If you have been recently diagnosed or have a loved one diagnosed with Fibromyalgia (FMS), Lupus, or Chronic Fatigue syndrome (CFS/ME) I would recommend you watch this video. It is about a 15 minute video that gives a fantastic description of what it is like, on a daily basis to live with one of these chronic illnesses. If you truly want to understand this life, this is one of the best ways.
Fibromyalgia Defined: Literally the word means “all over pain”. This pain isn’t like normal pain like you might experience after a good work out or after working in the garden – it is much deeper than that. It’s like having the flu and never recovering. In addition, it is constant – not just when you move a certain way. Most of us can deal with a day or two of discomfort with a sore muscle, but when it is 24 hours a day, 7 days a week, it begins to wear on your mind and spirit. Debilitating fatigue is almost always present, as well.
Fibromyalgia Symptoms & Physiology: Recent studies have shown that FMS is not a rheumatoid disease as it was once believed. It is also in debate as to whether it is an auto-immune disease. What we do know is that it is a neurological disorder. Your brain registers pain signals in order to let you know your body has been injured and a chain reaction of chemical events follow that. With FMS those neurotransmitters are turned on, and register pain, and they never shut off. The brain believes your body has been injured in some way. This causes a release of serotonin, and adrenaline. Eventually, the body adjusts and both of these chemicals stop being produced or are produced at signficantly lower levels than average. The result is sometimes adrenal fatigue, and the inability to sleep. This also causes light sensitivity, noise sensitivity, touch sensitivity, and sound sensitivity. The body becomes a receptor, turned all the way up! If you just want to hug your FMS loved one, please give gentle hugs.
**Update** Please see the post about recent findings in 2013 about FMS patients having an increase in A/V shunts. Research has recently discovered that these not only control blood flow but also contain pain receptors. This is new information for the medical community!
Sleep plays a major role in FMS. FMS patients not only have trouble falling asleep, but also do not enter into the deepest stages of sleep whereby the brian rests and the body restores itself. So there are two battles to wage against this syndrome – one to calm those neurotransmitters, and one to reach restorative sleep. Both of these battles must be addressed in order to find healing and wellness.
In addition to the all over aches and fatigue, Fibro patients often suffer tension headaches, IBS, burning sensations, electric “zings”, and my favorite: muscle twitching. This twitching and jerking also disturbs sleep and seems to be most common while trying to relax. Honestly, it is not only annoying but is really a really strange thinga to experience. I was having a relaxing pedicure one day and it was difficult for the pedicurist to paint my toes because my foot was jerking.
In addition to these day-to-day occurrences, there are also pain “flares”. These are time periods of intense pain that can last for days. Usually they are brought on by stress, illness, weather changes, menstrual cycles, physical activity, or even food.
Fibromyalgia Diagnosis: Finally, there is the whole drama of finally reaching a diagnosis. It can take years. If you are lucky you will bypass the doctors who treat you like a pill seeker or who are not knowledgable enough about the disease to properly address it. DONT GIVE UP. I left my doctor of 15 years because he treated me like a pill seeker. All I wanted was something to help me get through my day, and to help me sleep until we got to the bottom of the problem. He refused. Do not take that as an answer. Doctors who understand will make sure you are functioning while these tests are run.
For those well-meaning loved ones let me answer this on behalf of your FMS person: No, it is not a gluten allergy (although Celiac does often coincide with these illnesses). Yes, we have had our thyroid tested. No, we do not have inflammation (in most cases. If so, there is more going on than FMS). Yes, we have had a whole gambit of blood tests, screenings, and x-rays. On paper, we are perfectly healthy! Maybe a little low on vitamin D, but otherwise there is “nothing wrong”. Fibromyalgia is a diagnosis of exclusion. Once all the possible causes of pain are ruled out, it is what we have left. Testing is being developed that will allow doctors to “see” this neurological activity, but for now, after all else has been looked at, it just a logical assumption. Doctors also check specific pain points or trigger points on the body. (see photo) With their fingers the doctor will apply pressure to these points (just enough pressure that their fingernail blanches) to see if there is acute pain. While everyone has tender places on their body, it’s hard to describe the pain these points cause when pressed. “Acute” maybe isn’t adequate. I always joke with my Rheumatologist that he has a “magic” touch. At my last visit he said that they are adding one to these charts – right beneath the rib cage. I did not react to one in the front, but did to the one under my ribs in the back. Ouch!
Fibro Trigger Points are tested by a physician while determining a diagnosis.
Fibromyalgia Treatment:“Don’t they have a pill for that, now?” Yeah…..no. Yes there are several new drugs available like, Lyrica and Cymbalta. Do they work? Sometimes…not really. While Lyrica does seem to help a lot of people with pain, it also makes them feel off-kilter, drunk, like the world is tilted, and unable to concentrate or use critical thinking skills. Is it worth the trade off to not be in pain? On some days yes, but if you need to go to work, drive, or walk straight, it’s not really an option. Other treatments are pain prescriptions and prescriptions that help with sleep, such as ambien, Xanax, and Gabapentin. Diet changes may be recommended. Non-pharmaceutical treatments such as application of heat, hot tubs, massage are also recommend. It is important to note that some patients can not tolerate being touched so the force of water coming out of a shower head or massage are not options for them. From the perspective of someone who has FMS, it is extremely frustrating to hear all of these things that may, in fact, help, but you are too tired to engage in those activities. When fatigue is present, it is actually too overwhelming to really think about what you are planning for dinner. We all want to “get well”, but until you have walked this road, I know it is difficult to understand.
After the Fibromyalgia Diagnosis: What do you do? You have hoped there is an answer to this debilitating pain and fatigue and the answer you get is “this is permanent”. Wow. Your life has fallen apart. You can’t keep house like you wish you could, maybe you are unable to work. Friends and family may treat you like you are lazy or a hypochondriac. Many do not understand why you can’t make it to their baby shower, dinner, lunch date. You watch as one part of you life at a time falls from your grasp.
- Saying Goodbye to Normal: Take time to mourn your loss. This is a necessary step. Acceptance. In the book “Resilient Life” the author talks about working through this and understanding there is no “going back to”. There is only going forward. For yourself and for your marriage (if you are married) I recommend this book. It teaches you how to deal with a “life crash”. Whether that is the onset of a chronic illness, loss of a career, loss of a loved one – your life has changed, “crashed”, and the normal you once knew is no more. Address that, emotionally, for what it is, and then get ready to take baby steps forward with what has become your new “here”. Resilient Life – Surviving a Life Crash
- What’s Next? So this is your life – you are “here”. Acceptance is learning that it’s time to let go of some things. I was a Cub Scout Den Leader – we were a scouting family. We loved it. I had to let it go. I am so very fortunate that my friends were for the most part interested in what was happening to me and compassionate. They wanted to understand. Most people I have encountered are not that lucky. Many of lost spouses who just could not deal with the ravages of the disease. They want their spouse back – active and happy. They may feel like they didn’t sign up for this life (ummm “in sickness and in health?). This tests that vow. Don’t get me wrong! This is hard for everybody!! My husband is amazing, but dealing with this illness has been a trial even for him. Talk through it, express how you feel. Let them express how they feel. But try not to take it personally. It’s the disease, not you. I recommend some affirmations and the use of an oil blend called “Acceptance“. This oil blend is designed to help promote feelings of acceptance of ourselves and of others, but I could write an entire entry on this topic…maybe that will come.
- You Are Here: Once you get your feet under you, accepting your new “here”, it’s time to start trying to get well. This will be a slow, tiring process, and my hope is that this BLOG will help you. I will share what I’ve tried, what has worked for me and what hasn’t and links to information I have collected along the way. If you have questions that I haven’t covered please message. If I don’t know the answer, I will help you look for it.
Resources: Finally, I would like to share some links to pages and resources that have been extremely helpful to me in my journey. There are thousands of websites dedicated to surviving these illnesses. If you chose to join any group or FaceBook page the one warning I have is to make sure it is a positive and uplifting site. Avoid those sites where negativity abounds. Not only will that not help, it could actually make you more sick. Everyone has their bad days and REALLY bad days and it is nice to have a place to talk about that with others who are compassionate and to get it off your chest without further burdening your spouse or friends with your emotional payload. That has it’s time and place too, but having an alternative outlet is a good thing. Here are my four favorites:
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Fibromyalgia Awareness FaceBook Page – This is a fantastic page with uplifting quotes, new research posts, and tons of information from FMS patients from around the globe.
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The Fibromyalgia Fun House – This is my personal favorite. The page owner is also the mastermind behind the PURPLE PAIN CODE: LILAC-Light MULBERRY-Medium AMETHYST-Awful LMA-Leave Me Alone© www.chroniclesoffibro.blogspot.com This BLOG by the page owner, Leah Tyler is real life, working through this illness. It also has tons of information.
Joyful Oils 