I am new to the board and newly diagnosed with fibromyalgia (though suffering for some time now)! Just a brief history about myself: I am a 34 y/o married mother of 2 girls. I am a licensed clinical therapist, so I sit most of the day at work (Which hurts most of the time). In my life I have had several traumatic injuries. I fell out a 2 story apartment building when I was 18 months old and fractured my skull, and when I was 3 y/o I was hit by a truck and broke my pelvic bone and both femurs. They said I could possibly never walk again, nor have children, but I proved them wrong! All my life I had horrible pains in my legs that my doctors said were "growing pains" or were a result from my injuries. But they never have stopped!
Flash forward to today. I have Degenerative Disc Disease and had a spinal fusion last year on my L4-L5 vertabrae, I have hyprothroid disorder, I am anemic and the doctor struggles to get my iron levels regulated, I get B-12 injections monthly, I have IBS, I keep horrible tension headaches, my bones and muscles hurt and ache so bad that sometime heat is the only thing that helps any, and I am ALWAYS tired. ALWAYS!!! I used to be athletic, but I fought through these symptoms, but now I struggle just to function daily. Right now my pain care doctor has me on pain meds and muscle relaxers, (Hydrocodone and Flexeril) but my neck and shoulders are still stiff! What does everyone else take? Also, my body aches so bad when it is cold (like in the a/c in this office right now! ), but when I go outside in the heat, my headache returns in full force. Why is that?! I am still so new to this and I am sorry for being long winded. You guys have been so helpful already just reading your posts. Thanks!
Hi everyone! Right now my pain care doctor has me on pain meds and muscle relaxers, (Hydrocodone and Flexeril) but my neck and shoulders are still stiff! What does everyone else take? Also, my body aches so bad when it is cold (like in the a/c in this office right now! ), but when I go outside in the heat, my headache returns in full force. Why is that?!
Hello, sorry you have this frustrating illness, but you will find much information on this Board that will help you to better understand and cope with it. In response to your questions:
Medications: Since there isn't a medication specifically for FM, most meds are prescribed off label; meaning they were designed and FDA approved for one thing and yet discovered to also work for other things....the other things are the off label part. While several meds are currently in FM clinical trials for FDA labelling approval, none of them that I know of are truly NEW meds designed for FM. Drug companies are just trying to jump on the FM market and get their patented expensive drugs specifically FDA label approved for FM. That will increase their market share since some doctors simply won't prescribe any off label drugs. What this means is not much is changing...just technical re-labeling. As to what drugs work, it varies based on chemistry of course. On days where you canm try and cope with pain with OTC pain meds and boost effectiveness by adding 1/4-1/2 RX level dose. Keeping RX pain meds to a minimum is critical in order to avoid tolerance dependency which leads to a far worse problem. Reserve full RX dose levels for bad days and flare periods. Otherwise you will develop tolerance and lose effectiveness where you have nothing to help you through the worst days.
COLD MAKES IT WORSE: One of the symptoms of FM (usually) is difficulty regulating body temperatures....our internal circuit malfunctions....many have constant cold extremities with hands/feet. Cold weather and airconditioning make things worse as it causes our muscles to contract and spasm. I always travel with a light pullover or light jacket in the trunk of my car for going into restraurants or stores where the AC is always unbearable for me. Some of us are like a weather dopplar service and predict upcoming weather changes and then experience flares when the weather actually changes too rapidly.....we have fragile little internal eco systems it seems.
SUNLIGHT MAKES IT WORSE: Unfortunately, yet another symptom for many of us. While cold adversely affects our muscles, sun adversely affects our eyes....thus that is where your headaches are likely coming from. Some of us have high multiple chemical sensitivities and will get headaches just from smells or tastes.........again, fragile internal eco system. Right now I am experiencing a period where I simply can not go outside without DARK Jack Nicholson type sunglasses....and on sunny days have to keep my windows closed in the house.......just can't take the bright light.
And, you will experience fluctuations with your symptoms and responses to things, including medications. Those fluctuations can start to make you feel, and others to wonder, if you are a hypochondriac........ugh.
Just research and read, read, read.............educate yourself so you are best able to manage your own health. Know that there are MANY differing opinons on cause/effect/treatment.....so, don't closed-mindedly lock down and rule out opinions......if what you are being told does not seem consistent or congruent with your symptoms, your needs, your situation.......keep seeking until you find what seems right to you and works for you. This Board is a wonderful resource for that......giving and sharing information. In our situation where so little is really known and with so many differing experts....this is the one place where we can get grounded and know we are not alone in the struggle.
I have hyprothroid disorder, I am anemic and the doctor struggles to get my iron levels regulated, I get B-12 injections monthly, I have IBS,
Have you had thorough testing to rule out Celiac Disease? That symptom triad of anemia, hypothyroid, & low B12 is not uncommon in celiac. And CD is often misdiagnosed as IBS. For a thorough workup, you need a panel of 4 blood tests, with endoscopy followup if any of those are abnormal.
You may also want to do some reading on thyroid disorders, as in many cases docs rely on a screening test (TSH) only, resulting in undertreatment, particularly in cases where folks have fibro. For us, treating to optimize levels of the free thyroid hormones, free T3 & free T4 is most beneficial. AND it can have a significant impact on reducing pain levels.
First of all, sorry for the typo in the heading! Blame it on Fibro Brain fog!
Thank you so much everyone for your advice. I will definitely check with my primary care doctor about Celiac Disease. I have so much to learn and it seems like this board is a fantastic place to start!