Sleepless In (Enter City Here)

I’m awake. Again.

I went to bed around 9:50pm feeling pleasantly tired. I was yawning after a long day and having been up since 4:30 am. I followed my nightly routine, got into bed, got comfy and drifted off to sleep.

When I woke up to pee, it was no big deal…I’m not a great sleeper and I figured this was my usual “90 minutes later” wake up call.

I’d slept for 72 minutes. I think that’s a record for shortest time at night. And the worst part was I was wide awake. Like…wide awake. There was no chance I was going back to sleep.

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I hate having insomnia. I don’t know if it’s Fibromyalgia induced, or if it’s because of my sleep apnea or if it’s because of the medications I take, but I haven’t slept for more than 2-3 hours a night in over 5 years now. And once I wake up at 4am-ish, that’s it, I’m up for the day. I get the house ready for the day before my hubby gets up for work – the blinds open, the kettle ready, last nights dishes put away, the cat fed…those sorts of things. I make a coffee, come sit in my recliner and then hubby is up and I’m out of his way while he starts his morning routine. It works for us, and nobody gets hurt! Once he leaves for work, I have my breakfast and then I look at the long day ahead of me and figure out what I’m going to do to fill it.

Do I go back to bed after that? No, because as tired as I am, the best I’ll do is sleep for an hour and what’s the point? If I’m going to nap, I’d rather try to save it for later in the day, when there’s a chance I might sleep longer. That’s my hope anyways, Besides, if I sleep in the morning, I might miss the hummingbirds who come to the feeder on my back deck

PatioFence

Sleep, or the lack of it, is a major side effect of having Fibromyalgia. Statistics show that people who have Fibro never make it into the deep REM sleep the way they need to so they miss the restorative sleep phase so necessary to feel rested:

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It’s no wonder I can never feel rested! I never get to the restorative stage! I also know I have sleep apnea. I have a CPAP machine and I have tried so many times to use it but I just can’t get used to the mask. I’ve tried a few different ones too, including over the face, and the current choice of the nasal style, but the longest I’ve lasted with wearing them is 4 hours before I wake up ripping them off of me. The worst part is that I am a side sleeper and trying to keep the damn things in place while on your side is next to impossible. Okay, maybe I’m just complaining because I don’t want to use the machine…how incredibly unsexy is that thing! but Hubby should be using one too and he refuses so part of the problem is also resentment.

So, after waking up after my glorious 72 minutes of sleep, and in the interest of good sleep habits I got up. At least I know better than to lay in bed, just hoping I’ll fall back asleep again. Here are some of those good sleep habits I’ve learned about over time:

  • Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations (hello 4am!)
  • Set a bedtime that is early enough for you to get at least 7 hours of sleep (does 5pm count?).
  • Don’t go to bed unless you are sleepy (I could be there 24 hours a day)
  • If you don’t fall asleep after 20 minutes, get out of bed (but I’m sleeping!)
  • Establish a relaxing bedtime routine (I do this part well)
  • Use your bed only for sleep and sex (well, the sex part at least works)
  • Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature (no problem here)
  • Limit exposure to bright light in the evenings (no problem here either)
  • Turn off electronic devices at least 30 minutes before bedtime. (oops, big problem here!!!)
  • Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack. (I’m okay with this one)
  • Exercise regularly and maintain a healthy diet. (I do okay with this too)
  • Avoid consuming caffeine in the late afternoon or evening. (I sometimes mess up with chocolate)
  • Avoid consuming alcohol before bedtime. (I don’t drink)
  • Reduce your fluid intake before bedtime. (usually not a problem)

One thing I have been trying lately is listening to sleep meditation music. There are some really relaxing ones out there that work on the Delta Waves of the brain and you can also find good Apps for your phone. I have an iPhone and one app in particular that is receiving great reviews is CALM by Apple. The other is Spotify which has wonderful playlists of calming music already set up or you can create your own from the many tracks available. I love listening to sounds…the rain falling, trains in the distance, things like that, so I love that option with Spotify. YouTube also has many videos of sleep meditations and if you use a YouTube to MP3 converter, you can also download these to listen to on your phone, whether it’s an iPhone or Android.

Hopefully some of these suggestions will be helpful. I don’t want to be sleepless in any city, anymore. I have slept, it’s happened a few times…I’d just like it to be more:

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Collapsed in exhaustion. Notice my glasses are still on.

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?

Pain

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

One Is The Loneliest Number

Living with Chronic pain is lonely.

I’ve been very lucky in my life with chronic pain in that I have a wonderful support team. My husband is amazing – he truly gets it and understands what I’m experiencing as he’s starting having some chronic pain issues of his own. My kids are terrific too and are my biggest cheerleaders. I’ve been blessed with amazing friends who are sympathetic to what I go through on a daily basis, and who understand when I need to cancel plans at the last minute because of my health.

But I’m lonely.

Chronic pain causes you to isolate yourself because you hurt so much all the time, you just don’t want to be around people, yet you don’t want to be alone either. You never know when a flare is going to happen, so you tend to not make plans because you don’t want to be that flake who is constantly cancelling things. I’d rather try and make spontaneous plans but it never feels spontaneous to me…it actually feels desperate. And nine times out of ten, when I do make plans, I end up cancelling them because I wake up on the day of the big event feeling horrid. It’s generally because I’m exhausted as well as being in pain, but no amount of napping is going to make me feel well enough to go out. Of course, if I didn’t have plans that day, I’d have slept just fine the night before. It seems that I’m busy sleep stressing about the date, knowing I’m going to wake up feeling crappy, and then sure enough because I’m sleep stressing…I wake up feeling crappy! And even though I have great friends, I’m sure they must get tired of me flaking off all the time too.

It’s even harder when the people in your life don’t “get it”. This quote comes from Stephanie Schwerin Uplook from a Facebook Fibro Group I belong to and is used with her permission.

This is what she had to say:

Fibro sucks…having family members that don’t get it and don’t listen to one word you say when you try to explain how and what you feel. It’s not cancer, it’s not something they know anything about, it’s not terminal, it’s not that bad. You look fine…I’m really tired of being brushed off like it’s not that big of a deal. They don’t know how bad it can feel, the physical and mental toll it takes on me. No clue, no sense in trying to explain it. This last flare lasted a week and it was bad yesterday and today I’m tired and sore, I feel like my body is trying to recover from the flare, depression has kicked in. I’m wondering if this is how the rest of my life will be.

You know what’s the most aggravating?? I’ve changed so much of my lifestyle to get rid of this crap and I’ve seen no change. I swim every day, I have weights for the pool, I watch what I eat, I’ve researched and researched, I walk most days, I take magnesium supplements and I’ve seen a Rheumatologist at the Mayo Clinic. Those are just a few of the things…and for everything I’ve done, it seems to be getting worse with every flare. That’s depressing. I’m 49 yrs old and to watch me get out of a sitting position after only 5 mins of sitting, you would think you were watching a 90 yr old. My husband can’t believe how quick my body locks up, even after I’ve been in the pool for an hour or how I can’t turn over in bed once I lay down. Getting up out of bed is another struggle…I’m so tired of this crap. I really don’t talk much about how and what I feel anymore with anyone. I get tired of hearing myself complain about how I feel, I’m sure they do too. I mostly have a good positive attitude and can deal with this but today, I’m tired, I’m tired of all of this.

Wow…that’s painful to read. But it happens to most of us and if you’re reading this and you have Fibro or Chronic Pain of some type, you’re probably nodding your head and recalling when this has happened to you.

Lately, most of my mornings have started off with a good cry…I’m 56 and it just hit me recently that this is NEVER GOING TO GO AWAY. No matter what I do, or how good I treat my body, this Fibro is never going to go away and in fact, will probably get worse as time goes by.

That’s a thought worth getting depressed about. How does one stay positive when that’s what you have to look forward to…nothing but more days of pain and exhaustion and the people you love not understanding you, so you continue to feel guilty about having a disease like this, like it’s your fault somehow.

All I can say for sure is that it’s NOT your fault, and you have to take as good of care of your body as possible and not let the words of others hurt you. They mean well, but they don’t understand what it’s like for us, because there is no way to make them understand. No description we give them of Fibro can possibly come close to actually living it. Just do your best to keep your spirits up, try not to blame them and do what you can to stay as healthy as possible. Find as many comfort measures as you can on the days you feel the worst and make a list of all the things that are good in your life so you can refer back to it on your really bad days. Those are the things I do. I also try to reach out to help others as it takes me out of my head and puts me into “action mode”.

So what do you do when it comes to loneliness? What do you do when you need help? My dear friend Brenda Teichroeb Heywood suggested this particular blog post today. She is a single mom of 7 children ranging in age from adult to 3 and is going through a very difficult situation right now plus getting ready to move. She had this to say:

“I have always been the type of person who did not want to barge in during a sensitive time for someone. In their pain, I did not want to bulldoze my way in and then expect them to be grateful for my “help”. Yet, here I am, desperate for help in this very drowning experience and so many are sitting back and waiting for me to tell them what I want. I am just so overwhelmed, it would be better for someone to just jump in. I wonder if it would be a helpful post to write to those who live with or know people to struggle with chronic pain. Is it better to jump in and help the person? Is it better to respect space and wait?”

I responded back to her:

“Sometimes the people able to help just don’t know how to. Personally, I think people stand back waiting to be asked because they don’t want to interfere with or disrupt a person’s life. They don’t want to intrude. It’s like saying “call me if you need anything”. They’re willing to help, but the onus is on you to reach out for it.”

And she replied:

“It’s hard. To be so exhausted and then still do the asking. One friend has offered over and over that she’ll help me in any way. I’ve asked multiple times for help with packing and sorting and she has yet to show up. Sigh. This is not for forever, but I’m worn thin. And I think the little girl in me just wants to be rescued. Maybe what we need from others is a person by person thing or season by season.”

Isn’t that how we all feel…like we want to be rescued? Yet the only person who can truly rescue us from loneliness is ourselves. If no one knows how we’re feeling, we can’t blame them. And if no one “gets” what we’re going through, we either have to keep finding ways to explain it or realize that perhaps they just don’t want to get it. Maybe they don’t believe us, or maybe they’re too overwhelmed with what we experience. We frighten them with the intensity of our pain and fatigue and finality of this disease. They know it’s never going to end just as much as we do, but they don’t know what to do or say, so they do and say nothing. Or if they say something, it’s a joke. Or a nasty comment. Defence mechanisms come in all shapes and forms, so we can’t take it personally or we’ll go mad.

Loneliness goes hand in hand with Chronic Pain and Chronic Fatigue and all Invisible Illnesses. It’s up to us to learn how we want to manage it. Do we want to reach out to others or have them reach out to us? We need to communicate that to the people we love, so they know what the expectations are. You’d be surprised how many of your friends may be sitting there, waiting for you to call to say you’d love to get together with them – and they’ve just been waiting to hear from you to give the go ahead.

One is the loneliest number but it doesn’t have to be. Pick up the phone, send an email, say hi on Facebook…do whatever is easiest, but make a connection soon. Turn your one into two.

There is always hope.

August Link Ups

August Link Ups for A Chronic Voice

I’m taking part in my very first Link Ups on the blog A Chronic Voice.  Sheryl is the Authoress of the page and she hosts these online parties every month, providing 5 word prompts to help get us writing. We’re allowed to submit one post per month utilizing these prompts, so I thought I’d give it a go.

Prompts for the Month

  1. Figuring
  2. Completing
  3. Boring
  4. Cuddling
  5. Chatting

1.Figuring: I spend a lot of time figuring out what I want to share with my readers when I’m writing up new blog posts. A lot of my posts have to do with my own personal health, but sometimes I switch things up and share about other things, such as our pets that bring us such comfort when we’re feeling ill, or about body image or feeling invisible. But I often wonder if that’s what my readers want, or if they want more generalized posts about Fibro and Invisible Illnesses, so I second guess myself a lot. I’m a fairly new blogger, having only seriously been at it for the last 3 months now. I think my best bet is to mix it up and include a variety of posts and see what type of comments and traffic I get and just decide from there if I’m doing the right thing.

2. Completing: When I’m in pain, I tend to start a lot of different projects to keep my mind busy, but I’m not always good about completing them. I have half done crafts all over the place – artwork I’ve started and never finished, a multi-media piece that I don’t know what to do with, beads that I want to make something with, polymer clay that I want to create with, crochet needles and yarn that I bought to teach myself how to make a scarf and a needlepoint kit of a cow, because I love cows. I need to learn how to focus on one thing at a time, complete that particular project and then move on to something new instead of having 6 different things going and none of them being worked on.

3. Boring: Being housebound because of Chronic Illness can be awfully boring sometimes. You wouldn’t think so with all the things I have that I could be doing, like all the projects I just mentioned. I could also be watching Netflix or reading a book or making a coffee date, but here’s the thing…most of the time, I hurt too much to consider doing much of anything at all. I try not to complain to anyone, least of all my husband, but most days, I start off by having a wee cry. The rest of the day is basically one long blur of bore with each day the same as the one before. I’m always up super early because I don’t sleep well, I spend a lot of time on Facebook, I work on my blog, I play a few Facebook games, I spend time with our cat Dorie, and I wait for the mail. Hubby comes home, we have dinner, he goes to bed fairly early, I do more on Facebook or my blog and finally, around midnight, I try going to sleep, just to wake up at 4am to start all over again. Boring!

4. Cuddling: I am 5’2″ tall and my husband Ray is 6’5″ tall. You wouldn’t think so, but it makes for perfect cuddling!  When I hug him, my ear is right at the level of his heart and I can hear how his heartbeat quickens when we connect like that. Laying together, we fit like two perfect pieces of a jigsaw puzzle, each body part meshing with the other. We spoon together, I snuggle up to him – no matter how we cuddle together, it’s always a perfect fit.

5. Chatting: I love chatting online with people and the one thing I can honestly say about myself is that I love to help other people. I stay up to date on current affairs, but mostly, I’m a counsellor. I like to listen to people and it seems they naturally like to share their problems with me. I’ve lived an interesting life and have a lot of common sense, so I enjoy offering them good old fashioned advice like Ann Landers. That’s why I was delighted to find websites like Quora and The Mighty  – they’re perfect for me. I’m able to share my knowledge and wisdom with others while learning at the same time.

So, there we have it, my first attempt at the Link Up Challenge! I hope you all enjoy the read and decide to follow me for more of my posts. Just click the little “follow me” button on the right side of the page and voila! you’re done! You’ll get an email every time I post something new.

Thanks for your ongoing support. I blog to share my thoughts, to educate the public on Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness and to give from the heart. Remember…

There is always hope

Controversial Debate

Welcome!

I want to get controversial today and I’m even going to throw in a disclaimer that this post is my PERSONAL opinion. I have no affiliation with any of the organizations mentioned within.

I was recently involved in an online Facebook discussion that got pretty heated. What was it about you ask? Well, let me ask you a question…

Is there a blood test to diagnose Fibromyalgia?

The answer is NO.

Is there a lab test to diagnose Fibromyalgia?

The answer is YES and NO.

WHAT????

How can there be both? Well, I’m going to explain it to you and when I’m done, you’ll see how wording can make you believe both things. Before I do though, I’m going to give you the correct answer. As of right now, today, there is NO blood test that definitively diagnoses Fibromyalgia. Not according to the Mayo Clinic, Johns Hopkins or any other leading hospital in the United States.

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First off, let’s get something clear about Fibromyalgia. Fibro is NOT an inflammatory disease. 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.

The big test that everyone talks about when they say there’s a lab test that DOES diagnose Fibro comes from EpiGenetics. It’s called the FM/a test and it shows some promise that it could potentially diagnose Fibro. They say it does that now, but I say in the future. This article from Healthline explains it in more detail but it’s important to note that more clinical trials need to be done before we can trust this test to be the definitive lab test we’re all waiting for.

Here comes your Science lesson. This FM/a test looks for chemokines, which are a family of small cytokines, or signalling proteins secreted by cells. Some chemokines are considered pro-inflammatory These are formed under pathological conditions (on pro-inflammatory stimuli, such as IL-1TNF-alphaLPS, or viruses) and actively participate in the inflammatory response attracting immune cells to the site of inflammation. But as I said above, Fibromyalgia is NOT an inflammatory disease…so how is this blood test going to be useful other than by process of elimination? And by that, I mean it’s going to rule out all the other diseases that DO have inflammatory responses, such as Lupus, MS, Rheumatoid Arthritis, etc.; basically, all the auto-immune disorders, which would have already been ruled out by the doctor through a regular panel of blood work.

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The way Fibromyalgia is diagnosed is by using the traditional Tender Point test. There are 18 tender points on the body of a person with Fibro:

fibromyalgia-disease-overview-18-638

As indicated, having 11 of the 18 Tender Points is considered a positive diagnosis. This is the ONLY way Fibro is diagnosed, after all other possible conditions have been ruled out, such as arthritis, lupus, MS, etc.

This Tender Point test has been accepted as the gold standard in the medical community for years and will continue to be utilized until the medical community itself accepts a blood test as the new standard. That may be the test from EpiGenetics or there is one being developed based on RNA, not DNA, by a company called IQuity. They call their test IsolateFibromyalgia and you can read about it in this article.

EpiGenetics has developed their test and are marketing it aggressively, but it hasn’t been endorsed by the major hospitals like the Mayo Clinic or Johns Hopkins, etc. or by doctors who treat Fibromyalgia. It’s accepted in most States, as well as in Canada and several other countries. Insurance and Medicaid will cover it in the US, but I don’t believe there is insurance coverage anywhere else, so you have to pay $1080 for the test, plus possible shipping fees to their California Laboratory and it takes a week to get results. In my opinion, that’s a lot of money for something that doesn’t have the support of the medical community.

For people with all the symptoms of Fibromyalgia, one of the most complex of the Invisible Illnesses, in my opinion, the future could be looking a whole lot brighter a whole lot sooner than we think. Instead of having to rule out multiple other conditions, a simple blood test will be able to help your doctor determine if you have Fibromyalgia, which means treatment can start sooner rather than later. Who knows…perhaps once we have a test to determine if you have Fibro, it won’t be long before we have an actual treatment for it too! One that really works, not just masks the pain or other symptoms for a short period of time.

Your best weapon against Fibromyalgia and all Invisible Illnesses is education. Stay up to date with information from trusted sources like the Mayo Clinic, Johns Hopkins and Healthline. Labs like EpiGenetics are focused on their own work and will be biased toward their own product so be aware of what they’re saying and why. They have a product to sell you and that’s their agenda – to make a profit. Keep that in mind anytime you’re researching information and ask yourself; what’s in it for them and what’s in it for me. The answer to that question can save you a lot of grief and controversy.

Remember, there is always hope.

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.

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.

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!

Wishing While I (Don’t) Work

It’s Monday, and I wish I was at work.

Now a lot of you are probably thinking I’m crazy, and I am. While you’re getting up early in the morning to face the rush hour commute to go to a job you may not even enjoy, I could still be snuggled in my bed, fast asleep without a care in the world, right? Well, that’s the scenario you probably have in your head, but it’s far from the truth. As a Person with Chronic Pain (PwCP), I’ve probably been awake half the night because pain wouldn’t let me sleep; every muscle feels like concrete and every joint feels like someone has twisted it, put it into a machining vise and then clamped it three times tighter than necessary.

My brain hurts too…I want to be going to work with you. I loved my job prior to going on Long Term Disability (LTD) and the jobs I held before that. I was an Administrative Specialist at several different companies, mostly supporting Retail Operations and the people who managed the work; Directors, District Managers and Store Managers. In the past, I’ve worked for Rogers and Bell and my last company was The Forzani Group, now known as FGL Sports.  I supported the group that ran the former Sport Mart stores (now closed), but am still considered an employee of FGL Sports while on LTD.  I receive an employee discount and recently celebrated 10 years with the company.

I worked with an amazing group of people. I loved going into my job every day, knowing it was going to be challenging and fun and never knowing exactly what the day might bring. I organized team training events for Store Managers, travel and training for the District Managers, travel for the Regional Manager Rob Hillier and kept the Director, John Hould on track for his daily activities.

Then came the days when work started to become difficult. Too difficult. I had been doing all of this under the radar of Invisible Illness, which none of them knew about but it was starting to become an issue. Things that used to come easily to me became a struggle. I was famous for remembering things without needing a list and suddenly I was carrying notebooks with me because the Brain Fog was so bad. I would stop conversations in the middle of speaking because I forgot what I was saying. My pain levels were getting higher and higher but I refused to use a cane at work for my bad hip to ease the pain as I didn’t want to be perceived as being weak or incapable of being effective (this was prior to my right hip replacement). I couldn’t concentrate during meetings and even typing became a challenge – it still is to this day.

Once all the Sport Mart stores were closed, there wasn’t really a job for me any  longer, so the HR department encouraged me to go on Short Term Disability while I figured out my health issues. Short term became Long Term, and I never went back. My last day of work was in October of 2009. I started with the company in February of 2008. That’s right…I’ve been on Disability with FGL Sports for over four times longer than I worked for them. It was distressing for me to have to leave, because I loved the work and I was very good at what I did. My identity was wrapped up in my work and had been since I first started my career in 1991. When I found myself at home on leave, I didn’t know what to do with myself. I slept a lot in the beginning which was healing, but after that, I didn’t know what to do. I felt invisible, as I’ve discussed on this blog before. And being invisible can be a very painful thing. People accused me of not wanting to work, that this was an extended vacation for me, and that was really hurtful. If they could see inside me, they would know how very much I wanted to be back at my desk, with meaningful work to do. The mistake I made is that I didn’t go around complaining about my health at work, so no one knew how badly I was hurting except for a couple of select people in HR, plus my bosses John and Rob. 

I’ve asked my friend Tori Martin if I could share a quote here that she recently posted on Facebook and she graciously gave me her permission. This is what she said:

“STOP suggesting that people with disabilities of ANY kind just aren’t trying hard enough.

There are VERY few people who don’t want to work and contribute in a meaningful way according to society standards. Additionally, being able to work is NOT the ultimate measure of a person’s worth. Frankly, I am much more impressed at how a person treats others than what kind of work they do.I myself am unable to work due to physical limitations and it drives me crazy sometimes. Guess what though, I still have an incredible amount to give! I contribute to society through my photography, through having a huge heart that shows so much love and concern of others, through helping others, through occasional teaching of archery which helps many find confidence and enjoyment in physical activity. I contribute by paying taxes, voting, getting involved in local groups and causes and supporting local businesses. I am NOT a waste of space. And not that it’s anyone’s business, but I worked from the age of 10 until I was 39 and was literally bed-ridden for 2 years. My dr’s have been trying to help find ways of giving me back quality of life and things are so much better than those first two years, but nowhere near where they need to be to hold down even a part-time job. Telling people with mental or physical disabilities they have no worth if they can’t work is b*llshit and needs to stop. I am disgusted to have to say this after reading comments on a friend’s post. Apparently compassion and empathy is something that some folks just don’t have.”

 I think Tori really nails it with that comment. She lives with Rheumatoid Arthritis that really affects her hands and I know for a fact that she would love to be working if it were possible. Her friend John Hewak responded with this reply to her post: 

 “What makes it worse is that we feel the need to justify ourselves, due to both real and perceived judgement from others. People say things like “must be nice”, or “how can I get that?” Well first get f*cking sick, really sick, lose almost everything, navigate the tortuous and torturous health system, marshal up a posse of docs, specialist, therapists etc who validate you, get a lawyer, get on welfare, go through the painful application procedure and wait months to hear back while you sink into poverty. Most applicants are rejected first time . Repeat and rinse. If the institutional, bureaucratic, legal, and medical stars align, you might be accepted, in which case you get $1,000 to live on monthly., while you struggle with pain and alienation on a daily basis. Try that for a while. Wow, it’s so great not to work! Living the life of Riley.”

And finally, a third friend named John Poulson replied:

“I have found that people who give the most are the ones who have experienced hardship the most. People who have never experienced hardships have absolutely no idea or clue of what life really all about. It’s not about “things” but the experience you lend or give to others. Having compassion and showing that there are people out in the world that do care. Live; love; laugh. It’s the tears that makes one appreciate the good things in life. That’s my motto. ❤️❤️

It’s hard to be at home when you’d rather be out earning a living. Everyone thinks we have it so great, but when you’re housebound and feeling like crap, there’s nothing fun about it at all. We tend to be forgotten by our friends and sometimes our family members as well. We don’t get to go out and do “fun” things whenever we want – our time is generally taken up with Doctor appointments or physiotherapy treatments, etc. anyway.

So, to wrap this up, don’t forget your friend or family member who lives with Chronic Pain from Invisible Illness. Call them, ask to stop by for a visit, or to take them out of the house for a bit, whether it’s for lunch, or just a drive. They will let you know what they’re up for and how much energy they have. Even if they say no and they’d rather stay home, just keep in touch. That’s all we’re asking for. And don’t assume we’re being lazy. Trust me…most of us would rather be working if it were possible. 

At least I would. 

Remember…there is always hope.