Hitting The Wall: Fibromyalgia

English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). To discuss image, please see Template talk:Adult female diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Fibromyalgia and Fun. An oxymoron. Who would argue with that? Everyone who has this chronic pain illness.  I’ve recognized a pattern, on a “good” day ( rare)  I can get out of the house (showers are optional) in the morning and I am able to do a couple of errands. The maximum time spent out two-two and a half hours. The other day I pushed myself to three hours and right in the middle of the sidewalk I hit the wall.

Literally, I stood on the street and felt all energy drain from me. I couldn’t speak, walk or focus. Finally, I managed to get to my car and after a few minutes of sitting down, having something to drink and eating some peanut M & M’s, I was  able to drive home. *(Think about doing this fellow Fibro Buddies, yes, its sugar but it’s also protein.) Once home, I dragged myself upstairs with my hands on the stair rails, one step at a time, like a toddler. I flopped into bed with my street clothes on and passed out for three hours.

Rolling around in my brain for the last day or two is a notice posted on Facebook about a fellow Fibro sufferer who has taken her own life.** This is not the first person to do so and it makes me so sad. Was it the pain, the frustration, the depression, the anxiety, headaches, all the above? Did she take antidepressants or anxiety tablets?  Was she faced with uneducated and unkind people who didn’t believe her?  Did people think she was just “complaining” a bit too much or maybe she had a doctor that  rolled their eyes and told her to just calm down and stop whining.

I will never know, but I cannot stop thinking of this woman, so desperate to leave her life, her pain. I don’t know her but I feel FOR her. Yes, we do have a chronic illness that is limiting and there is no cure for it. BUT, through trial and error, it can be maintained. You need to stay and fight for your life, for your children, husband, partner, mother, lover or precious dog or cat. You need to fight for YOU.

We have support groups for this very reason. Please don’t give up. Join one of the many wonderful groups on-line if you need support and, if you are EVER thinking about taking your life, let someone know, a friend, a neighbor or call the hotline below. I’m begging you. I care, we all care. We understand. There is a tomorrow that will come very soon and it may very well bring with it lower pain levels and a better day. The day you are having is probably the worst it can get, give your life another day, another chance to be happy. That’s all I ask for.

**No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.

 

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Welcome To St. Croix, As If

Old Danish Customs House, Christiansted

Old Danish Customs House, Christiansted (Photo credit:

Dear VERY KIND, RICH PERSON,

Is it May yet? I know, I’m daydreaming. I know it isn’t May, its dull, depressing, December and I know pretty much everyone is on vacation except for me and my family. I am grateful for what I have, truly. However, I am a tiny bit envious of all who are vacationing in warm climates while my chronic, painful bones tighten up. In my mind I am trying to conjure up some images that A) might torture me for months or B) give me the impetus to get through the ugly, soggy mushy yet cold winter. Either way, it’s something to do.

I just want to talk. I don’t believe in miracles, trust me, like I didn’t really believe I would win the lottery but it’s fun to think about so here we go: It’s only December and just because we had one day, sorry, two days with 20 more seconds of light it doesn’t mean it’s time to celebrate and dance barefoot in the grass with flowers entwined in our hair. It’s twenty bogus seconds, that’s it. But, we take what we are given, no, there are no hot dogs on the grill or s’mores from the barbecue just quite yet. Get inside, it’s freezing.

We eat tomatoes that look and taste like wax, they are not even orange-red but some pale combination of yellow and green and plastic, utterly tasteless. The fresh fruit that we long for in the summer has whittled down to apples, oranges, a few mangy grapes, drooping from their spines as if they were just begging to be put out of their misery. Do these grapes really look like they have the will to live? No, poor things, just put them in the back and don’t let us witness their slow, disintegrating death, it’s just too sad.

The sky, again, is white and black, sometimes blended into gray. I’m staring into my yellow pillow that I bought to conjure up what I remember as sun but it doesn’t do the trick. “Surround yourselves with things you love” is not always easy. I love the ocean and sand and seashells but even my globe filled with delightful seashells and sand does not make me feel like I am on vacation in St. Croix, or any of The Virgin Islands, Mexico, or anyplace warm. I’m woefully stuck in reality.

Most people are away for this long holiday break to places I’ve never heard of much less been to. Families with a lot of money book places far in advance so they have vacations to look forward to, I envy them. I rationalize my thinking: if this was my norm, flying somewhere every break, would I take it for granted? I admit, I wouldn’t mind finding out.

In my mind, I’m vacationing in St. Croix, or Jamaica, Hawaii or Australia. These old weary bones that ache constantly would just have to settle in for the long flight and suffer, knowing that in the end, I would see skies a beautiful shade of blue, silky, soft sand and walking on the water’s edge. My only goal is to worship and enjoy the natural elements of life. Given the chance, my family and I can be packed in ten minutes and we thank you so very much.

English: St Croix

English: St Croix (Photo credit: Wikipedia)

Plinky Prompt: Seasons Changing

Autumn Colours (Fall Colors) - Red Tree

Autumn Colours (Fall Colors) – Red Tree (Photo credit: dbrooker1)

  • Fall Colors

    Fall Colors (Photo credit: msn678)

  • For many of us the seasons are changing, bouncing unpredictably between cold and warm. Are you glad to be moving into a new season, or wishing for one more week of the old? See all answers
  • Mid-season replacement
  • Are you kidding me? One more week of the old? Try NEVER MOVING OUT OF THE OLD, but I will take one more week if that’s all I can get. I hate the cold winters, the chill goes through my bones and is trapped there.
    I have always hated the cold weather but having a chronic illness, Fibromyalgia, makes my bones stiffen and hurt, trapped in place.
    In my fantasy, I am wearing just a long-sleeved pink cotton shirt, jeans and sneakers. No jackets, no scarves, no mittens or boots. The leaves are full and multicolored and glowing in the afternoon sun. I feel comfortably warm, my head turned to the sun, I’m smiling.

  • photo credit (wikipedia) to above mentioned photographers
  • msn678 and dbbrooker1)

Forecast: Snow And Pain

Ground blizzard conditions in Ontario. HWY 26 ...

Image via Wikipedia

I never wanted to be a weather forecaster but I have found if I listen to my body, I truly, can predict the weather. This is not a fun job for me; nor is it a fun job for any people who have Fibromyalgia or another chronic pain disease. There’s a blizzard going on in the Northeast and before I heard about it, I felt it. I felt it in my tired and achy bones and muscles. I couldn’t stand up from a seated position without a lot of pain. I needed to hold on to someone’s hand because I felt off-balance. Some experts say it’s related to the barometric pressure changing. My degree in weather forecasting is not that advanced.

My bones, muscles and body hurt enough as it is. Today, my back and shoulders  and legs are aching and cramping horribly. I am having trouble getting up, sitting down, walking (shuffling) while holding on to the railing in my house for the stairs, one step at a time. I also have the infamous Fibro (Fibromyalgia) Fog that causes me to lose my train of thought or forget something that someone just told me ten minutes ago. It’s bad enough that it’s painful but feeling embarrassed and humiliated is another blog post altogether. I do not understand this mystifying illness; that said, it is hard to expect others to understand it as well.

We’re in the middle of a snow, blizzard emergency now.  I am praying for the electricity and power to stay on so we have heat all night. I’m piling on the blankets, flashlight at my side, candle at the ready….just in case.  It may look pretty outside with snow drifts and the sheets of snow coming down sideways in the light of our windows but it doesn’t feel pretty. It feels horrible, it’s like clenching your teeth in every body part. My neck is stiff and constricted, my shoulders are tight, I feel like the Tin Man of the Wizard of Oz but there is no oil to relieve my pain. I hope for continued heat for all my friends but especially my Fibromyalgia friends because we really know what COLD feels like.

Stay warm my friends, we’ll all get through this together. Huddle under extra blankets and lie still. There will be hot coffee in the morning or English Breakfast Tea with milk and sugar. It’s just the beginning of winter; we have a very long way to go.

The Awareness of Being

Stairs to Nowhere

Image by Rennett Stowe via Flickr

I am a chronic pain sufferer, and have been for the past four years. I consider myself lucky most of the time, comparing my pain threshold with those of my fellow sufferers. I know that pain-free is no longer an option, though I admit it took me some time to accept this.

I was on vacation last week with my family and we went to a small restaurant, up a flight of stairs. I gripped the hand rail on my right, yet I still couldn’t move. I reached my left arm to find the left hand rail and I tried to move. Nothing happened. This is how some people live all the time, this is a limitation, this is an awareness that made me think of other sufferers. People in wheel chairs, people with a disability, and less so, people like me. I remember that the steel handrails were cold, and I remember not being able to get up those stairs. Luckily, my husband gave me a push up and I made it up one uncomfortable step. It took a moment for me to get up another step and when I was finally up the six  steps, I was weary and tired, and every bone in my body hurt.

It was not attention I was seeking nor was it the awareness of myself feeling weak. I thought of other people who have much more pain than  have. I also felt bad for people who didn’t have a loving husband/partner to help them up from the rear. I understood, in those few minutes of time, what it felt like to be physically disabled but more aware of this disability for people who have to do this every time they think about taking a step.

I appreciated sitting down at the table though I felt a bit unsteady. I remembered to drink, a sweet refreshing fruit juice drink that lifted my spirits, and of course, my sugar intake.  I made it up those stairs all the while thinking of how I was going to get down. I had no choice in this situation, I knew I would have to do it and I did. I felt grateful for the awareness of my limitations in comparison to others. Those of us with chronic pain do not have a wheelchair to use for a clue to the outside world, or a cane to show others are limitations. We live in silent awareness and while we understand each other, it is hard for outsiders to understand. We are the invisible victims of pain, of suffering and only with communicating with other people, one by one will we get our message known.

Pain is pain, we all feel it, we all deal with it the best way we know how. In our hearts, we should acknowledge those with more pain, it doesn’t lessen our own pain, but it emphasizes our commitment for understanding and awareness and most importantly, our acceptance and empathy for others.

Pain, Feels Like Old Times

This morning, I tried to get out of bed, tried being the operative word. I felt like I did when my Fibromyalgia was in full bloom. Not that it is in any way anecdotal to flowers, delicacy or beauty. I feel like old times. The hard part is that I don’t know if this is a flare-up, even though I am still taking my medications. The only one I haven’t been taking recently is the Estrogel, a gel that you put on your arms used for Hormone Replacement Therapy. Could that be a cause for what I am feeling?

When you hurt all over, and struggle to get up the stairs,  when you don’t know where the pain and aches are coming from you feel even more at a loss.  I went away for a few days over the holidays, we took a plane, could it be a bug that I caught from the plane? It’s so hard to diagnose yourself when you have a multitude of factors. I feel like I have the flu again, without the temperature. Exactly the same as when I had Fibromyalgia which my autoimmunologist says is “a lazy diagnosis. ” He is treating my auti-immune disease (Hashimoto’s Thyroiditis) with immuno-suppresant drugs, which, of course, have side effects too.

I am sitting or rather lying in my bed afraid to move a muscle. Every muscle and bone in my body is in pain right now and I haven’t felt this way in a long time. It gives me time to appreciate how well I was doing compared to this but I am now questioning what got me here? Sometimes, those of us with chronic pain, unfortunately, blame ourselves. That is where I stand right now. Motionless, covered by piles of blankets and feeling upset, both physically and psychologically. I blame myself for stopping the HRT when I did not hear back from my Dr.  I blame the weather, it’s nasty cold snap feels like it’s physical abuse, striking me all over my body. It could be something, It could be nothing; the reality is, I honestly don’t know.

Do I start reapplying the HRT gel when this could be a virus? I forgot how bad I felt before, and I am not happy to have a reminder.  Do I continue the HRT when inherently I am not comfortable taking bio -identical hormones? I don’t know what I have or what to do. I don’t want to take more and more medicine but frankly today I am a complete mess. When I took Advil I felt better, apparently it has worn off. I feel scared and vulnerable all over again, I want to hide under my pink fuzzy blankets. I want to lie still, as still as the night, to try and assess what I’m feeling and why. The truth of the matter is I may never know, and I feel incredibly helpless and alone.

Inject Yourself !!!

It’s  been a very long time since I started my journey into medical madness. First stop: Menopause. Second stop: an underactive thyroid. Third stop: Hashimoto’s Thyroiditis (an auto immune disease) Fourth stop: Fibromyalgia. I was being treated for my underactive thyroid with  Synthroid and more synthroid. Cymbalta was added on top of Prozac, intertwined with various other drugs for various other ailments. Then, a very long period of feeling like I had the flu without a temperature, no energy, no strength, every body part and his brother ached, all I wanted to do or was able to do, was pretty much, sleep. I felt and looked like hell.

That was about a year and a half ago until I was forced to see a specialist in NYC that dealt with joint diseases and auto-immune diseases only. That became the start of more medicine, but more hope.  I had to keep a journal of how achy I was (yes) and how tired I was (still yes.)  Then came Plaquannel, high doses of Vitamin D and after that, folic acid. After a few more months he added methotrexate and to contradict some of the really bad side effects of methotrexate he added Levocoir or something that sounds like that.  That worked and it didn’t work, sometimes it worked and sometimes it didn’t. There was no rhyme or reason as to when it would work and when it would not. In addition, he had me see his colleague ( girlfriend) an OB-GYN, and start me on bio-identical hormones.  I always swore, absolutely, positively swore I would NEVER , ever take HRT (Hormone Replacement Therapy.  Again, I started rubbing the Estrogel in my arms every day. When does it stop? When do I stop?

Since I have not reacted most positively to all the drugs listed above, my guru Dr. wants to go to even stronger meds, including injectible ones. That’s right, injectable drugs, in my thigh, given by me, every day. From the diary he asks me to keep from one to ten, one being a mess and ten being (in my words)euphoric or on top of the world, I am at best a five. He is not happy with that number, he wants it to increase to an eight. I will never be a ten, with my auto-immune disease, but I should be higher than a five or sometimes a two. At least that’s what he says, my Guru Dr.  Me? I’m not so sure.

How much though, is too much?  How much more medicine to I want to take in my already overly medicated body. Why isn’t a five acceptable? Are these his standards, or mine? I am weary of taking stronger drugs and injecting them daily. For what? A higher quality of life? I have an acceptable quality of life and I am beginning to think that that’s enough for me. The name of the drug he wants to introduce by injection is Enbrel. Since I become hysterical at looking drugs up on Web MD, my husband always reads it first. For him to shake his head and say, “I’m not so sure about this one…..” is tantamount to me shrieking, feeling sick and fainting all at once. My husband is a calm man, I am not considered to be calm when it comes to medicine, illness or personal safety. I admit it. I worry.

Yes, I would like to feel better than I do but at what cost? Doctors often breezily refer to drugs with well known risks as if they were telling you to take a multi-vitamin.  I am going to have to seriously think about the next step, although I’m pretty sure I know what I am going or NOT going to do. I don’t want more drugs in an already inundated body. I don’t want to inject a drug that has more negative side effects than it does worth. I’m sick of all of it, sick of feeling poorly, sick of taking drugs and sick of Dr.s and yes, sick of myself.

I can’t tell you what I am DEFINITELY going to do, I need much more information. Why is a five in a range from one to ten such a bad thing? What about the hidden side effects of all these different medicines? And, what about quality of life? Maybe being a ten is not for everyone, or a nine, even an eight. Now I am going to weigh all the risks and get more facts,  but, for the meantime I will stay at five; and just be very grateful for that.