UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

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I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

These Days

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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

Lost And Found

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I haven’t been writing at all and I don’t know why. It’s always a bad sign if I don’t write. Now, I need to question myself, in public, about what’s going on. The past week has been filled with pain, intensely painful legs out of nowhere with nothing to help dissipate the pain. Tylenol, Advil, Aleve, even Tramadol which I have been taking twice a day. Of course, I thought, I jinxed myself when I wrote that I was “lucky”that my pain was less intense than some.  Past tense. Now I have a new pain that I didn’t think was possible and I don’t know where it came from or why it still exists. That new pain jolted me to a new reality and I hate it.

I’m bothered that my sister is my sister and not a friend I would pick and that the best friend I had picked has completely lost herself,  in her marriage and her children and has not resurfaced for years. The stress in the house has become unbearable at times, with my husband unemployed and a Junior and Senior in High School. They have essays to write, exams to study for, colleges to apply to, jobs, appointments, homework, studying. We all feel the stress around us, inside us, despite of us. My children and husband are what keep me going; I not only love these three people, I adore them. They make me laugh, they make me smile and when I was about to cry today, they knew it long before I did.

Yesterday I laughed so hard I had a stomach ache, my kids put up a fake unicorn tapestry to prank their father for going to the Cloisters. After dinner with our friend Janis from California we all ate chocolate, one with a spice called cholula. We laughed and gasped through the pain and I downed two glasses of Arnold Palmer lite iced tea and lemonade afterwards. I went to bed smiling, the laughter being a delightful and unexpected present.

The holidays are almost upon us and I start thinking of my dad, who passed away 8 or 9 years ago. Why is it that I can never remember the year he died? Not being good with numbers has nothing to do with it, it’s a mental and emotional block that I can’t seem to get over. My father was the buffer in the family, the diplomat, the peace-maker. Without him the rest of the family is a triangle of raw emotions.  I was the one who lost the person who understood me the most and who thought identically like me. There is a gaping hole in our family and as everyone who has lost someone they loved knows, there is nothing to heal that pain. It’s like a festering, open wound and once in a while someone tosses in a cup of salt every now and again. There is before and there is after. Your whole world changes forever.

My birthday is coming up and as much as I used to love my birthday this year it feels like a dull ache. I don’t care that I am another year older, I was never concerned with age. Whether I am 53 or 54 doesn’t mean much to me at all. I don’t hide my age and I don’t erase my wrinkled forehead. These fine lines come from experience, both good and bad, they are here to stay. Earlier today I was thinking of my “bucket list”.  The first thing that came to mind was a tour of the tulip season in Holland and snorkeling in  some Caribbean Island so I could escape the long, cold, snowy winters.

Life is short, I am trying to make it fun. Every day is a gift and I should appreciate it but sometimes I get swept away by all the negativity and I need to pull myself up and out of that empty hole in the musty, brown earth, inch by painstaking inch. I think I have found my voice again so after I dig myself out, I will be facing the sun.

A Warm Welcome For New Chronic Pain Members

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Dear New Chronic Pain Member,

I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve  all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.

Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail  on the wall  called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy  seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.

For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.

This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here.  My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.

Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother)  Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.

I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others:  TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.

I have no illusions that I will be “cured.” There is NO cure for my illnesses.  I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up  when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.”  “Get more exercise” says my mother. “Go to a nutritionist”says my sister.  They mean well, they just don’t get it and how could they? We live in a different world.

The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower,  purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.

Hashimoto’s Thyroiditis and Fibromyalgia # 2

1/11/10

UGH. DOUBLE UGH.

As some of you know, I have Hashimoto’s Thyroiditis which even though it sounds like a special on a dinner menu is an auto immune disease. Before being treated for that, I was formerly diagnosed with  Fibromyalgia.   My Endocrinologist gave me Synthroid when, after menopause, I was diagnosed with an underactive thyroid.   Synthroid brought my thyroid levels back to a normal range but I still felt absolutely horrible.   Months and months later I found my way to a Rheumatologist who diagnosed me with Fibromyalgia and prescribed Cymbalta. I still felt horrible and about a year later I found my guru Dr. who is the Head of Auto Immune Diseases and Rheumatology at a NY hospital.  I think I might be in love with him… he’s a genius.

I  take Plaquannel every day.  And folic acid.  Oh, and methotrexate with a high dose of Vitamin D, twice a week. It pretty much takes me out of commission 4 days of the week  because my stomach rages against the methotrexate for two days each time I take it.  I take Cymbalta for the Fibromyalgia (which I may or may not have) and an anti-depressant used for anxiety issues. I am my own chemical compound. I was also on Prednisone which at high doses makes you feel incredible, high, and young and when you lower it significantly and slowly, you feel like you are in the movie “Cocoon” where the elderly first are given a special potion to feel young and fabulous and later on it goes away and they feel old and horrible again. Heartbreaking but true.  I’m not proud of all the medications I have to take but I am not ashamed either.

According to my guru Dr. in the city “Fibromyalgia is a lazy diagnosis.”  His theory is that anyone with an auto-immune disease like mine will feel achy, fatigued and have muscle pain.  To me, the patient, I don’t care what you call it, as long as you can help me feel better.

It took two complete years to even get on the right track of my initial diagnosis and while I think I am on the right track, it doesn’t mean that I feel swell all the time. It means I feel better and have learned to handle and predict certain situations. I am also 53 and not 23 and that does make a significant difference. Somewhere in this medical mystery of mine, I have had many broken  bones, sprains and torn ligaments;  I think there is a connection with the Hashimoto’s but not definitively.  All I know is that  it hurts and takes a very long time to heal.

My experience with the above urges me to say the following: If you feel that something is wrong, believe it. My internist didn’t believe me at all and actually left the office in a huff when I started crying from all the pain. Go to different doctors for their opinions. Don’t be scared that Dr. Jones will be insulted if you see Dr. Stevens. Nobody cares. Hardest but most important of all, believe that you will get better! You may not be perfect but you will be better and you do need patience for that.  Keep trying and keep believing that you will not always feel this bad. Believe me, I am still learning  and relearning that lesson every single day.

Good Luck!