May 12th International ME/CFS and Fibromyalgia Awareness Day

My story started many, many years ago... almost 30 to be exact. 

One morning, at 15, I woke up and couldn't walk... literally. After many tests and some very scary waits the results came back as... nothing. Nothing?!? Over the next few years debilitating pain would bring me to a crashing halt but it would only happen once in a while with months in between episodes. I learned to live with it... after all, it was nothing right?!

In my 20s during the height of motherhood I continued to live with muscle tightness, weakness and days when I was exhausted beyond tears. On top of it, I suffered from post-partum depression. I often found myself with no help and not knowing how to continue. But I had two young children and had no choice but to get up everyday and get things done.

Fast forward 10 years, I'm now in my 30s, my kids are taking care of themselves for the most part, active in sports. I have gone through being a single, working mom to marrying an amazing man who wants nothing but to take care of me. Which turns out to be a god-send. The day to day pain gets worse. Weekends end up being spent burned out on the couch. I don't remember if I've ever known a good nights sleep. Some days I walk like a 90 year old man... actually, they are more spry than me. I have burning pain up and down my arms and legs, nerves jump constantly. 

To date, the doctors still can't find anything. For lack of a diagnosis, they assume arthritis that has not shown itself in blood work yet. They load me with anti-inflammatories and send me on my way. Nothing helps and I'm not going to fill my body with drugs that can cause organ problems further down the road. 

I start researching natural remedies for chronic pain. I suspect I have fibromyalgia but I can't get a doctor to listen to me. Some things help, like ginger, but only for a short time. I go through one thing after another. I just keep working, keep pushing through the pain. I suffer, sometimes in silence, sometimes not so quiet.

Then in my 40s there are more bad days than good. The pain becomes excruciating, the exhaustion incapacitating. I'm getting really tired of fighting, really tired of not feeling normal... though I don't know what normal is anymore!!

But I find a doctor who listens to me. She believes me!! She doesn't think I'm crazy or that it is all in my head. She starts by giving me gabapentin... which works. I feel quite well for about 3 months, then the pains start coming back so we up the dosage!! Feeling great again... for about 2 months, so we up the dosage again! It just keeps going and going. I've also started taking an anti-depressant to help with the anxiety and worry that comes with the constant pain and losing my ability to live the way I want to.

In the meantime, she has referred me to a GP that specializes in chronic pain. I visit with this doctor for 3 years. She officially diagnoses me with fibromyalgia. She tries to get my sleep on track and does better than anyone else has in years. She gets my diet adjusted to increase proteins, lessen sugar, discovers I have a lactose intolerance. She teaches me many things for pain management and tries to get my life back on track. She is successful in more ways than not. But I still have many days of awfulness.

Then in early 2013 after an accident, a series of UTIs and two major respiratory infections within 2 months, I develop Chronic Fatigue Syndrome. I find myself falling to sleep at work!! No matter how much I sleep, I'm always exhausted. I feel like I have the flu all the time!! I barely have the energy to do my job, forget doing housework or cooking dinner. 

Jay and Brittany jump in and do the best they can by me but they can't make my emotions stable. They can't make me not feel like a failure, feel like I'm not contributing, feel like I'm a disappointment.

Every illness, every accident, every stress causes a set-back!! I end up back at stage one every time. 

Now I am on Lyrica. I have got the sleep thing almost under control with natural things but mostly good sleep habits. Still on anti-depressants and still have daily pains of at least 6... on bad days they hang around an 8. I still have days where I can barely be coherent, where I can't do more than stay bundled on the couch praying for the pain to end.

I reach out, I volunteer as a group leader on a support site. I try to offer what little wisdom I have about these illnesses. I advocate for myself and others suffering from chronic illnesses such as fibromyalgia and chronic fatigue. I research, I read, I learn and I hopefully educate. 

The truth of the matter is, there is no known cause, so there is no known cure. The treatments are for symptoms only, to give the patient comfort, not to treat the actual disease.

That is why days like today are so very important. If we do not start making people more aware about this disease it will stay in the shadows and the research being done on it will remain almost non-existent. If you consider there are over 35 million people in this country and over 1 million of them are afflicted with this disease, can we really afford to stay invisible??

#12MayBlogBomb

More big changes... funny how life works

I was reading over some old blogs and it is funny how you grow, how your opinions change and how with that your pain treatment and management changes.


2013 was not a very good year for me. Between illness, increased work stress and developing Chronic Fatigue it was a complete write-off. Pains were higher than ever, sleep was lower than ever and I felt that my life (well at least the health part of it) just generally sucked.


In light of this, I have made some changes.


Unfortunately, we still haven't figured out what is causing the chest palpitations. I'm not sure if they are getting better or if I'm getting used to them but they still exist, they still cause me issues. The cardiologist did all the tests he could think of and couldn't find the cause... without a cause you can't have a treatment. So I'm trying to learn to live with it. They are worse at night... when I should be preparing for sleep they get pretty ramped up but seem to calm down within an hour. I watch my caffeine intake and try to get as much rest as I can. I haven't quit looking into it but there is just nothing to be done for it right now.


In an earlier post, I mentioned how the medications most commonly used for treating fibro are so bad for you. Well I lied. The end of 2013 beginning of 2014 found me desperate for some relief. We started Cymbalta which I did not take to well at all!! There were such serious side effects within the first week that I didn't progress with it after that! I am now on Lyrica which I am finding is helping. My codeine usage is down considerably, my pain levels have gone from 9 & 10s to 5 & 6s so I'll take it. Still taking the Effexor to help with the emotional side of  things. I do have high hopes that I will live without these drugs someday... but not today. Today I need all the weapons in my arsenal to feel better... and that's okay too.


With acceptance of any disease you find peace. You find a way to still live an amazing life. That is where my focus is now... finding peace, acceptance and still having a high quality life.


And you know what? Life is good. I have a great family, I have great friends and they are now my focus. I've let some relationships slide over the last couple of years due to lack of energy and increase in pain. And it is the relationships that keep us strong, keep our hearts full, give us a reason to carry on.


So I made the biggest decision of my life... and that was to leave my job. After 17 years with Keystone I decided to leave. Though all my best friends are there, there was also a lot of stress. It isn't easy trying to help a floundering company when you are ill. I just couldn't do it anymore. And it was the best decision of my life. It is early days (only been gone for 4 days so far) but I already feel a lightness in my being. I don't feel the begrudging... gotta get to work feeling I was having for a long time.


So now I can spend my days visiting with friends, seeing my kids. Refilling my heart, rebuilding relationships and making the quality of my life better, stronger, more fulfilling.


It wasn't an easy decision to leave my job. Not only were there the financial worries of leaving but there is that sense that you're doing something "wrong" by not working. There is always that little sense that the disease is getting the best of you. But I'm choosing to focus on the positives. I'm not going to be as stressed, I can get rest if and when my body needs it, not when the clock allows it. I can fill my heart and soul with volunteering, visits with friends and helping people. And that is good.


So with all of that, we move forward. We live to fight another day. I'm now living with fibromyalgia and chronic fatigue not against it and I truly believe that life is good.

Visceral Manipulation

Well today was certainly an interesting day.


Doc had sent me to a new physiotherapist due to all the back pain I have been having... she isn't your typical physiotherapist!!
 
First, her office looks more like a massage therapist or chiropractor. She had me stand with my back to her and started doing all these measurements and touching me all over!!
 
Turns out, this lady does visceral manipulation and craniosacral therapy. Interesting concept (taken from her brochure):
""Viscera" relates to the internal organs of the body such as the liver, kidneys and intestines. Visceral Manipulation is a gentle manual therapy that aids your body's ability to release restrictions and unhealthy compensations that cause pain and dysfunction. Visceral Manipulation, or VM, does not focus solely on the site of pain or dysfunction, but evaluates the entire body to find the source of the problem. The VM therapist feels for altered or decreased motion within the viscera, as well as restrictive patterns throughout the body and then applies VM techniques. VM therapy re-establishes the body's ability to adapt and restore itself to health."


So turns out that my whole right side is sitting higher than my left. I have much less movement in my left side and the top ribs barely have any space between them I'm so scrunched up.


So she did a lot of these manipulations, small palpitations in the tummy and abdominal area, actually moving ribs around etc. She even did some manipulations in my mouth on the roof and top teeth!!Some of these manipulations were quite painful while they were happening but surprisingly I'm not hurting right now.


She made no promises that she could "cure" either the FM or CFS but she is hoping to help increase my energy, is hopeful that she will end the heart arrhythmia and is quite confident that my back pain will be eradicated.


Hey, I've tried everything else to no avail so I figure... what the heck! And because she is a physiotherapist all the appointments are covered under my insurance! It can apparently take up to 10 days for visceral manipulation to show changes so appointments are usually every couple of weeks and most people only need about 5 appointments to be feeling better.


I will keep posting my progress (or lack thereof) and let you know how it goes. Who knows... just may be someone's answer to pain relief!

Acceptance and what it entails

It has been a long time since my last post and a lot has happened since now and then. You will note that my blog is no longer called Curing Fibromyalgia but is now Living with Fibromyalgia and Chronic Fatigue.


The pain and fatigue that started developing in March of 2013 continued to kick my butt. I got more and more tired, the pain became more and more debilitating and I hit some emotional all time lows. I developed a heart arrhythmia that had me very frightened and left me worried what my future held.


I went through a lot of tests: more blood tests, a lot of heart tests, x-rays, ultrasounds, specialist appointments.


Pretty much it all came down to nothing... well not nothing... pretty much we have added a diagnosis of Chronic Fatigue Syndrome to the already diagnosed Fibromyalgia.


It was a pretty hard hit and I needed to sit back and lick my wounds a little and try to deal with the additional emotional fall out that followed. On top of it all, my amazing doctor, Dr. Lassila switched clinics. So I also felt like I had lost my biggest helper in dealing with this illness.


But nothing keeps me down for long, and as with everything my need for education increased.


I attempted some behavioural therapy but it wasn't a great fit so I only attended a couple of sessions. I joined an online support group called MD Junction which I continue to visit as a way to educate myself and learn from others travelling the same path.


While cruising some of the posts on MDJunction I came upon the following post (some of the text has been eliminated for space but you can find the full article at http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions/general-support/10898349-how-the-a-swear-word-is-not-giving-up#10900626):


Acceptance for Living With Fibromyalgia
How Acceptance Can Help With Managing Your Illness
By Adrienne Dellwo, About.com Guide

A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about.

When you're adapting your life to chronic illness, it's normal to go through a grieving process, just as if someone close to you had died.

The final phase of the grief cycle is acceptance. Some people confuse "acceptance" with "giving up", but acceptance actually is a means of looking at your situation realistically so you can set reachable goals.

The physician-trusted website UpToDate examines the need for acceptance in people living with FM. An excerpt from UpToDate:

"Acceptance of chronic pain is a coping strategy that includes both direct action and passive components that may be particularly helpful to patients with FM. This strategy involves (a) acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain; (b) acceptance of the need to shift one's attention from pain to non-pain aspects of life; and (c) such acceptance does not signify personal failure.
"Indeed, acceptance of persistent pain may be necessary for individuals to stop searching for treatments that provide complete relief of pain and begin to adopt changes in their behavior that may help them to better manage persistent pain and improve their quality of life."


Working Toward Acceptance
"Acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain."

You might ask, "Isn't that pessimistic?" Sadly, no -- it's realistic. So far, we don't have treatments that completely eliminate fibromyalgia pain, and no existing treatment works for everyone. It's likely that those of us with FM will have to live with some degree of pain, possibly for the rest of our lives. That doesn't mean that we have to accept living with severe pain. Instead, it means that we shouldn't expect any single treatment to alleviate all of our pain and other symptoms.

A more realistic goal is to find a combination of treatments that, together, lessen your symptoms and help you increase your functionality and quality of life.

It may be disheartening to think about living with pain forever. After the kind of pain you've experienced, though, think what a difference it would be to just have mild pain. Once you stop expecting the next treatment to be "the answer", you can start being happy about making small improvements, one at a time, that eventually add up to making you feel a lot better.

"Acceptance of the need to shift one's attention from pain to non-pain aspects of life."


No doubt, this one is hard. FM pain can demand your attention and, especially when combined with fibro fog, can make it hard to concentrate on anything else.


Things that can help distract you from pain include video games, hobbies/arts and crafts, reading (when fibro fog is bad, try a magazine or short stories), or anything else that you can enjoy without making yourself feel worse. The more your brain is engaged with what it's doing, the more successful you're likely to be, so TV and movies may not be very effective.



The quote above talks about acceptance versus catastrophizing. Catastrophizing is a distorted belief that things are worse than they are, or that the situation is hopeless. People who catastrophize may feel like they'll never get better, that no treatment will ever be effective. Research demonstrates that people who accept pain do better than those who catastrophize.

"Such acceptance does not signify personal failure."

It's important to remember that acceptance doesn't mean giving in to your illness, nor does modifying your life because of it.

For example, when I was diagnosed with FM, I was determined to keep it from changing my life. I continued working at a very stressful full-time job that kept me in a near-constant flare. My life consisted of working and trying to recover from work -- which meant laying on the couch, on pain killers and still in agony. Once I accepted that I had to make some changes and manage my FM instead of fighting against it, I was able to make the changes that have allowed me to improve. I left my job, and that felt like failure. However, my decision allowed me to be more successful as a wife, mother, friend, and overall person. I also recovered to the point that I could work from home.


And this is where I currently reside. I have accepted that I am ill... there is just no denying it. I am, however, still in the decision making part of the process.


I am still working full-time; which means my evenings and weekends are usually a write-off as I lie on the couch trying to recover from work and building up my energy to work another week.


There are a few things that are keeping me from making the decision to quit working altogether or to go to part time work. The most obvious of this is financial... it is very difficult to give up that pay cheque; especially when my family relies on it so much. Coupled with that is finding someone at work that can take over the tasks that I would no longer be able to do. And that will be a discussion between me and my boss and co-workers when I am ready to go down that road.


For now, I'm learning to say no to things I'm just not capable of doing. Getting my much needed rest when I can. Building up energy so I can continue to enjoy things like family gatherings and outings with friends.


I have found Dr. Lassila again and we are working on lessening my symptoms... with some success!


So now that I have come to the final stage of grief... acceptance... I can begin to feel better.


So future blogs will contain some of the things I'm doing to feel better... I will share my successes and my failures. I started this blog in order to educate and help people on their journey and I hope that I can continue to do so.


Thanks for taking the time to read this rather long blog... and thanks for following.


Brightest Blessings!!