Fibromyalgia and the co-morbid Endometriosis

Feb
21
2012
Fibromyalgia and Endometriosis

It's true that when you get a serious illness, co-morbid illnesses always follow. Now I also have to fight like a girl for Endometriosis.  I didn't see it coming, as I had seen so many doctors for my pelvic pain and had been dismissed (probably for being a girl who presents with a large number of illnesses...).  Finally, I went to a surgeon, who is the only doctor who deals with sexual problems on the side of his main practice in the area.  I went in expecting sexual therapy advice, and instead, he listened to me and immediately scheduled me for surgery. I rarely listen to my answering machine messages, so I found out on a Wednesday that my surgery was going to be Friday morning.  It was probably better like that, as I would have had too much time to think about the situation otherwise.  I came out of surgery in extreme pain and once the doctor came around he told me that there was indeed a reasonably serious case of endometriosis causing my pelvic pain.  I normally … [Read more...]

The Increase of Fibromyalgia/CFS in Young People

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...]

Fibromyalgia and the Change of Seasons

Aug
25
2011
Fibromyalgia and the Four Seasons

I'm positive that I am not the only one who feels pain differences depending on the weather around me. Winter is a particularly hard season, as the weather here gets terrifyingly cold.  My joints just seize up, my temperature regulation becomes a problem, and I just want to spend the entire time in bed, hibernating like a bear!  Sadly, I can't do that without feeling terribly unambitious.  The heating pad definitely plays a high role in the winter, in addition to the pain medication I own. The rain is another problem.  My body ALWAYS lets me know when rain is coming.  I can feel it everywhere - in my joints, in my muscles, and even in the slightest shift of air temperature.  There is rarely a rainy day where I feel like leaving the house; instead, my worst days are usually the rainy days.  Definitely the perfect time to curl up and zone out to a simple television show in the hopes of not moving and hurting. I wish I could say that the summer works out much better for … [Read more...]

Accepting the Word “Disability”

Jul
22
2011
fibro

I've known that something was wrong with my body since I was able to think. I fought against this theory for a LONG time, especially when I was younger, and had more fight left in me.  Sadly, after I finished my education, it was time to face the fact that I was, in fact, unable to work to support myself.  I will forever be grateful that I have the most amazing and supportive family, as well as a wonderful partner.  They kept me alive when I didn't think that I was going to make it. Thankfully, with a change in doctors, and subsequently medication, my Fibromyalgia is behaving better.  I recently got a diagnosis of high-functioning Asperger's, which has helped me realize just why I've had such bad luck with work. Yesterday, I became a member of the PEI Council of People with Disabilities.  I'm a health activist with a lot of skills, and I want to be able to use them.  By having a case worker, it's possible that I can find employment where the employer knows exactly what … [Read more...]

Keep The Light In Your Life, Despite Fibromyalgia and ME/CFS

Jun
29
2011
hydrangeas

When you first get hit with Fibromyalgia and/or ME/CFS, it seems like your entire life is being brutally robbed.  Sometimes a vast amount of it is stolen. I mean, I've managed to lose the ability to work, the ability to smell, the ability to drive, and the ability to stay awake for more than 5 hours in a row! But for all we lose, we also gain the ability to find other reasons to enjoy existence.  I've started to enjoy fashion and interior decorating, as well as blogging and coloring.  I'd love to be able to garden, but I haven't quite figured out a body-friendly way to accomplish it. I have been aiming to live a more environmentally friendly lifestyle, which gives me a sense of peace and joy, as I love the country.  I love to watch films, read or listen to books, and flip through magazines (when my hands or brain aren't giving me too much trouble!). The most important thing that I have done since becoming ill is putting my experiences on the front line for everyone to … [Read more...]

Fibromyalgia and Narcotics

Jun
08
2011
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What can I say about narcotics?  Doctors hold them close and virtually never let them go due to rampant usage as recreational drugs. They will try ANYTHING first - and as well they should, as it isn't healthy to be on a narcotic diet for life. Back when I was 13 and developed Fibromyalgia, all I had was plain old Tylenol.  I most certainly swallowed those to the 8 a day limit regularly.  I eventually got bumped up to NSAIDs, but they just made my stomach a giant mess without easing any pain. I then moved to antidepressants, which eased the pain somewhat, but eventually my drug tolerance wore them down.  I tried all kinds of epilepsy medication and antipsychotics, which the psychiatrists thought would ease this mental pain of mine (even though it was mostly physical...).  I truly believe that some of those medications actually made me dramatically more ill. Lyrica and Gabapentin were next on the list - I wasn't a big fan of Lyrica as it gave me constant headaches, but … [Read more...]

May 12 is Fibromyalgia Awareness Day!

May
07
2011
12

Fibromyalgia, in a large part, now controls my life. In fact, it gives chronic pain to more than 10 million Americans, and 3-6% of the global population (most of whom are women, but can also effect men and children).  Fibromyalgia is also common in families, and my family is no different.  My father and several aunts and uncles either have diagnoses or suffer with the same complaints. These people are often stigmatized by those in the population (including healthcare) who are uneducated and believe the illness is just: faking it, being lazy, etc... Fibromyalgia sufferers are often left without adequate pain management and with emotional abuse from their doctors. A portion of us are truly disabled and yet do not receive any kind of disability support from the government. Research is being done, but there is still very little known about the underlying causes, despite the finds of many overlapping symptoms. According to the National Fibromyalgia Association, "most … [Read more...]

My Review of The Ultimate Guide to Sex and Disability

Apr
23
2011
sex

I purchased this book a few weeks ago, as I have been having some serious problems with intimacy due to my pain-riddled body. As it is such a taboo topic, I thought maybe a book would explain the situation more clearly, and perhaps give me some suggestions on how to feel remotely attractive (as chronic illness does not equal sexy feelings!). The book is excellent for breaking down myths about sexuality and those who have disabilities and chronic illness. It teaches you that just because you don’t have the same interpretations and sensations as before, doesn’t mean that there aren’t still places on your body that will respond favorably to touch. As someone who used to work at an “adult” store, I didn’t need much help in learning about the wide variety of toys that can be used. However, for those without that background knowledge, I think it could be a very helpful set of suggestions! My favorite part of the book were the exercises at the end of each chapter. … [Read more...]

The Medication Situation

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...]

The Strength of the Human Spirit

Feb
25
2011
revolution

It never fails to surprise me just how far people will go to fight for their life and their rights. This is particularly at the front of my mind due to the revolutions in Egypt and Libya, as well as the fact that I am reading A Long Way Gone: Memoirs of a Boy Soldier by Ishmael Beah. So many bad things rock our world - war, poverty, illness - and yet so many of us will lay it all on the line in order to pick ourselves up and keep on going. My Fibromyalgia and ME/CFS are getting to the point where it is almost unbearable every single day to simply live.  All of my symptoms seem to be taking a turn for the worse.  But I'm not the only one experiencing a severe downward spiral right now...and those who are have been handling their situation with incredible bravery and willfulness. I just hope that I can handle my struggle with such strength.  I want people to hear our stories of survival against the odds.  We are all staging a revolution against our own body's dysfunction, … [Read more...]