New Doctors

Posted on May 20th, 2010 by loup.
Categories: Fibromyalgia.

I have an appointment this afternoon with a new GP. I am a little more than nervous. Why? Well, when you have fibromyalgia getting a doctor who understands it or has any compassion about it is rare.

You wouldn’t believe the slew of asstards I had to endure before I found doctors who not only knew what fibromyalgia is but they understood just how devastating it could be.

I am trying to look on the bright side – I’ve not had an asstard since moving over to UNC and Duke. But if I’ve learned anything “there is one in every crowd”.

I wish my doctor didn’t go to a specialty but whatever makes her happy. She is a great doctor and people are lucky to have her on their side. I will just miss her.

So here is to new doctors – let’s hope I don’t have to “train” them. *grins*

2 comments.

Fibromyalgia

Posted on May 11th, 2010 by loup.
Categories: Fibromyalgia.

May 12 is Fibromyalgia Awareness Day. But to steal a line from the Autism Awareness campaign – in this house, every day is Fibromyalgia Awareness Day.

Fibromyalgia is the cruelest thing. Just when you think you can not go on one more moment the pain and the brain fog lets up — almost to a point where you start to feel normal. You find tiny spurts of energy where there was none before and you think maybe now you can get on with your life.

Then bad days start to creep back in, you try to cope. You try to keep your head up and remember that good days are just around the corner. Then bad days are there full time and you start to forget what a good day feels like.

You try everything – nerve blocks, infusions of medicine, pills, massage, hot water, walking, removing sugar, removing chemicals, adding oils and meditation. Heating pads, sleeping pills, breathing exercises … you become desperate to be the person you used to be.

You realize that person isn’t there anymore. You are forever changed by this and there is no going back. You see the world differently. You move slower. Your obsessions change.

I am grateful that I have Michael. He is the best thing that has ever happened to me — healthy or sick.
But when I am sick – he has the patience and the understanding that I need to get through the day. I am my own worst critic, judge, jury and enemy when it comes to all of the things I can no longer do or be. He helps me with that. I am also lucky *if you can call it that* to have friends and family that share in my pain. Truth is you probably know someone with fibromyalgia. I am glad that I am not alone – though I wouldn’t wish this on anyone.

I have lost my balance … I fall a lot now. Before I was diagnosed I think the last time I took a nasty spill was when I was a teen-ager. Now, seems like a few times a month I find myself on the ground without reason or cause and a couple of times a year it requires ice packs and x-rays.

Of course trying to explain Fibromyalgia to someone who doesn’t have it in their life full time is like trying to swim through pudding. You get the idea but you never really understand what it feels like until you try it.

Then there are the skeptics who think it is all in my head … they don’t understand or care that I can’t work even a part time job from home because of this crap. It is all in my head because after all, no one has fibromyalgia until YOU have fibromyalgia.

So at least for one day – try to put your skepticism aside, try to understand that not all disabilities are visible, have a little patience, and please be gentle. Because we didn’t ask for this, and if we could be a different way we would in a heartbeat.

Learn more about Fibromyaglia at the National Fibromyalgia Association.

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Back Update

Posted on March 3rd, 2010 by loup.
Categories: Fibromyalgia.

Yesterday I had Radio Frequency Ablation on S1, S2, and S3 nerves. It went well. I love the staff at Duke Pain Clinic – they are the best.

They told me I would hurt for a few days and be sore but after that I should be pain free. Well no more pain from this issue. The fibro is still with me but the disc issues may all but be resolved. The procedure “burned” off the nerves in the offending areas and it will take 6 months to a year for them to grow back. Good news is at least I will have that time pain free and at best the nerves will grow back in a different spot. Tiny bit different but all the difference to me.

Today I hurt – a lot more than usual. It feels like achey bone pain that arthritics know so well. So bad in fact I am having issue sitting and lying on my back. So I am lying on my stomach and taking it easy.

I am hopeful that this works and I have one less issue to deal with.

1 comment.

Cultivate Mindfulness

Posted on November 1st, 2009 by loup.
Categories: Fibromyalgia.

My therapist recommended a book called The Mindful Way through Depression by Jon Kabat-Zinn.
I am half way through it but I also got a few others.

The Mindful Woman by Sue Patton Thoele, Calming Your Anxious Mind by Jeffrey Brantley, and The Mindfulness & Acceptance Workbook for Depression by Kirk D. Strosahl

I never thought I was depressed. My entire life I thought I was just a cynic and that I had this realist view of the world. Turns out my chemical balance was SO off balance that I was / am SEVERELY depressed. After a few weeks on Geodon (a tricyclic) it seems like the shades have been lifted and sunlight can get into the room.

Now I know the fibromyalgia has caused some depression. The idea of not being able to do the things I used to do and love is depressing – and that isn’t going to change. BUT – this is something I think I was born with. A chemical imbalance, genetics, whatever you call it has been there and the fibro just made it worse.

It is a weird feeling for someone who has NOT been a “happy” person to be happy. To smile for no reason and to be enjoying things that I never thought I would or could.

It is interesting and I feel like I should shout from the rooftops (or blog) that depression is a sneaky fucker and even if you don’t think you are depressed it can’t hurt to do some reading. Besides — mindfulness isn’t only for the depressed people. It is a nice way to look at everything. Without shutting out the light and without rose colored glasses — I still am a cynic, and a realist – now I just smile about it.

For your convenience — here are the links to the books — my cousin Twila gets the Amazon credit since Amazon doesn’t allow associates to live in NC.

The Mindful Way through Depression: Freeing Yourself from Chronic Unhappiness

The Mindful Woman: Gentle Practices for Restoring Calm, Finding Balance, and Opening Your Heart

The Mindfulness & Acceptance Workbook for Depression: Using Acceptance & Commitment Therapy to Move Through Depression & Create a Life Worth Living (New Harbinger Self-Help Workbook)

Calming Your Anxious Mind: How Mindfulness & Compassion Can Free You from Anxiety, Fear, & Panic

1 comment.

What a SHOCKER!!

Posted on September 27th, 2009 by loup.
Categories: Fibromyalgia.

Thanks to Sarah for posting this on her FB …

Fibromyalgia Pronounced “Real Disease”

Neurological signs common with fibromyalgia

Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)

By Michelle Rizzo

NEW YORK (Reuters Health) – Fibromyalgia isn’t all in your head, new research suggests.

In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other “neurological” signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It’s a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body
of literature suggesting that the condition is real and also support the possibility that a “neuroanatomical” cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.

All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurological symptoms.

In 27 of 29 neurological categories tested, significantly more neurological symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.

The greatest differences were found for light sensitivity, or “photophobia,” seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more “sensory” problems, motor abnormalities and gait problems.

Within the fibromyalgia group, there were significant correlations between several neurological signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurological test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurological tests.

These observations, Watson told Reuters Health, underscore the need for “careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints.”

Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

This is something I have suspected for years. I fall a lot – I have no balance and very little coordination any more. I have chemical, audio and light sensitivity that can bring me to a full halt with a mere whisper or hint of a scent.

I have tingling in strange places and it travels. It will be in my lower back then the soles of my feet. Headaches, insomnia and unbelievable pain from things like the weight of the sheets on my skin at night. I bruise so easily and frequently I have stopped trying to figure out where they’ve come from.

I now believe that I have had Fibromyalgia all of my life – with minimal flare ups until after my parents death in 2002. I think it was all written off as “all in my head” or something else. Walking short Volksmarch trails could bring me to tears I was in so much pain. By the end of 6 km for a heathy 9 year old should NOT result in so much pain she can barely finish and so sore after she can barely move. Lifelong insomnia and strange tremors, tingles and twitches that before I had just written off because doctors never found anything wrong with me. Great heart, good numbers, “you’re healthy -just get off the couch” … Seriously one quack told me this. While I was running the house, helping LK run his business and working a full time high stress never sit down for a moment job. I guess I could have gotten off the exam table and exercised my legs by putting my size 9 foot in that guy’s ass. But who has that kind of energy with Fibromyalgia

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Too Quiet

Posted on July 28th, 2009 by loup.
Categories: Fibromyalgia.

I have been sort of twisting in the wind lately. A lot of doctors appointments and a lot of pain. Having multiple teeth extracted (the hard way – with a simple local). I am hoping nothing pushes my nerve block back again. I am in desperation here to get the hip pain to back off.

I read a few articles last night and this morning about fibromyalgia and how it basically kills off bits of your brain. They call it “Fibro Fog” and thought it was just from lack of sleep but it really is brain cells dying. Lovely. One doctor said from what he has seen and studied so far it is like mini-alzheimer’s …. something else my therapist and I will be discussing.

Pain levels have been through the roof and I am changing meds so my whole life has been thrown off track.

“I picked a bad week to quick sniffing glue.”

P.S. I still hate Michael Vick — I was hoping some big ass murderer who has a soft spot for animals would have shanked him. No such luck.

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Casting LOUP

Posted on July 17th, 2009 by loup.
Categories: Entertainment, Fibromyalgia, Geekery, RV lifestyle, Site Updates.

Have been thinking about doing a pod cast here lately. I know — that ship has sailed. Everyone has done the podcast thing and the excitement is over. BUT — no one is doing regular podcasting anymore and those who are trying it aren’t doing it on anything I care about. Seems like only professional channels, and people are left.

I am not sure what I would do — bunch all of my ideas and thoughts into one regular show that talks about me and my life (fibro, animals, rving, wolves, tattoos, music etc.) or parse it out to separate casts – one for fibro and health stuff, one about animals, rving etc.

Thoughts?

1 comment.

True Enough

Posted on March 22nd, 2009 by loup.
Categories: Fibromyalgia.

I am learning to slow down and enjoy my own pace.
I am appreciating the people around me more these days.
I can see the effects of gravity on my body, no matter how much I exercise or watch what I eat – aging is upon me.
The lines on my face are indicative of my life story, and I am learning to appreciate them.
I am listening more to my “inner voices”, rather than taking care of everyone else.
As I mature, I seem to be gaining a sense of inner peace.
I am moving away from frantically meeting others’ expectations and developing my own priorities.
My intimate relationships are complicated and changing.
I am wondering whether all of what I am involved in makes sense.

I found this somewhere online – I saved it — I came across it again today. I am trying to live for me and keep away from feeling sorry for myself because of all of the things my health prevents me from doing and look toward the things I can still do.

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Fibromyalgia

Posted on March 4th, 2009 by loup.
Categories: Fibromyalgia.

I was told by my diagnosing doctor, as if it were some reason to jump up and down with joy, that Fibromyalgia was not progressive and it is not fatal.

I think my doctor was full of shit on the first part. If it isn’t progressive why for the last 3 years have my episodes gotten worse and lasted longer than one before?

I think what bothers me the most is that the Arthritis Foundation says that Fibromyalgia is the 2nd most diagnosed form of Arthritis – yet no one really knows about it. Even the specialists don’t know that much.

I feel like I have been plowed over by a Mack truck on a daily basis, and my muscles and brain function are so off kilter it feels like I am swimming in pudding. I don’t “look” sick – but I am. I am disabled. I can not work because while I hurt all of the time enough to keep me from working – it gets worse. There are days I can not get out of bed. There are days I can get out of bed but I can’t remember how to spell my own name for the brain fog. It is sad and it upsets me that I am young and this shit has destroyed who I was.

Fibromyalgia has stolen so much from me. And yet it has given so much to me.

I now know the side effects of every pain med, SSRI, SSNI, and NSAID on the market. I know which foods will send me running to the bathroom and which scents, cleaners and other seemingly harmless products “everyone” uses in daily life will make my day miserable. I learn new and exciting ways to get down stairs or into a pick up truck without sending pain throughout my body – unfortunately I usually look like some crazed goof doing it.

Most of the people I know don’t have a reference of what it is even like – remotely. There are few shining souls that show me compassion and empathy without understanding. And unfortunately there are a few that even have Fibro – so they know first hand. It makes me sad that people I love have to suffer like this. I wouldn’t wish this shit on my worst enemy. Well, maybe a few of them. = )

If you are reading this – I will ask you this. Take a brief moment and look up a little information about Fibromyalgia. If you know someone with Fibro – don’t treat them like outcasts or act like they are just being silly or making anything up. It is real, it hurts and it is terribly hard to function with this crap on a good day much less a bad flare day. Show a little patience.

* http://www.fmaware.org

* http://www.butyoudontlooksick.com a great site – with an even better theory/explanation to those who don’t have fibro .. http://www.butyoudontlooksick.com/the_spoon_theory/

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Exhausted

Posted on November 24th, 2008 by loup.
Categories: Fibromyalgia.

I have an appointment with my doc* (one of them anyhow) today and I am hoping that she puts me back on my meds that help me sleep. Life long insomnia + fibro pain + no meds = one tired LOUPY.

The little sleep I have been getting is full of wicked dreams and night terrors thanks to a side effect of another med I am on (Lyrica) that I don’t believe does me a bit of good.

2 comments.

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