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Siobhan’s Fight Like a Girl Story (Fibromyalgia, CFS)

by 11 Comments
Dec
15
2012
Fibromyalgia / CFS Power Story

I am a silent sufferer of fibromyalgia and CFS. People think I am lazy. When I tell them that I am a sufferer of these disorders, they roll their eyes, let out a chuckle , or just try to appease me by saying "oh, really?" I would like to give these disorders more publicity. I think people think that they are fake. I struggle to get through each day as the fatigue takes over. I am close to tears by 3 pm. I have to still perform the duties of mother and wife. My husband and kids get angry with me because I am always tired. I am fighting like a girl every day to do normal activities. There are probably 2 people in my life who understand and ask me how I am feeling. I need to bring some awareness of the pain and fatigue that I am suffering to all the people in my life. Siobhan Massachusetts Submitted 2-9-12 The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a … [Read more...]

Filed Under: Chronic Pain Stories, Fibromyalgia Stories, Stories Tagged With: , ,

Lisa Anne’s Fight Like a Girl Story (Panhypopituitarism, Autism, FM/ME/CFS)

by 3 Comments
Jun
09
2012
Lisa Anne’s Story LR

My fight like a girl story begins directly from the womb, but I wouldn’t have to fight seriously until I was 10. I was born with a rare pituitary condition called septo optic dysplasia which caused my pituitary to not be able to keep up with my growing body. I was diagnosed with growth deficiency at the age of four and started growth hormone shots. When I was older, between the ages of eight and 10, I was getting a bit heavy for my short frame and that’s when they diagnosed me with hypothyroidism. Between the ages of 10 and 15, I had some very scary life-and-death experiences with Addison’s disease and adrenal crisis which led to seizures and actually "dying" a few times. When I was older, I started female hormone replacement.  Not for it's regulating my system but more because the medication for Addison’s disease eats bones, and calcium and vitamin D are better absorbed with female hormones.  I did have significant bone loss already. I take massive amounts of meds daily … [Read more...]

Filed Under: Growth Hormone Deficiency Stories Tagged With: , , , , , ,

The Increase of Fibromyalgia/CFS in Young People

by 10 Comments
Oct
31
2011
healKick-big-300x98

Is it just me, or are more and more young people getting diagnosed with Fibromyalgia and ME/CFS?? Both have been stereotyped for so long as being illnesses that only afflict older people, but as someone who is active on twitter, I'm finding so many teens that are already diagnosed with these problems! I can relate to this a lot, as I became very sick at the age of 13. I have no idea why this illness is spreading the way it is, but we need so much more research!  If only we could manage to get out of bed long enough to spread the word!  That's why websites like this are so very important.  The Fight Like A Girl Club lets us get these thoughts out there and hopefully more people will read and learn about these illnesses and want to get involved! There is a Facebook page for young people who are suffering with these illnesses right here:  Young People with Fibromyalgia. Also, Healkick, is a new website for people under 40 with neuro-immune illnesses.  I recommend that if … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , , , , , , , ,

Sara’s Fight Like a Girl Story (Myalgic Encephalomyelitis aka ME)

by 25 Comments
Sep
03
2011
Sara's Story (ME)

I don't look sick. Often, I don't act it either. "I'm okay" or "I'm fine" are common responses of mine. It's easier for me to block out what I can of this disease than to focus on what's wrong with me. That's why it's also so hard for me to write this post describing M.E. M.E. stands for myalgic encephalomyelitis (pronounced, ”my-Al-jik en-SEF-uh-lo-MY-uh-Ly-tis”). This is more than just a crazy long name. It's a title, a burden, a curse; it's my disease. It's a battle every day to not let this ultimately define and defeat me. This is the sickness that turned my entire world upside down. Everyone has a struggle they are forced to deal with everyday, mine just happens to be in the form of a mysterious disease. I never forget that it could be worse. I try to forget how I used to feel and function, and I try not to obsess over the future. I'm forced to focus on now because I don't know what's going to happen tomorrow. Most of what I'm going to try and explain is … [Read more...]

Filed Under: Chronic Pain Stories Tagged With: , , , , , , , , , , ,

The Medication Situation

by 10 Comments
Mar
29
2011
Medication and Chronic Pain

Many of us take medication to treat Fibromyalgia and ME/CFS, whether it be Lyrica, Cymbalta, Gabapentin, etc...in addition to our routines of light exercise and good diet. Some of us cannot tolerate these medications, due to MCS (multiple chemical sensitivities).  Fibromyalgia almost instantly equals getting all of the strange and uncommon side effects of every pharmaceutical we try.  The instinct is just to run away from drugs, but sometimes the desperation for treatment is just too much. In my case, as someone who felt bad enough to continue down the medication rabbit hole, I have tried almost every med ever used for such problems.  My combination has been worked out of those that I have tolerated, and it's a varied set for sure. Supplements are often added into the mix, or used on their own, in order to provide relief for Fibromyalgia symptoms. The pile just seems to multiply on top of itself. I metabolize the medications extremely rapidly, and end up having to … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , , , ,

What To Do When Pain Takes Over…

by 13 Comments
Feb
05
2011
camus

Desperate times call for desperate measures. Sometimes, Fibromyalgia and Chronic Fatigue Sydrome have me beaten so far down that I cannot even imagine continuing the fight. Yet I know giving up is not an option, so I have to keep coming up with more and more tools in order to cope in these moments of vicious agony/bleak and dreary moods. My illnesses keep getting worse and worse, so I am always expanding this section of my life.  My pain doctor deserted me the other day, so now I will have to cope with the fact that I currently do not have a medication prescribing physician.  I know that EVERY girl/guy on here has had moments in their illness when it is completely overwhelming. So I'm polling the group - what do you do when things get too bad??  Here's what I do: Let myself cry until there are tissues everywhere and I have a swollen face. If possible, order takeout.  Cooking on my poor painful knees is not a treat. SOME kind of pain-easer. Music. Being by myself, … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , ,

Social Media and its Effect on Chronic Illness!

by 13 Comments
Dec
15
2010
we-stick-together

People question me all the time as to why I love Twitter so much.  To them it seems like a huge waste of time, as they would rather cultivate their relationships in person.  As much as I love my in-person relationships, there is something magical about finding your own place in the world (especially if you are a rare breed!). I am a huge fan of social media, and this is a fairly new development.  I have been keeping my own blog for about two years now, which has allowed me to dip my toes into an Internet full of people suffering with the same illnesses as myself (Fibromyalgia and Chronic Fatigue Syndrome).  As time went on, more and more people were reading and commenting on my blog, and giving me fantastic ideas regarding how to live in a world of pain, in addition to making me feel less alone in the world. I was promoting my blog through Facebook when I decided to dip my feet into Twitter in the hopes of further exposure.  I started and I've never been able to … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , , , , , , ,

Gifts Ideas for those with Fibromyalgia and CFS!

by 24 Comments
Nov
11
2010
TREE

Since Christmas is coming up (or any holidays you celebrate!), I thought I would write an article on great gifts for people who are suffering from Fibromyalgia or Chronic Fatigue and Immune Dysfunction Syndrome.  We have slightly different needs, so tailored presents are MUCH appreciated! Super comfortable pajamas!  Many people with these illnesses have excessive skin pain, where it seems like even the air hurts (including myself!).  Try to get something in a cotton/modal combination - this is a great example: http://shop.nordstrom.com/S/3146013?origin=category&resultback=600. Slippers/a robe/a blanket (or some combination thereof!).  Most Fibro and CFIDS patients are always cold or hot.  When cold, a little extra protection is needed.  Again, look for the softest and warmest materials you can find.  I have two robes, several pairs of slippers, and a leopard print snuggie (which I totally recommend haha)! This is a pricey one, but an iPod Touch.  I can't even … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , , , ,

The Invisible Illness Fight (Like A Girl!)

by 9 Comments
Sep
14
2010
invisible illness

I always wonder who will win this fight. ME VS. INVISIBLE ILLNESSES. I'm not going to lie - invisible illnesses seem to have the upper hand right now.  But, this fight has been long and is hopefully nowhere near over! I know I need to start a different treatment regimen.  Sadly, as someone who suffers from Multiple Chemical Sensitivity (MCS), every single time I place a pill in my mouth, I risk the unthinkable. I've become desperate at this stage.  I will try just about anything these days so that I can feel partially human again.  I miss the days where I could afford to be picky regarding my medication. My touch, vision, and hearing are now all so hypersensitive, I can hardly stand it.  I have no sense of smell and virtually no sense of taste. The fight isn't over invisible illnesses.  Not by a long shot.  I have  my eye on you, even if most of the world remains blind.  I will FIGHT LIKE A GIRL. Most of the population has at least one type of invisible … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , , , ,

Dealing With Naysayers

by 19 Comments
Aug
26
2010
Keep Fighting Girls!

Today my feelings were hurt as a result of another person's actions towards my illnesses.  This is fairly common in my world, much to my dismay. You see...a large portion of the common public still view Fibromyalgia and Chronic Fatigue Syndrome as forms of mental distress. Some have been known to call them the 'yuppie flu'.  There are still medical practitioners behind on the research who believe similar things, which has led me to spend most of my life with a psychiatrist, with absolutely no pain management. I have lost friends as a result of not being able to act like a 'normal' 23 year old female (which is apparently bars, partying, malls, and the like? - I probably just need new friends haha).  I have lost boyfriends, who have determined I am too high maintenance.  I have family who choose not to speak of the illnesses, and instead just look right through me. I am a firm believer in harnessing your demons, and Fibromyalgia, Myofascial Pain Syndrome, and ME/CFS haunt … [Read more...]

Filed Under: CFS, Fibromyalgia Tagged With: , , , , ,