Save the Date!

Save the Date!  Tuesday, May 12, is Fibromyalgia & Chronic Pain Awareness Day!  Fibro Friends will be holding our annual event at Vittles of Donelson (TN) on that day from 6-8 p.m.  

We'll have door prizes, goody bags, information, and more.  There's a possibility that we'll have a couple of doctors there to speak with as well.  

Please come out and show your support by enjoying a delicious dinner.  It will be greatly appreciated.

If your business has any health related information or free items you'd like to share, please let me know.  We're putting pamphlets and things in the goody bags, and we'll also have a table of information to be shared as well.

You can contact me at here for more information.

Thanks so much!

See the event invitation on Facebook.

I Don't Look Sick...

I have, among many other things, Fibromyalgia. Sometimes it’s just a nuisance. Other times, like now, it interrupts my life. Tonight I have the joy of dealing with intense pain that I can best describe as being like a toothache, only throughout my entire body. I’m also currently enjoying restless legs, muscle cramps, itching and wheezing. So I’m sitting on the couch with my laptop, typing away, instead of sleeping in my soft bed, and that means I’ll be exhausted tomorrow. And exhaustion means more pain. Pain means no sleep -- you get the picture. It’s a nasty, vicious cycle.

But I’ve been through worse with Fibro. I have had flares that were so severe I was practically bedridden for weeks. Only to have people say something like, “But you don’t look sick.”

On a good day I’ll reply with, “Well, at least I’ve still got my looks.” On a bad day I want to shoot back with, “Yeah, well you don’t look like an idiot, but you sure just proved you can’t always go by looks.”

Yep, Fibro can make me bitchy.

The main symptom of Fibromyalgia is pain. It’s a chronic, intense pain that can appear anywhere in the body. Or everywhere. It has been described as a deep muscular ache, throbbing, stabbing, shooting, you name it. Muscles can twitch and jump. There may be complaints of numbness, tingling and burning. Muscle stiffness may be present and is usually quite pronounced early in the morning, making it difficult to “rise and shine.”

The pain can come on gradually or flare suddenly thanks to stress, fatigue, anxiety, physical activity, and even the weather.

Our bodies have 18 tender points, and the old diagnostic criteria said 11 of the 18 had to be positive for pain in order to render a diagnosis of Fibromyalgia. I’m usually positive in all 18. Sometimes just touching one of my trigger points can send waves of pain shooting throughout my body.

There are days when I’m miserable and all I want is a hug, but a hug hurts. It can lead to enormous pain, even a flare. Can you imagine that? Can you understand what It’s like when your child’s hug sends jagged shards of pain rushing throughout your entire body?

But wait… there’s more…

Yep, the pain isn’t enough. We’ve got more. How about fatigue? And I’m not talking about coming home tired after a long day. I’m talking about fatigue so severe that you can’t function. It’s an exhaustion so profound that it disrupts your life. It prevents you from working, socializing, even just functioning.

Combine that fatigue with pain and stiffness, and you have coordination issues. In my case, I find myself falling quite often. I’ve had quite a few close-up examinations of carpeting before, and they weren’t by choice.

Most with Fibro are also lucky enough to have sleep disorders. The most common disorder among Fibro folks is an abnormality in Stage 4 sleep. Bursts of awake-like brain activity cause Fibro folks to wake up numerous times throughout the night, preventing the deep, restorative sleep the body needs. And guess what that results in? If you said “pain and fatigue” then you win the prize!

Me, I seem to be a bit of an over-achiever when it comes to health problems. I have three sleep disorders. Oh yeah, one just ain’t enough. I got the hat trick.

But wait…

Try these on: irritable bowel and bladder, headaches , migraines, restless legs syndrome, periodic limb movement disorder (which includes restless leg), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and more. So much more.

How’s that for a bonus?

Yeah, I may not look sick, but I feel like hell most days.

Wait a minute… did I forget to mention Fibro fog?

I remember going to a doctor once and sitting there frustrated to the point of tears because I couldn’t describe what was going on in my head. Well, I could describe it, but I couldn’t make that doctor understand. I couldn’t get across what it was like to have to search my brain for a word, to forget my sons’ names, to get lost on my way to work because I forgot where to turn. I wasn’t talking about going to the store and forgetting an item on the grocery list. I was talking about such extreme things as forgetting how to spell my own name.

I told the doctor that I knew all of that information was in my brain, but finding it was like searching through an extremely heavy fog, a real pea soup kind of fog that you need a machete to get through. When I heard a few years later that this type of cognitive malfunction was known as Fibro fog, I laughed. Fog was how I had described it for years.

Fibro has strained almost every relationship I’ve ever had. I don’t want it to, but it does. Friends invite me places, and I tell them I’ll try to be there. I want to be there, but my body doesn’t always cooperate. Sometimes the fatigue hits my eye muscles so that I can’t focus. If I can’t focus I can’t drive, and that means I’m staying home. Headaches, IBS, pain -– they can’t be predicted. I can only hope they won’t show up on a day when I’ve got plans, and I can only hope my friends will understand if they do.

So how do I cope? Well, I have good days, and I try to make the most of those. That’s when I try to clean my dirty trailer, and goodness knows it needs it. I try to run my errands, play with the dogs, all of those physical things I can’t do most days. I just have to be careful not to overdo it. Overdoing is bad and can knock me flat on my back with a flare.

And flares are bad. They can last 6 hours, 6 days, 6 weeks or 6 months. The summer I was diagnosed was the summer I lived through a very severe 16-week flare. It was brutal.

I have other coping techniques. I take a lovely cocktail of drugs. I can’t function without them. I stretch in the shower because the hot water helps loosen up the muscles. Hot soaks in the tub with some lovely bath salts, muscle rubs, aromatherapy, massages, naps, walking when I’m able, using a cane when I need it –- they all help.

But there are still times when it takes all I’ve got just to get through the day. My skin is so sensitive that just wearing certain fabrics next to it can set off a flare. I can’t see or think straight. My stomach is a mess. I come complete with twitching muscles and a foggy brain. I just hang on because I know I’ll have a good day soon. I live for the good days.

The best coping tool I have though is my attitude. Yep, I have been blessed with Fibro, but at least I’m alive and kicking, able to enjoy time, on my good days, with my sons, family, and friends. When my legs are restless I say they’re dancing to a tune only I can hear. When the periodic limb movement has my ear moving down to my shoulder or my arms flailing about I just tell folks I’m doing an interpretive piece –- my personal tribute to My Left Foot. If I can’t remember which son is which or I’m calling one of them by the dog’s name, I’m sure to point out that the important thing is for them to know who they are.

Besides, I’ve been through worse than this. Heck, I had a stroke and open–heart surgery before I turned 40. In fact, I got to spend my 40th birthday in the hospital, hooked up to all sorts of monitors and things that go beep, with tubes coming out of my chest, neck and other places they shouldn't and that I won't mention. But that’s a story for another blog post.

Yep, I’ve been through worse than this.

Now if I can just remember where I put the muscle rub…

Some Tips I Picked During My Disability Adventure and Since

I won’t pull any punches.  The disability process is long, daunting, and demoralizing.  Why people would go through this thinking it’s easy money is beyond me.  It took me over two years, and I lost my condo in the process, which also ruined my credit.  Believe me, I would not have done that if I didn’t have to, but heart surgery, rheumatic heart disease, diastolic heart failure, two strokes, asthma, Fibromyalgia, Lupus, COPD (thanks to pulmonary hypertension and not smoking), narcolepsy, and a few other things that are currently slipping my mind thanks to cognitive impairment, made it necessary in order for me to survive.  I miss my career, and I made far more money when I was able to work, but I do what I have to because of my health.

My disability adventure took almost three years from the time I first applied to when I was approved.  I learned a few things then, and I’ve picked up a few more as I’ve watched friends, support group members, and others travel that path as well.   Maybe some of that can help you.

If you can apply for Social Security disability first on your own, do so.  You can go online and do it anytime, at your own convenience.  If you wait to have an advocate or attorney do it, you have to wait until you can get an appointment, which can take a while this time of year.  It’s usually faster and easier to take this first step on your own.

There are areas on the application that require a lot of information, so try to compile as much of that up front as you can.  Have all of your doctors' info handy -- names, addresses, phone numbers, dates of treatment, etc.  Do the same for any hospitals where you may have been treated.  You’ll be asked for the names, addresses, and phone numbers of friends and relatives that can verify what you say.  Have that information at hand as well.  Believe me, it will make the application go a lot faster and not seem quite as mind boggling.

Share as many medical records on the application that you can.  Know dates of hospitalizations.  In my case, I had medical records going back 30 years, as my "mystery illness" was very well documented.  However, there was one point in 2006 where I was fairly healthy for about six months and only saw my doctors for my required follow-ups and such.  Guess which six months they used to determine that I was well enough to work?  The SSA folks look for gaps like that, and they will find them.  That was the ONLY time period for which they requested my medical records.  They did not request records for any of the 12 times I was hospitalized in 2007 or the 7 times the next year, and they didn’t request any doctors’ records from any of my doctors during either of those two years either.  Don’t take it personally if they do that to you.  It’s just how they work.

It seems like a daunting task to do this on your own, but it’s not really as difficult as the SSA likes to make it seem, or at least it shouldn’t be.  If you’re worried about your writing skills or anything like that, have a friend help you.  It will still be faster than it usually is going to through an attorney, and every day you can save yourself in this process is one less day of stress and worry.

Odds are that your application will be denied.  Don’t take that personally either.  If you’re under 50, you can pretty much count on it, and it simply is because of your age.  They probably won’t even consider anything else.  If you’re over 50, you have a better shot of getting disability on first application, but don’t count on it either. 

You can do the first appeal on your own as well.  It’s as simple as going online and saying you request to appeal their decision.  Once that appeal is denied, you need an attorney.

I originally went with a local attorney because he came highly recommended by an acquaintance.  From what I’ve seen in the years since, I now recommend everyone go with a local attorney or practice.  I’ve seen many people dropped by their attorney during the disability process -- one was dropped only 8 days before her hearing.  Another met her attorney about 10 minutes prior to her hearing, and her attorney didn’t have a clue who she was or why she was there.  (She was denied.)  In each of these cases the attorney was not local.  They were, for the most part, those big out-of-town firms that you see on television.  They advertise their high success rates to suck you in, but those rates aren’t exactly accurate from what I’ve been able to determine.

For an attorney to declare a “win” their client must obtain a positive outcome.  If they drop a case they aren’t sure about, then they don’t have to count it.  If they have a definite win conflicting on the schedule with a maybe, they’ll always go with the definite.  The numbers that way of doing business churns out look better in the ads.   Besides, when you get one of the “big box” firms, you rarely, if ever, get one of the names on the letterhead.  You usually get a junior attorney who’s probably just looking to make a name and move up.  Those attorneys get promotions by churning out cases as fast as they can turn them.  They don’t want a case that eats up too much time.  The profit margin is too low.

A local attorney has a reputation to uphold within the community.  If they say they’ll be there for you, they need to be, or word gets around, and that’s not good for business.  They’re willing to put in more time and effort, and they’ll know who you are.  They also know the judges you may be appearing before.  They’ll know what they’re looking for, how to approach them, what to say, and how to say it.  An out-of-towner won’t know those little things, and those little things can make or break your case.

Document everything.  Every time you see a doctor, ask for a print out with why you were there, what you discussed, any changes to your care, etc.  Many doctors automatically do that these days.  (Mine do.)  Keep those papers, along with all of your lab results and anything else you can think of in a big binder.  If it gets too big, start volume two.  It will help you should you need it for court, and it could also help your doctors.  When my medical team was trying to figure out what was going on with me, I started taking my binder to every appointment.    My PCP loved it and swears it’s one of the main reasons they finally figured out what was wrong with me.  Thankfully, my doctors are all now networked via computer and keep up with that by themselves, so I don’t have to carry my binder anymore, but it sure came in handy when I was seeing one specialist after another.  It could also come in handy when you take on the IRS.  If someone says you don’t have records for a certain date, visit, or procedure, check your binder.  You may have proof at your fingertips.

Fees – When an attorney takes your case, they do so on a contingency basis, which means they only get paid if you win your claim.  This fee, as set out by the Social Security Administration, is 25% of your back pay, up to a maximum of $6,000.  The attorney cannot ask for a retainer fee or money up front. 

You will be asked to sign a form that explains the payment method.  That paper will also explain who covers any incidental fees, such as copying costs, messaging fees, and things like that, and how they should be paid.  I was fortunate because my attorney absorbed those fees, and there are others out there that do that.  Some attorneys will pay those fees and then send you a bill for them after the case is decided.  Some, especially the big TV firms, will ask for money up front to cover these fees, or will bill you as they occur.  Be aware that this upfront fee is legal, but it should NEVER be more than $200-$250, as those fees normally don’t go over $100 or $200. 

One person agreed to about $1,000 in incidental fees without realizing it.  She went with a TV firm, signed the agreement because she thought they must know what they’re doing, never met her attorney, only spoke to a paralegal on the phone twice, was dropped by the firm about two weeks prior to her hearing, scrambled to find a new attorney, ended up losing the hearing because that poor guy didn’t have a clue about her or her case, and then received a bill from the big firm for $1,000.  When she asked for an itemized statement, she discovered that she was billed for numerous phone calls and things that she never saw evidence of.  She didn’t pay them, and the bill is now in collections.

Before you sign an agreement make sure it spells out who pays those incidental fees, how much they’re expected to be, and when they’re expected to be paid.  It’s important.

If you lose your appeals but are approved for a hearing, be patient.  When I was first approved for a hearing, the wait time to even have it scheduled was something like 21 months.  Once it was scheduled, I still had to wait a few months for the hearing to take place.  It was an agonizing wait, and that’s when I ended up losing my condo.  That sure didn’t help the stress.  New judges have been added since my adventure, though, so the wait is only like 13-15 months now. 

When it’s time for the hearing, make sure you show up early.  Sometimes hearings are cancelled or rescheduled, and they’ll move right on to yours if you and your attorney are there are there.  During the hearing, you’ll do a lot more listening than talking.  That’s okay.  You’ll be asked questions.  Answer honestly.  It’s okay to show emotion, but don’t lose your temper. 

Take with you any new health information, such as a new diagnosis with documentation, any new medical situations that have arisen, any developments, new medical records, letters from your doctors, and things like that.  You may be able to give further documentation to the judge for his/her consideration.  However, your attorney may handle this for you.  I kept my attorney updated with my appointments, procedures, and hospitalizations, and he requested the records so that my file was always current and up-to-date.

One thing you might take to your hearing is letters.  Have friends, relatives, loved ones, and maybe former employers write a letter telling how your disability has affected both you and them.  Let them tell how you’ve changed, what you can no longer do, etc.  Some judges will let you read one or two of them, and some judges will take the letters with them to consider.  Not all judges do though.  Your attorney may be able to tell you if the judge assigned to your case is one of those that does accept things like that.  Your attorney can give you other information about your judge as well, such as approval and disapproval rates.  You can also get that information from the internet.

After the hearing, you wait again.  I was fortunate in that I had my decision in about 10 days.  Some people wait the full 8 weeks to receive their decision, and that’s not a pleasant wait at all.  Just hang in there.  At this point, your adventure may nearly be over.

If any of this doesn’t make sense, I apologize.  It was written in one session, straight through, with very little editing.  Thank goodness for spell and grammar check!  Anyway, if you need some clarification, just ask.

I’ve just been diagnosed with Fibromyalgia. Now What?

If you’ve just been diagnosed with Fibromyalgia, you may feel a bit overwhelmed and anxious at the moment.  That’s normal, so just take a moment and breathe.  You aren’t alone, and there is help and support available in Middle Tennessee.

First, let’s take a moment to answer a few of the questions you may have.

What is Fibromyalgia?

Fibromyalgia is a central nervous system disorder characterized most frequently by chronic pain, fatigue and cognitive impairment, although there are numerous other symptoms and issues that can arise.  It afflicts approximately 10 million Americans, with more women affected than men.  While the average age of onset is approximately 40 years of age, it can affect people of all ages, with some children diagnosed as early as age 10. 

What is the treatment?

There is no one accepted course of treatment for Fibromyalgia at this time, and there is no cure.  The best way to live with Fibromyalgia is to manage the symptoms via a rounded approach.

What is the Rounded Approach to Fibromyalgia Management?

Much like diabetes management requires a rounded and multi-faceted approach, so does Fibromyalgia.  A good model to follow may consist of:

·         Medical Management

·         Physical Management

·         Physical Modalities

·         Psychosocial Management

·         Complementary Treatments

Medical Management involves your medical team and may include medication, while Physical Management includes such things as nutrition, sleep and stress management and physical activity.  The use of heat, physical therapy and massage falls under Physical Modalities, while Psychosocial Management involves support and the aim for a normal life.  Complementary Treatments may range from such things as alternative medical treatments and supplements to yoga and Tai-chi.  

What is the long term outcome? 

Fibromyalgia could be a life-long condition, although people have been known to experience periods of remission that last years.  It varies according to the individual, their outlook and their method of management.

Will I be disabled?

Many people with Fibromyalgia go on to live fairly normal lives, and some achieve some pretty significant goals.  For instance, Chef Vinson Petrillo is the Chef De Cuisine at Prospect in Brooklyn, NY, and he recently competed on the Food Network program Chopped.  Make-up artist Nicole Chilelli recently won the Syfy competition show Face Off.  It is possible, however, that you may have to make changes in your life, and even in your job and home, in order to accommodate the problems you face on a daily basis with Fibromyalgia.

How do I get through this?

The first thing you should do is contact a good support group in your area.  People there will understand what you’re going through because they either have or are going through it as well.  The group leader and members will be able to help you gather information, they’ll provide support, and they’ll help you through this difficult time. 

You have Fibromyalgia, and you may feel alone, but you aren’t.  Reach out for help, and you’ll soon find yourself managing this confusing illness.

Fibro Friends

I’ve had Fibro since I was 10, but I wasn’t diagnosed until 2007.  Up until my diagnosis, I heard it all – You’re lazy.  You’re female; you’re going to hurt; get used to it.  There’s nothing wrong with you.  It’s all in your head.  Is it your time of the month?  I’m sure those of you with Fibro have heard those and more.

But then it finally happened.  This thing that had plagued me all of these years, this beast, it had a name.  If it had a name, then it could be fought. 

I was diagnosed by a rheumatologist while I was hospitalized with something else.  After my discharge, I saw the doctor in his office.  For a change, a doctor’s visit actually excited me.  We were finally going to tackle my mystery illness! 

The doctor came in, asked about my pain levels, gave me a prescription for Lyrica and turned to walk out the door.  Wait!  What else do I do?  “Find someone to talk to,” he tossed over his shoulder as he left.

I got on the Internet immediately and looked for a support group, but I couldn’t find an active one anywhere in the state of Tennessee.  So I put an ad in the paper and started reading and researching anything and everything I could about Fibro.  In September 2007, it was me and a newspaper ad.  In October, I had FibroFriends.  I didn’t intend to start a formal support group or anything like that.  I just did what that doctor told me to do.  I found someone to talk to.  Now, we have an online membership base of over 275, and we grow daily.  Five years ago, I thought I was alone.  Now, I know I’m not.

The fact that I’m not alone is what has encouraged me to take Fibro Friends to the next level.  It’s time to advocate and educate, in addition to support, those Tennesseans with Fibro.   We also need to educate medical professionals, whom we shouldn’t have to, and government officials.  One of the ways I intend to do my part of this is to make my presence known, offer information and assistance, just plain old speak up.    This blog is one way to do that. 

Another way to speak up is to go to medical offices and offer packets of information made up and ready to go for anyone just diagnosed with Fibro.  That way they’ll know they aren’t alone, which is how I felt.  At the time I was diagnosed, I’d spent over 30 years dealing with my “mystery illness” by myself.  When I found out the monster’s name, I suddenly felt like I was no longer alone, only to feel even more so because I couldn’t “find someone to talk to,” as I’d been advised to do.  I have Fibro Friends and others will too. 

The fog is upon me.  It’s time to close this before I garble it up even further. 

Life Interrupted

I have Fibromyalgia.  I’ve had it since I was about 10, so I’m not sure I remember how to live without it.  The difficult thing, however, is to remember to live with it.

I don’t recall my last day without pain.  I know that my first pregnancy was almost pain-free, and my second pregnancy nearly was – I mainly battled fatigue during that one, but I honestly can’t remember what it’s like to not hurt, even though I know I’ve had some decent days in the past. 

Most days I wake up, take stock of what’s aching, decide it’s an acceptable level of pain and then get up and go anyway.  In fact, I’ve done that for many years.  It’s how I managed to hold down a full-time job for so long.  But some days the pain isn’t an ache.

Sometimes the pain is like last night, a hot throb throughout my entire body, sort of like a giant toothache.  I sleep for about 29 or 30 minutes, wake up wrapped in pain, deal with the agony for about 2 hours and then doze back off again, mainly out of sheer exhaustion.  I’ve had this pain pattern on and off for years.  I’ve always assumed, since the naps are almost always to the exact minute, that this pain has something to do with my sleep cycle.

Then there’s the pain like I’m having today.  It’s a weird buzzing, like I’ve got static electricity running throughout my entire body.  It’s not the big jolts like you get when someone’s just crossed the carpet in the middle of winter and then touched a doorknob.  This version of pain is non-stop - a constant buzz that is aggravated by anything that touches me.  This is the day when it hurts to wear clothes, so I sit around in frumpy cotton stuff.  I don’t care what it looks like.  All I know is that there are times when soft cotton is the only thing that prevents me from slaughtering quite a bit of the human race.

There are sharp pains, shooting pains, even short and long pains.  There’s just pain, and there are times when it’s easy to get lost in it.  I want to just curl up in bed and cry it away.  But crying doesn’t work.  It never goes away.  I have to challenge myself.

I try not to give in to the pain often.  There are times when I do, when I just stay wrapped in my blankie, cocooned in my soft bed.  Then there are times when I challenge myself.  “Let’s see how long it takes to get to the bathroom.” 

Hey that wasn’t so bad!  Now, let’s see what I have to do to fix some breakfast.  I bet I can do it.  I just have to pace myself.  I try not to think about the entire day, the week, or anything even close to that.  I just focus on the next task at hand.  It doesn’t seem so daunting then.

I also think of those that have it worse than I do.  Yes, I hurt.  Yes, I’m exhausted.  Yes, I can’t even remember where my socks are, but I’m alive, I have a roof over my head, and my sons are healthy and doing well.  I could have it worse. 

Plus, there are a few things in this world that never fail to bring a smile to my face.  My sons are one.  I love those boys.  The Hounds of Hell, heck, even when they’re aggravating the daylights out of me, can usually make me smile.  Titan and his pitiful ears – just picture Jar Jar Binks.  The sound of a baby’s laughter – how can you not smile at that?  Kittens at play and National Lampoon’s Christmas Vacation, they both make me laugh as well.  I guess it’s a just a question of changing my perspective on bad days.

I guess Fibromyalgia may have interrupted my life.  I just have to remember to not let it stop it.  Sometimes I have to remember to live.

I Have Fibromyalgia

I have Fibromyalgia. I may not look sick, but I constantly battle this chronic illness, as do hundreds of thousands of others, some only children. While still widely misunderstood, we now know that “Fibro” is a neurosensory disorder characterized by widespread muscle pain, joint stiffness, fatigue and more.

When people ask what Fibro is like I tell them to imagine the worst case of flu they ever had, that flu that makes you ache so much that even your teeth ache, that flu that makes you feel so exhausted that it's all you can do to breathe, and then I tell them to imagine feeling that way every single day. And then imagine trying to have a life with this. When you have the flu, you call in sick. When you have Fibro, people accuse you of being lazy, being melodramatic, of imagining you're ill.

It’s not an easy life, but it’s mine.