Fibromyalgia and “You look fine”, and why that is a lie


The face of Fibromyalgia

We with FM, often hear this, “you look fine” and what they mean by that, is that you look healthy. Now, I question this whole idea.

I recall seeing one of the first commercials for Fibromyalgia drugs on TV. Where they used a real live family to present it. And the woman was saying, while I may look normal … so on and so on. However, I recall how she looked ! She had to be a real person with FM, as to my eyes, she did not look fine, at all !

I recall seeing her sitting there, with her family all around and I will be blunt and say that she looked like eight miles of bad road. In other words, she looked like one of us. Now since then, I notice that they have stopped doing that. They are all actors now for the commercials, who do look perfectly normal.( No major surprise, since they are healthy people )

I guess they realized that showing what one of us really looks like, was not a good poster child for their newest drugs. But I kept asking myself, are they all blind ? Does no one but me see this woman and see the same suffering individual, as I do ?

I have a mirror and I still have eyes to see with ( even if some days they don’t work very well ) and I can see that I do not look fine, at all. In fact, some days I look like dead warmed over. My skin, my hair, the look in my eyes, the set of my body, how I move, none of it, is “normal” or looks at all fine, by any reasonable definition of the word. Which by the way is a noun, that with regard to ones health means “Being in a state of satisfactory health”

Well, we are most certainly not in a satisfactory state of health, so why does everyone, from our Doctors, to our families try and tell us, that we look fine ? In the case of our doctors, is it just that we do not show the typical signs of “illness” ? What are they anyway ?

Well, unless you are looking for the visible signs of a given disease, don’t bother trying to look them up, as you will not find them as a general item. To find them for FM, the visible signs anyway, I had to look all over the place.

And perhaps that is the problem. That doctors do not yet understand, the “face” of Fibromyalgia. Most of us know it quite well, we see it every time we look in the mirror, every time we look at our skin, nails or hair. In fact, we can just about pinpoint another FMer, just based on how they look or move. But I guess our Doctors are blind to this, at least for now.

Our families can be cut a little slack on this, as these changes did not happen over night. So what they see, has happened as a gradual change in how we look to their eyes, which might appear “normal.” Unless of course they think back to how we looked, before FM hit. Then they might realize, just how much has changed.

For example: When I was younger, I was blessed with a face that made people think I was much younger than I really was. Even at past 40, I had a hard time making people believe it, they had me pegged for my 30’s, at most.

In less than 10 years, that is totally in reverse, I am 56 now and even my doctor made the mistake of thinking I was much older, just based on how I look. I could tell people I was 65 or older, and they would believe me. Hell, I would believe me ! I have two sisters, both older than myself and I look older than both of them. I look, in point of fact, almost as old as my Mother.

Now a bit of that, is the fact that I let my hair go gray ( something neither of my sisters will do, as they dye their hair, like it was a religious obligation ) but I honestly think, that even if I did dye it again, it would make little difference, in how I look. In fact, I think it would be worse. It would be like the 70something year olds you see, with bright dyed hair. It looks a bit silly to me.

But, hair color not withstanding, it is how we all look in general, like men and women who have aged, almost overnight it seems and we always look tired. Well, no surprise there, we usually are !

So what does the “face” of Fibromyalgia, look like ?

Now, just taking the signs that you can see, with your own eyes, or hear as the case maybe, ( which by the way means, so can anyone else hear or see them ) without going into the reasons why we have them, those visible signs, look like so:

 
Rashes, with no identifiable allergen

Hives, for no reason

Red blotches, without having Lupus

Tiny bumps or blisters on the skin

Eczema = a group of medical conditions that cause the skin to become inflamed or irritated

Seborrhoeic dermatitis = an inflammatory skin disorder affecting the scalp, face, and trunk, presents with scaly, flaky, itchy, red skin

Psoriasis = chronic skin condition, causes skin cells to grow too quickly. Symptoms include thick white, silvery, or red patches of skin, inflammation, and flaking skin.

Neurodermatitis = is a skin condition characterized by chronic itching or scaling, the skin can take on a leather like look
Mottled skin: Uneven complexion, gray looking skin, premature wrinkling of the skin

Tissue overgrowth ( ingrown hairs, heavy and splitting cuticles, splits along the edges of the hands, fingers, heels, feet and toes)

Liver spots Although liver spots are generally harmless, there is a danger that they can give rise to melanomas

Keratois = Actinic keratoses are precancerous lesions on the skin, marked by an overgrowth of layers of horny skin. They look like a barnacle, they often itch and will bleed if ripped off, and they are very visible.

Nails that are brittle, ridged, have moons, are thin and often easily broken

Hair often falls out prematurely or sheds excessively

Hair that is either excessively dry or oily

Chronic split ends on the hair

Hair that fails to grow, or grows slowly when cut

Reddening of the eyes

Frequent crusts at the corners of the eyes

Drooping of the eyelids

Fatty deposits on the eyelids

Pale eye lids

Facial tics

Tremor or trembling, especially purpose tremor = meaning when you go to do something, your hand shakes

Chronic Flu like signs, cough, nasal problems, hoarse voice, without having an infection

Staggering gait

Difficultly rising or sitting down

Frequent falls or trips

Slumped posture

Excess belly fat

Bloated abdomen

Aphthous ulcers (canker sores)

Difficulty moving the mouth to speak

Slowed speech

Stuttering; stammering, or slurred speech

Forgotten or confused words

Colorless lips

Shortness of breath

Handwriting difficulties

We drop things, often

Constant shifts in position

Sudden napping

Are easily confused

Abnormal sleeping patterns

Now, there is more, but I think I have made it clear that anyone, from our Doctors on down, who are paying the least bit of attention to what is in front of their face, can see with their own eyes, that NO, we do not look fine… thank you very much !

Now, the reasons for all of the above are many, that are covered in the other articles, (on site link), but I just wanted to take a moment and ask the world in general, how can you NOT see all of this ? How can you look at us and say, we look normal ? That we look fine ? Well if all of the above, is “fine” then I think a goodly portion of the people out there who say such a thing, have a very warped definition of the word.

© 2013 all rights reserved

Known VS Unknown Environments and FM


Why we tend to stay home.  Isolation or control ?
I happened to hear a comment the other night on a movie about a blind man. It was his Mother telling his new girlfriend ” do not base his ability on what you see him do at home, in an environment he controls” And it rattled around in my brain, until I realized, just how that applies to us with FM.

A large number of us, prefer to stay at home … period. To the point where some of us, are downright agoraphobic. The line from the movie was not the first time I had seen this effect, in action. As I recall seeing the same effect, with those I used to teach.

I was a one on one life skills teacher for persons with Disabilities. I noticed, that when they were at home ( once they got used to the apartment ) they seemed to do pretty well. It was when I got them outside of that environment, that their over all state and general performance, suffered. Once they were used to certain stores and the like, their abilities improved, at least in that place. But if I took them somewhere they had never been, again, performance suffered.

So I had to ask myself, in what way does this apply to our tendency to be ” stay at homes” ? Now, it is a given that often times, we just don’t have the energy to face the chores in the outside world, that is nothing more than fact. But how much of our reluctance, is also due to the fact that we have NO control over that environment ?

Sensitives :

For example; If here at home, it is too hot or too cold, I can walk right over to the controls for the AC or heater and change that. I can strip down or dress warmer, in short, I have some direct control. But what if I am out and about ? Now, I am stuck in whatever I happen to be wearing, having to deal with often sudden shifts in temperature ( say from the AC in the car, to out in the heat to now back in the AC in the building ) and that’s just one aspect, the ambient temperature around us.

Light: Now I don’t know about you, but the horror of florescent lighting is enough to drive me about bonkers. Yet, such lighting is in most public buildings, or doctors offices. So yet another thing my body does not like and reacts rather badly to, that I have no control over. Not to mention, we do not do very well in bright sunlight either.

Rest to action phases: Now, at home, if I need to rest, I can just stop whatever it is I am doing on most days and go lay on the sofa and watch TV or read a book. I can even go take a nap if i want. When I am out ? None of those things apply.

Smells: At home, we can to a high degree, control what we smell. Outside and going about, we have little to no control over the major assault on our senses from all manner of things, from the detergent aisle at the grocery store, to the woman sitting next to us on the bus, who bathed in her perfume. Let us not even get into the nasal assault we suffer when walking into any doctors environment.

Noise: Now this one I know for a fact is an issue, as I wear an MP3 player around my neck with ear clamp headphones, literally everywhere I go, to block out the noise all around me. As any failure to do so and I come home even more wiped out, than if i didn’t block it all out. And again, in my own home, most of the time, unless the TV is on, which is rare … the only noise is the AC running, as total quite is preferred. ( Which is why noisy neighbors about drive me crazy )

Desensitization or over excitation:

Now some might say, we are creating our own problem by exercising such strong control over our home environment, as it does not prepare us for the assault on the body in the outside world. And in my personal case, they might even have a point. As in my current situation, I have almost total control over most aspects of my home environment, but what about those of us who have a house full of kids, husbands, wives, pets etc ? Granted, even they have some greater control over their personal space, but not nearly so much as I do … yet… they suffer the same issues as I do, when they go out and about.

So what are we really dealing with here ? A case of, we shelter ourselves and therefore suffer more when we go out, or a case of we would suffer even more, if we did NOT control our personal environment, as then we would have NO respite from it ?

Even in most of the rules, regarding persons with disabilities, there is always a clause stating that they should have in all cases, where possible, the”least restrictive environment .” In fact, in persons with the more common disabilities, there are major protocols in place to reduce the distress of the shift from a controlled to a non controlled environment. A read of the research shows clearly that you can find notations to health professionals, in plenty for just about everybody.. except us. Now, granted, the more severe the disablement, the more complex the protocols, but to my way of thinking, perhaps there needs to be some created for us.

For example: At the doctors office, less bright lights if you please, which makes it a need to….Lose the waiting around for hours in crowded noisy waiting rooms, put us in a private room to wait, with dimmer lights. Let us sit with our feet up if we need to, as for most of us the forced legs down position for hours means, we will fall down when we go to get up.

Simplified forms to fill out or have the nurse just ask the questions and fill it out for us
Bring us warmed blankets, if we have to wait, so we don’t get chilled, as most doctors offices are like refrigerators.

Just these things alone, would make what can be a horror of pain and distress, a typical visit to a doctors office, into something a lot more comfortable to endure. And I think it is high time, we started asking for them.

More soon….

© 2013 all rights reserved

Medicaid is being held hostage, new insurance company


Well , here is some more busy body bureaucratic bullshit, sticking their noses into my business. Just recently I learned that Medicaid is being handled by some new insurance company. I thought, okay, I really don’t care, as long as they do not mess with my care. I spoke too soon.

As if the GI docs, messing up my insides, were not enough. As stands right now, a medication my Doc had a hissy fit over, when I did not get it last time, due to my IBS.. well it’s being held up again, not for lack of a script, as it has refills on it,  but the new insurance company has up and decided, they will not pay for it, as written, unless the Doc explains to them, why I need it twice a day, instead of once. 

Now, I ask you, since she wrote it that way to start with, does that not assume, that is how she wants it ? And up to now, Medicaid has been paying for it. My phamacy guy has faxed over a request, twice and Doc office has not been answering the phone. yet. I’ve been off a medication that already has refills, for a week now and suffering for it. ( I did not realize how well they were working, till they are not there )

Now we have to prove to some faceless bureaucratic board, that I need, what my Doc has already ordered for me ? What a damn chock… on the war path here on this one, this is the frist time and it had better be the last time they interfere, or I will have someones head.

Going to put my War paint on and sic my Doc on them while I am at it.. as she is gonna have a Cow over this one !

Doctors and certitudes about IBS ! Why do doc’s think they know more about us, than we do ?


Getting on my soap box to scream a bit about Doctors. I am sure I am not the only one to notice that Doctors seem to run rough shod over just about anything WE might have to say. Case in point:

Recently saw a mess of GI docs. Told them all about my gut issues and why I think they are happening. Their answer ? To put me on what amounts to 100 times as much psyllium a day as I already take ( never mind I told them that if I do too much of it.. I get cramps, diarrhea etc ) a fact I have learned via nearly 15 years of trial and error. Did the docs listen to this ? Answer.. NO.. and insisted that THEY know best.. 

Ok. fine I take the stuff and the laxative they gave me, the very frist day on it.. ( after I choked it down ) within the hour.. cramps, diarrhea  and pain..it took me over a week to get it to settle down and stop doing that.

However, since I did promise to try, I went back to the meds and cut it down.. long story short here,  and it took two weeks of misery to find out, that in order to prevent the kick off to diarrhea and more pain.. I have had to cut it down less than a 1/10 of what they want me on.  Meaning, about what I expected the stuff to have to be, in order not to kick the other reaction off, based on my personal experiences..

Mind you, I am not just cutting it down, just to prove I am right. I did it their way, they said I could adjust it if it gave me problems, and I have, as I had to. The gut is still not good, but at least not MUCH worse than normal.

Now, several things are in play here with all this. The first being their arrogance in assuming THEY and only they, know best. Well its “worked for a lot of people” just try it they say. The pills you take everyday of the same stuff, won’t work they say, as you cannot just take them and sip a little water… never mind I have always taken them as they are supposed to be, which is with plenty of water, they ASSUME  that I am like so many others who take the pills, and do not do it right. Again, did they ask me how I take them ? Answer, NO. I all but bit the docs head off for that one.

That is just more of the all too common arrogance in assuming that I.. know nothing.  Their assumption of the dosage of the stuff they gave me, is based on three meals a day + snacks. I do lucky to eat, once. twice a day, tops. I told them this, did they listen ? No. 

What makes it worst of all is.. for weeks of extra bloating, pain, cramps etc. there is NO improvment in how the gut works or the problems that drove me to seek help in the first place. Just a lot more suffering.

I told them then and will tell them again, it’s not about consistency, it’s about function. As what I went in for, is to my mind, mechanical, the gut simply cannot do the squeeze and peristalsis motion….and a fast look around with a scope, would prove it.

They keep showing me the damn xrays.. tell me that they “look” normal, since they are not seeing any gross pinches of the gut or deformities. Never mind the ones who DID the test told me the gut was “twisted like a corkscrew” but apparently that notation, did not make it to the report.

Again I tell them.. that just shows you the inside of the gut, not the outside.. which by the way.. in my opinion. is the problem and told them exactly why. ( mind you I have been through this once before with adhesion’s etc gumming up the works.. and will bet with 95% certainly. that is the case .. now ) A good 14lbs of them were removed from my gut some 20 years ago, after my ovaries had bled necrotic matter into the gut cavity for years, and the body of course, tries to encapsulate it. Note: after all that was removed, the gut worked just fine.

Now, move forward 10 years after all that was removed, and the gall badder went totally south, to the point of being black, dead and gangrenous. Which would have, of course, pumped all manner of dead and dangerous stuff into the area around the gut, I nearly died over it all, .. notice this is again the same issue that created adhesion’s the first time…. just the source changed. Again, I told them all of this.

Now, since that time. the gut has not worked right, and it’s getting worse, but it looks like I will have to beat them all over the head with my cane, to get them to do the obvious, which is take a look.

If they can prove to me, that is NOT the case, that nothing is binding the gut in anyway, then fine, I am wrong and we have to look at other options ( I have news for them, IF that is the case, if they think I will take the crap they gave every morning of my life, they got another think coming ) but at that point, I will look at other options.. 

But I do not think I am wrong and I am not going to shut up.. until and unless, they prove it to me.. I know my body, I know its history, I know how it works and moreover does not work. I have treated myself for years and have found ways that let me at least have something like a balance with the beast.. and damn them, they ARE going to listen if I have to scream ! 

getting off my soap box now

BB

Esta

Update to this: I lost over 25 lbs over this and they were appalled…. and FINALLY listened to me and a few bright ones in the group, who had not been in on the original request, flat out told the ones who did order this fiasco… that they were fools to have ordered such things for someone with IBS ( nice to know not all of them are nit wits ) and they agreed with me, that adhesion’s were likely the cause here, but… they don’t do surgery anymore to remove them, unless they are cutting off the gut. So all of this, was for nothing………..sigh

New medications, the trials and tribulations and FM


Goddess help me. I HATE trying new meds. I look at them with all the trepidation of a ticking bomb.  ENT give me no less than three of em. Now I have the good sense not to start all three at once.. the first one wasn’t so bad.. minor body rush for a few moments…. a wee bit of tired ( it’s supposed to be taken at night, so no harm there ) and it does seem to help a bit for what its for. Ok. so far so good, kept that up a few days.. same results.  Medication accepted.

So today I try med number two…… and ugh… Ever try those really rough OTC anit histamines ? The ones that make you shake like a tree in the wind ? The ones that just wipe your brain ?

This one is just like that times 3-4. and so far.. it has almost every so called “Minor” side effect the thing says it might have, and a few not ON the list to boot.. at this rate, I might even be allergic to it.. but not sure on that yet.. all I know is I feel crappy. Monitoring the reactions and will take whatever steps needed. But off hand I would say this one is a NOT !

It makes me doubly suspicious, to even look at number three that I have yet to try and what’s funny.. this one that I just did a while ago..was NOT the one my pharmacy had doubts about. Let’s just say it makes me real leery about the one he DID have doubts about to where I might not even try it… at all. And have him tell my doctor that nix on both the sprays.

And whats worse, Doctors, over all anyway, do not seem to understand this hesitance to try new stuff. They act like any side effects are just something to be endured.

Well news, when you have Fibromyalgia and a half a dozen other aliments, that already make you feel like crap.. you do not feel that adding further discomforts.. for perhaps little gain, is bloody worth it.

As the effects are additive. This one might cause headache, thanks.. I already have them quite enough as it is.. without courting more. This one says do not take pain meds with it.. it’s called HELLO.. your telling me I have to choose between a stuffy nose or be in pain for the day ? Pain that the medication itself… is causing ?

This one causes diarrhea….it’s called again, thanks a heap. I already have that problem and I do not need it aggravated. This one says will be worse with muscle relaxants.. which I take daily. Are you seeing the trend here ?  

Do Docs even read or understand the possible effects of the meds they hand out ? Or do they just see how it might help the one thing they are focused on ?

Whatever happened to holistic healing ? As in take all factors into account and deal with the entire person and the side effects to benefits ratio of all of your medications.. combined ?

I am willing to bet they don’t stop to think about that very much. But WE have to, as we are the ones taking everything, combined and their combined effects are what matter here.

Sigh.. hoping that perhaps this one won’t send me to ER AGAIN ! But am holding out judgement on that, until I feel normal again.

When will Health personal get it.. that you have to take all effects into account for the over all well being of the client ? 

Think a few good thoughts for me that these effects go away in a little while with nothing more to show for it, than a crappy day, which I have NO intention of repeating.

BB

Esta

 

Anyone have a brain to spare ? FMS


It seems that I am no more than dragging my body outta the black hole its been in for mts, and now my brain wants to stay on vacation. Trying desperately to complete some work I have been chipping away at, as I can, for way longer than it normally takes me ( the client has been very forgiving ) and I cannot seem to get my brain to work. I had thought, ok the body is getting back with the program since the weather is not so hideous, so lets knock it out and have done. right ? Wrong.

For the first time, in a long time, this is actually frustrating.  Now some of it, is my own fault, in that I let how tedious this particular job is.. make me find reasons to put it off, now I am facing a deadline, one that I set, as it must get done, and it’s like half the information.. you know the stuff ya thought ya had all lined up and ready to go.. isn’t. I am shocked at myself as this is not like me.. hell putting off work is not like me either but I managed to do it.. for longer than even I realized.

I am wondering if perhaps some of my new medications, are behind this and if so, how do I counter it ? As one must work, and I am at risk of losing my reputation here. I think its time to do some more research on the meds I started oh about 6 mts ago.. as if they are it.. then out they go.. I do not care how much good they are doing the body.. taking my mind for such details, is not acceptable..If its not them, then I need another plan here.

Getting off my soap box.. thanks for letting me rant

Well, finally got my medications. Medical frustrations and FMS


If you recall the meds I have been screaming about in prior posts .. well. finally, after literaly weeks of phone calls and personal harranges, I got them.

Now mind you, this was only after being so sharp with the staff, that one of them, hung up on me..  But she did do as she was told, which was trot her happy butt down to Medical records and demand some answers.

Seems they sent them off yesterday to my pharmacy. Now what is interesting about that, is the last information anyone was given by them, was .. send the faxes again .. no information from them to indicate they even had the the faxes ( twice over ) no one  even offered a guess at completion date, no notice in fact whatsoever, of what they were even doing or not doing about it.

As today, my ablity to tolerate this went through the floor and I was two cents over the line of even caring about being polite. As when I called on this for the umpteenth time, yet again the staff at my doctors office, were just reading off whats on the screen under my name in their office. Which of course, didnt say a dang thing about the medications, and has not, since the papers were first sent to them.

At no time has Medical records put in one word to the data base, or told anyone what they were up to and likely I am willing to bet, will not even record having sent them off for a week or more, as they seem to be as backward about data entry, as they are at handling the paperwork. Yet this data, is what my doctors staff, depends on.

Now, agreed, the staff should be able to depend on it, however, they cannot and NONE of them it seemed, were able to even understand the problem ! It is like, if it’s not in the computer, it doesn’t exist ?

I am suspicious that a good part of the problem, is due to the fact that most of the staff, has difficulty understanding English, and I do not mean that as an insult, I mean that literally.

As most of them, other than the Doctor herself, their accents are so thick, you can barely understand them when they speak. And it has been my personal experience that anyone who care barely speak the language, generally has trouble understanding it as well.

So what that has created is two fold, as the staff does know their jobs, however if presented with anything NOT on the screen, it seems they are lost, and furthermore, explain how you may, they just do NOT get it.

It was as plain as the nose on one’s face, that they just did not understand what I was saying to them and planned to do nothing about it but give me platitudes. Until I got downright rude about it !

This is not the first time that Medical records has done a major dance with paperwork of mine but it damn well had better be the last, or someone’s head, is gonna roll, as I have had it with them. Not just for myself alone, but for others as well. 

As it happens, the medications that needed some extra steps on their part, where not critical, in  that yes I could do without them for a few weeks. But what if I could not ? What if I were as my mate is and I was a Diabetic ? Or I had heart problems and NEEDED the medications, just to stay alive ?

As I firmly believe that it would make no difference to the paper pushers, at all. Anymore than they did for the paperwork for my bath chair and walking aid, the lack of either of which could have caused me great bodily harm if not death. They did not care.

I was at least, able to assure my pharmacist today as I have throughout all of this , that he was doing HIS job very well, as the man bent over backward to try and get this issue resolved for me.

He was very appreciative of the fact that I gave him a heads up, kept him in the loop at all times and that I assured him. that it was by no means his fault and I thanked him very much for his extraordinary efforts on my behalf. But he should not have had to make them.

Well, enough is enough, as I will find out who is in charge over Medical records ( as talking to them.. is pointless ) So far, no one wants to say who is really in charge of it, but I know where to find out. I plan to file formal complaints and if possible, charges against them for their negligence.

And no, I do not care at this point, if someone loses their job over it, in my view, given how poorly they are doing it, they should be booted right out the door, as they risk other peoples lives here and that cannot be condoned. If no one else will raise enough fuss to see it changed… I will !

Off to plan someone’s ultimate nightmare…