Top 10 things not to say to Chronic Pain/Illness, Fibromyalgia Patients

10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy – like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Ta Daaa...... Here it is - the number one thing you should NOT say to a fibromyalgia patient:



1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said.

Finding that wine could help stop or counter the symptoms of inflammation in those with RA

alk about interesting news! I was totally amazed. Of course my Grandmother's Doctor had her drink a tiny glass of "Morgan David" grape wine when she was alive, just before bedtime. Not only did it help her sleep but she has issues being anemic most of her life, and the wine helped with that. Her red blood cell count stayed good for the majority of the time, with that one tiny glass of wine daily. This could potentially lead to a cure, and reasons for RA. Just goes to prove the old saying "Everything in moderation".

Vitamin D playing out a role in autoimmune illnesses, or lack thereof..

Since I am already taking a daily 1000 of Vitamin D due to the role I found it can play with pain, and also possible aid for weight loss, or keeping weight down. I thought I would share this interesting article also.

Rhia

Talk about an amazing new way to have totally new joints

This is incredible! What a wonderful thought that you may be able to re-grow totally your own joints, or possibly find out how to begin the re-growth process when the joints first begin to wear out. This is just awesome.

Thank goodness for our scientists, medical researchers, and the genius' levels of people we have on this planet we call Earth!

State and Federal Government Overstepping their boundaries with our physicians

When is the last time you had major issues getting medications, treatments, tests and so forth that your physician orders due to either insurance denying, Medicare issues, or lets say state and/or federal government stepping in to tell your doctor exactly what he can and cannot do, what he can and cannot prescribe, what he can run as far as testing or cannot do? Well this is just exactly what is happening at this very moment.

For myself, I have ran into numerous times that either my insurance wanted a special form from my doctor, for a test, evaluation, a certain "non-generic" or name-brand prescription I need because the generic version is NOT the same, or you need a "prior authorization" to get a certain procedure, surgery and so forth done. I am sure I have not been the only one with what my OWN DOCTOR says is correct for me, over rode by some pen pusher sitting behind a desk, that does NOT know my history, my physical condition, my medications, or anything about me. That always infuriated me, when I feel they have no right to go over my doctors head.

Well, now here is something even worse. Not only is our own Federal government involved with this, now one of our states, Washington State, has decided to step in and meddle in the affairs of our doctors and what they deem is proper therapy for us.

Anyone who is a chronic pain patient, who has jumped through hoops for years trying to get properly treated, with medications, therapies, surgeries, alternative therapies, getting test after test, having multiple surgeries, spending not only money, but our time, trying to do exactly what our physicians tell us, in order to gain the proper relief from ongoing, unending, nagging to the point you cannot function horrible, nightmarish chronic pain. For myself, as well as many, many of the hundreds of thousands in pain, it it a living hell. Your time, your life is NOT you own, but lived through the body of never ceasing pain. You awake with pain, you eat pain, you sleep pain, it rules your life like a bad dream. You cannot escape its evil grips. So, you go through all it takes to get the proper medications, that almost immediately change your course of life forever. You finally can function, you get your life back, you can possibly work again, take vacations again, take care of not just yourself, but your home, your family again. These tiny pills or one patch take the horror filled days of pain, and change them into days and days of feeling like you do want to live life to its fullest. But, you are under the gun constantly. You must abide by the very strict guidelines of a pain contract, which you happily do if that means that you are NOT ever pain free, but enough of it is gone that you can function. You dare NOT ask for a higher dose, or to try a different type, thinking the relief might get better, for fear of the stigma given by some doctors, specialists, and society over narcotic pain medications.

Too many times, you have heard it, or read articles about "addiction", about the stigma of being a "dope" head, a "drug" seeker, an abuser, and all of the other terrible things associated with those who "are addicted" to pain medications. You even hesitate to ask or find relief because of the social stigma placed upon those who use the medications illegally look for a "high" which you just cannot fathom. Any person who is legitimately in pain, looking for a doctor who will finally put an end to sometimes what is years or even decades of needless suffering. You have ran the gamut of doctors, specialists, therapists, psychologists, and done each and every thing asked of you. You possibly have gone through doctor after doctor, pages and pages of doctors notes, your files 5 or 6 inches thick, where you have griped, fussed, complained, cried, begged, done it all in the name of knowing that there has to be someone, something, somewhere to give you relief from the never ending, life altering, nagging, severe, chronic daily pain, the shadow of hell that lives for you, many times, it is you. Your body ravaged, your spirit dampened, your family, your friends, those that know you seeing the suffering that you have needlessly gone through before finally THAT RAY OF HOPE comes forth.

You finally find that miracle worker. Finally someone takes you seriously. Finally you get through the red tape, the paperwork, the diagnosis, after diagnosis, and one doctor finally gives you the prescription that changes your dark, black clouds into days of blue skies, without the pain.

My story, is not unique. I am one of the hundreds of thousands that have spent years doing just so. Trying to find someone who listens. At last, the medication you have needed for years is given to you. You follow the rules, you adhere to the very, very strict guidelines of your only saving grace. You go through the steps, you never take more medication than absolutely prescribed. You never call early for a refill, you willing take a "pee" test if necessary, you make your appointments on time, never missing one whether they are monthly, quarterly etc. Yet, one day a new "law", a governmental body, one that has never seen you steps in, and suddenly, your world is crushed, they are demanding that you be taken off the very thing that has practically saved your life. What have you done wrong? What have you abused, why is it that someone that does not know you, sitting behind a desk, who is NOT your doctor, not a family member, no one you would even meet on the street is making the decision to say you do NOT need your prescription pain medications?

So, does that mean you do not need your insulin if you are diabetic? Does that mean your high blood pressure pills are also "addictive"? Does that mean the cancer medications are causing a "high"? Does that mean the cholesterol medications that keep your triglycerides in check causing you to be a "junkie"? NO! And neither does the fact you need your narcotic pain medication because of the suffering of pain that you cannot help, that you endured, that is something physically that happened and you did not want it, cause it, and are not "making it up", or it is NOT all in your "head". Of course our bodies may become "accustomed" to medication. But, that is any medication you take due to a lack of something your body does not do without them. Whether you are taking blood pressure medications daily because without them your blood pressure would rise high enough to cause a stroke or heart attack, you take insulin injections daily for without them your sugar levels would rise high enough to cause kidney failure, coma and possibly death, your cholesterol levels are dangerously high, and without your daily medications, they could cause plaque to build up in your arteries, where it could break off causing blood clots, or narrow your arteries enough to cause a heart attack or stroke. Or take your daily medications for thyroid. Without them you would suffer from lack of or too much hormones that your body cannot regulate without proper medications. Think of the number of chronic illnesses we have, that without the life saving medications that are body does NEED, does REQUIRE, that without them, we would not only be ill, but possibly die without those medications. One might say our bodies are "addicted" to any number of daily prescriptions our doctors deem necessary due to our bodies not making enough, or making too much, or something we need in order to live. What if the Federal or State government one day suddenly decided that those were addictive, thus they take them away from the very patients that need them? This is just how it is for anyone that has their life altered due to chronic pain, that your body has, that you have NO control over, but with the proper medications and/or treatments.

The growing population is growing in the number of those of us that become completely disabled due to lack of taking care of pain. Migraines, Lupus, Multiple Sclerosis, Diabetic Neuropathy, Nerve Pain, Severe back pain due to chronic degeneration or injury, etc....

to be continued......

Multiple Sclerosis Could Have Two Types Suggests Study

New research from the US suggests there may be two types of multiple sclerosis, each with a different response to beta-interferon, the main drug used to treat the disease.

I thought this was something those with MS might find interesting. If this is the case, this could unlock more medications, and a possible cure. Finding out there could be more than one "strain" of MS is a huge situation for those suffering from this autoimmune illness. I will post more articles when they surface about this.

Researchers Uncover Biological Rationale For Why Intensive Lupus Treatment Works

It makes total sense why two weeks ago my own PCP gave me two injections, rather than one due to a Lupus flare I have been dealing with. I wondered why he changed the "protocol" and gave me two shots, but did not increase my oral prednisone. After reading this article, now I know. He has been much better in dealing with my Lupus Flares, helping with medications, and keeping my Lupus half way under control, than any of my Rheumys. Hopefully Benylsta will be out and approved very soon. I have finally found another Rheumy, but my appointment is not until the 2nd of September! After the last 5 turned out badly, they really did little or nothing to help with the Lupus, I am hoping this woman will be better. It is nuts, but I am finding more so called "specialists" like Rheumy's in the business who do little to deal with Lupus.

Opioid Medications & Risks: FDA Extends REMS Comment Period to October 19, 2010

I found out that the FDA did turn down the first REMS submission, but because the FDA felt the rules and regulations WERE NOT ENOUGH! when it comes to narcotic prescriptions. Please see the link, read the enclosed information on that link and submit your opinions, concerns, etc. Anyone who is a chronic pain patient, a caretaker, loved one, or professional please take the time to read over the information, and let the committee and the FDA know your stories, concerns, etc. This is an extremely critical issue for anyone in chronic pain, whose very quality of life depends upon our medications daily to continue to be able to work, and have a life. Thanks so much.

Grand News! The Pain Patients Voices have been Heard.

This is a great victory for each of us who do what our pain specialists and other doctors tell us. It is an awesome day knowing our voices were heard. Thanks to the FDA panel for paying attention. I agree that patients and doctors alike should be trained in the use of strong pain medications, but we should NOT be punis...hed for the very very few who choose to abuse whether it be a quack doctor or a patient. It is be proven that the majority of pain patients do exactly as their doctors tell them, they abide by the rules and they do not abuse their meds.

Taking Decades to know what is wrong with you.

This is so true, in many more cases that not. Our doctors are short handed, over loaded, under staffed, and even the best of them can overlook symptoms, or are pre-occupied with something else (even though they should be listening to the patient) when we go in with complaints. All too often difficult diseases like RA, Lupus, FM, and a whole host of others get mis-diagnosed. Not just by one or two doctors but sometimes by dozens. Here is a great article about just that. How many of us suffer for years and years thinking we are nuts, before that one particular doctor puts all of the puzzle together and "Viola'!" finally we have a correct diagnosis.

Unilever Builds a Facebook App To Help Indians Whiten Their Skin

This is ridiculous. I have assumed that the reason we have these types of skin creams are for those of us with issues of discoloration of our skin from things such as Lupus, birth control pills, other types of medications, sun damage, and so forth. There always has to be some underhanded reason for a company to make some products. This is fine if that is what the person with a darker skin tone wants to do, but I don't feel a company should "market" and target specific groups for this type of thing.

End the "doc" Fix

This is the very reason we have total hell trying to find reputable physicians to take care of us. They keep continuing to fight Congress tooth and nail to get paid. Then, they are paid less than just about any other insurance, including people that are self-pay without insurance. Have you ever tried to get a doctor to see you on a "cash basis"? It is almost impossible, but if they do, many charge an insane amount of money, for the first visit, and others. If you do not have insurance, more than likely your income would not allow you to pay $400.00 plus for an office visit. Medicare needs a permanent solution and to pay doctors what they are owed, yet rid this nation of the waste and fraud involved.

Multiple sclerosis successfully reversed in animals

August 11, 2009

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This is Dr. Jacques Galipeau of the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University. Credit: Claudio Calligaries/McGill University

(PhysOrg.com) -- A new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal.

More Great News from Lupus Research

More incredible news from the Lupus Research Institute! This is incredible. I keep reading more and more positive things about potential ways Lupus could be truly taken off of the "mystery" list of chronic illnesses someday. This could also lead to ways we can alter, change or possibly iradicate the way this life-altering disease works in our bodies. Possibly this could lead to the reasons why so many get Lupus, and why the numbers are growing daily of those with often a mis-diagnosis. Often times people, especially women like myself may go a decade or longer before doctors find out we have Lupus causing a myraid of all types of symptoms. Severe Fatigue, severe and chronic pain in the joints, muscles, and everywhere in the body. Cold sweats and chills, mine happen to occur often at night. Raynaud's and Sjogren's often couple together and you suffer from not only one autoimmune disease but several. Even Rheumatoid Arthritis, of which now I have developed symptoms of it. Smaller joints, my fingers, toes, hands, wrists and ankles both sides are in horrible pain, and morning stiffness. Lots of things going on in your body, that can affect the skin, muscles, bones, joints and also vital organs such as the brain, heart, kidneys, liver and so forth. We can no longer afford to ignore this horrible, often life changing disease that leaves you wondering if you are going nuts when sometimes tests do not show up with reasons.

Rob Thomnas' new song "Her Diamonds" about his wife's battle with a "Lupus-Like" Autoimmune Disease

This is an amazing song and video. Rob Thomas of Matchbox 20 truly brings the realms of an often mysterious, sometimes deadly disease, Lupus, as well as the many other autoimmune illnesses to the real world by the song he has written for his wife, Marisol Maldonado Thomas, who suffers from an autoimmune illness, much like Lupus. This "Wolf" disease has been around for decades, although there has not been much research to look into a cure, the way Lupus develops, why women get it, or even medication to reduce the horrible symptoms, and possibly deadly way it attacks so many, especially women. It is thought that around the globe there are as many as 1 in 25 women that may get this disease in their lifetime. Please check out Rob's video, as well as the dedication video from John Lennon's, Lucy in the Sky with Diamonds, also written about a dear friend of his that just lost her battle with Lupus, in the past few months.

http://www.youtube.com/watch?v=0HyD-bHFFjI


The optimistic good news is that after over 5 decades of really not having any one medication specifically to fight Lupus, "Benlysta" now stands upon the brink of being approved by the FDA for use against Lupus! I stand ready to be first in line to try it!

Please follow along the journey that is mine, as well as hundreds of thousands of others in the battle against this life altering, and sometimes life taking disease.