I’m Back! (I hope…)

Standard

Hello anyone who’s still waiting for new posts on my blog!! :p I am truly sorry that it’s been a YEAR since I’ve updated this blog. Providing understandable, easily accessible, and thorough information about chronic pain illnesses is certainly still important to me, but having fibromyalgia and chronic fatigue myself always complicates things. Throw in the typical life events and stresses that we all deal with and here we are! 2015 has been an interesting and mildly stressful year–moving into a house, starting my first job, switching medical insurance, still struggling to stabilize my health, and more. But the desire to share my experiences and what I’ve learned has again frequently been on my mind. I still want to help people in the same situation as me:  dealing with a unique and difficult illness that has little official or confirmed information available to help you out. So I’m looking forward to getting back to updating this blog and reaching my fellow sufferers! Thank you for your understanding and continued support!

Zee

Advertisements

Chronic Fatigue Syndrome–Diagnosis and Prognosis

Standard

 

How Is It Diagnosed?

According to the CDC (Centers for Disease Control) as of 2013, more than 1 million people in the United States have chronic fatigue syndrome, 0.35% of the population at that time. An obvious question is, for a disorder that occurs only 12% as often as fibromyalgia, what possible ways to diagnose it could there be? In short, none. There are currently no diagnostic tests that can confirm the presence of CFS in a patient. Nevertheless, there are criteria based on the commonly observed symptoms. A doctor must perform blood and urine tests that can exclude or confirm other illnesses as the cause and still weigh your range of symptoms against the other difficultly (yes, that is a word!) diagnosed conditions like fibromyalgia in case you have one of those instead. He or she should also rule out mental disorders, existing or previously experienced illnesses, and medication side effects.

The CDC and most doctors currently use a case definition produced by a group of CFS experts in 1994 to diagnose the condition:

  • “The individual has severe chronic fatigue for 6 or more consecutive months that is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted)
  • The fatigue significantly interferes with daily activities and work
  • The individual concurrently has four or more of the following symptoms:
    • post-exertion malaise lasting more than 24 hours
    • unrefreshing sleep
    • significant impairment of short-term memory or concentration
    • muscle pain
    • pain in the joints without swelling or redness
    • headaches of a new type, pattern, or severity
    • tender lymph nodes in the neck or armpit
    • a sore throat that is frequent or recurring

These symptoms persisted or recurred during 6 or more consecutive months of illness and they cannot have first appeared before the fatigue.” (http://www.cdc.gov/cfs/case-definition/index.html)

Any other common symptoms associated with CFS should not be used in its diagnosis, though they likely confirm its presence afterwards.

What’s the Prognosis?

As with fibromyalgia, there is no cure, but unlike FMS, neither are there any FDA-approved medications to treat it as a specific disorder. The frequent changes that occur in the nature of a patient’s CFS and cycles of remission and relapse also make it a difficult disorder to treat. But, as with any incurable illness, the symptoms can be managed with some success, depending on the patient and the severity and variability of his or her symptoms.

Medications can be prescribed to treat sleep problems and lack of energy, pain, depression, and gastrointestinal problems while regulating sleep patterns, managing and reducing stress, physical therapy and exercise, and therapy for emotional problems can also help. CFS sufferers have also found that alternative therapies such as massage therapy, acupuncture, hydrotherapy, and yoga seem to help relieve symptoms as well. All in all, there is not much difference in treatment between chronic fatigue syndrome and fibromyalgia syndrome.

 

Chronic Fatigue Syndrome–How It Feels

Standard

So we’ve learned about the symptoms of chronic fatigue syndrome. But how do these symptoms feel to those affected by them? How are they experienced? This post will attempt to convey the nature of some the symptoms of CFS in more descriptive language, hopefully giving non-sufferers a better sense of what CFS victims endure.

Fatigue–the dictionary definition of fatigue is “weariness from bodily or mental exertion (noun)” and “to exhaust the strength of (verb)”; the definition of exhaustion is “extreme weakness or fatigue; the total consumption of something (in this case, your physical, mental, and emotional energies) (noun)”. Can you imagine having all of your energy just gone, no reserves? Most healthy people only come close to this after an unusually stressful day or a day full of more physical activity or exertion than they’re used to. And yet, CFS is worse. The fatigue is extreme, severe, bone-deep, and intense. It is often without cause and is not improved with rest or sleep. It is like a heavy and relentless weight holding you down (physical) or a thick fog permeating your body and senses, muffling everything (mental; emotional). Such fatigue makes even the most basic daily activities, such as personal hygiene or eating, a challenge.

Post-Exertional Malaise (PEM)–the dictionary definition of malaise is ” a condition of general bodily weakness; a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort”, and lethargy is “the quality or state of being listless and unenergetic, dull, sluggish”; we all experience the tiredness that comes after exerting ourselves, but PEM causes you to continue feeling tired and lethargic for longer than you should, based on whatever activity it was that you did, and to even feel increasing exhaustion even though the activity has been stopped; this experience lasts for at least 24 hours after the activity; you just can’t shake the exhaustion; it sticks to you and settles in rather than dissipating as it should
Pain–the muscle and joint pain as well as headaches experienced by CFS sufferers are very similar to that endured by FMS patients, though on a lesser scale than with FMS while still more than the average person; for more on how such pain feels, see the description of FMS pain in the post “Fibromyalgia Syndrome–How It Feels”; for CFS, joint pain seems to be most prominent
Unrefreshing Sleep and Sleep Difficulties–this aspect is fairly straightforward to describe; unrefreshing sleep is when you still feel as tired after sleeping as you did before going to sleep; you do not feel rested or refreshed and it’s as if you didn’t sleep at all; other sleep problems CFS sufferers encounter are difficulty falling asleep and/or staying asleep and inordinate sleepiness during the day
Cognitive Difficulties (Brain Fog)–the short-term memory, concentration, and complex thinking problems that CFS patients deal with is just like the brain fog (fibro fog) felt by those with FMS, though sometimes more severe in the case of CFS; for a description of brain fog, see the post “Fibromyalgia Syndrome–How It Feels”
Flu-like Symptoms–if you’ve had the flu, than you know what this feels like; I’ve never had the flu, but I know its usual symptoms and any, or even all, of them can afflict a person with CFS; these include achy joints and muscles, fatigue, sore throat, runny nose, headaches, chills, and fever; all of these might occur, yet no flu virus will be found in your body; I find this to be a very odd and unusual symptom (if there is such a thing for sufferers of chronic and uncommon illnesses) and if not for this symptom, I would be convinced that I have CFS rather than FMS, but who knows…
I hope that this post helps healthy persons to better grasp the challenges faced by those with CFS and understand the tangible and real effect it has on a person’s life and abilities. I also hope that those who suffer from chronic fatigue are helped to fight the self-deprecating feelings of uselessness and inadequacy that this symptom often causes.
If you are a chronic fatigue syndrome sufferer, please feel free to share your experiences with and thoughts on the disorder below!

Chronic Fatigue Syndrome–Definition and Symptoms

Standard

What Is It?

Chronic fatigue syndrome (CFS)–aka chronic fatigue and immune dysfunction syndrome (CFIDS) aka myalgic encephalomyelitis (ME)–is an illness characterized by intense, deep, and persistent fatigue and exhaustion. Definite immune system abnormalities have been found in the majority of CFS patients, hence the alternate names (“myalgic” = of or relating to myalgia, which is muscle pain; “encephalomyelitis = inflammation of the brain and spinal cord, usually due to viral infection).

About 1 million, less than 1%, of Americans have CFS, and among them, more women are affected than men. The cause is unknown–though current thoughts trend toward infection, immune disorder, or neurological disorder–and there is no cure. CFS produces some similar symptoms to fibromyalgia syndrome (FMS) and the two often occur together, but there are differences.

What Are the Symptoms?

A syndrome is a set of symptoms that occur together, indicating the existence of a particular disease. Therefore, chronic fatigue syndrome most commonly presents the following set of symptoms:

  • as stated above, overwhelming, persistent fatigue
  • post-exertional malaise–disproportionate exhaustion lasting at least a day after mental or physical exercise
  • pain–muscle pain; joint pain without swelling or redness; headaches
  • unrefreshing sleep; sleep difficulties
  • impaired memory and concentration; brain fog, cognitive difficulties
  • frequent or recurring sore throats
  • tender and/or enlarged lymph nodes in the neck and armpits
  • other flu-like symptoms

Additional symptoms (and disorders) that often occur along with these are:

  • gastrointestinal problems
  • allergies and sensitivities to foods, odors, chemicals, medications
  • depression, mood swings, irritability
  • visual disturbances (blurry sight, light sensitivity, eye pain)
  • dizziness, balance problems, fainting; difficulty maintaining an upright posture
  • chills, night sweats
  • gynecological problems, including PMS
  • chronic inflammation of the bladder wall (interstitial cystitis), chronic pelvic pain
  • temporomandibular joint disorder (TMJ)

I think what really sets CFS apart from FMS are the flu-like symptoms that often precipitate and accompany the illness. If not for a lack of these flu-like symptoms, I would believe that I have chronic fatigue syndrome rather than fibro. But who knows. I could even have both, which is called comorbidity–the simultaneous presence of 2 (or more) chronic medical conditions in 1 person. Many fibro and CFS sufferers can attest to having comorbidity.

Are you a CFS sufferer? Do you experience comorbidity? How do you cope?

DIY Adaptive Technology–Crocheting

Standard

As you know, my newest obsession hobby is crocheting. The impetus to delve into this craft was to give me something semi-constructive to do while having bouts of fatigue and being in bed all day, though awake most of the time. The enslaving cycle of Netflix and sleep could no longer be endured, especially once it started creating additional problems for me. So I began crocheting. But, as is typical for chronic pain and illness sufferers, I ran into some obstacles:  1) I developed tendonitis in my left thumb joint from holding my work-in-progress too tightly and 2) the metal crocheting hooks were giving me sores on my right hand and fingers. At first, I tried to be more relaxed and not hold myself or my project too tightly, but no matter how much I willed myself to stay loose, I ALWAYS ended up gradually getting tighter and tighter until sparks of pain broke my focus. As it seemed I would not be able to help myself without external assistance, I went to the “Google box”, as my husband calls it :-), and began researching tools for helping crocheters with hand problems. Surprisingly, I found ZERO articles about how to stop the hand that holds the working (“work-in-progress”) yarn and yarn tail, which is my left hand, from cramping up and getting strained. I was very disappointed and on the verge of giving up when I thought, “Well, how do one-handed people crochet?” This wasn’t a completely ridiculous question since adaptations and assistive technologies for one-handed and one-armed people have been developed for every activity under the sun that they can be. So that was my next query for the “Google box” and, though the relevant results were still small, I did get some useful information. The most helpful and relevant sources I found were the following:

http://knittingandcrochetingonehanded.blogspot.com/2011/05/knitting-and-crocheting-one-handed.html

http://www.abledata.com/abledata.cfm?pageid=19327&top=15710&ksectionid=19327&productid=74168&trail=0&discontinued=0

 

 

 

 

 

 

 

 

 

 

 

 

http://www.amazon.com/gp/product/B000UBFE1Y/ref=as_li_tf_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=B000UBFE1Y&linkCode=as2&tag=croc05a-20

 

http://www.amazon.com/Edmunds-6111-Universal-Craft-Stand/dp/B000YZ7M0W/ref=pd_sim_sbs_hpc_6?ie=UTF8&refRID=010PQDP9CKSV31F4DP01

 

http://www.amazon.com/CLOTILDE-TH-100-Third-Hand-Sewing/dp/B00CDB5DMY/ref=sr_1_7?s=arts-crafts&ie=UTF8&qid=1416365299&sr=1-7&keywords=clamp+it

 

http://www.abledata.com/abledata.cfm?pageid=19327&top=15710&ksectionid=19327&productid=79384&trail=0&discontinued=0

 

 

 

 

 

 

 

 

As was true of the results for my first search, the first two sources only relate to replacing the hand that holds the hook (the right hand). Nonetheless, they made me wonder if there was a holding device that would hold the work instead of the hook.

This line of thought led me to the third and fourth sources which were still not what I wanted, but helped me to better visualize what I had in mind. I wanted to find something that would hold crochet work instead of embroidery work. No such thing exists, BUT the “third hand” product from the fifth source was mentioned in an article and it was almost perfect! I just needed a larger clamp and no elastic band but an adjustable neck instead.

 

I bought some cell phone holders online that clamped onto tables like binder clips do, had flexible necks, and had wide “claws” that looked like they would hold my work on each of its sides (pictured above). Unfortunately, they are a bit larger than I anticipated so bending them to the right distance apart is difficult. And the “claws” do not hold on tightly enough to the work so that it’s taut and I can push the crochet hook through. I’m still trying to find a way to create what I see in my mind. This version of the “third hand”–http://www.amazon.com/Stitching-Helper-Hemming-Embroidery-Sewing/dp/B004QJ3LSE/ref=pd_sbs_ac_4?ie=UTF8&refRID=0WRMWXMJWW5PCWW5BRKM–is much closer and though it still has a small clamp for the work, that should be good enough for holding the row I am currently working on. I may buy two of these and see if I’m right…

 

The last source in the list, Kroh’s Crochet Aid, was particularly helpful. Though it does not hold the work, it still provides a way to take some of the pressure off of your yarn-holding hand, which is also the goal of having a tool hold the work for you altogether. My husband saw the picture and knew that we could make this ourselves, and he did. We got some velcro from WalMart and he adjusted it to fit around my wrist and sewed a simple key ring to it for the yarn to go through. I use an additional key ring around my index finger. You can see how I use it and if you’re a crochet person, you’ll know how it differs from the standard.

Invisible Zee Crochet AidInvisible Zee Crochet Aid 3

 

 

 

 

 

Invisible Zee Crochet Aid 2Invisible Zee Crochet Aid 4

 

 

 

 

 

 

This contraption works perfectly! I don’t have to crook my finger around the running yarn and instead of holding the work between my middle finger and thumb, I hold it between my index finger and thumb. This keeps me from holding it too tightly with my thumb, I think because my index finger is stronger than my middle finger and more used to holding things. And an added benefit has been that I maintain a more even tension and therefore make more even stitches. I also crochet very tightly, but the device helps me to loosen up a little and thus more easily match the given gauge of a project. It even lets me “hold” multiple colors at the same time.

It has been an immense relief to find something that enabled me to continue crocheting without causing myself harm and negating its purpose. Even if I don’t go forward with finding something to hold my work as well, I’m happy with what I have right now!

If you’re a crocheter with a health issue that crocheting potentially exacerbates, what adaptations have you been able to use to improve your situation?

Right Shoulder Pain FINALLY Diagnosed!!!

Standard

At last I know what’s wrong with my shoulder and what I should do about it! I’ve had acute, sharp, and sore pain in my right shoulder since April 2014 without any inciting injury. Insurance screw-ups stalled my ability to get in to see an orthopedic surgeon but finally I did. After getting my MRI done (which my doctor wouldn’t order for some reason unless I saw the ortho doc first…), I now know that a bone spur is poking into my rotator cuff tendon causing tendinitis (or is it tendinosis?) and bursitis, which further causes problems by narrowing the space between muscle and bone that the tendon has to go through.

The orthopedist recommends surgery. He says it’ll be a quick and easy surgery with a couple of incisions where he’ll clean out inflamed tissue and remove the bone spur. He even said I’d be able to drive with that arm the next day or so, though I will have to do a little physical therapy. Nonetheless, I am a bit alarmed because I have NEVER had surgery (I don’t really count my wisdom teeth removal) nor broken any bones or had any kind of major injury. Chronic pain has been my thing for years but now I’m faced with tangible problems and fixes. It’s weird and I’m not sure how I’m reacting to the whole thing. Glad I got diagnosed though and that a real and known problem was found.

I’ve also made progress on my knee problem. I’ve started physical therapy and am doing home exercises to strengthen the muscles on the left side of my knee so that my knee cap moves over the center rather than the right side, where it puts more pressure on the cartilage and bone. It’s only been 2 weeks, but already I feel a difference in knee pain so I’m grateful for that.

The really scary thing is, I might (and probably already am, judging by how it feels) develop the same problem in my left shoulder. Not to mention I think I might have the same issue in my left knee as in my right knee. I just keep on breaking down. Just like a well-used car, I fix one problem, and another issue springs up! Eventually you would give up on the car, but we chronic pain sufferers DO NOT have that option.

In the words of Commander Peter Quincy Taggert in Galaxy Quest:  “Never give up. Never surrender.” And I do not intend to ever stop fighting the pain and its effect on my life! I will persevere and continue working towards better management of my illness and improved quality of life.

 

Forced Hiatus

Standard

 

I have been forced to go on hiatus (or hibernation, really) for the past couple of weeks because of a flare-up of fatigue. It’s times like these when I wonder whether or not I have Chronic Fatigue Syndrome, whether instead of FMS or along with it. I often consider this muscle-withering, spirit-sapping, energy-eradicating, and brain-muffling fatigue to be much worse and more difficult to deal with than the pain. At least with the pain, I have a chance to work through it or maybe only experience a flare in one body part. But with fatigue, my whole body is encased in and weighed down by exhaustion. And depression and lowered self-worth soon follow. They say that misery loves company. Well, so does fatigue! I finally broke down last night and cried a bit. But my husband was there and comforted me and reassured me how much he appreciates and values me and everything I do for him/us. Nonetheless, I still feel fairly useless…

But, I know better than to become mired down in such negative feelings because not only do they not make the situation any better but also emotional stress leads to increased pain and fatigue, which I DEFINITELY do not want to happen. So, my husband and I have resolved to have a frank and proactive discussion about adjustments we can make to make weekdays easier for the both of us. And hopefully, my appointment with the rheumatologist, which should be set up soon, will give me some options for treating my fatigue.

I also have trouble with this particular symptom because when it’s this bad, I can barely get out of bed to manage my basic needs. The cycle of negative thoughts and self-image is perpetuated by this lack of self-care and further feeds the depression and fatigue and inactivity.

How can I fix this or help myself do better during these times? Well, I have noticed recently that sometimes when I’m fatigued but still attempt to do something I need to get done, I don’t feel much more tired afterwards as I always expect to. Part of what prevents me from getting out of bed is the fear that activity will only make me feel more tired and worsen my muscle aches and soreness. But in such instances as the one mentioned before, I know this not to be true, at least most of the time. So, I’m determined to train myself not to have that negative mentality and to make myself accomplish one good, useful thing a day. And when my “fatigue-self” protests, I can tell it that I have all the rest of the day, hours, to “recuperate” from the activity and so it shouldn’t complain!!

Plus, accomplishing one activity usually spurs an emotional boost, which can give one the motivation to get something else done. But as long as you only focus on one thing at a time, you aren’t overwhelmed and bogged down by the stress and pressure of all the myriad chores, errands, and activities that you need to do.

I think that the first step to overcoming fatigue that you can do on your own, is re-train your thinking and stop negative thoughts in their tracks. Give yourself credit for even the littlest things you have been able to accomplish and focus on one thing at a time. Doing this helps me to not feel so overwhelmed and I’ve just gotten away from it lately. Also, do things that help take your mind off of your inactivity–read an exciting book, watch an uplifting show or movie, do a hobby (like crocheting) that does not require the use of your entire body–and help keep you encouraged and positive. Prayer and spiritual reflection comfort and strengthen me while reading dramatic sci-fi novels, watching British mystery shows, and crocheting help to distract me. What successful steps have you taken to stem the effects of fatigue?