Talking about Why Fibromyalgia Has a Credibility Problem - MSN Health & Fitness - Fibromyalgia

Why Fibromyalgia Has a Credibility Problem - MSN Health & Fitness - Fibromyalgia

This is a wonderful article and gives those who suffer such as myself and even those who don't a better understanding of the syndrome. There are far too many who dismiss this condition and will just tell you or hint around that it's all in your mind and you're not suffering.  Funny then how for years and years millions of patients had been telling their doctors they suffer from the same problems and this long before it was given a name or studied for symptoms.  

Now it's clear that it's a all too real problem that effects not only woman but men too.  Of course I'm of the old school and know that they never would have started to examine or study these symptoms until men started to feel the same as the woman, had the same complaints.  Doctors, well not all of course that would be stupid to say all Doctors, but most anyway don't take women's complaints as serious as they do men's.  

Even something well known such as heart attacks effect women differently and for years the symptoms were dismissed.  It's only been within the last decade or two that it has been shown that when a woman has a heart attack that truly the symptoms won't be exactly as a mans.  That in of itself was a victory for woman everywhere.  We finally got them to listen to us and do something about it without having a man show the same presentation.

With Fibromyalgia or FM the symptoms are very much the same but it effects more woman then men.  FM studies are still in their infancy. Those of us who have suffered for so long finally have hope that a real cure may be found.  I was diagnosed in 1992 with FM by my primary care manager (Doctor) and referred out to someone in Internal Medicine.  Sadly that doctor didn't believe in FM.  So I've clung to my PCM firmly.  At least there I was believed and given treatments that have gone a long way to helping me on those non flair days.  But most of my days are flair days so I suffer a great deal but always try to put on a smile for those I love. 

Most all sufferers know all too well that FM has destroyed the vast majority of our relationships.  I for example have no local friends only those that I've met online.    My husband of 25 years and my daughter both stand by my side and are very devoted and understanding.  But the rest of my family that I was once close to have now snubbed me.  They think that because I don't spend time with them, go visit them, and be all cheerful that I am a stuck up Bitch. That I only care about myself.  And now that my back has given me so much trouble and I live each day in a brace unable to travel much well that just put the cherry on top for most of them.  As my DH and DD would say about those who feel that way, well that's their loss!

To those who choose to ignore me because they think I am putting myself about you – it’s not true. I try my best to always put the needs of others above my own but then there are times that it’s impossible. I have to think of myself constantly and decide how much I can manage in a day and how it will effect me in the long run.  Please take a moment and read the BlogSpot post called “The Spoon Theory by Christine Miserandino” 

It is my hope that someone will read these and finally gain some understanding of what a person with FM or some other form of Chronic Pain feels and has to go through daily just to live.  It is especially hoped by me that one of my lost family members will understand and realize that I do love them and wish with all my heart that I could see them more often and put them first physically as they are in my heart and mind.

Dealing with Chronic Pain

This letter was written and posted on the internet with no author revealed. I thought for those of us who suffer with chronic pain that I would pass it along for you.

Letter to people without chronic pain:

 Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy." When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, "Oh, you’re sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: "You just need to push yourself more, try harder." Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

Chronic Pain - My Story

Today I was lucky enough to be directed to a group in Facebook that is for/about people who suffer from Chronic Pain.  I have been suffering like that for the past 30 years but these past 10 years things have gotten worse and harder to ignore.  In that group I posted My Story so they would understand where I was coming from.  Since it took so much effort to pull all that together there I just don't have much left to write something else here.  So, here is a brief look into my world.

Repost from Facebook:

My name is Kathy and here is My Story:


Trying to decide just where to start. I have had more aliments than I care to remember really. I still suffer with most or from treatments to rid me of problems. It never amazes me though just how few doctors will listen to you. In a way I've been lucky since I've been seeing military doctors these past 30 years and not that all are bad but most will go along with 80% of what you say is wrong. Amazing! So it seems it's always been up to me to find out what may be my problem and then present it to the doctor - if they feel that I may be right they will order the tests to check for it. I'd say that I'm right more times than I am wrong.

Mind you I've had those doctors you just want to slap! Back in 1993 I starting feeling weak, depressed, with pain everywhere. The slightest touch was excruciating! The base doc said it was Fibromyalgia (amazing that a doctor back then would do that) and he was/is right but he refered me out to a civilian doc who as time progressed and I had new symptoms appear(extreme pain my back and down my legs) just decided that it was all in my head anyway and he ignored me. Then it got where I couldn't pee. I'd sit and sit and just have to wait for it to start on it's own. So to appease me he refereed me out to a neurologist for tests. In the referral which I am positive he didn't intend for me to ever read he said to do this and that test and what ever else was needed to prove to me that nothing was wrong! What an IDIOT! The neuro did the tests and immediately sent me for an MRI, something very new in those days. Within days he called me and had set-up an appointment with a neuro surgeon - a couple of days later I was in the surgeons office - he took one look at the films and within an hour admitted me to the hospital within for surgery scheduled for the next morning! I had a ruptured/herniated disc in my lower back and he was just so amazed that I was even walking - he said it should have paralyzed me! So it just goes to show that if you fee, you know thatl something is wrong, by all means push and push until you get the answers you're looking for.

After the surgery the neuro surgeon expected me to seek a medical retirement since I had the surgery and suffered from FM. Silly me just could't do that then - I pushed myself for many years more until finally I am at the point I am today. Then I would have had the doctors behind me to push to qualify for disability but now that I am disabled I can't find a doctor who is willing to fight for me so I am stuck without any monies of my own and must live off my husbands income. I really hate that!! I feel like a parasite that feeds off him - slowly pushing him into the grave by working him to death. That takes me to an all time low depression which I find very hard to crawl out of. I do my best and often have a couple of days in a row where I feel pretty good, considering everything. But then slip, bam, and I'm back to staying in bed doing nothing as the world passes me by yet once again.

To date my problems are; Gallbladder inflammation which causes extreme pain in my right side to the point I can't breath at times. Severe depression from multiple of factors including stress from 9/11 (I worked with/at the Pentagon). Fibromyalgia(FM) which has so many symptoms I can't go into listing them . I also suffer from Migraines, Chronic Sinusitis, Allergies to dust, mold, pet fur/dandruff, IBS(Irritable bowel syndrome), Hiatial Hernia, GERD(Gastroesophageal reflux disease), POS (Polycystic Ovarian Syndrome)-I've lost 1 ovary from this, Uterine Fibroids-I've lost my uterus from this, degenerative disc disease-3 discs have blown to date - 3 discs removed and they drilled up the center of my lower spine, up from my tailbone to insert a rod, and then placed two rods on either side of my spine and multiple screws to hold those two there. I've had to date 3 surgeries just on my lower back alone. Nerve Damage that causes, Chronic parasthesia(burning sensation), Regional loss of sensitivity, Restless legs syndrome(RLS), Loss of sexual interest/desire(lets just say it's been years!) Plus some meds make me fall asleep for brief periods so I've given up having a car and driving and have to depend on others to bring me everywhere and to do most everything for me. I take about 30 different medications and supplements daily to take the edge off the symptoms and those meds of course have side effects - some of which actually add to the problems or are doing things to me that I have to have my blood tested every 6 months to be sure they haven't caused damage.

Whew... way too much - far too many. If it wasn't for my husband and daughter I would have cashed in my chips long ago. But I love them both too much to do something like that to them. I've lost most every real friend and alienated/disappointed every other family member - no one wants to hear your complaints all the time and eventually they just get fed up and leave your life. Being alone like that does the most damage I think. We're humans, social animals who need the love and companionship of others, we need to be held and loved and cared about. Yes, I have my husband and daughter - but the depression from losing everyone else just adds to the list of problems.

I am glad to those friends I've made online. But they get sick of hearing about it all also and tend to slip away in the dark of night, never to be heard from again. I know even we the suffers get tired of listening, even to ourself... mostly ourselves. We're sick and tired of being sick and tired. I'm sure there is more but one additional problem, I have trouble remembering things.

Bless you all - May your days be brighter and lighter very soon! {soft hugs}