Things to Know about Fibro Fighters

Sometimes it's not easy to voice the most relevant things in your life and often it's hard to fit in to conversations. Here a list of few things people without Fibro should know.

The pain

It's always there, every second of every day. If you don't experience it, it's very hard to even imagine. It's like carry an extra hundred pounds around with you at all times. It's a constant presence that you can't shake off. The number one thing I want in life, is not to be in pain.

What does it feel it like? It varies person to person, and the best thing you can do is talk to your Fibro Fighter about it. For me it manifests in more than one way. Whenever my skin is touched it feels like that area is bruised. This goes for any piece of clothing that touches my body, sitting down, shaking hands, hugs... Everything. 

There is also a persistent burning in all my muscles. Like I've worked out way too much. There is shooting pain, numbness, and tingling, which can be caused or happen for no apparent reason. 

This doesn't include the other manifestations that come from this disease, such as, anxiety or headaches. 

Just because your Fibro Fighter says they are feeling 'good' doesn't mean the pain is gone. It's still there, it's not so overwhelming that they can't manage. If you can wrap your mind around what it is like to have this burden with you at all times, you will be better able to understand what you Fibro Fighter is going thru. 

I'm still tired 

I may have just gotten out of bed after 9 hours... But I'm still tired. Exhausted really. Actually feel worse then when I went to bed.

How is that possible? You take sleeping pills?

That doesn't mean I sleep like I should. 

The problem is that you need to achieve deep sleep in order to feel better.  It's really hard to sleep when every nerve in your body is on overdrive. Add to that random aches and pains, such as my fingers burning because I had hand closed while I was asleep or my side feeling bruised because part of the blanket was tucked under me (yea, the princess and the pea has nothing on a Fibro Fighter!). 

I'm lucky if I sleep at all. The body needs rest to recover and with a normal day exacting an equivalent of running a half marathon without training, I need every bit of recovery I can get. The level of "good" I can feel depends greatly on sleeping. 

I'm not Lazy

I often joke about doing things the lazy way, but I'm truly not lazy. 

I want to do things. I have a list that is mile long of things I want to do. The problem is I physically can't do it. The brain or physical power it takes is just not there. It's overwhelming the desire to do so much and depressing of not be able to follow thru. 

It truly hurts to be thought of as lazy, more so than other things, because as much as I try to control it and do as much as I can, there is still so much out of grasp of doing. Your Fibro Fighter is trying, give them credit for what they have accomplished. 

Positive Thoughts Won't Cure you

Someone in my life reiterates to me, that if I'm just more positive, if I think I'm going to be better, then I will be. 

I'm aware of the studies that indicate that those with better outlook have better recovery rates, or that meditation can help the healing process, or that visualization can help aid in healing or making people feel better. I get that.

Happy thoughts will not make this go way. It's not a problem to better align my attitude to. Acting as if I was a grumpy teenage protesting that not getting on Facebook, is the end of the world! 

Overall I think I have a pretty positive outlook. I'm not depressed, my friends would probably describe me pretty cheery. I have my moments, we all do. Some days with Fibro it's impossible to even summon a laugh. But mostly I do well, I do a lot of activities. Most people aren't even aware I'm burdened by this, as I try to hide it. They'll notice I'm off at times, but a simple, I'm not feeling well usually covers it. 

I digress. My point is that, yes, I can sit in my house all day long visual me feeling better. That does not make it so, and the mere suggestion makes my stomach turn. There isn't a 'magic' fix for this. And implication that I'm not doing enough to make myself feel better is insulting and frustrating. I try, I really do. And suggesting something along this line really only points out ignorance to any knowledge of the disease and lack compassion for the person suffering. It's a downplaying of the Fibro Fighter's plight. 

I've talked about empathy in a pervious post. It cannot be under valued in any situation. 

Taking time to know and understand your body and focus on what you can do to improve is great, I recommend it, but sitting round 'thinking happy thoughts' will not make this vanish. 

It's the fog 

Did you email that to me? Oh we talked about doing that Tuesday? What's the name of that thing? 

Yea, I don't remember. When the fog takes over there's a empty person where I use to be. I might make my way back, or remember a tiny detail, but chances are it's better to keep reminding me of things and make sure it's on my calendar or written down. Otherwise... It's lost in Fibro land. 

When you need to have an important conversation, wait until your Fibro Fighter is in a good state of mind or relaxed. Don't spring things on them during a busy grocery store run and be upset that it slipped their mind.

There are lots of times where my brain simply stops on a word or loses an idea, and it's impossible to overcome. When too much is going on when a Fibro Fighter is in that state, it easy for them to get over anxious or simply give up. Try to see it from their point, your brain is overloaded with pain, youve had no sleep, and there is just no way to even think at this point. What would you do?

And come on, a lot of people are just as forgetful and don't have nearly the excuse ;) 

You're a Non-fighter in Pain

That's okay. You don't have to suffer in silence. Granted, if your sore from doing 100 squats at the gym, be prepared for an eye roll. 

I'll say it again: there are much worst things in this world than Fibro. My daily trials can be petty in comparison. I have many friends who struggle with conditions of their own and it's always a honor to be an ear to listen their trials. Some of which far surpass my experiences. As much as I hate that others suffer, it is comforting to know that there are people who can relate in some way. They too are facing a terribly uncooperative body, and the terror and frustration that comes with that. 

There are also things that are trivial in comparison to Fibro. And rarely I will (hopefully nicely) remind some people of that. Merely in hopes that another perspective of a situation helps. There is a fine line though, and Fibro Fighters have to remember that while we feel like Atlas, we must still be empathic to others. 

Any hurt, anxiety, tiredness, that you feel is opportunity to talk about pain. Fibro Fighters need to talk about what they are going thru and your experience may help or be a catalyst to open up that dialogue. My wrist feels like this, does your pain ever feel similar? This may also help you get a better perspective of what your Fibro Fighter is facing.  

It's ok to get frustrated... Once in awhile. 

I'm soooo not easy to live with. I know it. My husband is pretty awesome. He's very supportive and tries to help where he can. He does a lot of things, so I don't have to. But he also is smart enough to give me a little attitude once in awhile to keep me moving and on the right track. Having someone around who is willing to help you balance is a good thing. And say you can go fetch that yourself today, is okay. But remember there are days when those little pushes will not be helpful so communicating and balancing with those around you is important. 

Don't make things harder

I have my kitchen set up so I can reach everything to make a meal, with as little effort as possible on my part. Same goes for the rest of my house. I have things set in places to minimize the amount of work I have to do and thereby not waste precious energy. I have four laundry hamper in three rooms. That should save me the energy of stepping over dirty laundry or picking it up off the ground. My husband doesn't understand why I loose it, when I trip over a pair of his pants on the floor or if my kitchen scissors, which I use to open most everything, aren't in the drawer. 

Be aware of what your your Fibro Fighter has done to make their life work for them. Something that seems silly or so easy to you, but it might make all the difference to them. 

Research

Do your homework. It would mean more for a friend to come up to me and say they read the wiki entry on Fibro, than just always asking me how I feel. 

A Little Help

Don't underestimate how hard it is for Fibro Fighters to do things, any little help is greatly appreciated.

Fibro Fighters if you have anything to add, please let me know!

Vertigo

So the reason I have been so neglectful of my blog posts is a wonderful little problem called Vertigo. It's been going on since December of last year and has been so all encompassing of my life that I've had little thought other than battling thru my days.

My vertigo can be anything from a mild dizziness to the room in constant spinning motion for days on end.

At first, I was directed to a neurologist, and after the MRI and CT turned up normal, he decided (mind you, without finishing listening to medical history and cutting me off) that it had to be related to my migraines, which I've had most of my life. After months of careful monitoring and I've decided that the diagnosis is tenuous at best. There seems to be no correlations between actual headaches and the dizziness. I think it's much more likely that it's a new fun side of the Fibro.

I've been to the Fibro doctor, whom I adore, and we trying a new round of meds, so far it's helping.

I'm wondering if any other Fibro Fighters have any similar experiences.

Empathy

No matter how a person is suffering, it's important to remember: empathy. 

This is a fantastic video about empathy. If you have a Fibro Fighter in your life, remember this when trying to help them! 

http://youtu.be/1Evwgu369Jw

Fibro Medical Crossover

It's easy to tell when something's not right for most people. With Fibro it's harder. Today for instance I've been having bouts of dizziness. 

Now I occasionally have dizziness along with my other symptoms so it's hard to decipher if there is another cause. Do I rush to the doctor to ask them to figure it out, when they will most likely point back at the Fibro first even if another cause surfaces eventually?

This goes along with many other things, sudden chest pain being a great example. Most people would be alarmed, but that's fairly common for me. Should there be a serious issue that arises down the road, I'm more scared that I won't know to seek help. Numbness and flu like symptoms are pretty common among Fibro suffers, so it's really hard to know when there is something else going on. In fact if you look to most major clues of many illness, Fibro patients will have several of the symptoms on a normal basis. 

I'm worried for my overall health that these symptom will mask something that will eventually be life threatening. 

The Diagnosis

I can't remember when I wasn't tired, when it first started, or when I truly knew something was wrong. I feel like all these symptoms have roots farther back then I could comprehend. I've dealt with them as normal for so long, that it's hard to tell when that 'nerve switch' in my brain truly broke. However, I can tell you my doctors experiences.

I've had anxiety issues since I was a child, migraines starting around the time I was 10, and panic attacks starting when I was about 14. These can be triggered by environmental cause or normal stresses. Looking back at my symptoms and I would like to say my Fibro probably began around the time I was 18 or 19. I lived a stressful life style from early  High school, thru my mid twenties, working or studying in Technical Theatre. It's show  business, and I was often calling the shots... curtain up, lights go. When I was in school my day normally started at 6 am and ended between midnight and 1 am about 6 days a week (college was better! I didn't get up till 8 or 9 and went to bed around 2 am!) Between school, studying, and working on productions, I filled every minute of my days. By the time I entered the work force I was already feeling the drain, but would push thru. Working as hard as I did, it was so easy to explain way the pain, the memory problems, stress, and tiredness. Of course you're tired when you worked 90 hours this week and haven't had a day off in three weeks. 

It took me a long time to admit something was wrong, and when I finally did, I had the answer of what was wrong. My Father has a debilitating form of arthritis, that affects the majority of his joints and was diagnosed in his early twenties, I was sure I had inherited this family legacy. When I finally walked into a rheumatologist, I presented the information that knew was relevant.  The additional anxiety and sleeplessness was normal for in my line of work, or so I thought. The doctors began treatments on arthritis, which seemed to fail miserably, by which time I started adding daily medications for migraine preventatives,  anti anxiety meds, and anti depressants, as I finally had enough with multiple panic attacks a day. 

Theses trials were miserable. With in a matter of month I went from 116 lbs to 160 lb. I finally gave up on the meds and as I was having terrible reactions to some of them and nothing seemed to be working. I saw what the medications had done to my father over the years, and the detriment seemed to out weigh the good, in this case. It seemed hopeless and I quit seeing the multiple doctors, stopped taking every medication. I gave up. 

With my work performance suffering, as I could barely drag myself from bed every day and no one there was willing to support me thru my struggles, a change of career was forced upon me. 

I left the career that I loved, but I realized I needed a complete change and took a much simpler job, with much lower stress. I found wonderful people to work with too. 

 I still believed arthritis was the cause. And for years I continued struggling to manage my every day life and believing I just needed to push thru because there was nothing I could do. 

I married my amazing husband this year. And the word amazing truly doesn't begin to describe how wonderful this man is or how lucky I am! 

Before we were married, a relocation made me a 'homemaker', as we are in the middle of no where (yay Air Force). So I'm as stress free and happy as I've ever been. Thing should have been better right? Not quite. 

My husband finally convinced me to seek help this summer, as daily chores were often impossibly hard, naps were often a requirement, sleep was illusive at best, my memory was terrible, and the pain still haunts my every second of being.  Not only that but he insisted on going with me. 

I asked my doctor for a referral to a rheumatologist, and ended up with a referral to an internal medicine specialist. 

When went I gave my history and diagnosis as fully as I possibly could. The doctor just began to shake his head. And followed that with 'I don't think you have arthritis'.  He probably caught the skeptical look from me to hubby, because I was sure he was a quack. He asked me if I knew what fibromyalgia was. I had heard of it, but didn't know much at all. He had me get up on the table and do the pressure point test. 

Now some of the points make me want to jump off the table. But mainly they are just really uncomfortable to the touch. Now if other doctors had done that before I may not have said that uncomfortable pain causes by the touch hurt, because I thought that was normal, 'everyone hurts when you poke them'. I thought in order for it to be 'hurt' it had to be terrible pain. I'm wiser now. 

I left the doctors office in slight disbelief. The doctor had been very knowledgable and he had ordered a full scale of tests and an X-ray. He bid me go home a research fibromyalgia.

I got home and later that night typed fibromyalgia in to my google search and started pursing reputable sites for information. 

As I searched symptoms and others experiences crossed my path for the first time, it was revelation for me. The 'Fibro fog' reading that, understanding, 'that's me!! That's exactly what happens!'. The types of pain. The stress and migraines. The ice cold but sweaty hand that my husband laughs at all the time! Everything fell 'snap' into place. It was almost a relief to know. 

After we sorted thru the tests the doctor said something that truly surprised me. We had agreed that Fibro was the culprit and while I was relieved to have answers finally at tips of my fingers, he said 'I know it's not what you wanted to hear, there isn't much worse in the world than this.'

A life time of pain, and inability to live each day to fullest. I was already prepared for that. But it's still crushing and inevitable. 

I have the diagnosis and this time I'm sure it's right. I can work to improve what I can everyday. It will never be cured, but I have a wonderful husband, who he tries to understand and he supports me to take care of myself. That is more than I could have asked for. 

The diagnosis sucks, but still count myself very lucky to be alive and living a great life. 

Pain and Symptoms

I don't know what everyone else's pain is like, but I'm going to try to describe mine. There is a constant persistent ache, which radiates mainly from point of use, like joints, or muscles that have been frequently used or not used enough. It's hard to describe. It somewhere between a dull burn and the feeling of a bruise which you are constantly pushing on, most of the time, but it can become a sharp and intense. Squeezing my hand in a ball and trying to open it is similar to straining several muscles and trying to move them. Sitting on the floor and trying to stand up after... That's one of the worst for me. It's like my leg have simultaneously fallen asleep and having the muscle strain of running several miles. Accompanied by pins and needles but on incredibly sore muscles. 

These feelings never goes away. Never. 

Probably the worst part of the pain is knowing that it will always be there. It's so frustrating to lie in bed and want so desperately for there just to be a few moments relief. But it will never go away and the crushing knowledge of that, is at times, overwhelming. 

And then comes the tiredness. The sudden smack in the face of brick wall, in which everything goes fuzzy. It's like a snickers commercial but the only remedy is sleep, which is sporadic at best. The 'fibro fog' as its usually referred to. Easiest way to describe it is looking directly at my husband while he's talking, and I see his lips moving, I hear words, but I can't process any of it. When I finally slow him down from what might as well be chipmunk speed,  to slow motion, and manage to hear the question, it's obvious that the conversation has become pointless. Whatever the question is I can't remember. What did I have for lunch? Well I don't remember. I can rack my brain and figure it out... Or best option: before I throw a toddler size tantrum, give myself a nap time. I swear it's a regression in to the 'terrible twos' every time that happens. Just like an overtired little one, I'm done. Overstimulated and about to burst with anxiety. 

The tiredness also affect every motion I take in the day. I know how much energy it's going to take to bend over and pick up the object that has fallen. I know what muscles will hurt and how much it will drain me. Is it worth adding all those little things on to the pile off things I have to do today? I need to go get groceries today... Will I have the  energy or strength to carry them in the house if I bother to pick up every dog toy strew thru the house, or is my energy better spent accomplishing the important tasks today. I truly feel like I'm a video game character with a health bar that goes down with every action and I have to carefully use each section of the bar before in order to reach the end of my day. 

I'm starting this blog because I need to know I'm not the only one, and to help those around me understand what I'm going thru. So please feel free to comment.