I’ve tried to avoid talking about how my body feels. I cried much of Sunday and woke up Monday with an owie head. Then Monday I cooked and cleaned in preparation for guests…plus had several other visitors during the day. I was tired from morning to night. Last night I had massive night sweats. Tuesday morning the upstairs dogs barked until I went nuts.
Normally, I would not drive to town when it’s raining, I don’t feel well and I don’t have much money or a pressing need. I drove today just to get away from here. As usual, people rushed to steady me, to help me do things and to open doors. In one sense, that is very sweet. In another it just makes me feel even older and more decrepit.
The whole trip from beginning to end was less than 2 hours. By the time I got in my van to come home from town, my arms and legs were tremoring like crazy. For the last month or so I have been having more frequent and sometimes debilitating fasiculations and even bigger muscle twitches. The muscles firing over and over wear me out! It’s as if I were doing real physical labor when I twitch so much.
I hate it when my toes curl, the thighs cramp and my knees won’t flatten from the twitches, swolleness and cramps. Or my “favorite”…when my hands spasm and I can’t flatten my hand out. Super owies!
My legs have been swelling. Tonight my right leg/ankle is so swollen that my very loose sweat pants are way too tight there. Incredible! The leg is getting redder and hotter by the hour I used to get blood clots and cellulitis, so I need to pay particular attention.
Earlier I had violent chills. Now I am burning up. Chronic diseases are so much fun….NOT!
I’m not going to lie, I’m nervous. Life with lupus is not for sissy’s. Life with lupus while over the road trucking is going to be a whole new experience. I’ve been dreaming of this new chapter in my life. Dave and I have been planning. He paid the dues for both of us by struggling as a team driver at a “trucking school” truck company. These companies flood the roads with new drivers working off their school fee’s. It’s a rough way to break into trucking.
Lupus brings with it certain “special” needs to contend with. Things like bladders and bowels that do not work right. I’m scared, really! This is embarrassing to write but I am committed to honesty here, we are going to put a small porta-potty on the rig in case of emergency. I am one blessed woman to have found such an understanding husband. OK this is gross and graphic but will also pack a barf bucket. With lupus you are more susceptible to food poison. A stomach flu can lead to projectile vomiting as your head spins around like on the Exorcist while the other end is also busy.
Covering up is mandatory. I’ve been buying sun protective clothing items on ebay. I hate wearing mens clothes but if I can get a new UV protective shirt for $20 instead of $80 I have to buy it. Head coverings are vital, I have ugly hats, can’t afford the pricey UV hats. I do wear long scarves pulling them up over my head when in the sun or vehicles. I look like a Muslim woman, most people gawk at first but scarves work better for me than hats anyway. Scarves allow air to flow around the head.
Lupies have to be very careful not to eat or use anything that may cause an allergic reaction. Once an allergic reaction begins, it often will go from bad to worse even after you have removed the allergen. Recently I ran out of my natural shampoo and used Garnier Nutrise. After 2 applications my scalp broke out in a lupus rash. Right now it is blistered and spread to the entire back of my scalp. So travelling to new places and experiencing new things will have a dark side to avoid.
There’s no such thing as “packing light” with lupus. Besides the special clothes there is usually special food. All lupies should be on large quantities of fresh organic produce. Lupies need extra rest. We can’t just work through it or push ourselves. Oh well yes we can, but we will pay a dear price for it later with extra miserable pain or a potentially life threatening exacerbation.
The risks of infection are going to be greater since I will come into contact with hundreds of peoples germs at truck stops. Dave takes extra precautions for me. He uses care in public restrooms and germicide.
The secret to my happiness and joy are; pain management, my faith, and the fact that I do not live in fear. We all will die, it is a fact! Some die sooner than others but we can not live in fear lupus or not.
So live! Dream! There are no failures only the chance to find another way to live your passions.
I’ve got a bunch of body pain today. What??? The most likely candidate is egg since I’ve just reintroduced them and ate three yesterday. That and the weather is about to change…that usually affects the FM. But still…geeze. I’ve been good sticking to the diet but there must be something that’s getting me because I’m having body pain. It’s still not as bad as before I started The Experiment but not as good as the first few weeks.
Yesterday my sister in law (hi Viki!) pointed out that if I’m sensitive to corn then I have to watch it because there’s corn in a gazillon things. A quick spin through google confirms this. Not only corn syrup but corn derivitives are everywhere and called by every name but “corn”.
Great.
I also found out yesterday that my biological father and my paternal uncle both have wheat sensitivity and the uncle has been gluten free for a couple of years. I guess when he eats any gluten he breaks out in a terrible rash. Sounds very celiac diseasey to me. My paternal aunt (the messenger) tries not to eat gluten herself.
Very interesting, don’t you think?
I’m trying to eat clean today. Had a hemp protein smoothie for breakfast with my one coffee and some herb tea. Kevin is making his nummy no-tomato chili for the rest of the day. For dinner last night it was quinoa and diced sweet potatoes fried up in a skillet with a little tahini and oil.
It was very mediocre.
So no eggs today, no processed foods, just chili and some fruit. And water. I should really be drinking more water. Wish me luck!
DAY 28: Pay attention to my little accomplishments
“A lot of stroke survivors complain that they are no longer recovering. I often wonder if the real problem is that no one is paying attention to the little accomplishments that are being made. If the boundary between what you can do and what you cannot do is not clearly defined then you don’t know what to try next. Recovery can be derailed by hopelessness..” A Stroke Of Insight by Jill Bolte Taylor
No question it is a challenge being able to notice progress when one is chronically ill. The problem is that healing is not linear so that I can’t always say, “I started at this point where I could not do (list the activities) and now I can do the following (activities). Certainly, during the first three years, when I was mainly bedridden, those linear benchmarks were appropriate. However, since then, progress has been difficult to describe. I could tell you how I went shopping for a couple of hours which seems like a significant indicator of progress, but then I might tell you the next day, I had regressed and couldn’t leave the house again for another ten days. It is this constant instability, this rocking back and forth from progress to regression that makes it difficult to determine whether I am making headway.
Over the years I have often used Christmas and summer as my benchmarks comparing how I am doing. And there have been some significant improvements since at times my activity levels have increased. Then last spring I could feel my body making another significant regression and I didn’t know how to stop it. I tried to ignore the symptoms, but by summer, I could feel so much of the strength that I had begun developing begin to disappear, and by fall, I was definitely pretending to be more well than what I was. By November, the pretence was over as I could no longer leave the house. I felt like Charlie in Flowers for Algernon gradually slipping back into his original state and there wasn’t a thing I could do to stop it. During this time, I put much of my hope in my new doctor who specializes in environmental medicine. However, with his various treatments during the next ten months, I actually got worse rather than better!
Yet, I believe that these treatments are beginning to work. And as I pay attention to my small accomplishments, I realize I am making progress. For instance, last Thursday evening my daughter was hosting a Princess House party and obviously I wanted to attend. Even though my sister-in-law drove me home early and she needed to help me out of the car and into the house as I felt like Raggedy Anne, I still felt encouraged. I actually got to go out that evening and the next day I rebounded back faster than I usually do. A further indicator of progress is that yesterday I walked into several stores where I had had severe reactions last winter and as of today, there has been no consequence! This morning my daughter drove me to the dentist where I sat for two hours to have more amalgam fillings removed. In past sessions, I could hardly wait to get home and go to bed. Today, though tired, my daughter drove me to Coast Mountain Sports so that I could purchase a fall jacket! To note even more progress, despite the constant “setbacks”, I have still been able to do some form of exercise four times a week during these past 28 days. That alone is worth a lot of celebration! And what makes me particularly excited is that Greg and I are considering a holiday. I know even on Sunday Greg looked at me and wondered if we were being wise about leaving,since I was doing so poorly. However, I believe that this holiday will be good emotional therapy. My doctor believes my symptoms would worsen if I go on an airplane, therefore, we have chosen a road trip. After spending so many hours at home, I am excited about driving in the car appreciating the scenery, listening to good music, and participating in good conversation. I can tilt my seat back when I need to nap and have my longer nap when we arrive at a hotel. Even having this attitude tells me I am feeling better since 6 weeks ago I couldn’t have imagined being able to do this. I still haven’t figured out how to get the energy to pack my suitcase, but it just means that whatever I take will be just fine!
Yes, sometimes you just need to know what to look for when you assess progress.
Calcium is still number key in the prevention of not only bone loss. Studies showed that people that ate diets high in animal protein were more at risk for fractures than those that had more than 800 mg of calcium a day. Also it is true that protein and calcium taken together could also benefit the bones only if the calcium did not go below 800 mg. Without 800mg or more of calcium daily the potential for hip fractures were greater and this was studied over an approximately 30 yr time frame. Over that course of time the study participants that followed a high protein diet and took calcium over 800mg a day were over 80% less likely to have hip fractures risk.
I have been following Lisa Ray’s blog http://lisaraniray.wordpress.com/ and am humbled by her humour and candor and intelligence in dealing with her recent diagnosis of Multiple Myeloma. I applaud her for putting a face, even if it a “moonface” to this disease and helping to raise awareness for it and all cancers. No chronic condition is ever in any way pleasant to have, but cancer just has to take the cake. Not that it’s a contest, or anything! I don’t want to win, please don’t misconstrue my meaning here. After all, I had RSD– more painful than cancer pain anyday, according to the McGill Pain Index (and by far!).
But hey, I put up with that for 18 years. Then I got my leg cut off.
CHOP.
OK> not the whole thing, just the right one, above the ankle.
Muchos better now. I know, I know. A bit extreme, but what is a girl to do? No matter what, the leg just wasn’t getting any better. It wasn’t responding to treatments. The pain was increasing. I was taking over 17 meds and I forget how many supplements a day. A DAY. Do you know how hard it is to go to the bathroom when you are on that kind of regimen? Jeesh! Let’s just say we won’t go there.
Over the years the chronic pain of my fibromyalgia has been exacerbated by the pain from my leg. By a whole lot, but I had no idea it was having such an influence. My average daily pain levels have gone from an average of 7-9 on a 1-10 pain scale to a 3-4. My migraines have decreased as well. I don’t ever expect to be free of pain, but I can “live” with this! My left leg, the bad knee, still spikes up higher than that, but it is isolated pain, instead of overall. One thing at a time. One thing at a time. Keep the Yellow Diaries coming….thanks for the head check Lisa Ray.
I came down with Chronic Fatigue Syndrome in January of 1990. It was what they call sudden onset and it hit after the worst flu of my life.
It took almost a year of physical chaos to be diagnosed — Fibromyalgia in the context of Chronic Fatigue Syndrome, with viral onset. I was 36 years old. For the next nine years I felt doomed. Pain, fatigue and severe cognitive disruption limited me to the smallest life possible.
Then something turned, and in the years since, I have had longer and longer periods of semi-wellness interspersed with what we PWCFS (persons with Chronic Fatigue Syndrome) call “flares” or flare-ups. Some symptoms are permanent, some come and go, but I am not the same person I was before that flu.
There is no cure, but doctors are following many different theories to provide treatment. “Research has established the existence of CFS. We must look to future research to teach us how to detect, diagnose and manage the disease until we find a cure.” – CFIDS Association of America
Since I seem to be continuing the stream of dreams intent on restoration of the past, I will include this one from last night.
k
III
They come in and get me. We go down a long hall to a big room with a round table. The doctor at the table reminds me of a doctor I once knew, a scientist. He reminds me of him because of his intensity, and his excitement at the results of my tests.
He shows me the results. A 65 score in that range meant that it is guaranteed I have the organism, and that it is causing most of my symptoms. He’ll give me meds and I’ll be well! I have to slow down and ask him to write down the name of the organism and the drug he’ll use to treat it.
I go to a nearby office and tell my friends what happened and that I am so excited. All these symptoms will be gone. The dizziness, fuzziness, pain and fatigue.
DAY 20: If it doesn’t make me feel physically worse, do it even when it will be difficult.
“The path of least resistance is the path of the loser.” H. G. Wells
When I began this focused health program, I began riding my stationary bike for only 10 minutes. I have been gradually increasing the minutes so that presently I do 15 minutes. I have also begun spending 10 minutes lifting 3 pound weights Monday, Wednesday and Friday. Last week I began doing some very light yoga exercises following a DVD of Leslie Stansone’s whose goal is to help those who are really not very fit. I would like to continue that practice doing those exercises Tuesday and Thursday mornings. I don’t have any formal program for the weekends except that I hope to incorporate more walking outside. I know I need to walk more often outside but I have been trying to introduce everything gradually – which is really difficult for me.
This morning I was still feeling a lot of the effects from a rather difficult weekend. When I finally pushed myself out of the bed, I felt very dizzy and weak and I rolled back onto the mattress and slipped under the covers. However, my self-talk was distracting me: “I can’t go downstairs to ride my bike. Oh dear, what if I begin to slack off? I don’t even want to get out of bed let alone exercise. Oh you whiner. Do you remember reading about Michael J. Fox who must go through excruciating pain every morning in order to rise out of bed, but he does it? You need more self-discipline.”
While I was beating myself up with my self-talk, Greg asked me if I was going to go downstairs to exercise. I told him I didn’t think so. Thankfully, my husband knows me often better than I know myself. He said, “ Just sit on the bike and see if you can pedal for 10 minutes. Knowing you, you can’t go downstairs since you don’t think you can ride the bike longer than ten minutes and you want to lift weights on top of it.” After he left for work, I lay in bed and I asked myself a very important question: Will my symptoms get any worse if I ride that bike for ten minutes?
As long as I don’t over do it, I knew that the exercise would probably help the circulation in my legs and might even help the pain.
I proceeded to put on my shorts and top, and went downstairs to ride my bike. I rode slowly and as usual at a low tension and at times I used my hands to push my legs down to pedal. But when I stopped, my self-talk was no longer negative. I was now saying, “Way to go, Gayle! I am going to make it. I am going to become healthy since I am prepared to do what it takes!”
It would have been so easy to choose the path of least resistance and to surrender to the pain, dizziness and weakness and convince myself that it justified my resting and not exercising. However, that choice may have been the easiest, but I have resolved to do the hard things and do nothing to hinder my resolve to optimize my chance to be healthy.
I lay here in bed with my laptop and look for the time and see it’s after five am….. still no sleep…. still pain….. my skin hurts and all the same old same old…. topped off with psoriatic arthritis hurting in my hands and knees …. just for good measure…. I guess this monster called FMS wants to show it can be fair and let another illness have equal time…. wouldn’t want to be rude or greedy….as I think about this… I have to wonder….I claim as mine the bed, laptop, skin, hands, knees, but claim no ownership …..of the monsters ….. but……. if I didn’t get this like you can a cold or flu….. then the monsters must come from with in me and therefore are a part of me? Yet I feel like I have no control over it and what it does to me…..and again I find myself saying “it”…. OK my monsters within….ohhh… soon the sun will come up and another night will have passed….so what? Celebrate that I lived through another night? Now what? Try and struggle through another day?…. Just to see the setting of the sun and look into the dark of another night? I am just so very tired….I smile and make jokes try and keep things light…. who wants to be around or talk to someone who is in such a world of hurt and all the other crap that is a part of “MY” monsters….no one… heck I don’t even want to be around me…. I wish I could say hey man this is some funky stuff and sorry but I can’t handle all this right now….. I’ll come back later when things get better…..and then get up and leave…… only problem with this…. I’d only tag along right after myself cause I can’t quit me and leave me like most everyone else has done….. hmmm….crap….. so that’s it…. now the tears…. cause I just realized when this is…..should have known…. when the dark mood started in… this is when that jerk that I loved with all my heart and soul….. the only person I ever allowed to get close… the jerk that said he didn’t care what this…”MY” monsters did to me….. he would never leave me… wanted to spend the rest of his life with me…. take care of me ….. the only one I ever believed really meant it…. yeah right…. didn’t know that three years is what all those promises meant…… rest of life = three years…….never = three years ….. should have read the fine print….. I never trusted anyone on the face of this planet like I did him…. I let down all the walls and for the first times in my life I felt loved and safe…. and never saw it coming….. and when I hear people say things will be less painful as time goes by…. well THAT’S BULL CRAP ….. you just try not to think about it but when that time comes around each year…it hurts just as bad as it did when it first happened …. you just try and move on past it as fast as you can and feel safe in knowing that at least now I don’t need to worry about that any more because no one will ever be allowed to get past that newly built up wall….. gotta have some protection…. that kind of broken heart can never be fixed and that soul is lost….. So, now remembering this…. does this mean I feel like this because of this or is this just making how I feel worse than I already was feeling? Oh heck what does any of it matter? It is what it is and why …… who cares it won’t change the out come nor the course…… so suck it girl and move on….. life sure has and will continue to do so with or without me and my monsters…… so play time with my “inner child ” and “feelings” is over…. now slap that smile back on my face and step back into the ring for another day …. the sun is coming up….. Lila
Please note if you are reading this post and you are not on the web site “Lila Lost in the Fibro Fog…” then what you are reading has been stolen and is being used without my authority and I hope you will come to my web site blog at wordpress http://www.lilabyrdakabirdladybyday.wordpress.com
*Keep away from people who try to belittle your ambitions.
Small people always do that
but the really great make you feel that you, too, can become great.*
~Mark Twain~
My lucky streak of sleeping all night has ended sadly. I woke up at 4:30am this morning and couldn’t go back to sleep. I like to call 3-4 am my fibro witching hour. I always wake up around that time & can’t go back to sleep during insomnia phases. Yesterday I was leaning forward to let hubby put a icy/hot patch on my mid-back and pulled a muscle in my lower back. UGH! Been tough to move. Otherwise I’m doing well today.
It’s Labor Day today which means no work or school for the family. I’m working away on my baby (Crafters with Love). It’s growing every day and it just amazes me the response I am seeing. Everything I attempt to do for it to grow is taking off. Every day I’m pleasantly surprised with new ideas, offers and willingness of other people to want to learn more about it and help. I have another crafter on board, my best friend Kathy, who makes amazing jewelry. I’m also in the process of getting confirmation back from 3 more who have offered.
Let me also say that I am forever grateful to my friend John for all his time, advice and efforts in helping me. Roxie, who has lent her talents to the cause as well as wonderful ideas to promote it. Amy, for her gorgeous painting talents & Dawn along with everyone on Twitter & Facebook for passing the word along.
All of this is proof positive that the “feel good” chemicals in the brain help get rid of pain.. Since Crafters with Love has taken such a tremendous leap recently, my pain has been a lot less. I’m more tired, of course, but that’s ok. It’s worth it because at the end of every day my heart and soul beams with pride at the accomplishments I & my team have made toward our goal.
My team= my most loving and caring friends who are working right beside me on their own time toward bettering Crafters with Love. If in the end, all my efforts fail with the charity (which will not happen) I still have learned who my true friends are and know that they believe in me. AMAZING people that I’ve never even shaken hands with. It’s so great to still be able to believe in the human spirit and people after having spent a lifetime of being able to count on no one.
Funny thing, someone asked me if I was working today and when I replied that I have too many health problems to work they naturally & sweetly apologized, immediately my response was “don’t be sorry, my health problems were just a redirection.” I’m not working as a nurse like I hoped to be, but I’m doing something just as good if not better. Better, because it’s all on my own and nothing is expected of me that I can’t give.
I didn’t like to blog about Fibro before (and probably why I haven’t formed that new habit I wrote about before) because I always felt like I was complaining. Now I’m finding I WANT to blog. For the first time since becoming sick, I have exciting stuff to say that over rides the bad stuff happening to my body. I hated when people asked how I was feeling because I had nothing positive to say. On my worst days, when it was really tearing me down emotionally I kept it inside because I didn’t want to depress anyone with those bad thoughts & feelings. I felt like I had nothing to look forward to the next day except maybe a glimmer of hope that I would feel better. Every day I wake up now since my charity has taken off, even if my body lets me down and I have to stay in bed the whole day… I can say I accomplished something great and still have something else to look forward to.
What a blessing of love I’ve been given.. giving and receiving each and every day.
The recent emergence of study into ‘pacing’ or activity regulation in pain management is a welcome addition to our knowledge of this coping strategy. Although pacing has been described and included in many self-help books as well as clinical texts as an effective strategy for people with chronic pain to use, the research base for its use is pretty skinny (see Gill and Brown, 2009). McCracken and Samuels (2007) found that increased use of pacing was associated with higher disability and less acceptance, while Nielson and Jensen (2004) found that it was associated with lower disability in people with fibromyalgia.
The study I’m looking at today, by Karsdorp and Vlaeyen, looked in whether pacing specifically was different from ‘other behavioural strategies assessed with the Chronic Pain Coping Inventory (CPCI), such as guarding, resting, asking for assistance, relaxation, task persistence, exercise/stretch, seeking social support, and coping self-statements.’ The second part of this study looks more closely at whether ‘pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI.’
The methodology was pretty simple: a random sample of around 400 patients from the Dutch Fibromyalgia Association responded to being sent a set of questionnaires, a response rate of 68%. 388 women; mean age = 47.58 years, SD = 10.18, range 18–75 years. The mean duration of pain was 160 months (SD = 116.79). Thirty-four percent of the patients had a job and 39% of the patients received income from a disability income insurance.
The questionnaires used were the Chronic Pain Coping Inventory (Jensen, Turner, Romano & Strom, 1995). CPCI comprises 70 items measuring 9 behavioural strategies: Guarding (9 items), Resting (7 items), Asking for Assistance (4 items) , Relaxation (7 items), Task Persistence (6 items), Exercise/Stretch (12 items), Seeking Social Support (8 items), Coping Self-statements (11 items), and Pacing (6 items).
Pain intensity was measured using VAS, catastrophising was measured using the Pain Catastrophising Questionnaire (Sullivan, Bishop & Pivik, 1995), functioning was measured using a fibromyalgia specific Fibromyalgia Impact Questionnaire (FIQ-PH) (Burckhardt, Clark & Bennett, 1991), and the Pain Disability Index (Pollard, 1984) were used. Note: these were translated into Dutch for this study.
Thank goodness for statistics! Multiple regression analysis was undertaken – two hierarchical regression analyses were conducted with physical functioning or disability as the dependent variables. The first step included gender, age, and education, pain intensity, and pain catastrophizing. At the second and third step, the 8 CPCI subscales and the pacing subscale were entered, respectively.
What did they find?
At step one in the regression analysis, the demographic variables, pain intensity, and pain catastrophizing explained a significant amount of variance in physical functioning.
Older patients, patients with more severe pain, and patients who tended to catastrophize about pain reported greater physical impairment and more disability.
At step two, the 8 CPCI subscales without the pacing scale reduced the effect of age and pain catastrophizing to zero and significantly explained an additional amount of variance in physical functioning.
At step 3, the pacing subscale did not explain a significant additional amount of variance in physical functioning, leaving, in the final model, patients who avoided physical activities and asked for assistance to manage their pain reported greater physical impairment and more disability, even when controlling for demographic variables, pain intensity, pain catastrophizing and the other behavioural strategies.
So, what does this mean?
Remember, the first question was whether pacing forms a separate scale within the Chronic Pain Coping Inventory, and it seems to – at least in this Dutch version of the CPCI. Pacing is different from guarding, asking for help, avoiding and so on.
The second question was whether pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI. The reason for testing this hypothesis was to ascertain whether ‘activity pacing is an adaptive behavioural strategy that could be taught in pain management programs to improve adjustment in FM.’
Zero-order correlations revealed that patients using more pacing strategies reported greater physical impairment and more disability as opposed to less physical disability, so perhaps not such a great strategy to use – but wait: regression analysis demonstrated that pacing did not significantly contribute to physical functioning and disability over and above demographic variables, pain severity, pain catastrophizing and other behavioural strategies reported in chronic pain.
This means that the present study suggests that helping patients to increase pacing strategies in pain management programs may not be a key element in diminishing disability in FM. The authors suggest that the context in which pacing is used may determine whether it’s adaptive or not. Some patients may use pacing as an avoidance strategy, while others may use it, along with graded activity, to increase their ability over time.
The two strongest predictors of disability in this study were guarding and asking for assistance, which are likely to be dysfunctional strategies in FM. This shouldn’t be surprising, as these findings fit with the fear-avoidance model of disability.
Now, some caveats when interpreting this study. Don’t ever confuse correlation with causation - this is a correlational study, so there could very well be some intermediate factor that moderates the effect of activity pacing and disability. The authors quite rightly identify this. Longitudinal and experimental designs are needed to explore the relationship between activity pacing and disability in much more detail. Observational studies are needed to counter the self-report nature of the study instruments in this study. (Of course, we know how difficult observational studies are to carry out!).
Nevertheless, the authors suggest (and I agree based on my experience) pain management programs targeting activity pacing or behavioural strategies in general may not be effective in FM. Instead, therapeutic interventions based on fear-avoidance models specifically targeting paradoxical safety behaviours are likely to be useful in FM. I’m not sure we do exposure therapy as well as we might – and I’m certainly not sure we identify safety behaviours well at all. Perhaps something to explore in the future?
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Karsdorp, P., & Vlaeyen, J. (2009). Active avoidance but not activity pacing is associated with disability in fibromyalgia Pain DOI: 10.1016/j.pain.2009.07.019
J.R. Gill and C.A.A. Brown, Structured review of the evidence for pacing as a chronic pain intervention, Eur J Pain 13 (2009), pp. 214–216.
L.M. McCracken and V.M. Samuel, The role of avoidance, pacing, and other activity patterns in chronic pain, Pain 130 (2007), pp. 119–125.
W.R. Nielson and M.P. Jensen, Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome, Pain 109 (2004), pp. 233–241.
DAY 10: I will create more positive associations to help manage pain.
I often get quite feverish with exceptional heat generating under my skin that my husband claims can heat up a room. But presently, I sit in my reading chair wearing a long sleeved t-shirt and a hoodie, a pair of jeans, and I have a blanket draped over my legs and lap. It is raining and my joints and muscles have this deep cold ache.
Apparently, this reaction to weather changes has been substantiated in several studies. “ In 2002, a study was conducted in Cordoba, Argentina, where there are four distinct seasons every year. The study involved Fibromyalgia sufferers and a healthy control group and aimed to find out whether pain symptoms could be linked to specific weather changes. Participants were asked to rate their pain symptoms on a scale from one to ten, every day for 12 months. After 12 months, these symptoms were correlated to weather patterns for the entire year. Researchers found that pain symptoms of the participants with Fibromyalgia correlated directly to weather changes. Specifically, pain increased as temperatures fell and atmospheric pressure increased. The healthy control group did not show any correlation between pain and weather patterns. Another study performed in Norway found a similar relationship between Fibromyalgia symptoms and the weather. Fibromyalgia symptoms appeared to get worse during the months of December and January, but began to improve during April and May. This suggests a direct relationship between colder temperatures and lower barometric pressures and a rise in Fibromyalgia symptoms”. http://www.fibromyalgia-symptoms.org/fibromyalgia_weather.html
Somehow knowing that this increased pain isn’t just “in my head” doesn’t really comfort me and in fact I am dreading the cold that will be settling into a daily fact. I was tempted not to post a blog today since I just wanted to settle into a chair drinking tea and reading a novel to distract me from the pain. However, I am determined to stay focused on optimizing my healing environment. I just read an excerpt from Jack Canfield’s book The Success Principles and I don’t really know how to respond to his statement: You either create or allow everything that happens to you. By create, I mean that you directly cause something to happen by your actions or inactions.” Again, I know I didn’t “create” this illness; however, I am determined to wrestle with this statement to extract any gems of truth from it that may help me cope with these weather changes. I checked on the Internet for some suggestions and there were only the obvious recommendations of dressing in layers and keeping the extremities warm. I suppose I could add soaking in a hot bath that has lots of Epsom Salts. And I could continually put linament on my fingers to help the joints move more easily. However, I actually feel that outside of moving to a drier climate, I really don’t have many options to choose from. And yet, Jack Canfield’s statement tells me I DO have options!! Perhaps due to my dread of weather changes and due to my expectations that these weather changes will definitely impact my health, negative thinking may not be helping me cope with what happens to my body. Somehow I must create more positive expectations when the weather begins to pummel me. I have to create a new association replacing the dread with acceptance. I accept this pain since I know it is temporary and when it occurs I will associate it with some good, positive things. That is, I will create a warm, cozy, positive environment in which I give myself permission to indulge in some small pleasures. For example, I could put on the fireplace, light some candles, watch a fun movie – and indulge in a few chocolates, or other favorite snacks. Wow, I’m already having a different attitude about this rain!!
“In reading the lives of great men, I found that the first victory they won was over themselves.” Henry Truman
As part of my program to optimum health, I had determined last week that I would ride my stationary bike every day for ten minutes. I had determined I had only one excuse and that was if my symptoms got so completely out of control it would be difficult for me to walk downstairs. Otherwise, I would at least need to sit on the bike to determine if I could ride the bike or whether I could at least do a couple of minutes. I am trying to eliminate my “all or nothing” mentality. Also, my past history was to decide to do laundry or wash dishes or do some other mundane household chore first just in case I didn’t have the energy to do both. In other words, I wasn’t putting my health as a first priority.
Anyways, I am celebrating a small victory tonight. This morning I didn’t rise out of bed as early as I should have since my body wasn’t cooperating. When I got up, I remembered that a plumber was arriving around 8:30 this morning. My typical reaction would have been to quickly shower, blow dry my hair, get dressed and be “ready” well before I knew anyone would be arriving at my place. However, this morning, I realized I couldn’t do this since my first priority was to go downstairs and ride my bike. This set me back by at least 20 minutes and the fellows arrived before I was fully dressed and with my hair wet. Fortunately, my husband was still home and he talked to them a few minutes while I quickly put on a shirt, grabbed a blow dryer and brush and quickly moved into the other bathroom. I thought I could make this transition smoothly and quietly but my husband called out, “Is it okay for them to come up?!! Apparently, nothing could frazzle me this morning!!
This may seem like a pretty small victory, but I have never been so focused to choose what is best for me over my false sense of what was more important. I find that this small action has empowered me to believe that I may actually “get it” this time: Every other priority must take a lesser importance than my priority of getting better. It makes me believe that my 365 day challenge to optimize my health may just work!! It also has made me aware that celebrating these small victories can actually propel me more easily toward my goal.
In the past 3 years I had seen numerous doctors, each giving me ‘meds’ for either my pain, headache/migraines, swelling and depression. I was also sent to another who gave me injections for my pain, which usually presented itself in my joints. (legs, hips, arm, elbow, foot, neck and back).
I had always been quite athletic and outdoorsy kind of person. Hunting, fishing, camping, gardening, 4 wheeling and that sort of thing.
But 3 years ago I was diagnosed with Lupus. It was rather difficult and the depression set in. I considered myself; strong, intelligent, athletic, and all around ‘normal’, so when depression set in, I was really surprised that my whole attitude changed.
Monday, August 31, 2009 will forever be en-grained in my mind.
I had my appointment with a rheumatoid specialist for the results on my blood work up.
I hurt. I am tired of hurting. Oh I know it could be worse and others hurt too and feel for them I really do. Not only do I hurt I am exhausted beyond normal exhaustion. I try not to complain, do my thing and not show how bad it really is but today its unusually bad and I hate it.
The dishes aren’t done, it seems no one in the house knows how to do them (there are two other adult females), things aren’t picked up. This annoys me to no end, even when I have said something nothing changes. They mess it up and I am supposed to clean it. One told me I had no idea what pain was! Okay. Now I am pissed. I know what pain is I live with it everyday. Some days it is worse than others and some days even worse. BUT I look fine, though I am not.
Very rarely do I get angry, usually frustrated, but today I am angry. Angry that I hurt, angry that people don’t recognize that. Angry that I have no help when they could help. Just plain angry. I miss the old me……..
