REPOST: FOR INVISIBLE ILLNESS WEEK:Thyroid Disease And Fibromyalgia With A Touch Of Menopause

Don't give up

Image by quinn.anya via Flickr

I am NOT a Doctor. I may see a lot of Doctors but in no way am I one. I don’t pretend to be one. However, I am a patient, a chronic pain patient and I believe I know a whole lot more, personally, about these subjects than some Doctors do. Sorry, but it is true. This is only what I THINK, only what I FEEL and only what I have EXPERIENCED. For those who have read earlier posts about my dealings with Fibromyalgia, Hashimoto’s Thyroiditis and Menopause, this is different; I’ve never once put my own theories down on (computer) paper. Also, for the young woman who responded to a post saying she will check out Fibromyalgia even though her Doctor said “He didn’t believe in it”  YOU GO GIRL!

I hope this will take the five or more years of suffering that I had to go through and help someone; HELPING just one person would make me extremely happy. I mean that from my heart. I think there is a correlation with the above- mentioned diseases/changes, at least for me there was, especially with Thyroid Disease and Fibromyalgia.

I went through Menopause about five years ago, it wasn’t too bad, I had the usual symptoms but it wasn’t anything I couldn’t bare. I think that Menopause was the catalyst to all these (bad) changes in my body. After being in menopause, I went to my annual physical where my Internist did the usual blood work. When the results came back, for the first time in my life, I had an underactive thyroid. (Thyroid disease DOES run in my family, both my mother and sister have it.) I was put on Synthroid (my opinion ONLY: I use brand name, NOT the generic.)  My symptoms were chronic pain, muscle pain, severe aches and pain, and extreme fatigue.  My own quote: ” I felt like I had the flu without the fever.” That is what I felt like day in and day out. I thought the Synthroid  (for my underactive thyroid) would help but it never did. For months I was in bed feeling worse and worse, my said Internist said “there is nothing further I can do for you” and walked out of the room leaving me inside, on the examining table, sobbing. True story.

She finally referred me to a Rheumatologist who looked at me and said I had “Scoliosis” and that with my thyroid disease (an auto-immune disease: Hashimoto’s Thyroiditis) I should be prepared to get OTHER auto-immune diseases. Gee, thanks. There was no mention of Fibromyalgia and since when did I have Scoliosis? Whatever.

I felt horrible, chronic pain, muscle pain, joint pain, I could barely get out of bed. I won’t even mention the doctor ( he gets lower case on purpose!) that I went to who treated me with very DANGEROUS drugs, I will spare you that. I have Fibromyalgia and I really do think, there may be a connection between Thyroid disease and Fibromyalgia. AGAIN, I am not a doctor. However, I recently read about a new study where they are trying to see if T3 levels are linked to Fibromyalgia. (Promising!?)

Please, if you are experiencing all the symptoms I mentioned, don’t let an ignorant doctor make you feel like a fool. You know YOUR body best. Keep fighting, keep researching and, go to a good Rheumatologist, this is the Doctor that you need for Fibromyalgia. I have a friend who has a Thyroid condition like me (Hashimoto’s Thyroiditis) and a severe case of Fibromyalgia and she only goes to an Endocrinologist. Big Mistake but she will not listen to me. Don’t be like her. I just want to help. If you do see a Doctor that scoffs at Fibromyalgia and doesn’t believe in it: leave, do not stay. Check out your Doctor on-line, I chose mine from a list that said he believed in Fibromyalgia, treated it and patients loved him. I am one of his biggest fans. You deserve this too. Good luck.

These Days

January stinks...

Image by Jinx! via Flickr

I have been feeling extremely discouraged and blue; I’m back to square one, for the sixth time, in my search for a successful treatment for both my Fibromyalgia and auto-immune disease, Hashimoto’s Thyroiditis.  It’s been over 4 years since my initial diagnoses and I have been given drug, after drug, after drug.  I start a new medicine, each time, with hope and innocence and excitement like a flirtation with a possible new love. Two months go by and then I find out that it was, again, just a fantasy. Side effects are my enemy, I generally am the person that fits in the “possible and infrequent side effects.” Another dream deflected, another dream deferred. Back to the drawing board, again; I eliminate the medicine and so too my hope.

I’m drowning my sorrow in leftover Halloween candy and cookies:  Almond Joy bars, Kit Kat bars, Nestle Crunch, Heath bars, Reese’s peanut butter cups, Twix bars, Keebler chips deluxe  cookies and pretty rainbow cookies filled with marzipan and jam. For my anxiety attacks that wake me up at 3:00 am and keep me up until 6:00 I occasionally take Xanax, one prescription drug that I trust.

Yesterday, I started Savella for my Fibromyalgia and decided to stop using Arava (an immuno-suppressant drug). True,  Arava kept my energy up but my legs ached continuously,  like someone was squeezing them into a vice and wouldn’t let go. I don’t want to be on as many drugs anymore. I want to simplify my life, my body. It’s always a long stretch between taking the new medication ( 6-8 weeks) to kick in and likewise for the drug to leave my body.  My husband kept mentioning how the Arava gave me energy and he was right but at what cost?  It was only the other day that it occurred to me that I don’t have to live with the side effect of leg pain if I don’t want to. I’ve been on this drug for months and the thought just occurred to me. I have a choice but with that comes the acknowledgment of failure.  Am I so used to pain that I feel it’s acceptable, even normal, to have some?

I’m alone in my search because no one really knows how I feel except me and even I get confused, my symptoms blur together. It’s hard for me to describe pain that is not throbbing, jabbing; how does one explain “constant?” I go by hunches and I try to listen to my inner self. My body is telling me now to get rid of the different chemicals and if I have to, start again, reevaluate in the future. For now, I will try to nurse my defeat with sleep, and when awake, look bravely at the sun in the sky while it lasts. I dread winter; I always dread winter. My bones feel frosty and taut, my body aches with pain and my mood becomes as dark as the early sunset.

*These Days by Jackson Browne

Well I’ve been out walking
I don’t do that much talking these days, these days
These days I seem to think a lot
About the things that I forgot to do
And all the times I had the chance to

And I had a lover
It’s so hard to risk another of these days, these days
Now if I seem to be afraid
To live the life that I have made in song
Well it’s just that I’ve been losing for so long

Well I’ll keep on moving, moving on
Things are bound to be improving these days, one of these days
These days I sit on corner stones
And count the time in quarter tones to ten, my friend
Don’t confront me with my failures, I had not forgotten them

Who Am I?

Who am I?

Image by stevec77 via Flickr

Am I more than the sum of my symptoms or less?  It started with menopause, the entire disintegration of my body. All of a sudden my thyroid became underactive and I thought I had achieved a state of false bliss. Just add Synthroid and  I will be able to eat AND lose weight at the same time” Well, as it turned out, not exactly. The image of every foodie fat girl eating AND shedding pounds like my hairy mutt sheds her fur was not accurate, I was disappointed. I was  in pain all the time, my favorite phrase: “I feel like I have the flu but without the fever.”  I ended up not just having an underactive thyroid but I had Hashimoto’s Thyroiditis, an auto immune disease of the thyroid, basically my own cells were attacking me. My internist nodded her head and said “there’s really nothing more I can do” and as I lay there sobbing, undressed in the exam room, she clicked on her brown high-heeled shoes turned swiftly and marched out of the room.

One doctor led to another and another all with differing points of view. The second Rheumatologist  diagnosed me with Fibromyalgia but still, my aches and pains continued.

The third hot-shot doctor specialized in RA and Auto-Immune Diseases. “Fibromyalgia” he said, “that’s nothing but a lazy diagnosis.” We treat the auto-immune disease, straight and simple. Of course, not that simple. He started me on Methotrexate which helped but landed me in the hospital for my second bout of Eppiglottitis and possible lung damage. I develped a 24/7 cough, asthma and breathing difficulties, the pain from the Epiglottitis was excruciating. Several prescriptions and an inhaler later I came home.

They stopped the Methotrexate and he put me on Cellcept which worked well, with the exception of intense intestinal distress that forced me to stay in the house (and close to the bathroom for 8 entire weeks). I complained after four weeks and hot-shot ignored me and said “stay on it another four weeks” and like a fool I listened.

If I was rich I would go to the Mayo Clinic but having had no income in a year, that rules that out. One day at a time? How about one moment at a time? Today I stayed in bed, napping and trying to calm my internal self. Part of me wants to kick and scream and fight, the other part is too tired and weak to even imagine it. Along with the aforementioned symptoms I also have narrow-angled glaucoma which is very serious, interstitial cystitis, TMJ and a connective tissue disorder as well as a balance issue. Who have I become? When did all all these symptoms become me?

My latest blood tests come back next week and with it, I hope, will be some helpful information. I am tired of being tired, sick of being sick. I feel horrible when I fall and my two sweet children and darling husband come racing up the stairs to see what happened….again.

Help me, fix me, try me, define me.

Paging *All Doctors: Check Your EGO At The Door

Dear Doctors,

Before you enter a patient’s  exam room, where they have probably been waiting at least twenty minutes, stop, pause, and check your ego at the door. This should be standard procedure; but unfortunately it isn’t. There should be a confirmation box needing  a signature for “Check Ego?, next to the automatic Purell dispenser, to assure quality control.  *While the title is catchy I do know I cannot accuse all doctors of doing this but the ones I DO know (and you know who you are) are definitely in need of lessons in humility, humanity and sensitivity training. The bad part about it? Certain doctors just do not care. Full disclosure.

Two days ago I had an experience with my pompous, grandiose, full of himself, doctor who shall remain nameless.   Many of you have heard about this person before. He is an excellent doctor, scratch that, he is an excellent DIAGNOSTICIAN.  He charges exorbitant prices and he does NOT take insurance (insurance, what is that? what is it for?  Me take insurance? Ha Ha! ) but he is very smart, I’ll give him that. Is that really enough? Do we have to pick expertise in lieu of great beside manner, can’t there be a combination? That said, he is so out of touch with the “real world” that it is insulting, aggravating and utterly demeaning. Unfortunately for me the deck is stacked; I need him, he does not need me; and he knows it.

I had been to a local doctor (one who takes  insurance) and the doctor I saw asked me to have Ego- Dr.  fax her some information.  A reasonable request, I thought.  I thought wrong. When I e-mailed him, he flipped out and as an old friend used to say ” had a serious nutty.” I’m talking a crazy outburst in print.  I’m serious, he was FURIOUS. “He should fax her?? ABSOLUTELY NOT.  “If she wants to call him he would try to talk to her but he will not answer specific questions.” The questions she asked, were so innocuous, I have no idea why he made such a fuss. Perhaps he realized that he was dabbling too extensively in my case, acting as Head Dr. of Everything.  He also mentioned that “if I chose to see a doctor in MY INSURANCE PLAN, so be it. His implication was clear, without saying it, he made it known that he felt “You get what you pay for.”

Unfortunately, I need to see this doctor a few times a year for my auto-immune disease/thyroid illness.  I am considering looking for a second opinion and more importantly, some sensitivity. This man is well-known in his field,  however, he is not well-known for his “bedside manner.”  When these magazines come out with their rankings of” BEST DOCTORS” who is filling them out? Other doctors?  Which leads me to think that it might be a little biased.  Maybe they should ask patients and ex-patients their opinion to get a clearer view.  A great idea: ex-patients, that would be ideal “why did you leave the practice of Dr. So and So?. Please explain. Now that is a survey I would read with relish.

Apparently the phrase “First do no harm” was meant merely in a physical way. Some doctors should think about their actions and take responsibility for them. A person is not just a symptom, we are multi-faceted people who deserve YOUR respect as well. A doctor who treated the whole person? That to me, would certainly deserve the title of BEST.

On Being A Patient, Again

I never stopped being a patient, not since my thyroid went out of wack 3 years ago, not since I was told I had Fibromyalgia (and then told it was a “lazy diagnosis”)  Not since the prednisone, the hospitalization for eppiglottitis the 24/7 cough that would not go away, not since I was sent to the Pulmonologist, the ENT  the addition of 5-7 different medications. Not since my stint in the packed emergency room with an overnight stay in the hospital with the worst pain I have ever had in my life.

Here I am again, world! Stuck and pissed off with yet another chapter to my ever-so-boring and relentless saga of pain, chronic pain, auto-immune diseases, Hashimoto’s Thyroiditis, lack of energy and tonight,  a really bad, horrible, disgusted and angry, almost-in-tears mood.

The latest is that my Synthroid level ( TSH) is very, very low, too low said the doctors.  To those in the Club of Thyroid Disorders out there, (COTD- I made it up but it works) I know you will understand. The T4 is perfect. One doctor, the evil endocrinologist (lower case on purpose) sent a prescription (albeit the wrong prescription) in the mail telling me (no, writing me) he was surprised with my numbers but I should reduce the Synthroid medication (buzz word) to 50 mcg. First I was at 88, then 75, now 50???   That’s like telling someone who has the flu, to get up out of bed and do somersaults while standing on their heads, backwards.  I’m down enough people, now this? It makes no sense.

I wrote to my Guru Dr. in the City who handles the type of Autoimmune Disease (Hashimoto’s Thyroiditis) as in***THYROID DISEASE  to tell him. He suggested that my” Endocrinologist” do a simple TRF blood test and he guessed I might have something called Secondary Hypothyroidism ( I know, I could so be on Gray’s Anatomy with the amount I’ve had to learn and remember.)

Here’s the problem. The nasty, dull, mean-spirited endocrinologist (lower case on purpose again) who I am going to DUMP as soon as I find a new one, refuses to talk to me on the phone. Just for a couple of questions. “No, come in”,  he said. “I just want to ask him a question” I pleaded to his nurses “No, come in.”  I’m seething. First of all I have never heard of a doctor that won’t take a phone call for a question (I wasn’t demanding to speak to him at that moment) and that absolutely refuses to return a phone call from a patient. Second, he knows about my Guru Doctor in the city since I have copied him on everything. (Do you think this could be a terrritorial thing?)  Third, he did not believe that I had, indeed, a note from my Guru Dr. to suggesting he test me for TRF (whatever it is). No. What? You heard me. No. No phone call, no question, no way, no how. “It is too difficult to explain on the phone” the nurse parroted. Are you kidding me? I had one question about the blood (yes, in the lab in the office) test and a simple thought: wouldn’t it make sense to test the TRF level FIRST (as my Guru Doctor said) then to start on a regimen of a new medicine that could take 4-6 weeks to kick in? Isn’t that throwing the donkey in front of the carrots? (or whatever that stupid expression is.) Not to mention, I do not want to go back to a doctor that treats me with such disrespect (and he always has). I know he doesn’t know that the fifty dollar co-payment would be hard for our unemployed selves. I understand that, but, a 30 second phone call?

Well, you know what the answer is I’m sure. “No”. So here I am, calling new Endocrinologists (one is on vacation until the 20th, the other does not return phone calls) waiting to make an appointment. Oh dear Lordy, Lordy, it’s July and the doctors (at least the ones I’m trying to reach) are on vacation, and of course you cannot leave a message.

I have that creepy, queasy, angst-ridden feeling in my stomach. What now, I ask? I can’t reach any doctor AND short of sending an “I BEG of you” message to my Guru Doctor (which I will do anyway in the early a.m.) I will be sitting home in a flurry of frustration and anxiety. I will be sitting on my bed, fed up, confused and furious and yes, a little scared too. A little courtesy, perhaps DOCTORS?? Yeah, right.

I feel totally helpless and demeaned. I feel anxious and confused and ignored. Does anyone understand this?  Is this the time for an out and out binge on sugar- laden treats?  Can I run and hide from my anxiety for a few minutes with cookies and chocolate,  and that sweet powerful surge in energy? This doctor says Yes. Absolutely. Starting Now.