Chronic Fatigue Syndrome

Late Nights…

Most people do not know that I struggle with fibromyalgia. Chronic deliberating pain that often makes it impossible for me to complete simple things….like combing my hair and buttoning a shirt.

I received the diagnosis of Fibro and borderline Lupus in the military after being in for 16 years.  Just like many others, I thought my persistent pains and aches were just a part of the toll of running, numerous deployments and working in difficult enviroments. After 2 days of intense all over pain, my doctor informed me that my body was undergoing a major change. There was no cure and that my symptoms would get  worse as I got older.   I begin to realize that “late nights” would take on a different meaning for me.

My love/hate relationship  with my body began shortly after that. “I will fight this!” I vowed. I didn’t realize how hard the battle would be. After retirement, I continue to exercise and eat right. My body fought back…with a vengeance. Reminding me that no matter how hard I tried, It would always be ahead of me in the race. Always one lap ahead of me…the only thing I could do is try to catch up.  To keep running!

My laps are never easy. My body gives me signs and symptoms when a pain flare is about to occur. My body warns me of impeding rain, I plan accordingly. It tells me when I have been on the go too many days in a row, I take a day of rest.  It warns me when I am stressed, I plan a solace …

I bargain with my body daily. Some days I win, and some days I lose….never graciously. My defeats  come with intense stiffness, excruciating pain, sleepless nights, light sensitivity, pain and memory issues  Some flares last for a couple of hours to several days. My pain is worse at night, when I am alone and the world is fast asleep.  Late nights curled up in a ball under a heated blanket filled with insomnia and pain. Some nights  I have often sat outside watching the stars….praying….waiting on the sun.

When I wake up, I feel like a new person….literally I am.

My ability to push through my pain daily keeps others wondering.  I look great on the outside, but  Im constantly trying to keep up. My high pain tolerance level allows me to operate normally on a pain level that many would have to seek medical attention for.

My trips to the ER  come every 4 to 6 months. The nights when I can no longer find a home remedy to bring my pain level down. Over the counter meds, epson salt baths, yoga , exercise and meditation lose their strength.  I become immune to regular pain relievers . Even prescribed narcotics cease to dull my pain.  I sit for endless hours in an ER to receive a shot that lulls me into a peaceful state.

It is during this time, I often mentally battle with my ability to continue on this journey. It is during this time I understand how many people with chronic pain have opted for the presumed “easier way out.”

I’m grateful my spirituality  prevails and the morning brings a joy!  I count my blessings after late nights and I am truly thankful….thankful that Im not confined to a bed or a wheelchair. Thankful that I know that each  flare will pass….eventually.

Thankful to see the sun peek through, reminding me that I  made it through to another beautiful day.  Thankful that through it all, I’m still running…

If you are struggling with any pain, whether physical or mental.I pray  you find the strength to wait on the sunrise.

Peace, Love & Empowerment

Vo-GIRL-CRYING-facebook

Take care of yourself….. and Life will follow

Originally posted on 05/24/2013

Today, is the Friday before Memorial Day weekend. My entire Family had made their plans and I thought what a great chance to go to visit my Grandma.

When I “go home” for visits I always feel so rushed and torn that I am never spending enough time with any of them. I have my Parents, my sister, my Grandma, a Great Aunt, and friends that I want to visit. Seeing as how our visits are usually from a Friday to Sunday. It makes it impossible to see everyone that I want to see.

I thought this would be a great time. I was even thinking that I have made Fibro friends that live in towns that I pass on my way down that I could ask if anyone wanted to go for a cappuccino/coffee, meet in person. I would be able to get a good stretch in and then head on my way.

I would visit for 3 days and be able to spend plenty of time with my Grandma, her Sister, a few friends, and still have time to sit down, write or even maybe relax. (I may have to be reminded what “relax” means again).van mom

I have been looking forward to this trip for a long time.

I hit a flare on Monday and have not been able to get rid of it. Today it decided to add a headache leading to a migraine.

I have worked every day this week (10 hours on Wed). I am taking Vicodin every 4 hours which basically takes my pain from a 10 to a 5. I have been waking up every 3 hours needing to adjust, apply ice or heat, and take another pain-killer.

I seldom stay down even with a flare. I push through them.

However, the trip is 4 1/2 hours without stops. I would need to stop a lot. In addition, my body needs these pain pills right now. I only use them when I am in a bad flare. I do not take them when I am going to drive. I take them after I arrive at my destination. I know that being in a flare can cause enough “fog” or unclear thinking leading to reaction times not being “normal”.

It was such a hard decision. I decided to stay home and to what will be a surprise to many of the readers ~ I have not yet gone to work.

I posted this on my Fibro page this week;

This is the perfecthealthy post for me right now. I am supposed to go to Illinois by myself this Friday to spend the weekend with my Grandma. I am in such a flare, pain is highest ever. I know I should stay home even tho it means missing my Grandma and that my husband and Daughter will be off on their own weekend plans. The guilt is worse than the pain sometimes. I don’t miss things, I even worked ten hours thru pain and tears because I knew my Mgr needed my help. We do need to take care of ourselves. Not always an easy choice but the right one.
Many of my FB friends posted two scenarios. They either make themselves do everything no matter how much pain and suffering they are going through at the time or they miss out on all of the family/friend events that they want so desperately to attend.

I know that I am the first example and am scared to death of becoming the second. I personally find nothing wrong with either of the choices.

I think that like everything in life I need to find a way to balance both choices.

I realize that if I don’t take care of myself and keep going I end up worse and then I am no good to anyone especially myself.

 

I continue to do everything that I can everyday to be a

Fibro Warrior ~ Living Life!

warrior

 

Hello Doctor: A Better Way To Access Your Medical Records!

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By now, everyone here who reads our blog knows that we love to feature our favorite websites and apps that would be helpful to our readers. There are some pretty powerful tools out there to help us on our path to wellness, I’ll be the first to admit that. But there is one thing that I have seen a great lack of: services to let us access our medical records. I mean, yes, we can of course carry around a folder or a binder with our records in them, but that can get to be rather tiresome at some point. Wouldn’t it be pretty awesome if we could keep our medical records on our phone and be able to access them at the simple touch of a button? Sounds good, eh? It’s finally possible to do just that! Hello Doctor™ makes it insanely easy to keep track of your records, right in the palm of your hand. Born out of the need for a better way to keep track of everything from test results, doctors you’ve seen, hospital visits, bloodwork and more, it is set to be a game-changer in the healthcare industry.

Hello, Doctor!

This story begins with a woman named Maayan Cohen. Her boyfriend at the time was plagued by violent headaches, which usually bothered him during the evening hours, until one morning he had woken up with a terrible headache. Maayan decided it was time to take him to be evaluated by the emergency room. Coming as a shock to all, he was diagnosed with a brain tumor, and would need immediate surgery. Thus began a battle against his cancer for the next two years. As the journey progressed, Maayan realized that
many of the doctors that her boyfriend saw would only give them both about ten minutes to talk about his condition, their concerns, and of course, trying to locate any of the recent test results from her boyfriend’s medical records, which she toted around in a huge binder. Realizing that sifting through this binder wasted more time than anything, she set out to find a better way for patients to access their medical records, and even keep them in their pocket, 24/7.

Maayan Cohen, HelloDoctor's CEO

Maayan Cohen, HelloDoctor’s CEO

The Happy Ending(s)

Maayan’s story has not one, but two happy endings. The first is that her boyfriend pulled through and beat his cancer, and is in permanent remission. The two still remain great friends and talk often. The second happy ending is Hello Doctor. The frustration that she experienced during her boyfriend’s brush with cancer had inspired her to quit her job and develop the Hello Doctor application, which is set to help millions of people all across the globe have instant access to their medical records at the touch of a button, with bank-level security, so your records are totally safe. Today, their team currently consists of six people, all who have had similar personal experiences with illness and the inefficiency of today’s medical record systems.

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Organize your medical records in SmartLists, by record type! Access your records in two quick taps!

Would Hello Doctor Help Me?

Personally, I think this application is amazing. As a Fibromyalgia patient who experiences terrible brain fog and cognitive impairment most of the time, I’m lucky if I can remember to grab my purse before I run out the door, let alone make sure I have all the proper medical documents and test results with me before I go to a doctors appointment. I’m also loving the clean and streamlined design of the application itself, no muss, no fuss and easy navigation so you won’t get confused using the application. You are even able to share all of your medical records with physicians e-mailing, faxing, or posting.

Hello Doctor is proving to be an extremely valuable tool to patients everywhere. There has even been quite a buzz in the media about it, with the likes of ABC News, Fast Company, The Mayo Clinic’s Cancer Blog, Forbes and TechCrunch all reporting on this new and vitally needed healthcare tool. It even won the prestigious 2013 DEMO award in Silicon Valley.

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I think that it’s high time that we spend a lot more of our time taking care of ourselves, nourishing our bodies and feeding our spirits, and less time on the never-ending drab and dull paperwork.

I think it’s time for Hello Doctor™.

 

Click Here To Download The Hello Doctor App!

FighterzNet: Week of 3/18

It’s that time of the week again, Fibro Fighterz! I’m sorry I am a few days off, it’s just been a crazy mess of things at home! You know how that is. Especially with Fibromyalgia, things can get tough. Spring is on it’s way here in New Jersey, I think we have finally seen the last of the snow – I hope I didn’t jinx it by saying that! But, I digress. I’ve found a whole bunch of new websites this week for this edition of FighterzNet, I think you will be very pleased! So take a peek at them and see what you think!

Health Month
health

We all want to lead healthier lives. That’s just part of human nature. But often times, especially when one is befallen with a chronic illness, it can be rather tough to get ourselves motivated. Even the mentality for change isn’t there. I don’t know about you, but even when I am feeling my worst, I am always up for a good game or two. HealthMonth has taken that idea and turned it into an incredible motivation tool! Their website is centered around a wheel, which you can take for a spin! Think of it as a wheel of fortune of sorts, just for keeping yourself in check! There are many different challenges for the month and there is also a fun community you can join as well for others to help you along in your quest for good health! You can set your own rules, too.

Click Here To Visit Health Month!

Second.MD
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If you’ve ever wondered about getting a second opinion when you weren’t satisfied with the answers that your primary care provider gave you, there is a website out there that is the perfect solution for that. As Fibromyalgia patients, it can be tough to essentially hop from doctor to doctor, it is physically taxing on our bodies. Second.MD is the online solution to that problem! With their website you can access top healthcare providers that you can ask any health questions that you want, right from the comfort of your own home.


Click Here To Visit Second.MD

Med ID’s

EMI
Even for someone who isn’t living with a chronic illness, it is extremely important to have a medical ID card with you at all times, should a medical emergency arise and you are unable to communicate. It’s imperative to have your medical information on you, but you don’t have to pay for fancy ID cards to do so.  With Med ID’s, you can enter your information and print up a medical ID card from the comfort of your own home. Their website also offers an array of different products that will alert medical professionals that you keep a medical ID card in your wallet. Check out their website and get yourself one!

Click Here To Visit Med ID’s!

PillPack
pack

If there is one thing that I can completely forgetful on, it is my daily medications. Whether or not it is the ever elusive “Fibro Fog,” remains to be seen. But I have tried nearly everything to make sure that I take all of my medicines on time. You know how that can be, sometimes the refills come up at different times in the month, it gets confusing, and we end up forgetting, and ultimately missing some of our medications that are most important in helping us on our path to wellness. Enter the PillPack. I’m kind of really excited about this, it’s a packet put together with all of your current medications! In addition to that, it also lists what time of day you are supposed to take them, exactly what is in the packet, including medication names and dosages, the day of the week and the date. Seriously neat. Personally, I am going to definitely look into this for myself. I’m never going to have to buy another pillbox again, nor will I have to remember refills, either! Huzzah! 

Click Here To Visit Pill Pack

The Pillow Fort Magazine

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I will admit that it is not often that there is a magazine that I am interested in reading. But this past week, there is one that caught my attention and aptly held it. Do you remember the pillow forts that we used to build as kids? They were our safe havens, our headquarters, a place we could go to escape. Well, guess what?! The Pillow Fort Magazine has created an incredible magazine for those living with chronic illnesses. Even their slogan is amazing, “Making Chronic Illness Suck Less!” With amazing resources, personal stories, how-tos, lists, and more, you are not going to be disappointed with this magazine!

Click Here To Purchase The Pillow Fort Magazine!

TFFBA: Julie Ryan of Counting My Spoons!

 It’s that time again, folks! We have been scouring the net for those amazing bloggers that go the extra step, enlightening their readers, employing humor to add levity to their life, sharing information and tips, and more! We’ve awarded the Fibro Fighterz Fierce & Fabulous Blogger Award to another recipient! You can find out more about our latest winner below!

Julie Ryan

Counting My Spoons

Julie
About Julie:

“I was diagnosed with Fibromyalgia in 2010 and have been blogging about this lovely ride ever since, sharing my journey, what I learn, and the stories of others along the way. After a couple of extremely bad years I was able to find some relief for my Fibro symptoms through a massive diet change, giving up gluten, grains, eggs, dairy, and yeast. I also drink a lot of fresh green juice. It’s not a cure but it’s the best treatment I’ve found.”

Through blogging, Julie has been able to reach many readers and helped them learn more about Fibromyalgia and chronic pain through her informative and inspirational posts. Through her blog, Counting My Spoons, she also shares her favorite Fibromyalgia, chronic pain and chronic illness blogs via her featured Fibro Warrior Wednesday, where she interviews a different Fibromyalgia/Chronic pain advocate each week. Julie is also a contributor on the subject of fatigue at Answers.com

Learn More About Julie Here!
Visit Counting My Spoons Here!
“Like” The Counting My Spoons Facebook Page Here! 
Tweet With Julie Here!
Add Julie To Your G + Circle Here!
Check Out Julie’s Answer.com Articles Here!

Whether or not it’s the weather?

Originally Posted on April 14, 2012 by swansonmjs

Does the Weather Affect Fibromyalgia Symptoms?      HECK YA!

How can people not see how it affects everyone not just the Fibromites?

Every article you read – gives totally different replies.  Does the weather affect moods? Health? Pain? Of course they do.

There are so many studies that prove that temperature, barometric pressure, humidity, precipitation and wind affect Fibromyalgia symptoms. Studies do show that Fibromites tend to have more symptoms flare during December and January due to cold temperature & low barometric pressure.

Barometric Pressure: Sunny days create a high barometric pressure while storms result in a sudden drop. These changes can trigger muscle aches in FM patients.

Humidity: Humidity is associated with headaches, stiffness and widespread pain flare-ups in FM patients.

Precipitation: associated with a change in barometric pressure. This can result in increased pain and fatigue in FM patients

Temperature: especially rapid changes in temperature and cold tend to irritate while warm temperatures are less troublesome.

Wind: In general, wind usually causes a decrease in barometric pressure regardless of its force and therefore can trigger fatigue, headache, and muscle pain in FM patients.

One of my diagnosis is Seasonal Affective Disorder.

It is directly related or even caused by too little sunlight, which causes the body’s time clock to go out of sync, upsetting the body’s routine, and may even affect certain hormonal levels.

The symptoms of SAD are depression, sadness, lethargy, fatigue, excessive sleeping, difficulty getting up in the morning, loss of appetite or increased eating of carbohydrates, thus increase in weight, decreased activity and socialization, apathy, irritability.

Your body operates using an internal clock known as the circadian rhythm. Changes in seasons and the amount of light that your body receives can throw off your circadian rhythm, causing you to feel fatigued and more achy then usual.

I read this in one study – But I am not going to pretend to understand it.  If you do – please comment on it for me.  The study said “There does appear to be a relationship between low temperature levels and an increase in the number of pro-inflammatory cytokines in the body. These cytokines appear to be related to pain intensity.”

So what can we do to combat the effects of weather?

We know that sleep cycles change during times of extreme temperature – either too hot or too cold.  I know that we need longer deep and restful sleep.

I go to bed same time every night.  I added a heated mattress pad, lavender spray for pillows, a body pillow and ice too.

Cold temperatures are usually worse so they say to dress in layers on the chilly days.

Ok – sure and what do you do when you have allydonia along with it. Dress warm when you need to wear tank tops.

Try to increase the amount of light you have inside of your house. Purchase halogen bulbs or a special light box to help improve your mood.

Ok – here we go again~How do we do this when not only the sun streaming through the windows are too much to handle & we start wearing sunglasses indoors.

I do have the special light bulbs next to my chair in the living room (thanks to my Mom) and a light box on my desk at work.

What do we know about the weather and Fibromyalgia?

Cold temperatures and low barometric pressures are not our friend!!!!

Find what makes you feel better – whether it’s like me and go for a swim.  I will go lay in the tanning bed for a quick warm up. (No lectures on Cancer – I’m killing myself slowly with all these pills – at least let me be warm and relaxed).   I really haven’t learned how to make my own sunshine. But I am trying. I usually will open the blinds (and wear shades in my house), light candles, put out some fresh flowers, open up the windows and let in some fresh air.

Wishing you a sun-filled day!!!   (and it’s hip to wear shades)

I am a Fibro Warrior ~ Living Life!

warrior

Alone in a Crowd

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Originally posted; Mar62013
  *Although I  posted this so many months ago – after re-reading it ~ it is exactly how I feel today

Alone in a Crowd

Part I

I am in day 3 of a Flare.  It started on Sunday afternoon with my sciatic shooting pain down my right leg followed by my leg deciding to run a mile without me.  I was able to alternate walking and sitting, applied heat and some meds to get through Sunday.

On Monday, when everyone was watching the weather trying to determine whether it was going to hit us or not – I would simply reply – “We are getting some kind of strong weather – trust me”.  My body was already forecasting the weather to come.  The body aches were increasing.  I could feel the myofascial trigger points increasing in both my low back and between my shoulder blades.  I forced myself to go to the pool before work which did help immensely in being able to walk easier.   Note:  I still don’t need a cane or other walking assistance – I just walk like I am 100 years old when I have these days.  I worked a full day with an even fuller night being Mom chauffeur.

On Tuesday a.m. I awoke to the phone ringing telling us there would be no school due to the snow we had received over night.   I would have been calling in sick which I rarely do but the fact that my driveway and roads were not plowed gave me one more reason to stay home.

My body was rebelling the snow outside.  I kept the blinds pulled all day and yet still had a migraine and was wearing dark shades.  I took a long hot bath followed by ice on the back a warm blanket some meds and a NAP.    I woke with hoping to feel better.  There was a short time during the day when pain was lessened.  Then when fixing my family dinner – my body reminded me that it was still there.

It’s Wednesday now,  I woke with the same morning stiffness and aches that I always endure.  But as I continued to get ready for work the pain continued to increase.  Grateful to have only a headache and not a migraine with the rest of my body in high pain, jeans killing me as they touch my thighs.

I dropped our Daughter off at school and then the tears started to come.  I have a 25 minute drive to work which I never stopped crying.  I talked to my husband briefly; when hanging up he said I hope you feel better soon.  He was trying to say something to help but when you have a hysterical pain filled crying woman on the phone what can you say?

Part II – So Alone

As I was driving to work I thought who can I call.  I needed to talk to someone.  I love my Family and Friends but as I thought of each of them I knew they were not what I needed.  What could they do?  I know my Mom would have succeeded in calming me down but all it would have done was to stop the crying.  I needed more than that.  The same thing goes with my friends – I would have most likely calmed myself down until I hung up.

What did I need?  I needed a Fibromite friend.  I needed someone who would 100% know how I was feeling.  We say all the time that unless you have really experienced a Fibro Flare you can’t get it.  How can we make others really understand without going through it.

I think I will print out the following recipe to share with non-fibromites.

recipe cardRecipe for a Fibro Flare

  • Stay up for 3 or 4 days to get the proper feeling of exhaustion
  • Dress in clothing made of rough burlap material
  • Get the flu bug to add fever & body aches
  • Go out and drink way too much – this should give you the migraine, poor balance and queasy stomach
  • Ask someone to take a bat and beat you from head to toe
  • Spend too much time in the sun – giving you the worst sunburn you have ever experienced
  • Use your arms as a pin cushion
  • Add a good dose of memory loss
  • Top it off with someone stabbing you between the shoulder blades once in a while with a good sharp knife
  • Turn on bright spotlights and loud music several times throughout the day
  • Repeat all of the above for at least 3 days

I don’t know if this will help but it’s worth a try.

I continued thinking – how alone this pain makes us feel.

I keep think is that I have family, friends, online support groups and my page where I work so hard to keep a positive outlook for others and yet why do I feel like I am all alone?

How many of us have only have an online support group that we can post our bad days and get some sympathy; and maybe some advice, and really have no-one we can call.

So many times when on some of these sites what happens is we get others who chime in on how bad their day has been too.

Don’t get me wrong I find a big need for these support groups. Heck, I even have my own small one.  I believe in them.  There should be a place where you feel safe to express the pain, anger, etc and hopefully get some positive uplifting support with maybe a few new things to try.

I have a handful of people I have met on these support groups that have become what I would call my Friends.  These are people who I hope in my lifetime to meet and wish we lived in driving distance of each other.  However except for one I have never had any contact with any of these people except for online.

I began to wonder – is there a Hotline for Fibromites?  If not, how hard would it be to start one.  What if I started one? A way for others to have someone to text or call when they are in real need of someone who ”has been there” and really can understand where we are coming from when we are in day 3 of a flare.

We use the closed online groups to keep our anonymity; what happens when we open up to others via text, online chat or a real phone conversation?

How can we be surrounded by so many people who care and love us and yet we still feel like we are all alone?sometime we all need a shoulder to cry on

I know that personally when I hit a flare I may start out by voicing it but the longer and stronger they become the more withdrawn I become.

I just want to lock myself up in my room and just be left alone.

This is exactly what I tell people not to do.  I know what I need to do.  I need to make myself go to the pool tomorrow, have my hot baths, keep moving as much as I can.

Tonight; I am going to lie low.  Tomorrow, I will find my inner fight and beat this thing.

I will put this out there to any Fibromites who are reading this – until I figure out the solution to the Fibro hotline – if you are feeling in pain and alone know that I have an ear, a shoulder and sometimes some ideas to share.

We are all Fibro Warriors ~ Living Life!

warrior