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.
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}
Good Morning friends and friends yet to be. I am a 49 yr old w/w and I've been married nearly 25 yrs. Aug 30th will mark the day my husband JP and I made our vows to one another. In all those years our lives have changed drasticly - up's and down's from rags to riches and back to rags again. All in all some things have remained steady. We've stayed the same people we always were. We love our families and friends and there isn't a thing we wouldn't do for any of them if it is in our power.
Starting out young and fairly poor we worked and worked, saved and tried our best to provide a good life for our daughter and for ourselves. We also helped my late Mother have more than she would have had alone. This caused some problems along the way with others although that was the very last thing we ever wanted to do. JP's family understands and holds no ill will towards us. They are like we are - happy for anyone and everyone who can get one step further ahead in their lives. Never ones to be jelious or mean to anyone. Even those who have hated us and caused us pain we still to this day don't wish anything ill. I always told my daughter something as she was growning up, "There are times I'm not going to like you very much but I will always love you!". You know those times when a child or adult for that matter has you down to that last thread (straw). Those are the times you're just not going to like that person much. But if I love you, I will always love you, no matter what! If you need me I am there. Just let me know what I can do and I will do all that I can to help you get it.
I will always love my family but there are times I really don't like them much. Those days when they have hurt me more than a body can stand... I may not like them, but I will always love them. Time is the key to change opnions but nothing can change love! Not real love. Real love can only grow - it will never die away.
As I mentioned at the start of my blog, I suffer from FMS and many other ailments. FMS is the abrvation for Fibromyalgia Syndrom. I also suffer from depression, Polycystic Ovary Syndrome (PCOS) for which I've had 1 major surgery for, Degenerative Disc Disease (DDD) and have had 3 major surgeries for that, Carpal Tunnel Syndrome in both my wrists but mainly in my left. I also have problems with Insomnia which is associated with my FMS. FMS has also caused me to suffer from horrible headaches, memory loss, and the inablity to live a normal life. As if having 3 rods and several screws in my lower back weren't enough to keep me bedridden. All these things certainly make living life hard not only on me but on my family. Many can't or won't understand why I don't travel 16 hrs to visit more often or why I can't remember some things until it's far too late to do anything about it.
I once was the one who remembered every one's birthday, anniversary, and many other details. Now I'm lucky I remember what day of the week it is and some times I have actually forgotten what month it is! It's getting worse too. I can only hope it's temporary and that my mind will learn to function better once again. I've already asked my husband that if things turn into Alzheimer's Disease that I wish to be put away when things get difficult. I don't want to make him or anyone else suffer because of my problems. It's bad enough now that I can't work and can't seem to get a doctor that's willing to go the extra steps to get me on disability. Poor JP works 6 days a week sometimes 10 hours a day too boot. Just to support us. I thank the powers that be for JP having stuck it out in the USMC for 20 years so as to get his retirement. Our health insurance is very affordable. Free if we wish only to be treated on base but with all of my problems we have TriCare Health Insurance. It's a blessing and a half! Most of our medications are free and those that aren't carried on base only cost us $3 a month each.
Examples of how TriCare has helped. One of the past back surgeries, I can't remember them all. But one of them I remember that it was over $123,000! We only paid the daily rate for our cost share - I think it's like $12 a day. You can't beat that!! I was in the hospital for a week and we spent somewhere in the area of $65 for the stay, medications, labs and surgery!!
I am still on so much Morphine that I can't function fully. I can't well don't dare drive an auto. We had just traded in our Jeep Wrangler for a Dodge Avenger so that I could get in and out of the auto to go to doctors and such and then as things lingered the new dodge sat there gathering dust and costing far too much to justify it sitting there. Lucky for all involved our daughter needed a new car. So as it worked out she has taken over the payments from us. We kept the same bank loan in our name, but she makes the payments and when it's paid off we'll sign it over to her. That way since we'd already been paying on it for a couple of years no one really loses out. Well I guess we lose the money we paid in but it saved us from selling it back to the dealer for pennies. We would much rather have Kim make out on the deal than the dealer or banker!
This has taken me ages to write out. Spell check is a God send! Mind you I don't know if it all makes sense but I do know it's spelt correctly! LOL
I hope all of this not only helps others but myself also. If I forget at least I know there is one place I can find bits of my life written out. There will be more to come. I will try each morning to sit here and write about my prior day. Giving links when I talk about something specific to help us all.
