What does Fibromyalgia and Chronic Fatigue Syndrome feel like?

You have always been an active and hard working person.  You are now 40 years old.  You start getting more and more tired, and at the same time you start having these weird pains, first along your elbows, then on your shoulders.  You work out at the gym religiously.  You only go to the doctor for your asthma and allery checkups every three months, you get your blood work done yearly, and you get your yearly pap smears.  No problem; just ignore the pain and take it easy on the heavy weightlifting.  Maybe you're just not stretching properly before your workouts.  You start drinking more coffee to combat the fatigue.

Fast forward a few years.  Those odd pains you were having in your elbows and shoulders are now felt in your wrists, knees, ankles and thighs.  You joke that you're just getting old.  Despite stretching before working out, the pain persists.  You take some over the counter painkillers and the pain subsides.....a bit....and only temporarily, before it comes back with a vengeance. You finally see a rheumatologist who diagnoses arthritis and fibromyalgia.  She prescribes medication and instructs you to return in three months.  You make the appointment.  You then get a letter saying that this doctor has left the practice and there is a year-long wait to see another rheumy.  When the prescription runs out, you just double up on the tylenols and motrins.  You don't want to miss work, and you are too busy to be going to doctors.  You decide it's mind over matter, and the pain subsides for awhile, not realizing it's just a temporary remission of symptoms.

You are now in your late forties, and you notice that the pain is accompanied by a feverish feeling and horrible fatigue.  You take your temperature and it's normal.  You drink gallons of coffee and it doesn't wake you up, but you start to get horrible heart palpitations.  Yes, you're tired while having palpitations.  Doesn't make sense.....does it?  You have many other physical and mental problems, but right now this fibro/fatigue crap is driving you bonkers.

You have moved to a new state where you find a job you really like.  You need to find new doctors.  You can't find a rheumy who will see you any time soon.  You get treated by the family doctor you find in your employer's book of participating providers for your crappy company healthcare plan.  Medicines prescribed, bloodwork taken, few, if any answers found.  You have to stop working because of your medical problems.  At the time, you don't realize that it's the combination of all these things that are holding you down, and it's driving you crazy.  But, just for the moment, let's PRETEND that it's ONLY the fibro/fatigue that you have and you are otherwise healthy, both physically and mentally.

Fibromyalgia and Chronic Fatigue Syndrome will hold you down and make you feel like you are trapped inside a bubble that you can't burst out of.  You want to get up and do things.  You want to get up and clean the house, exercise, cook, work, make love with your spouse, wrestle with your pets, and all of the things that normal people do.  You want to take vacations, go to the beach, splash around in the pool and lounge in the sun on your days off.  But you can't because there is a fog over your body.  Much of the time you feel fever aches and sometimes chills running through your body and you are in a trance.  It's like you constantly have the flu, and you feel helpless.

Any little burst of energy you have makes you happy, and you take advantage of it.  You may do a few dishes, nuke something for dinner and do a few yoga stretches.  You walk to the mailbox and may even sweep the floor.  Yes, you are having a good day today.  You try to do as much as you can on your good days, because you don't know what tomorrow will bring.  Tomorrow comes and you realize that it's a good thing that you accomplished those chores the day before, because today is not going to be one of those days.  You are in EXTREME pain today.  Your lower back hurts like crazy just from standing at the sink doing those few dishes.  No amount of coffee will wake you up.  You are in a full fibro/CFS flareup.  And it is hell on earth.

A common complaint of people who have fibromyalgia and chronic fatigue is the criticism they get from others, even in their own family.  I went online and found that there are others out there who suffer like I do.  I even found that fibro and chronic fatigue often go together.  And because it is not easily diagnosed by bloodwork the way other diseases are, we are often accused of faking.  Believe me, I would not wish this on my worst enemy....well, maybe I would, but just for a day or two so they can see what I go through.  Then maybe they will wake up with a changed attitude, sort of like Scrooge did after the three Christmas ghosts visited him.

There are several drugs on the market that help fibromyalgia, and they do take the edge off the pain, but the fatigue is not easy to treat.  I have been given Vitamin B12 shots, concentrated iron doses and prescription Vitamin D supplements, which have only given me temporary relief.  Trying to get assistance from Uncle Sam in the form of Social Security Disability is an uphill battle, to say the least.  And once the insurance runs out from the last job you worked at, you're stuck with the low cost clinics, who are often quick to judge you as a malingerer and throw you in the pile with the people who will do anything to avoid working.

If you don't have serious depression at the beginning of your journey into the hell of fibro/fatigue, you are sure to have it once you are in the "bubble", fighting desperately to get out.  If you have fibro/fatigue, I will pray for you.  If you don't have it, then get on your knees and thank the man upstairs!  And, would you please pray for me and others who have it?...................

to be continued.....when I have the energy, that is................

My Exciting New Careers According to the Social Security Administration

Wow, I've got a GREAT future in my career potentials now.  I just can't contain my excitement.  Here is what the Social Security Administration says I can do in gainful employment.  Oh Boy!

I can be a "Pen and pencil bander".  Wow, that is so exciting.  My college degree should REALLY come in handy on this one since I am actually SMART enough to tell the difference between a pen and a pencil.  My O.C.D. will also serve me well in this new career, as I pause to study each set that I band to make sure they match up PERFECTLY.  As long as the pen and pencil banding employer who is lucky enough to snag me isn't picky about how LONG it takes me to do my job, I just MAY be named "Employee of the Year" for my perfect pen and pencil banding works of art!

I also qualify to be a "garment sorter".  Ooh, the fashionista in me can really come to life with this one.  As I pick through piles of frumpy polyester pants and stretchy socks, I can rub the fine fabrics against my face and just BREATHE in the quality workmanship.  I can daydream that I will be the next top model or designer in the dollar store catalogs.  Why oh why did I wait so LONG to realize my true calling.  Watch out world, here I come!

And most exciting of all is the title of "Lump Inspector for Tobacco Industry".  Ummm......I get a lump in my throat just thinking about it, and my heart does little pitter patters as I picture myself on a beach somewhere in the tropics.  Just the thought of it makes me want to heave a havana!

Are you in healthy enough to work? Well....it depends on who you ask........

You are attempting to get SSDI/SSI because you are not even feeling well enough to get out of bed on many days.  Sweeping the floor or doing dishes feels as challenging as climbing Mount Everest.  The doctor you have trusted and paid large sums of money to over the years either doesn't really get the gist of how a medical record should look to reflect ALL of the facts, or he is one of those old timers who feels you should work until you "drop".  There is also a possibility that the good doctor feels that he is failing if your condition is not improving, so will note improvements that don't actually exist, just to make himself/herself look good.

OR, you go to a community health clinic because you can no longer afford "regular" doctors any longer.  The staff sees you coming, and a light goes on in their head, "uh oh, another slacker who wants free government money".  A quick look-see, and because you don't resemble any of the creatures in a Sci-Fi movie, they feel you are just fine, so they want you to get your lazy ass out there and look for a job, you bum.

What really pisses me off is that if the situation were different and we were not feeling poorly enough to seek SSDI, but a prospective high profile employer sends us to that SAME doctor for a thorough health screening to get a job that we want, you can bet your sweet patootie that this doctor would report that our strength/grip/gait were weak.  They would note that we get easily winded upon walking.  The good doctor also points out our abnormal ekg's, low iron levels on bloodwork and any swelling indicated in C-Reactive Protein testing.  Any wheezing or murmurs heard through the stethoscope, or a less than stellar pulmonary function and our high blood pressure will be highlighted.  Even the smallest variations in blood sugar would be noted.  If the patient/job applicant shows any signs of depression or anxiety, it will be noted.  The result would most likely be that the applicant would not be hired.

So even if a person did not have as many severe symptoms as many SSDIs applicant may have, they would STILL not be healthy enough to be offered a job, because there is the risk of the applicant calling in sick in the future, getting TOO much use out of the company's health insurance or even the possible future scenario of his/her loved ones making a claim on the company life insurance policy if/when the worker passes away.  So they are too sick to work, but not too sick to be disabled.  Does anyone else see something wrong here?

Just once I would love to go see a doctor and not even report that I am seeking SSDI to see if the outcome on the "notes" were different.  I'm willing to bet the remaining eight dollars in my wallet that it surely would be.

Going to doctor to get properly diagnosed for the SSA

You have worked all your life.  You start feeling ill, you try to self-medicate, you try to be brave and keep on working.  But something in your body is telling you you're not healthy.

You start getting dizzy, you keep falling asleep, you alternate between body pain and numbness.  You start stumbling and falling down.  You finally drive off the road into a ditch.

Get out that book of providers that your employer provides you with.  You are new in town, so you don't know anyone who can recommend a good doctor.  Since you live in the boonies, you pick the doctor out of the book who is closest to where you live.  By now your condition is so bad that you can barely walk, much less drive or work.

Go to the doctor numerous times, pay the co-pays.  Get numerous tests done.  EKG - abnormal.  Blood Pressure - high.  Blood work - some normal, some not.  Asthma attacks, high cholesterol, fibromyalgia, GERD reconfirmed on endoscopy.  Experience the pleasure of having a five foot instrument rammed up your butt after fasting for three days to be told there are some polyps and whatnot and signs of ulcers.  However, the good doctor couldn't get any further up your colon, because even after three days of fasting, there's still some crap up there.

On another visit, have a lie-down nuclear stress test done, because doctor says you can't do the treadmill test, or you will fall down.  During lie-down stress test, have an anaphalyctic reaction that needs to be brought down with shot of benedryl/epinephrine.  Valium is administered to bring down panic shock reaction.  Doctor calls all assistants into room to help out.  Doctor looks worried.  Toilet is brought into room in which you throw up numerous times, pee and crap your brains out.  Lay back down and by now you are freezing, but doctor says that is necessary.  Sleep it off for a few hours while your poor neighbor waits to drive you home.  Doctor's procedure note states that everything went fine.

Cobra insurance runs out.  Money received from generous family members as birthday and christmas gifts as well as tax return money is now spent solely at this doctor's office.  Show up at same doctor on other occasions for asthma attacks, checkups, panic attacks, dizziness that is so bad you are banging into things.  Show up at same doctor being so sleepy you can't stay awake, and collapse on the cot.  Show up with red, infected blood shot eyes caused by severe dry eye.

Be denied by Social Security, because your conditions aren't serious enough to preclude all work.  Although the doctor tells you to your face that you have some problems that need attention, his typed office notes say otherwise.  Although doctor says you can't do treadmill test, according to him you can sit, stand, and walk just fine.  Although you keep dropping the pen and your pocketbook because of the pain and uncoordination in holding things, your fine finger movements are just fine.

You may wonder what kind of idiot would keep going to a doctor who tells them to their face they are not fine, when they say otherwise in their office notes.  Well, the reason is because this idiot, the writer, did not get the office notes until good old Uncle Sam's Social Security Administration turned said idiot down for benefits.

This idiot is now broke, sick, and disgusted with the system.  In the great state of South Carolina, you only get Medicaid if you are already approved for disability or are pregnant.  Time to go hit up the community health clinics, or die.