Most people think Fibromyalgia/ Chronic Fatigue Syndrome is just pain and just severe tiredness. That is so far from the truth as fibro / CFS is so much more than pain and fatigue. These two symptoms are but a very small part of these conditions. So just what is this….. this relentless force which runs the lives of people with Fibromyalgia and Chronic Fatigue Syndrome?
- PAIN:Obviously pain is the number one symptom of fibromyalgia. Pain can be in certain areas, or is (usually) widespread. Nonetheless, where there is fibro, there is pain. It is not the only symptom of fibromyalgia. It is just the beginning.
- IRRITABLE BOWEL SYNDROME: IBS has to be the most frustrating of the side effects of fibro. To put it in a delicate way, many of us have to ‘manually steer’ our guts. We load up on Imodium when things are going too well and get the softeners going when things get backed up. For me, these days, rarely do things go smoothly on ‘their own’. Now I am not trying to be gross or give TMI, however, this is the reality of things and if I am going to be open and honest, I feel I would be doing a great disservice to leave this out.
- CHRONIC SORE THROAT / HOARSENESS: While my throat is not sore all the time, nothing screams “flare” like a scratchy throat! I do get these often….. especially when I am run down. To add to that, I seem to have an eternal hoarse voice and from a girl that not only has never smoked a day in her life but also has a severe nicotine allergy, I cannot be accused of ‘lighting up’. I don’t and couldn’t even if I wanted to partake in that deadly habit. No, it is the fibro and it is why I had to stop singing. You will find me saying ‘Fibro took ‘this’, ‘this’ and ‘this’ from me’…. one of them being my singing. Singing…. whether it being in choir in church or community theater was a passion. My passions have shifted because they had to, in part!
- PARESTHESIA: a sensation of tickling, tingling, burning, pricking, or numbness of a person’s skin……also known as the feeling of “pins and needles” or of a limb “falling asleep” is another oh so ‘fun’ effect of fibro. My hands are in constant 24/7 ‘pins and needles’ which is also aggravated by the (tangible) severe stenosis in my neck. The two sort of collide like a great, sticky mess of a train wreck.
- PAINFUL / SWOLLEN LYMPH NODES: Again, this screams, FLARE! If my lymph nodes are doing anything funky, I know I am pushing too hard and am going into flare mode or getting sick. My lymph nodes and throat (getting sore) are my best indicators of when I am heading for a flare.
- THYROID ISSUES: (Theory Alert!…. remember, I am collecting theories for a later post). About the thyroid. I do not know why, but most every single person I know that has fibro also has issues with their thyroid. Now this may be a chicken/egg scenario, I do not know. Nonetheless, I do know that the thyroid seems to be a common denominator in fibro issues.
- SLEEP DISORDER: I am typing this at 5 20 AM and have been up since 3 AM. Last night my husband came in from his 2nd job and found me sitting up on the couch with my uneaten dinner on my lap, sound asleep. A few nights ago, I fell asleep on the couch at 8 PM and had (broken) sleep until 8 AM the next morning, and some nights I get 2 hours sleep. Some nights I get no sleep. I nap most days….. sometimes I nap an hour, other times I have napped up to 4 hours. There is nothing normal or regular about the way or places I sleep. When I do sleep in bed from a somewhat normal time, I sleep just like a baby….. up every two hours. As I stated in my “Day In A Life” post, it is very difficult to pin point a beginning to my day as it sort of just loops round and round like Pink Floyd’s, “The Wall” CD. And then, to top it off, there is the recurring nightmare. To say my sleep issues mirror every other fibro patients would be totally wrong. All the same, the one thing most of us share is we do have challenges related to getting normal and uninterrupted sleep.
- CHRONIC HEADACHES: This is by far one of the most common and shared complaints of fibro sufferers. Headaches in general are a common symptom in the society we live in and have different causes from hormones, stress, foods, sinus issues, etc. The thing about headaches with fibro is that the person is already in a substantial amount of discomfort. In many cases the fibro patient gets migraines and most everyone knows a migraine will take you ‘down’ in no time flat. Topomax is a good migraine prevention medication and Maxalt or Imitrex are good migraine meds once the headache starts. Maxalt works best for me and contrary to what some choose to believe, these meds are not pain meds, but rather go directly to the constricted blood vessels and cause them to open up.
- DEPRESSION / ANXIETY: If you hurt all the time, wouldn’t you be down? If you were judged, ridiculed and told your illness was non-existent at times, wouldn’t you feel pretty sad? If your life was run by a force so deep…. so powerful….. so unknown yet so volatile, wouldn’t you be anxious? Now add the chemicals in your brain being a bit off kilter because the chemical called serotonin was not quite being in sequence. Most people with fibromyalgia suffer from clinical depression. That is one reason Savella (an anti-depressant) has been approved by the FDA as one of the first drugs besides Lyrica to be used as a treatment for the treatment of fibromyalgia.
- NAUSEA: This is one of my least favorite side effects of fibro. Being post RNY also, I have ‘double whammy’ when it comes to my stomach and therefore always have anti-nausea medication nearby. I am not good when it comes to nausea and you can count me out in most things if I get an upset tummy so this is one area I have to be very careful about. For those of us with fibro, it is like dancing on hot coals….. especially those of us that have IBS
- HEAT / COLD INTOLERANCE / PHOTOSENSITIVITY / SENSITIVITY/ TINNITUS/ CHILLS: And so much more can be grouped into ‘Sensory Overload’ ….. which I of course did an entire Blog Post on a few posts ago. Sensory Overload is just that…. everything from taste, smell, touch, sight, feel…. everything is amplified, enhanced and heightened to uncomfortable levels. Cinnamon is nice, but not if it gives you a headache. Sugar tastes good until it makes you sick. Fur feels good unless there are burrs in it that stick you. Daylight is glorious unless the light is so bright it gives you a headache or makes you just feel ill. You will always find me wearing sunglasses…. even on the cloudiest of days. Nothing is good in extreme and with progressive fibro, sensory overload is paramount and it is one of the most frustrating of symptoms. You have super-human senses with the energy of a cell phone with 1/2 a bar of coverage.
There are many more side effects I could cover…. tachycardia, restless leg syndrome (I do not have that, but many do), shortness of breath (made worse by asthma in my case), vision problems, disequilibrium (I am the clumsiest person you will ever meet!), swelling (Lacex is my friend!), acid reflux, weight gain (too depressing to even talk about) 🙁 , light-headedness, hypoglycemia, difficulty swallowing (which can be quite alarming!!!!!), and anything / everything else you could imagine. Fibromyalgia is a cruel, evil, ugly …. pardon my language here, but there just is no other word….. bitch. She has no mercy and the saddest part of all? The stigma we carry by others. I have mentioned before how I was so harshly pre-judged a few years ago because my stomach….. getting ready for a trip abroad. Not too long after that, I had an intestinal perforation. I almost died! Because of my very limited ability to eat and severe sensory overload, I was ….. well, scared! I was going into the unknown, across the ocean. Someone decided…. based on that….. never taking the severity of my illness (even in the future knowing about my serious surgery, etc) into consideration. I never asked for special favors and anything anyone did for me was their decision and their decision alone and they were told with very sincere appreciation how grateful we were that they went to any trouble…. though not necessary. The point is, this is a perfect example of how one person used and still, to this day, uses fibro to judge me. Other ways? Being left out and not included because people do not think I can ‘do this’ or ‘do that’. As I have posted, I will be extremely honest. If I am not up to doing something, I will be the first person to say so! These ‘side effects’ are just as soul-crushing as anything physical. Remember, we with fibro / CFS…. we want our life to be as normal as possible. I enjoy ‘doing’ for others. Or trying to anyway…. sometimes that can backfire one me when I try…. but my heart is always in the right place. 🙁 So call that loved one in your life today who is suffering and invite them for lunch , tea, shopping, etc! Give a hug to the person in your life with chronic pain! We want to live, love and give too………. just as much as everyone else! And remember, Fibromyalgia Awareness Day is coming up on May 12, 2013! Do something….. anything…. no matter how small; a text, a card, a call, even a short e mail to the fibro friend in your life on May 12th just to let them know you care! 🙂 Until next time, K.