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
- 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
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.