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Saturday, October 24th, 2009

Why Fibromyalgia Patient’s Life Is More Difficult?

For fibromyalgia patients their symptoms often begin as vague nagging aches and pains that affect their whole body and will just not go away. Because of the mass of myths and misinformation that surround fibromyalgia life can become almost unbearable for sufferers in a myriad of ways. They are tired all the time and however much they sleep they find it hard to summon the energy to make it through the most routine of days. Their doctors may conduct test after test and tell the patients that each is negative and that there seems to be nothing wrong with them.

Often fibromyalgia sufferers find themselves labeled by friends, co workers and even family members as hypochondriacs, whose aches and pains are all in their head. They may even receive that reaction from a medical professional who is not familiar with the concept of the condition, making life all the more difficult for the fibromyalgia patient.

The medical fact is that Fibromyalgia is a specific diagnosis based on symptoms, not as some believe merely a label that doctors impose upon patients when they cannot figure out what is really wrong with them. It is not a life threatening condition, but the pain and misery it causes is just as real as any other health problem and deserves to be taken as seriously.

There is no known specific cause for the onset of fibromyalgia and no known “cure”. Some have suggested that genetics may be play a part in the disease and there has been some evidence that fibromyalgia can be triggered by a single physical or emotional trauma and in some cases an infection that had otherwise been cured.

The most current medical thinking rationalizes that the brains of fibromyalgia sufferers have a lower threshold for pain than others that is organic.

So far in the USA the FDA has approved just one drug to be specifically labeled as for use in treating fibromyalgia and the results of its use vary from patient to patient. The drug has been linked with various side effects including increased depression and suicidal thoughts, especially in younger patients, so its use is carefully monitored.

With a lack of drug therapy doctors and their patients often turn to alternative medicine techniques to relieve fibromyalgia symptoms. Many sufferers are report feeling great relief from regular acupuncture sessions and others experience symptom decreases after massage therapy.

One thing that most medical professionals agree upon is that a healthy diet and a regular exercise program are both beneficial to fibromyalgia patients. When it comes to physical activity however patients are cautioned not to overdo things on “good days”, as that can only make the “bad days” far worse. Maintaining a reasonable daily schedule that is neither too light nor too heavy is the recommended course of action.

28 Responses to “Why Fibromyalgia Patient’s Life Is More Difficult?”

Sam Stevens Says:

Fibromyalgia is a condition related to an inability to get pass Stage 2 sleep. The term used is “alpha interference in delta sleep,” refering to the pattern of brain waves commonly associated with the sleep of fibromyalgia patients. Though many healthy adults only spend 15-20 minutes in deep sleep, several crucial chemicals are produced only during those 15-20 minutes. The one approved drug is actually rohypnol – the date rape drug, because it can force someone into deep sleep. As scientists begin to more fully understand the physiology of deep sleep, more treatments will become available.

Linda Placzkowski Says:

I have had fibromyalgia for five years. something that has impoved my life is fibroactive. It is a combination of magnesium , malic acid and vitamin b for muscle. It cut my symptoms down about 60 per cent and is all natural. Being in the medical field I found out magnesium levels get low.

It can be ordered online. It helped me alot.

Thanks
Linda

Patricia Says:

I am 72 and have suffered from fibro for more than 50 yrs. I long ago learned how to live with it—-what choice did I have? I had a career and raised a family. For the most part I didn’t tell people about it, because no one had ever heard of it. Finally, when I was 50, a doctor put a name to it. But still, nothing relieved the pain, so I continued to live as I always had–doing what I could as well as I could. Then, a month ago,my massage therapist suggested a supplement from the health food store, to treat an unrelated muscle problem I was having. It’s called D-Ribose, and it’s an organic compound with no apparent side effects. I tried it, for my unrelated muscle problems, and then I experienced a miracle! My fibro pain is greatly reduced! It’s not 100% gone, but about 75%. I am less depressed, and I sleep very soundly. Since then I have done online research and learned that some doctors are recommending it to fibro patients. I am not a doctor so cannot speak as an expert, but after a half century of fibro, I’m quite familiar with it and its various symptoms. I don’t know if it will help others, but for me, this is a miracle drug!

Marie L Says:

There are two drugs usually prescribed for Fibro although one is actually also a seizure med. Both Lyrica and now one exclusively for Fibro, which is Sevella. Last week my Neurologist put me on a trial pack of Savella. I took it for only 3 days and took the lowest dose. I had some relief even with the first dose, but I also experienced many side effects so I quit after 3 days when the dose went up as the side effects were worse. I also had relief with the lowest dose (12.5 mg) and none when it went up (25 mg.) I have gotten relief from Lyrica and it helps. If you suffer from Fibromyalgia, you know all too well that this article is 100% right. I’ve been practically house-bound with severe Fibromyalgia for ten years. I’ve also had several “slams” to my nervous system, which is belived to cause Fibro: a divorce that I still regret 22 years later, my ex – husband almost died in a car wreck, a house fire that claimed all we owned and almost my daughter as well, and the list goes on. I believe that Fibro could indeed be caused by tramatic life events. For others who suffer from this life-robbing disease, my heart and prayers are surely with you. It’s a very cruel disease. (For doubters, the CDC proclaimed Fibromyalgia to be a real disease several years ago.) Avoiding stress and light walking daily are two of the best things you can do for yourself along with trying to get into a swimming pool at least once a week even if you have to get to the local YMCA like I do to do it. Even just moving in water, for me and several friends, has brought the most relief along with as hard as it is these days, avoiding stress. Take good care of you!

Jean langford Says:

Fibromyalgia is a very painful thing to have. I disagree with the medical doctors on a lot of things. I have had fibromyalgia for several years now. I could stand to walk through fire and on ice. The pain levels I have had to go through all my life have had a high threshold for pain. Fibromyalgia grips the muscles and connective tissues with a pain that is unbearable at times.I have shooting cramping/pierceing pains in my feet and hands;and other parts at times. It leaves the muscles sore, like you have been beat with a stick. At times I have to cry.(which I try to hide) I was taught and learned not to show my pain when I am hurting. It hurts so bad a person just has to try to block the pain in the mind.I have to improvise in everything i do which isn’t much;cause my pain;like now kills me. I have tried several medicines and acupunture which was painful along with electric shock to those needles. It hurt really bad but loosed up my shoulder some. Too bad the acupunturest are stuck miles away too far to go for treatments; and since it doesn’t cure the problem might harm in the end…do not send mail or doctors to my door. This was caused by silicone leakage into my body. I know for a fact.

Brenda Homburg Says:

Probably the most frustrating thing I have experienced with fibromyalgia is the fact that I don’t “appear sick”…and I’m not taken seriously by many friends, including my husband, when I tell them I don’t feel good and just need to sleep. I just retired and am thankful that I no longer have to worry about missing work because I don’t have enough energy to get through the nights at work. Also finding a doctor who takes my problems seriously is another problem.

Jan Says:

So far, the pain is not unbearable so I am trying to stay away from pain medication for fear of becoming addicted. What bothers me the most is the horrific fatique. I would give anything to have more energy. My husband and whole family think I am just being lazy. My husband thinks I can just get up and get moving and I’ll be better. When I do ANYTHING even slightly strenuous, I am so sore the next day that I can barely get out of bed. I am not suicidal but if I had an accident or serious illness I would ask not to be resucitated. Living like this makes you feel utterly useless.

Douglas PANNEBAKER Says:

I have been living with this condition now for over 24 years. I am now 50. Yes, the pain is very intense. However I must say that in my behalf, my pain tolerance is extremely high. This is known by being put through a pain tolerance test.
Since I have other issues, thanks to Capt Landis US Navy physician. My case of extreme near death caused by him was his ignorance and the Navy’s hate of US Marines. He misdiagnosed me. His thought process was that I was a Marine and wanted out. How wrong he was and now my life is ruined. I was later diagnosed with a Hyperparathyroid. Serum Ca., level at first test was >13.1 2nd an hour later >13.2 time of operation was >14.2 Being a 22 year old male US Marine, in great physical and mental health, I suffered a heart attack, loss of bone mass a ton of arthritis, bursitis, etc.
No one in my family has or had either disease. Surviving the parathyroid issues they say is amazing at least, but I suffer with so much and the VA and of course the Navy at that time could care less.

Lorna Says:

I was wondering whether there has been any research on women who had an epidural during child birth and Fibromyalgia?

Mrs. Smitty Says:

And then there’s the guilt. Guilt at not being able to do what you used to do, what you ought to do, and what other people think you’re too lazy to do. Ordinary day-to-day things like physical work.

That nagging little voice in the back of your mind says you really could do more, but you’re really lazy, or just a drama queen or jonesing for attention.

AnnaMaria Says:

To Lorna: As an RN (who also has fibromyalgia) please do not think that the labor epidural is connected to fibromyalgia. It is more likely that the childbirth experience could be associated with your onset of symptoms. I have two children and fibromyalgia, and NEVER had an epidural. If anything, an epidural should help with pain and not cause the condition.

To Brenda Homburg – it is so frustrating that people do not take a fibromyalgic’s condition seriously just because they “appear” okay. Many times, those closest to you are the hardest to deal with. I can so relate with you! Best wishes to you.

carol Says:

I am 50 and have had fibromyalgia for almost 25 years and I was very lucky the doctor that I had at the time had wrote 2 books on it, also he had other doctors come to his office to show them about pressure points, and something he would do was show them that alot of people with this there skin wouldn’t move on there backs like others would. He told me I would have to learn how to deal with it because I would have it for the rest of my life. I was in a car accident he told me trauma will bring it out, we could carry all of our lives but something severe would start it. I stopped telling people how I feel, because its the same every day.

Holly Says:

Wow, I could have written everyone of these statements.
Not being able to do things I use to do or doing them and not
being able to get out of bed for days because I am so sore from doing them. If I was in a serious accident as one of the statements said, I would ask not to be resuscitated as the pain from RA and Fibromyalgia is unbearable and the feeling of uselessness is overwhelming.
I see the look in my families eyes when I say I don’t feel well enough to do something they want and you can’t miss the annoyance in their faces and you can tell they just don’t really care because they think we look ok so just snap out of it – right??? What do we do?
Pray ~ Thank God for my Faith.

Nancy Says:

I have had fibro for about 20 years and have recently found a good rheumatologist. I was put on Lyrica and I did receive some relief but was unable to take until bedtime as daily doses affected my ability to work. I spoke to my MD and asked about guanfenesin therapy and after completing some bloodwork for him, I am going to start the therapy. I am pretty desperate. I cannot retire on a disability pension unless I qualify for SS Disability which is very hard to get so I will need to keep working for the next 5 years. Don’t know if I can make it. Hopefully this guanfenisen therapy will help.

Ranell Says:

After reading all the comments, I just want to say I wish you all well. I haven’t been formally diagnosed with fibro, why do doctors ignore the symptoms? I’ve had them for years and they just keep giving me pain pills. They don’t work anymore period. I float in the pool a lot and listen to music to take my mind somewhere else. the pools does help. This too gets exhausting, talking my mind somewhere else to ease the pain. I feel for my children , they didn’t ask for this. I literally crawl to get them where they need to go and that is no lie. Thanks for letting me vent. Good luck to everyone afflicted with this condition. Love and peace be with you.

RuthanneRohn Says:

Lorna,
YES I had an epideral during childbirth.
my boy was smaller 8lb. than my 1st (girl 9lb &?oz. 22.5inches)& everything was fine EXCEPT I think the anasticialigist SP? hit something my spaces on my spianl column were tight AND i had a horrific pain in one leg forever! 13yrs. so far.
My second boy came too fast, 10lbs.shoulders stuck on way out.
My 3rd & last boy i had an epideral maybe not soon enough…PAIN 10lb11oz 23inches shoulder stuck on the way out.
Love N Prayers

julialynn Says:

I was diagnosed with fibromyalgia about 4 years ago. It is an official diagnosis with a specific method of performing an examination of tender points in the body. Mine began after an emotionally traumatic event, but when I look back I can see bits and pieces of the syndrome years before that. My psychiatrist has prescribed Cymbalta, a medication used for depression and fibromyalgia. It works by effecting a change on the overactive nervous system that causes the pain– and who isn’t depressed when they’re in chronic pain?

I’ve taken classes to learn to deal with chronic pain, and the Cymbalta works quite well to lessen the pain, I would certainly recommend both! The pain class taught me ways to deal with the pain in a less depressed way, plus gentle exercises for mobility and strength, and techniques to learn to “pace”–working ahead to keep from overdoing.

There are a variety of theories out there regarding the base cause to be treated for FM revolving around retraining of certain parts of the brain that affect the overly sensitive nervous system. I’m going to keep looking for ways to help myself–

Different people have different “triggers” for the bad days, we have to keep trying to figure out our own so we can manage it. Some seem to be related to food or chemical sensitivities and my pain is set off by stress, among other things.

Please don’t give up, everybody–there are lots of internet sources for ways to track your pain and find your triggers and manage your pain and fatigue. I’ve found quite a few helpful things on the Prohealth site of those tools, plus they tell the current research being done for FM as well as ME (used to be called chronic fatigue, right?)

I’ve been pretty fortunate to live where there are many doctors familiar with fibromyalgia and have been able to get some good help and medication. But to keep getting through each day that can seem so unending due to the pain and fatigue, we have to be our own advocate and keep searching for help. It can take some time, but once you find a few things that work for you, your quality of life can get so much better.

Prayers for all of you–

Grace Cruz Says:

I just do not know where to start. I have a severe case of Fibromyalgia since 1986. I am sixty-four and am, still suffering 24/7 every single day of my life. Like one, lady said you do not look like you are ill. That’s when I wish I could give my pain to them, for only one hour. No one relizes what you are going through. I have a terrible burning pain in my whole body, there were times I could have taken all my sleeping pills, one night and close my eyes forever. I could not do that
to my family. I have seen at least fifty doctors and I have been hospitalized over forty times. I am taking fifteen medications everyday. Being this ill, and trying to survive on a very low income does not help my condition. My husband has been disabled since 1994. Without us not working it has been hell. What effects me is the pain in my head,neck,shoulders,Back and feet and hands also my hips. In the year 2000 my pancreas became so bad the I was vomiting almost every day.I could hardly walk the pain had me in the fetal position that is how bad the pain was. I had two surgeries on my Pancreas. My husband would take me to the ER every night for a pain shot because the pain was unbearible. now I have a morphine pump. The pump does not help the pain from the fibromyalgia at all. There is no word in the dictionary that can explain, what I am I going through.

Marie L Says:

I am in tears reading these posts. I see myself in all of your posts, and my heart is breaking reading them. They are all so ‘me’ as well. The one that is closest at this point for me is Jan’s where she wrote how Fibromyalgia “makes you feel so utterly useless”. That’s exactly how I feel, plus frustrated because the pain is so high tonight. The ‘pity parties’ come for us all I guess, and we feel we must fight them. We live in a 3 bedroom condo-type apartment and there are 6 of us here: my husband and I, 3 of our children: ages 11b, 16g, & 19g/teen mother, and her son: our 18 mo old grandson.(Grammie’s love!!) My girls want to be teenagers (I’m raising my grandson while my daughter “runs” with friends, sleeps in, etc.) and go out with friends, yak on the phone, and the usual “I don’t wanna do chores”. Problem is in my house, chores mean ALL of the housework as the constant NEVER ending severe pain keeps me trapped in this chair. My daughters are old enough to understand, yet they do very, very little. My husband cooks and does dishes after driving a semi all day. The girls occasionally pick up around here and my 11 yr. old son has chores – but NONE will do enough to keep me from wanting to crawl under my computer desk when anyone comes to our home. I can’t afford a maid service, I looked into it. I am on SS Disability, my husband works, but my meds are expensive even with our Insurance. I need dental work and eyeglasses but I can’t get myself out of the house. The pain is unreal and really BAD even trying to walk across the room. Some days I can’t get upstairs at all so days go by without showering. Fibromyalgia, to me, in 3 words – robber of life. All of you are surely in my prayers.

Marie L Says:

Sam Stevens — I have the total opposite problem. Once I get to sleep, I am sleeping SO deeply that my daughter will let my 18 month old grandson climb all over me to wake me and once I do wake up, I never knew he was on me. My children say that they shake me, shove me, scream and yell, and IF I budge, it’s to tell them to hush and I am out again. Now that could be one of my medications, but it sort of scares me that a 20+ pound child can actually sit on my head – NO LIE! – and I do not budge. Where did you find that info? That’s one that I haven’t seen on the Internet or anywhere yet. Thanks so much for the info though!

Marre Carpenter Says:

I have Lyme disease and with it comes the pinpoint areas of Fibro. I am in constant pain, especially in hips, legs, (big toes for some reason)and arms tire unusually easy. Its been 20 yrs since my lyme diagnosis and many more bites, yet that epidural connection has me wondering also. I did have a fibroid tumor/cyst removed from left of spine (almost on it)which left scar tissue everywhere, a pinched nerve they found that has never been fixed, and a whole lot of falls from my legs/knees giving way from under me. They gave me disability for somataform disorder/syncope, but judge wrote a little excerpt in last paragraph that she wasnt going by what the state docs tried to pull, (I had too much evidence in my behalf), and now I took pics and had them remove the darned tick off my hip WITH the darn bullseye around it this time at their darn clinic in April! Fixed their butts, all in my head fools! I really believe there are many things that cause this Fibro, and I hope others find their own reasons and cure soon. God Bless you All!

Marre Carpenter Says:

P.S. Does anyone also have dyslexia of words AND numbers with theirs. This is neuro lyme….3rd stage, then you know its untreated lyme for sure or its co-infections……

SUE Says:

I’VE HAD FIBRO FOR OVER 30 YEARS NOW,EXTREME SEVERE PAIN, I RECENTY WAS GIVEN A PAIN PATCH,”FENTANYL” 50 MG..AND PILLS ROXIXCOTIN 30 6 TIMES A DAY WITH LYRICA AND ITS HELPED ABOUT 40% IVE TRIED EVERYTHING. AND ALSO NOW HAVE 4 TYPES OF ARTHRITIS AND NEUROPATHY.UPPER & LOWER EXTREMITIES..FINALLY GOT SSD, AFTER FIGHTING FOR YEARS & A LAWYER, I’M 55 AND A WIDOW. AND LIVE ALONE..STRUGGLE DAILY.
THE PATCH IS PROBABLY THE BEST HELPFUL PAIN THING I HAVE HAD.AND I USE A JACUZZZI 105 DEGREE’S DAILY 3 X DAY OR MORE..FOR SOME RELIEF.& NEVER SLEEP…I WAS IN SEVERAL ACCIDENTS, AND ALSO LIVED A VERY EXTREMELY STRESSFUL LIFE..WHEN MY HUSBAND WAS ALIVE , HE WAS DISABLED SINCE I WAS 24 YRS OLD WITH WAR PTSD. SO IT TOOK ITS TOLL..I AM EXTREMELY ALLERGIC TO MOST MEDS AND TRIED EVERYTHING AVAILABLE…TO NO AVAIL..
SO WHAT I’M DOING NOW IS BETTER THEN ANYTHING OVER THE YEARS.
I AM CONFINED TO MY HOME, 99% OF THE TIME..WALKING, REALLY DOES ME IN PAIN WISE..OR ANY TYPE OF EXERSISE..ITS LIKE THE OPPOSITE OF WHAT THEY SAY..ALSO COLD..BOTHERS ME..HOT WEATHER IS BEST ,,IF I HAVE 3 DAYS A MONTH “GOOD” I AM LUCKY.
I AM ALSO ALLERGIC TO B12 SHOTS, AND VITAMINS , ITS VERY WEIRD…THEY MAKE ME ALMOST COMATOSE..FOR DAYS…STRANGE.
IF ANYONE WANTS TO TALK..YOU CAN EMAIL ME..THANKS,SUE

KISSEMEDOTCOM@AOL.COM

Henriette Says:

I’ve had Fibro for 15 years. Was treated for Chronic Fatigue (which are the same symptoms, and one of the same)My symptoms were getting worse with every stressful situation I encountered.Pain, Pain and more Pain. I have been seeing a wonderful Dr. in the LA area, who has devoted the last 45 years of his life in finding the reason, treatment and long term remission of this horrible disease (there is no cure). His book is WHAT YOUR DR. MAY NOT TELL YOU ABOUT FIBROMYALGIA, WRITTEN BY DR. PAUL ST AMAND AND CLAUDIA CRAIG MAREK. GOOD LUCK

GRACE Says:

WHAT TESTS ARE USED BY A DOCTOR TO DETERMINE YOU HAVE FIBRO?

ronnie Says:

I feel better just listening to people who are in the same boat. I am 52. I had a wreck about 5 years ago and my life changed. I am fatigued and constantly battling for sleep. Iam on sleeping medicine, Nuerotin, Cymbalta, Percocet 10 mg. Lunesta. I feel like dying, my doctor knows I hurt but he don’t no how much. My feet hurt me so bad I cannot wear shoe’s. My neck, back, shoulders and head stay in continuous pain. I am so fatigued its hard to get out of bed, people think I have got lazy. I was a coach, foreman, now I had to quit my job after 27 years and file for DISABILITY. Iam a mess god help me. I am not lazy, I am not facking, my wife and I haven’t had sex for 2 years, I keep getting denied my social security. I am at the end of my rope. I would give anything to live a normal life. God bless and help you all. I will pray for you and you pray for me. People have no idea what were going thru.

Marie L Says:

I’ve been reading the newer posts and I am so very sad to see so many people suffering how I have been. For me it’s been 10 years. Sue — Thx for leaving your email addy, I’ll be emailing you. It’s always nice to have someone in the same situation to be there for you to listen, try to help, mainly to be a friend who you know won’t “brush you off” as some kind of a hypocondriac! (or however ya spell it..means a faker if anyone doesn’t know that word) Ronnie – I hope you come back to check the postings..Please email me.. I have gone through some similar things as you and I think I can help you.. Anyone here needing a “Fibro friend” I guess it could be called, feel free to email me. My heart breaks for you all and my prayers are with you. One the other hand, it is a relief to know how NOT alone I am. I even made a new email box so I don’t lose emails from Fibro friends in the mess of my main mailbox.
Feel free to email me at:
MemesFibroFriends@gmail.com (Meme is my nickname..my real name wasn’t available – more people with Fibro I guess!)

dave Says:

This website below will simply answer your Fibromyalgia questions with inexpensive healthy solutions.
Also stay away from sugars, color food dyes (especially caramel coloring), aspartame, MSG, and simple carbohydrates. Epson salt baths are also wonderful for body aches and pain.
You will notice that Epson salt key ingredient is magnesium.
http://www.healingwithnutrition.com/fdisease/fibromyalgia/magnesiumstudy.html

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