Even my tired is tired!

Even my tired is tired!
This article originally appeared on ProHealth on July 30th, 2015  Link:  ProHealth.com

I remember being a teenager, staying overnight at my best friends and not sleeping more than four hours; and as a young adult going out dancing with my friends until 2 a.m., needing to be at work the next morning by 7 a.m. I thought I was tired then. A few years later, I seriously thought nothing could make me feel more tired than a baby who refused to sleep. One night my husband’s Gramps was staying over. He climbed the stairs at 1 a.m. to hear our daughter crying from her room and to see me at the kitchen table. “I am so tired,” I cried.

Nine years later, I was wishing I was getting as much sleep as I did with that sleepless baby. I had gone months without sleep due to physical pain and emotional stress. I fell into the viscous cycle (no sleep=anxiety/depression=pain) = insomnia.

I went to the doctor in tears. I was just so very tired. After running a lot of tests and finding nothing contributing to it besides the fibromyalgia, I was sent to take a sleep apnea test. The results showed what I already knew. I did not have sleep apnea, but I was diagnosed with sleep maintenance disorder. This meant that even though I was sleeping, I was never entering the deep REM stage of sleep, causing me to never feel refreshed when I woke up.

I was willing to try anything to help me sleep. I started adding water exercises to my daily routine. I tried acupuncture, bought an ergonomic memory foam mattress and began practicing good sleep hygiene. Before this, I didn’t even know there was such a thing.

What is good sleep hygiene?

  • Maintain a regular sleep routine. Go to bed and awake at the same time every day.
  • Exercise regularly before 2:00 p.m.
  • Limit caffeine intake.
  • Do not read or watch TV in bed.
  • Bathe or mediate prior to bedtime.
  • Keep your room at a comfortable temperature.
  • Keep the room dark and/or wear a sleep mask.

Despite the fact that I was now able to sleep better, exhaustion became my new enemy. How can someone sleep 12 hours and still wake up exhausted? I was told that I was tired “because I slept too much.” It didn’t seem to matter whether I slept four hours or 12 hours, was active or resting all day or a combination of activities and resting. I was always tired and once 3 p.m. hit, my mind and body were done.

I was diagnosed with ME/CFS/SEID (myalgic encephalomyelitis/chronic fatigue syndrome/systematic exertion intolerance disease).

In addition to fatigue, one or more of the following symptoms are common:

  • Cognitive difficulties – poor concentration and short-term memory, reduced attention span, difficulty planning or organizing thoughts, difficulty finding the right words to say
  • Sleeping difficulties – early waking, insomnia, disrupted sleep/wake patterns
  • Pain – muscular and joint
  • Headaches
  • Dizziness, nausea and heart palpitations

It is hard for others to understand how horrible this disease is because we don’t look sick. A good way to describe ME/CFS/SEID is to imagine having body aches and exhaustion like the worst flu you have ever experienced – only it doesn’t get better. It is a debilitating condition that has a serious impact on a person’s quality of life. There are times when it has left me feeling alone and isolated. I have one friend where I live that hasn’t given up on me. Even though I have turned her down so many times, she still asks me to get together.

This year I cancelled my trip to my parents for Father’s Day. I knew that the long drive would be hard on my body. It would be too tiring and the following week would be difficult without the weekend to rest. Our spouses and children often resent us for not being able to do the things we could before, and they are often expected to do more. I have to plan to do things when I am least tired. I go grocery shopping in the morning when my family will be home to carry the bags up the stairs. It takes me all morning to shop, put away groceries and rest before I can do anything else.

Those who live with ME/CFS/SEID have to learn to accept the changes it will make to your life. I have accepted it but I don’t like it and it still bothers me. My house used to be clean and picked up. Now laundry will stay unfolded in baskets for days before it is put away, and dirty dishes will pile up in the sink waiting for the dishwasher to be unloaded.

This summer I was looking forward to my new job’s hours. I would be working four hours in the morning, giving me the opportunity to work in the flower beds and do my writing and house projects, all while enjoying the beautiful sun. I know this isn’t the rest my body needs, but I thought if I created a “daily routine” it would be perfect. My plan was that after working my four hours, I would go home and take a two hour nap, allowing me three hours of time to work on my to-do lists before making my family a “good” home cooked meal.

It has been three weeks now following my new schedule, and so far I have been unsuccessful in accomplishing my to-do’s. In addition, the changes have not made a difference. In fact, my tiredness has increased, as well as the pain in my sciatica, IT band and arthritis.

One suggestion was that I eliminate napping and to try working in 15 – 30 minute intervals, breaking up my afternoon into shorter work periods balanced with equal amount of rest time – remembering to pace my activities and not overdo it.

It felt like I was back when I was first diagnosed with Fibromyalgia. I feel that I am taking good care of myself. I use a mix of medical care, daily self-care and support. Included are prescription medications, vitamins, acupressure, chiropractor, light therapy, tens unit, ice packs, good sleep hygiene, warm Epsom salt/lavender baths and avoidance of sugar.

Now what?

I called my friend/mentor Celeste Cooper, telling her of my increasing non-restful sleep and fatigue. She said, “Whatever it is, this is not normal. It needs to be investigated. It is also possible it is not ME/CFS/SEID. Contact your doctor and discuss the severity of your symptoms. There are many possibilities such as Hashimotos, postural orthostatic tachycardia, neutrally meditated hypo-tension, Epstein-barre virus – or it could be something else completely or a combination of problems. The most important thing to remember is to not sweep all of your health problems under the fibromyalgia rug.” (For more information on fibromyalgia’s overlapping conditions, see Overlapping Conditions)

Gotta love the Fibro life! Just when you think you have it figured it out, it throws you a curve ball and you are back seeking answers.

“For there is nothing quite so terror-inducing as the loss of sleep. It creates phantoms and doubts, causes one to questions one’s own abilities and judgement, and, over time, dismantles, from within, the body.” – Charlie Huston, Sleepless

 

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Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 10,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in “Living Well with Fibromyalgia” and the NFMCPA “Advocate Voice.”

She is a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and is a member of the Leaders Against Pain Action Network.

You can find Melissa at:
Facebook: www.facebook.com/survivingfibro
Blog: www.fibrowarriorslivinglife.com
Twitter: MelissaSwanso22

 

A future advocate

Recently I was fortunate to meet two young ladies both diagnosed with Fibro at a very young age and both gave me hope for Fibromyalgia in the future.  At the young age of 16 they are both using their voices to “Make Fibromyalgia Visible”.

I met Kiley when her parents brought her to the kids football camp and Fibromyalgia fundraiser ran by NFL New England’s patriot Dominique Easley to meet Destinee (Dominique’s sister).  I listened as Kiley’s family talked to Destinee’s family.  The struggles they faced were the same struggles that my adult fibromite friends face.  They are living with the pain, fatigue and depression.

What makes them so different from many of us?

Instead of having co-workers or bosses not believing them it is their Teachers and their fellow classmates.  They are not worried about losing their job from missing work or not doing as good a job as they once did they are worried about missing school and keeping their grades up.

They were “lucky” to be diagnosed at a young age and not go most of their lives not knowing what is wrong with them or worse being told there is nothing wrong with them.  They have amazing parents who are supportive and trying to learn all they can to help their children but they also want to help raise awareness.

I am trying to learn as much as I can about Juvenile Primary Fibromyalgia Syndrome and feel it is important to hear the stories of those who have already been diagnosed.  In the short time that I have known Kiley and her family I feel that meeting them was one of the reasons that I had to go to Massachusetts.  Below is the interview questions that I asked Kiley and her mom(Mary).

 ~ MEET KILEY ~kiley

““I am still in pain every day, but I can live. I know how to deal with it now.”

Melissa: Can you remember how old you were when you began experiencing your first symptoms? And what they were?

Kiley: I was 14 years old when I started feeling symptoms of fibromyalgia. My first symptom was an aching pain that radiated from my left ear down my jaw. From there on it worsened to a stabbing and throbbing pain and then quickly spread to my whole body over the course of 3 months.

Melissa: How long were you ill before you were diagnosed with Fibro?  (How many Doctors?)

Kiley: I was ill for over eight months. I had seen over eight specialists before being diagnosed.

Melissa: Did your family and friends believe you and your pain that you were experiencing?

Kiley: My family for sure believed me. As for my friends, I received the feeling that they believed me at first, but then once the news of me being in pain got “old” they slowly stopped believing and caring.

Melissa: It is believed that someone can be genetically predisposed to fibromyalgia. Research shows that fibromyalgia is triggered usually by a physical trauma, surgery, infection or psychological stress.   In other cases symptoms gradually accumulate over time with no single triggering event. 

Do you know what triggered fibromyalgia in you?

Kiley: Through the process of being diagnosed with Fibromyalgia I was diagnosed with an auto-immune disease called Hashimoto’s Disease. It’s a thyroid disease where my immune system attacks my thyroid cell. I have hypo-thyroidism that goes along with Hashimoto’s and the two combined caused me to have Fibromyalgia along with Pain Amplification Syndrome.

Melissa: Have you been diagnosed with other conditions (evil sidekicks)?

Kiley: Besides having Hashimoto’s Disease I also have Pain Amplification Syndrome. Pain Amplification Syndrome changed the way my body reacts to pain. Any type of pain stimulation is amplified in my body. On the pain scale, for example, if someone gets a paper cut that would be a 1 or a 2 for them, but for me it’s more like a 5 or a 6. This amplifies my fibromyalgia flare ups significantly.

Melissa: What is your typical day?

Kiley: A typical day for me would be me going to school then coming home doing as much homework as possible then crashing.

Melissa: How would you describe a good day?   What do you love to do when you are feeling good?

Kiley: A good day is one where I can make it to school. I love school and I think having fibro and missing so much school makes me realize how much I love going. I love being there on a good day, and even on a bad day I try my best to make it, even for an hour.  If school is not in session then I like spending time with my family and friends. I also like drawing and writing.

Melissa: How would you describe a day when you are in a flare?

Kiley: Depending on how extreme the pain is dictates how I spend my day.  I have had flares so bad that clothes and blankets hurt. I can’t have people touch me. I have ended up in the ER many nights for these types of flares. I missed almost all of my Freshman and Sophomore year due to these days.

Melissa: What do you use when you are in a flare to help cope?

Kiley: Distraction is works really well for me. I usually get Netflix going and put on my favorite show, The Blacklist.  I have learned breathing exercises help along with forms of meditation too if the flare is not too bad.  I have learned exercise has helped to a degree. Some of my worst flares have led me to doing some form of exercise. As much as it hurts at first I feel a little better afterwards. I wasn’t always open to exercising during a flare but now I am more open-minded to it.

Melissa: What treatments have you tried in the past? 

Kiley: I have tried many medications and therapies

Melissa: Have any treatments been successful?

Kiley: Cognitive Behavioral Therapy was my best route. I learned a lot of tools from that but for the most part my psychologist helped me come to terms with my illness and getting that under control helped tremendously.

Melissa: What kind of Doctors are you currently seeing?

Kiley: I see an endocrinologist, rheumatologist, psychologist, and a chronic pain specialist at the moment.

Melissa: How has your relationship with your family & friends changed due to fibro?

Kiley: I have become closer with my family. If it wasn’t for them I wouldn’t have been able to get through any of this. As for my friends I find myself distant from a lot of them. I have two really good friends though, that have stuck with me through it all.

Melissa: How has it affected your school life? 

Kiley: School has been a challenge. Teachers don’t really understand it and some are not sympathetic. I have always been a good student and I never really had to work to get good grades, but with my illnesses I have had to work a lot harder than I use to.

Melissa: Have you met other young people diagnosed with Fibromyalgia?

Kiley: I have met a lot of young people. I have been a guest speaker at a few Chronic Pain support groups through Children’s Hospital and I met a lot of young people with ranging Chronic Pain conditions, a lot of them having fibromyalgia. I also had an article written about me in the newspaper last November and received a lot of feedback through that. Talking on social media about my illnesses and spreading awareness has helped me meet other people with this invisible illness.

Melissa: What do you want others to know about your illness?

Kiley: Just because you can’t see it doesn’t mean it’s not real. My illnesses are very real and they affect me and how I live my life greatly.

Melissa: What is one piece of advice you would give someone newly diagnosed?

 

 “Do not give up and you are not alone.” ~ Kiley

 

I asked Kiley’s mom (Mary) the following questions; Easleys-Reitanos-cap

Melissa: What was it like for Kiley and your family when she was first ill?

Mary: The unknown was scary and to watch your child suffering all day with no explanation is the worst feeling.

Melissa: How did you feel while she was sick & looking for a diagnosis? (Frustrated? Helpless?)

Mary: Angry, lost, frustrated, and impatient.

Melissa: A lot of us struggle with our family & friends believing us as we are searching for an answer to why we are feeling the way we do.  Did you believe her?

Mary: Yes. There wasn’t a doubt in my mind that there was something going on with Kiley.  At that time, we just did not know what, but I knew that there was something.

Melissa: How did it feel when she was finally diagnosed?

Mary: A sense of relief.

Melissa: How has Kiley changed since developing fibro?

Mary: She is more sympathetic to other people and she’s stronger than I could have ever imagined.

Melissa: How has your understanding of her illness changed over time?

Mary: Every day I learn something new and believe I will keep learning each and every day.

Melissa: Was there a particular turning point where you truly “got it” and understand how fibro affects her life?

Mary: The first time I heard someone else’s story and realized how similar it was to hers.

Melissa: How would you describe what it is like when she is in a Fibro Flare?

Mary: I feel helpless as a parent watching her suffer and to watch her struggle in pain and can’t get out of her own way is hard.

Melissa: Is there something that you or other family members do to help?

Mary: Try to listen the best we can and being involved with any type of support system that’s available.

“Try to listen the best we can and being involved with any type of support system that’s available.” ~ Mary (Kiley’s Mom)

 

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Kiley is not going to let Fibromyalgia stop her from making a difference in the world.  She has helped spread awareness by telling her story in a local newspaper.

She has agreed to join my facebook page; Fibro Warriors ~ Living Life as an editor. Kiley will be beginning her junior year and has began to think of her future.

“I would love to do something that has to do with Fibromyalgia or Chronic Pain in general.

I am very passionate about bringing awareness to this illness and there are so many people out there right now who are suffering from this.

I am not sure exactly what I want to do, but I know I want it to relate back to awareness.”

dragonfly 1
Fibro Warriors ~ Living Life

 

 

 

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