Blog Archives
Lab Rats Wanted
Are you willing to put your body on the line? Or might you be at the end of your tether and willing to try anything?
As it is beyond me to list EVERY research study on FM, here are all the studies that are currently recruiting in the top 6 countries where my blog is being read:
*** If you live in another country, visit ClinicalTrials.gov, then enter your country and ‘fibromyalgia’ in the search box…you never know what you might find ***
Australia
NIL
Canada
A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression
Conditions: Fibromyalgia
Interventions: Drug: Pregabalin; Drug: placebo
The Impact of Omega-3 Fatty Acid Supplements on Fibromyalgia Symptoms
Conditions: Fibromyalgia
Interventions: Dietary Supplement: Omega-3 (oil); Dietary Supplement: Fatty Acids (placebo)
Online Acceptance-based Behavioural Treatment for Fibromyalgia
Conditions: Fibromyalgia
Interventions: Behavioural: Acceptance-based behavioural therapy; Other: Will vary per participant
India
Conditions: Fibromyalgia
Interventions: Drug: placebo; Drug: pregabalin (Lyrica)
A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome
Conditions: Fibromyalgia
Interventions: Drug: Duloxetine; Drug: Placebo
Pregabalin In Adolescent Patients With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: pregabalin
Israel
Prevalence of Fibromyalgia in Israel
Conditions: Fibromyalgia
Interventions:
Effect of Milnacipran in Patients With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: Minalcipran; Drug: Placebo
Peripheral Arterial Tonometry (PAT) Evaluation of Sleep in Fibromyalgia
Conditions: Fibromyalgia
Interventions:
Study Assessing the Efficacy of Etoricoxib in Female Patients With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: etoricoxib
Cognitive Dysfunction in Fibromyalgia Patients
Conditions: Fibromyalgia
Interventions:
United Kingdom
NIL
United States of America
Observational Study of Control Participants for the MAPP Research Network
Conditions: Fibromyalgia; Irritable Bowel Syndrome; Chronic Fatigue Syndrome,
Interventions:
Pain and Stress Management for Fibromyalgia
Conditions: Fibromyalgia
Interventions: Behavioural: Stress and Emotions; Behavioural: Thoughts and Behaviours; Behavioural: Brain and Body
Conditions: Fibromyalgia
Interventions: Drug: placebo; Drug: pregabalin (Lyrica)
A Phase 3b Multicenter Study of Pregabalin in Fibromyalgia Subjects Who Have Comorbid Depression
Conditions: Fibromyalgia
Interventions: Drug: Pregabalin; Drug: placebo
A Study of Duloxetine in Adolescents With Juvenile Primary Fibromyalgia Syndrome
Conditions: Fibromyalgia
Interventions: Drug: Duloxetine; Drug: Placebo
Pregabalin In Adolescent Patients With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: Pregabalin
Combined Behavioural and Analgesic Trial for Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: Tramadol; Drug: Placebo; Behavioural: Cognitive Behaviour Therapy for FM; Behavioural: Health Education
Quetiapine Compared With Placebo in the Management of Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: quetiapine; Drug: Placebo
Cyclobenzaprine Extended Release (ER) for Fibromyalgia
Conditions: Fibromyalgia; Pain; Sleep; Fatigue
Interventions: Drug: cyclobenzaprine ER (AMRIX); Drug: placebo
Tai Chi and Aerobic Exercise for Fibromyalgia (FMEx)
Conditions: Fibromyalgia
Interventions: Behavioural: Lower frequency, shorter period of Tai Chi; Behavioural: Higher frequency, shorter period of Tai Chi; Behavioural: Shorter frequency, longer period of Tai Chi; Behavioural: Higher frequency, longer period of Tai Chi; Behavioural: Aerobic Exercise Training
Effects of Direct Transcranial Current Stimulation on Central Neural Pain Processing in Fibromyalgia
Conditions: Fibromyalgia
Interventions: Procedure: Transcranial Direct Current Stimulation (tDCS)
Lifestyle Physical Activity to Reduce Pain and Fatigue in Adults With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Behavioural: Lifestyle physical activity (LPA); Behavioural: Fibromyalgia education
Neurotropin to Treat Fibromyalgia
Conditions: Fibromyalgia
Interventions: Neurotropin
Effect of Milnacipran on Pain in Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: Neurotropin
Investigation of Avacen Thermal Exchange System for Fibromyalgia Pain
Conditions: Fibromyalgia
Interventions: Device: AVACEN Thermal Exchange System
Phase 2 Study of TD-9855 to Treat Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: TD-9855 Group 1; Drug: TD-9855 Group 2; Drug: Placebo
Cymbalta for Fibromyalgia Pain
Conditions: Fibromyalgia
Interventions: Drug: Duloxetine
Effects of Milnacipran on Widespread Mechanical and Thermal Hyperalgesia of Fibromyalgia Patients
Conditions: Fibromyalgia
Interventions: Drug: Milnacipran
Qigong Exercise May Benefit Patients With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Behavioural: Intervention Group; Behavioural: Placebo Comparator: Control Group
Effect of Temperature on Pain and Brown Adipose Activity in Fibromyalgia
Conditions: Fibromyalgia, Pain
Interventions:
Effect of Milnacipran in Patients With Fibromyalgia
Conditions: Fibromyalgia
Interventions: Drug: Minalcipran; Drug: Placebo
The Pathogenesis of Idiopathic Dry Eyes
Conditions: Dry Eye, Fibromyalgia
Interventions:
Evaluation and Diagnosis of People With Pain and Fatigue Syndromes
Conditions: Fatigue; Fibromyalgia; Pain; Complex Regional Pain Syndrome; Reflex Sympathetic Dystrophy
Interventions:
The Functional Neuroanatomy of Catastrophizing: an fMRI Study
Conditions: Fibromyalgia
Interventions: Behavioural: Cognitive Behavioural Therapy; Behavioural: Education
A Placebo-Controlled Trial of Pregabalin (Lyrica) for Irritable Bowel Syndrome
Conditions: Irritable Bowel Syndrome
Interventions: Drug: Pregabalin (Lyrica); Drug: Placebo
Riding the Wave – Part 1
Have a positive attitude!
How many times have we heard that one?
While our emotions cannot cause FM, they no doubt affect our symptoms. But how can we maintain good thoughts when we feel so lousy? This challenge, of course, does not exclusively affect FM patients, but to any time when things do not go as we wish. But in our case, seeing the positive presents a continuous struggle.
Yet our moods are not necessarily in tune with our physical state. You can probably recall times that despite much pain or fatigue, you were able to cope and even achieve high spirits. Perhaps the weather was perfect, good friends visited, you just accomplished something or helped somebody, making you feel good about yourself. Other times, depression seems to take hold even when our physical discomfort is at a manageable level. Why is this? Answering this question is the key to finding optimism.
FM can feel like a swim in the ocean – sometimes it is dark, grey and turbulent, and it seems you have fallen and the waves continue to crash over you, as you struggle to rise, only to be knocked down yet again. But that same ocean sometimes allows us to find a wave we can ride smoothly to the shore.
What can we do when we feel under the waves? How can we find the strength to climb back on top, and the patience to know that we will?
There are 10 cognitive exercises you can use to maintain a positive attitude. So I don’t overload you, today I will only present 4 and the remaining exercises will continue in tomorrow’s post.
1. Expect bumps!
It is important to acknowledge that we will sometimes feel down. Who wouldn’t in our condition? But by expecting rather than dreading down time, such periods become more tolerable. In addition, recognizing that we will have blue periods helps keep them in perspective. You will be able to say to yourself, “I was depressed before, and got out of it; this time, too, it will pass.” It is easy to forget that before our illness, there were times we felt down. Now these periods are wrapped up in our medical problems; but everyone gets depressed some of the time. After accepting that you will sometimes feel sad, and even experience self-pity, you can concentrate on ways to shorten these periods and make them fewer and farther between.
2. Track the changes.
Keeping track of moods helps put ups and downs into perspective. During your best times, make a conscious attempt to capture the feeling. Leave notes on your wall attesting to the way you feel. Living with FM easily creates a Jekyll-and-Hyde persona, where your optimistic self and your flare-up self may as well be two different people. When we feel bad, it becomes quite difficult to imagine that things can be otherwise.
Similarly, during times of improvement, it’s amazing how quickly we may forget how bad a previous period was, making subsequent flare-ups not only intolerable but shocking. Counting and measuring the duration of the bad times – as well as the good ones – can put them into perspective. It may be that over time, our worst occurs about once a month, although it feels much more frequent. This knowledge is empowering, because we can remind ourselves that a bad flare is, for example, our monthly temporary setback, and find ways to ride it out until our baseline returns.
3. Stock-pile fun distractions.
What things make you happy? We all need to keep lists of the things that make us happy. One of the cruelties of our condition is that when we need distractions most, we are least equipped to seek them out. For this reason it is important to compile a list of your favourite activities when you are feeling optimistic to be used when you most need them.
People with FM often describe how even their worst pain can be put on a back burner, so to speak, when they become engrossed in an activity. This is not only a psychological but a physiological response: your brains can only process so much input at once. When you are engrossed in a beautiful movie, talking to a good friend on the phone, or listening to your favourite music while lying on a heating pad or in the bathtub, you can trick your pain receptors into leaving you alone!
4. Shape your perspective.
Is the glass half empty or half full?
Perspective determines, quite literally, how you view the world.
In Western culture, much emphasis is placed on independence, individualism, and achievement. Through this lens, developing a condition that makes us feel dependent and less productive is likely to be a huge disappointment. You are forced to adapt to a sudden, new condition by adopting a perspective that accommodates change. Your perspective is shaped by the comparisons you make and the expectations you create.
Consider, for example, the immigrant who had been practicing medicine in his home country, but flees to the US to escape a repressive political regime. Here he works as a janitor; after years of medical study, he has lost a prestigious and rewarding occupation. Yet he is thankful for the opportunity to work and wakes each day driven by hope, perhaps, of a better future for his children. Yet his difficulties are also quite apparent. What keeps his spirits up and makes him thankful rather than bitter? His perspective.
…to be continued tomorrow…
A No-Win Situation
Many of us suffer from depression, as well as FM. But did you suffer from this horrible black dog before you developed FM, or after?
You’ve heard people complain that they’re depressed after a breakup, a layoff, or an overall terrible week. But are these people really experiencing depression? Are you really depressed?
When a stressful situation is particularly hard to cope with, we react with symptoms of sadness, fear, or even hopelessness — a type of reaction that’s often referred to as situational depression. Unlike major depression, when you are overwhelmed by depression symptoms for a long time, situational depression usually goes away once you have adapted to your new situation.
The problem for a lot of us is that FM is not going away – we can only manage it, so we need to adapt to our new situations as soon as we can.
In fact, situational depression is usually considered an adjustment disorder rather than true depression. But that doesn’t mean it should be ignored: If situational depression goes untreated, it could develop into major depression.
“Situational depression means that the symptoms are set off by some set of circumstances or event. It could lead to major depression or simply be a period of grief,” explains Kathleen Franco, MD, professor of medicine and psychiatry at Cleveland Clinic Lerner College of Medicine in Ohio. However, she adds that situational depression may need treatment “if emotional and behavioural symptoms reduce normal functioning in social or occupational arenas.”
Who Gets Situational Depression and Why?
Situational depression is common and can happen to anyone — about 10 per cent of adults and up to 30 per cent of adolescents experience this condition at some point. Men and women are affected equally.
The most common cause of situational depression is stress. Some typical events that lead to it include:
- Loss of a relationship
- Loss of a job
- Loss of a loved one
- Serious illness (hello? anyone recognising themselves here?)
- Experiencing a traumatic event such as a disaster, crime, or accident
What Are the Symptoms of Situational Depression?
The most common symptoms of situational depression are depressed mood, tearfulness, and feelings of hopelessness. Some other symptoms include:
Feeling nervous- Having body symptoms such as headache, stomach ache, or heart palpitations
- Missing work, school, or social activities
- Changes in sleeping or eating habits
- Feeling tired
- Abusing alcohol or drugs
How Is Situational Depression Diagnosed and Treated?
A diagnosis of situational depression, or adjustment disorder with depressed mood, is made when symptoms of depression occur within three months of a stress-causing event; are more severe than expected; or interfere with normal functioning. Your doctor may do tests to rule out other physical illnesses, and you may need a psychological evaluation to make sure you are not suffering from a more serious condition such as post-traumatic stress disorder or a more serious type of depression.
The best treatment for situational depression is counselling with a mental health professional. The goal of treatment is to help you cope with your stress and get back to normal. Support groups are often helpful. In some cases, you may need medication to help control anxiety or for trouble sleeping.
Situational depression and other types of depression are a common problem today, notes James C. Overholser, PhD, professor of psychology at Case Western Reserve University in Cleveland. “Many people are struggling with social isolation, financial limitations, or chronic health problems,” says Dr Overholser. “A psychologist is much more likely to view depression as a reaction to negative life events. Many people can overcome their depression by making changes in their attitudes, their daily behaviours, and their interpersonal functioning.”
If you have (or think you have) situational depression, you should know that most people get completely better within about six months after the stressful event. However, it is important to get help, because situational depression can lead to a more severe type of depression or substance abuse if untreated. For many people with situational depression, the coping skills they learn in treatment can become valuable tools to help them face the future.
Doctor: Fibro? No, You Have a Mental Disorder!
Do you:
- have a disproportionate thoughts about the seriousness of your symptom(s)?
- have a high level of anxiety about your symptoms or health?
- Devote excessive time and energy to your symptoms or health concerns?
Almost everyone who has FM has had at least one of these reactions – especially during the time before you get an accurate diagnosis. It would be unusual not to have serious concerns about your health when you’re experiencing symptoms severe enough to disrupt your daily life and you don’t know what is causing them.
Well, guess what? You might have a mental disorder, according to the soon to be released 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), commonly known as the DSM-5.
The DSM is published by the American Psychiatric Association and is the standard classification of mental disorders. It includes the diagnostic codes, a set of diagnostic criteria and additional information on each disorder.
The problem with the DSM-5 is there is a new diagnostic category called “Somatic Symptom Disorder.” According to the diagnostic criteria, a person can be diagnosed with Somatic Symptom Disorder (SSD) if for at least six months, they have had one or more symptoms that are distressing and/or disruptive to their daily life, and they have one of above listed reactions.
According to these criteria, 1 in 6 people with cancer and heart disease; 1 in 4 with irritable bowel and FM; and 1 in 14 who are not even medically ill, will be diagnosed with SSD. Are you kidding me?!?
For us, this could mean that if any one doctor at any point in time feels like you’re a little too concerned about your symptoms or your health, he/she can diagnose you with SSD and you will forever after be labelled as having a mental disorder. And once you have that label, how seriously do you think other doctors are going to take your symptoms? How much time do you think doctors will spend trying to identify the physical cause of your pain if they think you have a mental disorder that makes you overly concerned about your health?
Dr Allen Frances
DSM-5 is about to go to the printers and is scheduled to be released in May 2013 – Our best hope is through Allen Frances, MD, who was the chair of the DSM-4 Task Force. Dr Frances suggested simple wording changes in the DSM 5 definition of SSD that would have tightened it significantly and reduced confusion at the difficult boundary between medical and mental illness.
His proposed new criteria set would have made it much clearer that the person’s concern about physical symptoms had to be ‘excessive’, ‘maladaptive’, ‘pervasive’, ‘persistent’, ‘intrusive’, ‘extremely anxiety provoking’, ‘disproportionate’, and ‘consuming enough time to cause significant disruption and impairment in daily life’. He has written an excellent article in Psychology Today on the dangers of adding SSD to the DSM-5: Mislabeling Medical Illness As Mental Disorder.
We need to get the press, insurance companies, and our elected officials involved in this issue. If Dr Frances can show the press that thousands of people are reading and commenting on his articles, the press may be persuaded to take an interest in this issue.
Elected officials and insurance companies may take an interest if they can be made to see that a diagnosis of SSD will lead to added Medicare, Medicaid, and health insurance costs in the form of unneeded therapy and psychotropic drugs. In addition, this misdiagnosis raises the risk that underlying physical causes of an illness will be ignored and this may lead to an illness going undiagnosed until the point when treatment will result in even more costly medical care. This will drive up health care costs for both government and insurance companies.
If you want to get involved, here’s what you can do: share this article with others; contact members of the press (especially medical reporters such as Drs Sanjay Gupta or Nancy Snyderman); and contact your elected officials. I encourage you to click on the link to his article, make a brief comment, tweet his article and/or share it on Facebook, to support his stand. The more page views and comments he has, the better his chance of persuading the editors of the DSM-5 to make a last-minute change.
Dr David Kupfer – Task Force Chair
Dr Joel Dimsdale – Head of the Somatic Symptom Disorders Work Group.
Additionally, you can contact Dr David J. Kupfer – the Task Force Chair at kupferdj@upmc.edu. Dr Joel E. Dimsdale – head of the Somatic Symptom Disorders Work Group – can be contacted at jdimsdale@ucsd.edu.
Related articles
- DSM-5 rejects call for urgent reconsideration of new “Somatic Symptom Disorder” category (dxrevisionwatch.com
- Your Physical Illness May Now Be Labeled a Mental Disorder
- DSM-5 rejects call for urgent reconsideration of new “Somatic Symptom Disorder” category
- Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder
- Fibromyalgia in Danger of Being Labeled a Mental Disorder
We Cope, Not Hope (results)
Disease as an adverse interruption of life is the prevalent interpretation of chronic pain conditions. But there are different ways to cope with pain, and there are different ways to regulate emotions associated with chronic diseases. Because most patients with chronic conditions are unable to ‘solve’ our persisting pain by ourselves (in terms of recovery or repair) and to find distance to negative emotions associated with pain, we have to find strategies to adapt to a long-lasting course of illness.
We have to find ways to maintain physical, emotional and spiritual health in spite of often long-lasting courses. Thus, our coping with chronic pain is an ongoing process which includes appraisals of stress, cognitive, behavioural, and emotional coping responses, and subsequent reappraisals of stress.
One of the most frequently used concept on adaptation strategies for patients with chronic pain diseases differentiates active and passive coping:
- Active coping (i.e., problem solving, including collecting information and refocusing on the problem, or regulation of emotion by focusing attention on the emotional response aroused by the stressor) is associated with less pain, less depression, less functional impairment, and higher general self-efficacy;
- Passive coping (i.e., avoidance and escape) is correlated with reports of greater depression, greater pain and flare-up activity, greater functional impairment, and lower general self-efficacy.
Although the importance of decreasing maladaptive and encouraging adaptive coping responses is emphasized by innovative treatment programs for chronic pain (if you can get in!), one nevertheless has to ask which adaptive coping strategies were of relevance for the patients.
I asked the same question of you: Which of the following coping strategies best describes the way you cope with your chronic pain?
The answers (so you don’t have to return to the poll) were:
- Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
- Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medication, follow advice of medical practitioners, full confidence in doctors and therapists).
- Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
- Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
- Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
- Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
- Escape from illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day)
The study, which started all of this, had 579 participants – we had 239 (not too bad). The study also asked demographic type questions but I decided not to make it too long a poll so we could have more answers.
From highest reliance to lowest here are the results from both the study and our poll:
We (as a group) seem to be much more aggressive, active participants in the search for sufficient condition management.
Most study patients tended to externalize the process of disease management, i.e., the chronic pain disease was regarded as an adverse interruption of life, and patients called experts for help (i.e., medical doctors or therapists), and followed their advice or relied on the effects of prescribed remedies, which alone is a rather passive strategy. However, if you add (internal) cognitive-behavioural changes (i.e., patients may change distinct aspects of their life, try to become more consciously, healthy, physically fit, use distinct diets etc) or try to think positive (resolve cumbering situations of past, realize shelved dreams and wishes etc.) – both are active strategies.
In face of an insufficient manageability of chronic pain, some patients may call upon ‘more powerful’ external others (i.e., Trust in Divine Help), because the conventional resources of help seem to be (subjectively) exhausted.
In general, both groups relied on external powerful sources to control their disease (i.e., Trust in Medical Help; Search for Information and Alternative Help), but also on internal powers and virtues (i.e., Conscious Way of Living; Positive Attitudes).
In contrast, Trust in Divine Help as an external transcendent source and Reappraisal: Illness as Chance as an internal (cognitive) strategy were valued moderately.
Escape from Illness (which is not regarded as an adaptive coping strategy) was highly associated with depressive disorders.
The researchers came to the conclusion that to restore a sense of self-control over pain as well as the conviction that you are not necessarily disabled by disease and that pain is not necessarily a sign of damage is a major task in patient care. Changing negative/maladaptive illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life.
Apart from effective pain management, a comprehensive approach is needed which enhances the psycho-spiritual well-being, i.e. self-awareness, coping and adjusting effectively with stress, relationships, sense of faith, sense of empowerment and confidence, and living with meaning and hope.
Further studies are required (of course!), particularly longitudinal studies to measure changes in the weighting of adaptive coping strategies and interpretations of disease with respect to pain intensity, and comprehensive intervention programs.
F.Y.I. – The utilization of the different adaptive coping strategies did not significantly differ with respect to gender, while the educational level had a small impact on Trust in Medical Help, which was the highest in patients with a lower educational level. Age had a significant impact on Trust in Divine Help, Trust in Medical Help and Conscious Way of Living. The duration of the condition had no significant impact on the adaptive coping strategies.
An obvious result showed that patients from the outpatient clinic had significantly higher scores for Trust in Medical Help and Escape from Illness than patients from the rehabilitation clinic or patients attending the mind-body program, and were also in Search for Information and Alternative Help. This may indicate higher need for external help.
Related articles
- Coping vs Hoping (fibromodem.wordpress.com)
- Chronic Counsel (fibromodem.wordpress.com)
- Half of us with chronic pain do not seek help from a GP (mirror.co.uk)
Abracadabra Update
So, I haven’t told you about any of the after-effects of the infusion because I’m still trying to work it out.
My headaches seem to have improved, which is fabulous, and not just because I am not allowed to take anything stronger than aspirin.
Mommy (and others) say I look better (not just the ‘you don’t look sick’ look better) – the dead look in my eyes and sallowness of my skin has supposedly disappeared (I can’t see it myself).
The fibro fog has lifted. Everything is clearer – now I very aware of when I can’t find the right word. I really don’t know if that’s better or not.
I feel like I have a lot more energy. The problem is that I don’t, so I have to re-learn the whole pacing thing, in line with my different pain and fatigue levels.
My pain is different to what it was before – it is not there all the time anymore, but when it does appear, it seems stronger; and I never know when it’s going to appear, so it is just as unreliable.
Oh, and ‘my hit by a bus’ feeling each morning upon waking has NOT gone away – in fact, sometimes (and I think today is one of those times) it is worse!
The time it takes to become totally exhausted has been lengthened but there seems to be less onset time.
Essentially, I don’t think I can tell you how it all is until I adjust to my new learning curve. EXCEPT my pain specialist has suggested we do it all again (not at the same hospital so no chance of the same nurses!) in a couple of months. He seems to think there may be a cumulative effect to the ketamine.
I can’t even think about that yet!
Not What I Was Expecting
So, I’m here. Arrived. Gave details. Got poked. My private health insurance has me in a 4-bed room (no singles available). I don’t think I’m going to like this…
Have had a very up and down day…
Procedurally, I started with 5mls ketamine per hour (for those who have any idea what I’m talking about) and my vitals (blood pressure, temperature and heart rate) being taken every half an hour. Four hours later, ketamine was increased to 10 mls, with my vitals being taken every half hour for two hours, decreasing to once every hour.
Physically, I started feeling heavy and tired after about 2 hours. I went to sleep after lunch. While I was sleeping, the nurses kept taking all the vitals and other things happened around me; but it was like an old film that had been spliced and put together again in the wrong order: I had no idea what was happening, what was real, what was a dream. And, in my head, I was screaming I don’t like this!
So, with what felt like a lot of effort, I sat up in bed and looked around for a bit. I am very glad that I brought my travel clock with me…I looked at the clock at 2:52pm, looked over at the window and started to think: what a nice day out there…very bright light…oh, my eyes hurt…hmm, does anything else hurt?…my head has a dull ache…my face feels like it did when I had the filler in Bali…<blank space in my head>….should I tell a nurse?…I would have to reach over and get the button thing…is it bad?…check eyes…<more blank space>…what else…head…lips…can the other ladies see my fat lips…I have to move…stop staring at the other ladies…this doesn’t feel good…does it feel bad?….<blank space>…feel very strange…is this tripping?…people drive cars like this…how do people drive cars like this…I don’t like this feeling… and then it is 2:57pm. I’m trying my best to explain how it felt for you – it was very intense and thoughts just kept being thrown at me and I had to acknowledge every single one (sort of like an endless tennis machine shooting tennis balls at you) – does that make sense to you?
So, I don’t like the feeling and I start to cry – not huge giant sobs or anything, just face leakage again… – for 3 hours (the nurse said that can happen).
But I guess my body had gotten used to it now because I’m feeling quite normal, just slower than my normal. So I figured I’d write a post and let you into my hospital room at 11pm - All women. All over 70. All asleep…except me!
My dosage will be increased again at 3:30am and I’ll be back to the half hourly vitals check so I guess I’ll be awake most of the night.
Hope this gets better…
P.S. The internet situation is pretty dire here so you can’t even have any pictures!
You’ve Got Mail (Fibro Reminder)
Wake up
Receive wonderful text message from colleague (who read Scary With You is Better Than Scary Without You) full of support
Gotta email him
Check personal Facebook page
Check Fibromyalgia Awareness Day Facebook page
Answer questions and comments
Gotta email him
Check Twitter
Upload all competition entries to Pinterest
Read 56 e-mails
Answer emails
Gotta email him
Finally received email from Photoscramble
Spend 1.5 hours making and cropping screen shots, and trying to make the competition’s problems understood, then follow the short instructions passed to me
Clear browser cache (as instructed) – didn’t help anything except now I can’t get into the FibroModem Fibro Forum (so don’t be looking for me, there)
Fill shop order and walk to post office
Still haven’t emailed my colleague – getting very anxious → too much to do
Return, exhausted, to filthy house → too much stuff EVERYWHERE – really losing it now
32 more emails received while I was out?
Tidy kitchen
Make two comments on Forumotion Forum so I can have permission to ask how to get back into the Forum
Put on load of washing
Gotta email him
Tidy (sort of) bedroom → can’t calm myself down
Close door to spare room – way too much to do in there → can’t even look at it!
Prepared new page for blog to promote competition entries
Feeling extremely stressed out – really no reason to be stressed, I have nothing planned tomorrow at all. I can do all of this tomorrow. Too much in my head! MUST be the competition → really, really hope it all works! Too much!
Emailed colleague! (Not sure how, as I seem unable to put a full sentence together)
Related articles
- Announcing…FibroModem Fibro Forum (fibromodem.wordpress.com)
- Feeling Fibro Fotos TODAY! (fibromodem.wordpress.com)
- Feeling (VERY) Fibro (Fotos Competition) (fibromodem.wordpress.com)
Wiggle It (Just a Little Bit)
Belly dancing was one of the first forms of exercise. Belly dance is found all over the Near East, including Egypt, Morocco, Lebanon, Greece, and Turkey.
Belly dance (also known as Middle Eastern dance, Danse Orientale, Raqs Sharki, Ciftetelli, Rakkase, Danse du Ventre) is a celebration of a woman’s body. It is a unique style of world dance that intertwines improvisation originating from ancient folk and gypsy movements with trained professional choreography originating in the harems.
There is no definite origin of belly dance, but one can see traditional associations with many fertility rituals of the ancient world and the dances in the ancient Indian temples. The fertility rituals were meant to celebrate the reproductive aspects of life, both human and in nature. The movements developed into being used by female only groups for strengthening muscles and spirit for birthing. In this sense, the dance was seen as a private, sacred art. The undulating movements strengthen muscles and breathing techniques, making it easier to control your body.
The common people and travelling gypsy groups later performed belly dance movements on the street (the higher class did not dance in public). Eventually this moved into the harems, where beautiful slaves and dancing-girls learned to entertain their host. With harem girls began sophisticated dance and music training, incorporating choreography and “props”, and the dance was also taught to the higher-class female family members, who also lived and were educated in the harems.
So, it’s kinda weird that it was researchers in Brazil who found that, after beginning a belly dance program, FM sufferers reported reduced pain and improved functional capacity, quality of life and self-image.
Researchers studied 80 women with FM (the rest were doing the Samba! Lol!) who were randomly assigned to either a dance group or control group. The dance group participated in 1-hour belly dance classes twice a week for 16 weeks, with movements involving the upper limbs, scapular girdle, trunk and hips. A masked physiotherapist evaluated pain assessment, functional capacity, quality of life, depression, anxiety and self-image at the beginning, 16 weeks and 32 weeks.
The dancing FMers significantly improved from baseline to 32 weeks in pain, emotional aspects and mental health scales.
Health benefits of Belly Dancing (not just for FM sufferers)
- Stress reduction
Belly dancing requires tremendous relaxation and concentration, as you must focus on isolating various parts of your body. The flowing movements of belly dance help to calm and soothe the mind. The repetitive movements of the dance and the concentration needed to do them can help a mind filled with daily stress to “let go” for a while and relax. It’s hard to worry about deadlines at work when you are thinking about getting that next drop just right, or while making sure that you are in time with the music.
One effect of stress is that our bodies tense up, causing contractions or spasms in muscle groups, such as those in the neck, shoulders, or back. Belly dance, on the other hand, gently stretches and uses these vulnerable muscle groups, and as they are utilized, blood flow increases and lactic acid is flushed away. Stressed muscles relax as they are gently exercised, relieving the “clenched” muscles often seen in FM sufferers. The body becomes supple and limber, and practitioners frequently report that pain diminishes in the back and neck areas.
- Fitness and Muscle Building
Belly dancing is vigorous and will make you break a sweat. The fast movements of the hips and shoulders are enough to really get your heart pumping, offering tremendous cardiovascular benefits. When performed as exercise, belly dancing can be compared to any other aerobic workout.
Belly dancing is also a wonderful way to strengthen the major muscles of your body. When performed correctly, belly dancing can also stretch and release tension in the back. Because it is a low-impact form of exercise, belly dancing won’t jolt or jar your body.
- Weight loss
Belly dancing can have a positive impact on your weight, improving your self-image. If performed regularly, belly dancing can actually encourage weight loss, as it burns calories as well as increases your metabolic rate. According to Dr. Carolle Jean-Murat, M.D., belly dance can burn up to 300 calories per hour. This estimate will vary, of course, depending on the intensity of your dancing.
Belly dancers come in a variety of body types and sizes. Belly dancing will make you more aware of your posture, grace, body language and facial expressions, all helping to improve your self-image. 
If you attend a belly dancing class, you will probably see several different sizes of bodies, all just as beautiful as the others.
- An Internal Massage
Belly dancing can be very beneficial to the health of your internal organs. It is sometimes said that belly dancing was developed as a way to prepare the body for childbirth. Since belly dancing centres around controlling the muscles of the abdomen, it may make carrying and delivering a baby easier on your body. For women who desire natural childbirth, this form of exercise through dance, with its emphasis on muscle control not only facilitates natural childbirth, but also makes an excellent post-natal exercise that helps encourage abdominal tone.
Also, many women notice that belly dancing helps to relieve menstrual cramping.
Belly dance seems like a fun, healthy way to exercise. As we are continually being told, exercise is important in the treatment of FM. The Brazilian researchers concluded, “Patient education regarding how to initiate and continue exercise is crucial to the success of treatment. … Belly dance leads to improvement in pain, sleep pattern, functional capacity and self-image in patients with fibromyalgia. [It is] a safe, effective therapeutic strategy for women with fibromyalgia.” It can be a creative outlet that conditions, tones, and allows a woman to tune into the natural movements of her body. It can refresh, relax, and/or exhilarate. So why wait?
Caution: Many doctors have suggested belly dancing classes as part of rehabilitation from injury; it is, however, important to check with your own medical provider before starting any new form of exercise.
Related articles
- Is Belly dance the answer to fibromyalgia pain? New scientific study. (jadebellydance.com)
- Belly Dance – the Uncommon Male (kindshipincolorandwool.typepad.com)
Scary With You is Better Than Scary Without You
Some-one wrote that I was incredibly honest, shamelessly honest. But right now, I’m about to be shamefully honest – I am full of shame for how I am feeling about the topic that I am choosing to write about today.
I have fibromyalgia (you know that) and, before that, I suffered with 3 years of debilitating depression. It has been a VERY long time since I have felt good, alive, normal. I can’t remember what it feels like to fully enjoy life; and I definitely have no idea how to enjoy life as a grown-up.
Before all of this, I worked on a cruise ship so life was just one big party – now, I’m supposed to be an adult with a career in law. And, I don’t know how to be that kind of normal.
So here comes the shameful part: I’m scared of getting better!
I’ve felt bad for so long, and I don’t know who I am without being sick. It’s almost like a screwed-up safety blanket. In the state I’m in now, I don’t need to deal with real life; I can hide away in the darkness of my bedroom; I can put my head in the sand; and pretend that nothing is going on around me.
And I’ve gotten used to sleeping when my body tells me to (not an alarm clock), spending lots of quality time with my Mommy, meeting my whole neighbourhood.
Doesn’t that sound awful?
In between the depression and FM, I had a short period where I think life was normal (although I was already feeling unexplained pain, fatigue and sensitivities) so I might just be afraid that, if I get better, it won’t stay that way.
I guess what I’m trying to say is I don’t know what to do when I start feeling better, if I start feeling better. It’s terrifying and I don’t understand that. I should want to get better with my whole heart and, in some ways, I don’t.
During this time, I have found I have very few friends, very few people I can depend upon (although a couple of surprises have popped up) and I’m petrified that I will doubt future relationships forever (whereas, right now, it feels like I won’t even make those relationships).
I’m worried that I won’t be able to continue where I left off with my career – I was already an old first-year lawyer; now I’m an even older first-year lawyer, who may not remember anything she learned during her 6 years of study.
I’m scared that I will never get out of this hole of debt that I have accumulated while being sick – but, if I stay sick, I have an excuse.
I’m frightened that I can’t handle normal life – with work, make-up, driving, washing, cleaning, paying bills, social obligations, continuing professional development…oh, and the list just goes on.
I’ve lost SO MUCH time and I feel VERY sad about that.
What we go through each and every day is horrible, but after so long, it becomes normal… And while it seems ridiculous to be afraid of getting better, it may (probably!) just be a fear of change…It doesn’t seem right to feel this way, but I do.
BUT I really don’t have a choice… I have to try to get well and I’m scared.
