Scams concerning FM

Thank you www.chronicfatigue.about.com for the information.
The Advertising of Fibromyalgia Treatments
Karen Richards

Beware Fibromyalgia-Targeted Advertising
As we prepare to celebrate National Fibromyalgia Awareness Day (May 15th), we have good reason to celebrate. The awareness level of the public, the medical community and the media is at an all-time high. However, this increased awareness has also made fibromyalgia (FM) patients the target audience for a multitude of fibromyalgia treatment products promising to improve or even “cure” FM.
There are some very good products available that can offer at least a degree of symptom relief, however, there are also many questionable products and a few downright scams. As the understanding and recognition of fibromyalgia has grown, hundreds of companies with health-related products have scrambled to market their products to 10 million suffering patients –– desperate to find something that will help them.

Questionable Advertising
A TV ad asked, “Are you a female with fibromyalgia?” It then offered a free copy of an “eye-opening report” and instructed me to call a toll-free phone number or go to their web site. With the red lights of my inner “scam-alert radar” flashing, I went to the web address. No clue as to what the “report” was about or what product they were selling –– just a form to fill out with my name and address so they could send me the report. Next, using *67 to block my phone number from showing up on caller ID, I called the toll-free number. Once again, I was just asked for my name and address.
Now, I can’t say whether or not this is a scam because I refused to give them my personal information. However, I am automatically suspicious of any company who will not even tell you who they are until they get personal information from you. I do feel fairly certain they are trying to sell something. Their mysterious advertising technique ensures they will have a database full of their target audience –– women in pain, looking for help.

To Buy or Not to Buy
How do you determine which products are worth trying and which are more hype than substance?
Don’t make a decision to purchase a new product when you’re having a really bad day. Your desperation to feel better may cloud your judgment. Wait until you feel well enough to evaluate the product rationally.
Do you personally know anyone who has used this product? Don’t rely on what you heard that a friend of a friend said. If possible, talk to more than one person who has tried the product and get their honest evaluation. Support groups are a good place to ask several people at once.
What kind of proof does the manufacturer offer to validate their claims? Look for reputable research studies and clinical trials. Be careful if their only proof is testimonials of people you don’t know.
Remember that no one product works for everyone. What helps your friend may not help you and visa versa.
Always consult your doctor before trying a new product or treatment. Some products may not be compatible with medications you are taking.

Red Flags
Before trying any new product or treatment, look for these warning signs:

**Products or treatments promising to cure fibromyalgia. There is no cure for FM, so you know upfront they are making a false claim. The product may or may not help improve one or more symptoms, but it will not cure FM.

**Teaser ads that do not reveal the name of their product upfront. Usually they require that you give them personal information before they will tell you their big “secret.” This is simply an advertising ploy to get your name, address and phone number to increase their mailing/calling list.

**Products that claim to cure or help a wide variety of very different illnesses. No one product can cure everything. The etiologies of diabetes, hypertension and fibromyalgia are very different. It is highly unlikely that one product will improve all of them.

**Products that require a fairly significant financial outlay to try. While it may or may not be a quality product, the question you must as yourself is: If this really does help me, can I afford to continue purchasing it every month? If it does not fit into your budget on a long-term basis, don’t waste your money trying it.

**Products that have no verifiable research or clinical trials to back up their claims. The companies selling these products usually offer lots of “personal testimonials” to prove how good they are. These recommendations sound deeply sincere and can be very persuasive. The fact is, though, you have no way of knowing whether these testimonials are even real.

**Companies that offer “free” products or treatments. Read the fine print and ask lots of questions before agreeing to try what they offer. Often there are hidden fees or commitments such as, processing fees, membership requirements, get one month free if you commit to six months, etc. Remember the old adage: If it looks too good to be true, it probably is.

Updated: June 15, 2006

The day after injections

Well after a rough afternoon and night, I made it to today.
Yesterday I was feeling rather crappy all day after my appointment so I tried to make myself as comfortable as possible. I wasn't in much pain because of the amount of Marcaine that was injected before the Depo-Medrol shots but I felt very ill. Then after I ate dinner all hell broke loose...literally!!! After an afternoon migraine I had an intimate moment with the toilet.
Something tells me he hit something he wasn't supposed to yesterday....
We also talked again about the Rhiziotomy and it looks to be more and more the choice I will be heading toward. We talked a little more about the procedure and radio waves are used to burn the nerve at the located needed....interesting. I keep wondering about the pain levels after the procedure. We will see I guess.

The Agony of the Injection

Well today I get my second round of facet injections. I am not looking forward to the immense pain of the procedure or the recovery time, but with the pain in my left leg increasing daily, I am willing to put up with the acute pain. For now anyway.
Well, it is time to get ready for my ride and appointment...wish me luck!

The trouble a tortoise can get into

While sleeping this afternoon because of a migraine, it looks like my torioise Maizer got herself into a little fun and fell asleep half-way through it.
Here is proof that they are just like dogs and cats when it comes to trouble making.


Now she loves plastic bags...we aren't sure why but when she can sneak into them she will play around them any chance she gets.
I am sure more Maizer exploits will be upcoming!

Icky...icky....icky

I feel like total shit lately. A couple of weeks ago, my Baclofen was raised from 60 mgs a day to 120 mgs a day and I haven't quite gotten my equalibrium since then. I have to drink Diet Coke everyday just to keep awake and to keep the headaches at bay. I hope my body becomes adjusted to this soon.
Wednesday is my second round of facet injections and I hope they work out. I really need to get back to the gym and get some exercise. I feel like a total sloth.
UGH!!! I just got out of bed and I need a nap already.

Sorry for the lapse in postings

Ah the recovery time from doing too much. Such a pain in the ass. Since my last post I have been trying to fight back from the total exhaustion I have felt since then. Even now, I need a Diet Coke to wake myself up each day and to just keep going. I haven't bought Diet Coke in this amount in ages!!!! I should buy shares in the company for crying out loud! Part of me thinks that I should be tested for Chronic Fatigue Syndrome or something along those lines. I know that my iron deficency is part of the problem, but taking the iron pills causes major constipation issues for me. So I have decided to just take a daily women's multi-vitamin and see what happens.
Well its another day to relax and try to get my energy back. Wish me luck.

Pain affects 1 in 4 Americans

Ryckman: The world of hurt
From www.rockymountainnews.com

'Invisible disease' of pain afflicts one in four Americans

Pain has become a national epidemic and one of the nation's most dismissed and undertreated conditions. More than 75 million Americans suffer from chronic, debilitating pain, and more than 50 million of them are partially or totally disabled by it, according to the Englewood-based National Pain Foundation. Pain cost Dennis Kinch his job, his home and his family.
"You end up feeling alone on an island wondering who you are now," the Boston man says. "Pain runs your life."

But it wasn't going to ruin it, Kinch decided. The 51-year-old cook suffers from two diseases that make walking painful, if not impossible - so that's exactly what he did. He walked 2,400 miles, from Chicago to Santa Monica, Calif., along Route 66, starting last fall and ending Friday. Along the way, he stopped at 35 pain clinics to talk to patients and doctors as a spokesman for the National Pain Foundation.

"Do what you can when you can," Kinch says. "Sometimes it seems like everything is negative. You have to learn to tune that negative stuff out. That's what keeps people in pain on the couch - they get scared. They're afraid of the pain."

Pain has become a national epidemic and one of the nation's most dismissed and undertreated conditions. More than 75 million Americans - one in four - suffer from chronic, debilitating pain, and more than 50 million of them are partially or totally disabled by it, according to the Englewood-based NPF.

Government statistics show that pain is a factor in more than 80 percent of all physician visits, yet fewer than 1 percent of doctors have training in pain treatment, says NPF Executive Director Mary Pat Aardrup.

"Pain is viewed as a character flaw. It's an invisible disease," she says. "You don't have a bandage, you haven't lost any hair. When someone is in pain 24-7 - and a lot of people are - family and friends tire of hearing about it, and they often go away. Your self-worth and dignity go away. Your identity as a person vanishes. You become the pain."

The portrait of pain in America looks like everyone: It cuts across all genders, races and ages, including an estimated 20 percent of children. But surveys find that people are afraid to talk about it, reluctant to treat it and dismissive of it in themselves and others.

Nicole Hemmenway, of Corpus Christi, Texas, was 12 when she was diagnosed with complex regional pain syndrome, a neurological disorder. It began in her right hand, which swelled, purpled and stayed clenched for more than five years.

"It felt like my hand was being submerged in hot oil," says Hemmenway, now 25. "It slowly went up my arm until I wasn't able to use it at all, then down my left side and throughout my body. I was in a wheelchair, I was bedridden, I couldn't walk, I couldn't get dressed by myself, I didn't take a shower for 10 months."

Hemmenway went through every drug, every procedure, every device. But she never let a doctor tell her she wasn't going to get better. At 19, she realized that her pain didn't have to control her life.

"Most of the time, people are belittled and told it's in their head. You feel like an outcast," says Hemmenway, whose pain is under control. She's now running a couple of miles a day. "I want people to hold on to hope. It will get better, and they're not alone. People do believe their pain."

A third of sufferers in the Partners Against Pain 2000 survey didn't believe that people understood how much pain they were in; one quarter said their families were tired of hearing about it. Nearly 40 percent said they felt isolated and alone.

More than 40 percent said they would spend all their money on a treatment they thought might work.

"There are days when I feel like a broken bottle," a woman wrote to the American Pain Foundation. "All the pieces hurt, and I can't seem to bring them together to make an entire vessel."

Compounding the treatment problem is the belief that pain medications lead to addictions, a misconception that contributes to undertreatment, Aardrup says.

"The vast majority of people in pain are not addicts and abusing or diverting drugs," she says. "(That belief) is putting the squeeze on access to care for chronic pain. There's a fear on the part of doctors that overprescribing may put them in jeopardy, losing their license or even going to prison. People in pain are absolutely dependent on having as many resources as possible."

Pain annually costs the nation more than 50 million lost workdays, more than $3 billion in lost wages and more than $100 billion in lost productivity. About 75 percent of that lost production came from reduced work performance, not absenteeism, according to a 2003 study in The Journal of the American Medical Association.

"We only spend 1 percent of our research budget on pain even though it is our most costly problem," Dr. Rollin M. Gallagher, director of the Center of Pain Medicine, Research and Policy at the University of Pennsylvania School of Medicine, told a congressional hearing on pain last month. Congress is considering the National Pain Care Policy Act, which would improve pain education for physicians, improve access to pain-management services and increase funding for pain research.

The voices of people in pain reflect frustration and despair. In the Partners Against Pain survey, nearly 30 percent said they felt there was no solution for their pain. A third of sufferers had chronic pain so severe and debilitating that they felt they couldn't function as normal people and sometimes felt so bad that they wanted to die.

Writing to the American Pain Foundation, one woman said she lost her job and her marriage and attempted suicide after a car accident left her with chronic, debilitating pain. But she keeps going, with help from doctors, drugs and determination.

"I struggle every day, a delicate balance, like walking on a cliff path. One strong gust of wind and I know that I will fall over," she wrote. "But I turn my face to the wall, take a deep breath and dig my fingers into the rock and walk on.

"As far as I can go."

The hard facts

Here are some facts about pain from the 2000 Gallup survey Pain in America and the 2000 Partners Against Pain report, A Survey of Pain in America:

• Nine in 10 Americans suffer from regular pain; 89 percent reported they have some sort of pain monthly or more often.

• Nearly 26 million Americans suffer from severe pain. Forty-six percent reported moderate pain.

• Nearly 42 percent said they experience pain daily.

• On average, people with moderate to severe pain have lived with it for close to 1 1/2 years.

• Eighty-three million Americans reported that pain frequently affects their participation in some activities. Forty-three percent of respondents reported that pain occasionally affects participation.

• Four in five Americans believe aches and pains are a part of getting older, and 64 percent would see a doctor only when they couldn't stand the pain any longer.

• Sixty percent said pain is something you just have to live with, and 55 percent said they're uncomfortable taking medications.

• More than half said that they prefer being alone when they're in pain and that they're in a bad mood when in pain.

• Eighty percent of patients surveyed think their pain is a normal part of their medical condition and something they have to live with.

• About 40 percent said they're uncomfortable discussing their pain.

• More than half said pain interferes with their sleeping or mood, 30 percent their ability to drive, and 28 percent their ability to have sexual relations.

• Patients are so dissatisfied with the efficacy of their prescription and over-the-counter pain-control medications that 78 percent are willing to try new treatments.

• Two-thirds said their over-the-counter medications aren't effective, and 52 percent of those taking prescription medications said they're not effective.

Pain practitioners

If you're looking for a pain specialist, ask for a referral from your primary- care physician. Here are some questions for a potential pain practitioner from the National Pain Foundation:

• How many cases of my type of pain condition have you treated?

• What are your special qualifications to treat my pain condition?

• Have you participated in any special training about pain-management techniques?

• What is your philosophy of management of my pain condition in terms of medications and alternative therapies?

• What types of medications do you usually prescribe?

• What types of non-medication therapies do you use?

• Where do you refer patients who need additional treatment?

• Is your clinic listed with any professional societies?

• Are you, or is someone in the clinic, available 24 hours a day if I need help?

Ryckmanl@RockyMountainNews.com

Feeling overwhelmed....thanks to hubby!

Well, today I have lots of cleaning up to do. No thanks to my husband.
My husband, who is the healthier of the two of us decided to NOT help me at all this weekend. First off, Friday he stayed home from work because of an infection in his eye...we aren't sure if it is pink eye yet or another type of bactierial infection but he is on eye drops until it clears up. We went to the doctor's and of course we ran all over the place.
Usually when he is home for an extra day, it is going to mean extra work for me to catch up on. The trash built up but he didn't bother to take it out. I did the laundry as usual. I asked him to vaccum the rug this weekend, but of course that didn't get done. So now, I have to do it. I shouldn't as a rule be vaccuming but the rug is getting rather grody, so it must be done. Then finally he decides to cook! He of course made a mess and didn't even do the dishes so now I have a butt load of dishes to take care of.
Its time like these I really want to cry because I know the amount of pain I will be in and how tired I will be. Nevermind what I should do first...yes it is that overwhelming to me. So feeling guilty, I will be cleaning up his messes along with my own (I am not going to say I am totally innocent here!).
Well, I must go....so much to do....so little energy to do it with.

The History of Fibromyalgia

History of Fibromyalgia
From Karen Richards, Your Guide to Fibromyalgia & Chronic Fatigue Syndrome. www.chronicfatigue.about.com

Although the term “fibromyalgia” was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times.

Early Evidence: Following is Job’s vivid description of his physical anguish: “I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?' But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.” (Job 7:3-4; 30:16-17 - NLT)
Another well-known person who reported fibromyalgia-like symptoms was Florence Nightingale, an English army nurse during the Crimean War (1854-1856) who was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910.

Terminology: This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. (Fibro – meaning fibrous tissue, my – meaning muscle, and algia – meaning pain)
It wasn’t until 1990, when the American College of Rheumatology developed a diagnostic criteria for doing fibromyalgia research, that the term fibromyalgia gained wide usage.

Theories: Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could fine nothing wrong with the muscles. For a while, it was theorized that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.
Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years fibromyalgia was thought to be a psychiatric or psychosomatic disorder. Even today, there are a few medical professionals who insist on hanging on to this theory.

Answers: Fortunately, the 21st century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon. Hopefully, one day the history of fibromyalgia will be just that –– past history.

Sources:
Florence Nightingale - A Biography, R.E.S.C.I.N.D., 1997-2000,
Fibromyalgia, Wikipedia, 2006,
Updated: June 15, 2006
Karen Lee Richards, About.com's Guide to Fibromyalgia and Chronic Fatigue Syndrome, is a nationally-known patient advocate. She is co-founder of the National Fibromyalgia Association and former executive editor of Fibromyalgia AWARE magazine.

Tips on how to take care of you!

How To Take Personal Responsibility For Chronic Pain
Anne Asher,Your Guide to Back and Neck Injury / Chronic Pain. From www.backandneck.about.com

Chronic pain does not behave according to the same rules as acute pain. Finding the cause of chronic pain can be difficult or impossible.

Because chronic pain is elusive, often the patient is discounted or compromised in the process of diagnosis and treatment. It might take a patient months, if not years of doctors' visits to get a definitive diagnosis. Worse, the patient may be told that the pain is "all in your head", and be advised to "just deal with it".

Difficulty: Easy
Time Required: Ongoing
Here's How:
Understanding is where it all begins.

Research your condition and chronic pain in general. Resolve to take personal responsibility for your pain.

Know the difference between the two forms of pain: Acute and Chronic.

Chronic pain is defined as pain that "outlasts the usual healing process", according to Neuropathy-Trust.org. If pain persists beyond 3-6 months, chances are it is chronic.

Unlike acute pain, which is pain that responds to an actual event of the body, chronic pain can be caused by an injury or illness, or it might appear out-of-the-blue. This is one of the reasons chronic pain is difficult to diagnose.

Understand how chronic pain works in your body.

To others chronic pain may seem like it is all in your head, but there are acutal physiological processes that are happening. Either:

The way your nervous system processes the information associated with pain has been amplified. This might be due to:
injury
illness
other factors
cause unknown, or
Your nervous system just normally processes pain in such a way that pain is amplified.


Mobilize personal resources by learning to relax.

Many pain management specialists prescribe relaxation techniques for their patients. Just because your body works in a more high strung way, doesn't mean you have to.

Keep a Pain Journal.

By keeping track of:

where and when you feel pain
the quality of the pain
what triggers it and what makes it go away
you will have a basis of communication with your medical professionals.

You may also wish to write record your food and water intake, hours of sleep, meds taken and exercise activity.

Resolve to find medical professionals with whom you are comfortable. Stand firm in that resolve as you look for them.

You, in your pain have a right to be taken seriously. A good doctor, therapist, etc. will listen to you and be willing ot work with you as a partner in healing.

Drink plenty of pure water

Studies have shown that drinking enough water decreases the body's inflammatory response. Inflammation is at the root of many diseases and conditions in our society.

Seek counseling and share your feelings.

People who live with chronic pain are prone to a feeling of isolation. Isolation is a powerless place to be. Sharing your feelings and concerns can be an effective release, and can even add to your ability to relax.

Give a face and a meaning to your pain.

If you are creative, is there a way you can express your pain as a work of art? For inspiration, you may wish to view the Chronic Pain Visual Art Project. If you are not creative, writing about your feelings and pain may provide you with new perspective.

What You Need:
A Positive Attitude
Willingness to take Personal Responsibility
Courage
Assertiveness
An Open Mind - Especially to New Experiences and Information

Anne Asher is a health writer with a focus on back and neck issues, musculoskeletal health and alternative medicine. She has worked as a clinical massage therapist, a movement therapist and a Pilates instructor. Anne is the former ergonomics editor of BellaOnline.

Facet Injections.....Again!

Well in a couple of weeks I am off again for another set of facet injections. While they are painful, they do help. I hope this time longer than before...that way I won't have to even think about the Rhiziotomy....e-yow! I also got a raise in my daily Baclofen count...I now take 120 mgs a day. 30 mgs 4 times a day....we will see if that works out for me too.
I got my trigger point injections yesterday and boy I am hurting....so its on the couch to rest today.

To do or not to do the dishes????

I must apologize for my lack of blog postings the past week or so. Our computer crashed and I have been very busy bulidng it back up. What a chore!

Did you ever have one of those days when you have a chore to do but you just don't feel like doing it, so you put it off??? Well my menace for the day is the dishes. My husband who had a nice three day weekend actually made dinner twice, but of course when it came to the clean up slacked. Typical guy or what???? Sigh. So now there is an abundance of things in the sink and has creeped up onto the stove since he made pizza and the pan is just too big for anyplace else.
Unfortunately I am so tired and not feeling well the past few days that the amount of dishes keep piling up and up..and up!
UGH! Sometimes I hate having a chronic illness. Today is just one of them days.

My little girls

As was stated in a previous post. I have 7 tortoises. Here a couple more of them. They are Tiki-liki and Ti-ti. Both are Red-footed tortoises and I call them my girls. Here they are relaxing under the heat lamp. Oh to be a tortoise...I think when I die I would like to come back as a pet tortoise.

Why don't people get it?

I have been officially ill for about 6 years now and still people don't get it. The more I take a look at the world, the more I realize that most people don't understand the total effect that pain has on the body nevermind that of the human spirit. Take for example my husband.....
He has been on me for months to loose weight thinking that I will feel better without all this weight I carry around. Doesn't he remember that when I weighed less than I do now I was in MORE pain???? Sorry but in some cases weight does not equal more pain!!!!! Wake up people!!! Sometimes we can't control what our body does.
And people wonder why pain patients get such a bad rap!

National Pain Awareness Month

I have just been informed that September will be National Pain Awareness Month.
For more information about chronic pain and what is being done to bring awareness to the issue, please visit the website www.nationalpainfoundation.org.

Why Good Pain Management is so hard to find

Here is an article about pain killer abuse. One of the main reasons why those in chronic pain cannot find proper pain management.

Prescription Painkiller Abusers May Account for Many Lethal Overdoses, Experts Say
By Miranda Hitti
WebMD Medical News
Reviewed By Louise Chang, MD
on Monday, July 24, 2006


July 24, 2006 -- Accidental deaths from prescription painkillers have risen in recent years in the U.S., show no signs of slowing down, and may be largely due to painkiller abuse.

The CDC's Leonard Paulozzi, MD, MPH, and colleagues, report the news in Pharmacoepidemiology and Drug Safety's online "Early View" edition.

Paulozzi's team checked CDC death certificate data on unintended deaths from opioid painkillers including oxycondone, hydrocodone, fentanyl, and methadone. Their findings:

Unintended prescription painkiller deaths rose 91% from 1999-2002.
Unintended deaths from heroin and cocaine rose by lesser amounts during the same period (about 12% for heroin and nearly 23% for cocaine).
The researchers write that in 2002, the latest year studied, "opioids were listed without cocaine or heroin in 4,451 deaths that year, more than the combined number of deaths listing either cocaine alone (2,569) or heroin alone (1,061)."

Drug Sales on the Rise

The rise in unintended prescription painkiller deaths mirrored an increase in sales of the drugs. The data also showed several clues about painkiller abuse.

For instance, men in their 40s accounted for many of the opioid deaths. And the background of people who accidentally died using prescription opioids matched those from other drug abuse deaths.

Those traits "do not match those of people who typically experience chronic pain, who are more likely to be female and older," the researchers write.

More steps may need to be taken to prevent painkiller abuse "without diminishing the quality of care for patients with a legitimate need for pain managementpain management," write Paulozzi and colleagues.

Painkiller abuse is a big problem, journal editorialists agree.

One editorial -- written by researchers including David Joranson, MSSW, of the University of Wisconsin at Madison -- calls for better data on painkiller abuse. The data Paulozzi's team used don't show which patients were abusing painkillers.

Another editorial -- written by Scott Fishman, MD, of the pain medicine division at the University of California, Davis – calls for aggressive action against painkiller abuse.

But drug abuse solutions "must not undermine patients in pain," Fishman writes. "The least we can do is make sure that the casualties of the war on drugs are not suffering patients who legitimately deserve relief," he adds.


--------------------------------------------------------------------------------

SOURCES: Paulozzi, L. Pharmacoepidemiology and Drug Safety, July 24, 2006; online "Early View" edition. Joranson, D. Pharmacoepidemiology and Drug Safety, July 24, 2006; online "Early View" edition. Fishman, S. Pharmacopepidemiology and Drug Safety, July 24, 2006, online "Early View" edition. News release, John Wiley & Sons, Inc.

I feel icky! I'm sure you do too!

Okay....
AC - Check
Water - Check
Sunscreen - Check
Hat - Check
Staying out of the sun - Double Check

Alright....now I am doing what they say to help people stay cool, but why do I feel like shit? Oh yeah, that's right I have Fibromyalgia. DUH! I keep forgetting. As I stated in yesterday's post, as much as websites say that heat is a good thing and only cold affects FMers, sorry but heat affects us too!!!! Wake up people!
There are just so many conflicting websites with erroneous information or just plain WRONG information that it is so hard to know what to do with yourself to keep on an even keel. Especially if you are a newbie to the world of FM, as so many are nowadays. The best advice I can give a person with FM (old-timers and newbies) is to take inventory of your body in each and every situation. And I mean EVERY situation. It is the only way to keep track of how you will do daily. Just the simple act of doing dishes, going grocery shopping or visiting a friend can bring on a pain flare on certain days. It is okay to let the dishes sit for a day, a true friend will understand and let someone else can do the groceries (let your husband (or wife or teenaged child) do them for a change!).
Well today I have an appointment with my pain doc for Trigger Point Injections (or TPIs as I call them) and hopefully I will get some relief from the pain that way. I also may be getting new pain medication because the med I was on didn't seem to be controlling my pain as it should. So I have been taking a two week trial period off the med to see if I feel the same off it as I did on it. Well, I did, so obviously it wasn't working as it should. I just hope that whatever he gives me is a generic, for cost reasons obviously, and that it will help me. Today is a really rough day for me so far and a vacation from the pain would be a welcome friend right now.
Well that is all for today.....keep cool everyone!


Oh I forgot to add....got the results back from my colonoscopy...I am fine. Phew! Another bullet dodged.

The Life of a Wondering Tortoise

My husband and I have 7 tortoises of different breeds as pets. Our largest is a 10 pound Yellow-footed tortoise named Daisy Mae AKA Maizer. Well because of her size, when she wants out of her tank, she wants OUT!!!! So we let her wander about about the apartment until her heart is content to prevent her from making a racket all day long!
So here are pictures of my shelled Yorkie as I call her.

She will be out the rest of the day!

Summer Heat and Fibromyalgia

Two things that DON'T go together...that is for sure. Today is the start of a two day triple digit heat-fest in my neck of the woods. Unfortunately there is absolutely nothing I can do for it. Regardless of AC, the FM goes into motion and there is no way to stop it.
Thanks to www.fibromyalgia-symptoms.org for the information.

How Does the Weather Affect Fibromyalgia Symptoms?

Many fibromyalgia patients claim that changes in the weather directly affect many of their symptoms. In fact, many fibromyalgia sufferers claim that their symptoms vary according to temperature changes, changes in air pressure, and changes in precipitation in their part of their world. Most fibromyalgia sufferers claim that they experience changes in:
fatigue (I am very tired all the time)
sleep patterns (I can't sleep when it is this hot!)
headaches (Oh yeah!)
muscle pain (Same as above...feeling like crap today!)
the number of symptom flare ups (Not yet but I expect them to get hopping anytime!)

Who is Affected by Weather Changes?
According to a study performed in 1981, a large percentage of fibromyalgia sufferers may actually be sensitive to changes in the weather. In this particular study, 90% of patients claimed that weather was one of the most important influences on their fibromyalgia symptoms. And fibromyalgia sufferers aren’t the only ones to experience weather-related symptoms. You may also find that the weather exacerbates your symptoms if you have:
rheumatoid arthritis
multiple sclerosis
osteoarthritis

What Weather Factors Affect Fibromyalgia Sufferers?

There are five major weather factors that appear to affect fibromyalgia symptoms. These include:

Temperature: Rapid changes in temperature can sometimes trigger a fibromyalgia flare or help to ease fibromyalgia pain. Cold weather tends to make fibromyalgia symptoms worse, while warmer weather tends to ease those troublesome symptoms. (Not necessarily but mostly true...any changes affect me either way.)
Barometric Pressure: Barometric pressure is a measurement of the weight that is exerted by the air all around us. On beautiful sunny days, barometric pressure tends to be quite high, but during a storm or similar weather front, barometric pressure drops suddenly. Fibromyalgia sufferers often find that these changes in barometric pressure can trigger muscle aches and pains. (Headaches....migraines to be exact plague me during these times.)
Humidity: Absolute humidity is a measurement of the amount of water vapor present in each unit of air. When absolute humidity is low, fibromyalgia sufferers often report headaches, stiffness, and flares in widespread pain. (This is a load of crapola.....humidity equals barometric pressure, which equals migraines and pain!!!)
Precipitation: Precipitation is the term used to refer to any type of water that falls to the ground from the sky, including rain, sleet, snow, or hail. Precipitation is often accompanied by a change in barometric pressure, and therefore may exacerbate your symptoms of pain and fatigue. (You bet your bippie!)
Wind: Whether it’s a light wind or a gale-force wind, wind generally causes a decrease in barometric pressure. This means that wind can trigger fatigue, headaches, and muscle aches in fibromyalgia sufferers. (Ditto!)

Weather and Fibromyalgia: The Studies

Numerous studies have been conducted in order to evaluate whether or not fibromyalgia symptoms do appear to be influenced by changes in the weather. Most of these studies have had surprising results.

In 2002, a study was conducted in Cordoba, Argentina, where there are four distinct seasons every year. The study involved fibromyalgia sufferers and a healthy control group and aimed to find out whether pain symptoms could be linked to specific weather changes. Participants were asked to rate their pain symptoms on a scale from one to ten, every day for 12 months. After 12 months, these symptoms were correlated to weather patterns for the entire year. Researchers found that pain symptoms of the participants with fibromyalgia correlated directly to weather changes. Specifically, pain increased as temperatures fell and atmospheric pressure increased. The healthy control group did not show any correlation between pain and weather patterns.

Another study performed in Norway found a similar relationship between fibromyalgia symptoms and the weather. Fibromyalgia symptoms appeared to get worse during the months of December and January, but began to improve during April and May. This suggests a direct relationship between colder temperatures and lower barometric pressures and a rise in fibromyalgia symptoms.

Why Does Weather Affect Fibromyalgia Symptoms?
Unfortunately, researchers do not yet know why weather appears to affect fibromyalgia symptoms so much. However, there are a few possible explanations:

Change in Sleep Cycle: Weather, particularly hot and cold temperatures, can sometimes affect the way in which you sleep. This could have a great affect on symptoms and flares if you are a fibromyalgia sufferer.
Change in Circadian Rhythm: Your body operates using an internal clock known as the circadian rhythm. Changes in seasons and the amount of light that your body receives can throw off your circadian rhythm, causing you to feel fatigued and more achy then usual.
Pro-Inflammatory Cytokines: There does appear to be a relationship between low temperature levels and an increase in the number of pro-inflammatory cytokines in the body. These cytokines appear to be related to pain intensity.

Dealing with the Weather: Managing Your Fibromyalgia Symptoms
If you find that your symptoms are influenced by weather changes, here are a few tips to help keep you more comfortable:
Dress in Layers: Prepare for those chilly days by dressing in two or three layers. This will keep your body warm and allow you to shed excess clothing should you become hot.
Avoid Cold Temperatures: Try to keep your air conditioning off in your house during the summer, and keep your heat up during the winter months. If you have to go outside in the cold, wear gloves, proper boots, and a hat. This will keep your extremities warm and prevent aches and pains. (Uh....not necessarily true. Everyone is different. Please check your local FMer for details! )
Bring the Sunshine Inside: If you are finding that you are particularly fatigued or depressed, try to increase the amount of light you have inside of your house. During the gray winter months, it is easy to become depressed and tired, which will only make your symptoms worse. Purchase some halogen bulbs or a special light box to help improve your mood.

While these are good points to say, every FMer is different and are affected by things differently. This is a good generic article about how the weather affects people with FM.

Stay cool everyone!