Fibromyalgia for Beginners (begins)

I've finally begun a new webcomic series about my experience with  Fibromyalgia.   I don't know how long it will be but the journey should be instructive -- for me anyway. The archive of all strips (so far) is here.

                       

Click on comic image for enlarged view

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A skilled and experienced sufferer of symptoms

 A recent photograph of Fibrofog

Since the current weather is  unkind towards me all I seem  to be doing  is eating and sleeping. 

I do seize upon the opportunities to do other stuff -- I do get 'windows' -- but my current existence is brutal indeed.

The prevailing weather patterns  may be stable but they seem to be locked into let's-bully-Dave mode.

It is so dry that my lawn is almost dead and to walk on  the paths between my garden beds it's all noisy crunch crunch. Crisp under foot. 

Bushfire weather. 

Which component of this meteorological mix is the one that harms me so,  I don't know. Weather changes may bring on acute attacks of Fibromyalgia symptoms in me but I suspect that like some irritable organism, a flurry of attacks can switch me to chronic mode and my whole system goes bad -- to over load.

It then takes ages to climb back out of the abyss again. 

The good thing is that as a skilled and experienced sufferer of symptoms I can still manage to do stuff  and never fall into a crippling heap.

That's something to be proud of.

I challenge my body when I can by exercising -- so that 'schedule' ( such as it is) is very important to me. It does indeed pay to have a few obsessions. 

For instance, I can hardly walk today but I danced and despite the fact I spent so much of it  flat on my back I managed to do 'things' that I value in order to register  the day as worthwhile.

• I read.
• Cooked an evening meal
• Watered the garden
• Did stuff on the computer
• Danced my dance 

I'd be lost without the computer and the web. Lost. It anchors my thought processes when just like today my concentration is missing in action. Typing out my thoughts -- sharing them and designing or editing  stuff for online publishing --  is all about me.

Even now I'm having a conversation with myself. 

I need  the challenge of composing stuff -- whatever it may be -- for an imagined audience starting with myself. Attempting to communicate something -- anything -- projects me out of the pathology I may be currently stuck with.

It's a very basic human need. 

And very effective. I recommend it. 

Ask yourself

 When you seek better  structure and form in order to explain yourself  with greater clarity  the process of composition  disciplines your own thoughts and facilitates deciding. 

You get to ask yourself: what am I thinking? Unless you try to answer that you won't really know.  From psychotherapy, to diary keeping, to  writing literature or exploring some other medium,  what you think is all about packaging the inside stuff for outside consumption -- even if the audience is just yourself. 

I even walk around with a note book so that I can make lists because making lists -- the business of jotting down items -- helps me to remember and organise what I need/intend to do-- where I'm at. Even if I don't later review the list I'm ahead because I gave my thinking a tangible form outside my head.

I separated thoughts by selecting which ones to jot down. I itemized my thinking.

This is the experience of 27 years of Fibromyalgia speaking. 

You can take my word for it: Fibro Fog is a nasty murk indeed. There have been occasions when I haven't been able to operate an ATM. I'd never be able to drive a car even if I wanted to. I'd be too dangerous on the road. I couldn't trust myself.

So in a sense you really have to work hard on generating a  boutique culture.  You may be able to get by with the same ole same ole but my everyday existence is peppered with these cognitive traps.

And to look at me you'd never guess.

Proper names and numbers -- forget about them. They are more often than not in my too hard basket. People's names. Names of townships. Telephone numbers... I cannot attach them to my memory despite my best efforts.

All too frequent example:  Imagine a new social setting and I get introduced to any number of persons. Maybe I'm to speak to them or teach them something (as happens). But there's hardly a chance I'll remember any of their names. The sounds just don't register. In fact, I immediately start panicking. They expect me to know their names and I won't! So I'm thinking  that before I run a session I gotta get those people to wear stick on name tags as there is no way I can get people to relate to and accept my cognitive impairment. My defensive habit is to not use personal/Christian names for fear that either I  won't know their names or in taking a punt and saying a name I make a mistake. The annoying problem is that I haven't worked out why I remember the names I do. Indeed, if we are introduced and I remember your name consider yourself blessed by cognitive forces unknown.

Obviously I am incapable of learning anything by rote. It doesn't work.

Numbers are a lost cause. The only phone number I know is my own. My ATM pin isn't really a number so much as a spatial layout on a key pad. I don't think I could easily articulate  it as a succession of four numbers.  But online passwords -- because I 'write/type' them down -- no probs. The visual layout of the keyboard guides my recall and confirms the embedding in my brain.

I try to register names by associating them with something else. It's like the way  mnemonics are used and I guess I'm still yearning for a ready system I can use any and every day to handle the proper noun challenge.

Example: I could never recall to memory the name of the Queensland town, "Nambour". It drove me crazy. I'd get to the point of the conversation where I wanted to speak the word "Nambour" and there was nothing there. No name. Blank. I'd have to say, "you know, the town that's on the Pacific Highway half way to the Sunshine Coast."  My solution, crude as it is, was to associate "Nambour" with "Vietnam" because the "Nam" got me half way through the word. It works. But I cannot retool every proper noun I stumble over like that.

Perhaps you are wondering how a condition that is a sort of Arthritis with all these stiffness, fatigue and pain symptoms be also so constraining cognitively.

Go figure.

But the research  doesn't give the sufferers from foggy break down much hope:

Research has shown that sufferers (of Fibro Fog) annually lose more than three times as much "gray matter" brain tissue than healthy, age-matched controls. And some of that loss occurs in areas of the brain that are involved in memory and concentration, says Patrick Wood, MD, a senior medical adviser to the NFA and one of the coauthors of the 2007 study.(link)

So it may get worse? What a bummer.

Believe me: pain and stiffness is easy. Thinking in a fog is hard. Real hard.

Afterward: I leant soon enough that after I 'got' Fibromyalgia  I could no longer learn a musical score. I used to play banjo  but under Fibro Fog rules none of the old tunes or any new ones were possible to play. After 4 or 5 bars the music in my head ran out. However (and this is  a wonderful thing) I discovered only over the last 12 months that I can learn and remember choreography. So dancing is so very important to me, you see. Lesson: what you lose on the swings...you gain on the slides.

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Lose weight. Ask me how.

I come from a long line of breeders

of Toby Jugs.

If it wasn't for a bit of the old growth hormone kicking in, I'd be short and stubby with shoulders for a neck.

Thanks dad.

My family lineage does obesity to a treat when it sets its mind/belly to it.

I was doing OK  for ever so long, then, as my chronic illness became more chronic and middle age descended upon my metabolism, I started laying down the padding. If I take the year I fell ill as a marker, I've put on a kilogram per year extra   for each of the past 25 years.

It's not that I'm sedentary. Twenty five years ago my exercise quotient was rather intense and had been for several years up  until then: swimming, cycling, running and hiking. Despite my tragic malady I maintained a focus on physical exertion mainly to overcome stiffness  and pain but I had to negotiate a new threshold, a new handicap which meant that I could never attain athleticism as a lifestyle.

But the irony is that no matter how much I upped my investment in exercise 

--if you follow this blog you'll know that I do indeed do a lot of physical stuff--

the weight didn't shift at all.I may be ill but I'm more active that most people I know.I box. Lift weights. Walk. Kickbike. We even put in a pool and I would work out in it 10 months each year, wearing a wet suit so I could maintain my exercise regime during Winter.

This is serious stuff and I am always focused and reasonably disciplined in my pursuit despite the fact that I'm so often bedridden or house bound.

But still...I gained weight. 

BMI

It was  only this week when I weighed myself on a public weighing machine that it struck me that I am within reach of my recommended  Body Mass Index. I should attain  that preferred BMI sometime around Christmas this year.

So if I am now  losing weight, what's changed? Do I have a cancer?

At present I am losing on average 1.6 kgms per month. That's why I can project onto a Christmas timetable. I need time to slim down. But I am confident that my physiology will perform to schedule.

How is that happening?  It's so darn simple that it is staggering: I'm eating less carbohydrate. Generally I try to keep my carb intake to around 100-130 grams per day.  This is a sort of Diabetic Diet -- and that's why I'm on it .

I can eat anything just so long as I'm aware how much carbohydrate is loaded into it . In effect that means I cut back on rise, pasta,  cereals , fruits....I try to keep the carb intake per item/serve to under 16-20 grams. If you do your sums, and consider that only so may items are carbohydrate  dense, you can fit a lot of stuff in your mouth for 130 grams per day.

This approach more or less means that I cut out breakfast cereals and don't partake of rise, pasta, potatoes and the like for my evening meal. I still eat bread -- I bake with my own sourdough -- as I eat  one to two slices per day. I still drink beer -- I brew my own with low GI sugar -- without any consequence that I can register. I'm fortunately not a sweet tooth and can live without cake.

...and I'm still losing weight.

I'm not hungry. I eat a lot of wonderful stuff. I partake of the fat universe without guilt.

..and I'm the lighter for it.

My every morning kickbike scoot is a celebration of activity and renewal

I find it so very hard to believe that  almost everyday I mount my scooter/ kickbike and circle the neighborhood for at least  7 kilometres ,

Five  years ago I was using a walking stick to help me get around and  I had taken up using a scooter because it seemed a low tech way to begin to stolid advance to those electric scooters the aged and infirm drive.

I found my mobility was constrained and  thought I  was on a downward spiral.

However, I reviewed my scooter options and thought that if I chose to push, I'd need a broad running board. So my neighbour  built the model below from a cannibalized  BMX bike.

Should have kept this machine when I upgraded As despite its weight it performed very well indeed.

But folks: you don't need a broad running board -- regardless of how much pain or stiffness you wear -- because  you spend so little time perched on the scooter board  due to  of the one leg on/ one leg off kick routine.

Since then, the scooter has been the core element in my exercise and transit routines.

Kickbiking

The Finnish Kickbike is normally promoted as a mean exercise machine. There are some personal trainers who build their training regimes around its use.

This pitch in fact turned me off the kickbike as that wasn't what I was after. This is also why I rejected the kickbike at first look.

But the fact is that a kickbike from  Bruce Cooke's Kickbike Australia is the best  scooter available on the Australian market. It may not now be the only scooter -- but there are very few others and there were even fewer  five years ago.

Scootering: Jogging without weight bearing

Unfortunately the macho image of the kickbike and its intense competition credentials obscures the utility of the kickbike -- and scooters generally -- as rehabilitation and transit tools.

When I first considered scootering,  in my mind the scooter was a lateral jump from jogging. I saw it as  jogging without the weight bearing . So despite my weight -- or your weight -- when you scoot most of the burden is carried by the passive/support leg still on the scooter. You don't bear down on the road and shift all the gravitational forces onto the working leg as you do when you run or walk

In fact, the scooter demands much less of the knee joint than a bicycle peddle and while a peddle rotation may not always demand a lot of push down, there are times when you have to really drive the feet around the cog. You are going to work less because you have gears working for you more.

And scooters don't have to be mounted. If you are stiff and sore, mounting a bicycle is a  challenge . Male cross bar or no, you still have to swing one leg over a hurdle.

With a scooter you step through and on. It's the easiest manoevre on offer.

My daily irony

So here's this machine that each morning I step onto.  I may be constrained by such pain and stiffness and fatigue later that day that I'm in bed. But that morning window snaffled by exploiting this machine, enables me to run a daily exercise program regardless, most days, of my ill health.

I also shop and commute on/with it. 

Each time I ride  the scooter I stretch out my pelvis as the kick requires a broad carry through: throwing the leg forward and down, then back.  I also flex my ankle much more obtusely than I would on a bicycle 

When I plant my foot on the ground the primary forces are aggregated across the metatarsal bones although the tendency is to plant your foot flat on the ground rather than bend it downward like a ballet dancer. It's a full contact thing. You don't advance like a sprinter. It's flat foot jogging, but so light that you definitely don't want or need hi tech running shoes. All you want is a little traction and road grab .

That complete motion really works everything south of the ankle and is ab great way to pump blood hither and yon in those far off extremities. I suspect that for diabetics the flat foot fall may be a nerve ending advantage, say, compared to jogging.

You scoot or kick. Betwixt, you bounce.

Road fox trotting.

Source: Kickscooter Dreams

Update: 18 months later -- Still Kicking!   -- November 28, 2011
I have been scootering for years now -- five or six, maybe seven --  as I can't recall the beginning moment when I pushed rather than peddled.
I love the device/machine/tool/vehicle....love it! Two days ago I scooted through a  park at night. It was hot and humid and my son was atop a small scooter and stepped out ahead of me . And it was thrilling and kickbiking can be like that so often. 
It can be Zen like...
When you engage each stride and push yourself forward it's like a succession of challenges rather than an automation. It's not like peddling at all.
Or running.
It's a total body move that takes off when you're in the zone and the follow through seems just right.
Of course sometimes -- often -- I'm no where near that. Sometimes -- often -- it's hard enough putting one foot forward, let alone the other.
But I manage to more often than not, despite the run of ill health this past year or so, rise each morning  kicking.
A routine at last.
"What's on the agenda today, Dave?"
"Kicking I guess," says I.
The irony is that if your want to read body messages, an early morning kick will tell you how your body will perform for the rest of the day. It's all about somatic pathways and how much energy you can harness as your throw them legs forward and crouch like a tiger then pull yourself up. And some mornings, for me and my condition, I know I'm stifled even if I manage a circuit.
There's no especial pain  but a shallow stiffness that blocks the attempt at athleticism .
But then there is the thrill of just standing on the kickboard upright as you move forward -- propelled by the earlier kicks -- like some stick figure sailing through empty space.
Of course you learn to respect typography on a kickbike...you've got no choice. You've got no gears.

My current base line route -- Conservation Park (map) and the optional longer version (map)-- Swan Lake.

XMRV : I've got that....

Recent research has found xenotropic murine leukemia virus-related virus, or XMRV — a retrovirus in the same family of viruses as the AIDS virus — in nearly 98% of about 300 patients with so-called “chronic fatigue” syndrome. The study was performed and a paper co-authored by 14 scientists at the Whittemore Peterson Institute in Reno, Nevada, the National Cancer Institute, and the Lerner Research Institute (Cleveland Clinic). While the highly credentialed team cautioned that they had not yet proved that XMRV causes the syndrome, the lead researcher, Dr. Mikovits, said she thought the virus would turn out to be the cause of not just chronic fatigue but other illnesses, including being linked to particularly aggressive prostate cancers.

Source: Politics in the Zeroes

Update October

I've been away from the coal face for over three months due to a succession of health issues -- including a dose of Swine flu which floored me. It has been so very hard to claw back to any exercise regime, let alone a routine of daily living.

Now, with a new dose of antibiotics inside me BD, I'm hopeful that I can look forward to recovery mode.

Strength Training Exercise and Fibromyalgia -- My posts to the CrossFit message board

This is the thread and these are the posts I contributed:

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I've had Fibromyalgia for 24 years and I'm a 60 y/o male when most sufferers of the condition are female. Way back then I ran and swam daily and when the condition kicked in I've been on this roller coaster ride that has impacted on my 'fitness' greatly. I'm about one third capacity of where I used to be in terms of doing stuff -- everyday stuff, exertion,etc.

The physiological features of FMS have always, understandably, interested me because there's a ready option in doing less so that you are less stressed by pain and stiffness. I was a RN and also --when my condition kicked in -- trained as a massage therapist when I couldn't work a full time job.

En route I've explored a few 'fitness' and exercise modalities as well movement regimes like Feldenkrais and Tai Chi. I even helped teach Tai Chi for a time -- and I've done walking and everyday pool exercises in line with the presumed wisdom about light exercising to maintain flexibility.

But the reality is -- and I have the intimate knowledge of my own body to prove this -- that light is a mistaken course as is just aerobic.None of these approaches arrest the condition. Inasmuch as they have an impact they slow its course but disuse and stiffness bears down upon the muscular skeletal system nonetheless. So, five years ago I was walking with a cane and thought I'd be in an electric mobile thing in a few years.

So here's what I did, because i think it's an interesting story.

#1 I switched from a walking cane to trekking poles -- either singly or in pairs and the shift pulled me upright as my shoulders rose to the higher grasp. I no longer walk with any aids.
#2 Since I had difficulty mounting a bicycle, I built myself a scooter -- a dog scooter -- and pushed that. I know use a (Norwegian style)kickbike. to get around.
#3 Two years back I started at a boxing gym with a weekly trainer. It has taken me the best part of 20 months to register physical gains as I slowly built up my exercise capacity.The literature in regard to FMS is dead wrong in regard to pain management and the like -- weight training in the context of boxing exercise has been the best thing I've ever done to deal with my condition.

It is because I've really taken to kettlebells that I found my way to CrossFit -- as I did a search, "Fibromylagia" + "Kettlebells" and found this thread.. After watching the videos I'm gonna find my own way into CrossFittery.

The kettebells were very important for me because they broke through a sort of amour that had constrained my lower back and core. Granted a light workout with the bells meant that I spent a good part of the next 3 days in bed -- but as I kept at it, moving the weight up slowly and restraining the vigor of my workout -- I'm getting to a level of confidence with fewer side effects.

So what's the drill with Fibromyalgia?

Lesson 1: Weights. Push the envelope slowly. Don't over do it or the client won't come back or won't be able to. I cannot as yet comment on gymnastics although I've taught myself to skip.
Lesson 2: The FMS client has to set the parameters. Not you. There's no room for a Boot Camp approach. Its' all about , I guess, movement awareness and confidence with the routines an you gain strength.. (And the knowledge -- like this -- that others have also done it). Group sessions are no good-- it has to be one on one.
Lesson 3: Pain in FMS is relieved and restrained by exercise that pushes the body rather than simply moving it. My first break through was to relieve upper body pain through the poles and then by weight lifting and boxing. Lower body pain only began to lessen by using the kettlebells. Sit ups were a waste of time.
Lesson 4: FMS is also a sleep disturbance complicated by the depth of restful sleep you get. An exercise regime that strains the body a bit (but not too much) is the very best hypnotic(?2-4 hours before bed). I'm trying to establish an evening routine of workouts so I can harvest it effect on my sleep pattern. The problem is I'm more tired, stiffer and cumbersome as the day wears on. But that's another consideration -- designing an at home routine that promotes good rest.I can come home from a gym session and sleep for up to three hours -- so there's no ready solution here.

I guess the main thing to note is that I'm having my best Summer in years -- and Summer here in sub tropical Brisbane, Australia -- is always my worse time.Its' the strength training routine I'm no exploring and, inasmuch as I understand the CrossFit philosophy I think there are a few aspects there that are very relevant to where I need to go but without over doing it as bed is a bugger of a place to spend your life.

Furthermore, while I'll never be free of this stinking dog -- as weather changes set me off and I always will get relapses big time -- the heavy training I am now doing enables me to bounce back quicker so that I'm less incapacitated. when I do have relapses. Even "having relapses" is nice change as I was chronically ill all the time for years so there seemed hardly much variation!

In real time, my first achievement was to be able to move my session time up from 10 minutes to 30. Now I do 40 intense minutes at home most days. But some days I tun up and am just happy that I can make it though my half hour so I just gotta do it light. (I say "light" and try to distract my instructor by prattling on and sharing anecdotes. Some days I literally cannot walk home the one mile from the gym.)

But that's OK. In FMS: no pain/no gain!

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Inflammation would be good in FMS if it could be located.

In comparison your everyday arthritic has it good cause they 've got identifiable symptoms. The reserve option is usually pain killers -- not that they are very effective -- and Tricyclics which impact on sleep patterns and reduce pain and stiffness.

I don't want to take up this thread with treatment options, but I point out that with Tricyclics -- the standard treatment -- there's usually an associated weight gain and that impacts on an exercise regime. Whether exercise can replace the use of Tricyclics is something I'm keen to investigate in real time exertion.

But for instance I can crawl to the gym (with stiffness and pain and mental fog)for my session and go though the most limited of workouts and come away with greatly reduced pain levels. So long as I tick the main "circuit" boxes -- even in light pencil, I'm ahead!

To give you and idea : I live near an urban train line and often use it to travel across town. I may have an appointment and leave my house for the 6 minute walk to the station. Only when I'm mobile does my underlying condition that day begin to register. (I think that's important as exercise tells you where you at in the way that no exercise will not)So when I get to the station I have to walk up this 30 degree ramp -- and every so often -- far too often -- I have to turn around and go back home because I cannot ascend the ramp. If I do I'm dragging on the hand rail to do so.

There's two factors here: One is whether I can walk up the incline -- and the other is once I get where I'm going,how do I manage to drag my body back home again?

But the very next day, or maybe even later that very day -- I can do a 30 minute workout or push my kickbike 5 kilometers.

So we aren't talking about constancy. This is a mercurial condition harnessed I think by playing around with the pain and exertion threshold. And, if I kick in some adrenalin -- the pain is overridden such that if I'm crossing a street in stiffness mode and a big semi trailer bears down on me I can run across to save my skin when I began the crossing shuffling. I may not be at my fastest, but I have leeway in that context to do more than I thought I could. Thats' always the case.

So I think you can always exercise regardless how you feel --so long as you pitch is ts demands on your physiology.

Exercise is a war with your body's seeming preference.

Another feature of exercise worth while noting is that it has proven a boon for concentration which goes into free fall with FMS. Memory and focus do suffer with FMS and --as the contribution here from a woman with FMS indicates re typoes(as my own surely) -- a sort of poor typing discipline, aphasia and dyslexia kick in. In that regard I've found the discipline of gym exercise -- the counting and the numbers/calls -- the noting of the clock -- very useful in retaining my mind to work with more focus.

For instance it took me a long time to master the number/punch scatter that occurs with focus mitts. It took me 12 months to be on the right punch for the call for a whole workout. Now I hardly lose it as I've retrained my head to lock into what I'm doing.

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Well a diagnose can also offer its own burdens because that by default can be a sentence if you let it.

I just read Katrina's excellent paper and note the scattered nature of the conclusions from research into exercise programs.But what I wrote before is true: it has taken me close to 2 years to register observable,albeit subjective, changes in my FMS. That comes after many years of experimentation with different modalities and an extended period during which my condition was deteriorating.

There is a difference between improvement in symptoms and symptoms not getting worse and the literature doesn't recognise that divide as the latter is hardly a research topic registered in standard hypotheses. Exercise is a given -- an absolute imperative -- but what form of exercise is best suited to also encourage symptom moderation is the main question.

I guess my answer, for now, isn't so much low intensity at all (eg: Tai Chi, a water aerobics, etc)but reasonably high intensity workouts so long as it is of short duration (eg: approx 30 minutes ) -- with consideration that the intensity is varied according to symptoms presenting on the day.It is very important for me to attend my weekly session with my trainer, regardless of how I feel, as the routine has to rule. And outside that time I need to follow a regime that includes at least two other workouts in any one week (although I usually do more in any seven day period -- at least that's always the plan).

I've done daily water workouts(we have a pool here which I used even in winter when I'd wear a wetsuit), tai chi, walking, stretches, cycling, sauna and massage -- and my conclusion thus far is that I'm now on a bit of a winner. I haven't got my head around the ways and means of CrossFit so I cannot say what application that philosophy may have to FMS -- but my initial reaction is supportive of its utility.

I also have an interest in getting off Tricylics for pain or reducing my dosage so that I can be free of the side effects but these meds do reduce pain significantly (and, of course, they ameliorate symptoms of depression).

But I do think there is a case to be made for drafting a trainers charter for FMS clients as it's clear that many professionals are ignorant of the nature of the condition and have not one iota of a comprehension of how to relate to it. At my gym, with another trainer, I would have given up long ago because I would have been macho overworked. My complication is that I'm highly motivated and don't make a habit of saying I have Fibomyalgia, so I'm not about being passive or playing at victim hood either.

So what's my conclusion? At least anecdotally, from my POV.

FMS sufferers can do 30 minute workout sessions if the program is graduated and pitched not so much on a week to week rising scale of attainments but how the symptoms present on the day. Of course more challenging exercises has to be built into the overall graph of the program --if only for a sense of accomplishment -- but the impact of the program may not be felt for many months.

I don't think what exercises are performed is so important but consideration should be given to ameliorating pain in specific regions of the body.I am always a touch confused with FMS as to its record of impact and pain in weight bearing as against other muscle groups -- and I'm thinking more about that in regard to the use of kettlebells which are devices that seem to tick a lot of boxes. Boxing was excellent for ameliorating my upper body and upper arm pain and I had been using a leg press machine for my lower body. But kettlebells were more effective in dealing with lower back and thigh ouch points. This may have something to do with why chiropractors recommend them .

I should also point out that there is a safety issue with FMS in any gym as the nasty 'fibro fog' can greatly undermine concentration even, at times, independent of muscular pain and stiffness symptoms.So treat such clients like children in a gym situation if required.That means instructions may have to be repeated several times so that the procedure is adhered to in complete detail.

In summary I guess I have to revert to and recommend the standard gym mantra: no pain/no gain -- so long is due consideration is given to variability.For instance I worked out this morning by myself at the gym with skipping, leg presses, kettlebells and a bit of very light clean and jerk over 30 minutes. I felt fine and walked another 3 kilometres afterwards to grocery shop in 30C heat (86F) . .. But tonight I could hardly walk once the weather change kicked in and I had to drag myself across town and transit by hobbling.

(But you see I still hobbled foward. That's the point.)

Tomorrow, I expect to be OK for another (light) morning session because I know that the catalyst for the stiffness wasn't the workout....But that's the drill. What the exercise gives me is "bounce" -- I can recover much quicker from such relapses which other times used to last days or even weeks.

That's the core treasure that exercise like this offers me -- that and the amelioration of some pain symptoms more generally day to day.And yes, body/movement awareness -- that's crucial.

Anyway I'll leave that for my contribution and maybe check back in months with a similar homily....By then I should be more familiar with CrossFit ways and means.

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Originally Posted by Stephen R. Lampl Meg, For right now, though, she continues to have issues with any "standard" weight/resistance exercise - - she is normally bed-ridden for two or three days afterwards.

Yeah, well that's the case unfortunately but the main issue is that you aint gonna die. I think too much has been written about the dangers of physical exertion in FMS.

While stress is very real and potent and exercise is indeed very stressful, it is stress with a return. I spent too long playing up to those notions, too long being protective and careful that I may 'overdo it' while pandering to 'range of motion' regimes premised on aerobic notions.

I've just spent the last three days in and out of bed -- and most of today asleep -- primarily because of weather changes -- but I know that I will recover and I will bounce back much quicker because I've toned up the old bod with regular workouts.

Without it there's this down time envelope that may persist for awhile as though my body has lost its memory of how to navigate itself back to normal mode. Thats' the trick: with FMS in free fall you forget what 'well' is like and accept passively what the illness throws at you so you try to negotiate comfort by its terms: prostrate rather than upright.

Easy. But the very worse response.

I've spent two or three days stiff, sore and often asleep and bedridden after a workout too. Every time I up my exertion level is it may happen but the trick is to negotiate the curve nonetheless -- working a little bit longer or a little bit harder as the weeks go by: gambling with your body's response.

This may seem totally ridiculous as though it's only invested true grit -- but if you do your homework and chart your recovery time, you bounce out of relapses faster . You'll note a steady gain in controlling your symptoms: less pain, fewer analgesic medications, more vitality, etc. The real trick isn't the sense of exertion but the somatic awareness.

It's real hard work to get a sense of that.

Yesterday morning I worked out at the gym on kettlebells and skipped; did a little boxing, tried to do a few pull ups, and was a bit stiff in the afternoon and had to sleep as a weather change swept over the town.

All my chores and my routine were put on hold.(Eg: I write journalism and none got written so I missed my deadline)

This morning I walked to the railway station to attend a meeting but couldn't climb the ramp and had to come home. I went straight back to bed and then slept to early afternoon..

Nonetheless I walked the dogs for 40 minutes this afternoon had a meal and went back to bed. So I went out between naps.

I have a session with my trainer early tomorrow morning and I'm hoping to be able to make it and last the full 30 minutes.I almost postponed it and thought: let's risk it -- let's see how I pull up when I awake.

Obviously a big component of this is cognitive -- by working out I get to sit in the driver's seat and feel a bit like 'can do'.It puts me in a sort of co-control.

That's because, in my estimation, surviving FMS is an exercise in opportunism -- you do the best with what you've got at any one moment.

It's a series of levels I guess which you engineer. My base level is cooking an evening meal. If I do nothing else in the day at least I should be able to do that. Sometimes I can't manage that, maybe a few times each year. Another level is walking the dogs. A third is working out for 20-30 mins or pushing my kickbike..

Then there are other levels -- with the advantage of using a gym being a regular reason to get out of the house. (I try to get to the gym at least 3 times per week) I actually think I have pandered too much to 'working from home' . And having a session with my trainer is a major event for me every week -- it's like going to church. (But the day -- or for the 2 days after -- I never plan on achieving much as my sessions with the trainer are harder than the ones where I push myself)

So I have these levels and some accompanying aims. The levels give me a meter of where I'm at and the aims push me along.

So I had to increase my session times from 8 minutes to 30; skip rope from 20 skips to maybe a few hundred now; box work out on the bag longer than 30 seconds to a succession of 2 minute rounds,etc. There is nothing special about such gradations except that I'm occasionally physically and mentally gah gah. Nonetheless I can expect to increase my weight and resistance regime and as I wrote above -- I am saying I do now register qualitative results after 18 months to 2 years of this!

I've never found a direct result between 'x' amount of exercising and illness moderation immediate after or within a set period of time. I don't have that luxury so it is a mistake to expect there is a direct immediate relationship between the two. And the research I've seen about exercise & FMS tends to fall into that trap. The research period is of such short duration that there is likely to be a placebo effect in play as much as physiological gain being registered.

I cannot then say -- well go for it! CrossFit for the Fibomyalgics -- because I don't understand CrossFit much. I think the exertion level may be too intense from what I've seen on the videos. But the perspective, the exercises themselves, the postural correction and the challenges of the main routines should be within my own reach overtime time.

[For instance I'd like to be able to do one pull up sometime over the next year...]

I like the CF approach primarily because it starts with the squat and I've learnt that the squat, for me, is a powerful means for me to overcome pain -- just as weight training (and boxing)has impacted on pain and stiffness in my limbs.

But since I've had this beast for 24 years now....I have its measure a bit. And I guess the main thing is to do what someone suggested here and ignore it. Transcend the illness and instead deal with the range of symptoms as they occur. So when I come to my session with my trainer -- nothing is set in stone. If I have a few symptoms that day we work around them. And in a normal gym what you lose on the swings you can gain on the slides....

{That also suggests that any trainer working with someone with FMS should only address the symptoms not the illness as though its somehow pre-ordained rehab. I haven't bothered my trainer with a diagnosis I just say 'arthritic' and "it varies" and we trim the work out to suit the day. No sweat. }

I've also learnt that working out has to be niche driven -- that is by being opportunistic. If I was asleep for a good part of today I seized the window of walking the dogs just as if I cannot work out at 10am and may be able to do so at 7pm.

Gout!

As if my life wasn't painful enough! I'm pretty sure that I suffer for chronic gout My medical picture is confusing but does date back 7 years to my first attack and I guess a lot of my immobility has been engineered by this monster(aptly represented by James Gillroy in the above image).

I won't bore you with a lecture on the disease except to note this definition:

Gout (also called metabolic arthritis) is a disease due to a congenital disorder of uric acid metabolism. In this condition, monosodium urate or uric acid crystals are deposited on the articular cartilage of joints, tendons and surrounding tissues due to elevated concentrations of uric acid in the blood stream. This provokes an inflammatory reaction of these tissues. These deposits often increase in size and burst through the skin to form sinuses discharging a chalky white material.

There's another feature not mentioned: pain! Pain! Pain! Pain!

So I have this handicap that impinges on my daily fare and merges so terribly with my long time fibromyalgia.

There are ways to treat gout and these are rich and rare: cherries, medications, water intake, celery, pineapples, no anchovies..lay off the kidneys. Eat nuts...and chocolate! No grog.

And onset can be caused by a host of factors: sudden weight change, surgery, stress, over indulgence in high amine foods.

That's easy. The hard part is surviving and dealing with an attack.

So you wanna see my big toes?

...No you don't!

I can also feel the uric acid build up in my two typing fingers on each hand....