The post 12 Symptoms of autoimmune disease infographic first appeared on Chronic Fatigue Syndrome.

There are different cases of CFS, from mild to severe. A person with mild CFS may often need to take extra days off work to rest, while a moderate case of CFS may mean reduced mobility and disturbed sleep patterns. Severe CFS can affect everything from your concentration to your mobility, and even minimal tasks such as brushing your teeth can be challenging.

The good news, however, is that chronic fatigue syndrome doesn’t have to define who you are, and you can still be productive by focusing on little things that can make the symptoms more manageable and enhance your quality of life.

Here five tips for getting the most out of your days, despite chronic fatigue syndrome.

1. Identify your triggers

Everyone has triggers; things that bring on intense CFS symptoms. By identifying your own triggers, you can take steps to avoiding things that aggravate your condition and you’ll be able to organize your day more efficiently.

For some people certain foods may trigger symptoms, others may have environmental or chemical sensitivities. Your physician may be able to help you identify your triggers, but keeping a daily diary of your symptoms and when they started can also help you to identify patterns.

Stress is also thought to be a big contributor to CFS symptoms, so try to eliminate stress from your life as much as possible. Avoid situations that are psychologically demanding; try to keep your schedule flexible and start working on tasks well before the deadlines so that you don’t feel pressured.

2. Pay attention to your food

Believe it or not, nutrition also plays an important role in your ability to cope with CFS. Certain foods like caffeine and sugar may give you a short term buzz, but once the initial effect has worn off, your energy levels will crash and you’ll be left feeling drained and exhausted.

In general, try to avoid junk food and prepare as much as possible of your food from scratch using whole grains, fresh fruits and raw vegetables and high-energy sources of protein such as beans or peas.

It’s also important to note that some foods, even if they are considered to be healthy, may not be the best for you. Everyone reacts differently to different foods, and CFS often causes food sensitivities or allergies that can worsen your condition.

Things like dairy or gluten for example may affect you adversely. Keep a food diary to determine which foods give you the most energy and which ones cause you discomfort.

3. Take notes

CFS is also known to cause memory loss in some individuals, so if you find it difficult to remember things or often walk into a room only to forget what you came to do, it may be a good idea to start noting down everything that you intend to do in order to maximize your time and efforts.

You should do this at the start of the day by making a checklist in a notebook or on your tablet or smart phone. Then throughout the day you can check off what you’ve already done, and remind yourself of what needs to be done next.

You can also keep track of everything from shopping lists to the names and details of new people you meet at work or school.

4. Rest before you are exhausted

One mistake that many CFS sufferers make is pushing themselves to the limit, which causes them to crash at the end or middle of the day. Rather than working to the point of exhaustion, it is far better to take regular breaks and rest stops before the symptoms become unmanageable.

Overexerting yourself also means it will take a lot longer to recover, so in the end you are getting less done than you would have if you took a break and rested on time.

Improving the quality of your sleep at night is also important to your energy levels during the day. Take steps to shut out distractions at bedtime. For example, you may want to  use earplugs or a white noise machine to block out noise and eyeshades to keep out the light.

It’s also best to avoid tech gadgets right before you go to bed as they can interfere with your sleep patterns. Don’t watch television in bed and leave your mobile phone and laptop or other gadgets out the bedroom.

Other things like herbal teas with honey or lavender potpourri may also improve your quality of sleep, so experiment with a few things and find out what works for you.

5. Be realistic: don’t compare your activity levels to other people’s

It’s important to be realistic about how much you can accomplish in a day. Don’t compare your activity levels with those of your friends or family, as this will only cause stress and dissatisfaction.

Make a point of measuring your progress by your own past efforts and not someone else’s. By staying realistic about what you can do and leaving room for good and bad days, you will be able to greatly reduce your stress levels and enjoy life more fully.

The post 5 Ways to Get More Done Despite Chronic Fatigue Syndrome first appeared on Chronic Fatigue Syndrome.

You can learn more about SSDI and SSI, here (http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/245/~/difference-between-social-security-disability-and-ssi-disability)

Fibromyalgia/CFS and Qualifying Criteria for Disability Benefits

When you apply for Social Security Disability benefits you must be able to prove that your condition is so severe that you cannot possibly perform any type of gainful work activity. The SSA does have policy in place to approve claims for individuals who are suffering from these conditions. In order to qualify for Social Security Disability benefits based on one of these conditions, however, you must be able to prove that your condition meets certain criteria.

Fibromyalgia

In the case of fibromyalgia, you must be able to prove that:

• You suffer from a history of widespread pain in all quadrants of the body and skeletal pain that has lasted for at least three months and is expected to last for at least 12 months
• You are experiencing pain in at least 11 of the 18 tender point sites
• There have been repeated manifestations of six or more FM symptoms or co-occurring conditions, especially manifestations of fatigue, cognitive problems or memory problems, waking un-refreshed, depression, anxiety disorders or irritable bowel syndrome
• Other possible causes of the symptoms have been eliminated

Chronic Fatigue Syndrome

In the case of chronic fatigue syndrome, you must be able to prove that you have suffered from the following for a period of at least six consecutive months and that these symptoms are expected to last a minimum of 12 months:

• Swollen or tender lymph nodes
• Non-exudative pharyngitis
• Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points

Laboratory Evidence

In addition to providing the SSA with medical evidence proving that you are suffering from the above clinical criteria, you must also furnish the SSA with certain laboratory findings that indicate the severity of your condition.

In the case of fibromyalgia you must provide:

• Complete blood counts
• Lab results showing erythrocyte sedimentation rate
• Anti-nuclear antibody test results
• Thyroid function test results
• Rheumatoid factor test results

In the case of chronic fatigue syndrome you must provide proof of:

• An elevated antibody titer to Epstein-Barr virus capsid antigen equal to or greater than 1:5120 or early antigen equal to or greater than 1:640
• An abnormal MRI brain scan
• Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing
• Other laboratory findings that are consistent with medically accepted clinical practice

Applying for Social Security Disability Benefits

To apply for the Social Security Disability benefits that you may be entitled to, you can apply online (http://www.socialsecurity.gov/pgm/disability.htm) or in person at your local Social Security office. Make sure that you have your documentation and medical evidence ready at the time of your application. Do not forget that written statements from treating physicians outlining how your condition affects your ability to work can make or break your case when it comes to applying for benefits due to these conditions.

You may want to consult with a disability attorney prior to submitting your disability application. Statistics have shown that applicants who retain the services of a disability lawyer are more likely to be awarded benefits than applicants who do not. You do not have to worry about any upfront cost to hiring a disability attorney. Disability attorneys are not paid unless you are successfully awarded benefits.

The post Fibromyalgia and Chronic Fatigue Syndrome and Social Security Disability Benefits first appeared on Chronic Fatigue Syndrome.

Fighting Fatigue from MS

At least 8 in 10 individuals with MS experience fatigue as at least an occasional symptom of the disease. Like CFS, MS has a poorly understood cause—some suggest a virus is at its root, others an autoimmune disorder. Regardless of its origin, the outcome is the same: fatigue.

Managing fatigue with MS, according to Healthline, is an entirely different task than managing a simple sleep deficit. To improve your chances of making progress, the first step suggested is to study your fatigue. When does it occur? What makes it better or worse? How limiting is your fatigue, and how often?

Tracking your fatigue could be a crucial key to beating it. Knowing when it’s at its worst can help you plan your daily activities and conserve energy. If you often feel your fatigue in full swing first thing in the morning, take it easy when you get up. Save regular morning prep (like setting up the coffee maker, picking out clothing, packing lunches, etc.) for the evening, and plan on being most productive when you typically have a period of energy.

If your fatigue is unpredictable, take stock of a few other factors that could be influencing your energy levels. For instance, ask your doctor about all of your medications—particularly pain meds. Many prescription drugs may increase fatigue as a side effect. If you already suffer from fatigue as a symptom of your condition, medications could be making it even worse.

When you’re feeling fatigued, the MS community might have another useful trick for you: getting physically refreshed. Because individuals with MS are often sensitive to heat, fighting fatigue can sometimes be as simple as jumping in a cold shower or standing in front of the fan! “Waking up” your body with a few go-to physical tricks might also relieve some of your fatigue, so find out what works—perhaps a quick nap, splashing water on your face, watching a quick comedy skit on YouTube, or tossing back a glass of cool water.

Steer clear of common fatigue aggravators: alcohol, caffeine, and irregular sleep patterns. Just as with CFS and fibro, competing symptoms can make it hard to get a solid night of quality sleep if you have MS. Getting poor rest can make fighting fatigue a losing battle. Follow some Mayo Clinic sleep tips to get the best rest possible.

The Grand Finale: Fight Fatigue (from MS or CFS!) with Exercise

One of the most critical strategies for fighting fatigue—be it from MS or from CFS—sounds downright counterintuitive. However, research trials almost uniformly support it. The fact is, regular physical activity can significantly improve quality of life and reduce fatigue for individuals with MS or CFS.

In one trial, exercise therapy was shown to lead to complete remission of CFS symptoms in some cases; in another, group exercise training improved every single outcome measure for patients with MS, including fatigue and overall quality of life. This is, indeed, one fatigue fighting strategy that not only works for multiple conditions, but that also has perhaps the single largest impact on fatigue levels for those who participate.

The problem for most people, however, is that they are too tired to lift a finger—how will they find the energy to exercise?

Some people may not benefit from exercise or may be told by their doctors to avoid physical exertion. The rest of us, though, could benefit significantly even from exercise as simple as taking a walk around the block or stretching while watching a television show.

Try to plan exercise for the time of the day during which you usually have the most energy. Eat well and stay hydrated to make sure your body has enough fuel for the activity, and start slowly. If all you can manage for the first week is a few bicep curls with a water bottle in your hand, so be it—it’s better than nothing! Don’t fall into the habit of thinking that a “little bit” of exercise isn’t worth it. Also, be sure to mix your activities to include both strength and cardio. Toning muscles and doing a bit of cardio will, in time, make regular activities feel like less of an effort. Finally, don’t push yourself past your body’s limits—if it hurts, stop!

Exercise should leave you feeling refreshed and more energetic than before you began. If it instead drains your energy so significantly that you feel a lot worse afterward or the next day, talk to your doctor. You may need to alter your routine or stop altogether.

Hopefully these tips from the MS fatigue-fighting strategies will put your own fatigue battle in a new light. Fatigue fighters unite!

The post From One Chronic Condition to Another: Fatigue-Fighting Tips from the Multiple Sclerosis Community first appeared on Chronic Fatigue Syndrome.

On July 20, 2011, the Journal of Internal Medicine e-published ahead of print “Myalgic Encephalomyelitis: International Consensus Criteria.” The panel of authors, led by coeditors Bruce M. Carruthers, MD, CM, FRCP(C) and Marjorie I. van de Sande, BEd, GradDip Ed, includes 26 authors from Australia (3 authors), Belgium (1), Canada (4), Chile (1), Ireland (1), Italy (1), Japan (1), Korea (1), Latvia (1), New Zealand (1), Norway (1), the United Kingdom (2) and the United States (8). The paper specifically cites 123 publications to support its recommendations.

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.

New Criteria Overview

ME is described as “an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.”

Of particular note is that other definitions have established a minimum duration of illness (either four or six months). The new ME definition removes this requirement: “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.” One of the questions arising from the new definition is whether individuals with a more transient illness will be considered to have ME.

Diagnosis begins with assessment of post-exertional neuroimmune exhaustion (PENE), rather than fatigue. “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”

In addition to the required feature of PENE, the individual must have seven other symptoms: three that demonstrate neurological impairment; three that demonstrate immune impairment; and one that demonstrates energy production/transport impairment. These are described more fully below. The term “atypical ME” is used when an individual “meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.”

The paper provides severity subgroups: “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50 percent reduction in activity; Moderate: mostly housebound; severe: mostly bedbound; and Very Severe: bedbound and dependent on help for physical functions.”

Special considerations are noted for making the diagnosis in the pediatric setting, including guidelines about distinguishing ME from school phobia.

The following co-occurring conditions are identified: “Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.” From reading the text, it does not appear that this list is intended to represent the only comorbid conditions that should be considered. For instance, specific forms of orthostatic intolerance (postural orthostatic tachycardia syndrome and neurally mediated hypotension) are referenced in the description of energy production and transport impairments.

Symptom Clusters

As stated earlier, the central feature of ME under this definition is post-exertional neuroimmune exhaustion (PENE). To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

“Characteristics are:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”

The individual must demonstrate neurological impairment by meeting a total of at least three symptoms from three of these four categories:
1. Neurocognitive impairment
a. Difficulty processing information: slowed thought, impaired concentration
b. Short-term memory loss
2. Pain
a. Headaches
b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates.
3. Sleep disturbance
4. Neurosensory, perceptual and motor disurbances
a. Neurosensory and perceptual
b. Motor

The individual must demonstrate immunological impairment by meeting a total of at least three symptoms from three of these five categories:
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastointestinal tract
4. Genitoruinary
5. Sensitivities to food, medications, odours or chemicals

The individual must have one of the following symptoms that demonstrate energy production/transport impairment:
1. Cardiovascular
2. Respiratory
3. Loss of thermostatic stability
4. Intolerance of extremes of temperature

Further descriptions of each of these symptom clusters are provided in Table 1 that accompanies the text. (Table 1 has been reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.)

The authors also provide additional directives for applying these symptom lists in clinical settings vs. research settings. The panel is at work on Physicians Guidelines and an International Consensus Symptom Scale. They specifically state that only subjects who fully meet ME criteria should be included in epidemiological research.

To read the rest of the information, click the link below.

Source

The post New Consensus Criteria for ME/CFS first appeared on Chronic Fatigue Syndrome.

  We all have baggage and crap from our lives that we carry into our adulthood and that we can blame on for why we are  the way we are, but sometimes traumatic things happen that we try to deny and push back and pretend that they don’t matter when in reality, all of those years we are pretending they don’t matter they are just eating and festering away at our insides. 

For years I denied to myself, and even to therapists, that I had never had any type of sexual abuse as a child when in actuality, I did when I was 10 years old by a family member.  I never told anyone until about a year ago and in someways I feel that coming out with the truth has helped me personally to heal, but in other ways it has been worse for my family as a whole.  But I know that I didn’t do anything wrong and regardless of how long ago it was, I don’t have to pretend anymore, I don’t have to act like I can be around this person without having panic attacks and having to take extra medication.  I just got tired of pretending like everything was okay when it wasn’t and I couldn’t put others in jeopardy either.  

Now before anyone has a coronary or takes what I’m about to say out of context, I DO FULLY BELIEVE THAT CFS & FIBROMYALGIA ARE PHYSICAL AND REAL DISEASES.  But I feel that in my situation that the trauma from the abuse, the denial of the abuse for 30 years, and everything I did to try and not deal with the feelings of having to deal with the abuse (becoming a workaholic and all of the other coping mechanisms I used) have further deteriorated my health.  I also feel that my emotional problems, the Major Depressive Disorder, I was recently diagnosed with was the culmination of everything coming crashing down and all of the emotions and everything I denied for so many years hitting me like a ton of bricks all at once. 

Trying to deny all of those feelings and to push them aside for 30 years could not have been good for me physically and we all know it’s not good mentally either.  It’s like a dam that finally bursts; the light that finally comes on.

The old saying that “everything happens for a reason” really seems to ring true for me.  When my health totally deteriorated back in 2003 and I had to go on disability and quit working at that time for a long time, I thought my life was over.  But now I am seeing that maybe that is what I needed because once I stopped pushing myself beyond exhaustion, once my body completely gave out and wouldn’t allow me to do anything, I couldn’t run away from my feelings anymore.  I had to start dealing with things that I hadn’t dealt with in years.  I had to start dealing with feelings, emotions, abuse and the results of all of those things because I could no longer escape in work.  My body was too sick to work and I couldn’t run away from them anymore.  My escape mechanism was gone. 

So the healing began – slowly but surely – and it has been a long, slow process but I am getting there and I feel that my health has slowly but surely been improving.  I have hiccups along the way, setbacks with my health and flares, but they seem to be coming further apart, I am looking and feeling better all of the time, and I think with the proper counseling now with revealing the truth, I can become whole.

CFS & Fibromyalgia will always be a part of my life – I have accepted that and I will continue to strive for balance and harmony so I don’t flare as often.  But I think that by dealing with all of the emotional garbage from my life – finally dealing with the abuse and past – I can at least heal mentally and physically it will be beneficial.

The post My Path to Healing: Revealing Secrets from the Past first appeared on Chronic Fatigue Syndrome.

The death of Caylee Anthony in 2008 has tugged on the heartstrings of many Americans.  Now that her mother, Casey Anthony, is on trial for the muder, we find ourselves unable to pull ourselves away from the case.  I’ve been watching the trial when time permits & I’ve spent much of it in disbelief as to how a mother could behave in such a manner.  As a mother myself, I keep wondering how could she go 31 days (or go even ONE day) without reporting her daughter missing?  How could she live it up during that time knowing her daughter was gone?  Worse yet – how could she behave like that and be her own daughter’s alleged murder? 

The problem with this whole trial is that all of the evidence is circumstantial.  There is nothing that definitively links Casey Anthony as the murderer.  There’s a lot of evidence that sure points in that direction & common sense tells us that she is guilty.  But I would not want to be on that jury.  Their job is to decide whether she is guilty beyond a reasonable doubt; and without actual, hard core, written-in-stone evidence that she committed the crime, will they have to acquit her of the charges? 

When I’m watching the trial, I can’t help but think about what if ME/CFS & Fibromyalgia were on trial.  Would they get their fair day in court?  If a jury had to decide whether CFS & Fibromyalgia were legitimate illnesses or not, I think there would be reasonable doubt in the minds of the jurors.  I know those illnesses exist; as fellow sufferers you know they exist as well.  But you can’t see either illness under a microscope.  There isn’t a blood test yet to say that X = CFS or Fibromyalgia.  I think a jury would need that proof in order to say yes – they are real.  Or could it go the other way?  If enough of us patients testified to the same symptoms, problems, coping skills, loss of life, etc., would that be enough?  In the Casey Anthony trial I keep hearing testimony after testimony that the smell in the trunk was human decompisition.  If enough people give the same testimony, that becomes extremely powerful in the minds of the jury I would think. 

Thank God this is just a scenario I’m running through my mind while watching the real trial but I do feel like I am on trial a lot of days.  I’ve felt many times like I have to answer, explain & respond to assanine questions regarding my health.  There are those who try to be judge and jury when they know nothing about what I deal with everyday.

The post If ME/CFS & Fibromyalgia Were On Trial… first appeared on Chronic Fatigue Syndrome.

I’ve talked about this subject before but it is something that comes up so often in conversations, I think it’s worth writing about again.  One of the big phenomenons surrounding ME/CFS & Fibromyalgia is the fact that we can look so healthy – so normal – but yet be so disabled and feel so crappy.  Our looks don’t fit with how we truly feel.  I think too if you have an upbeat personality, as I tend to have most of the time, it makes it even harder for people to realize and comprehend the severity of how sick I truly am.

I went in today around 3 p.m. to pick up a prescription and I told the pharmacist where I work that it’s a hot day outside but I was in bed all day so I didn’t realize how warm it truly was outside.  I wasn’t complaining or anything – I was just stating a fact.  I was up most of the night due to the sleeping problems I have from ME/CFS so it was after 5 a.m. and I finally gave in and took sleeping meds so I could get some sleep.  The pharmacist told me that if it wasn’t for the fact that he was my pharmacist and saw my medications, and knew the things about my health that I have shared, he would never guess to look at me that I am as sick as I am.  He told me today that I look so healthy and so happy. 

It does feel good to hear that because I don’t want to walk around looking sick because when I do look sick, it draws attention to me that I really don’t like.  Over the past year I’ve lost weight, I am now tan, and that makes me look even healthier so I look like the perfect picture of a healthy person.  But I’m not.  My body’s not no matter how hard I try. 

When I am having the really bad days, people can tell I am sick – especially those who know me – and my eyes will give it away.  My eyes tend to get very small and squinty and puffy and my voice will change.  My husband just told me today that when I am having a bad spell for a while he will call my cell phone answering machine just to listen to my voice because he misses the perkiness in it when I’m sick.  Isn’t that sad?  It’s like a slow death for family.  My son will also notice immediately when I’m not well just by my voice. 

People often think that we are complaining when we say others say we look good when we are feeling bad.  We’re not complaining – we just know that people have a hard time believing that in our illnesses anyway, then when you take the looks into consideration, it’s like a double whammy against us. 

What is the one thing we hear as soon as someone finds out we are sick with ME/CFS and/or Fibromyalgia?  “You don’t look sick”.  When someone says that it is as if they are totally disregarding and disbelieving the fact that you are truly ill.  Everything in life is not in black and white and these illnesses are definitely not easy to define. 

After the pharmacist told me how healthy I looked, he said that my positive attitude probably helps me some and that I am to keep smiling!  It did feel nice to get the compliment.  What woman doesn’t want to be told she looks good?

The post How Can We Look So Good But Feel So Bad with CFS & Fibromyalgia? first appeared on Chronic Fatigue Syndrome.

Now that we have been having a heat wave here over the past few days, I have started getting in the mood for the summer.  I always look forward to the spring and early summer season because I tend to feel better during this time.  I have less pain and I don’t feel as fatigued as I do during the fall and winter months.  I do, however, tend to notice that when the summer temperatures reach their all-time highs and the humidity starts to rise my symptoms will flare and I will feel miserable and want to only be in where there is central air. 

Allergies tend to also be a problem this time of year for many CFS & Fibromyalgia patients but for some reason, this year I am not having any allergy problems.  I’m rather surprised because in our area, most people who have allergies, my son included, are having an even harder time than other years and I’m not having any trouble at all.  Go figure.  My body is always the odd ball! 

When the humidity rises, swelling is a common problem among CFS & Fibro patients and this causes our pain to increase.  My feet and legs will swell up like crazy when it is really humid and my feet and legs look like they did when I was 9-months pregnant.  I keep myself hydrated and keep my feet elevated during these times to help rid my body of the excess fluids.

Vacations are always a big part of the summer for a lot of families but those of us suffering with chronic illness realize how taxing a vacation can be on our bodies.  Most people would think that a vacation would be relaxing and fun, which they are fun, but because we are having fun, we will tend to forget that we are sick and if we are able, we tend to overdo it and will find ourselves in a flare by the time we return or during our vacation.  I think proper planning and making sure you are well organized and don’t wait until the last minute to do everything you need to do to prepare for your vacation before you leave is super important in keeping your flare to a minimum. 

If you have young children like I do and find that the summer months are hard to get through because your kids want you to be busy all of the time and you physically can’t, sit them down for a little chat.  I have to have a little “reminder” talk with my son every summer and the past couple of years I have started talking to him about his expectations at the beginning of summer vacation.  I explain to him that while I will do my best to make sure he has a fun, active and enjoyable summer, there is only so much physically that I can do and I cannot be constantly entertaining him; we can’t be running around all of the time; and that he will have to be patient on my bad days and that plans can change at the last minute.

If you are having severe pain flare-ups, go get in a pool and cool off and walk around.  The water feels great and it will help with the pain.  I do this all of the time in the summer.  Also, when it’s hot, I don’t seem to mind the heat when I’m in the water and I can get some exercise outside while moving around the pool.  It is great for the legs and keeps the circulation going, especially when it is humid.

Just remember that the summer months are a time that many of us do see an improvement in our symptoms so it is easy to overdo it and to cause setbacks.  Try to pace yourself (and I’m talking to myself here, too!) and enjoy your summer, family and life!

The post Enjoying the Summer with CFS & Fibromyalgia first appeared on Chronic Fatigue Syndrome.

ME/CFS & Fibromyalgia are so unpredictable – just when I think I have a healthy balance figured out for my life – WHAM! – I’m hit with yet another flare and find that nope – I was wrong – I guess I can’t do that.  I get to where I start to feel comfortable, start to slightly feel like a routine is somewhere in sight and CFS & Fibromyalgia will remind me once more that they are the bosses in my life and that they rule. 

I have always said the only thing predictable about ME/CFS & Fibromyalgia is the fact that they are so unpredictable.  It has been such a long, hard struggle trying to find a balance in life that I can cope with and that my family can cope with.  I think some of the struggle to find a healthy balance comes with the fact that my work schedule is never the same and that it changes from week to week.   My husband and son are also not huge fans of my work schedule much of the time and sometimes the hours I work will cause some extra stress for me because they don’t like the hours I’m scheduled.  As we all know, stress of any kind, even a tiny bit of extra stress, is really harmful for ME/CFS & Fibro patients.  It makes our bodies go on overdrive and can send us into flares like crazy.

I have worked really hard and have strived really hard over the past 20-plus years to try and get to where I can find a healthy balance with living with these illnesses but I always feel like I’m failing and like I’m fighting a losing battle.  I know that there has to be a way to do it, there are people out there who are doing it, but I just can’t seem to get it down.  I’m trying to work, take care of my family, take care of my own health, take care of my home and it all gets overwhelming for me and I end up not being able to accomplish much at all.  My husband says I do a lot considering how sick I am but to me, I feel like I don’t get anything done.  When things start piling up that need done, I really feel how off-balanced life is because of being sick so much of the time. 

Life is short, I realize this, and I need to enjoy what I can do when I am able to do it -and I do.  I guess the Type A in me will always just want to do more!

The post The Struggle To Find Balance In Life with CFS & Fibromyalgia first appeared on Chronic Fatigue Syndrome.