Back to Basics

What is Fibromyalgia Syndrome?

That’s a loaded question! Each person experiences fibromyalgia differently… but, going back to basics, I will try my best to explain.

The nervous system of someone with ‘fibro’ looks like this;

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So, a person with fibro has an overactive nervous system.

You can read more about the nervous system: here.

Signals are being constantly sent to the brain that the body is in pain, the brain answers and we end up with this;

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Further reading about the effects on the brain: here.

So, the brain is very busy for a person with chronic pain from Fibromyalgia Syndrome. Then we add the cognitive dysfunction, known as fibro fog, that we deal with as fibro warriors.

This is a good description;

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(Image courtesy of Pixie.)

Further reading about fibro fog: here, and here.

So, the very basic explanation of Fibromyalgia Syndrome is this;

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(Image courtesy of Pixie.)

In-depth symptoms of fibro and accompanying conditions: here and here.

To sum up this post, it is OK to not fully understand fibro but NOT OK to think it is easily defined. Fibromyalgia is not a cookie-cutter illness. This is a real ‘syndrome’ (which means made up of many co-existing conditions) that is debilitating and extremely painful.

img_0456~Kim

If You Grow

I can’t remember exactly when it was…

One of my sisters was getting ready for her third or was it the fourth parade that summer as Queen of such and such. (It seemed as one or the other was always crowned ‘something!’) The other was helping her primp. I was just sitting at the table watching all the frenzied crowns, gowns, and sash adjustments. My mother turned to me and said, “Well, you didn’t get the looks, but you got the brains.”

I didn’t realize at the time that those words were a gift. Those words meant I could do anything! Be anything! I just couldn’t be ‘pretty.’ To a teenage girl, I admit those words stung at the time.

I have two sisters and three brothers. I guess they are all brilliant in their own way. I must have some sort of brilliance within me by default? I mean, I came from the same genetic pool they did.

So I grew into adulthood and knew I had to use my brains to get somewhere in this world! Obviously, I couldn’t rely on my looks or lack thereof. My mom burst that bubble while I was still young enough to do something about it. Funny how I now look back at that as a defining moment. I appreciate those words now.

So I learned to hustle! I learned how to learn. I was hungry for success and never stopped until I met my goal. I wrote many posts about my life before I became chronically ill. Most of you might remember reading the “Before I Tripped Over a Stone” series. Life was never dull for me.

When you are raised to be a ‘do’er’ and that gets taken away from you, your identity suffers in crisis. Who are you if you can’t do what you know how to do? What good are you to anyone? Do you have any worth now that you are broken? Devastation sets in…

We can approach this devastation in one of two ways. The first way is to fight back with everything you have inside you. The second way is just giving up. How does that look? How will you feel about yourself if you just give up? Certainly nothing ‘pretty’ about that! Let’s not give up. We will fight!

There is one crucial thing you must do while you are engaged in battle. Many of us have not or could not stop long enough to say goodbye to our previous selves. We are so busy fighting! We simply forgot to say goodbye and grieve for the part of our selves we lost to our illness. We need to say goodbye to the person we were, grieve that person for as long as it takes, then welcome the person that we are now, even in our broken state.

Why?

Anything can change the periphery of our lives in an instant! In one hot second, you can go from life to death, healthiness to illness, rich to poor. In a moment, life can change. In a moment, life usually does change.

Who is this new person staring at you every morning in the mirror? Are they kind? Are they a warrior? Are you caring for this new you? Are you kind to your new self? Do you realize you get to live two lifetimes in this one life…?

Have you grieved?

 

img_0456~Kim

This is Fibromyalgia on the Road

We have been on the road for two solid months. (The Stone Begins to Roll.) I can tell you now how this lifestyle is working for my health. Physically and Mentally.

First, I want to be straight up with you. RVing was an option the hubby and I found very appealing for us. The actual cost of living for full-time RVers is much less than living in a ‘sticks and bricks’ home. I think the ability to downsize dramatically was easier for us then it would be for a couple with children. We had less emotional attachment to our stuff. Finally, Jeff was willing and able to make a career change. Basically learning new skills to become a day trader that would allow us to become mobile. We can now live anywhere.

During the beginning of 2019, when we decided to get serious about selling our house, we began to do in-depth research about everything there was to learn about the RV lifestyle. I can not stress enough the importance of research! The information on the internet is vast. YouTube videos became our nightly news. We hit every RV Trade Show we could. Camping World became a second home. There is so much to learn, and it can be just that, learned! Heck, if we can learn it, you can too! No one is going to hold your hand, but it seemed everyone who currently RV’s is more than willing to help!

When we finally put our house on the market on August 1st, 2019, we knew we would not be able to make our September mortgage payment. I had a serious heart to heart with our realtor. He knew what the stakes were.

We used to be your average everyday middle-class couple. A few month’s savings in the bank. A two-car garage with his and her cars to fill it. We bought a city duplex, always adding an additional income to our plight. Then it all changed. President Obama started implementing his policies, and our life was simply turned upside down. Yes, the poor were cared for and insured and the middle class, most of it anyway simply disintegrated.

Our insurance rates tripled. Jeff was phased out of his high paying job, as were many because of the cost of healthcare per employee. Jeff took a much lower-paying job that was actually one of the highest paying jobs left in his field. Having a chronic illness is very expensive. I went through numerous hospitalizations and surgeries. My insurance company crumbled and closed. I had excellent insurance, then I didn’t. We paid three times more for health insurance and received less coverage. Medication costs skyrocketed under the new government. We somehow made too much money to qualify for medical or financial assistance through Obamacare. We just weren’t poor enough, yet. We quickly found ourselves not quite making it from check to check. We began the downhill spiral into credit card debt…

We sold our house in five days and closed in thirty. (This just does not happen!) We were extremely lucky.

Currently, it turns out my daily pain has decreased substantially. When we began RVing, I could barely do stairs. My pain was absolutely debilitating. I could not cook, I couldn’t stand that long as my back pain was severe. I could not physically do much of anything. Now the stairs are an afterthought. Cooking is convenient, even more so now that my hubby has time to grill! Cleaning the entire RV takes less than 20 minutes. I honestly can say I enjoy living in a space I can care for.

Mentally, in the beginning, it was surprisingly difficult to deal with. I felt a bit like an orphan with no place to call home. It’s a strange feeling. A bit unnerving. Luckily those feelings pass quickly! I am genuinely in the best headspace I’ve been in for years. I think the hubby would agree, and I believe he would report his own improvements as well!

We are now confident we will bounce back financially. We now live without fear of the next mortgage payment. We still have bills, but they are manageable! Physically I continue to improve. Yes, I still have bad days. Evenings remain very difficult for me. Going the entire day with almost no pain has been a gift! I am cautiously excited!

I know this isn’t everyone’s bag of chips for many reasons. That is OK. Control your surroundings and make your living area into space you can manage and enjoy.  What does that look like for you? That is the right way! Be kind to yourself, don’t beat yourself up. Life is hard enough. You are so much more important than stuff. Always.

Live your best life!

img_7612-2~Kim

The Stone Begins to Roll!

Yep, we did it. We purchased our ‘rig.’ A  2020 Keystone Impact 359, 5th wheel, toy hauler. Say that five times fast! Here is the kicker; we still haven’t seen it in real life. There is no need to go to an RV dealer’s lot to purchase an RV these days if they are honest (do your homework!). You already know what you want anyway. There is now no-haggle pricing (yes I still haggled a bit, anyway) no discovering a new layout (we’ve walked through them all, this was our homework!) no new paint job unless specified that it has one. There is just not a lot of mystery!

You should go to many RV shows. You should visit many dealers, private sellers, and every seller on the web through RV Trader and RVT.com. This is a journey, not a destination. Well, it’s kind of a destination because you end up with an RV or you may not… may not would be bad at this point. YouTube videos and RV blogs are to be followed and watched with vigor (like the rabid dogs we are). You are consistently hungry for knowledge, and you must gain it before taking on this life-altering decision to full-time RV. We did it all!

So without further ado, here is our brand new home!

Isn’t she a beauty! What to name her? I just don’t know yet. All I know is that this is my ticket to living the fullest life I possibly can! No longer will I be homebound, teetering on visiting the ‘shut-in’ status. No more winters of being too afraid to venture outside in case I fall on the ice, then freeze to death.  I am so happy to be looking at a mobile life chasing the sun. I know my symptoms are increasing. Some of my conditions are getting worse… so I will travel now before that option is taken from me. I feel very blessed to have reached this destination. I am so lucky to be able to try to live this lifestyle. I want to take you all with me! Believe me, I will try.

This Fibro Warrior is finding freedom as a rolling stone!

img_1722~Kim

What Flare?

You have probably read that I’ve been in flare mode for almost a month. We sold our home, we close on the fifth of September, very soon. I’m pleased that the house sold at asking price. Of course, a bidding war would have been fun, or not.

The last night in the house on Taylor Street, I sent out an SOS text to my brother-in-law that I needed help. He came, packed MOST of my living room and office. He loaded it all into his truck. Then went and got his other truck and loaded that too, along with various boxes I’d packed. He called his wife, and she arrived shortly after to pack up my entire kitchen. Nice, right? I cannot remember any of it! Not one detail. I was in a full-on flare mode with fibro fog! Needless to say, every box I open is like Christmas morning. I can’t believe all the work they did for me. I have thanked them profusely, but how does one know if that’s ever enough?

The change that comes with living out of boxes in a semi-permanent living environment is unsettling. My husband and I have taken up residency at our family’s lake home. Well, I’m a part-owner with my remaining five siblings, so it is part mine. I mean, it sounds weird to say ‘my’ lake home, but I do pay taxes on this property. So, yes, my lake home.

My brother, Kory, was in the military. When he was 37, he was diagnosed with a very aggressive form of cancer. He lived for just seven weeks after that diagnosis. He was able to instruct us on what to do with his life insurance. He was still single, but family meant everything to him. This lake home stands on the land where my father’s boyhood home stood. This property has been turned into an LLC and will remain in our family for generations to come. It truly is a gift. I would’ve chosen my brother over this vast, six-bedroom lake home in a heartbeat, but that wasn’t to be. (Rest in peace Kory.)

I am rambling, aren’t I? Yes, I am.

The point of this post was to tell you that last night I was in some sort of cognitive blackout caused by an extremely stressful and painful day. My fibro fog has been happening very frequently. This also causes, S-T-R-E-S-S! I wrote a post at one point about a theory I had about fibro fog. Our brain allows us to escape from our painful reality by resorting to a dysfunctional cognitive state. It basically shuts us down to ‘reboot.’ It still is only my theory, but, I believe this is what happened last night. My husband said I was very cooperative, I listened to him, and he guided me into bed so I wouldn’t hurt myself. (I swear if he roofied me again… just kidding!)

I feel very different today. Still some intense pain off and on but overall, I am better physically and much more so mentally. I will begin updating you on our new beginning next week… I am officially going to start documenting the process of our continued search and purchase of our 5th Wheel and truck. We are narrowing down the options so I better start telling you about it all.

I have a new tagline. After much thought, a decision has been made!

drumroll…

I Tripped Over a Stone.

“A Fibro Warrior finding freedom as a rolling stone.”

What do you think?

Live your best life!

 

img_0986~Kim

I Am Homeless

It feels surreal. No, actually it feels scary… unorganized, tumultuous, messy… and a bit sad. The house on Taylor Street now stands alone. Vacant. Waiting for a new life to fill her walls. I only want the best for her. She saw me through many years of health, happiness, illness, sadness… but I could no longer care for her. Fibromyalgia made sure of that. On the 5th of September, we will hand over the keys to her new owner.

I don’t know much about him, the future owner. I don’t believe we are really supposed to ever meet. The little bit of information I have found out is that he is from Japan. He is an expert at purchasing and refurbishing duplexes. This is what he DOES. The house on Taylor Street will be in good hands, I think. I hope.

Fibromyalgia takes and takes. The more you fight your symptoms, the more your symptoms fight back! I was not able to move from my home with a planned pace of moving in an organized fashion … fibromyalgia made sure of that. It was a frantic and chaotic exercise, just trying to get everything boxed and thrown into a pick-up bed.

IT. WAS. NOT. PRETTY.

I arrived at my family lake home with very little memory of the actual event. The following days my families annual reunion was taking place as scheduled. I was in attendance. (I know this because I am in the family picture!) Honestly, I do not have much recollection of the weekend event. The following week I know I made some meals, went on a few boat rides, and drove my mom to a few medical appointments. I made a nurse cry (long story). I made the ritualistic runs to WalMart, I have the storage bins to prove it. During this time, my husband was driving from the lake house to the city house to empty the last remaining boxes of tools and ‘man’ stuff.

Then, three days ago I went to bed and I just never got up.

Three days felt like an hour… I did emerge from my room once. My sister simply looked at me and said, “you’ve lost two days.” I nodded and returned to my room, ‘losing’ another day. My sister knows about the loss of time as she suffers from debilitating migraines. Infrequently but never the less horrific to observe. (I can’t fathom that kind of excruciating head pain!)

Now what lies ahead of me is a smaller home. An RV until we decide where to put down roots again. A pickup truck. Only the worldly possessions that we can carry with us. Fibromyalgia can’t take that away… but it will try.

It is so good to be back blogging! I have missed our tribe terribly!

 

 

 

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Grace Kelly and Me

Grace Kelly. Never have I seen a woman who so personified her name. Grace Kelly was indeed a woman of grace. I wonder if Grace Kelly and I would have gotten along? Would she have liked me? I want to be a woman of grace. I do not want to be Grace Kelly-like, I want to be me but be a person who is associated with grace. I want to be that person who personifies grace. To me, this is a courteous person, has a manner of behaving that is attractive, and promotes goodwill. Grace.

I learned some precious lessons when I recently suffered a blow to my self-esteem. Just when I was so very sure of myself, feeling understood and respected, a few comments in passing shook me to my core. I had no idea why I felt so destroyed by these comments? Although these comments were directed at me, they were really not about me. But I was nowhere near reason when I first received these comments. My first reaction was anger, and boy did I react! Then, I just felt hurt, and that turned into fear. Fear that I was somehow a complete, incompetent failure.

I really believe you must be true to yourself! You are the only one you have to live with, day by day, minute by minute. If you are angry, hurting, and/or fearful all the time, what are you like to live with? Does your partner want to come home after work? Do they avoid you when you are home? Do you avoid them? What would it be like to walk into your house and see yourself waiting for you… would you be excited to spend time with your own self?

I learned two compelling lessons from my brush with low self-esteem. The first is, to thine own self be true. If you know there was no malice meant by your words or deeds, then you are not to blame. But if you feel a responsibility to explain or apologize for a misunderstanding, do it. Secondly, handle yourself with grace at all times. Be the person who is thoughtful and promotes goodwill. Be the person your partner, spouse, children, want to come home to, and your friends want to visit.

Self-esteem is a tricky little monster, but it is your little monster.  I am a person that tends to have low self-esteem, I also am a person with fibromyalgia, but I am doing my best to manage both. Life shut down my freeway, so I had to take a detour. Life is a constant construction zone, so you find the detour and get through it. Hopefully, with grace.

And yes, I do think Grace Kelly would have liked me.

img_1129~Kim

Going Dark?

I’ve thought about putting my blog on hold… again… for a little while, and going dark. My house is going officially on the market on August 1st, I’d be lying if I said I was ready. In fact, last year at this time, we were prepping to sell our house, and I was able to sell a few of our more significant items. Then I got pneumonia in both lungs, and had the flu after that! It took me about six months to recover. We pushed the selling of our home into the next year, where we are NOW.

If there is one thing people with fibromyalgia get good at, it is handling change! Emotional change that is. One minute we feel fine, the next is anyone’s guess! Eventually, we stop reacting and start preparing for what we know is uncertainty in our days and unforgiving nights that are full of restlessness.

One thing people with fibromyalgia are not good at is physically changing locations. It can take a fibro warrior an entire day to plan and execute one trip to the drug store, grocery store, OR hardware store. It can take one whole day to go to the doctor’s office; travel time, wait time, and examination time. A straightforward day trip can throw us into a flare for days, sometimes weeks.

With all of the above mentioned, what do you think I’m planning to do once my house sells? The hubby and I will be living in an RV fulltime, moving every two weeks from site to site … yassss! (What the hell am I smoking!?!?)

Jeff and I have researched many areas we have considered relocating to. The weather in Minnesota is not kind to a person with chronic pain. There is a saying in Minnesota, “If you don’t like the weather wait 10 minutes or drive 10 miles.” That is our weather in this state, everchanging. Instead of picking a place to move to, we are going to try it out first. (In an RV.) We are going to travel this big, beautiful United States of America and see where we will fit!

We will be purchasing this model; a 39′ Fuzion 5th Wheel Toyhauler, similar to this floorplan below. The garage will make the perfect office! We will enjoy the patio as well.

IMG_0876

 

I follow quite a few blogs of fulltime RVers. Some I follow, have fibromyalgia. All RVers have said it is the best thing they’ve ever done (there are a few exceptions) and many with fibromyalgia say they’ve never felt better. I’m betting on it!

My brother asked me, “How much time have you ever spent living in an RV?”

Me, “None.”

“Then how do you know you’ll like it? That this is what you want to do?”

“I don’t know if I will like it.”

“Well?”

“Well, I have been researching this. The hubby is all for RV living and is finally mobile with his day trading. I checked with my doctor, and she is on board, she thinks this will really benefit my health. Speaking of health, I am not going to ever get better. I have a chronic condition. I will only get worse with age, so I want to go now. I want to travel while I am mobile enough to enjoy this type of experience.”

“Sounds like you’ll be RVing then.”

So, back to going dark and shutting down my blog for a few months, no way. I need my tribe! I want to take you all with me on this experience. I want to tell you the truth, what this is really like! I’m not going to go on YouTube and tell you everything is wonderful when it is not. AND. I wouldn’t tell you anything on YouTube because there is no way I’d do my own YouTube channel! (I’m glad others have already done this, don’t get me wrong, and there are some very good ones that I follow!)

So, the good, the bad, and the ugly… it’s all coming out on I Tripped Over a Stone! I’m going to tell you like it is. I will ask you for ideas when I feel lost and look to you all for support. I will post some short slide shows from time to time on my blog. I promise to always show you the reality of living fulltime in an RV and living life on the road with fibromyalgia.  Come with me! I definitely need my tribe.

I will also be needing a clever new tagline once we are on the road! I’m open to suggestions… any ideas???

Live your best life!

img_1036-3~Kim

I’m Stuck

I don’t know how this post is going to turn out, but here it goes. Maybe if I write it down, I’ll figure it out. I’m stuck! And I need to get unstuck.

We are once again planning on putting our house on the market, and we have so much to pack I don’t know where to start. Anywhere at this point would be good!

I’ve mostly been stuck in bed and have been since the 2nd week in January! I honestly was getting over pneumonia and the flu for the significant part of January. At that point, I’d had pneumonia twice since September, and then ended up with horrible flu over Christmas. However, we are almost through April! My exhaustion, pain, and anxiety still have their way with me nearly every damn day! This has got to stop!

I’ve thought maybe it’s because I’m lazy. I was thinking perhaps I am genuinely exhibiting sloth-like characteristics (one of the seven deadly sins) and this was entirely in my control to stop this lazy behavior. If I stopped being so lazy, maybe I’d feel better?

I planned my next day. I had a schedule full of activities! I wrote down what I’d wear, eat, and when I’d clean, blog, read blogs, walk the dogs, even when I’d rest! Goodbye sloth person!

The next day I got up, got dressed, and crawled right back into bed. My back was killing me! My ears were painfully ringing. Then my anxiety kicked in, and I had a panic attack. Not my idea of a good day…

Was I freaking myself out? I could’ve prevented that panic attack, probably. Time for a new plan… I would “meander” the next day. I would trick myself into thinking nothing was going on as I got dressed, ate, and did my tasks. I must admit, it worked for about three days, then exhaustion took over. I didn’t have enough energy to do anything. I looked like a newborn Bambi when I tried to get out of bed. But I was in so much pain, I couldn’t sleep! Painsomnia is real. I’d doze off for an hour here or there but even hoping for a three-hour consecutive stint of sleep was an unobtainable goal.

This is where I am today, AWARE that this is a problem! AWARE that something has to change. AWARE that the weather’s getting nice and I need to get outdoors, not to mention pack so we can sell our house! So I’m going to do something about it. I’m going to try something drastic… I’m going to leave my home!

My siblings and I now own my dad’s old farm place in western Minnesota. This has turned into our family retreat. This Sunday, I am going to the farm by myself for one week. (One of my sisters does reside there so I won’t be completely alone.) 

I am counting on a change of scenery to get me out of the stuck place I find myself lingering in. I am relying on reduced awareness of pain and the inability to stay in bed as there are things that must be done on the farm. It is not a farm with animals but the land is farmed, and the house and surrounding grounds are huge and need constant attention.

Sometimes we need to jump out of the frying pan into the fire… don’t you think? Sometimes a change of scenery is the best gift we can give ourselves. I am slowly packing this week and am nothing short of terrified that this is not a smart move, but I have a backup plan in place (my husband will come for me if I need him). I’m tired of feeling like a lazy and sloth-like sinner!

I’m jumping!

img_0992-4~Kim

She Reached Out…

I found myself in a very unique position. As I began blogging, knowing I would be sharing things that had happened to me that were traumatic, I wavered on creating a false identity. I write poetry under the name k.Lynel. But this, blogging ‘thing,’ seemed different. I decided against it and wrote under my real name.

I thought if I could write it, maybe… just maybe I could help someone??? So I wrote the painful truth and put my contact information on my blog site. I started receiving emails! Some people just wanted to share their stories but some needed help. I answered the emails and followed up with those asking for my help. There are many people I have a bond with. One lady, in particular, recently made an incredible impact in my life, “T.”

“T” reached out, in fact, she wrote a comment on one of my past blog posts that said, “you said we could reach out to you, and I am reaching out!” We began emailing and texting from that moment on. Although I am trained in counseling, I am not licensed. “T” had me scared. I honestly thought I was too late to assist her in any way. Then, she turned a corner. She struggled, fought like hell, and faced her illness. “T” is a warrior. Recently, she actually posted in a support group I run. She has been reluctant to post, and I encouraged her to remain a member but wait to post until she felt comfortable.

The time came, and “T” posted a question in the group. The group responded with ideas. I responded with how I was glad to read her question and that I knew the group would have many helpful suggestions for her. Her comment that came back to me was truly humbling… then, I figured out all the pain, trauma, fatigue is worth it, for just one comment in my lifetime like this…

“When the woman God sent to save your life makes a suggestion, you should do your best to follow that suggestion. I honestly don’t know what I would do if you somehow weren’t in my life. Just the facts…”

(copied and printed with permission from “T”)

What a wonderful gift to receive. I felt joy! I felt a sense of purpose. I think for me, joy and purpose come from helping others.

 

Live your best life!

img_0992-4~Kim

After I Tripped; The Diagnosis (Friday Series #9)

Returning to my parent’s home in 2001 in Minnesota was comforting, yet disconcerting, and a bit embarrassing at my age. (I was 33 years old, almost 34!) I was moved into the ‘office’ and slept on a pullout couch. I don’t think I did anything the first week but cry and sleep.

My Mom brought me breakfast in bed every morning for five consecutive days. Then she announced it was time to get up! She wanted me to get back into life and make the best out of my situation. So, I tried…

It was I believe, shocking, to say the least as she watched me try to regain some sense of direction. To witness the constant daily pain I was in. To hear about the struggle, I had tried so hard to hide. 

My mom is a strong, stubborn, full-blooded Norwegian. She is a viper when it comes to her children! She fiercely loves and savagely protects all of her children. God help the person who crosses one of her own. My mom expects the same of us. Be tough, work your ass off, and make something of yourself! (She did not raise lazy kids.) Age has not been kind to her health, she fights her battles too. I love my mom.

As I was struggling to understand what was going on with me, Mom started calling medical facilities. She began with the Mayo Clinic in Rochester, Minnesota. Next, she called the University of Minnesota, Medical Clinic in Minneapolis. Then she called a doctor friend of a family member, a general practitioner in a small town 40 miles north of us. All were willing to see me, but we started with the closest option. Dr. Olson, the general practitioner.

“You have Fibromyalgia.”

“I have what?”

“It’s called Fibromyalgia Syndrome, do you want me to write it down for you?”

“Yes, please. How do I fix it?”

“You don’t…”

I learned this Fibromyalgia Syndrome ‘thing’ was called “the garbage can diagnosis.” You must be tested for everything it could possibly be [I had been]. If everything comes back negative [it did], you go through a tender spot exam [never had one of those exams until I saw Dr. Olson]. If you have these specific tender areas, you are diagnosed with Fibromyalgia Syndrome. I told my mom what the Doctor had said and begged her not to tell anyone I had the garbage can disease! I was NOT going to let this get me… I would find a cure!

I bought every book I could find. I bought every supplement that the books suggested. I did every exercise that was written in the book. I went to a mental health therapist just in case this was nothing more than a mental issue… truthfully, it was a prevalent misdiagnosis in 2001.

One evening I was watching the news with my parents. They were spotlighting a human interest story about a local physical therapist that was treating fibromyalgia patients with something called an “STS” machine. This worked on the sympathetic nervous system. He was having some success alleviating the severe pain people with fibromyalgia suffer. We looked at each other, shocked! I made a call to the physical therapist’s office the very next morning.

Dave Solheim, physical therapist guru, would change my life!

(To be continued.)

img_0430 (1)~Kim

The 8th Stage of Fibromyalgia

The first six stages of fibromyalgia were explained by a woman named A. Wise. The seventh stage of fibromyalgia was introduced by me, Kim Johnson. I am following this up with what I believe to be the eighth and final stage of fibromyalgia.

(The first six stages, *A. Wise.)

  1. You notice something is wrong. You hurt and are tired. You may begin to research to find out what is wrong with you.
  2. You are in a lot of pain and are taking some sort of medication for it. You are exhausted every day.
  3. You are in constant pain and always fatigued. You go to work, come home and sleep.
  4. Unrelenting pain and fatigue. You call into work more than you are physically there. You spend most of your days in bed. At this time, people beginning to doubt your illness because you could do things in stages 1 – 3 that you can no longer do.
  5. You have just quit or have been let go from your job, you are struggling to make ends meet. You are applying for long-term disability.
  6. You can no longer hold down any kind of job. Simple tasks you took for granted now drain all of your precious energy. Now you are not only dealing with pain, fatigue, and medications but the side effects as well. You probably now know more about fibromyalgia than your doctor. You find you are without hope.

This is a pretty abbreviated version of the six steps, but I’ve summarized the points that Ms. Wise laid out in her article. Stage six pretty much ends with you being in constant pain, fatigue, and without hope. (There had to be a seventh stage!)  I was not being left in stage six with no hope.

(Stages seven and eight, *K.Johnson.)

Stage seven for fibromyalgia sufferers would be acceptance. You live your life within the limitations placed on you by fibromyalgia. Acceptance doesn’t mean giving up. It means facing your illness with a new perspective. You find peace with that acceptance. Anger, fear, hopelessness all but disappear. You stop feeling like you are a worthless human being, and you start finding some purpose in your life.

Stage eight is management. The final stage. You have let go of what does not serve your overall sense of well-being. You are now doing what works uniquely for you! You maintain a medication/supplement schedule. You are gently exercising. You have hobbies. You are prepared for symptom changes. You found your purpose.

Just because you are in stage eight does not mean you can control your fibromyalgia.  You will still have bad days. This illness is chronic. You will know how to handle your flares as they happen and may be able to reduce the intensity. You will be well aware of how to manage all the secondary, coexisting conditions you experience with your fibromyalgia. There will always be medication changes, flares, and frequent physical and mental disruptions you will have to deal with. These types of ‘upsets’ will no longer be so overwhelming. (You have learned to roll with the punches!) You will continually seek out additional information about your disease. You advocate for fibromyalgia awareness.

I am still in stage seven; acceptance. I hope to get firmly to stage eight; management, in the next year or so. I believe we can and do re-visit some stages, especially when faced with new health challenges. We often have maintenance to do when additional health conditions arise.

What stage are you in?

(The 8th Stage of Fibromyalgia first appeared on I Tripped Over a Stone.)

img_0986~Kim

*When sharing this information, please credit A.Wise with the first 6 stages, and K. Johnson with stages seven and eight. Thank you! 

For more information, refer to the original post; The 7th Stage of Fibromyalgia.

Additional discussion can be found at; Is Remission Possible?