The Collateral Damage Of Fibromyalgia

First, Shame on me! I am so very sorry fellow fibro sufferers and other readers that I have gone so long without a post. My world blew up at the first of the year and I am just going to leave it at that statement. Suffice it to say, it has taken me until near Valentines Day to feel human again. Since this is not a blog on depression, anxiety and since those subjects and the events that happened around New Years (the things that happened had nothing to do with my husband, family, etc; just  things that overwhelmed, not just me, but even my calm husband), let me just say this: I really would have taken that five day migraine during New Years 2012 over what we went through New Years 2013. In any event, I promise, unless I am physically unable, I will never let this amount of time go by again without a post. This time, I want to touch on the collateral damage of fibromyalgia. Believe me, there is a laundry list.

So far I have discussed what life is like with fibromyalgia and who can get it (basically anyone). Now I would like to touch on the ripple affect or, as some might call it, the collateral damage of fibromyalgia. It is not just about pain. Fibromyalgia is characterized by widespread pain all over the body. The patient must have 11 of 18 trigger points for a long, sustained period of time to get a positive diagnosis. Fibromyalgia may also exhibit the following symptoms

  • IRRITABLE BOWEL SYNDROME
  •  OTHER ABDOMINAL DISCOMFORTS SUCH AS NAUSEA & BLOATING
  • CHRONIC HEADACHES
  • INSOMNIA
  • SENSITIVITY TO EXTREME COLD AND HEAT
  • SENSITIVITY TO: SOUND, LIGHT, TEXTURES, COLD POOL, CERTAIN FABRICS, SMELL, ETC.
  • CHRONIC FATIGUE
  • BRAIN FOG
  • STIFFNESS: BOTH MORNING & WHEN STAYING IN ONE POSITION TOO LONG
  • FACIAL TENDERNESS (MYOFASCIAL)
  • DEPRESSION & ANXIETY
  • NUMBNESS & TINGLING: ARMS, LEGS, FACE & HANDS

With this long list, it is very easy to see that fibromyalgia is much more than pain. In the last day, I just recovered from a two day migraine headache. In fact in my case, a fibro sufferer for nearing twenty years, the syndrome has progressed to the point that is has taken control of my life. Besides pain every minute of every day, I have every symptom on the list above. There are no good days…. only tolerable, bad and miserable. I try my hardest to maintain a positive attitude, but when you are lugging never-ending pain and a bag that full of side effects around…..along with extra neck pain from several tangible issues (things you can see on scans that can possibly be treated with therapy, surgery, etc.), it is difficult at best to be ‘positive’. If you are healthy or at least for the most part healthy and / or in the early stages of fibro (it is my experience that it a very progressive condition), try to imagine your worst flu when you ached all over. Imagine a time when you exercised too hard, painted the house too long or just plain did something that made you aware you had muscles in place you did not know existed. You felt like a human pinata after a gaggle of 5- year- olds beat the candy out of you. That is my life everyday. Now add a gut that feels like you did not pay your ‘loan shark’ and he decided to belt you a few punches. Imagine your husband has to fill in every fourth word in each of your sentences because your brain fog is so thick or you suddenly revert to kneeling like you were Catholic again each morning because you roll out of bed onto your knees, slowly push yourself out with a serious of “Owe, owe, owe…. owe….. owe!” Imagine walking with a cane before you even hit your fifties. Imagine shaking your hands numerous times a day because they are so numb they are in a constant state of pins and needles. Imagine dropping one out of two things you pick up. Imagine having to sometimes take 50-100 Immodium a week because of your IBS. That cannot possibly be good for you. Imagine the only time of day you have with your husband and crashing and burning because you overshot your energy trajectory for the day and ‘hit the wall’. This is my life, day after day, week after week, month after month, year after year. So, if I don’t seem like the most positive peach in the basket, forgive me, but walk my walk for a day, or just a few hours and you will understand.

The tangible damage is not very common but can occur when you are diagnosed very young like I was. My first symptom was numb hips, my second, neck pain. When my neck was X-rayed, they found the kyphosis (reverse curve) in my neck straight away. I was thirty one years old. However, I had noticed my first symptom at age thirty. Once they found this, and the specialists looked at this (not knowing yet I had what was then called ‘fibrositis’), I was told within twenty years I would have bone spurs, arthritis, degenerative disease and likely have some discs that would herniate or at least bulge. I have all those and more. The reason? I have such extreme muscle spasms in my neck, you can see the knots just by viewing my neck. The spasms pull on my Cervical Spin like the bow part of a bow part of a arrow. The neck can only take so much ‘pulling’ for so many years before it starts showing wear and tear. Now I am facing Anterior Cercical Discectomy And Fusion surgery

http://en.wikipedia.org/wiki/Anterior_cervical_discectomy_and_fusion

This is a bear of a surgery and only one Doctor in my area of about 300,000 with two large teaching hospitals would even agree to take my case. The other ‘big wig’ spine specialist in the area bowed out when he said I had the worst kyphosis he had ‘EVER’ seen in his career. So when you wonder why my shoulders lean left, why I am always turning my neck, why Paul is always rubbing my neck (it is nothing creepy, trust me!)…. you know why. This is a true case of  ‘scans do not lie’ and I know that the Doctor’s who told me this two decades ago were not ‘fortune tellers’ but rather educated specialists forewarning me of my neck to come.

I think the worst collateral damage of fibromyalgia is the stigma related to this condition. First there are still the back-woods people that ‘do not believe it is real’. Since 99.9% of every Doctor now agree, yes, it is very real and it is recognized by all health care professionals world wide, it is listed on everything from insurance forms to the DMV forms to  new patient forms at Doctor offices. It has been the subject of countless articles,TV shows, news spots, medical journals and newspaper articles.

The other stigma is family and friends. There is nothing more frustrating than to hear someone say, “I have fibro and I just ‘push through the pain’, I have no choice”. I pushed through it too. I worked for years, as long as I could. I drove one hour each way and started getting a pile of traffic citations and pull overs. One time I was stopped for weaving. I was as sober as a newborn and the cop knew it, but also knew I was exhausted beyond being safe to drive. He stayed there until my husband picked me up.  You do not embellish that level of exhaustion and no, it was not my medications because they do not make me sleepy…. if anything I have a problem getting enough sleep until I get so exhausted, I have a ‘crash and burn’ one day and take an eight hour nap.  Now I make this very clear….. my rollover was an accident, my tire blew and I was not cited in that by the police because they were aware by the car, marks, etc that it was an accident and not a driver fault situation. Luckily today, as a full time disabled person, I do not drive unless I am fully rested and our insurance just dropped as many of these citations dropped off my record. We actually checked around, got a better price and it is now $70 less a month ($50 dropped off a month with old insurance). However, this is just another example of not only the collateral damage, but when you go from workable to disabled that you do not have to risk driving while tired. My fibromyalgia is not ‘your’ fibromyalgia. My treatment protocol  has been carefully molded for me.  Just as your treatment protocol has been carefully chosen for you. Because I am post gastric bypass, I cannot take NSAIDS (aspirin, ibuprofen, aleve, etc). This is a challenge but I would rather have a lower body weight than be able to take ibuprofen. So it is not right to assume I can ‘push’ through it when I would collapse from exhaustion. I know my limits. I have walked this walk for 2 decades and have impressed numerous Doctors, LNP’s and other health professionals with both my knowledge of my health  including having a list of my medication typed and ready for new providers during my first visit to a new Doctor. My pain is not your pain. My fatigue is not your fatigue. When my Mom passed, I spent those days in California in an exhausted haze. My body was already behind by being three hours (time zone) ahead, but one of the nights (it was a Saturday; the night before the memorial and also before I would fly out of LAX Sunday night to come home on the Red Eye). My cousin Shelly called and told me to come over to her house. She was having a get together and frankly I could have used some fun and laughs. My soul was so… oh soul willing, the body; not so much. She told me to grab a Red Bull and come even though I was exhausted. I told her I had been in wrecks when I was this tired. She understood. I grabbed a Subway, went back to the person’s house I was staying with (my Step-Sisters/Brothers Mom) and ate, only not so much as my hostess found me at  8 PM asleep over my sandwich. That is my exhaustion. Granted it had been both a physically and very emotional few days, I was spent. Shattered. I spoke to my husband for a few minutes after awaken and slept from 8 30 until the next morning…… unheard of for me. It is frustrating to be misunderstood…… to be judged….. to worse, have people think you are a ‘drama queen’ or ‘attention seeker’. No. Frankly I do fine with NO attention. However, I will not stop in raising fibromyalgia awareness until people understand and accept this condition the same way they do MS, lupus, diabetes, heart disease, or any other disabling, life-altering condition/disease.

One last thing I would like to touch upon is how fibromyalgia affects your marriage/relationship with your partner. This depends on both people. First, I am married to a saint. My husband Paul works two jobs. He works his forty hours at his “nine to five” job and also delivers pizza two nights a week, on the weekends. It does help that he likes both his jobs….. I have never seen him dread a day of work, ever. However, that is quite a few hours he puts in, without complaint. He also helps me around the house. I tried to pick up a lot of the slack, but I just cannot do any of the heavy cleaning. He pitches in, cooking, laundry, pooper scooper for the cats, etc. without complaint. Then, at the end of all this, he tirelessly rubs my feet, shoulders, neck, arms….. whatever is hurting most that night. Several Christmases ago, he bought a book on reflexology for me so he could learn this ancient art. Who does that? He bought a book for me so he could learn how to sit there all evening and rub feet while their spouse says, “Tonight I need you to hit my gut receptors”. In the same sense, I encourage Paul daily. I try to lift him up for all the wonderful things he does. I encourage him all the time to get time in for his hobby, black and white film photography (and boy, is he quite good at it!). Time is one of our tightest assets so I really do encourage him to try and get some pictures in and make sure he has time to sit in his cave several nights a week… even for half and hour and work on editing his pictures. It runs both ways. It is imperative that a fibro sufferer have a supportive partner, but the fibro patient cannot ‘hog the blankets’ and must be supportive of their spouse/partner and give that person time away from just standing by and watching the person they love most hurt so much and not be able to do a thing about it. It is very hard for them….. especially men as men are ‘fixers’ and want to fix this problem.

I wish I had great words of wisdom and comfort. However, I don’t. I do have a friend that went into a complete remission with fibro and to this day remains fibro free. I actually went into a short (about 6 month) remission….. it was wonderful…. and I will say the common denominator with my friend and myself is that she was taking Lyrica and so was I at the time. However, Lyrica has the potential for weight gain and I was not real happy with it for a few other side effects, so I quit. That was my experience. I want to stand clear, I am not saying Lyrica is a ‘bad’ drug and if for no other reason you have never tried it, you may just want to run it past your Doctor.

I will say fibromyalgia, at least in my experience, is very progressive. I am far worse than I was five years earlier and five years ago I was far worse than I was five years before that. Again, it does not mean it is progressive for everyone, it might just be me. 😉  Maybe it is just because I am not a ‘spring chicken’ anymore…. more like an ‘autumn chicken’. Wherever you are with fibromyalgia, I encourage you to educate yourself, educate, educate and educate. Talk to others with fibromyalgia but don’t get caught up in the people that ‘give up’ (I have not and never will until God calls me home). I am disabled, but would love nothing more than to get my life back. Stand your ground around the hateful people that try to drag you down. Most of all, may the Lord bless you. This scripture from the Bible is one of my mantras. I have been a little ‘upset’ with God lately. We all get mad at our ‘parent/s’ at times. But I am confident that my latest struggle (again, personal but not an issue with family, etc)….. I know He will fix it and it will be OK in its time. Until next time, K.

 

The Faces Of Fibromyalgia

When I was diagnosed with fibromyalgia, in 1996, I was told I was quite young to have the condition, then often referred to as ‘fibrositis’. It was (then) a condition thought mostly affect middle aged women. Today, scientists estimate that fibromyalgia affects 5 million Americans 18 or older. Between 80 and 90 percent of people diagnosed with fibromyalgia are women. Of course the rest of the percentage would include men and children….. neither group is immune to fibromyalgia
Three excellent web sites:
http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp  http://www.prohealth.com/library/showarticle.cfm?libid=15168  http://www.menwithfibro.com/home.html

So who wears the faces of fibro? I am my parents daughter …. so you have to know I can start a conversation with anyone, anywhere, and I do! Let me just say this: There are a LOT of people with fibro out there. And fibro, excuse my language, is an unforgiving bitch.

KIDS ARE NOT IMMUNE!

WOMEN ARE THE NUMBER ONE TARGET OF FIBROMYALGIA

Right now I am in the throws of a flare. As my husband puts it (so well, I might add), I have an energy bank account. Fibro depleats it very quickly. So lets say I sleep an extra hour or two or take a nap to try to catch up, but on nights like this one where I have now been up for two hours (2 – 4 AM so far), I go and pull from that bank and over-draw it again. If it is already over-drawn I just go more into the red. It is an endless cycle of trying to catch up with sleep but instead of getting a good 7-8 hours straight each night, I am getting 2-3 hours here and there. It just is not the same.

WHILE IT IS LESS COMMON FOR MEN, THEY ARE NOT IMMUNE TO THIS SOUL CRUSHING MALIDY

The faces of fibro that I have met: several cashiers at various stores I go to; either they have it or know someone who has it. The people in line that you talk to when the line is backed up. Church family that know and /or are related to someone who has fibro. Your Facebook chronic pain family that is a closed group so you can talk openly without fear of being labeled a “Debbie Downer” or “Negative Nellie”….. and contrary to what people *want* to believe, we don’t sit in there and moan and groan all day….. this bunch of people has shared some of the funniest and most uplifting stuff I have ever seen! So don’t judge if you don’t know the whole story!  The other day a man, about early to mid thirties; looked as healthy as can be; after listening to me ask for help with a couple of heavy items because “I have fibromyalgia” and (not because I am lazy)….. he told me he has fibro and went through disability. He was one of the lucky few…. got aproved on his first go. Me, naw…. I got that grey cloud that stays over my head. But that is (not) OK…. it is what it is… government BS, because I expected 1st denial 2nd get an attorney…. which I am now waiting for my hearing. I have to renew my disabled placard for parking every 6 months and this will be my 3rd card when I go get the form tomorrow as my 2nd one just expired.

BECAUSE PEOPLE PRE-JUDGE & JUDGE BY NATURE, THIS IS GENERALLY THE FACE THEY PUT WITH FIBROMYALGIA. THIS IS A STEREOTYPE.

RICH, POOR, HEALTHY, HAPPY….. IT DOES NOT MATTER; FIBROMYALGIA DOES NOT CARE! THERE IS NO ‘TYPE’ OR ‘CLASS’ THAT IS AFFECTED. NO ONE IS IMMUNE AND NO ONE IS DESTINED TO GET IT IF IT RUNS IN THE FAMILY. MORE RESEARCH IS NEEDED!

The faces of fibro are everywhere….. places and people you would never guess… even children (that one gets me the most as I would not wish this on….Mmmmm Most people )…. Sorry….. I know bad… Ok, I would not wish this on ANYONE; EXCEPT! Those who doubt or say it is ‘all in your head’, ‘it does not exist’, ‘ you are being a drama queen’, etc. I then wish 1 week of pain scale 6+ fibro so you can *then say* that is ‘does not exist, is not real and then see who is being a drama queen’. I then wish it to leave you forever but not ever forgetting what it is like to feel every minute of every day like you have been beat with a broom handle and some days like you were beat with a baseball bat. It is very rare today to find a Doctor that ‘does not belive fibromyalgia exist’. Rare and usually law suit worthy. Even Dr. Oz is 100% behind those of us with fibro.

BEING A HIGH RANKING BUSINNESS MAN DOES NOT MAKE YOU IMMUNE

BEING GORGEOUS, SUCCESSFUL AND CONFIDENT DOES NOT MAKE YOU IMMUNE

So next time you are grocery shopping, at a ball game, a concert, a PTA meeting, a waiting room anywhere…. note someone in that room, store, stadium, etc likely has fibromyalgia. Remember, not all disabilities are things you can ‘see’. I have gotten the ‘looks’ when I park in the disabled space that say, “You don’t look disabled”. No, I probably don’t, but you don’t know me and the race I run or the life I lead or the pain I feel. Not all scars are visable. And not all faces of fibromyalgia are who you think they would be.                                     

Fibromyalgia Awareness!

It is finally here! A day for ‘us’. Fibromyalgia Awareness Day is upon us or it is officially Saturday May 12, 2012. It is about time a day has come around to be dedicated to those of us with this unforgiving condition. So for those of you out there who still think fibro is not real, let me tell you about a day in the life of fibro.

It is 2 30 AM as I type this. I have a *big* day tomorrow… a very taxing day. Yet pain is winning again and sleep is fleeting. In all fairness, yesterday I hurt so very badly through my neck and shoulders and  As chronic pain patients, we are told to rate our pain from a one to a ten. I am rarely, if ever, below a seven. Once in a very blue moon I maybe get to a six or six and a half. A couple months ago I had a ‘good week’. My pain levels were about a six for three days in a row. It was wonderful! Now bear in mind someone without fibro would consider a five very uncomfortable. For me, it is a walk in the park. Remember, I speak not just for me, but for the many friends I have made that also suffer and the millions of others I don’t know that are sitting up at 2 AM and 3 AM, etc. We all understand each others pain and embrace each other as sisters and brothers in this fight.

So why no cure? I was diagnosed in 1996, but started getting the symptoms in 1993. So I am a near twenty year veteran to this ugly condition and no cure is anywhere in sight. I have seen treatments and theories evolve. Some make sense and some do not make any sense. However, I do not think we have come far at all. If we had come far, I would not be sitting here (now) after 3 AM writing this blog. I am happy to be writing…. it is my favorite thing to do. It is just that I would rather be sleeping right this moment. My theory on why there is no cure is simple: it rarely affects upper middle class white men. I realize that sounds a bit harsh and even borderline hysterical, but I have had numerous people agree with me.

So what does someone say to the fibromyalgia patient in their life? Whether someone close to you has fibro or it is your neighbor or co-worker, let me give you a few hints.

1. Remember, most fibro patients are also horribly fatigued, pain takes a lot out of your body and does not leave much energy in reserve, so if the fibro patient in your life has to ‘cut out early’, don’t tell them to get a energy drink and deal. Remember, they WANT to be having fun! Believe me! They don’t want to be asleep by 9 PM, but sometimes it just cannot be helped. Just understand and say ‘we can do ‘this’ next time’. I have had people CLOSE to me, in the past,  actually talk behind my back about falling asleep, etc (this is before my Dr disabled me out and I was working 40+ hours a week at a highly stressful job with a 2 hour daily commute). It is hurtful to think that someone who loves you would judge you like that.

2. Don’t try to give well meaning suggestions. We all know you mean well. However, we are in a very good relationship with our Doctors (note the plural because most of us have at least 2-3 Doctors working together; I have four that work on my fibro, alone). We have studied and tried everything there is and know what works and what does not.

3. DO NOT say, “Just push yourself”. Pushing ourselves means setting up, on the low end, for a flare, and on the high end for something dangerous like an accident. I *NEVER EVER* have had good outcomes when I “push myself”. Just ask my husband if you do not believe me.

What TO DO is 🙂

1. Just be an understanding support person. You don’t have to say you are sorry….. just understand when I or my fellow fibro sufferers have to ‘sit this one out’ or call it an early night. My best girl friend in the world drove 6+ hours to spend a long weekend catching up. She was so very understanding when I had to take a cat nap each day and when I was down or the count well before midnight (maybe even 11 PM) each evening. She understood and it was wonderful.

2. If you are in a position to help with some tasks and can offer a hand here and there, do so.  Call, visit and please, please, please *do* include your loved one in any and all activities even if you think they may be too taxing. The fibro patient knows their own limits and will let you know if they can join in or have to decline.

3. Finally, visit your loved one often, especially if they have gotten to the point that they are disabled. Fibromyalgia patients used to function at 100% and on the same pain scale as everyone else. Now we live in a skewed  view where a 6 pain day is a ‘dream’. Our lives are imprisoned because this disorder makes the call on everything. I spent a couple hours at a kite festival a few weeks ago and spent the rest of the weekend paying for it. I am still glad I went as two hours of fun with my husband was worth it. Time with my family is *ALWAYS* worth any flare, extra nap, etc. Always.

So, today please take a moment to remember those of us that hurt all over, all the time. Remember the last flu you had? Remember how you ached all over? That is pretty much how fibromyalgia is except you add brain fog, IBS, muscle spasms and a host of other co-symptoms. Please pray with those of us who have it that a cure is found someday soon. Meds are ‘ok’ but not nearly as great as a full cure. Plus, the meds only lift some of the pain….. the pain is always there throbbing away. It never ceases completely. Say a prayer that a cure or fibromyalgia will be found soon. Next time you get a chance, do a random act of kindness, say something kind, or better yet, visit someone you know who has this horrible malady. The more people are aware, the closer we are to a cure.

The Disappointments Of Fibromyalgia

 

SOMETIMES I JUST WANT TO RUN OUTSIDE AND SCREAM AT THE TOP OF MY LUNGS. FIBROMYALGIA AND THE COLLATERAL DAMAGE IT LEAVES CAN BE DOWNRIGHT SOUL CRUSHING

I was going to write about some of the treatment options of fibro on this post, but I will save that for another time. Instead, I would like to touch on the many disappointments associated with fibromyalgia. This is not just from my standpoint, but from the view of family and friends of the many people this horrible condition touches.

On Saturday, April 21st,  my husband and I attended a kite festival at a close by park. The photography club we belong to had a ‘scavenger hunt’ …..a list of things both concrete and abstract to photograph and then report back with your pictures later, posting them on the web site! It was beautiful. It was on the warm side, though rain was set to come in later that day, one would never know it by the hot day and Paul’s first sunburn of the season! 😉 The kites were gorgeous…. all these wonderful kites up in the sky. Big, bright, different shapes and designs nestled against the blue sky with fat, fluffy clouds and the green hills in the background. Families with young children were running with kites, attempting the most difficult task for any flyer; getting the kite airborne. As they made these attempts, you could hear the laughter and cheers fill the air and land in you ears like magic little drips of sound, tickling your sense of hearing in the most delightful way. We were there about 2 hours and had such a wonderful time seeing sites, kites and taking pictures!

     I am sure everyone with advanced fibro knows where I am going with this. No, I do not care that we had to park in  the handicapped parking lots. It helps me retain the little bit of energy reserves I have. However, I did start running out of gas about an hour or so into the festival and found a place to sit and recharge. After about 2 hours in, we had seen all the kites, gotten all the shots we could and Paul was getting pooped (and hungry!), so we decided to go home. We talked all the way home about the wonderful time we had and about how we need to do things like this more (the cost $0)! 🙂  However, I did not know it would totally lay me up for the rest of my weekend. 🙁

     I came across a word a while back that a friend of mine invented. “Flareworthy”. Basically this word means an activity or action that you are pretty sure will bring on a ‘fibro-flare’ but is oh so worthy of a flare. The first example that comes to my mind is my Granddaughter. I if / or when I do flare after chasing her around (and I am not saying I do, because if I ever have… I DON’T CARE!), just using this as an example… but if I ever were to…. it would be a BAZILLION PERCENT worthy of any flare…. no matter how big… ANY FLARE… as my time with my precious Granddaughter means the world to me! Now about the kite festival. It really bummed me out and I was feeling downright melancholy after having so much fun and then feeling so beat. I took a HUGE nap on Saturday then started having stomach problems in the late night Saturday/ early morning Sunday. Once again I had to miss church and I hate that…. I am so tired of missing church. 🙁 And I ended up spending most of Sunday tired,’snoozy’ and generally not feeling well. However, as Paul put it, it was so great to have a couple hours of real fun, outside! So the kite festival deemed itself “Flareworthy”. He stated he enjoyed our two hours so much of sun, fun, kites & laughter, it was all worth it.

     For me, it is just so frustrating to know that anytime I go anywhere, it is likely I will spend the next two days ‘paying for it’. It is OK! Do not get me wrong! I still want to be invited to parties and barbeques…. to showers and festivities and YES, TELL ME WHAT I CAN BRING! 🙂  It is even more depressing *not* to be included. I love to cook and will make it ahead of time! One always hesitates before posting such things as I want to reach out to others in the same boat but I do not want my family and friends to think any different of me in as far as YES, I still want to bring a dish to the get together and YES, I still want to be invited and YES, I still want you to come over…… OFTEN!

     It has really been in the last couple years that my turn for the worst has really gotten bad. I think a lot of it revolves around when I blew a tire doing 50 MPH and my car did a complete 360 degree roll. I was taken to hospital and God was surely watching out for me as I only suffered some bumps, bruises and a nasty gash in my leg…. what I did not count on was Roanoke Memorial Hospital sending me home with a nasty STAPH MRSA infection that would keep me out of work for SEVEN WEEKS!  I spent 3-4 hours a day doing warm compresses on my festering leg. I took big blue horse pills (antibiotics, but even when I had to to take CIPRO, I have never ever seen a wicked antibiotic like that). MRSA is not an infection, it is a WAR! 

CLOSE UP OF THE INFECTION ABOUT 1/2 WAY THROUGH TREATMENT. YES, IT WAS WORSE THAN THIS!

TOWARDS THE END OF MY MRSA RECOVERY. I WILL NOT PUT ANYTHING WORSE THAN THIS; TOO GROSS! I STILL HAVE A BIG ROUND, MUSHY SCAR IN THAT AREA. IT IS OK THO! I AM HERE TO WRITE ABOUT IT!

      I think the second and final straw that broke the camel’s back was my intestine perforation and my emergency gastrojejunostomy. I had been having stomach problems for months. That is one of the reasons my weight dropped SO low and I now see, I looked pitiful! I now see why my Dr’s, nurse practitioners, family and friends that felt comfortable enough kept on me about GAINING some weight. Huh? Never ever in my life did I think that would be an issue. However it was. It took me seeing a picture of myself at 125 lbs and then after getting a bit of weight back on me to see, WHOA! I looked unwell. 10 years older. My tummy issues kept me from eating a lot of things. Sometimes I would maybe take in 700-800 calories a day. Then came the morning of July 1, 2011. I woke up in the worst pain I can remember. My abdomen was distended and hurt worse than labor during childbirth, worse that when I had a retained gallstone which caused pancreatitis causing me to have to have an emergency ERCP to get the stone out . It was THE WORST pain I had ever been in.  Looking back we should have just gone then. However, having played this ‘song and dance’ game with my belly for months and months, I figured it would ‘pass’. Kadence would be having her 1st birthday party the next day…. of all the times of this to happen, it happened the day before my precious ‘Butters’ 1st birthday. I was going to try and tough it out until then. I sent Paul to work. I spent the rest of the day on the couch. I drank a few sips of water. I did not have the TV on. I took a shower and sipped on water and held my middle. That was it. When Paul got home, he ate a bite and off we went to the ER. By the time I got back there and scanned it was 3 AM… BUT, I was in an OR by 5 AM. This is EXACTLY what happened to me. Change the age a bit and the amount of time post RNY and you have a ” ‘zactly”!

http://www.ncbi.nlm.nih.gov/pubmed/17132424

     It does not say on hers, but for me, I was in ICU for 3 days with an NG tube (forgive my ‘French’ here, but the most miserable son-of-a-bitch ever created in medicine) had that thing for 3 days. I was in the hospital a week though I think he would have kept me longer except I was begging to go home. I was about to check myself out so I think he let me go but I was to see him twice a week for a while. I am starting to have issues again and frankly and frightened. I am keeping a close eye on everything….. so we shall see. I just pray it is the IBS associated with the FBS/CFS and not another problem like this that is the cause.

I feel the car rolling/ MRSA and the emergency surgery for the perforation are the two biggest reasons I have gotten so, oh so bad with my fibro. It was after the MRSA that my health care provider fully disabled me out of work. I already had a lot of stress from various life events and two HIGHLY stressful jobs. When the car accident began its chain of events and then months later my surgery, I feel my body just cold not take it. So Saturday, after spending two hours at a kite festival, that was an example of what my life as been like since things have progressed to “REALLY BAD!”.  As I was weeping while Pauls just hugged and held me, I cursed this awful, horrible ‘condition’, I had to give thanks to God for such a wonderful and understanding husbands whose biggest frustration is that he cannot do anything to help (though he really does do a lot and just does not realize). I have the best husband in the world and could not bear this without him.

     I intend on doing *something*, I just don’t know what yet. Lets see… I have tried it all. I lost 170 lbs… thank God as I could not imagine having gotten to this level of fibro and not having lost the weight….. I have tried Physical Therapy (usually I end up hurting worse and even in situations where they can put me in a pool, etc, I cannot afford a 20% co pay three times a week). I have tried just about all the meds and cocktails of meds available. I have tried  a Chiropractor (helps a bit but insurance only covers 80% and you have to go three times a week). I have tried swimming (and if I want super flare, I will do a few laps in the pool… that will guarantee super flare!). I will stand on my head facing east while the wind blows 10 MPH as a camel farts in outer Mongolia if they think it might help! Okay, that may be a little extreme.  However, if it has worked for someone, I just may give it a go! The last couple of years has been, as I stated earlier, soul crushing. For those that say, “It could be worse.” Yes, I am aware and thank God everyday for the blessings He bestows on me. With all due respect, however, until you cannot sleep in bed, lying down for 7-8 hours because it hurts too bad to lay flat all night….. until you walk around like an 80 year old after sitting for a hour or two because your muscles are so locked up…. until your neck is so tensed up, you can see the muscle knotted up under the skin (looks like someone put a small red potato under the skin at the back of my neck….until you sit up 2 and 3 hours in the night because of pain…. well, you get the drift. This is a blog about fibro; not a social network. So, what I am doing is talking about what many others with fibro face. And many…. oh, oh so many understand the disappointments that come with going out to watch kites for a couple hours and being asleep for the afternoon! However, I would not change a thing except to have possibly had my Granddaughter there with me… Mmmm maybe next year we can arrange that, I just love that little girl oh so very much and enjoy spending time with her!  I enjoyed our time at the kite festival! In the end, I am glad we got out and did something! So yes! The kite festival…. that 2 hours of fun Paul and I had…. was “Flareworthy”.

Until next time, K.

The Nuts And Bolts Of Fibromyalgia

Fibromyalgia affects between 2-5% of the American population which means about 6 million Americans have fibromyalgia. It is, however, a worldwide condition, not exclusive to the USA. Though fibro commonly sets in between the ages of 35-60 and affects women more than any other group, men and children are certainly not immune to this unforgiving condition.

People usually assume fibro is a ‘new’ condition (meaning something that has shown up in the last 25-30 years), but nothing could be further from the truth. 1,200 years ago Hippocrates described the then unnamed condition. Reports of illnesses with strikingly similar symptoms can even be found as far back as around 1500 BC.  For hundreds of years it was simply referred to as muscular rheumatism. In 1892 Sir Walter Osler described it as neurasthenia. A few years later in 1904 the term fibrositis was first used.

Doctors used  the 1990 diagnostic guidelines (after ruling out other potential illnesses) to diagnose fibromyalgia for many years.

http://www.nfra.net/Diagnost.htm

     The biggest, as most fibro patients know, is pain in 11 of 18 tender point sites on digital palpation. Also fatigue, unresolved by rest, for longer than three to six months (usually if your fibro has Chronic Fatigue Syndrome as a companion such as in my case).  In May 2010 The American College of Rheumatology published new provisional criteria, not to replace the old ones but to address certain limitations in the 1990 criteria. The goal is to provide a more practical approach that allows doctors to better monitor symptoms and disease severity. This includes, but is not limited to:

  • Fatigue
  • Waking unrefreshed
  • Cognitive symptoms
  • Somatic (physical) symptoms in general (such as headache, weakness, bowel problems, nausea, dizziness, numbness/tingling, hair loss)

http://chronicfatigue.about.com/b/2010/05/22/new-diagnostic-criteria-for-fibromyalgia.htm

I am ecstatic to see them finally recognize the cognitive (brain fog) and bowel problems (IBS). In talking to many people over the years with fibro, one thing I have learned is nothing is sacred with this condition. While the above criteria is the most ‘common’ symptoms, I have heard so many different things, it would take me an hour (and the memory of an elephant, minus my *brain fog*!) to list everything. As I sit here typing this at 5:30 AM, my hands and feet are tingling. I hope to get another hour and a half of sleep. I may…. I may not. I won’t share my gut issues I have going on right now as that is way too much information! The pain levels have been high lately, but then they usually are when I push myself too hard. That right there is the key. Recognizing that we, with fibro, have limitations. I have it bad, so my limitations are very tight. When I try to do too much, it always turns out bad.  So my advice: listen to your body. If it is saying, “Slow down”… do so!

Next posting will be on once you are diagnosed what treatment options are available, and I will give my opinion…. and please remember that, it is just my opinion, please, please do what you healthcare professionals advice you to. Until next time, K.

My Life With Fibromyalgia And Chronic Fatigue Syndrome

Hello. My name is Kelli and I have suffered with Fibromyalgia and Chronic Fatigue Syndrome for nearly twenty years. I was officially diagnosed at Scripps Hospital in La Jolla, CA (outside of San Diego) in 1996, but had symptoms since 1993. After the birth of my fourth and youngest child, I started noticing my hips were tender. I realize that is a strange symptom. While a bit bothersome, I did not seek medical attention for this. It was not until 1995 that I sought attention for severe neck and upper back pain that my story really begins.

First, I want to make something very clear. Most patients with fibro can pinpoint a big/catastrophic event/illness that usually was the start of their condition. I, in no way, shape or form blame my 6th pregnancy (4th live birth with 2 angel babies lost to miscarriages) on my fibro. I do, however, blame the *chicken pox* I got 18 weeks into the pregnancy followed by the *shingles* I got four weeks later on being my ‘trigger event’ that started my journey with fibromyalgia/CFS. With or without pregnancy, I firmly believe this illness would have triggered the fibromyalgia. I was more worried about the effects these illnesses would have on my unborn daughter than I was about the effects they would have on me. Today, at eighteen years old, after finishing fourth in her High School graduating class and now double-majoring in college; registered nurse and music…. nothing ‘difficult’ 😉 I think it is fair to say the illnesses did not have an affect on her. She was born eight days early, 9 lbs 4 oz and has been amazing since her first breath!

I was told at the time….. this illness they called fibrositis….. hit mostly women and caused a lot of pain. They did not know much about fibro then and a lot of Doctors did not even recognize it as a true condition. Thank God for those of us with this debilitating condition, much has changed. However, we still have a very long road ahead. So much needs to be done as many still sweep this ‘under the rug’.

 FIBROMYALGIA MEANS MOST, IF NOT EVERYDAY IS FILLED WITH PAIN

I was put on a ‘cocktail’ of ibuprofen, a muscle relaxant and a very low dose Rx pain reliever. My pain was managed fairly well for several years with these medications and they did not make me ‘loopy’. It would be numerous years before I had my RNY (Gastric Bypass) and even more years before my exasperation.

In 1996 my first husband was offered a job in Virginia and we decided since the work he was doing in California (Union Welder) was ‘iffy’ at the best of times, a job with a company as a full time, permanent worker might be a good idea. The chance to live some place besides the city we had both grown up in was appealing and exciting. There are days I still regret that decision, however, I feel that there must have been a reason for us to come here. I procured a new Doctor quickly here and ironically, he had fibromyalgia! He did not have an issue with keeping my medications the same, thank goodness. However, in 1999, we had to move to South Carolina but only lived there one year. They closed the shop in VA, sent us to SC then decided it was a bad idea to close the shop in VA and reopened us. It was a tough few years moving back and forth. I also was hit head on in SC when a man went over the double lines. I mention this because I feel like this was one of the events that led to the worsening of my condition over the last few years. Not knowing airbags emitted a smokey, gun-powder like substance upon impact, I panicked and tried to get out of the vehicle. I ended up being drug on the ground for about 50 feet and finally get go. My legs and feet were not in good shape, but God was so good and I was ‘OK’. When getting back to VA a few months later, I found out my Doctor here had retired as his wife had recently passed away. 🙁  So I got another one. It was the same thing; the medications worked; if it ‘ain’t broke, don’t fix it”.

FIBROMYALGIA USUALLY CAUSES CHRONIC FATIGUE

 

So life went on for years. If I pushed myself too hard, I had ‘flares’. If I took my medications and did not do things I really should not and tried to walk four to five times a week for about half an hour, things seemed ‘sorta/kinda okay’. Then all hell broke loose.

With the demise of my first marriage and the stress that came along, things really took a turn for the worse. I re-married and am happily, to this day (about ready to celebrate my 7th wedding anniversary!), however things have been tough, financially, because I finally had to file for disability.

My next post will be more of the “What fibro is, etc.”. However, most agree ‘something’ sets it off. My ‘something’ was the Varicella Zoster Virus at age 29……. and pregnant! There was an actual ‘chain of events’ that I believe led to what I call my ‘exasperation’ aka me becoming disabled from the fibro/CFS. I think within that, I may have possible adrenal issues as my anxiety is off the charts. However, for now, this is an introduction to me, and my fibro/CFS life.

Until next time, K.