Today I had two appointments that I pretty much blew off as exams that my primary care doctor needed to check off but turns out they might just be the best answers I get out of this trip.
I can never remember what I told you verses my other girlfriends or my mom so excuse me if I’m repeating myself, but this past year I’ve had a few symptoms that have really made life tough. They didn’t come & go like the usual joint pain, fatigue or fever flares. One, which is by far the most intrusive in my life, has been my lower back pain that shoots into my hips & down my left leg. My pain management doctor ordered an MRI months ago but nothing on it showed why I was having this pain. There was a small herniation & a few degenerative discs & since those were the only findings my doctors recommended treating those with their usual back protocol in hopes that it would somehow solve the pain. (Normally this type of pain is nerve related but the MRI showed nothing pressing on the sciatic nerve) First was an epidural injection with the devil in a bottle, Prednisone. When that gave no relief they moved me on to radio frequency where they actually burn the nerve on the suspected trouble making joint, and in between those treatments were a few months of trying a bazillion different pain medications that gave me side effects which ranged from twitching to pooch belly constipation.
After today I finally know the reason none of those treatments worked. The problem was never my discs or aggravation of my sciatic nerve. My problem was my crotch.
Hehe, do I have your attention now?
Let me back up…a few of my symptoms that I mentioned to the Mayo primary doctor were that sometimes I get horrendous pelvic pain, it’s comes on quick & goes away just as randomly. Also this past year peeing is, well, harder than it should be. I had an entire urologist workup in the past which showed nothing & yet the problem remained. I’m guessing this was why she wanted me to see the Mayo gynecologist, and guess what that lovely woman found within 2 minutes of examining me? I have Pelvic Floor Dysfunction.
Your pelvic floor is kind of like your house’s foundation. It’s a bunch of muscles that run from your front to your back & they hold everything in place. Turns out mine are in constant spasm. When those muscles are spasming they cant’ relax enough to start a stream of urine, at least not without a heck of a lot of effort, also when they’re all freaking out it causes constipation, pain during sex & a host of other problems. The gynecologist started telling me about causes of PFD…a really bad bladder infection or trauma are usually the culprit. Neither of which related to me, I asked her if any diseases are associated with it, without missing a beat she answered, “Fibromyalgia.”
“Oh, well I have that.”
At this point it’s only halfway through the day & I’m already feeling pretty darn overwhelmed. Overwhelmed with relief that if PFD is the source of my pain than a solution could be just around the corner & also pretty defeated that once again Fibromyalgia is sneakily wreaking havoc. You know, I’m also kind of pissed that no one picked up on it sooner but whatever, gotta let that one go.
Next up on the grind was an appointment with a ‘doctor of physical motion’, I’m still not entirely sure what his specialty includes but my impression is he recognizes when pain is a result of your body not moving the way it’s designed to. Dr. Rizzo was a very nice but very to the point man. He pulled up my MRI (the one my local doctor had done) & was able to show me yet another reason my back hurt. For those of you who are medical professionals please excuse my poor regurgitation of all your jargon. On the outside of your spine there are some small, finger looking muscles that go up & down your back. Not your big back muscles, these guys kind of nestle underneath. My MRI shows that at the top of my back these muscles are nice & plump, when you get a little lower however they start to look a little rough. I believe the term is ‘muscle atrophy’. When those wimpy little muscles aren’t pulling their weight everything starts get out of whack, on the other side of those muscles are tiny little nerves that run impulses up & down your back…mine are pissed. He explained how my wimpy muscles & my crooked pelvic floor muscles are related in throwing everything off kilter, even as I’m trying to explain it to you I’m really not exactly sure how it all works but I do know this, it can be fixed with physical therapy. About 4 months is his guess before I should expect to see results.
When my Dad & I asked what causes muscles to atrophy in a young, relatively active person he gave a few different diseases. Guess what one was? Fibromyalgia.
Between these two visits just stick a fork in me…I’m done.
I really thought that Rheumotolgy would be where I’d get my big answers but after today I’m wondering, could all of my problems really be from the Fibro? I can’t really explain why but I hope not. Fibromyalia is such a vague, confusing syndrome…my rheumotologist always said she thought it was secondary to some bigger problem I had but at that point it was the only thing identifiable. For the last year I’ve been waiting to know what that ‘big thing’ was & that it wasn’t just the boogey man.
Two more days to go, Rheumotology & Autonomic Testing, if they don’t show some unturned stone than I think this whole trip will be learning that a problem I already knew I had, had gotten out of control.
My ability for finding unnecessary purchases in random places has truly outdone itself, hospital gift shop matching sequined dorothy slippers for the girls & myself? Yes, please.
Glad you’re beginning to get some answers, and I hope you begin to feel better. It can be difficult to continually get news of what’s “wrong” with you (my mom is experiencing that), but staying positive is a huge factor when it comes to getting better!
I’m glad you’re finally getting some answers. I got those slippers in gold for Christmas. I love them. They’re so sparkly.
How random. I was Just reading about pfd today. Hope you find some answers!
I just read this the other day and found it interesting… Just in case it provides any insight: http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/
Yay for answers! I’m seriously doubting but have you ever heard of Complex Regional Pain Syndrome, or CRPS. Doubtful that’s it but my friend was finally diagnosed w it after multiple back surgeries etc due to pains that just wouldn’t quit. Anyway I’d just hate for you to leave any stone unturned.
So sorry to hear about your suffering Natasha but happy you’re getting answers. Usually that’s the first step to healing – You freaked me out when you said PFD since I was diagnosed with PID (Pelvic Inflammatory Disease) after experiencing constant cramping pains – they don’t know what caused it but it flared out of control and now my left tube is out of whack. Lady parts are no joke.. I also had back pain and had chiropractic therapy for a few months which helped but I guess not enough. Yay to being young and all f’ed up!!!! Hope the remainder of your appointments go well Natasha! -Iva
I completely relate with what you are going through. I’ve been trying to figure out what’s wrong with me for 12 years now and still have a very weak diagnosis for my symptoms (inflammatory arthritis) but during the search they diagnosed me with MS. It’s so frustrating and painful. My dad’s been nagging me to go to Mayo for years now but my rheumatologist told me that they would only be able to tell me what she had diagnosed already. (((HUGS))), I understand what you’re going through and it sucks.
By the way, I’m exactly the same, sparkly slippers would have drawn me in for sure and my girls would have also gotten a pair. Shopping for pretties does indeed help keep your mind off of the bad stuff! 🙂 Hang in there and take care.
Huh. Well, sounds like progress to me. Progress and sparkles. Things are going well.
Natasha, I pray that you are finally given some solid answers and a plan that has actions you can take to feel better and get better! I ran across an article someone posted on FB, that unfortunately I can’t find, but have found many like it since about Chronic Lyme Disease. I remembered reading that you’d been diagnosed with lyme disease previously, but I can’t remember if it was a misdiagnosis or not. When reading the original blog post about CLD, it echoed so familiarly with the illnesses I’ve read you’re going through. It is called the Great Imitator. It can mimic well over 350 other different diseases and conditions. (http://whenlifehandsyoulyme.blogspot.com/2013/05/complete-list-of-pre-lyme-diagnoses.html) I don’t know if this has been explored by your medical staff, but I thought it might be worth a shot to tell you about it. Sending you prayers for comfort!
I hope they are able to provide you with some relief for ALL of your symptoms. I too was diagnosed with Fibromyalgia, but the medication’s side effects were worse than my symptoms. I still suffer with symptoms but I’m thinking of getting a second opinion. Fibromyalgia is so ambiguous, but more than that, a bitch.
Praying you find answers, but most importantly, that your health improves.
I had/have PFD and I have to say…a woman’s care PT was an angel in my life. I ended up seeing her for almost 6 months, twice a week, but I kid you not. I never realized how much weakness I had until I met her and how much tightness I was carrying in my hips. And my GYN didn’t even take me seriously but referred me b/c I bugged her and had a PT friend that thought my symptoms matched it. Hope you’re able to find a great PT, the experience I had was amazing. Yes, it sucks being 28 and going to an office which is usually filled with older ladies, but ya know what? At least we are taking care of ourselves and treating issues head on. It’s a little awkward at first having someone “working” on your bits, but when u feel the progress and relaxation of muscles you didn’t even realize where in tension? It’s the best.
Hi Natasha. Have you ever read this book…Healing Back Pain by Dr. John Sarno?
http://www.amazon.com/Healing-Back-Pain-Mind-Body-Connection/dp/0446557684/ref=sr_1_1?ie=UTF8&qid=1389837967&sr=8-1&keywords=dr+sarno+books
I know you don’t have back pain but it addresses the mind-body connection in relation to all sorts of health issues, even fibromyalgia. It’s available on Amazon and it’s been a game-changer for me. Apparently our unconscious mind is “doing us a favor” by diverting pain into our bodies so we don’t have to deal with repressed emotions like anger. I think you would get a lot out of this book. He’s a real doctor with a large practice in NY. He cured thousands of patients, even Howard Stern! Here’s the link to the interview with Howard. Good luck. I know it can help you.
http://www.youtube.com/watch?v=iYIOOURMuS0
Oh dear, how I hate fibromyalgia. I thought, when it decided I would be an excellent host, that I was dying, that I had MS, something that was surely going to kill me after almost crippling me with pain. Ten years later, I’m on a regimen of Cymbalta (90mg), Lyrica (150mg), Tramadol, and Flexeril, with a splash of migraine med and a bunch of fiber pills. It keeps the pain at bay unless I do something stupid and stub/break a toe. Then the flare begins, and when it will stop, nobody knows. When that happens, I soak in a hot tub with 2 cups of Epsom salts with a goblet of wine. Oh, and regular chiropractor visits, but not while you’re in the tub! ;-p You just have to find a good one.
Hang in there, honey. You’re in a good place. You should take a short trip down to St. Augustine Beach and eat at Barnacle Bills. Good food (with a nice glass of chilled bubbly Moscato) at least doesn’t hurt.
Natasha , I work at a chronic Lyme disease clinic and I have been for four year . My boss the owner of the practice is one of the top Lyme disease doctors in the country . Your symptoms are typical of chronic Lyme disease patients . Most patients diagnosed with fibromyalgia actually have Lyme . Our clinic is in Reston . I am praying for you and rooting for you . If you are interested in more information please email me .
I am sorry to hear about your health troubles. Prayers that you will find answers, comfort, and relief soon. I am, however, THRILLED that you posted your slippers with the TAGS on them! I had seen the AMAZING sparkle slippers on instagram, but never could figure out who made them!!!! I now am the proud owner of some red sparkle snoozies! Thanks!!
Ha! Oh thats hysterical, next time just ask me, I’d be happy to share the ruby red slipper love!