person to person. If you are experiencing these symptoms, please see your doctor. There is help available and beyond that…

There is always hope!

Chronic Illness and Anxiety

When you’ve been diagnosed with a chronic illness, you may feel as if you’ve lost control over your future. The stress of learning to deal with doctors and specialists, coping with physical changes, and managing daily life can often lead to excessive worry or stress. Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.* People with ongoing, or chronic pain are three times more likely to develop symptoms of anxiety.**

Woman-in-pain-500x334

The daily demands of living with a chronic illness continues to present challenges and generate anxiety long after the diagnosis has been given. Loss of mobility or other abilities can lead to worry about employment or financial concerns. Depending on others, worrying about becoming a burden or even intimacy with your partner may also be concerns. Some people are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope. Still others may be in limbo, unable to make decisions about their future.

The Most Common Anxiety Disorders are:

1. Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating.
2. Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day.
3. Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening.
4. Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD.
5. Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.

Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety. I personally am terrified of the Dentist, even though they treat me gently and with compassion. I have to take medication to help relax me in order to go for a simple cleaning.

Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture, massage therapy, ). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience signs of anxiety.

Emotional symptoms of anxiety include:

  • Becoming easily agitated, frustrated, and moody
  • Feeling overwhelmed, like you are losing control or need to take control
  • Having difficulty relaxing and quieting your mind
  • Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
  • Avoiding others

Physical symptoms of anxiety include:

  • Low energy
  • Headaches
  • Upset stomach, including diarrhea, constipation, and nausea
  • Aches, pains, and tense muscles
  • Chest pain and rapid heartbeat
  • Insomnia
  • Frequent colds and infections
  • Loss of sexual desire and/or ability
  • Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
  • Dry mouth and difficulty swallowing
  • Clenched jaw and grinding teeth

Cognitive symptoms of stress include:

  • Constant worrying
  • Racing thoughts
  • Forgetfulness and disorganization
  • Inability to focus
  • Poor judgment
  • Being pessimistic or seeing only the negative side

 

What You Can Do

Challenge negative thinking. When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness. One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts. Counselors/therapists can play an important role in teaching you this important coping skill.

Calm your mind. Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body. Taking  time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.

Find a good Doctor. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.

Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges. Support groups, whether online or in person are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness.

Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.

If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable, so remember…

There Is Always Hope

*https://adaa.org/serious-chronic-or-terminal-illnesses
**http://www.health.harvard.edu/mind-and-mood/depression_and_pain

Let’s Find Out If Fibromyalgia Is Real.

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia IS REAL.

Here are just some of the MANY symptoms that people with Fibro have reported experiencing:

Fibromyalgia-Signs-Causes-and-Treatment

Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all
18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.

Research has now shown that Fibromyalgia is NOT an inflammatory condition like so many doctors first thought. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord. This causes widespread pain throughout the body that can be felt in many different ways, and these include the various symptoms shown in the chart above.

Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me.

But, as I always say…

there is always hope!

Turning Shame to Victory

I should on myself today.

Screen Shot 2018-11-11 at 9.43.18 AM

As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.

Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.

And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.

So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.

What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?

In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.

  • What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
  • What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
  • What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
  • What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
  • What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.

Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!

So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.

That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!

Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.

Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.

All That Matters

It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.

There is always hope

 

 

 

* https://fibromyalgia.newlifeoutlook.com/self-esteem-fibromyalgia/

Medication Frustration

It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.

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There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).

Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.

The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.

Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.

Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!

Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.

It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!

there is always hope!

The Opioid Crisis vs. Us

There is an Opioid Crisis in North America and it’s affecting two factions of people – the ones who take and use opioids illegally and the ones who use and take opioids legally as prescribed by their doctors. I want to focus on the second group because we’re not being given our due in the news. First though, let’s look at some numbers.

*Every day, more than 115 people in the United States die after overdosing on opioids.1 The misuse of an addiction to opioids—including prescription pain relieversheroin, and synthetic opioids such as fentanyl—is a serious national crisis that affects public health as well as social and economic welfare. The Centers for Disease Control and Prevention estimates that the total “economic burden” of prescription opioid misuse alone in the United States is $78.5 billion a year, including the costs of healthcare, lost productivity, addiction treatment, and criminal justice involvement.2

**Canada isn’t far behind. “This is a major public health crisis in Canada,” says Dr. Theresa Tam, Canada’s chief public health officer. “Tragically, in 2016, there were more than 2,800 apparent opioid-related deaths in Canada, which is greater than the number of Canadians who died at the height of the HIV epidemic in 1995.”
New data from the Public Health Agency of Canada (PHAC) shows that from January to March 2017, there were at least 602 apparent opioid-related deaths across the country; it is expected that this count will rise as additional data becomes available.

Pressure is being put on physicians in both countries to stop prescribing opioid medications or to cut down on the number of prescriptions they write, and many are complying. So where does that leave us, the People with Chronic Pain (PwCP) who depend on opioid medication to manage their pain in order to have any semblance of quality of life?
BrainOutOfOrderDueToPain

Physicians and Pain Doctors are now more likely to offer Pain Management Programs and techniques in place of opioids. These programs use a combination of non-opioid medications such as over-the-counter or prescription ibuprofen (Motrin), acetaminophen (Tylenol), aspirin (Bayer) and steroids, plus various therapies, including:

  • Physical therapy – A physical therapist or physician who specializes in physical medicine and rehabilitation may be able to create an exercise program that helps you improve your ability to function and decreases your pain. Whirlpools, ultrasound and deep-muscle massages may also help.
  • Acupuncture – You may find relief from acupuncture, in which very thin needles are inserted at different places in your skin to interrupt pain signals.
  • Massage Therapy – can help to relax the muscles that may be causing you pain
  • Injections or nerve blocks – If you are having a muscle spasm or nerve pain, injections with local anaesthetics or other medications can help short-circuit your pain.
  • Biofeedback – where you learn to control involuntary functions such as your heart rate.
  • Surgery – When other treatments aren’t effective, surgery can be performed to correct abnormalities in your body that may be responsible for your pain.
  • Cognitive Behaviour Therapy (CBT) – can change the thoughts, emotions, and behaviours related to pain, improve coping strategies, and put the discomfort in a better context

Are these programs helpful? Do they work? Do they relieve pain?  Well, from my own personal experience, the answer is no, they don’t take your pain away. They do give you the tools to manage your pain more effectively as long as you employ the tools on a daily basis, but when your entire body is wracked with a deep aching, burning sensation that NEVER GOES AWAY, it’s almost impossible to manage that. When my legs feel like bricks and my arms are burning like fire and I can’t move my shoulder to brush my hair and my knee is collapsing when I walk and my spine feels like it’s going to collapse any second from now from the intensity of the stabbing I feel…it’s hard to be motivated that today is going to be a good day.

Now, I have to be honest and admit that I am still taking opioid medication. I have been, for the last 10 years. I have weaned down my dosage, but I still take it. Right now, I take a Slow Release dosage of OxyNeo (Oxycodone) in a dosage of 30mg, 3 times a day. Each dose is to last me 8 hours. Does it work? Somewhat…it keeps my pain at a 4-5 on the pain scale which I can manage with other techniques. If I didn’t have the medication, I would be at a steady 8 on the scale, all the time. Now, what would happen if my Doctor decided to stop my drugs? I would be hard pressed to manage without them, especially after so many years of taking them. Am I an addict? No, I’m not and here’s why. When you have legitimate pain, it’s impossible to become addicted to a pain medication. It’s when you take a medication that you don’t need that you become addicted to it.

I want to share a conversation I had in a chat with a couple of friends who’ve allowed me to share their thoughts and first names. Read what happened to Lindsay and our replies:

What Lindsay said: 
I just had a run in with a pharmacist yesterday. I suffer from interstitial cystitis, endometriosis, chronic ovarian cysts, degenerative disc disease, fibromyalgia and arthritis. Since January I’ve had 9 kidney infections, one or two a month. I have an appointment with an infectious disease specialist at the end of this month, and I have my normal team of Drs and specialists that I already see along with my pain management dr. Well every time I have a kidney infection it causes my IC to flare and my pain because so out of control that I end up in the ER, so my PM gives me extra pain meds to help me get through the infection. Well my normal pharmacy had a pharmacist who’s been snippy with me before and when I handed her the extra script, she blew up on me. She said pain meds don’t help with my kind of pain, it’s only a bandage treatment, I shouldn’t be allowed to take pain meds this long, my regular pain meds should be enough, I’ll OD, my dr is an idiot, I’m not really in that much pain and she wrote a bunch of notes on my account barring me from ever getting extra meds again, including for surgeries etc. I started crying, she used an aggressive tone and lectured me in front of a line of other patients and threatened not to fill my prescription, then did after slamming her hands down and furiously writing on my prescription paper then on my account about how I’m not allowed to do this anymore. I was so so embarrassed and now I’m terrified to have anymore prescriptions or anymore acute pain issues. I hate that this is my life now. I didn’t ask for this!
What I said: 
It’s been said to me by my Doctor that it’s impossible to become an addict to opioids when you actually, truly need them. I don’t get high, and I function completely normally. I could be tested by the police and while the drug would show in my system, I wouldn’t show as impaired. It’s the people who abuse the drug and who take it in a manner it’s not meant to be taken in that ruin it for the rest of us. I would have reported your pharmacist to her association. That was uncalled for and completely unprofessional. She can NOT refuse you unless she refuses to serve you completely. Can you transfer to a different pharmacy for the future? Honestly, if she had done that to me, I would have raked her over the coals….no one, and I mean NO ONE talks to me like that. EVER. I live in Canada and we are facing our own Opioid Crisis here as well. The College of Physicians and Surgeons is cracking down on Doctors who over prescribe or who prescribe too high of a dosage of narcotics to patients. I have been on Oxycodone for almost 10 years now, going from a dose of Slow Release OxyNeo 90mg 3 times a day to 30mgs 3 times a day. plus other meds I take for Fibro, Osteoarthritis, D.I.S.H., Trigeminal Neuralgia, Bipolar Disorder, Diabetes Type 2 and Hypothyroidism, amongst other issues. Three of my drugs clash and shouldn’t be taken together, but I have no choice. I hope you’re able to find a pharmacy that treats you with respect and dignity just like you deserve. Before you give them your business, shop around and ask them what their policy is for opioid customers. Tell them of the experience you had and ask them how they treat that type of situation. Good luck to you and I wish you better, pain-free days ahead. oxoxo
what Angela said: 
I fight this as well and also have issues with my body metabolizing my meds too quickly. The dosages i am on would probably put someone into an overdose but unless you know what i am on, you’d never know i was on anything. Trying to advocate for myself constantly is a huge struggle and mentally draining. The thing is, i am also a nurse and still trying to remain independent through the 9 surgeries ive had in the last 5 years alone. Not only is it a struggle to advocate for myself but i also advocate for my patients the best i can as well. I am constantly fearful that i am going to be cut off from my meds and end up in a pain crisis, in massive withdrawal and become completely unable to support myself. I am also a single mom, so losing my income is a big deal. I am so sick of taking heat because of people who abuse the system. Of every person i know who has chronic pain and take medication, none take them incorrectly, nor do they get high from them. Even if i do take more than usual, i just get sick so if my pain is out of control, i really have to weigh that consequence. I am now in dread because i have to see a new pain management PA next month and my surgeon is moving. Just this thought is really stressing me out.
These are the things we have to deal with as PwCP. It’s not just the doctors we fight with about our medications – it’s the pharmacists as well.
Yes, my friends, there IS a crisis regarding opioid medication and it’s affecting the people who need the drugs the most. The patients. The people with chronic pain. Us.
Me.
Thanks for reading.
There is always hope.
* https://www.drugabuse.gov/drugs-abuse/opioids/opioid-overdose-crisis
**https://www.cihi.ca/en/opioid-crisis-having-significant-impact-on-canadas-health-care-system

Let's Make One Thing Clear…

Welcome!

FIBROMYALGIA IS REAL BUT YOU WILL ALWAYS FIND DOCTORS WHO DISAGREE

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia DOES exist.
fibro-symptoms-chart
Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all 18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.
Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me. But, as I always say…
there is always hope!