Well if it’s June, it must be summer! So is that how it looks where you live? Believe it or not we will be right here in hot & humid Livingston, Texas. There are several people who live here at Rainbow’s End year round, but most who still travel start heading north in April or May to avoid the hot summer. We’ve never been here this late in the summer ourselves, but it will be fun to see just what it’s like here in June. Rest assured we will not be here much longer than the end of June. We do have friends from Australia who will be flying into Houston the end of June and plan to visit us the first week of July. She’s one of my stamping, card-making buddies from almost 20 years back that we met for the first time in Puyallup, WA at a stamp convention.
As soon as they are on their way with their travels we will be headed for Montana. July 25th I’m taking a special art class in Helena, MT. A total of two classes both held on the same day, busy day for me. After that we will amble up to Dagmar, MT (north east corner of the state) to check on the farm and the recent oil wells that are springing up nearby. It will also be time for Jerry’s 60th high school reunion in Montana, and Carolyn’s 50th in Illinois, but we took a vote and will not be attending either. Jerry has gone to a few of his over the years, but I have never made it to one. I’m just not into high school reunions, although have remained close with a few friends from those days. I enjoyed high school but believe it or not, I moved on over the years.
We have established ourselves with new doctors in Texas now and so far I believe we have chosen well. We are using a primary care doctor who has quite a history in the medical field, starting out as an RN, moving thru the title of Physician’s Assistant, and back to school to become a full fledged physician. Jerry has picked a new urologist who has found a problem or two and had surgery to remove a growth in his urinary tract near the bladder. He’s done well but is still building back up his energy.
I found a good podiatrist to check out a couple of problem toes. And fix them he did, I now have two de-clawed toes…that’s the way cat-owners talk. He removed two toenails on my left foot and he and his assistant did an admirable job. The procedure itself was totally painless, and they numbed the toes so well that it was 40 hours before they woke up and let me know they were embarrassed and hurt over being naked. Toes can really scream when they are angry with you and caused a couple of rough days for me.
Unless something new pops up we are looking forward to being back on the road at the end of this month. We only know that we will be in Montana the end of July and then in Indiana in September for one of our camping Escapades that is held each year. The weeks in between are an unknown at this time. If we’re near you, maybe we can share a glass of ice tea. We hope you find some good health in the meantime.
J & C
THE MORE THINGS CHANGE….?
Do they really change ? Or are we finding out that most things stay the same? Probably a little bit of both and a lot depends on how we look at things in general. I know the way I thought about things 40 years ago, or even 20 years ago have made some drastic changes. As I’ve aged, and as I’ve experienced new people, places, & ways of doing things, I’ve had a much different mindset than I’d ever envisioned. It really doesn’t mean that I was wrong in the first place or that I’m right now, I just know what’s right for me at this time and place in my life. Can you understand what I mean by all of that?
I woke up early this morning thinking about how little what we know about lupus has changed over the years…or has it? I was looking thru a 100 year old medical book a few years back and was astonished to learn that other than the use of corticosteroids in aiding lupus symptoms, not much had changed. Yes, there is the possibility that we will soon have a new pharmaceutical on the market to help control some of lupus’s problems, and yes, we have started isolating genes that contribute to our understanding of what lupus is….but we still do not know what causes lupus, nor how to cure it. We hardly know how to keep it from causing serious life threatening problems.
Let’s look for a minute at what we know about Fibromyalgia. Uh, what do we know about it? When we first added Fibromyalgia to be a part of the Lupus group we thought it primarily to be a muscular-skeletal type illness that cause pain and knotted muscles. Now we are finding that most people with those symptoms actually had Myofascial illness. We use to say you had to have at least 11 of the tender points to be diagnosed with fibromyalgia and it was best to be diagnosed by a rheumatologist who was more in the know. Now I’m told that they rarely use the tender points and that primary care doctors are the main ones to work with FM. We now know that we feel pain more intensely, and that it will show up in our brain waves….so it really was all in our head in the first place! We have medications that are suppose to control it, but we still don’t know what causes it, what cures it, or what it really is.
OK now talking about changes, have WE changed the way we are coping with these chronic illnesses? If we’ve had our diagnosis for over a year, we definitely are learning a bit about coping with the flares. If we’ve had our diagnosis for many years, I’m certain we cope much better these days than we did in the beginning. It was such a relief to get a firm diagnosis, and then it was a bit scary to learn just what that diagnosis meant. With lupus we learned that it was potentially fatal, organ involvement that could lead to an earlier death. With fibromyalgia we learned that many doctors, and people in general, thought it was a title given to hypochondriacs. And truly in some cases I believe that could be true.
I know that I can almost tell in advance that I’m going to have, or am going into a flare before it hits full force. Due to how those flares have treated me in the past, I can plan on how I will cope with the current one. I have things I can do on those “down days” that will still let me feel productive but not cause me any more loss of energy. I have learned the old pace & prioritize routine, how to ask & accept help, and how to let myself have some time to grieve. Grieve? Yes, grieve…I find it sad and I get a little weepy each time I flare. I give myself permission to cry a little, and maybe even hide in bed with the covers over my head for a few hours before actually putting my coping routines into place. So I have changed over the years in dealing with the flares, but let’s face it…the illness has stayed the same.
Autoimmune type illnesses have something a bit special we have to deal with…they can attack any organ at anytime, or I should say organs. When it attacks your kidneys, it’s going to be different than when it hits the lining of the heart, or the clotting of the blood, or the swelling of the joints. Or when it hits two or three places at the same time. Sometimes, it’s those variables that cause us so much stress since we never know where it will end…and maybe it doesn’t end at all. Are the treatments we use the same or have they changed? Or have they only changed their name due to a different pharmaceutical company making the one the doctor prescribed for you?
There are some new medications out there and there are a few more going through FDA trials. But in all of the new ones I always see on the bottom line: shows very little difference in ability to help; or helped 25% more than the placebo offered. Very few of us respond in the same way when on the same medications, and often we seem to be doing a bit better when in reality we aren’t doing any better at all. We want the new medication to help, we believe that it will, the doctor prescribed it, so it must be better…”this one will make a difference”.
There are so many scams out there just waiting to grab us when we get in the desperate mode. We’ve been in this awful, painful flare up for over six months and we will try anything to give us a break. Honestly I know that you know, that anyone that says” I have the cure” is only trying to get your money. But so many of you are still trying that product, that promise, that scam. And scam it is!! I participate in an online “Leaders Support Group” and there is a clinic of sorts that is popping up here and there, offering relief and cure for fibromyalgia patients and…it only costs $6000. Now I know none of you would put out $6000 on the offer of a cure for your fibro pain. However this past week I have been reading emails from leaders who have members that put out that much money for a miracle cure…that hasn’t been found yet. Medical scams have not changed, they stay the same and ask for more $$.
We’ve talked before about learning to read our bodies. There is no course to teach you how to read your body, so please don’t pay for one that says they’ll teach you how to do that. Instead take the time each day to get in tune with your body, a few minutes here and a few minutes there is all you need. Are you head achy? Is your fatigue level up? Are you cranky? Do things annoy you today? Is your pain level the same as yesterday? Do you have pain in a new place. Take inventory of your body and don’t forget your mouth too. I’m a game player and I like to win. My favorite game now is playing Texas Hold ‘Em. I play for free chips and I also play for money. To be a good player you have to learn how to read your opponent. It’s easier if you’re sitting across the table from them than it is online. You take inventory of their habits, motions, ways of talking, etc. I want you to do the same to yourself. Not only will you be able to help yourself in advance of a flare up, you will be able to tell your doctors more accurately what is going on in your medical life. Once you can read your body you will be able to make a good change for yourself.
I believe we all change, we all grow in some way as we age and travel through life. I have always loved to read, especially mysteries but the ones I pick today are different than the ones I had when I was 20. I enjoy action movies today more than comedies, and I’d really prefer a stage play than a movie. The cards I make today are much different than the ones I made 20 years ago…my art has changed…progressed some might say. I use to love to cook, now I don’t. I use to sew & design wedding gowns along with both men & women’s clothing…now I don’t have a sewing machine. I use to be a certified beautician…now I hardly have any hair. We change and our medical needs change, even if they seem to be staying the same.
I’m finding that support groups are often different than what I expected our group to be like, and yet their main focus is all the same: educate and inform while supporting. Some are more of a social group where they can be with others who understand and that’s all they need. There are a few groups who basically support homeopathic methods, natural remedies and alternatives and/or strictly naturopathic leanings. Almost all of the groups that are represented in the “Leaders Support Group” are independent groups. Some do not like the national organizations at all as they believe them to receive too much influence & money from the big pharmaceutical companies….which just may be too true.
Systemic Lupus Erythematosus and Fibromyalgia have come a long way in the past 20 years, but have they really changed or are they pretty much still the same? I’m in remission and that is a big change for me, however I know the possibility of a flare is possible, I know lupus has no cure and no set cause…so lupus stays the same in my mind. Where are you? Have you changed or are you pretty much the same?
FIBROFOG?
You have what? Fibrofog? What in the world is fibrofog? Guess you must have Fibromyalgia to have Fibrofog. In fact I’ve never met anyone who had fibromyalgia and didn’t complain of the “fog” that was with them in one way or another; misplacing items, using wrong words, always late, poor balance, getting lost, and it goes on and on. But what exactly is fibro-fog? Do we understand it? Those of us with lupus often call it “cognitive problems”, because we often have mishaps going on in our brain and some actually have brain involvement with their lupus.
At past meetings various members have talked about such things as leaving an iron on and not even remembering why they’d turned it on. We all know how dangerous that can be especially with children or grandchildren around. I can share how one time I had turned the wrong burner on underneath the tea kettle. I couldn’t figure out why it hadn’t started whistling, and laid my hand down on the burner that was HOT! Needless to say that was a bad burn, all in circles from the electric burner on the palm of my hand. Not all foggy happenings cause bad accidents with additional pain, but they can. The ice cream may be dripping on the counter and your keys may be frozen.
Sometimes it isn’t so much the forgetfulness but you just don’t enjoy reading a book as it’s hard to keep the concentration. You don’t enjoy going to the movies or sporting events as the noise bothers you. Maybe you don’t even really enjoy visiting with people as you get easily distracted and lose the conversation. Fibrofog may be amusing sometimes, hurtful others and occasionally embarrassing. But all told, it can be extremely frustrating. Sometimes it leaves us feeling vulnerable and often our friends and family cannot understand it at all, wondering if we’re making up the name “fibrofog”. Oh, come on….who would make something like this up?
Mark Pellegrino, M.D. has written several books on fibromyalgia. Why? Because he too, has fibromyalgia and totally understands it from the inside out! One such book, Fibromyalgia: Up Close and Personal, lists the most common characteristics of fibro fog while also assuring all that it is NOT a dementia or early Alzheimer’s problem.
• Forgetfulness
• Absentmindedness
• Concentration
• Confusion
• Disorientation
• Difficulty with words
• Short-term memory loss
• Difficulty understanding what you’ve read
• Difficulty calculating simple math problems – balancing check books
• Right-left confusion
• Poor ability to give directions
• Emotionally oriented
• Irritable
• Anxiety symptoms
• Panic attacks
These various symptoms can also be true of many other illnesses also…maybe even all chronic illnesses. Fibrofog may belong to those of us with fibromyalgia, but other illnesses may have their own “FOGS”.
When I was first diagnosed with fibromyalgia I was under the impression that it was primarily a muscle-skeletal type problem that caused no known permanent damage to the body. It was ‘just’ a PAIN problem…a pain in the…? It was not well understood and was not even well believed by a large percentage of physicians. Today it is much better accepted, (although not totally by all doctors) and is known to be found in our central nervous systems (brain), not just in our muscles. We’re told that “we feel pain more severely than those without fibromyalgia”.
There are studies being done as you read this on fibromyalgia memory, distractions and problems with focusing attention, among other things dealing with why FM patients have cognitive problems. It is proven that pain itself can cause cognitive difficulties, so more than likely we can even see where our higher pain levels aggravates our fibrofog problems. It’s possible when we treat our pain levels it will in turn help our cognitive problems? I make that a question as it’s only something that I could understand as a logical statement. But often “my logic” has no scientific basis, especially since I’m not a scientist. I believe we still have much to learn about fibromyalgia itself, let alone it’s “FOG” !
So until those scientists, researchers, and physicians learn more, we need to learn to help ourselves better. Pace and Prioritize is something you’ve heard from me many times in the past 20 years, and who knows how many more times I’ll say it. Let’s look at some other ways we can cope with our fog-filled days.
When it comes to the things we do every day it would help to stay with the same routine. Always put your purse & keys in the same place; take your meds the same time; do things the same way every day to avoid those ‘dumb’ mistakes.
When doing important work avoid doing them when others are around and talking, keep the background music (noise) to a minimum.
Check lists can always help…list things step by step.
If your allergies, headaches, blood sugar levels, etc are also adding to your fog, get some help for them.
Check out the side effects on your meds to see if they are likely to cause dizziness or confusion. They may be part of the problem.
Don’t drive when your fibrofog is at it’s worst. You don’t belong on the road during those times.
Post It Notes are my lifesavers. If I need to remember something when I get up in the morning, the note goes on the bathroom mirror. When I see it, I carry it around with me until it’s taken care of.
Multi-tasking makes NO sense at all when you have fibrofog. One task at a time, one step at a time will better take care of those things that need to be finished.
Don’t forget to do some low impact exercising. It boosts blood circulation to the brain, helps relieve your stress, and lubricates those joints.
Sunscreen and sun glasses are necessary to help you make it through a day. Actually some extra bright lights may call for the glasses also.
Lack of good balance is a problem I have trouble with. Focus, focus, focus is something I have to set my mind too. Know where I am and where I’m headed. Do you remember one of those toys from the 80’s or so, called Weebles? The advertisement always said, “Weebles wobble but they don’t fall down.” I always repeat that one when I start to wobble…and I do wobble! Hopefully won’t fall down.
Breathe…breathing is another one of those things to focus on. Try some breathing exercises: breathe in to a count of six or seven, hold it to a count of 5 and then slowly release it to a count of 10. Adjust the numbers to suit you, but make the breaths as deep as possible and the release as long as possible. Do this 3 or 4 times and see if your memory is a bit better.
Carolyn says, “Listen to your body.” You will know what to do next.
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Wherever you go, no matter what the weather, always bring your own sunshine.
- Anthony J. D'Angelo
After one of our recent newsletters we received this request:
Hi, Carolyn and Jerry
As always another good newsletter! Thank you also for the beautiful card you sent acknowledging my donation. I'll try to send more in March. I do have one comment regarding the newsletter. In the article about Chronic Fatigue and the retrovirus, you mention a Dr. Judy A. Mikovits. Would it be possible to indicate what type of doctor she is? Is she a Medical Doctor (M.D.), an osteopathic physician (O.D.), a Naturopathic physician (N.D.) or a PhD? That might help verify what she is writing about.....I have a daughter who is Dr. Richards...but she is a college professor with a PhD.
Many thanks again for the cards and for doing the newsletter. I always read it cover to cover when I get it and pass it on to friends who have lupus, sjogren's, and my friend fibro. With best wishes to you both….Anne
I'm sorry as I should have had more information included in the article so am including the references on Dr. Judy Mikovits here. I had gotten the article from a copy of her talk at the International ME/CFS Conference that had been published in a newsletter for FM/ME/CFS that is done by a gal in California. And due to her speaking at this conference and being published in the 2009 Science magazine the article is getting lots of press online. Thank you so much for being such a loyal supporter of the newsletter, and I'm glad you look forward to it and are able to share it with other…Carolyn & Jerry
Dr. Judy Mikovits, is Research Director at the Whittemore Peterson Nevada CFS centre for Neuro-Immune disorders and has co-authored over 40 peer reviewed publications that address fundamental issues of viral pathogenesis, hematopoiesis and cytokine biology. Dr. Mikovits obtained her Ph.D. in Biochemistry and Molecular Biology from George Washington University.
Dr. Mikovits spent more than 20 years at the National Cancer Institute in Frederick MD where she investigated mechanisms by which retroviruses dysregulate the delicate balance of cytokines in the immune response. This work led to the discovery of the role aberrant DNA methylation plays in the pathogenesis of HIV.
Later in her career at the NCI, Dr. Mikovits directed the Lab of Antiviral Drug Mechanisms (LADM) a section of the NCI's Screening Technologies Branch in the Developmental Therapeutics Program. The LADM's mission was to identify, characterize and validate molecular targets and to develop high-throughput cell-based, genomic and epigenomic screens for the development of novel therapeutic agents for AIDS and AIDS-associated malignancies (Kaposi's sarcoma).
Dr. Mikovits served as a senior scientist at Biosource International, where she led the development of proteomic assays for the Luminex platform that is used extensively for cytokine activity assessment in therapy development. She also served as Chief Scientific Officer and VP Drug Discovery at Epigenx Biosciences, where she lead the development and commercialization of DNA methylation inhibitors for cancer therapy and of cell and array-based methylation assays for drug discovery and diagnostic development.
Formally trained as a cell biologist, molecular biologist and virologist, Dr. Mikovits has studied the immune response to retroviruses and herpes viruses including HIV, SIV, HTLVI, HERV, HHV6 and HHV8 with a special emphasis on virus host cell interactions in cells of the hematopoietic system including hematopoietic stem cells (HSC). Dr Mikovits was co-author of the "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome" research paper in October 2009 in Science magazine
Any time you have a question about an article, please ask!
People Who Have Both Lupus and Antiphospholipid Syndrome Might Have Higher Risk of Thyroid Disease
• Antithyroid antibodies in antiphospholipid syndrome: prevalence and clinical associations.
Authors: Mavragani CP, Danielides S, Zintzaras E, Vlachoyiannopoulos PG, and Moutsopoulos HM. (2009). Lupus 18: 1096-1099.
What is the topic?
The thyroid is a gland in the neck which helps the body keep order over how food and nutrients are handled and how fast people grow, gain or lose weight, how the heart beats, or how blood pressure and cholesterol levels in the blood respond to these changes. A protein called "thyroid peroxidase" helps to modify other proteins that the thyroid produces that perform all of these functions. Some people make antibodies (immune proteins) against their own thyroid peroxidase (these are called "anti-TPO"). People with anti-TPO sometimes have an underactive thyroid; this causes weight gain, fatigue, and a tendency to feel cold when other people around you do not.
The antiphospholipid syndrome is a blood clotting disorder where antibodies are made against proteins that help to control how fast or slowly the blood clots. Many people with lupus have the antiphospholipid syndrome, although it can occur without other features of lupus.
What did the researchers hope to learn?
The researchers wanted to find out if there is a connection between thyroid disease and the antiphospholipid syndrome or lupus.
Who was studied?
75 patients with antiphospholipid syndrome, 75 patients with lupus, and 75 healthy people were studied. 35 of the 75 patients who had antiphospholipid syndrome also had other features of lupus. There was no difference between the groups in terms of age, how long people had been diagnosed, or the ratio of women to men.
How was the study conducted?
Antibodies against the thyroid (anti-TPO) were measured in the blood of all the people participating in the study, and were compared among the different groups.
What did the researchers find?
Anti-TPO antibody was found more often in patients who had both antiphospholipid syndrome and lupus than in healthy people
.
What were the limitations of the study?
This was a small study. Sometimes, if a study is too small, there will be a slanting of the outcomes just from a sort of "luck of the draw." These findings are interesting, but larger studies are needed to be more sure about them. This study was also conducted by looking back in time; this is called a "retrospective study." Studies that follow patients forward in time to see what happens to them are more accurate in finding cause and effect; those are called "prospective studies." In a prospective study, you know how many patients move away or stop coming to the clinic during the time you are studying them, and you can try to track them down and find out what happened to them. When you are looking backwards, all you know is information about the people who are left at the end of the time period you are studying them; you are missing a lot of information. Also, in a prospective study, you can decide in advance exactly what information you want to study and make sure you get that information at regular intervals for all the participants. In a retrospective study, you are limited to whatever ended up, without any advanced planning, in the medical chart.
What do the results mean for you?
Patients with both antiphospholipid syndrome and lupus may be at increased risk for having thyroid antibodies. This is important to know because sometimes these antibodies can interfere with the functions of the thyroid gland and there are good treatments for this
.
Lab Tests for Lupus
Have you ever wanted to know more about your lab tests? Wondered what the numbers really meant? Well, here they are with the numbers telling you what the “norms” should be. Keep a copy of this in with your lab reports so you can keep track of where you are. AND be sure you do get a copy each time.
Blood Tests (w/ normal values) (normal values may vary from lab to lab)
• CBC - Complete Blood Count
o Red Blood Cells - men 4.6-6.2, women 4.2-5.4
Low levels are common in lupus patients due to anemia
o White Blood Cells - 4.5-11.0
Low levels are common in lupus patients
o Hemoglobin - men 8.7-11.2, women 7.4-9.9
Low levels are common in lupus patients due to anemia
o Hematocrit - men 40%-54%, women 37%-47%
Low levels are common in lupus patients due to anemia
o Mean Corpuscular Volume - 80-100
o Mean Corpuscular Hemoglobin - 28-32
o Mean Corpuscular Hemoglobin Concentration - 32-36
o Red cell Distribution Width - 1.7%-14.2%
o Platelet - 150-400
Low levels are common in lupus patients
o Neutrophils - 47%-77%
o Band Neutrophils - 0-3%
o Lymphocytes - 16%-43%
o Monocytes - 0.5%-10%
o Eosinophils - 0.3%-7%
o Basophils - 0.3%-2%
• Comprehensive Metabolic Panel
o Sodium (Na) - 135-145
o Potassium (K) - 3.5-5
o Calcium (Ca) - 9-10.5
o Chloride (Cl) - 95-103
o Carbon Dioxide - 23-29
o Glucose - 70-125
o Blood Urea Nitrogen (BUN) - 8-20
o Creatinine - 0.7-1.2
o Total Protein - 5.5-9
o Albumin - 3.5-5.5
o Total Bilirubin - 0.3-1.0
o Alkaline Phosphatase Transferase (ALP) - 38-126
o Aspartate Amino Transferase (AST) - 8-35
o Alamine Amino Transferase (ALT) - 4-36
• Urinalysis
o Color and Appearance
o Specific Gravity - 1.006-1.030
o pH - 4.6-8
o Glucose - 0
o Keytones - 0
o Protein - 0
Proteinuria can indicate nephritis
o White Blood Cells - 0
o Red Blood Cells - 0
Hematuria can indicate nephritis
o RBC or WBC casts - 0
Blood cell casts can indicate nephritis
• ESR or Sedimentation Rate - women 0-30, men 0-20
o This test measures how quickly red blood cells settle in a test tube. High rates indicate inflammation, but this is a very non-specific test, the inflammation can be anywhere in the body.
o This test is used to help monitor disease activity.
• The Antinuclear Antibody (ANA) Test - titer below 1:20 or 1:40
o 97% of Lupus patients have a positive ANA
o A positive ANA is not however proof of lupus, many other diseases and infections can cause a positive ANA, users of certain medications as well as some otherwise healthy people may also have a positive ANA.
o The titer indicates how many times the lab technician had to dilute plasma from the blood before the antinuclear antibodies are undetectable.
o The pattern of the ANA test is used to help determine which autoimmune disease it may be. more...
• Antiphospholipid Antibodies (APLs)
o These antibodies react to phospholipids as well as phospholipid-binding plasma proteins
o APLs are usually detected in three types of laboratory assays
Anticardiolipin Antibody (ACA)
Lupus Anticoagulant
Syphilis Serology - certain blood tests for syphilis may be falsely positive in Lupus patients
o A positive APL test along with the presence of arterial or venous thrombosis or thrombo-embolism or recurrent fetal deaths or thrombocytopenia is called Antiphospholipid Syndrome (APS
)
• Other Autoantibodies -
o Anti-dsDNA - an antibody specifically against double stranded DNA, these are found primarily in SLE patients
o Anti-Sm - ribonucleoproteins found in the cell nucleus, are found almost exclusively in SLE
o Anti-Ro (SS-A) and Anti-La (SS-B) - these are found in people with either lupus or Sjogren's Syndrome. Anti-Ro is strongly associated with photosensitivity.
• Complement Levels
o Complement is a blood protein that destroys bacteria as well as helps mediate inflammation.
o The most common complements are C3, C4, and CH50
o Low levels of C3 and C4 with a positive ANA lends weight to a lupus diagnosis as well as may signify active Lupus. more...
• CRP or C-reactive Protein Test - less than 10mg/liter
o A rise is this protein, that is produced by the liver, can indicate disease activity. more...
• CPK - men 55-170, women 30-135
o A rise in this muscle enzyme can indicate active Lupus
• Biopsy
o A sample of tissue from different parts of the body such as the kidneys may be taken and examined under a microscope for inflammation or scarring. This can aid in both diagnosis as well as determining the proper course of treatment.
• =============================
If you don't like something
change it;
if you can't change it,
change the way you think about it.
- Mary Engelbreit
TAKE A BREATH…BREATHE
It's amazing how inconsistently many people breathe considering that if we don't breathe at all we die. People in pain especially tend to hold their breath even though held breath diminishes blood flow thereby contributing to tense muscles and intensifying muscle spasms. Some people hold the breath "empty" after releasing air from the lungs, and some hold it "full." What this means and why we hold the breath at all is a discussion for another article. Here we will focus on breathing awareness and some specific breathing techniques to reduce pain and promote general well being.
First and foremost, be aware of your breath. Set your wristwatch alarm to beep every hour to remind you to breathe. Notice how often you are holding your breath when the alarm sounds. And when you hear the alarm, take ten seconds to focus on your breathing no matter where you are or what you are doing. Use the time you spend waiting in traffic or standing in line at the supermarket to notice your breathing. The more frequently you focus your attention on your breathing, the more fully you will breathe even when you are not paying conscious attention to your breath.
One clue that you may be holding your breath is your voice. A voice that is not well supported by the breath is constricted, thin, and possibly screechy. If you run out of air before you finish a sentence, slow down and breathe while you talk. Ask your family and friends if they notice a change in your voice as you get better at breathing while talking. Another clue that you may be restricting your breathing is the placement of your shoulders. If you find your shoulders somewhere up around your ears, you are probably holding your breath. Again, while waiting at stoplights or in bank lines, practice breathing directly into your shoulders to release the tension and drop them down where they belong.
The techniques of "breathing into" specific body parts can be quite effective in relieving muscle tension that contributes to pain. Start with your hands. Close your eyes and imagine that you are breathing through your hands, as if your hands can actually exhale and inhale. As you do this, you will find your breathing becoming deeper and more regular, and your hands will warm up as blood flow increases through them. Once you have practiced with your hands, try various other body parts, starting with the ones in which there is no pain. Then practice sending the breath directly into and through the spots where you experience pain. If your knee is injured, breathe through it. As you do this, visualize the muscles and tendons releasing and becoming soft and loose. Visualize any inflammation cooling down as you send the breath directly through the painful spot.
Start all cleansing and relaxing breaths with an exhale. A big, gulping inhale can actually create tension in the body, especially if it is not fully exhaled back out. To ensure that your breath actually facilitates release, begin by exhaling fully and allowing your lungs to fill naturally without forcing the inhale. To practice this, start by exhaling all the air from your lungs through pursed lips, making an audible blowing sound. When you have exhaled as much as you possibly can, just relax. Your lungs will accomplish the inhale on their own without any effort on your part. Try this exercise four times in succession, exhaling audibly through pursed lips and relaxing to allow the inhale to occur naturally. You will notice a rolling breath sensation as your lungs fill from the bottom to the top. When you have done this exercise four times, close your eyes and observe how much more deeply and evenly you are breathing. You will probably also noticed that you feel more relaxed.
Try a breathing meditation to calm the mind as well as relax the body. Find a comfortable position and close your eyes. In your mind, count your exhaled breaths on a cycle of three: first exhale, count 1; second exhale, count 2; third exhale, count 3; next exhale, count 1, and so on. Just focus on the breath and the counting. At first your breath may be forced or stilted, but as you continue, your breathing will become rhythmic and fluid. Notice the physical sensation of your breath as it flows through your nose or mouth. If thoughts intrude or you wander off mentally, gently bring yourself back to count 1 without judgment or criticism. Practice this simple breathing meditation for five to ten minutes two or three times a day and see what happens. Michele Gargan, PsyD
Around and About the House
• When It is true that you do not want to stand when you can sit, make it a habit to get up briefly at different intervals in order to maintain proper circulation in your legs.
• Attempt to make everyday chores a routine by doing things in the same sequence all the time. Doing this makes it less likely you may forget to do something.
• To my wife's travail the "sticky note" is my next best friend. When I think of something I must do or remember I write it down on a "sticky note" and post it where I will see it. Doing this helps avoid those times where my memory might let me down.
• Lay out personal bathroom items each in it own place. This way if something is missing or out of place leading you to forget to use it, you will notice it right away.
• When doing personal grooming complete it in stages allowing for sufficient rest periods. Always doing your grooming activity in the same sequence every day also is very helpful.
• I can't vouch for this next tip personally but it makes sense. When applying makeup try to do so while sitting down, not standing up in front of a vanity or mirror. My sister in-law seems to have a great method. She has a carry all box similar to a small fishing tackle box that holds all her makeup goodies including a mirror. This way she can take all her makeup supplies to where ever she wants to and be able to apply her makeup however she is most comfortable.
Do Not Let No Known Fibromyalgia Cure Get In Your Way!....If You Are Blessed Enough To Have A Yard You Are Responsible To Take Care Of.... Try The Following:
• Stick with "evergreen" shrubs and bedding plants. Flowering annuals tend to need more upkeep.
• Mulch your leaves with your mower. Do not waste time and energy bagging leaves. I hear that finely mulched leaves act as good fertilizer for a lawn.
• Use old leaves as cover and mulch in your bedded areas.
• Many people find ivy plants to be a bother. I find that they are green all year round and when easily cut back on regular intervals do not grow out of hand and fill in bare bedding spots nicely.
• Life is a trade off, so go ahead and use grass and weed killer spray [Edger] as necessary. It saves on all the energy you would need to expend bending, digging, pulling and edge trimming. So what if you have occasional brown spots in the lawn where you had sprayed the dandelions. Don't worry what your neighbor "the Jones" have to say or that you may be turned down for the spread in "Better Homes and Gardens" magazine.
• If you are not blessed with an automatic sprinkler system for your lawn do not worry so much about watering it. Depend on Nature. Keep some trees around for shade to help keep the grass from drying out. Keeping the lawn a bit taller then you normally would also helps keep the grass from burning. And thank goodness for the evergreens. Most evergreens including ivy are somewhat drought resistant.
When You Are Out For The Day.... Or Out Shopping....You Might Find These Ideas Useful Until That Day There Is A Fibromyalgia Cure!•
Do not be too proud to let your physician sign the papers so that you can obtain a temporary or permanent Handicap Permit.You may not need to use it all the time, but believe me, there will be days you will be glad you have one.
(I don’t know where I got these from and apologize that I don’t know who to give credit too, I think they are quite good so use what you can
• I find that some days are better than others. On good days I'll park in a parking spot other than one designated for "Handicapped", especially if it is convenient and nearby to where I am going. Sometimes doing a little bit of extra walking when up to it gives me a sense of some accomplishment.
• Know your energy peaks. Try to time your traveling and going shopping to these peak energy times.
• Avoid driving or shopping at peak shopping/traffic times. I find it personally best to go to the supermarket at 7AM when it first opens up. No Crowds! I don't have to tell you how stressful a crowded supermarket can be.
• If you return home from the grocery store exhausted just worry about putting the perishables away. If your lucky, maybe another family member can put the non-perishables away. If your not so lucky, then put them away later after you have regained back some energy and strength.
• If you have a computer available to shop on-line with and have items shipped to your door, take advantage of it, even if the price is slightly higher. Sometimes the energy saved is worth more than the small extra cost. I have also found that many times I can save money by shopping on-line.
NEW LUPUS DRUG IN FDA REVIEW
The biologic drug belimumab (Benlysta) is now in the Food and Drug Administration trials. If approved, it would be the first new therapy for lupus in 50 years. Belimumab inhibits the protein called B-lymphocyte stimulator or, BLyS, which our bodies require to make B-cells.
And those are the immune system cells that go haywire in lupus patients, making antibodies that attack the organs and joints.
The first trial held in 2009 showed a significantly reduced symptoms and lowered the amount of steroids that patients required. The second trial also held in late 2009 found a more modest effect that those taking a placebo, or the standard therapy.
Most of these patients were not able to reduce their steroid amounts. However, most experts believe that belimumab has a good shot at being approved.
EXPERIMENTAL FORM OF PREDNISONE TESTED FOR RHEUMATOID ARTHRITIS
A new form of the corticosteroid prednisone may help those with rheumatoid arthritis (RA), better than the standard therapy used today according to a new study.
German researchers have been testing an immediate-release form for mornings and a delayed release tablet for bedtime that will release the medication about four hours after ingestion.
23 percent of the study group taking the delayed release tablet shows morning stiffness had diminished over the immediate release group. Over time, their morning stiffness continues to improve, dropping by 55 percent over a 12 month period.
The study was presented at the 2009 annual meeting of the American College of Rheumatology in Philadelphia.
The only disability in life is a bad attitude.
- Scott Hamilton
I wanted to include this article that was published in several newsletters knowing that many of you are on, or have used Neurontin (Gabapentin) and I am still taking it. Carolyn
Pfizer Told to Pay $142.1 Million for Neurontin Marketing Fraud
By Bob Van Voris and Janelle Lawrence
March 26 (Bloomberg) -- Pfizer Inc. violated U.S. racketeering law in the marketing of its epilepsy drug Neurontin and should pay $142.1 million in damages, a jury decided.
Kaiser Foundation Health Plan Inc. and Kaiser Foundation Hospitals claimed in a monthlong trial in federal court in Boston that Pfizer illegally promoted Neurontin for unapproved uses. The insurer said it was misled into believing migraines and bipolar disorder were among the conditions that could be treated effectively with Neurontin, approved in 1993 by the U.S. Food and Drug Administration for epilepsy.
“The jury found Pfizer engaged in a racketeering conspiracy over a 10-year period,” Tom Sobol, a lawyer for Kaiser, said after yesterday’s verdict. “That bodes well for future cases.”
U.S. District Judge Patti Saris, who presided over the trial, is overseeing federal lawsuits from throughout the U.S. targeting Pfizer with injury claims and allegations of fraudulent sales and marketing of the drug. In a ruling last year, Saris said that fraud findings against Pfizer in the case decided yesterday could be binding against it in future trials.
Oakland, California-based Kaiser, the first insurer to try a Neurontin case against the world’s biggest drug maker, claimed it was forced to pay $90 million more than it should have for Neurontin. The jury, which deliberated for two days, found that New York-based Pfizer violated the federal Racketeer Influenced and Corrupt Organizations Act, or RICO, and California’s Unfair Competition Law. Under RICO, the amount of actual damages found by the jury, $47.36 million, will be tripled.
“This is a triumph for evidence-based medicine over marketing-based medicine,” said Thomas Greene, a Kaiser lawyer. Pfizer made no offer to settle the case before trial, Greene said.
“We are disappointed in this verdict,” said Chris Loder, a Pfizer spokesman. Pfizer will file post-trial motions challenging the verdict and plans to appeal, he said. Pfizer fell 22 cents to $17.39 yesterday in New York Stock Exchange composite trading.
During the trial, Pfizer argued that Kaiser doctors continued to prescribe the drug even after the health insurer sued Pfizer in 2005. The insurer’s Web site also still lists Neurontin as a drug for neuropathic pain, Pfizer lawyers said in closing argument. “We took that into consideration,” said Danielle Hurley, a 22-year-old artist who sat on the jury. “Kaiser was proactive, but could have been more proactive.” Hurley said she was shocked by evidence that Pfizer knowingly marketed Neurontin for off-label uses without proof that it was effective.
All of the five jurors interviewed after the verdict said they agreed that Pfizer had demonstrated “a pattern of fraud” in marketing the drug. “It was clearly a snow job,” said juror Paul Anderson, a technical writer.
“The message, if there was a message, is that they acted in a fraudulent manner,” said Hank Pierotti, foreman of the eight-person jury. “If you’re fraudulent, you deserve to be punished.”
Kaiser claimed Neurontin was wrongly prescribed for off- label uses, including treatment of neuropathic pain, and in dosages larger than the maximum approved by the FDA.
Jurors yesterday found that Pfizer violated racketeering laws with respect to four of the five off-label uses in question.
The company’s own studies showed that Neurontin was no more effective than a placebo in treating those conditions, though Pfizer never told doctors or patients about the findings, Kaiser said.
Several jurors said they were strongly influenced by the testimony of former FDA Commissioner David Kessler and Kay Dickerson, a Johns Hopkins epidemiologist whose article casting doubt on clinical studies of Neurontin appeared in the New England Journal of Medicine last year. Both testified on behalf of Kaiser.
“Dr. Dickerson was the lynchpin,” jury foreman Pierotti said. Pfizer argued that Kaiser didn’t present testimony from any doctors claiming they wouldn’t have prescribed the medication if they had known better, Pfizer’s lawyer argued. “No doctor wants to admit they were defrauded,” Pierotti said.
Warner-Lambert Co. developed and marketed Neurontin for several years before Pfizer acquired the company in 2000. Four years later, Warner-Lambert pleaded guilty and agreed to pay $430 million to resolve off-label marketing allegations by the U.S. Justice Department.
Saris permitted jurors to hear evidence of the settlement during the trial. “That helped a lot,” said juror Anderson. The Justice Department claimed in a 2004 sentencing memorandum that Warner-Lambert’s marketing increased off-label sales from 15 percent of all Neurontin prescriptions in 1994, its first year on the market, to 94 percent, or $2.12 billion, of Pfizer’s Neurontin sales in 2002.
In 2002, responding to press reports of Pfizer’s allegedly fraudulent Neurontin marketing, Kaiser began an information campaign that led to a 34 percent drop in Neurontin prescriptions to its members, according to Saris.
Among the cases in Saris’s court are product-liability suits claiming the drug is linked to an increased risk of suicide. The first trial in one of those, over the suicide death of a 39-year-old woman, ended when her family dropped the case. A second trial, involving the suicide of a 57-year-old Massachusetts man, is scheduled to begin next week in Boston.
In January, Saris dismissed fraud claims by Aetna Inc. and Guardian Life Insurance Co. against Pfizer. Unlike those companies, Kaiser showed it had considered Pfizer’s allegedly false claims and data in deciding to pay for off-label Neurontin prescriptions, Saris ruled before the trial.
The case is In re Neurontin Marketing, Sales Practices and Products Liability Litigation, MDL 1629, U.S. District Court, District of Massachusetts (Boston).
To contact the reporters on this story: Bob Van Voris in New York at rvanvoris@bloomberg.net; Janelle Lawrence in Boston at rvanvoris@bloomberg.net.
Last Updated: March 26, 2010 00:01 EDT
Fibromyalgia: The Diet Connection
Find out what experts say really matters about the foods you eat -- and why staying away from certain foods might help your fibromyalgia symptoms.
Rheumatology experts like Alex Shikhman, MD, believe the diversity of dietary approaches may have less to do with the impact on fibromyalgia, and more to do with treating a secondary, possibly undiagnosed illness. "When patients are helped by a specific dietary measure," says Shikhman, who is director and founder of the Institute for Specialized Medicine in San Diego, "it is often because of the presence of a secondary condition that does have a recognized response to diet. And when you take care of that, you do get some relief from all the symptoms. You feel better overall."
There are a number of co-existing health conditions that have a tendency to occur in people with fibromyalgia. Many of these have overlapping symptoms. These include gluten intolerance, gout (a form of arthritis), and restless legs syndrome. Some doctors believe food sensitivity itself could sometimes be responsible for some of the pain and fatigue of fibromyalgia.
Moreover, Holtorf points out that because each of these secondary conditions responds to a different dietary approach, it's not hard to understand why "different dietary recommendations are reported to work."
Shikhman believes that sometimes fibromyalgia may even be the wrong diagnosis. That's another reason, he says, we can sometimes see such dramatic and immediate response to so many different dietary measures.
"Sometimes, if you carefully note which foods a patient responds to," Shikhman says, "you can actually get a significant clue as to the true nature of their underlying health problems. And it might not always be fibromyalgia."
Fibromyalgia: Seven foods to avoid --
While there may not be a single set of dietary guidelines that are right for all fibromyalgia patients, there are certain foods, or food groups, that appear to make a difference for a significant number of people. But remember, avoiding these foods is not a guarantee that your symptoms will change.
1. Aspartame (NutraSweet)… foods sweetened with aspartame could exacerbate fibromyalgia symptoms. Aspartame may play a role in stimulating nerve pathways---other artificial sweeteners such as Splenda, saccharin, and stevia do not appear to have the same effect.
2. Food additives including MSG (monosodium glutamine) and nitrates… The same is true for foods containing preservatives such as nitrates, commonly found in lunchmeats like ham or bologna or in bacon.
3. Sugar, fructose, and simple carbohydrates, can reduce symptoms of chronic yeast infection -- a fungus that thrives on sugars and may be a secondary condition contributing to the pain of fibromyalgia. Cutting out carbonated beverages sweetened with fructose may yield even more noticeable results such as control of blood sugar. help reduce fatigue and at least some of the related pain.
4. Caffeine -- including coffee, tea, colas, and chocolate. Because it is considered a stimulant, many fibromyalgia patients turn to caffeine-rich beverages as a source of energy but the boost you get is false & can quickly cause fatigue.
5. Yeast and gluten. Yeast fosters the overgrowth of fungus in the body which may cause or exacerbate much of the joint and muscle pain experienced by those with fibromyalgia. Gluten can exacerbate a condition known as gluten intolerance which can result in a variety of stomach problems associated with fatigue in patients with fibromyalgia.
6. Dairy… Be they low fat or high fat, some experts say, dairy products -- particularly, milk -- have been known to drive the symptoms of fibromyalgia. Avoiding these products may help some people turn their health around. On the other hand, if you feel as if milk is doing your body some good, keep chugging a glass or two of skim milk a day.
7. Nightshade Plants: Tomatoes, chili and bell peppers, potatoes, and eggplant. There are over 2,000 species of plants that that can be listed under the category of "nightshade." Those which are edible comprise a group that some say can trigger flares of various types of arthritis, including fibromyalgia. At the same time, these vegetables are among the most nutritious. So if they don't trigger your fibro pain, don't ban them from your fridge.
Avoiding certain foods may help individual patients better cope with their disease. Nutritionist Samantha Heller, MS, RD, says, however, that most can also benefit from an overall heart-healthy approach to good eating. "When you are eating a heart-healthy diet - one low in saturated fat, lean meats, and poultry and high in the fresh fruits and vegetables that don't cause you problems, your body is going to work in a more healthful way, " Heller says.
From WebMD http://www.webmd.com/fibromyalgia/guide/
