Same Old Pain, Now With Migraines

I’m used to the pain I have from Fibromyalgia, it’s not bad most days, no pain killers needed. Sure, there are a few days, mostly weather-related, that it gets worse but I can  stand that too, most of the time. It was under control until one day when I started having a headache that would not go away.

 

 

 

 

I’ve had plenty of headaches before mostly in the middle of my head and that’s how this one started so I thought nothing of it. I took Tylenol, the only medicine I am allowed  (Chronic Kidney Disease) to take, but it did not help. It was a mild headache for two days, I thought nothing of it.

Suddenly, the pain started crawling up on the left side of my face. It settled there like a jumbo jet that had just landed at the airport and was pulling straight into the proper gate. Passengers came off the plane then airline crew, the plane was cleaned and this baby was not going anywhere tonight. The headache had landed.

 

It’s hard to imagine I have another pain symptom but I accept it as my curse, this ugly life of mine. At almost 58 years old I now get migraines. “Welcome to the club” I mutter angrily under my breath, asking: “Why me?”

 

The first migraine, which ended me in the Emergency Room of the hospital moaning in pain and begging for a shot of something, anything, to relieve the intense, hammering pain happened a couple of months ago. “Nice to meet you, meet your new doctor, your Nurologist”.

I thought it was a one time thing, A visit to the Emergency Room, a shot and hydration and two days later I was fine. I went home where the lights were dim, I was safe in bed and all I wanted was darkness and no company, no radio, no television, just black solitude. I laid on my back and pulled the covers over my forehead, yes, this was my safe place, I promised myself the pain was over, gone for good.

Unfortunately, it came back with a vengeance twice more. Once a month ago and one two weeks ago.  I tried all the tricks, the medicine to supposedly make it go away before it really hits, a dark room, breathing slowly, ice, pressure points, Reiki, meditation….you name it, I tried it but it is clinging on to my head with traction and beating harder and harder.

It is now moving to the center of my forehead and the hammer is following after the movement, banging away, beat after beat rhythmically while all I can do is shut down and shudder.

Deutsch: "Kopfschmerzen". Die wohl b...

Deutsch: “Kopfschmerzen”. Die wohl berühmteste – stark von James Gillray beeinflußte – Arbeit in einer Reihe von sechs Blättern “medizinischer” Karikaturen, in denen Cruikshank Krankheiten als Teufelswerk brandmarkt. Erstmalig publiziert: 12. Februar 1819. Originalgröße: 210 x 255 mm (Photo credit: Wikipedia)

I know this isn’t fair, I know that life isn’t fair. I have accepted this new symptom because i don’t have a choice. It has joined the family of maladies that already exist, trapped in every limb of my body, from head to toe.

 

Since I was five I’ve always had a very low tolerance for pain, my parents used to tell me that. If one orange baby aspirin worked on other children to get their temperatures down, I needed two. I am still that way, believe me, it isn’t fun.

Recently, a friend told me to push my Internist to check more complicated Lyme Disease tests and I will do that. What are the chances? I don’t know but I will try. I don’t want to get even remotely excited.

Been there, done that, way too many times. I have no hope. I feel battered.

Enough already. This is getting old. Fast.

 

 

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NATIONAL SUICIDE PREVENTION DAY

I’m horrified. I knew all about Invisible Illness Week and wrote about my chronic pain and Fibromyalgia but just found out today that its National Suicide Prevention Day? Something is so wrong here. Why didn’t I know this day was coming and if I didn’t know, I bet you many people didn’t either. That’s shameful.

I feel embarrassed and I also feel ashamed for the people who put this together for not advertising it better. This is NOT something to take lightly, I think we need a RE-DO here, maybe another one next month? Actually, how about one every month? Now, that, is a great idea. We need more prevention and mental health funding!!!

I’m here now and I’m begging anyone who is contemplating suicide to please stop for a second or two and take a deep breath. Thanks. I’m not asking for your whole life but how about a minute? Just read one more sentence.

Think about the people who love you, truly love you, who you will leave behind. People  who WANT you in their lives in any shape, in any mood. They love YOU, the way you are, unconditionally. I’m a mom, I know about unconditional love.

Depression is no fun, we know. We’ve all been through it but there is more help now and different medications and I’m positive that you know at least one good friend or one sister or brother, husband, wife, lover or cousin that would stay with you and help you. There better be, because they would have to answer to me if they don’t.

Instead of taking your life, write your thoughts down, put them on Facebook, email a friend. Email ME. I will listen. I will hold your hand, at least through the computer, and I’m no genius or therapist or doctor.

I’m a regular, really nothing special person, that loves dogs more than people, adores jelly doughnuts, hates to exercise, am technically clueless (ask the people at the Invisible Illness Week) but somehow muddle through things, through life. My life hasn’t been easy, you need to trust me on this one. I can’t lie, it shows on my face in a second.

So, do me a favor, take a few deep breaths, walk away from wherever you are and call a friend, or a hotline, listed below, TELL SOMEONE YOU NEED THEM. ASAP.

Communicate and reach out. But, please, don’t harm yourself, it won’t solve anything and will destroy those that love you. I don’t know you but I know you are worth it, you are worth another day, and the day after  and many days after until you can wake up one day and think back and say “Wow, that was close but I’m so happy I didn’t go through with it.” Then, you too, can help people step away and to live their lives as they should. You will be their hero. I can see it now. I just know it.

National Suicide Prevention Lifeline

National Suicide Prevention Lifeline (Photo credit: Wikipedia)

 1-800-273-TALK

We Are Warriors, Not By Choice INVISIBLE ILLNESS WEEK

I’m not going to lie. If I had a choice of having Fibromyalgia, the umbrella tree illness and all its branches and not having it, I would drop it in a hot fire-searing second. But, like any illness, we don’t have a choice. We have it and the more we fight it the less happy we are.

I do think it takes a long time to finally accept this chronic illness, beyond anger and months of crying, not to mention countless clueless doctors and the raised eyebrows of many who think we are all nuts. I don’t know about you but I want to slap that question mark look right off their smug foreheads.

One of my doctor’s, a well-known person, left me sobbing in her exam room, after diagnosing me with a thyroid condition. I was already on synthroid and still in agony when she clicked her expensive heels, saying “there’s nothing I can do for you” and marched out. She hadn’t diagnosed Fibromyalgia, she didn’t have a clue.  This was eight years ago and the image still is clear in my head.

We are warriors, all of us, invisible illness warriors. You probably have heard of us but you may not know who we are and how we suffer. We don’t offer up the information, and if you know we have a chronic illness you ask in a perfunctory manner only. Our answer to all of you when you casually ask ” how are you?” is “fine.” We always say “fine” at least I do. Not many people really want to know the details and if you think about it you will agree. That’s okay, it takes too long to answer, doesn’t it? “Fine” works for both of us.

If you REALLY want to know there are always  follow-up questions or even a cup of coffee or lunch. We tend to be independent, close to other people who have the same ailment, the ones who know what chronic pain feels like. Some of my closest friends are women  who I have never met yet I love and trust implicitly, met on a Chronic Pain/Fibro group on-line. THESE women and I are here for each other even if only by e-mails, messages or by phone. I thank G-d for these women who are more loyal, supportive and loving than some of my so-called “friends.”

Radical illness

Radical illness (Photo credit: Wikipedia)

We know that there are more cloudy days than sunny days. We don’t expect sunshine all the time but even when the sun is weaving through the clouds, in and out, we appreciate the moments. We whisper our thanks in a hushed silence, trying not to let those dark clouds come further down and overwhelm us. It takes effort, I know.

 

 

It’s the in-between season now, we haven’t had that first bite of crispness in the air yet, like the bite of a fall Macoun apple, but, as evening comes rolling in, and darkness shrouds the trees, you feel the rain that is soon to come. You feel it in your bones, they ache due to broken wrists or ankles, the weather forecasting of having Fibromyalgia.

We can’t change our world, we can barely change our body. What can we change? A few things, our diet (no, I won’t give up coffee and ice cream) and our attitudes, different doctors. I could write a book on the doctors and methods I’ve tried. Let’s face it we are stuck, but we are alive to see our children grow up, a dog to love and for the dog to love us back. Having my dog rest her head on my knees or stomach makes me incredibly happy when I have to lie down. She is a rescue dog but really she also rescued me.

 


Dedicated to my dear friend, Judith.

 

 

 

 

 

 

 

National Invisible Illness Week: September 9 – 15th

Fibromyalgia Eye

Fibromyalgia Eye (Photo credit: Vinally2010)

Who am I?  Can you see me ? Over here. The woman with the curly brown hair, green eyes, the one sitting down on the bench inside Target or the supermarket. No, I’m not lazy, I’m tired. Did I sleep well? No, but I don’t usually sleep well even though I have medication for that. Do I feel rested when I wake up, eager to take on the world. Well, no but I am older. How old? I’ll be 57 in two weeks. Well, it might not sound old to you, to me it’s ancient.

I have a childhood friend who claims she has Fibromyalglia  but refuses to see a rheumatologist. What? Yes, she sees a general doctor, one who knows about endocrinology for her thyroid.Do YOU see the point? Right, me either.  I have tried so hard to help her feel better but I’ve stopped, she obviously doesn’t want to feel better, she wants to complain.I grew up with her, no other bond, my mother remembers she’s been complaining since she was five, I remember it too.

I had to go to neurologist after I suddenly fell, on my back and test after test came out perfectly normal except for one: I had no balance. He had me walk a straight line in his office as if he was a police officer and I was a drunken driver. I zig -zagged on that line as if I had an overdose of margaritas and tequila sunrises and amaretto sours, mixed together in a huge bathtub big enough to fill a college party.

“Hmm” he said, “you have no balance” I nodded my head, up and down, ‘yes, I said, I know’ but he shrugged his shoulders and sent me away and said “I was fine.” If I was fine, why didn’t I have any balance? “Oh, it’s probably your Fibromyalgia…”he said. I’ve found now that when doctors don’t know what you have and they know you have Fibromyalgia that’s the answer they give. Nobody wants to take the time to figure it out, they don’t care, half of them don’t believe in the diagnosis anyway; since we don’t have many answers let’s all lump the various symptoms together toss them into a bag and label them Fibromyalgia. That’s easy.

What’s not easy is not having a cure and there really no potential in site. I happen to have a wonderful rheumatologist in the city and he is not only incredibly knowledgeable, he also really cares and that is an amazing combination and very hard to find. I don’t have as much pain as others but I have no energy. I can do one or two errands depending on the day and I never know in advance. It’s hard to make plans. Close friends understand, others don’t, want to know who your true friends are? Oh, it’s not hard at all.

I have a handicapped parking sticker for my county, you should see the dirty looks I get sometimes when I try to get out of the car. People judge on no information, they don’t ask, they immediately judge. They don’t notice the pain in my eyes from sitting in my car trying to stand up? No. So they notice the pain in the back of my eyes so I don’t cry out?  I don’t look “sick” is that it? That’s what I thought.Do not judge me or my handicapped sticker, I don’t judge you.

There it is, I don’t look sick therefore I must not be sick? Wrong. If my legs were in casts or my arms and shoulders too perhaps you would understand, but just because my pain is in the inside doesn’t mean I’m not sick. Sometimes, I wish I could show you my pain, physically. because emotionally, you’ve already done your very best to make me feel like worse than I already do. Maybe you could stick my whole body in plaster, maybe then you would understand.

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.