The winter of my discontent: the spring of my hope for ‘fibromyalgia and the strengthening machines’
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ’I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do” , Eleanor Roosevelt
So now has ended my winter of intense pain. It is spring time. A time of hope. I am about to embark on a new adventure: strengthening machines with my personal trainer, Nick, the physiotherapist. He is an expert on pain and his view is that with fibromyalgia, slow and gentle strengthening of the muscles through weight bearing helps to decrease pain by increasing mobility. After weeks of work on my nervous system, bringing about more mobility following a bursitis attack on my left hip, Nick suggests trying the weight bearing room. I agree with some hesitation and much fearfulness. I will chronicle my results for the next few months. I have not been able to walk much all winter without pain but I am slowly getting better. Will this bring about more pain and make me worse? What now, I wonder? Let me take you on this journey with me:
April 4, 2008
Today I spent only 2 minutes on a machine with my feet planted firmly against a hard surface pushing against it. The movement was slow and gentle, no great resistance. It did not hurt, not even my vulnerable left hip. I left the Wellness Centre feeling optimistic. The rest of the day and all day Saturday I was somewhat euphoric thinking I could manage this exercise of strengthening and perhaps subsequent pain reduction, and able to resume walking without too much discomfort.
Alas! Saturday night, 30 hours after the experience in the weight room, I awoke with excruciating, burning pain in both legs; my left hip felt as though it was on fire and a sharp jabbing pain in my hip continued for almost 36 hours without stop. I tried cold then hot packs. All day Sunday and half of Monday I suffered dreadfully, taking enough pain medication to make me groggy. I e mailed Nick that I could not continue as just that small amount of stress was overwhelming. I should have remembered that my fibromyalgia attacks do not occur immediately after physical or emotional unusual episodes.
April 7, 2008
On this Monday I visited Dena, my chiropractor, who was amazed at how badly my pelvis had twisted. After her adjustment the jabbing pain left me, almost immediately (thank you Dena!) even though I continued to have pain in my knees and an overall fibromyalgia flare-up. Both hips throbbed. Dena advised me to keep on with the program and volunteered to work closely with Nick if he so desired. She approves of team efforts as many professionals have different expertise to offer and each can enrich a program. I agree, but only if their views are not competing. So far all agree that I have an unstable pelvis.
April 8, 2008
This Tuesday I visited Nick and we talked for 1 hour, no treatments. I was hesitant to continue. The decision was mine, there wasn’t any pressure from him. It was a tough choice. Do I end this here and now or try upper arm strengthening? I decided not to quit, but not convinced it was a good decision.
April 11,2008
Fearfully I went with Nick to the dreaded weight machines room. The arm exercises lasted only 2 minutes and were again very gentle and slow. The results? No pain! Hooray, I can do this with my upper body and also do some stabilizing exercises for my pelvis at home. I am so proud I did not give up! Great week-end although my hips continued to ache. I am wearing a pedometer and have walked 10,000 steps to-day. My right knee aches too but no big fibromyalgia flare-up.
April 14,2008
Another day of a different 2 minute arm exercise. More troublesome. Neck and shoulders somewhat uncomfortable during the process. Each time Nick says if I feel discomfort in the neck area to discontinue immediately. He coaches me through it all. Rest of day not too bad. Next day: agony again. Both knees aching and hips throbbing. Wearing pedometer but only walked about 7,000 steps and mostly very short walks with too much pain to do anything more. Will have to cut down on walking. Lasting through another day of pain on April 15th. The urge to stop this process is a strong one. Sore hips and knees and lower and upper back aching. What’s that old song? “The neck bone is connected to the hip bone” etc etc…. or something like that?
April 16, 2008
Saw Dena again for a check-up to see if pelvis is stable. Not too bad. She is very encouraging for me to continue. Fatigue is exhausting to-day. Barely getting around.
April 18,2008
Fatigue yesterday due to change in barometric pressure. Raining. I keep forgetting how much our fibromyalgia sensitivities involve something as simple as a weather change about to happen.
Had a 5 minute total on 3 machines workout…all for arm and upper body strengthening. Again, I ask the question: What now? So far to-day no ill effects. Always feel like I am accomplishing something by addressing my fears of causing more pain than I already have. This week-end will tell the tale after 5 minutes of low, slow, and gentle weight bearing. It feels like a sledge hammer is trying to break through the cemented muscles of my tired, stiff body. More importantly I am trying to ‘train my brain’ to accept this new challenge. Nick says it “may hurt but it won’t harm”.
Nick suggested a book called Explain Pain by David Butler and Lorimer Moseley which I shall order.
April 20,2008
Once again the pain did not begin till 36 hours later. My whole left side, especially chest/ribs: burning pain. The nervous system is so fascinating. After an unusual event it seems as though the rest of the energy it has stored keeps on helping us along for a few hours more. Finally, a crash after we are depleted, sometimes 36-48 hours afterward! The Explain Pain book tells that there may be a “latent period before pain comes on after an activity” (p.83).Then the slow process of attempting to equalize the overstimualted nervous system begins again. I hope this is a shortlived flare-up as I have another session tomorrow morning. To-day is a day for resting a little, while still maintaining some degree of mobility.
April 21, 2008
Nick and I had a long talk to-day. My restorative levels are so slow that we are wondering if I should continue. Even more important, how long should I continue if I keep going on like this, becoming more fatigued and experiencing so much pain? I decided a few more weeks would be worth the effort.
We had only 2 mins of the first arm exercise I did which did not cause pain. I was uneasy but felt fine (as always) during the process.
April 23,2008
Great news. No ill effects whatsoever from this exercise. Have now done 5 and only 2 did not cause excess pain a day and half later. Now I am ready to try again tomorrow. The book arrived (although I had read some of Nick’s earlier, I now have my own copy) and it is a good, funny and easy to read exploration of pain. Many of the same points I have made in my own book but this one is more specific to the physiology of pain. I recommend buying mine (of course!) and the Butler and Moseley one together with mine!
April 24, 2008
Did three different things today. One series of ’static’ resistance against Nick’s arms as the barrier for my neck . Then another ’static’ resistance for opening the chest on the machine. Finally a 2 minute arm weight resistance with slightly heavier weights. What will the week-end bring?
April 28, 2008
Had a good week-end without pain in any of the areas I worked last week. Still a great deal of pain in legs and hips, but no new flare-up.
Today I did a 5 minute workout with static resistance again and 2 arm strengthening exercises with heavier weights. Very slow and gentle but in all I did those for 5 minutes. Tired and sore afterwards. This has been the longest session yet and the weights keep increasing!
Came home to read more of Explain Pain book which continues to be really helpful.
Saw Peter, my osteopath DOMP(Diploma Osteopathic Manual Practice) for a bi-yearly check-up. He strongly encouraged me to keep up with this weight bearing regime as where else is there to go but more weakening if I stop? Well, I have an excellent long term therapeutic relationship with he and Dena and they are very supportive so I am still in it for a long haul.
May 1, 2008
Big day…4 different machines. Static resistance for neck, more arm work with heavier weights and 30 seconds of static resistance for legs. Oh! Exciting stuff. Slow, gentle (well, hardly gentle when doing the arm weights!) process, but some progress. I have not had an ill effects from the last three sessions!
May 2, 2008
Big flare-up of fibromyalgia and recognize why. Definitely NOT from the arm weights and static neck resistance but more localized to hips and legs. I am in that realm of the ‘boom-bust’ pattern which Butler and Moseley define as those who have pain which “comes on but you persevere, you tolerate it as much as you can, and try to ignore it, keep going, distracting yourself (’boom’) until suddenly your pain is unbearable and you ‘bust’- flooding your nervous system with danger chemicals and leaving yourself completely wiped out for days, maybe even weeks” (p.104).
Yep! That’s me for sure. I overdid things all week since I was feeling rather cocky. Now I am learning about PACING! What an agonizing process this is, re-educating my brain! In the meantime I have to wait out this flare-up.
May 5, 2008
Ah! Another day of even heavier weights; getting much more strenuous now. Nick says that while this process will not directly affect pain, nor is it meant to be about pain control, nonetheless as muscles become stronger presumably I will feel less pain upon exertion. So, it is an indirect effect.
It was tough going to-day, both static resistance for legs and static for neck while strengthening, heavier weights for arms. In the words of one of my favourite performers, Leonard Cohen: “I hurt in the places where I used to play”. I have to remember that “hurt does not mean harm”.
May 9, 2008
Oh-mi-goddess! What a day in the WR (weight room)! The weights are getting heavier and using more machines than ever now. Working on static resistance on the neck; arms becoming fatigued during the process; doing a little leg resistance on a chair. To-day is our wedding anniversary…will I have the energy to go out for dinner?
May10, 2008
Last evening was just fine. I ate too much at a fancy restaurant and hardly slept though. Bad omen. But, no pain from the Wicked Room…oops. the Weight Room!
May 11, 2008
Too much stimulation from Mother’s Day and my parents’ wedding anniversary. Caught a bug, I think. Woke up with cramps, fever, chills, aching that feels different than fibro pains… all that extra eating and food preparation by others? Haven’t had an actual flu or cold for a long time.
May 12-15, 2008
Time out week. Had to cancel my appointment with Nick. No energy, weak, feverish first day, then lack of appetite to top it all off (that seems to be the only nice thing about this experience!).
May 16, 2008
Back to the Wellness Centre. More energy than I had all week when I could only do little walks around the block without feeling nauseated. Nick was understanding and we did what I call the “baby weights”, that is, on the lowest possible exertion level. Suits me today! Energy returning, but not the appetite (think I have broken the sugar addiction this past month, although it will be a life long addiction; can I now call myself a ‘recovering sugarholic’?). Now of necessity doing the portion control trick.
Saw Dena very briefly and she said my pelvis is holding and did not need much of an adjustment, yahoo! Of course it is because I haven’t been exerting myself this week. What a contrary thing this body is now! If I exercise it hurts. If I stay still for days on end it feels better. Nick says yeah, but it is because I am holding myself more rigidly. His mantra: ” motion is lotion”. Damn, I wish that lying about and eating candy was good for us.
May 17-20, 2008
Raining, cold, windy, damp…the worst for fibromyalgia. Low energy and pain in my hip not subsiding. However, no after effects from the strengthening exercises. Keep wondering if the bursitis in my left hip will ever go; bursitis is common in fibromyalgia. It has been hurting since November and difficult to walk for long periods of time!
Upper body feeling fine though. I know now I can do some gentle, slow paced exercises that keep progressing in difficulty, at least for the upper body. PACING is my mantra and BREATHING! Holding my breath in stressful situations is a long habit with me. Bought a bio feedback hand held machine and using it to help with breathing before sleeping. Just the sight of it in the house makes me remember to breathe slowly and deeply!
May 21, 2008
Phew! Seems like I have been at this forever and yet, to-day for the first time I actually felt as though my upper body craved the machines! Gasp! It isn’t fun but I feel less rigid when it’s over. BUT, it’s much happier leaving than entering the weight room. Part of all this is that Nick is very attentive and I know now I won’t harm myself (hurt? yep!) so I have developed more confidence. Still wary about the leg strengthening because of the hip. Doubling up on salmon oil capsules and Vit D. Yearning for warmth and sun.
May 26,2008
Today I utilized 6 different machines. On one I have gone form 20 to 34, Nick is pleased with this 75% increase. It rarely hurts my upper body. Still struggling though with my hips and legs even though I am now strengthening entire body.
Still have regular achiness, but no major flare-ups recently. Rain and wind continue to aggravate me. Pool walking again and while the chlorine in the pool is somewhat of a problem for itching it does not hurt to walk (with my pool sneakers), particularly if the pool is warm and not too many noisy/overly active people, especially children, in the pool! It helps with sleep too. My usual Melatonin and Neurontin after a day of walking 30 minutes in the pool seems like a good combination for sleep.
I will sign off now for a few weeks as I seem to be doing ok with the strengthening training. But, check in next month!
June 13, 2008
It is 10 weeks today when I first began the slow burn machines. My upper body is doing remarkably well. My lower body is a big challenge. One small effort with legs/hips and I am in bad flare-up. Nerves are ‘entrapped’ in my left hip. Both legs burn. I can barely walk without great pain. So here I am with more upper body strength and less leg mobility.
Walked in the pool twice this week and although there isn’t any pain while in the pool the pain begins much later, either during th day or the next few days. I tried pacing for a few minutes only, then next times for 30 minutes each time. Neither were beneficial and Naprosyne and Neurontin were needed during the day for pain relief.
To-day I did not do any machines, which strangely enough I miss. Instead, Nick did manual work on my hip. It hurt like crazy! He was very gentle but movement of that hip was excruciating…so sensitive. He used a treatment modality discussed in a self-published manual by Diane Jacobs PT (see my Diane Jacobs link) which could be accessed by a PT through contacting her. It is called “Dermoneuromodulation”; it is a treatment system which “addresses soft tissue dysfunction” (p.3 of Jacobs manual). While I don’t understand the language (meant for PTs), I was able to at least have a small inkling of what is intended. Basically it involves PTs using their hands to move across the skin in a particular fashion “to engage the nervous system and feel it self-correct” (p.4).
You will know by now that I believe that fibromyalgia is the result of an over stimulated nervous system. Therefore, if I have entrapped nerves in my hip and these nerves are released manually by a trained PT, my theory will be somewhat supported. Time will tell…
July 1, 2008
Happy Canada Day! Had a bad night last night as it had been raining off and on for several days and it was about to clear. It was sunny and warm to-day for a change. I am fatigued. I have had ups and downs for the past two weeks. Summer humidity not good! My hip continues to ache and I am thinking that this bursitis is likely to continue as a very vulnerable area of my body. I miss long walks so much. I go to slow burn twice a week and although the upper body is becoming stronger the lower body is not. My legs ache constantly, even during the night. This is something new since the past few months. I wonder if the machines are aggravating the lower body even though I don’t do exercises below the waist? Still not convinced that this is the right approach for me but I have little choice now as I need to do the CV exercise! There is nowhere left for me to go. I am busy reading Full Catastrophe Living, trying to become more mindful even as I use those machines. For the first time ever pool walking is painful (for my hip after I leave the pool). Trying not to get too discouraged.
July 4,2008
Did some lower body leg resistance training to-day. Wonder how that will be by tomorrow?
July 5,2008
Bad night; many leg pains. I felt as though my legs were on fire. Does that mean I can’t ever do leg exercises again? Discouraged.
July 11,2008
As long as I keep the strengthening exercises to the upper body I am fine, but whoa! cannot do leg exercises…too painful and my recovery time is slow and agonizing.
July 20, 2008
I do believe that slow burn is the right exercise regime for me and I have tried everything else over many years and cannot tolerate any other. At least with this strengthening, slow burn, slow approach I am stronger in my upper body than I have been for many years. I was at the stage where I could hardly even hold something light without my arms quivering. Now I can see an improvement. Pool walking is very painful for me lately and aggravating for my bursitis. Nothing seems to improve my hip. Probably weight loss of course, but not highly motivated right now. Still, in spite of the difficulties I am certain that what I am doing is good for my CVS, strengthening and overall intention of gaining more flexibility through gentle means.
August 7, 2008
Still keeping up my resolve with the process. It has been very humid this past month and fibro has been dreadful, but I am sticking with this approach. I know that any of the other routines like biking, swimming, running are not for me ( too old and vulnerable) as they are repetitive motions that do not strengthen so I am committed to the slow burn! Some days are good, while others are not so good. I began a weight reduction program last week so that should help. Also the weather has shifted so my muscles are not so sore. Cooler weather has helped tremendously.
Stay tuned for the ongoing saga of Travels Through Pain or the new title Training my Brain