Thanks to Seeking Equilibrium, I discovered FibroGuide. FibroGuide has a modules with great information for those newly diagnosed and those of us who have had fibromyalgia for what feels like forever. You take a simple quiz and it points you to the modules you may find most helpful. Examples of modules are Understanding Fibromyalgia, Fibro Fog, Being Active, Communicating, Sleep, Pacing Yourself, and more. It’s got a lot of great information and I really like how it’s organized. With the quiz, you are quickly pointed to the resources you may find most helpful and don’t have to go digging through a ton of information for the tidbits that are the most relevant for you. I don’t know about you, but my attention span is short and my thoughts are easily scattered so I found the way this site is organized to be very helpful. Check it out!
I’ve gone through a “roadkill tired” spell myself of late. I think I’m finally coming out of it. Adding a Vitamin B and iron supplements to my daily mix of supplements seems to be helping me feel a more normal level of tired, not the bad roadkill tired I’ve been doing. My brother actually figured out that it sounded like I was iron deficient. I definitely notice a difference now that I’m taking it. Thanks brother!
This post on chronic fatigue as it relates to fibromyalgia and other chronic illnesses is really great. She highlights ten common suggestions doctors make to help decrease fatigue and how most of them really work for fibro sufferers. Our brains just don’t work like “normal” brains and until doctors realize that and modify their recommendations accordingly, we’re stuck with getting the same unhelpful advice over and over. My favorite tip she makes is:
Point number 10: Be good to yourself. There is a lot of guilt and problems that go with chronic illness. We do need to be good to ourselves. This will be with us until there is a cure so we shouldn’t be too hard on ourselves.
I love these graphics. Sometimes the best way to understand a bunch of statistics and data is visually. I know I’m a visual learner. The only thing I don’t like about these graphics is that the statistic on how many women have fibromyalgia should be how many people. Men get fibromyalgia too. This is not just a “woman’s disease.”
I’ve been working through a lot the past year and a half, and perhaps most especially the last few months. I came across this this morning and it struck a chord so I wanted to share. I think of all the lessons I have learned, “You will relapse and that’s okay – as long as you keep fighting,” is the most important. I’ve been frustrated by the feeling that I recover from one physical ailment just to have another one come at me that I have to deal with. Life is a rollercoaster sometimes and sometimes all you can do is roll with the ups and downs as they come. I’ve also learned to get the most enjoyment out of the “ups” as I can. It’s important to enjoy those times while they last. They help you get through the “downs.”
“In the confrontation between the stream and the rock, the stream always wins not through strength, but through persistence.” –Peter Davies
Today is Fibromyalgia Awareness Day! In honor of this, I thought I’d repost one of my first posts discussing what fibromyalgia is. Wear your purple today and show everyone you are a fibromyalgia warrior! #FibromyalgiaAwarenessDay
What is Fibromyalgia?
For those of you who (unfortunately) aren’t already intimately aware of what fibromyalgia is, I thought I’d give a brief introduction to it. Fibromyalgia is also know as Fibromyalgia Syndrome (FMS) and chronic pain disorder. It actually has some links to PTSD, as far as the way the brain works — or rather the way it works but isn’t supposed to be working. Here is the definition of fibromyalgia from the Mayo Clinic’s website. I find that WebMD has some outdated information on fibromyalgia and prefer to reference sites like Mayo’s.
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.
The pain associated with fibromyalgia often is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
- Back of the head
- Between shoulder blades
- Top of shoulders
- Front sides of neck
- Upper chest
- Outer elbows
- Upper hips
- Sides of hips
- Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symptoms.
If you want to read more about fibromyalgia, here is the link to information it through the Mayo Clinic: http://www.mayoclinic.com/health/fibromyalgia/DS00079/
For me, fibromyalgia at it’s best is the “dull ache” described in the information above. I hurt everywhere, all the time. I have trouble relating to people how much pain I’m in. If you’ve never been in chronic pain, then you really have no clue what I’m going through. The closest analogy I can come up with — and it’s a poor one — is having a migraine headache only the headache is your entire body. It hurts to move, it sometimes hurts to breath, sometimes it even hurts to be awake. I have every single “tender point” in the so-called diagnostic test where your doctor pokes you all over and if you yelp in pain to enough of his pokes, then you have fibromyalgia. My rheumatologist did that to me once and it spiked my pain so badly, he hasn’t done it again. He likes to do it at every check up to see how much his patients improve, but for me he doesn’t bother. I can tell him if I’m improving or not and don’t need him spiking my pain by poking me.
I often use the scale of 1 to 10 (1 being no pain and 10 being the most pain you can imagine) to try to tell people, especially my husband and immediate family, how much pain I’m in on any given day. An average to good day is a 5 or a 6 on that scale for me. I always feel the worst right when I wake and as the evening progresses. 10am to 2pm is the best part of the day for me, and unfortunately I spend those hours at work. After 4 solid years of non-stop, chronic pain, you get used to a certain amount of pain. On the good days where I drop below a 5, it’s actually kind of startling to suddenly realize “Hey, I’m feeling pretty good right now. My pain isn’t terrible.” At those times, your inclination is to rush out and do something fun, or something you don’t normally have the energy to do, like go shopping. That’s an urge you have to fight because if you overdo it any given day, you’ll pay for it the next day. Living with fibro is all about balance. Balance in everything. You have to balance the amount of time you sit in one place (like at your desk) with the amount of time you stretch, walk around, and exercise. You have to get a full 8 to 9 hours of sleep each night to balance out the toll the pain takes on you every day. You have to balance out your depression with good emotions to try to stay in the “up beat” state of mind doctors have found leads to the least amount of pain on a daily basis for people with fibro. You have to eat a balanced diet. You have to balance the time you spend working with time you spend on yourself, meeting your needs and your pain’s needs. You have to balance the time you spend with your husband and family with the time you want to spend in bed, exhausted, just giving in to the pain for awhile.
This blog is about my search for balance in life. My path to making the best of my life in pain. My search for the best path out of the mess fibro has made of my life. I’m always trying to make myself feel better, be better. I’m trying to learn to control my pain and improve my quality of life, and thereby improve the quality of life of my husband and those around me who are affected by my fibro. I hope that writing about my experiences and my journey will help me but will also help anyone out there reading this as well.