A Picture is Worth A Thousand Words

How does a person explain Fibromyalgia to someone who doesn't have it? I found different pictures on the internet which I have copied. I did not take these pictures or create them. I am not even sure who they are all from, but I wish to thank whoever did them for expressing such feelings and emotions in them. As an FMS sufferer, I am sure you will relate to them. Please share some of your own as well. Thank You!

On the Road Again

The other day while driving to work I was hoping the heat had been turned on, the coffee pot was going and the day would less stressful. Yeah, keep dreaming Kelly. Keep dreaming. By the way…did I ever tell you I am an optimist? So, the day was more stressful than usual, I never did get that cup of coffee, nor was the heat turned on, I don’t know about you, but I can’t work in a 56 degree office. It was turned on the next day. Woohoo! Hey, I will take what I can get. On my journey to Stressville, I realized there had been frost on my window that morning and I would need to soon find my ice scraper. This means getting up earlier, starting the car and letting the defroster do the majority of the work. The thing about having FMS in your arms and shoulders is that you become acutely aware of your limitations. Mind you, this is just my personal opinion, but when my FMS moved upward from my legs to my shoulders, arms and hands, I felt I had to become more aware, more careful of my actions. I never thought before about how much I used my arms and shoulders in the average day.

Traveling by car on cold days such as this or when experiencing Breakthrough Pain can be a chore, even difficult at times, just turning the steering wheel can be excruciating. I have found using a lap quilt with cotton batting helps. (I use a cotton batting as it tends be warmer than a poly filling.) I place the quilt over my shoulder and arm closest the door. I might look like a dork with the “shoulder quilt” but honestly, I would rather be comfortable than chic. My husband and I are also fortunate enough to have vehicles with separate heat and air controls for driver and passenger. This is a great help when traveling. I can have as much warmth and heat as I want. Let’s face it, I’m a calorie slut. If I had my way, I would be surrounded in velvet or fur on cold days.

Something else I think about while traveling a lengthy distance is what my time schedule is going to be. Will I need pain medication before I get to my destination? Is it within reach or am I going to have to dig for it? Do I need to take food, drink milk or a full glass of water with the medication? Did I bring extra just in case I stay longer than anticipated? So many questions, the solution? Just take all my meds with me. Let’s face it, its just easier that way. I wasn’t a boy scout, but I do believe in being prepared and I have been caught without my medication before. By being prepared, I also cut down on the worries and stress. I know I will be taken care. Whether I am traveling by plane, train, automobile, bus or ship, I need to consider the length of my traveling time and being comfortable so that I can enjoy the traveling as much as the destination. It’s the little things in life that make us happy. Right now, warm and painless shoulders would make me so happy. So the next time you get on the road again, remember to think about the trip. You can be prepared and comfortable. Oh….and don’t forget to buckle up!

Comment from Anonymous

In response to your comment posted on Breakthrough Pain; I feel your pain as do many other sufferers of Fibromyalgia. The pain experienced is hard for some to understand because you do look "normal".  I haven’t been on for a few days because I was having extreme pain from the weather changing and some work related stress, which just didn’t help matters.

As you mentioned, depression often accompanies FMS and is even a side effect of some medications taken for FMS. It does at times seem like a no win situation, but I have vowed, it won’t get me down. I may have to change my goals for retirement and vacation spots. No more summersaults, trampoline jumping or gymnastics in the near future. But like you, I would settle for getting some work done around the house, to not hurt as I lift my arms to fold the clothes or hang them up. I feel like a slug as I trudge along trying to get things done. Things get dusty or pile up and I know you like a clean house as I do. I too, like to have things organized. I keep opening one particular kitchen cupboard and every time I do, I cringe as I want to shut it because I know I will have to get on my hands and knees to find what I am looking for. So while I am down there, why don’t I just organize it? Because like you, it seems to always be a fibro day lately. Oh, how I wish I had a Merry Maid to clean and organize my house. Okay, so maybe I should set a goal for myself.

Twice a year I usually do a “spring cleaning”. I failed to complete the second cleaning before fall came along as I too busy with our summer of tornados and a recent straight line wind that just tore apart my newly restored shed. So here’s my fall and winter goal: take one day a week to clean one room in my house. As most people I have more than 7 rooms, but if I spread this out over a two week period, I can do this. I am not talking get down and dirty, but clean the surface dirt, dust a little and pick up. Of course I will do the bathroom and dishes most everyday, but that goes without saying. Good thing I own a dishwasher, oh wait….I just received a recall letter on mine. Scrap that idea. So I will enlist some help doing the dishes during the colder months. I will try to take one day a month to do some deep cleaning, maybe organize something. It may end up being just one cupboard, but often it will lead to several cupboards. My house should stay clean enough for the winter, but I will be ready and waiting for the spring clean, that’s for sure. I know I seem awfully optimistic right now, but I have to try. No one will do it if I don’t. I may not get the help around the house that I would like to get, but I can ask for it. Ultimately it is up to me.

I have found I must remind some people that I cannot do certain things, to not take the rail road tracks so hard, or to please let me sleep in on the weekend if I can. It is up to me to remind others how I feel. You can do this without sounding whiney. Do what you can, at times going a little beyond, but if you go past your limits, take the time to get your strength back.

What others do not realize, is how experiencing pain drains your body. It takes your energy, it steals your time. Because it steals your time, you have to make time for yourself. It may seem selfish to some, but you need to do this. You need to rest to let your muscles and your mind regain their strength. How we will get others to understand this, I don’t know. Maybe we can educate them in a kind way. Maybe blogs like this can help educate others. I don’t claim to know everything. I can only share what I have learned from personal experience or information I have seen relating to Fibromyalgia. I do know that positive thinking can free you from some of the trappings of FMS. If it is hard to keep a positive mental image, try keeping a positive object. What I mean to say is, try keeping a single object in each room, like a photograph, a keepsake, a book, and candle, anything that will make you smile when you see it. I do this. No, I don’t have a house full of tchotchkes and trinkets gathering dust. Which is a good thing as that would mean even more dusting for me! Take delight in the little things; take delight in family and friends. Positive thinking has proven to help physical ailments.

I make sure I smile each night as I fall asleep. Kind of a silly thing really, but I do it. I might be grumpy when I wake up, but at least I try to go to bed smiling. I might be a bad mood, tired or hurting, but even when I force myself to smile, I find it makes me happy. Maybe not right away, but there is something about a smile that can change your mood. Ever have a bad day and you meet a kind happy person and they make you smile? Be that person. Look at yourself in the mirror and smile. Let the tired you see the happy you. Make yourself smile. It might take some work, but we can at least try. So I leave you with these thoughts: we will get through this, people will understand someday, we will like ourselves and we will accept the changes that affect our lives. Oh, and smile….it makes people wonder what you’re up to!

Wizard of Oz

Fall is settling in, tornados are popping up; it’s that time of year you can find The Wizard of Oz on one satellite channel or another. So grab your ruby slippers and we’ll be off to see the wizard, the wonderful Wizard of Oz! Dorothy wanted to get back home; the scarecrow wanted a brain, the tin man a heart and the cowardly lion courage. What would you ask for? Honestly….what would you ask for? I gave this much thought the other day while waiting out another tornado warning.

Like the scarecrow; “I could while away the hours, conferrin’ with the flowers, consultin' with the rain. And my head I'd be a scratchin', while my thoughts were busy hatchin', if I only had” no pain. Okay, so I changed the words, but think about what you could do if you had no pain! You could take on the world. Like the scarecrow, you can already do that. The power lies within you. With or without pain, I believe we can make the most of our world. Don’t count your bad days, concentrate on the good days.

As for the cowardly lion; “I'm afraid there's no denyin', I'm just a dandy-lion, a fate I don't deserve. I'm sure I could show my prowess, be a lion, not a mouse, if I only had the nerve.” No one feels they deserve the pain of Fibromyalgia. Well, unless you are a masochist that is. And as for nerves….well, I am afraid that’s the problem. I have way too many sensitive nerves. The lion didn’t know what he was asking for. Trust me on this one. I would love the courage to deal with this some days. There are days I want to hide myself away, to hibernate. Like you, I have had courage all along. We trudge on finding the courage to deal with Fibromyalgia. And like that field of poppies, sometimes we just want to lay down and go to sleep, but we do walk on.

The Wizard of Oz told the tin man: “A heart is not judged by how much you love; but by how much you are loved by others.”  I agree with the Wizard on this one. Count yourself fortunate if you have friends, true friends that share your good days as well as your bad days. Take the focus off yourself and shift it towards your friends. You will be happier for it and you may even find yourself in less pain. While the mind is busy it allows you to focus on things other than pain. Keep the mind busy.

Right now, my wizard is my pain relief. However that relief comes; be it the medical community, stress relieving exercises, hot showers or soaks in the tub, sleeping in a comfortable bed, the support and love of friends, curling up with a good book, or writing this blog, I find relief where I can. Like Dorothy, I didn’t really need the ruby slippers; I had the power all along. So keep the ruby slippers on if they make you feel better. Just remember to click your heels. Maybe someday when they find a cure for FMS, we can all look back on this as a dream as Dorothy did.

The Trials of Fibromyalgia

While surfing the net, I found a site that listed current clinical trials for those that suffer from Fibromyalgia. You can take a more active part in your own healthcare by participating in clinical trials. By participating in a clinical trial, you may be able to receive a form of treatment not yet available to the public. The results from these trials may advance medical research helping others as well as yourself. These trials can often help answer questions encompassing Fibromyalgia.

Clinical Trials are available in various states and countries. The following link will allow you to view open trials by category. Each category lists the areas in which the specific trials are available.

Trials available are:

·        Alternative Therapies 

·        Biofeedback and Cognitive Behavioral Therapy (CBT)

·        Fatigue

·        Devices

·        Juvenile Fibromyalgia (FM in children)

·        Medications

·        Non-pharmacological Treatments

·        Sleep

·        Other

·        International Trials

To access the link, please click below

http://www.fmaware.org/site/PageServer?pagename=research_clinicalTrials

Trials and tribulations befall us all, so why not undergo a trial that may benefit you or another person suffering from Fibromyalgia? A clinical trial may not be for you, then again, it may be just what you needed and you never knew it. I look back on a clinical trial for Lyrica that was done at the local University Hospital a few years back. I would have found relief from the majority of my pain a year sooner. I think I will check into a trial. Couldn’t hurt…well it might, but then again, progress is never painless. 

Life is like a box of chocolates, you never know what you’re gonna get!

Repetition For Emphasis

Recently I posted in one of my blogs, that I was fortunate as I have an understanding employer. Let me rephrase that:  I thought I had an understanding employer, with had being the operative word. I also mentioned you should discuss your Fibromyalgia with your Human Resources Department. That is difficult to do when your job covers being the HR representative.

It seems every change of season; I have painful fibro days that restrict me. This is normal for me and has been for several years. When I was diagnosed with Fibromyalgia, I took in a pamphlet and some articles off of the internet so that my employer could better understand what I was dealing with and how we could work around it. I asked that we just reduce my hours somewhat when I needed to. There would be weeks or months that I would be fine. After a year or so my Fibromyalgia migrated to another part of my body. Now I suffer from FMS mostly in the upper part of my body. (We won’t mention the OA or Spinal Stenosis in my lower back.)  Since the migration, I have found repetitive tasks almost unbearable at times. Lifting heavy or awkward objects aggravate the shoulders and arms. There are times I feel useless, especially when my job entails not only HR, but customer service, managing a stain glass department and at times working in the flat glass division as well. (Let me just say, plated glass is heavier than you think and working in a cold warehouse doesn’t help either.) I trudge along as best I can and try to do the best I can.

A couple of years ago my employer suggested I work afternoons only. I explained that there may be days when I could not work at all as that when I had breakthrough pain, I was in too much pain as no medication helped, and I would make mistakes when in pain. In a business where you have to pay out of pocket for errors you make, I could not afford to be making mistakes in my work. There would just be some days I would have to take off. My pain didn’t have a schedule, it just happened.

Every fall and winter we go through this scenario, when the weather pattern changes, it seems to affect my Fibromyalgia. It’s not so bad when it is a high pressure system, but for some reason a lower pressure system that brings rain with it seems to take its toll. So I was a little surprised when I was met with some resistance today. My employer wanted information from my doctor saying I had Fibromyalgia and how it affects me. (Ummmm….Hello….I supplied you with that information a few years ago and I even brought in a pamphlet and printed information so that you would understand this….(heavy sigh). I called my doctor’s office and their reply was for my employer to look it up online.  (This is not the first time they have dealt with my employer. I think I heard a heavy sigh from the person on the other end of the phone as well.) Ah, here we go again. It seems to have become a yearly ritual. Why do I forget this? Oh, it must be the fibro fog! Maybe my employer has fibro fog as well. Oh well….So we go through this never ending process of explaining everything (again).

The lesson learned? Repetition for emphasis. Evidently you must continue to explain to others just what Fibromyalgia does to your body. Do not get exasperated, the stress doesn’t help your body. Be patient with others and hope that maybe, just maybe someday they will understand Fibromyalgia as well as you do.  

Breakthrough Pain

BTP or Breakthrough Pain has always been associated with Cancer patients. Pain specialists are now applying the term with pain patients that have the same type of sudden severe pain flares. In a recent study published by the Journal of Opioid Management, they found that non-cancer patients suffered from breakthrough pain more than those with cancer. The trouble with breakthrough pain is that nothing helps. The prescribed pain medication does not work, hence the term: “Break-through” as the pain breaks through the barrier level of medication.

Whether you call them flares, flare-ups or BTP, the pain is often severe and debilitating.  It can come on suddenly or when doing certain tasks. Breakthrough pain will usually reach its peak intensity after a few minutes and lasts anywhere from 30 to 60 minutes. The Breakthrough Pain may also cycle off and on for several hours, causing sleep disturbances and quality of life issues not to mention financial hardships. My understanding is that this is different from the pain felt with “end-of-dose failure”. End of dose failure tends to happen when you are on a long acting opioid and it should last for 12 hours, but in some persons tends to last 8 to 10 hours.  As an individual, you have reached your end of dose cycle.

I started keeping mental notes of when I have a flare up. I have since changed some of my work and everyday habits. In order to maintain a quality of life, I have made my work associates aware of what I can and cannot do. I ask for assistance in doing certain tasks that involve lifting or moving of awkward items. When met with resistance I ask them if they would want me to be to work tomorrow or off for a week due to pain. That usually gets me the needed help. Mind you, this tactic doesn’t always work, but it does help on occasion. I am not so inflexible that I refuse to do something (unless it’s way out of my ability). The key is to remain flexible in situations. There are times when you will have to do things that bother your Fibromyalgia. Life is that way. By working with the fibro and your limitations, you will garner respect from your fellow associates and your boss. Even though you may not want to share your limitations with others, it may be best to do so. Speak with your Human Resources Dept., this is one of the reasons they exist.

Home may be a different situation altogether. You may not have the luxury to “not do” certain things. Sometimes you have to be your own caregiver. On fibro days that I have Breakthrough Pain and it affects my shoulders and arms, I cannot fold laundry nor do the dishes. Pacing oneself and getting plenty of rest is all you can do sometimes. This will always affect your relationship with family members. It will affect your quality of life. It will increase your medical expenses. You don’t have to like it, but you do have to accept this. Another thing that must be accepted is that BTP can just happen.

According to the American Pain Foundation; people can experience severe flares an average of twice a day. Their researchers also estimate that more than 80% of people taking long-acting medications for chronic pain experience breakthrough pain.

I had several flare ups this week. I did miss one day of work. The nice thing is my boss understands I can no longer do the things I used to do. Fortunately I have proven to be a valued employee as I am sure most bosses would have found a way to get rid of me by now. I continue to take my prescribed medication. If I did not, I am afraid I would not be able to function as well as I do. I would hate to think what BTP would feel like if I were not on pain medication.

Tell your doctor if you are experiencing Breakthrough Pain. Rate your pain and try to keep track of it. You can help your doctors’ treatment of your Fibromyalgia better by understanding your body better. Communicate with your doctor, your family, friends, co-workers. Don’t become a whiner, do become a better communicator.