Back to the grind

Monday will be the first day back to full time hours at work.  It is still morbidly funny that a suicide attempt gets you a three month respite but little else.  How much more clear do I need to be to doctors that I need some serious pain relief or a pain management program?  So it is a little surreal to be back to work full time, with my employer expecting me to not miss any work again and my doctors doing nothing more to assist me.  Which has naturally caused me to revert to my former mindset of masking the pain as best as possible, get through the day in whatever way I can and just keep pushing through the pain hoping this time it will not break me.  I seem to be handling the pain well... it is just a case of it is worse being at work, and yes, I have to take more medication to get through the day, and no, I can't exersize while working.  I am just doing the best I can given the circumstances.  I find getting back into the groove of work is a nice distraction, but some days it is simply torture.  My boss keeps asking me if I think I can handle it and that is useless because the choice was taken from me so I say I can, and I will, until I can't.  It is not the short term that is a problem... it is how I will feel about the situation six months from now or a year from now.  Right now I seem to be doing all right... unless I think about it.  Thinking about chronic pain is a slippery slope into dark thoughts.  Best not to think.  So when not at work I am distracting myself with books and creative writing.

The Fog, the Haze and Daze

I was chatting with a customer last week about Fibromyalgia... not a common topic for me to discuss but it came up because his daughter failed the disability questionnaire  as I always do and so I threw the fact out there.  I know how annoying it is to not get coverage because of a pre-existing disability and in my case it is rather funny because it is the migraines that make me miss work, not the fibro.  He told me a co-worker has FMS and that he had been on strong pain killers for year but was tired to the haze it caused in his thinking and memory so he took some time off to ween off them.  When I thought about it afterwards I had to wonder why they gave that fellow opiates for FMS, as they had also given my father.  I had never been offered any pain control.  Was it because of the field they worked in?  Or because they could communicate how much pain they were in better than I can?  I simply don't know but I don't think those of us with FMS should be put on pain killers.  Pain is in the brain not the flesh, more so with FMS... so treatments like Lyrica combined with things like massage therapy seem more prudent.

Then I thought about that man and the fact the drug haze was problematic for him.  Those of us with fibro have memory problems, concentration problems and the fibro fog which is like a thick, trance-like state where nothing gets in.  We have to find interesting and creative ways just to get around that in the work place.  I have troubles with it quite a lot, especially with the migraines mixed in.  It makes it such that I am better at looking at the big picture but I miss all the details... which leads to a lot of little errors.  I often feel like I am losing time because I cannot remember anything very well and can't remember how long ago something happened, if I remember it happening at all.  Pain makes it hard to get things processed into the long term memory because we are focused on ignoring the pain while trying to do other tasks, so a lot of the details are also ignored.

Naturally this made me wonder about all the medications I am on... so very many of all different types and also quite a few days with painkillers (tramacet is my rescue med for migraines).  And if I took all those drugs away, assuming this did not cause me to revert to daily migraines, would my mind seem more clear?  Would the haze lift?  I know days without migraines are awesome in their clarity, although far too rare, and I imagine if I did not get migraines that would me my natural state.  But maybe those drugs make it worse.  The antidepressant I am taking to help me sleep makes me feel extremely drugged at night and groggy in the morning, so that one does most definitely contribute to the daze.  It is amazing what side effects and compromises we make to lessen our pain.  The idea is not to take something very strong to obliterate the pain but make it difficult to function... it is to find something that lessens the pain so that you can function.  I wonder what it would be like to not be on any of these meds.  I know the pain would be unbearable, as it was before I was on any preventative, but still, what happened to the days when I was only on one preventative instead of three?

Space Age Pod Shows Positive Benefits for Relieving Symptoms of Fibromyalgia

The CVAC pod has been used by athletes for years to naturally enhance their stamina and endurance, and now Complete Clinics has been seeing positive benefits in pain relief for its fibromyalgia patients.

At Complete Clinics, those who have used the CVAC report a number of benefits including;

•Improved stamina
•Increased feeling of alertness and mental acuity
•Reduced inflammation, swelling, and pain
•Improved recovery after exertion
•Improved sleep (decreased wake-ups)


"The night after my first CVAC session I was able to sleep a full eight hours and it was the most sound sleep I have had in two years. After continued use, I was astonished to see how active I was becoming. This machine is incredible," said Lori Perez, a Complete Clinics' fibromyalgia patient.

Karen Herbst Ph.D, M.D, board certified in internal medicine and endocrinology and an expert in fat related disorders, believes that fibromyalgia is similar to a rare condition adipose delorosa ("AD") in terms of the degree of pain experienced as well as a number of symptoms, including fatigue, cognitive changes, sleep disturbances, and shortness of breath. Dr. Herbst conducted a small study with 10 people with AD, four men and six women, who completed an average of 9.4+/-0.5 CVAC process sessions and stated:

"The CVAC improved pain and mental functioning significantly in a population with widespread pain and symptoms similar to that of fibromyalgia," said Dr. Herbst, "Although further randomized controlled trials are needed, the CVAC is likely a useful treatment for conditions of chronic pain."

What extactly is this CVAC?

The CVAC pod simulates rapid changes in altitude to help improve overall body functioning. During the CVAC individuals will sit comfortably in a large "egg-shaped" capsule and will be surrounded by precisely composed rhythmic changes in pressure, temperature and density of air. The pressure changes hundreds of times a session, simulating altitudes up to 3200 meters (nearly two miles). The CVAC is not currently FDA approved for any medical indication, and benefits to fibromyalgia, weight loss, or any other types of patients at Complete Clinics, are anecdotal at this point.


Read Full Article


Hmmm... I wonder how expensive it is and if I can install one in my house.

Mindfulness therapy may not be effective for managing fibromyalgia

Mindfulness therapy may not be effective for managing fibromyalgia



In a recent study, fibromyalgia patients using mindfulness-based stress reduction, such as practising yoga, showed no significant improvements in either physical symptoms or emotional well-being.
A program aimed at easing stress with meditation and yoga may not be much help for people with the chronic-pain condition fibromyalgia, a recent study suggests.
The study, published in the journal Pain, looked at the effects of so-called mindfulness-based stress reduction -- a technique developed by researchers at the University of Massachusetts in 1979 that combines mindfulness meditation and gentle yoga
For the new study, researchers led by Dr. Stefan Schmidt, of the University Medical Center in Freiburg, Germany, tested the program's effects among 177 women with fibromyalgia.
They found that women assigned to the mindfulness program showed no greater gains in health-related quality of life than those assigned to a waiting list for treatment.


Read more: http://www.nationalpost.com/life/chroniccare/Mindfulness+therapy+effective+managing+fibromyalgia/4041961/story.html#ixzz1BHHtryyc


Yes, I think we need a little more than that... like some actual pain relief might help. Nevertheless reduction of stress and being mindful of ones emotional state can't do any harm and may have some benifit.

Winter wonderland


This is the amount of snow we have accumulated prior to the last week of additional snow.  We have had temperatures around -24 C to +5 C.  As you all know quick changes in temperature means more pain.  It triggers FMS pain and it triggers migraines.  I really loath winter.  Not only the additional pain from the storms but also the extreme cold which aggravates my asthma and really increases the pain of an existing migraine.  Just walking outside with the wind screaming and the temperatures at that -25 mark makes it feel like someone is repeatedly stabbing me in the brain while at the same time squeezing it in a vice.

Such as it is

I have successfully completed two full weeks of work, possibly a little more given I don't quite remember how long it has been and there were also those two weeks of three days a week only. Quite the accomplishment really. At least I am sure my boss thinks so, but really it is just that after having a break and a mental snap I feel ready to combat once again. At least mentally ready. Emotionally volatile but ready nevertheless. I would like to say these days went smoothly, but come on, honestly they were painful. Some extremely so. But there were some milder days which was nice. One day at a time seems to be working for me, as long as I do not think about the future at all and just aim for the weekend.

There was one day my car got stuck in the snow of our parking lot, which happens a lot. I had a consistently moderately painful migraine all day. It got sharper when I went outside, as it often does in the cruel cold weather. But I was on my way home and just wanted to get there. But I was stuck and trying to back the car out I had to do the over the shoulder checks quite a bit so that in the case the car had moved I would not plow into anyone. That there, the moving on the neck, caused the most extreme pain that kicked that migraine into uber severe mode. Nasty. Then I had to call my man to get me out and all I wanted to do was curl up into a little ball and hide from the pain.

Getting to work is an issue. Some of the drugs I am taking cause some severe morning grogginess. Makes me all zombie like. Sometimes I accidentally sleep in by hitting the snooze button on autopilot. That makes it all that much harder to have the will to get up and go when combined with that I have a morning migraine. But so far by grit and determination I have made it to work and once there I merely have to survive.

Migraines though are not so good for thinking I find. It is amazing how many mistakes I make and then have to correct. There is the pressure to make no mistakes on audit as well, which sucks because I know for a fact I am making them and that means I am not likely catching them all.

I am glad I am feeling a little better, most of the time. Because I know I have no power, my doctors have all the power and they don't always use it in my best interests. I am getting tired of trying really... clearly they must think I am able to cope so somehow I must figger out how. Coping one day is not the problem it is coping one month, one year, one decade that is the problem. It is continuing to go to work everyday no matter what. That is the war.

Here we go again

Turns out the people who handle the short term leave for our workplace totally messed up my graduated return to work. It was supposed to be four weeks ending in five day weeks at six hour days until I am cleared to return to full-time by my neuro. Which means I was underpayed this pay day and that will have to be corrected somehow. The lady did not inform my boss or me of the correction. Not surprising. So I am on six hour days for a bit anyway, which will be nice.

It has been difficult to return to work, although I like keeping busy. The pain is what it is. Not like it can be avoided. It must simply be endured. I have to figure out how to do that again, without the emotional price of it being too high. It is tiring though. The fatal flaw in my exercise plan is that I have no energy after work to do so and even if I did by then my migraine is full throttle. Once again it is work or exercise and not together. Well fine. Be that way, brain. As for working in pain it is slightly better in that I have had some migraine free days, and I totally live to have that blessed relief, and some days with milder migraines that respond well to treatment. Just not so much to really be effective pain management wise. What is more effective is not dwelling on the future, at all, and just make it through the moment. It is when I think and ponder on the very extensive future that the burden of pain seems horrific.

I did go through an emotional trauma though and that has left me quite bruised. So sometimes I think I am coping just as well as ever and am in a fine mood, then some slight thought, remark, memory or something triggers this mind blowing emotions. It is like a switch just goes. And I simply react first, then think later. Or worse follow the faulty logic too far and feel worse. I think it is fairly normal. To think I would have survived the whole situation unscathed would be unreasonable. It is unpredictable and intense, but feeling something is better than nothing at all. Best to work through it.

Migraine Auras: Unpleasant or Beautiful? (Migraine #2)

This is a more detailed explination of migraine auras... including the mention of Alice in Wonderland Syndrome! Which is so crazy fun.

Video 1. Visual aura of migraine

Yeah, pretty close to the usually right before migraine visual aura... although sometimes it is all over the visual field.

double jointed wobble wobble

Being hypermobile is cool... you can totally freak people out when you bend your elbows backwards.  So flexibility is not an issue for me.  Sometimes I am so flexible my hip pops right out and I fall.  That is a slight issue.  I have sprained my ankles at least fifty times, but twice I should have broken them but my foot just folded instead.  So there is a Huge klutz factor here.  The important thing for hypermobility is to strengthen the tendons and ligaments so that they hold the joints in place, thus preventing things like your hip popping out or accidentally running into walls all the time like your a ball in a pinball machine.  I was informed of this when I was quite young and managed to to things like gymnastics and figure skating for a few years before that pesky fibromyalgia pain made everything hurt so dang much.  I did try to do some repetitive small weight lifting to strengthen my joints when I was in my early twenties, prior to my official FMS diagnosis, but dang, weight lifting is a big FMS no-no... unless you like to be crippled by pain.

So I am wobbly and shuffle a lot.  Totally have no balance.  In order to attempt to strengthen my muscles I am trying out the yoga (on the Wii fit, since no way in hell I would be able to do even a half hour class).  There is this one pose called the chair, that you stand on your tippy toes with your arms out in front and then squat down making the world most wobbly chair... my knees practically knock together on that one, while the Wii mocks me by telling me I am unstable.  There is another pose, the tree I think, where you stand on one foot and tuck the other foot up high on your thigh facing outward... which is literally impossible to do, unless the point is to mimic a tree falling in the forest.  Yet another pose requires standing on one foot and tucking the other leg up and holding it with both hands, pulling the knee close and releasing a few times... and I can do this, but not for long, since it is rather hard to balance on one leg to begin with let alone holding me knee up like that... I find I have to stand on the side of my foot edge, then go flat again in order to have enough stability.  Anyway, I rock the poses that require both feet on the ground!

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...