FMS & CFS Archives June - Dec 2009

. On a Pain Scale of "1-10" Today's a "5" IT'S A GOOD DAY!!  j By Cindy Granke      Fibromyalgia is certainly a multifaceted illness.  I've had it for many years.  I felt like I had the flu or a virus for a couple of years.  My husband didn't understand that, but doctor's appointments didn't turn up anything so I stopped telling them all of my symptoms because they looked at me with that "this-one-is-a-full-fledged-hypochondriac" look. If you read over of the symptoms below you will see why it all sounds unreal.  I eventually began to feel like I actually was a hypochondriac!  How can a person feel this bad and hurt like this, all over for so long?  I eventually learned that, at that time, many doctors did not even believe Fibro existed, and considered those who did as the next thing to a quack.       About twelve years ago I saw a Physicians Assistant who made me feel comfortable enough to tell him more of what was going on with me.  Quite frankly I was scared that I had so many things wrong with me that I would die before anyone would listen and help me. My PA sent me home with a prescription to help my most immediate symptom and I was to come back in five days.  To my amazement he asked me if I had ever heard of Fibromyalgia.  I told him, "no". He told me to wait while he got something he wanted me to read.  This wonderful man had cared enough to do some research on the computer and it sounded just like what was happening to my body.  He handed a print-out to me and told me to read over it at home and see if it sounded like my symptoms.  He already thought that Fibromyalgia was what I had.  It did fit me, and I was so thankful to know that I was not a hypochondriac after all.  He referred me to a Rheumatologist in a nearby city for a more sure diagnosis.  She began to press on the Tender Points that characterize Fibromyalgia and it didn't take her long to make that diagnosis.       Most of the material below comes from Wikipedia.  I've added my own notes in italics - several that some of you may be able to identify with. If someone you know has Fibro, please read over these symptoms and learn what your friend is going through.  If you are a Fibro sufferer, yourself, you will find many of these symptoms describe you.  Cindy The defining symptoms of fibromyalgia are chronic, widespread pain and painful response to touch   moderate to severe fatigue (At its worst times I describe it as wading through deep water - against the current!  Sound familiar to any of you?  I often end up in bed when it's like this because it's too exhausting just to be up.) needle-like tingling of the skin muscle aches prolonged muscle spasms weakness in the limbs nerve pain functional bowel disturbances chronic sleep disturbances (Waking up feeling like I've never been to sleep.  It's a good idea to ask for a referral to a sleep specialist and have a sleep study done.  Sleep Apnea may be causing much of this problem.  It's worth checking out - and following up on the treatment.) Sleep disturbances may be related to a phenomenon called alpha-delta sleep, a condition in which deep sleep (associated with delta waves) is frequently interrupted by bursts of alpha waves, which normally occur during wakefulness. Slow-wave sleep is often dramatically reduced.   Many patients experience cognitive dysfunction (often known as "brain fog" or "fibro fog"), which may be directly related to the sleep disturbances experienced by sufferers of fibromyalgia. .. Fibro fog is often characterized by impaired concentration (Very often unable to come of with the word I am thinking of.  I can picture it but can't say it.  Now my loving husband has learned to figure out what I'm trying to say.) problems with short and long-term memory  (It's embarrassing not to be able to remember my home phone number when I'm trying to give it to someone at the other end of the phone.) impaired speed of performance (This can affect driving.  Good idea to be aware of you mental processing ability on any given day before you get behind the wheel.) inability to multi-task (I remember driving along, using my speed control and approaching a red light. There were cars ahead of me and I had to slow down but I couldn't remember how to disengage the speed control.  In my panic I slammed on the brake as I got frighteningly close to the car that had stopped ahead of me.  Then - I remembered that I only needed to step on the brake to disengage the speed control.  I felt stupid, embarrassed and decided that there are some days a fibro patient should just stay home.) cognitive overload diminished attention span anxiety, and depressive symptoms Other symptoms often attributed to fibromyalgia that may possibly be due to other simultaneously disorders include myofascial pain syndrome also referred to as Chronic Myofascial Pain.   Fascia is connective tissue that covers the muscles.  functional bowel disturbances and irritable bowel syndrome and interstitial cystitis dermatological disorders, headaches, and brief, involuntary twitching of a muscle or a group of muscles. (For me, this often comes as Restless Leg Syndrome.  The leg-twitches often come just as I am going to sleep and they wake me up, as well as my husband.) Although fibromyalgia is classified based on the presence of chronic widespread pain, pain may also be localized in areas such as the shoulders, neck, low back, hips, or other areas. Many sufferers also experience varying degrees of facial pain.  Symptoms are often aggravated by unrelated illness or changes in the weather. They can become more or less tolerable throughout daily or yearly cycles; however, many people with fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs. .. An epidemiology study consisting of an internet-based survey of 2,596 people with fibromyalgia reported that the most frequently cited factors perceived to worsen fibromyalgia symptoms were emotional distress (83%) weather changes (80%) sleeping problems (79%) strenuous activity (70%) mental stress (68%) worrying (60%) car travel (57%) family conflicts (52%) physical injuries (50%) and physical inactivity (50%)      I hope this helps you to better understand your friend or family member -- or yourself -- who has Fibromyalgia.  More and more doctors understand and treat Fibromyalgia now.  There are wonderful websites that have information and support for fibro patients.   Please use the box below to write to us here at Our Hope, and share your experiences, and any encouragement you have to offer to our readers.  Cindy    ,kThe CATCH-22 of CFS by Pat Gates Webster's meaning of Catch 22: (1) a problematic situation for which the only solution is denied by a circumstance inherent in the problem or by a rule <the show-business catch–22—no work unless you have an agent, no agent unless you've worked — Mary Murphy> ; also : the circumstance or rule that denies a solution (2) a: an illogical, unreasonable, or senseless situation b: a measure or policy whose effect is the opposite of what was intended c: a situation presenting two equally undesirable alternatives  from http://www.merriam-webster.com/dictionary Catch-22 came from Joseph Heller's 1961 best-selling book about pilots in a fictitious World War II setting. The paradox was that no sane pilot would be crazy enough to want to continue flying dangerous missions. The only way a pilot would be grounded is if he were truly crazy, but if he asked to be grounded, he was then considered sane and would not be grounded. Whenever you try to live normal in an abnormal body, there's a catch. Here are a few catch-22's in living with CFS: You need to exercise because of weakness but exercise will increase the weakness, thereby needing more exercise to offset the weakness created by exercising. The second step we talk about is activity and exercise. Of course, the first thing we point out is that this is an exertional illness. The more you exert, the sicker you get. If you overexert then you end up sick for a couple or three days in bed. On the other hand, if you don't do anything and you just lay around in the bed, you get deconditioned, and the muscles hurt, and the joints hurt more. So you have to get a narrow road. The thing that we really stress is that you have to avoid strict bed rest. That just does not do it, but balance light activity with rest, using common sense as a guideline. THE TREATMENT OF CHRONIC FATIGUE SYNDROME (CFS) Dr. Charles W. Lapp Sometimes when stimulus gets too much, if you could just cry you'd feel better, but if you do cry, the energy expended will make you feel worse. You feel like if you could just get out of the house you'd be happier, and when you do, you get so weak and dizzy you think if you could just get home you'd be happier. You feel so lonely and wonder why people don't call or come visit but you are hoping they don't because you are so weak you don't feel like talking on the phone or visiting with anyone. You search and search for a diagnosis and friends wonder why you can't be diagnosed. After ruling out MS, FMS, Lyme disease, MG, and other disorders, you finally get a diagnosis of CFS. When you tell others you have CFS they think you are misdiagnosed because it has to be more than just CFS or they think you are just looking for an excuse to be sick so you pick CFS, which isn't a real disease and friends wonder why you can't be diagnosed.  For years you strive to convince others you have a legitimate illness and can hardly wait for a diagnosis and when you are finally diagnosed with CFS you keep it to yourself because others ignorantly don't think it's a legitimate illness. When someone sincerely asks you about CFS you are so happy for the opportunity but brain fog puts up a barrier between your thoughts and your tongue so your answer ends up being not what you want to say and the person just stares at you, not knowing much more than before you began talking. Their conclusion ends up at point #1...you're tired and you need to get out and exercise more. How does CFS differ from depression? CFS symptoms rely on subjective report, which fuels the controversy over an organic versus emotional etiology of the illness. Some practitioners confuse clinical depression, which may also cause difficulty in cognitive processing, with CFS. High diagnosis rates of depression in CFS patients may result from overlapping symptomatology, reaction to disability imposed by fatigue or viral/immune changes in the brain. However, as has already been pointed out, studies have shown that some of the brain abnormalities found in CFS may be differentiated from patients who are psychiatrically depressed. However, this research is in its infancy, and more studies are needed. In addition, one recent study showed that the pattern of depressive symptoms in CFS patients is dissimilar to that observed in clinically depressed patients and more closely resembles the pattern observed in patients with multiple sclerosis (MS). By John DeLuca, PhD/http://www.co-cure.org "Coping is really just doing the best with what is happening in my life at the present time. Coping is finding out what works for you individually." .   . The 18 Tender Points of Fibromyalgia In 1990, the American College of Rheumatology listed two primary criteria for the classification of fibromyalgia.  The first is a history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.  The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.      More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain.  Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.  http://arthritis.about.com/cs/fms/ht/recognizesigns.htm      The dots above represent the general locations of the 18 tender points that make up the criteria for identifying fibromyalgia. If you think you may have Fibromyalgia you should make an appointment with a Rheumatologist. He will apply gentle pressure in just the right places to check your response.  Trust me.  You will know right away if you have Fibro.      See last month's article on this page for more information about Fibromyalgia.  But I always found that talking about the tender points was a bit confusing until I saw the drawings like the one above.  I hope seeing it makes things clearer for you.  cg   *  *  *  *  * From Deb:  What really concernes me is how so many doctors do not believe in FMS.  I just had my 5th back surgery & I explained to my doctor that I have never had back surgery having to deal with the FMS and bad weather like I will this time.  He did not comment.  So I'm wondering if he is one who doesn't believe.  My body feels like it has been beaten,  but the surgery has a high percentage of relief of the back pain.  Has anyone else run into this problem?  And how did you do if you had any surgery?  Thanks  deb       Ouch!  Five back surgeries!  Thank you for writing and sharing what you are facing.  I think more and more doctors are becoming aware that Fibro is a real illness and there are treatments for it.   However there are still many who simply do not know anything about it and have no clue how to treat it.  If you are seeing a Rheumatologist, be sure to tell him/her about your surgery and seek help with your pain.  Back surgery will likely limit your mobility for a little while and that will surely aggravate your fibro.  We are praying for and with you as you recover.  cg   . Summertime Blues The Heat Intolerance of CFS by Pat Gates "Flowers are wilting My enthusiasm, too Only weeds survive." -   Gaia Garden I count myself as an expect on heat intolerance and CFS. Why? Because I live in Florida. For those of you who have never been in Florida heat, imagine the hottest day you experience where you live, place a space heater in front of your face and have someone flick hot water droplets on you... oh, you also are wearing your winter coat. Recently, a friend told us it was 85 degrees at 4:30 a.m. when his friend went out to jog. I have experienced summers in the northeast where I lived in 2003 and 2004, from June to the first of September. When my son was hospitalized, I spent 3 months in a hotel room near downtown Philadelphia, walking the hot, steamy sidewalks where everyone, except this Florida gal, constantly complained of the heat and humidity. I laughed to myself when I heard their complaints because it didn't come near a hot Florida afternoon. Having CFS and living in Florida are two things which shouldn't go together, but some of us have no choice. We step outside and immediately feel weak or dizzy or out of breath or all three. But it doesn't take living in Florida for CFSers to be affected by heat because the slightest change in body core temperature can exacerbate symptoms. While we would like to remain in our air-conditioned houses there are times we must get out and want to get out. We need to do our best to stay as cool as we can as there are actual physical changes going on in our body when we get over-heated. Doctors don't know for sure why this happens but some believe "hot weather produces decreased excretion of adrenal hormones (cortisol) signaling adrenal exhaustion. This reason is perhaps prompted by stimulation of the hypothalamus, which is sensitive to heat." (Chronic Fatigue Syndrome, A Treatment Guide by Erica F. Verrillo, Lauren M. Gellman)  Heat also slows down nerve transmission which is why people with MS can't tolerate heat; whether or not it is the same reason we can't, I don't know.      Here are some ideas in dealing with the heat when you get out on hot, summer days: If you take a shower before you go out end the shower with cool water. Wear cotton and light colored clothing. Cotton does wrinkle easy and makes more work, doesn't it? That's the down side. I've begun wearing skirts, cool blouses, and sandles or flip flops when I'm out. I was surprised how much it helped compared to jeans or heavier clothing. If possible pre-cool your car a few minutes before you get in either by rolling the windows down or turning the A/C on. I've never used them but you can buy cooling cushions (see websites below for cooling products). Sounds like a good idea to use in the car. Wear a hat or use an umbrella when you are in the sun, even for short walks from the parking lot to the store. I recently discovered using an umbrella for sunny days and it helps so much. Bring a plant mister with water and spritz face, wrist or clothes. Find a restroom and place your wrists under cool water. Bring a cold drink with you in an insulated cup or thermos. Keep drinking as you shop...the colder the drink the better. Don't overdo. I know, I know, this one is tough but if we overdo, especially in the heat, we will pay for it the next few days. At Home: Cool down before exercising or housework and take breaks so you won't get over-heated. Wear cooling vests or bandanas and hats when gardening. See websites below. Stay hydrated and drink plenty of water. Use ice in drinks. Turn a fan when you work or exercise. Use a water spray or run cool water over wrists. Soak feet in cool water.  Still Learning About And Finding Ways To Cope With FMS! By Cindy Granke Over the past few months my usual fibromyalgia symptoms, along with a few new ones, progressively became more debilitating. Pain in my upper arms has become excruciating, especially upon awakening during the night and trying to move them.  A sister in our congregation mentioned that she had similar symptoms several years earlier, and thought it was Fibro, but it turned out to be a thyroid problem.  Treatment for the thyroid had eliminated her symptoms.    Another new symptom is that my fingernails have become more sore and brittle with lines in them, and one became very infected and I needed antibiotics. Some days my finger tips hurt to type.  For quite some time now I've found it difficult to open cans, even the ones with pull tabs.  I made an appointment to see my doctor and he ran some blood tests to check several things, including my thyroid. The conclusion was that my thyroid is fine.  I was almost disappointed that the problem was not an under active thyroid.  We could have fixed that.      There are several new can openers available these days which make our lives less painful. I recently bought a One Touch can opener and it has been one of my best purchases ever.  All I have to do is put it on top of a can and push the button.  A word of caution: while the lid may not have any sharp edges, as advertised, the rim of the can is pretty sharp and can cut your fingers if you aren't careful.     I said all that to say this.  While looking for some tips on coping with Fibro for this month's issue, I came across the ones below and I learned some things I had not realized before.  Maybe some of them will be new for you, as well.  It's easiest for me to add my comments after some of these.  Cindy  *  *  *  *  *  * Fingernail symptoms and fibro:  Oddly enough, people with fibromyalgia tend not to have the "half moons" at the base of their fingernails, with the exception of the thumbs. Another indicator with fingernails is if they have brittle, vertical ridges.  Look at your fingernails, Ladies.  I had no clue about the fingernails and this tip describes mine perfectly. Swollen glands and fatigue:  If you find that you have swollen glands on a fairly regular basis, have your doctor check you for Chronic Fatigue Syndrome (CFS). This often occurs right alongside a case of fibromyalgia. Many people suffer from both, but often one or the other goes undiagnosed.  Dressing for bed:  When dressing for bed - a place where comfort is of the utmost importance, because we really need a good sleep - don´t wear heavy flannels because if you get too hot you´ll wake and may even interrupt sleep to take them off. Instead wear something mid-weight in a natural, breathable fabric. Or go light and make certain you have several layers of bed clothing - sheet, light blanker, heavy blanket - that will help you control body temperature.  Clogged hair follicles:  If you find that your scalp is itchy, and then when you scratch you seem to come away with tiny "scabs" under your fingernails then you probably have clogged hair follicles. The scabs are actually little plugs of hardened oil. Jojoba oil is a miracle worker here. You can apply it straight, let it sit for a while and shampoo out. Or just use a shampoo that already contains it. If you can´t find that, you can add a tablespoon to your favorite regular shampoo – just make sure to shake well before using.  Jojoba oil is on my shopping list now. Writing difficulty-cognitive:  One cause of handwriting difficulty is cognitive – it´s common for people with FMS to transpose letters when writing and typing – an acquired dyslexia that makes it even harder to write legibly and sensibly. Try to stick to the computer if at all possible, because your days handwritten things can get so full of cross outs before you finally get all the letters in the right order, that your hand is then too tired to write legibly.  I've found that handwritten notes are so stressful that I've practically stopped sending them altogether.  I've felt guilty for a while for not sending handwritten notes the way I used to.  Plus, when the fog factor is added into the equation, my husband can attest to the sensibility of some of my notes.  Emails and e-cards are much easier - IF I don't forget to use the spell check option.   Restless Legs:  Restless Leg Syndrome (RLS) is common with fibro. Your legs feel tense and almost painful, and the need to keep moving them trying to find a comfortable position is intense – except you rarely manage to find that position. Many doctors prescribe quinine tablets for this – but a bottle of quinine water – the stuff used to mix a vodka and tonic – will work in a pinch. Take a few swigs (of the quinine water, cg) as soon as you feel the sensation coming on and you may even be able to head it off.  Comfort strategies:  Fibromites tend to swell slightly over the course of the day, so that clothing that feels good when we first put them on may be tight and uncomfortable by day´s end. Keep this in mind when selecting clothing, and find things that don´t constrict. Avoid underwire bras and look for something called a bralette or bralet.    Dress in layers:  Dress in layers. Fibromites all have broken internal thermostats. We can be hot and sweating when everyone else is shivering, or freezing as they are opening windows due to the heat. Start with something light and layer a jacket-type blouse or tunic over that and then keep a sweater or sweater coat handy and just peel things on and off as needed. Feeling like you´ve become stupid:  Fibro fog does not mean that you have lost any mental ability. You can still think and reason as well as ever, and if you took an IQ test chances are that your score will not have gone down. It simply means that you have problems with your short term memory. Think back to grade school – a long term memory – and chances are good that you remember a lot.  Fibro fog has become frightening to me.  A couple of examples?  I was on my home phone more than once when I was asked my home phone number, but I couldn't remember it for the life of me.  Worse, I couldn't find it written down anywhere.  How humiliating.  Very often I am unable to carry on a conversation – words just don't come, or are replaced by other words that don't fit. My husband tries to be patient but sometimes when I give up on one sentence and move quickly on to another one – usually with the same outcome – he reminds me to just take one topic at a time. The first time he did that it startled me.  It's easy for me to end up in tears on the really bad fog days.  I know it's hard for him to follow my illogical train of thought when I change subjects before conquering the first one.  I've been blessed with a husband who is gentle and gets my attention with a hug to slow my mind down a bit.  I believe that this is the most frightening and frustrating part of Fibromyalgia.  Alzheimer's has been a real concern of mine over the past year or so.  I expressed this to my doctor last week and he gave me the same assurance that is in the next tip.   By the way, I now have a sticky note on my computer desktop with my home and cell phone numbers. Now, if only I can remember they’re there!  It´s not Alzheimer's!   Many people who realize that their memory seems to be failing them become desperately afraid that they are getting Alzheimer´s disease. The bright spot is that if you know your memory is failing then it´s not Alzheimer´s. That very awareness is a hopeful sign that the problem is "just" common fibro fog – something you can learn to cope with.  Remembering things that need to go out with you:   Put things where they´ll remind you to deal with them. If you need to do something in the morning put it - or a note about it - on the coffeepot, or any other place you routinely visit each morning - perhaps the bathroom mirror, so that you will see it when brushing your teeth. If it needs to go with you, leave it at the front door, where you´ll have to trip over it before you can leave.   Get into a routine:  Work out routines. With small things that are easily mislaid like keys or glasses, make it a point to put them in the same place every time. Don´t open your car door until you have put your keys safely in your purse. When you get to the house, make certain to walk to the place where your purse goes immediately - always the same place. Put it there before doing anything else.   Loss of interest in sex:  Basically, most people with fibro experience a loss of interest in sex. This really isn´t surprising – very few people have a lot of libido when they ache and hurt and are exhausted, and when the problem is a chronic one, for which there is little relief. To make things worse – sex can hurt because it does involve stress on our connective tissues. You must make sure that your partner understands this, and doesn´t blame himself or herself.  Communication is the key.  Click on  Marriage ~ Aging and Intimacy  for helpful suggestions. Triggers without trauma:  While most people can point to some significant trauma that triggered the onset of severe fibromyalgia symptoms, some people cannot trace things back to any specific occurrence. This isn´t unusual, as sometimes the problem is triggered by prolonged stress instead of an acute episode of some kind. Being able to point to a specific trigger can be helpful psychologically, as it may explain to you why you found yourself suddenly suffering from pain and fatigue – but not finding a trigger does not mean that you don´t really have fibromyalgia. Journaling:  Keep a journal to write out your thoughts and feelings. You know people will get weary of listening if you try to express them out loud, but they do need an outlet for you to express them. But even more important, a journal may help you to pinpoint the types of situations that cause stress for you – and may also help you to pinpoint what types of stress lead to physical problems for you. A little positive introspection:  Make lists. Write down everything you like about yourself. List all the things you like to do and can still indulge in. If you´re depressed make lists of what depresses you. Take that out when you are in a good time and see if you can do anything about those things. And make lists of things you enjoy doing. When you´re depressed you´ll forget those - so take out that list, select one thing - and DO it!  Playing music can cheer me when I’m weepy, relax me when I’m stressed or give me the motivation to load or unload the dishwasher when I think I can’t manage one more thing.  Use humor to cope:  There is humor in fibro fog, so learn to enjoy it. Example: "Fibro fog is great. You can buy one book and read it repeatedly and still keep being surprised." Being able to laugh at yourself will help others to deal with your lapses as well. Brushing your teeth with a tube of polysporin will seem funny in a few days. Honest. Computers help us remember:   Use a computer reminder service to record important dates and appointments. One useful program is "Say the Time". People with fibro fog never seem to know what day it is, but this program will tell you hourly, on the hour. But better still, you can set an unlimited number of alarms to warn you of upcoming events that you need to remember – even to the point of an alarm to remind you to check the pot roast in 15 minutes – and 15 minutes later remind you to go do it.    Adapted from  http://fibromyalgia.lifetips.com/  If you have CFS be sure you know about Orthostatic Intolerance If you have CFS and have not heard of Orthostatic Intolerance (OI) now is the time to google it and talk to your doctor about it, if you have the symptoms. Some of the symptoms include lightheadedness, palpitations, and tremulousness during standing. Many patients also note other symptoms with upright posture: visual changes, discomfort in the head or neck, throbbing of the head, poor concentration, tiredness, weakness and occasionally fainting. Patients can be severely impaired by these symptoms and signs, such as a bluish-red discoloration of skin in the lower extremities on standing, which are relieved by lying down. Upon standing, blood pools in the legs so blood pressure lowers and heart rate rises. (NOTE: It is my understanding, OI doesn't always go along with CFS. I'm still learning so you need to check this out yourself.) . I had not known about OI until recently, but I've had the symptoms a long time. I began checking my blood pressure and heart rate when I felt especially bad when I was on my feet and I discovered something amazing; my systolic pressure (the top number) drops substantially, sometimes into the 80's and 90's while my heart rate goes up, as high as 147. I feel extremely week and like I'm going to faint and I have to sit down immediately. In OI, blood pools in the legs and feet and the heart tries to compensate by beating faster. Standing still, like waiting in a line, is the most difficult, and moving around helps, but even just sitting in a chair can bring it on.  . There is research going on to see the relationship between OI and CFS. Some believe the person should be diagnosed with OI instead of CFS while others believe OI goes hand in hand with CFS and while it may not cause all the symptoms of CFS, it may exacerbate the symptoms.  I spoke to my doctor about my blood pressure and he says OI indeed goes along with CFS.  . If you suspect you have OI, you may also want to google POTS (Postural Orthostatic Tachycardia Syndrome). . One recommendation for OI is to eat more salt, but please don't do that without checking with your doctor, especially if you have high blood pressure. Speaking of hypertension, it is important to have an accurate diagnosis of OI if you (like me) are taking high blood pressure medicine. I stress again, do not treat yourself if you suspect OI or POTS. Talk to your doctor about this. While none of us want to have OI, as it is disabling at times, it is good to know there is actual physical evidence of the effects of CFS to prove the reality of CFS and to disprove doctors and others who don't take it serious. . Pat Gates How To Win Your Case For Social Security Disability Benefits If You Suffer From Chronic Fatigue Syndrome and/or Fibromyalgia      I've had friends with Fibro call or write to me with worries about being able to continue in their jobs.  Mostly these ladies are widows or single mothers who feel they must continue working, but they have missed so many work days that they fear losing their jobs. If you have fibromyalgia/chronic fatique you know how difficult it is just to get out of bed sometimes.  If your work demands that you interact with people, especially with customers, you know it's not possible to think clearly some days, let alone make sense when you talk. I often can't remember my own phone number or where I was going when I driving.   When I saw this article I knew that it would be useful to all of us.  Cindy ~ ~ ~ ~      The author of this article is Sheri R. Abrams.  She is an Attorney who practices Social Security Disability Law in Virginia, DC and Maryland. Ms. Abrams graduated from the George Washington University Law School and the Boston University School of Management. For more information please see Ms. Abrams's web site at  http://www.sheriabrams.com  or  sheri@sheriabrams.com ~ ~ ~ ~ Winning a Social Security Disability case for someone who suffers from Chronic Fatigue Syndrome and/or Fibromyalgia (CFS/FMS) can be very difficult. However, with proper preparation I am often able to win client's their Social Security Disability benefits. I approach a Chronic Fatigue Syndrome or Fibromyalgia case using the following five factors: 1) Was the Diagnosis of Chronic Fatigue Syndrome or Fibromyalgia Made by a Specialist?  I am always very skeptical on my chances of winning when a person comes to me and is not being treated by a specialist in Chronic Fatigue Syndrome and/or Fibromyalgia. I usually prefer to see that the client is being treated by a Rheumatologist but I have been successful in these type of cases working with an Infectious Disease Specialist and a Neurologist. I feel that the diagnosis of a primary care or internist is not sufficient in this type of case. It is also important, of course, for this doctor to be supportive of his/her patient’s disability case and for me and the client to know this from the beginning of my representation. If a person calls me and does not have a specialist working with him/her, I suggest that they contact a local support group for a referral. 2) Has the Client’s Doctor Eliminated Other Diseases Through Testing Before Diagnosing Him/Her with Chronic Fatigue Syndrome and/or Fibromyalgia? I feel that to provide validity to the diagnosis of Chronic Fatigue Syndrome and/or Fibromyalgia certain medical tests need to be performed so as to rule out other conditions. I usually like to see blood work done that excludes other Rheumatic diseases which may share symptoms with, or mimic, CFS/FMS. In cases of Fibromyalgia I look for a physical exam that finds and documents tender points. In Chronic Fatigue Syndrome cases I also normally like to see that a Tilt Table Test has been done. 3) Are the Client’s Complaints Typical For Someone Who Suffers With Chronic Fatigue Syndrome and/or Fibromyalgia? By now I can usually tell by interviewing a prospective client if his/her complaints are typical. The client’s medical records should show documented symptoms. Without this documentation, the diagnoses of CFS/FMS may be subject to disbelief by Social Security. 4) Was the Client Treated With Physical Therapy and/or Pain Medication? I like to show an Administrative Law Judge (ALJ) that my client has tried whatever treatment is available for his/her condition. Whether this is a series of physical therapy appointments, narcotic pain medications or even non-traditional treatments like biofeedback or acupuncture. I feel that the severity of my client’s condition will be supported by the fact that he/she has tried everything to find relief. 5) Has the Client Consulted or Been Treated by a Psychiatrist or Therapist? Because I do not want an ALJ to attempt to say that Chronic Fatigue Syndrome or Fibromyalgia are "mental disorders" I like to show the ALJ that my client is either seeking treatment for depression or anxiety or has had these conditions ruled out by a mental health specialist and are still suffering from Chronic Fatigue Syndrome and/or Fibromyalgia. Sheri Abrams "Chronic Fatigue, Fibromyalgia...Whatever!" By Pat Gates A business friend of my husband's called me a few weeks ago, excited that she had received a diagnosis of Rheumatoid Arthritis after several years of suffering with pain. She wasn't happy to have RA, but glad for a diagnosis as she had been wondering if she had FMS. She called me to urge me to look further for a diagnosis. She didn't say it, but she came across as thinking my illness had to be more that just CFS. She encouraged me to go to Mayo clinic and thought because she was diagnosed with something more legitimate and serious than FMS, than I probably had something more legitimate and serious myself.      This isn't the first time this has happened to me and it won't be the last. People are ignorant of just how "serious" CFS and FMS can be, not in the sense of life-threatening (although there has been at least one death that I know about - a woman in England dying from complications of CFS), but serious in the fact it can be quite debilitating and life-changing. In the conversation with this woman I told her I had been to Mayo but she never heard it; she was too busy telling me what I needed to do. I tried to explain to her how I knew it was CFS but I soon gave up because she just wasn't listening.      Throughout the conversation, this woman kept saying I had FMS and when I corrected her, she said, "Fibromyaglia, Chronic Fatigue, whatever!" as if they were the same illness and each being equally illegitimate. Now, don't ge me wrong, I do appreciate the fact she wanted me to get the right diagnosis, but I don't appreciate intentional ignorance and not listening.   NEW DISEASES/SYNDROMES TAKE TIME TO BE ACCEPTED:  .       What I wish I could have explained is that new illnesses or newly identified illness takes time to be accepted and in past history, all illness and syndromes have gone through the acceptance process, including rheumatoid arthritis. Consider Multiple Sclerosis; in the not too distant past it was called, "creeping paralysis," and was considered a mental condition caused by "female hysteria." I don't know what their explanation was if a man got MS.        Peptic ulcer was once thought of as being purely caused by stress, but later research revealed that Helicobacter pylori caused 80% of ulcers, leading many to believe that ulcers are not caused by stress. However 4 out of 5 people infected with Helicobacter pylori do not develop ulcers, and an expert panel convened by the Academy of Behavioral Medicine Research concluded that ulcers are not merely an infectious disease and that psychological factors do play a significant role. One possibility is that stress promote Helicobacter pylori infection in the body.  (selected off internet)   THE SERIOUS SYMPTOMS OF CFS/MYALGIC ENCEPHLOMYELITIS: What are some of the symptoms of Myalgic Encephalomyelitis? (from online source) More than 64 distinct symptoms have been authentically documented in M.E. At first glance it may seem that every symptom possible is mentioned, but although people with M.E. have a lot of different minor symptoms because of the way the central nervous system (which controls virtually every bodily system) is affected, the major symptoms of M.E. really are quite distinct and almost identical from one patient to the next. (Hooper & Montague 2001a, [Online]) (Hyde 2006, [Online]) Individual symptoms of Myalgic Encephalomyelitis include: Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm.   M.E. is not stable from one hour, day, week or month to the next. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E. All of this is not simply theory, but is based upon an enormous body of mutually supportive clinical information. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on (Chabursky et al. 1992 p. 20) (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 pp. x-xxi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).   ‘Fatigue’ and feeling ‘tired all the time’ are not at all the same thing as the very specific type of paralytic muscle weakness or muscle fatigue which is characteristic of M.E. (and is caused by mitochondrial dysfunction) and which affects every organ and cell in the body; including the brain and the heart. This causes – or significantly contributes to – such problems in M.E. as; cardiac insufficiency (a type of heart failure), orthostatic intolerance (inability to maintain an upright posture), blackouts, reduced circulating blood volume (and pooling of the blood in the extremities), seizures (and other neurological phenomena), memory loss, problems chewing/swallowing, episodes of partial or total paralysis, muscle spasms/twitching, extreme pain, problems with digestion, vision disturbances, breathing difficulties, and so on. These problems are exacerbated by even trivial levels of physical and cognitive activity, sensory input and orthostatic stress beyond a patient’s individual limits. People with M.E. are made very ill and disabled by this problem with their cells; it affects virtually every bodily system and has also lead to death in some cases. Many patients are housebound and bedbound and often are so ill that they feel they are about to die. People with M.E would give anything to instead only be severely ‘fatigued’ or tired all the time (Bassett 2009, [Online]). http://www.hfme.org  , Clearing the Fog Coping with the Cognitive Dysfunction Many people with Chronic Fatigue Syndrome and fibromyalgia experience episodes of unclear thinking or cognitive dysfunction. They become forgetful, lose their train of thought, forget words or mix them up. This is what is popularly called “brain fog” or “fibro fog.” Following are some basic memory and communication tips that can help you deal with episodes of minor cognitive dysfunction. Here are some common-sense pointers that can help you clear the fog: 1. Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind. 2. Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you're afraid you won't remember something, putting pen to paper can help. 3. Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day. 4. Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory. 5. Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory. 6. Stay active. Physical activity, in moderation, can increase your energy and help lift your brain fog. Speak to your doctor or physical therapist about an exercise program that is right for you. 7. Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help. 8. Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember. 9. Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don't take on more than you can handle at once. Stress and fatigue will only make the situation worse. This excerpt above is from The Good Living with Fibromyalgia Workbook, ©2003 by The Arthritis Foundation.  , ME virus discovery raises hopes US scientists say they have made a potential breakthrough in understanding what causes the condition known as chronic fatigue syndrome (CFS) or ME. Their research in the journal, Science, suggests that a single retrovirus known as XMRV does play a role in ME. They found the virus in 67% of ME patients compared to under 4% of the general population. But experts cautioned that the study did not conclusively prove a link between XMRV and ME. ME is a debilitating condition that affects an estimated 17 million people worldwide. The discovery raises hopes of new treatments for the condition. Retroviruses are known to cause neurological symptoms, cancer and immunological deficiencies. Contributing factor The Whittemore Peterson Institute in Nevada, said they had extracted the DNA from XMRV in the blood of 68 out of 101 patients with the condition. Cell culture experiments revealed that the patient-derived XMRV was infectious. The researchers said these findings raise the possibility that XMRV may be a contributing factor to ME. XMRV is also known to have a role in some prostate cancers. Dr Judy Mikovits, who led the study, said: "It's a blood borne pathogen that we contract through body fluids and blood transmission. "The symptoms of ME - chronic fatigue, immune deficiencies, chronic infections - are what we see with retroviruses. "This discovery could be a major step in the discovery of vital treatment options for millions of patients." Tony Britton, of the ME Association said: "This is fascinating work - but it doesn't conclusively prove a link between the XMRV virus and chronic fatigue syndrome or ME. "Many people with ME/CFS say their illness started after a viral infection, and a number of enteroviruses and herpes viruses have also been implicated in the past. "ME/CFS is an immensely complex illness, with many possible causes and there are up to 240,000 sufferers in the UK desperate to get better." Invest in ME are enormously encouraged by the current research which shows a potential new cause for this devastating neurological illness. More importantly it promises a diagnostic test is within reach. A spokesman for Invest in ME said: "This is a huge step achieved in such a short time and will bring hope to all people with ME and their families. "We now call on the UK government, the Chief Medical Officer and the Medical Research Council to support our view that only a research strategy based on adequately funded and coordinated biomedical research into ME will succeed in creating treatments and eventually a cure for this devastating neurological illness. " Dr Richard Grunewald, a consultant neurologist at the Sheffield Teaching Hospitals NHS Foundation Trust who is also on the panel that gives advice to NICE on CFS, said he had reservations about the research. He said: "The idea that all CFS can be caused by a single virus doesn't sound plausible to most people who work in the field. "A lot of the symptoms of CFS are not those of a viral infection." Sir Peter Spencer, chief executive of Action for ME, said: "It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long. Story from BBC NEWS: http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/8298529.stm Published: 2009/10/09 09:11:14 GMT © BBC MMIX  , I have spent the last few weeks feeling like I was being beaten up from inside on a daily basis. This beating attacks the mind, body & soul, slowly depleting any spark that exists… When you are chronically ill there is a desire to latch on to the positive in order to try and fit in to normal life. But this positivity is most of the time an act and can take an enormous amount of energy too. -Treya McEvoy  . "The CFS patient must wait for a good day to go shopping for an hour or so. And that is what life is like. A good day is celebrated by going shopping. Or cleaning the kitchen. A bad day is spent in bed. It is actually amazing that not every patient with CFS is depressed." -David Bell M.D.

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