A Matter of Perspective and a Paradigm Shift and More

A Change of Pace for Today’s Blog Entry! Enjoy!

Dear Mother and Father:

Since I left for college I have been remiss in writing and I am sorry for my thoughtlessness in not having written before. I will bring you up to date now, but before you read on, please sit down. You are not to read any further unless you are sitting down, okay?

Well, then, I am getting along pretty well now. The skull fracture and the concussion I got when I jumped out of the window of my dormitory when it caught fire shortly after my arrival here is pretty well healed now. I only spent two weeks in the hospital and now I can see almost normally and only get those sick headaches once a day. Fortunately, the fire in the dormitory and my jump, was witnessed by an attendant at the gas station near the dorm, and he was the one who called the Fire department and the ambulance. He also visited me in the hospital and since I had nowhere to live because of the burnt out dormitory, he was kind enough to invite me to share his apartment with him. It’s really a basement apartment, but it’s kind of cute. He is a very fine boy and we have fallen deeply in love and are planning to get married. We haven’t got the exact date yet, but it will be before my pregnancy begins to show.

Yes, Mother and Father, I am pregnant. I know how much you are looking forward to being grandparents and I know you will welcome the baby and give it the same love and devotion and tender care as you gave me when I was a child. The reason for the delay in our marriage is that my boyfriend has a minor infection which prevents us from passing our pre-marital blood tests and I carelessly caught it from him.

Now that i have brought you up to date, I want to tell you that there was no dormitory fire, I did not have a concussion or a skull fracture, I was not in the hospital, I am not pregnant, I am not engaged,I am not infected and there is no boyfriend. However, I am getting a “D” in American History and an “F” in chemistry and I want you to see those marks in their proper perspective.

Your Loving Daughter

Sharon

(Sharon may be failing chemistry but she gets an A in psychology)

_______________________________________________________

A True Story

Have anyone of you eve been to New York City? I mean NYC in August on one of those hot and humid days, where you can smell the city, where it’s hard to breath, where the smoke seems to rise from the streets and where it is almost impossible to feel comfortable due to the perspiration dripping down from your face on to your clothes.. Well this is a true story that occurred on one of those days at about 4:00PM just as rush hour was starting to happen. The setting is the IRT (a subway line), with broken air conditioning and the first group of workers heading home after a sweltering day of work at their desks in the thousands of similar office buildings that make up downtown Manhattan.

As it was still the beginning of rush hour, there were a few seats left in the subway car. The train stopped at a station and a man entered with his 3 children, aged 5, 7 and 10 years old. Each of the children had a can of Coca Cola in one hand and an ice cream bar in the other hand.The father found a seat, the train began to move and this was the signal for the children to start acting like children. the children began to run up the aisle of the train, they grabbed the bars (people who stand hold on to) and swung themselves around and around while their soda went flying. each time the train would lurch, one or more of the children would lose their balance and fall on one of the other passengers laps, sticky fingers and all. All the while, the father, sitting his his seat, just looked down at his feet.

If you know anything about NY’ers, they were becoming very angry at the children and the father, the hot and humid weather was no help for their moods. They began grumbling under their breath about how the father was not watching the kids, how the kids could get hurt and more importantly how one of the children could hurt one of the passengers as they lost their balance. The father did not seem to notice anything amiss which just angered the passengers that much more.

Would you not agree with me that the father is being very irresponsible overall?  Would you agree that all the passengers had every reason to be angry and that something sooner or later had to occur? I certainly would be furious with the situation, and I’m sure that you would be too!

This scenario continued as the train kept moving, yet there was an older woman who watched the situation closely and saw something different, something that no others on the train were able to see. Being an elderly woman, she carefully stood up, as the train moved, walked across the aisle to the man and asked: Sir, is everything alright, are you alright? The father of the children did not say a word, just continued to look down. The elderly woman than asked: Sir, is there anything I can do to help you?

The father of the children looked up into the elderly woman’s eyes and said: My children and I are headed home and returning from the hospital. My wife of 15 years has just died from Breast Cancer and I don’t know, for the life of me, how I’m going to tell my kids that their mother is never coming home again.

What you’ve just experienced is called a Paradigm shift! A dramatic change in your thinking that would have seemed impossible before. W can all experience a paradigm shift in the way we look at our health.

_____________________________________________________________

Stuck at the Fair

(Posted on another fibro site and used with permission)

Living with these illnesses can be like being stuck at a bad fair. We want to get off of the wild rides, and we are tired of playing the games. The smell of the food makes us sick, and the music hurts our ears. We want to get out, but we can’t find the exit and get trampled by the crowds.

The ups and downs of the severity of our symptoms is a roller coaster. We are strapped in our seats and we just want to get off the ride. Days turn into weeks, weeks into months, and months into years, yet we never get used to the ride and still want off.

Trying to judge our limits is like trying to hit a moving target in one of those fair games. We keep playing and thinking we surely have it this time, only to find out that we overdid it again, and missed the mark. Symptoms change frequently and it may feel like we are constantly playing a game of Whack-a-Mole. Every time we get one symptom under control, another one or two pop up.

Suddenly we find ourselves in the House of Mirrors, lost in fibro fog. It is hard to find our way out and everything seems distorted.

We may get stuck on the Tilt-a-Whirl, spinning around and around. But the dizziness doesn’t subside after we get off. Minutes go by and still the world is spinning. For those of us with orthostatic intolerance, it may feel like we live on the Tilt-a-Whirl.

Somehow we end up in the side show acts and find ourselves lying on a beds of nails, only it really is as painful as it looks. And we find ourselves with swords down our throats, which are already sore and raw. The pain pierces through us. Maybe we find ourselves the unwilling assistant to the magician who puts us in a box and puts swords through it. Unfortunately, we feel each blade as it painfully penetrates us.

It is like we are trapped on the Ferris wheel and every time it goes to the bottom, we think we may finally get off. Instead it keeps going, like the many hopes that we may finally get better…finally find a treatment that works…finally get to live our lives.

Do you have a metaphor that you like to use for your illness or symptoms?


Monday’s Blog: You are what you eat Part 1

Fibromyalgia Medications Part 4 or (The Good, The Bad, The Ugly)

Lets continue with our talk of the different medications commonly used to treat Fibromyalgia.

Seroquel: the real name is Quetiapine and is a medication used for schizophrenia and bi-polar disorders. Therefore, it is a very strong anti-psychotic med. It is being used off label as a med for depression, however this is a travesty, and a real example of making as much money as you can on a med. The marketing is more intense as Patents are running out. It is now being prescribed for PTSD and fibro depression, among other conditions.

Astra Zeneca, one of the manufacturers has been sued by the U.S. government over the marketing of Quetiapine. A $520 million settlement was reached on October 29, 2009. Several American soldiers and veterans have died while taking Seroquel for PTSD. Multiple lawsuits have been filed in relation to Quetiapine’s side-effects, in particular, diabetes.

This med is also being used as a recreational drug due to it’s strong effects and goes under the street name of Suzie-Q or Snoozeberries.

The fact of the matter is that this is a dangerous medication.

Side effects Include:

  • very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors;
  • feeling like you might pass out;
  • jerky muscle movements you cannot control, trouble swallowing, problems with speech;
  • blurred vision, eye pain, or seeing halos around lights;
  • increased thirst and urination, excessive hunger, fruity breath odor, weakness, nausea and vomiting;
  • fever, chills, body aches, flu symptoms; or

  • white patches or sores inside your mouth or on your lips.
  • dizziness, drowsiness, tired feeling;
  • dry mouth, sore throat;
  • nausea, vomiting;
  • stomach pain, upset stomach, constipation;
  • increased appetite;
  • breast swelling or discharge;
  • missed menstrual periods; or
  • weight gain.

You must be especially careful with Seroquel if you have:

  • Liver or kidney disease;
  • heart disease, high blood pressure, heart rhythm problems;
  • a history of heart attack or stroke;
  • a history of low white blood cell (WBC) counts;
  • a thyroid disorder;
  • seizures or epilepsy;
  • cataracts;
  • high cholesterol or triglycerides;
  • a personal or family history of diabetes; or
  • trouble swallowing.

Seroquel has been linked to congestive heart failure, so it is essential that you take care with this medication.

Klonopin: The real name Clonazepam and is used for anxiety and panic disorders, though it is also used for seizures and epilepsy. It is marketed by Roche. It tends to be a fast acting medication in that it works very fast, however it’s main drawback is drowsiness and cognitive impairment (a nice name for a foggy mind). after stopping this med, the mind side effects can last for up to six months and there is a question as to whether it is possible to regain all the cognitive functions (clear mind, good memory etc). It is also now being used for Restless Leg Syndrome, though at this time, there are no clear studies to support it’s use.

Side effects include:

Drowsiness;

Ataxia (gross lack of muscle coordination);

Coma;

Abnormal Eye Movements;

Headache;

Respiratory Depression;

Slurred Speech;

Tremors;

Vertigo;

Depression;

Amnesia;

Hallucinations;

Insomnia;

Chest Congestion;

Heart Palpitations;

Muscle Weakness;

Muscle Pain;

Hair Loss and many many others!

Klonopin should not be used when pregnant as there is some evidence of Birth defects, and it should not be used when nursing.

You must not stop this med “Cold Turkey” as it can lead to severe withdrawal effects. This is definitely one medication you want to be very careful about, make sure you understand all the ramifications and take as much time as necessary with your doctor so you fully understand this.

Neurontin: Real name is Gabapentin, it was originally marketed for use with seizures and later okay-ed for neurological pain such as shingles and diabetic nerve pain. It is also used intravenously as a treatment for addiction to methamphetamine, cocaine and opiates (Heroin, Morphine etc). It has been used for Fibromyalgic pain but has been replaced recently by Lyrica, which is a similar medicine. It’s use for Fibromyalgia was off label (meaning not originally intended and tested for this). It is in generic form and marketed by different pharmaceutical companies.

Neurontin has also been used as an anti-anxiety medication but studies have shown no usefulness for this med.

Gabapentin has been associated with an increased risk of suicide and  or violent events, and all prescriptions must now carry a warning to that effect. Neurontin is most probably unsafe if you have kidney, liver and or heart disease. You must speak with your doctor and have blood and urine tests regularly. This is essential.

Side Effects:

  • increased risk of seizures;
  • fever, chills, body aches, flu symptoms;
  • swelling of your ankles or feet;
  • confusion;
  • rapid back and forth movement of your eyes;

  • easy bruising.
  • changes in behavior;
  • memory problems;
  • trouble concentrating; or
  • acting restless, hostile, or aggressive.
  • dizziness, drowsiness, weakness, tired feeling;
  • nausea, diarrhea, constipation;
  • blurred vision;
  • headache;
  • breast swelling;
  • dry mouth; or
  • loss of balance or coordination.

This is not a complete list.

You should be very careful when taking Hydrocodone (Vicodin, Lortab etc), Morphine or any opiates as they will interact with Neurontin. Any moodiness, anxiety abnormal behavior and hostility should be immediately reported to your doctor, of if he/she is not available, you should get to an emergency room.

More on Fibro Meds to come but Friday’s blog is a nice change of Pace.

Is there a Link between Chronic Fatigue Syndrome and the XMRV Virus? No More!

I thought I would spend some time speaking about a few different health issues that interest me and might interest you.

1 I thought this would be interesting information for those suffering from CFS as there has been much information over the past years about the possible link between the XMRV virus and CFS. This has just been disproved.

Two studies, which appeared in Science Magazine (a well known and highly regard peer reviewed weekly journal) have shown that this connection arose from tainted laboratory compounds. It appears that in earlier experiments, the lab reagents and cell lines were contaminated with the XMRV virus to begin with. One of the teams also found no evidence of the XMRV in the blood of CFS sufferers. Therefore at this point, the cause of Chronic Fatigue Syndrome remains still unknown.

2 It appears that the next generation of antidepressant medications has been discovered.

The problem with the current crop of antidepressant medication sis that they can take from weeks to months before you feel the effects. This might no be poised for change. Ketamine, which is an anesthetic, and usually found in operating rooms, in very low doses will work against depression in as little as 15 minutes.

Mice receiving a shot of Ketamine showed dramatic improvement in minutes and the reduced depression lasted for a week.

In high doses, Ketamine can render a person unconscious, it is known on the street as Special K for it’s euphoric and hallucinatory effects. However in a much lowered dose, these effect do not occur. Apparently Ketamine produces proteins, whose lack are related to depression. There have been several preliminary small trials with people and the results have been fast and dramatic. The nice thing is that this drug opens up the possibility of depression having a totally different physiological mechanism from what is currently believed. The fact is that with the many anti-depressant meds on the market, scientists and Doctors have no clue as to how they work. There are theories, but no facts. One of the problems with the current group of anti-depressant meds is that what works for one might very well not work for someone else. The other problem is that these meds can take weeks to months to start working. These new meds are still years away, but they apparently work well and there are no side effects. Time will tell.

3 Olive Oil may lower the risk of Strokes.

In a study in France, it was reported that people who consume olive oil in large amounts, either for cooking or in salads are less vulnerable (41% less)  to stroke, as compared to people who don’t. This was published in the June 15, 2011 Journal of Neurology. 7,600 people were followed over 5 years, so it is a large enough sample to be very valid.

4 Heart tissue may be able to regenerate after all!

Stem cells used in an outside layer of heart muscles may replace the number of cells damaged due to heart attacks. Though this is very preliminary news, the implications are dramatic as heart disease is the number one killer among people.The work was done at the British Heart Foundation in London and published in the June 8, 2011 issue of Nature (a prestigious science journal). The lead scientist was Dr. Paul Riley.

5 Chemicals Linked to Children’s Lower IQs.

Children exposed to  toxic pesticides while in utero (in the uterus) have been show to have lower IQs than children with no exposure.The pass through the placenta and interfere with compounds in the brain. These studies appeared in the April 21 Environmental Health Perspectives (a highly respected peer reviewed journal). It is show that every one point drop in IQ will lead to loss in earnings over the person’s lifetime. Time to start taking such companies as Monsanto to task!

6 Cell phones may interfere with the bacteria in our bodies,

Cell phones may upset the delicate balance of bacteria in our bodies of which we depend. The date is just starting to come in, but we have a symbiotic relationship with these micro-organisms and depend on them for a number of things, one of which is to keep yeast in our bodies in check. These studies were done at the University of Houston.

Extra!

I usually don’t editorialize but I was driving home today and listening to a discussion of obesity, on my local Public Broadcasting Station. The speakers being interviewed were two so called, experts from Harvard University. The basis of discussion centered around getting children to eat more fruits and vegetables and exercise more. They felt that this was the solution for the societal epidemic of obesity. I listened to the entire program and was shocked at the superficiality of the discussion. They just did not talk about some of the real causes, their basic argument being that eating better and more exercise would stop this problem. Perhaps on the surface, this sounds good, but wait!

What about artificial sweeteners in food such as High Fructose Corn Syrup(now called Corn Sugar), Splenda, Aspertame  which is shown to cause weight gain and other health problems?

What about the tons of preservatives which interfere with the brain’s receptors so you are not aware that you are “full” and continue to eat?

What about the genetically modified vegetables, which are banned in many countries, due to the side effects?

How about the television commercials which are geared to children to get them to want to eat fast/junk food? Now I realize that it is the parents responsibility to monitor children and what they watch as well as what they eat. The problem lies in that in today’s economic climate, many times both parents have to work, just to make ends meet. Many times there is a nanny or baby sitter or day care for part of the day.

My question is, why hadn’t some of these issues been addressed by the so called experts? It is pretty well accepted that about 90% of illnesses we deal with have lifestyle causes. Foods, environment, air pollution, bad habits etc. when will these experts wake up?!

I will be writing in depth on this issue next week in a number of blog posts. This Wednesday’s post will be more on fibro meds or (the good the bad and the ugly), Friday will be a nice surprise.

Fibromyalgia Drugs Part 3

I’d like to discuss some other medications that are commonly prescribed for patients with Fibromyalgia. I’m doing this not to get you depressed, but because I feel that education is important the the more educated you are the better choices you will make.

Tramadol:  It Is known by it’s trade names Ultram and Tramal and was created in the 1970’s, therefore it is manufactured by different companies now. Tramadol is a central nervous system acting opioid and it is used to treat moderate to severe pain. In reality it is a synthetic version of codeine.

Some of the side effects:

  • agitation, hallucinations, fever, fast heart rate, overactive reflexes, nausea, vomiting, diarrhea, loss of coordination, fainting;
  • seizure (convulsions);
  • a red, blistering, peeling skin rash; or
  • shallow breathing, weak pulse.
  • dizziness, spinning sensation;
  • constipation, upset stomach;
  • headache;
  • drowsiness; or
  • feeling nervous or anxious

Tramadol should not be taken when you are using:

  • alcohol or street drugs;
  • narcotic pain medicine;
  • sedatives or tranquilizers (such as Valium);
  • medicine for depression or anxiety; or
  • medicine for mental illness (such as bipolar disorder, schizophrenia)

Tramadol can cause seizures, thus if you have a history of this, Tramadol is not for you. Your Doctor should not prescribe this if you have a history of kidney and or liver disease, stomach disorders or if you have thoughts of suicide. As with most most strong medications, blood and urine tests are not only important but should be mandatory. Remind your prescribing doctor of this and insist if he/she is a bit lax. Lastly, as with all opiates, Tramadol is addicting and never stop cold turkey!

Ibuprofen: Also know as Motrin, Nuprin, Advil and 50 or more other names across the world. Ibuprofen has a very interesting history. Though this can be purchased over the counter, I feel it is important to speak about this med. The point is that just because something can be purchased without a prescription, does not mean that it is a safe med or is safer than a prescription only drug.

Ibuprofen first became available in the U.K. in the late 60’s and in the U.S. in the early seventies as a non-steroidal anti-inflammatory drug. In other words, unlike Cortisone or Prednisone which is anti-inflammatory but a steroid, Ibuprofen is not a steroid. (the word steroid has a negative connotation, but in reality, steroids do have their place.) It became an over the counter medication in the mid 80’s. My own opinion is that this was done to make it more available to the public after the patents expired. Thus the motive was monetary, not to help more people.

Ibuprofen basically works by reducing hormones which cause or increase inflammation, thus it brings down pain which is almost synonymous with inflammation. AH but here is the rub. With Fibromyalgia pain is due to a hyperactive nervous system causing the pain nerves to fire. This is one of the very few cases where inflammation is not causing the pain. This is why Ibuprofen most times won’t even touch the pain a Fibro person is suffering with.

Ibuprofen is meant to be taken for 7 to 10 days, 3 times a day as it needs to build up in the blood. After 10 days you stop. However the problem is that people take it daily or whenever they have a pain or a headache, believing that it is totally safe, this just is not true.

Some Side Effects:

Ibuprofen may  cause serious effects on the stomach or intestines, including bleeding or perforation (forming of a hole). These conditions can be fatal and can occur without warning while you are taking ibuprofen, especially in older adults.

Ibuprofen is also very hard on the kidneys and preliminary studies are just coming out showing links between ibuprofen use and an increase in kidney dialysis. It is also not safe to take this med if you have asthma, kidney and or liver disease, stomach diseases, a history of heart problems and stroke, blood clots, congestive heart failure or if you smoke.

If your Doctor has you taking this med on a longer term basis, once again, blood and urine tests are a must.

Topamax: The real name being Topiramate, Topamax is the trade name and is produced by Ortho-McNeil Neuologics and Noramco. These are both divisions of Johnson and Johnson (You know, the company that also makes Band-aids, Baby products, Listerine and Splenda).

Topamax is a seizure medication (originally produced to treat children with epilepsy) and is used off label for migraines, nerve pain among other symptoms. Off label means not being originally developed for these conditions.On May 21, 2010, Ortho-McNeil plead guilty and was fined 14 million dollars by the FDA for promoting Topamax to treat psychiatric disorders, without applying for any approval and there was no data from any well-controlled clinical trial to demonstrate that Topamax was safe and effective to treat any psychiatric conditions.

Side effects of Topamax include:

  • sudden vision loss, pain around or behind your eyes;
  • dry mouth, increased thirst, drowsiness, decreased sweating, increased body temperature, and hot, dry skin;

  • slowed thinking, memory problems, trouble concentrating, problems with speech or balance;
  • confusion, mood changes, unusual behavior, thoughts of suicide or hurting yourself;
  • vomiting, loss of appetite, tired feeling, irregular heartbeats, feeling like you might pass out; or
  • severe pain in your side or lower back, painful or difficult urination.
  • mild dizziness, feeling nervous;
  • numbness or tingly feeling;
  • diarrhea,

  • change in your sense of taste; or
  • cold symptoms such as stuffy nose, sneezing, sore throat.

Before taking Topamax, tell your doctor if you have a history of kidney disease or kidneys stones, asthma, glaucoma, osteoporosis, a history of depression and or suicidal thoughts. Topamax should not be used if you are pregnant as it has shown to lead to birth defects. You must also not use this medication if you are breastfeeding.

Lastly, Topamax side effects can cause increase in Fibromyalgia symptoms like difficulty thinking (fog), so this is another case of taking one med for Fibromyalgia which might make Fibromyalgia worse. Another example of damned if you do and damned if you don’t. sometimes it seems you just can’t win!

Monday: Odds and Ends that might interest you. Also I editorialize a bit.

10 Things not to Say to Someone with Fibro by Heather Johnson-Coleman

I ran across the following on a Fibromyalgia blog and it really hit home with me. I have heard most of these… and while I know that they are from well-meaning people, it’s frustrating to not have people understand what I am really feeling and going through…

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 am 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 like someone pulled your plug, cutting off 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 the 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 diagnoses

 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 to treat 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 that 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 come kind of “natural” supplement  being sold through some kind of 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 would know there was an end to the pain.” I rarely say that though. Of course I am 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 am 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 are 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 would 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.

 2. But you don’t look sick

 This comment puts the FM patient between the proverbial rock and a 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.

 

Taa 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 could 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 their is a problem with how my brain processes pain signals.” Enough said.

 I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can’t get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship will be better for it.

Next Blog Entry on Friday, More info on Common Fibromyalgia Meds

Fibromyalgia Drugs Part 2

Lets spend some more time speaking about more drugs commonly used in treating Fibromyalgia.

Amitriptaline – Many if not most with Fibromyalgia have difficulty either sleeping, getting to sleep or staying asleep. Chances are, at some point you’ve been prescribed Amitriptaline. So what is it?

Amitriptaline is a tricyclic antidepressant medication. (Tricyclic refers to the molecular structure) and it’s trade name most commonly are Elavil and Endep. It is commonly used for depressive disorders, though not as commonly as in the past as the SSRI’s (Prozac, Paxil etc) are a newer type of antidepressant meds.. It is sold by Merck and is sometimes used for insomnia. The British National Formulary has stated that it is a dangerous med in overdose situations and recommends it not be used for depression.

So what are the side effects?

  • chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;

  • sudden numbness or weakness, especially on one side of the body;
  • sudden severe headache, confusion, problems with vision, speech, or balance;
  • pounding heartbeats or fluttering in your chest;
  • feeling like you might pass out;
  • confusion, hallucinations, seizures (convulsions);
  • restless muscle movements in your eyes, tongue, jaw, or neck, uncontrollable shaking or tremor;
  • extreme thirst with headache, nausea, vomiting, and weakness;
  • numbness, burning pain, or tingly feeling;
  • easy bruising, unusual bleeding (nose, mouth, vagina, or rectum), purple or red pinpoint spots under your skin;
  • skin rash, bruising, severe tingling, numbness, pain, muscle weakness;
  • urinating less than usual or not at all.
  • nausea, vomiting, constipation, diarrhea, loss of appetite;
  • dry mouth, unpleasant taste;
  • feeling dizzy, drowsy, or tired;
  • trouble concentrating;
  • nightmares;
  • blurred vision, headache, ringing in your ears;
  • breast swelling (in men or women); or
  • decreased sex drive, impotence, or difficulty having an orgasm.

Note that you should be especially careful when taking amitriptyline if you have a history of heart problems, glaucoma, diabetes or an overactive thyroid.

Lortab: Opioids are a class of compounds that elicit analgesic (pain killing) effects in humans and other animals by binding to the opioid receptors within the central nervous system. Lortab used for moderate pain and is Hydrocodon (Vicodin) and Acetaminophen (Called Paracetamol outside the U.S.) Acetaminophen is Tylenol. Hydrocodone is a narcotic pain reliever. It is in the same family of Oxycontin, Morphine and Codeine. There is a large market for these meds among drug abusers as they produce a high and are highly addictive. Lortab is effective for pain in some people, but not all. Fibromyalgia people tend to have different pain mechanisms and so you might not find that it works for you. This med is manufactured by many different pharmaceutical companies.

Some side effects (but not all) include:

Blurred Vision;

Constipation;

Difficulty breathing;

Dizziness;

Drowsiness;

Flushing;

Light headedness;

Mental Changes;

Nausea;

Severe allergic reactions (rash, hives itching, tightness in the chest);

Anxiety;

Loss of hearing.

Lortab may harm the liver (due to Acetaminophen and the Narcotic) as all meds have to be detoxified by the liver. It should never be used with Alcohol and frequent blood and urine tests are very important, though many times neglected by Doctors. If you are prone to substance abuse, you must also not use Lortab! Lortab also reduces Testosterone levels which is reduced to begin with in people with Fibromyalgia. Long term use can lead to Osteoporosis.

Ambien: Is a sleep medication whose real name is Zolpidem.It is produced by many different pharmaceutical companies world wide. It is meant for short term use, not long term. (2 to 6 weeks maximum!) Interestingly, it has shown to help initiate sleep but not maintain it.

Side effects include:

  • Nausea
  • Vomiting
  • amnesia
  • Hallucinations
  • Delusions
  • Altered thought patterns
  • Poor motor coordination
  • Euphoria
  • Increased appetite
  • Decreased Libido
  • Impaired judgment and reasoning
  • Uninhibited extroversion in social or interpersonal settings
  • Increased impulsivity
  • Headaches
  • Short term memory loss

Note: when you stop this med, you’ll probably have rebound insomnia, which means the insomnia will return probably worse than originally experienced.

There have been reports of sleepwalking, binge eating even driving while asleep and unaware. Probably the most famous case was the Kennedy son who was stopped for a traffic ticket while driving when asleep. The person sleepwalking will appear totally awake and be able to do normal activities, and carry on conversations, even go to work. Hangover effects will commonly appear the next day.

When going off this medication, you must slowly wean yourself off. Never Cold Turkey!

Effects of this medication tend to be stronger in Senior citizens so be aware of this. Lastly, this medication tends to increase gastric reflux problems, which again is a common symptom in Fibromyalgia, so this is a case of treating one symptom but creating other symptoms and making an existing Fibro symptom worse. It’s like “your damned if you do and you’re damned if you don’t”. Oh well.

Next post on Wednesday will be a nice surprise!

Fibromyalgia Symptoms 101 Part 5

I’d like to continue speaking about some of the different symptoms of Fibromyalgia.

13 Low Sex Drive: Many with Fibromyalgia deal with low or loss of libido Some believe that it’s just due to age or that they are in too much pain to think of their sex drive. Others, just don’t think about sex. However, there is a bit more to the story.

Why the Low Sex Drive? DHEA (dehydroepiandrosterone  whew!) is a natural hormone produced by the Adrenal glands. If you’ll remember the two Adrenal glands are those triangular small glands that live atop the kidneys. One of the cardinal signs of Fibromyalgia is disruption and malfunction of the Adrenal glands. Now DHEA is a precursor hormone for Testosterone. (Yes, men and women both produce Testosterone.) Testosterone is important and controls your sex drive. When the Adrenals are not producing enough DHEA, you are producing too little testosterone, thus decreased Libido.Now, the fact is that it might not be pleasant  yet, we can all live without a sex drive, however the lack or decrease in testosterone has other more serious effects. Muscle loss is one effect and perhaps more importantly is calcium being leached from the bones possibly leading to osteoporosis. Decreased mental performance is also an effect of low testosterone. The hormone system (endocrine) is a bit more complex, but this should give you an idea.

14 Restless Leg Syndrome: This is that urge to constantly move the legs. Perhaps when you’re sitting, your leg keeps bouncing up and down. They sometimes constantly seem to be in motion and don’t stop.

So what is Causing Restless Leg Syndrome? This is a controversial topic because many believe that Restless Leg Syndrome was unknown before the widespread use of Anti-Depressant medications which can lead to these symptoms. (specifically serotonin and norepinephrin re-uptake inhibitors i,e, Prozac, Paxil, Wellbutrin, Cymbalta etc) Others believe that Restless Leg Syndrome is a “made up illness” after some Pharmaceutical companies were about to have their patents expire on meds used for Parkinson’s Disease. This was a way of retaining exclusivity for another 17 years and charge higher prices. Still many other scientists and Docs do believe that this is a real illness with it’s own mechanism of pathology. The consensus is still out, but in regards to Fibromyalgia, things are a bit different. Basically, with Fibromyalgia, you are secreting so much adrenalin that it is very difficult to sit still. When lying in bed, you might have the urge to constantly move the arms and or legs, again due to so much adrenalin. Again, the Jury is out whether Restless Leg syndrome really does exist, but in the case of Fibromyalgia, it is once again a symptom of an overactive nervous system.


15 Personality Changes:
Have you been moody, have sharp mood shifts, snap at others for no reason, feel irritable have difficulty relating to people or even to family members. Welcome to the Fibromyalgia world, you are certainly not alone!

I was such a nice person and now I’m a monster, what is going on? There are a number of reasons for the personality changes. Lets try to cover as many as we can. First, you are suffering from a chronic illness and this in itself is enough to make anybody moody and irritable. Going from Doctor to Doctor trying to find answers is extremely frustrating. Second, Fibromyalgia causes an increased secretion of Adrenalin which interferes with brain receptors leading to not only Fog and Depression, but changes in your personality. You will feel more agitated, have lower tolerance for mundane things and lose patience easily, thanks to increased Adrenalin. Third You might be taking certain medications which would have an effect on your personality. If you are taking Pain meds such as Vicodin or Using a Morphine Patch, by the time the drug begins to wear off, you begin to experience some withdrawal which is characterized by moodiness, and irritably, among other symptoms. Same for Valium, Atavan or other tranquilizers. In fact most meds will cause some time of personality change, and fibro meds tend to be very strong. Fourth, you are sleep deprived and this also is enough to cause personality changes. There are probably more reasons that are involved with your emotional state and how relationships are being effected and this we will leave for another blog.

Next: More Info on Fibromyalgia Drugs.

Fibromayalgia Drugs Part 1

I’d like to take a break from Fibromyalgia symptoms today and speak a bit about the Fibromyalgia drugs on the market. Please keep in mind that Pharmaceutical companies are businesses whose job is to sell meds.

Lyrica: This is the med you see constantly advertised on television. In fact these days, it has almost become synonymous with Fibromyalgia. So what is Lyrica?

Lyrica is a trade name for Pregabalin, an anti-seizure medication. It is marketed by Pfizer. When the drug was filed with the FDA, it was written up as a help for diabetic pain, neuralgia, epilepsy and Fibromyalgia. Lyrica is one of four drugs which a subsidiary of Pfizer in 2009 pleaded guilty to misbranding “with the intent to defraud or mislead”. Pfizer agreed to pay $2.3 billion  in settlement. Usually you would start on low doses and the effects are supposed to be felt in approximately one week. It appears to help some people, however many others report a whole plethora of side effects causing them to discontinue it’s use. One thing that is important is that if you have been taking Lyrica for a longer period of time, it is essential to not abruptly stop as it can lead to many withdrawal symptoms, including seizures.

Lyrica should not be taken if you have kidney disease, diabetes, congestive heart failure, depression with suicidal thoughts  or bleeding disorders.

Commonly reported side effects are

  • muscle pain, weakness, or tenderness (especially if you also have a fever and feel tired);
  • easy bruising or bleeding; or
  • swelling in your hands or feet, rapid weight gain.
  • dizziness or drowsiness, anxiety;
  • loss of balance or coordination;
  • problems with memory or concentration;
  • dry mouth;
  • skin rash;
  • constipation, stomach pain;
  • increased appetite; or
  • joint or muscle pain.

Cymbalta: This is probably the second most common drug you see advertised for Fibromyalgia. Cymbalta is the trade name and is produced by Ely Lilly. It’s real name is Duloxetine.

Cymbalta is a serotonin-nonepinephrine re-uptake inhibitor, meaning that it is an anti-depressant medication. It was marketed at one time for urinary incontinence, but failed to show any improvement and was not okay-ed by the FDA. It sometimes will help those with nerve pain and Fibromyalgia, but others cannot tolerate it and it’s side effects.

Side effects include:

  • Nausea
  • Dry mouth
  • Headaches
  • Drowsiness
  • Fatigue
  • Dizziness
  • Insomnia
  • Constipation
  • Diarrhea
  • Loss of appetite
  • Sweating
  • Abdominal pain (stomach pain)
  • Vomiting
  • Sore throat or runny nose
  • A decreased sex drive 
  • Upper respiratory tract infection
  • Coughing
  • Shakiness (tremors)
  • Muscle pain
  • Sexual side effects, including ejaculation problems, a decreased sex drive (libido), and orgasm problems 
  • Blurred vision
  • Anxiety or agitation
  • Weight loss 
  • Hot flashes
  • Yawning
  • Indigestion or Heartburn
  • Muscle spasms
  • The Flu
  • Abnormal dreams.

Again, if for any reason you decide to stop using Cymbalta, you must gradually stop, no “cold turkeyor you will experience withdrawal symptoms which can include irritability, agitation, dizziness, sensory disturbances,anxiety, confusion, headache, lethargy and possible seizures. You must speak to your doctor when stopping this med.

Savella: The new med on the block, it is sold by Cypress Bioscience and it’s real name is Milnacipran. Savella is like Cymbalta in that it is a serotonin-nonepinephrine re-uptake inhibitor, thus it is an anti-depressant medication. Though it might be sold in other countries, Milnacipran has been only okay-ed in the United States for treatment of Fibromyalgia. As with most Fibromyalgia medications, some people will see some improvement while many others have to stop due to the side effects.

Side effects include:

  • pounding heartbeats or fluttering in your chest;
  • painful or difficult urination;
  • easy bruising or bleeding, nosebleeds, bloody or tarry stools, coughing up blood;
  • severe weakness, seizure (convulsions);
  • chills or goose bumps, memory problems, trouble concentrating,
  • agitation, hallucinations, fast heart rate, overactive reflexes, nausea, vomiting, diarrhea, loss of coordination, fainting;
  • very stiff (rigid) muscles, high fever, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
  • high blood pressure (severe headache, blurred vision, buzzing in your ears, chest pain, shortness of breath, uneven heartbeats); or
  • stomach pain, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).
  • Headache;
  • dizziness, drowsiness, tired feeling;
  • swelling in your hands or feet;
  • constipation, upset stomach, bloating;
  • dry mouth;
  • sleep problems (insomnia);
  • hot flashes, sweating;
  • weight changes; or
  • decreased sex drive, impotence, or difficulty having an orgasm.

You must be careful using this med if you have high blood pressure, liver or kidney disease, glaucoma,  a history of suicidal thoughts, or are allergic to aspirin. This is not a complete list, but Blood and Urine Tests should be done regularly. In fact, with all of the meds mentioned in this blog, it is imperative to have regular blood and urine workups.

As with almost all meds, you must not stop “cold turkey” but have a Doctor help to wean you off, otherwise you might have withdrawal effects.

More info on Fibro and other Meds to come on Monday, Friday will cover more Fibromyalgia symptoms.


Fibromyalgia symptoms 101 Part 4

I’d like to continue with the description and explanation of Fibromyalgia Symptoms. Remember, that Fibro causes an entire universe of symptoms, but all can be traced back to an over-active nervous system.

10 Carpel Tunnel Syndrome. This is usually that pain in the wrist which can extend into the fingers or up the arm. It can become extremely painful just to move the fingers or wrist. It can also manifest as numbness in the hands and fingers. Many times, you’ll try meds, physical therapy and ultimately surgery. Sometimes the symptoms will than disappear, only to return months later. Other times the surgery fails. Occasionally the symptoms permanently disappears.

So what is going on? Though Carpel tunnel syndrome may at times be caused by a membrane in the wrist putting pressure on the median nerve (which runs from the neck, down to the hand and is part of the Brachial plexus (technical name for the bunch of nerves leaving the neck). However many times, this is putting the horse before the cart. As I had said, the median nerve originates in the lower neck. As we age, we develop degeneration in our vertebra and discs. Note that this is a sign of aging (usually due to repeated traumas small or large, auto accidents etc). The great majority of us have this as we age, however many times we are told that we have arthritis in the neck. Just the word arthritis can be so scary, but arthritis really means:  arthra = joint and itis = inflammation. Thus inflamed joint.  Signs of degeneration are decreased disc spaces and spurs which can put pressure on the nerve which runs down the arm, causing Carpel Tunnel Symptoms. One of the rules of Fibromyalgia is that any normal ache or pain you might have is intensified  dramatically due to the over-active nervous system, thus the sharp wrist and finger pain.

11 Horribly painful feet. this is seen quite commonly with people who have Fibromyalgia. walking feels like you’re stepping on shards of glass.In fact walking can become totally unbearable. You try wearing sandals, changing your gait, but the pain remains. You might have seen your Ortho or Podiatrist who diagnosed Plantar Fasciitis. You might have been given injections of cortisone in the feet (very painful) or given orthotics to wear in your shoes. Nothing helps. The reality is that this is another symptom of Fibromyalgia.

It should be noted that besides this horrendous pain, you might also have iching that does not go away. You constant pull you feet against the sheets in the bed, or you scratch, but it seems to make the problem worse. Lastly, you might experience burning in the feet or feet which are ice cold.

Why the foot pain? Remember that the mechanism of Fibromyalgia is an a nervous system that is continuously on overdrive. In this case the pain nerves which fun from the low back and travel down to the feet are constantly firing, thus causing the extreme pain. In the case of burning and or itching, the sensation parts of the nerves are involved thus leading to these symptoms.

I’ve had patients actually tell me that they’ve worn out bed sheets by constantly rubbing their feet against the sheets.

12 Jaw Pain: One of the things I hear quite often is: “I have TMJ”. First to clarify, we all have two TMJ joints (tempero-mandibular joints). Interestingly, they are the only joints, besides the vertebral joints, which have discs. They are the “jaw” joints It is common to hear people speak about pain in these joints, from mild to pretty severe. Chewing food can become a nightmare and just talking becomes very difficult. You might have seen the dentist, tried wearing splints (quite annoying), but the pain still remains. The pain can also come and go, when you least expect it.

So why the Jaw Pain? A bit of simple anatomy, Muscles exist to move bones. Consequently muscles move the Jaw joints. As Fibromyalgia affects muscles, it stands to reason that the Jaw joints (TMJ) joints would sometimes also be affected, and this is the case. If you have pain in these joints, you might try rubbing an ice cube on the joint for 10 to 15 minutes and eat very soft food for a couple of days. sometimes this will help to minimize the pain. If you’re lucky, it will go away. Do be aware that it can and many times will return.

Next: More Fibromyalgia Symptoms (the list goes on and on!)