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

Exciting Toxins

According to a new study in Clinical and Experimental Rheumatology, monosodium glutamate (MSG) in food may exacerbate our symptoms.

It was only a small study of 37 people: it included women with FM and IBS. Participants first avoided MSG and other excitotoxins (see below,) such as aspartame. Thirty one of the participants said that their symptom load was reduced by more than 30%.

Next, participants were given either orange juice with added MSG or plain juice (as a placebo,) three days a week, for two weeks. Those getting the MSG had a significant return of symptoms when compared to those who didn’t.

MSG also appeared to decrease quality of life when it came to IBS symptoms, and symptoms such as watery stools and abdominal bloating were higher in the MSG group.

Researchers recommend further exploration of what could be a relatively simple and low-cost, non-drug method of alleviating symptoms.

Avoiding Excitotoxins

It can be tough to avoid excitotoxins in your diet. Aspartame is an artificial sweetener used in a wealth of products. It goes by the brand names Equal, NutraSweet, AminoSweet, etc. but should always be listed as aspartame in the ingredients list. Check your ‘diet’ products closely.

MSG is harder to identify and avoid, as it lurks in dozens of ingredients. The organization Truth in Labelling has a list of ingredients that do or may contain MSG: List of Ingredients Containing MSG.

Related articles

• Aspartame: the Controversy! (outoftheboxremedies.net)
• Aspartame Can Kill You (healthupdates4u.wordpress.com)
• ASPARTAME…What Is It and Is It Good For You???? (coalitionofpositiveenergy.com)

 

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)

 

Good Night, Sweet Prince

Given that us FM fighters battle sleep disruption, pain and a number of other stressful symptoms, you may be wondering what impact this is having on your immune system. Potentially, all this stress on our bodies can drag down a person’s immune system (among other things).

In a study, Ines Kaufmann, M.D. and co-workers in Munich, Germany compared 22 FM patients with 22 age and gender-matched healthy control subjects, Kaufmann found a significant reduction in two immune system markers.

Both of the markers are called adhesion molecules because they stick to the surface of the white blood cells that circulate as part of our immune system. These adhesion molecules work like a GPS to get your white blood cells to travel to places in the body where they need them, such as tissue injury sites. They also are involved in recognising and destroying infectious organisms, as well as removing toxic substances and debris from the body.

A lower number of adhesion molecules on the surface of your white blood cells means that the white blood cells are travelling without a map and can’t get to where they are actually needed. This could lead to a compromised immune system, one that lags in its ability to get rid of infections and clear up inflammation in the tissues.

Consequently, you may have a more difficult time getting over colds or flu-bugs that commonly occur during the winter months.

Besides lowering your ability to fend off infections, a decline in adhesion molecules on your white blood cells may also compound your painful symptoms. These molecules also play a role in triggering your white blood cells to release powerful opioid-like pain relievers in the muscles and other tissues where local injury may easily occur.

While the reduction in adhesion molecules may explain why you have trouble getting rid of infections and why the slightest injury produces more pain than it should for you, these defects in cannot identify people specifically with FM – Kaufmann’s team has reported similar findings in people with complex regional pain syndrome.

This means that additional studies are needed to determine the relationship between the immune system changes and the development and persistence of painful conditions.

BUT, if you find yourself trapped with a head cold, flu, or other infection that lingers on and on, all they can offer us for now is the advice to increase your sleep time to help power up your immune system. (Wouldn’t we love to?)

 

Surprise Posting

My head is not working right at the moment. I was totally prepared for this and had a number of pre-prepared posts (…and here’s one I prepared earlier) ready to publish. I even had one for today BUT this wasn’t it.

One of the doctors in the hospital (who didn’t know me from a bar of soap) said that my blog was a sign of maladaptive behaviour. Firstly, I am not exactly sure what this is but it sounds bad. Next, he wants me to change my anti-depressant by going to a new psychiatrist. He also wants me to see a new psychologist (despite the fact that I have been happy with the one I have had for 5 years now; and that I thought I was doing pretty well and hadn’t been to see her in quite a while (ok, I have no idea how long it has been!)) I won’t be seeing a new psychologist, although I think I will drop in to see my ‘old’ one to check on this maladaptive behaviour.

So back to that…this had me thinking and I started to go back and read some of my old posts. I came across ‘Waking Up with Debbie Downer’ (written in May of this year) which I am re-blogging because it sort of sums up my mood right now:

Guess what? I woke up this morning – that’s all I can say without getting negative; and even that can be taken in a negative light. I was going to write wonderful, positive things about home treatment but my mean-spirited voice kept adding in asides.

As such, on the left is the post I was intending to write (when I went to sleep last night) and on the right is the Debbie Downer digressions. Do NOT read the right-hand side if you’re feeling horrible!

Although fibromyalgia is a

chronic condition, there is

much you can do to relieve

and control your symptoms.                    Yeah, right!

Taking control and becoming

involved in your own

treatment is the most

important part of treating

fibromyalgia. There are many

things you can do:
♥ Exercise regularly. Of all                    Regularly? Does that

the treatments for                                  mean when I’m 

fibromyalgia, cardio-                              regularly feeling well?

vascular (aerobic)                                   Or when I’m feeling

exercise may have the                            like I regularly do?

most benefit in reducing                        (which means I really

pain and other symptoms                      don’t feel like 

and in improving your                            exercising!)

overall condition. Work                          And who is going to

with a physical therapist                        provide the money for 

or other professional                              this professional help?

who has expertise with

fibromyalgia to build an

exercise program that

works for you.

And then stay with it.

♥ Improve sleep. Sleep                          Oh, really? Because I

disturbances seem to                              haven’t been trying to

both cause and result                             do that already?

from some of the other                           Because I really enjoy

symptoms of FM,                                     waking up feeling this

such as pain. Learn good                        bad? Because I love

sleep habits. And try to                           feeling this tired all

get enough sleep each                            the time?

night.

♥ Relieve pain. Heat therapy,                   Anyone got a

massage, gentle exercise,                       battery operated heat

and short-term use of non-                    suit?

prescription pain relievers                      My chemist already

may be helpful.                                       believes that I am

                                                                   running some kind of

                                                                   lab from the basement

                                                                  of my house!

♥ Reduce stress.                                       Have you been in my 

                                                                   life?

♥ Learn about fibromyalgia.                    Control is merely a 

The more you know, the                           figment of the

more control you will                                imagination!

have over your symptoms.                        Even at my most

People who feel more in                           positive, I know that I

control also tend to be                              am just running

more active and report                             (figuratively) from FM.

less pain and other

symptoms.

♥ Learn ways to manage                         If I could do that, I

your memory problems.                            wouldn’t have memory

Feeling as though you                               problems!

are not thinking clearly

increases stress and can

make memory problems

worse. Simple things like                            But where did I put

writing yourself notes                                 that note? And what

can help you feel more                               did I mean when I

in control.                                                    wrote SHARE?

♥ Adopt a good-health                               Even I’m speechless

attitude, along with these                          for this one (and I

other healthy habits. It’s                            wrote the stupid

hard to stay positive when                        sentence)!

you don’t feel well. But a

good attitude helps you

focus less on your

challenges and feel more

healthy.

The best results occur when                       No-one can say that I

you take an active, committed                   haven’t been taking

role in your own treatment.                        an active, committed

You may need to adjust your                      role in my own

lifestyle to fit home treatment,                  treatment – and this is

especially regular exercise,                       the BEST I can come up

into your daily routine. It may                    with? I’m going back

take time to find an approach                    to bed!

that works for you. Try to be

patient. And keep in mind that

consistent home treatment

usually can help relieve or

control symptoms of

fibromyalgia.

All expletives (and there were many) have been erased!

Hmmm, which way are you leaning today?

 

***Maybe I should make that appointment with my psychologist on Monday!

 

(Not) Just Kidding!

Medical evidence reports that juvenile FM affects 2% to 7% of school age children. Similar to adult cases, the juvenile form of the disorder primarily strikes females. Previous studies have shown that juvenile fibromyalgia patients are burdened with substantial physical, school, social and emotional impairments. However, studies for the treatment of the juvenile form have been limited.

A recent trial shows cognitive-behavioral therapy (CBT) reduces functional disability and depressive symptoms in adolescents with FM. The psychological intervention was found to be safe and effective, and proved to be superior to disease management education.

CBT is a form of talk therapy that helps people identify and develop skills to change negative thoughts and behaviours. CBT says that individuals — not outside situations and events — create their own experiences, pain included. And by changing their negative thoughts and behaviours, people can change their awareness of pain and develop better coping skills, even if the actual level of pain stays the same.

This trial, led by Dr. Susmita Kashikar-Zuck from the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center in Ohio, investigators recruited 114 adolescents between 11 – 18 years of age who were diagnosed with juvenile FM. The trial was conducted at four paediatric rheumatology centres, with participants randomized to cognitive-behavioral therapy or fibromyalgia education, receiving eight weekly individual therapy sessions and two additional sessions in the six months following the end of active therapy.

Both groups displayed significant reduction in functional disability, pain, and depressive symptoms at the end of the trial; however, participants in the cognitive-behavioural therapy group reported a significantly greater reduction in functional disability compared to those receiving fibromyalgia education.

“Our trial confirms that cognitive-behavioural therapy is a safe and effective treatment for reducing functional disability and depression in patients with juvenile fibromyalgia,” concludes Dr. Kashikar-Zuck. “When added to standard medical care, cognitive-behavioural therapy helps to improve daily functioning and overall wellbeing for adolescents with fibromyalgia.”

Related articles

• A bit of CBT… (telescoper.wordpress.com)
• CBT – Psychology Definition of the Week (psychology.about.com)

 

Research Mad!

Not even doctors completely understand FM.

FM is frustrating for us and doctors alike; the condition is hard to diagnose and treat – and many doctors don’t even believe it’s real.

But new research on brain chemistry, better diagnosis methods and mind-based therapies, such as cognitive behavior therapy, are changing doctors’ attitudes and offering renewed hope for relief among all of us.

“Not only are we doing a better job at educating physicians in how to diagnose fibromyalgia, but new research [also] is helping us better understand the disorder’s effects on the body,” says Stuart Silverman, M.D., a clinical professor in medicine and rheumatology at UCLA.

The studies give credibility to FM as a real syndrome, while also uncovering new ways to reduce the intensity of symptoms and cope with the ones you’ve got.

Here’s how the latest research can help us:

1. You can learn to reduce pain.

A mind-body therapy called ‘affective self-awareness’ may offer relief, according to a 2010 Providence Hospital study published in the Journal of General Internal Medicine.

In the study, 45 women with FM learned techniques – such as mindfulness meditation and writing about their feelings – to recognize and deal with emotions that could exacerbate pain. They were also encouraged to resume any exercise or activity they avoided due to discomfort. In six months, 46% had pain reduced by 30% or more.

How it may help: “We’ve learned that the hypersensitivity of nerve pathways in FM patients is a ‘learned pain,’” says Howard Schubiner, M.D., director of the Mind-Body Medicine Center at Providence Hospital in Southfield, Mich., who worked on the study. That means pain can get worse when you expect to feel it.

“We also know there’s a link between FM and stressful life events and in coping with strong emotions,” Schubiner adds.

Practicing self-awareness can help you face feelings and gain a sense of control over improving your health. Some hospitals offer seminars in mindfulness and other mind-body techniques. Ask your doctor for a referral.

2. Cognitive behavioral therapy (CBT) may ease FM symptoms.

A 2010 research review published in the Journal of Rheumatology found that CBT helps patients cope with pain, improves depressed moods and reduces the number of follow-up doctor visits.

And in a separate 2010 study, published in Arthritis Care & Research, two-thirds of high-risk FM patients who received a combination of CBT and physical therapy had “clinically significant” improvements in their well-being.

How it may help: CBT teaches people to examine and change their thinking to deal with life’s challenges. For FM patients, it may reduce depression and anxiety often triggered by symptoms.

One successful method is “reframing,” in which you learn to replace negative, hopeless thoughts with positive ones.

It can help you realize that even if you have aches today, “it doesn’t mean you’ll be in pain tomorrow too,” Silverman says. “The next few days can be better.”

3. A medication awaiting Food and Drug Administration (FDA) approval could improve sleep and reduce pain.

A 2010 University of Toronto study found that sodium oxybate, a central-nervous-system depressant produced by Jazz Pharmaceuticals, improved sleep in FM patients.

As a result, 44% of those who took it reported pain reduction of 50% or more. They also were less tired and had more energy during the day than those who took placebos. BUT while the FDA has approved sodium oxybate to treat narcolepsy, its future as a FM treatment is in doubt. Also known as gamma-hydroxybutyrate (GHB), the compound is regulated strictly because it’s often abused as a “club drug” or date rape drug.

Citing safety concerns, an advisory panel recently voted against recommending it for FM patients. The FDA is expected to make a final decision by October.

How it may help: “In people with fibromyalgia, if you can improve their sleep, data shows you can also reduce their pain,” Silverman says. “If you get a good night’s sleep you’re in a better mood. You’re thinking better.”

4. Doctors have a better way to diagnose FM.

The American College of Rheumatology (ACR) has proposed broader criteria for diagnosing FM. Previously, doctors focused solely on 18 spots on the body that feel tender and painful when touched.

“Physicians sometimes didn’t check the tender points or, if they did, they weren’t always sure how hard to press,” says Robert S. Katz, M.D., a rheumatologist and professor of medicine at Rush University Medical Center in Chicago.

Also, FM pain may fluctuate, and the tender-points test didn’t measure the effectiveness of medication.

How it may help: The ACR’s new rules include an evaluation of other symptoms, including fatigue, sleep disturbances and cognitive problems.

“The new test makes it easier for physicians to diagnose FM and begin treatment,” Katz says.

5. Certain brain activity has been linked to increased pain in FM patients.

Doctors at Massachusetts General Hospital and the University of Michigan have found a link between resting brain activity and FM pain.

In a 2010 study of 36 women, those with FM had more neural connections between various brain networks and the insular cortex, which is linked with pain processing. That higher sensitivity in the brain’s “pain matrix” can help explain FM symptoms, Silverman says.

“If you lightly tap your thumb, this area of the brain would hardly register anything if you don’t have FM,” he says. “For those with FM, this part of the brain lights up like a Christmas tree.”

How it may help: The study provides more evidence that FM patients have different brain physiology, says lead researcher Vitaly Napadow, Ph.D., an assistant professor in radiology at Harvard Medical School.

“This research may help patients by better defining the specific brain regions affected by FM,” Napadow says. “The more we know about why patients experience pain, the more we can tailor treatment to combat it.”

6. Changes in brain chemistry have been linked to FM symptoms.

In 2010, University of Michigan researchers found a significantly higher amount of glutamate, a neurotransmitter associated with increased pain levels, in the brains of FM patients. Research suggests these changes may be partially responsible for pain and depression.

How it may help: Changes in brain chemistry may explain why pain is amplified in FM patients, Silverman says.

“Fibromyalgia is central pain, not peripheral,” he says. “You may feel pain in your leg, but [it’s] coming from your brain, which overreacts.”

Medications can reduce the pain volume control in FM patients.

“Since studies such as this one link changes in the brain to FM, they may [lead to] the development of more precisely targeted medicines and treatments,” Silverman adds.

See? They are trying…

 

A Sense of Security

So, I was able to offer some information to Australian FM sufferers when applying for the Disability Support Pension. Since then, I found a site which may offer help to those in the States (although it is not FM specific).

This information may help you in filing a claim for either Social Security Disability (SSD or DIB) or SSI, including applying for disability and filing the necessary appeals at various stages of the process. Applying for disability can be a difficult and drawn out process, but the odds of winning can be improved by learning about the process.

1. How to improve your chances when applying for disability benefits
2. How to file for disability online
3. How to get doctors to assist your SSD or SSI claim for benefits
4. How to assess why you were denied disability benefits
5. How to start an appeal for Social Security disability
6. How to request the first appeal for your Social Security Disability or SSI case
7. How to file a request for a Social Security Disability or SSI hearing before a judge
8. How to find an attorney representative for your Social Security Disability or SSI disability claim
9. How to get a disability hearing scheduled faster
10. How to present yourself before a Social Security Disability judge

I hope this is helpful for some of you.

 

Related articles

• Can I Get Social Security Disability or SSI Benefits for Lupus? (farmerdreiser.wordpress.com)

 

The Accidental Addict

On Sunday, The Age had a couple of articles about opiods. This is an edited version (with my additions):

Narelle Caldwell had to wean herself off oxycodone and now uses meditation and exercise to help manage her pain. Photo: Brock Perks

At first, the opioid known as oxycodone worked like magic, dissolving the pain from a slipped disc between her shoulder blades almost instantly. But over the course of a few weeks, its power started to wear off. Fearful her pain would return, Caldwell started to watch the clock. She was counting down the minutes until she could take another pill.

”It completely took over my thinking,” she says. ”I couldn’t function without it. I was completely consumed by the fear of the pain and what it was going to do to me.”

The oxycodone gave her a pleasant feeling, too. Not a euphoric high, but a sense of relief and relaxation that made her feel a bit dopey. Caldwell tried to stick to the recommended times to take her pills, but as her tolerance grew, she couldn’t resist taking them more often. After two months of chasing her pain with various opioid formulas and other medications to offset their side effects, her boss suggested she do a three-week pain management course.

She agreed and when she got in, a doctor told her she had to come off the drugs so she could find other ways to manage her pain. It was going to be an uncomfortable ride, he said, because whether she liked it or not, she was already dependent and had to withdraw.

This is what happened with me at my pain treatment course, where I met with a physio, occupational therapist and a pain management doctor. The pain management doctor told me exactly the same thing; and I tried to quit straight after my Bali trip.

”It was amazing. When I stopped taking them, I went through the whole thing, I had night sweats, I couldn’t sleep, I was agitated and fidgety and I was having mood swings,” Caldwell says. ”It took about two weeks for the drug haze to lift.”

I was unable to last as long as Narelle.  I couldn’t handle the cold turkey, at all, and only lasted 2 days.

Since the course, Caldwell, 49, has stayed off opioids and now manages her pain with meditation and exercise, among other things. She says her short time on oxycodone introduced her to the intense pull of addiction. She can see how some get lost forever.

”I’m so glad I got into that program because if I didn’t, I would still be taking those drugs and wouldn’t have a life,” she says.

Caldwell, a well-educated woman who has never smoked, let alone taken illicit drugs regularly, is one of a growing number of Australians who have got hooked on opioid painkillers.

And that would be why I am having the ketamine/lignocaine infusion. Yes, now that the gallbladder operation is over, we’re onto the next hospital stay (good thing I only have to pay my hospital excess once per year!)

Prescription of the drugs, which were once reserved for acute pain such as broken bones or post-surgical wounds, has soared over the past two decades as doctors started thinking they were useful for chronic pain and degenerative conditions like arthritis. But the shift has had unintended consequences. Many patients are being given them for long periods of time, causing them to spiral into addiction or worse – overdose.

Wider availability of the drugs has also created a thriving black market. As drug companies started making them in every conceivable form – pills, patches, syrups, suppositories, nasal sprays, the list goes on – illicit drug users increasingly realised they, too, could use the drugs to get high.

…

Some doctors now believe elderly people – the group most commonly prescribed opioids – are selling their drugs or passing them on to demanding friends and relatives who are misusing them.

The phenomenon, known as fossil pharming, is worrying Adelaide pain specialist Dr Penny Briscoe, who says all Australian patients on opioids should be routinely drug tested to make sure they are actually taking their drugs.

”People are saying they are getting them out of their grandmothers’ cupboards and we’ve had one palliative care patient admit to selling them to supplement his income – so diversion is occurring, we just don’t know how common it is,” she says.

…

Aside from concerns about diversion, doctors have very good reason to closely monitor their patients’ opioid use. Accidental and intentional overdose deaths are mounting, and many are being reviewed by coroners who are asking what went wrong. In most cases, the deceased have mixed their drugs with alcohol or other medications, causing respiratory failure or aspiration – the inhalation of saliva, food or other liquids into their lungs.

…

While some people can function well on opioids for a long time, says Head of addiction medicine at Melbourne’s Western Hospital, Dr Mike McDonough, the painkillers are turning some ordinary people with no history of substance abuse into addicts. In some specialist pain clinics, he says these people are sharing tips in waiting rooms about how to crush their tablets and inject them because their doctors are not giving them enough to satisfy their need. ”These are people who would have never imagined themselves injecting drugs.”

McDonough says doctors and governments are now debating ways of limiting supply of the drugs to reduce harm in a way that does not deny doctors reasonable access to them to treat pain. While opioids have their place, he says GPs need to know there is no evidence supporting their long-term use for chronic pain.

…

”These people still need care, so GPs can’t shut their doors to them but they also need to know when they’re doing more harm than good … We need to give GPs the tools to manage these people because the numbers are only going to get more difficult.”

And this is very important – we still need some sort of help for our FM pain. However, one of the BIG problems is:

”As a GP, I can earn more money treating someone for a cold than treating someone for an opiate addiction, so the economics are against it,” Adelaide-based GP and addiction medicine specialist Dr Philip Crowley says. ”These people are complicated patients as well, they take time and they are high risk. If something goes wrong, they can die.”

…

Associate Professor Milton Cohen, a pain specialist at St Vincent’s Hospital in Sydney who recently worked on new opioid prescribing guidelines for the Australian and New Zealand College of Anaesthetists Faculty of Pain Medicine, says about one in five Australians has chronic pain – consistent daily pain that lasts for three months or more – and that only about half of them find opioids useful for pain management.

”Having chronic pain is already quite stigmatising. People are called bludgers or accused of putting it on and now, if they’re being prescribed these drugs, they are presumed to be addicts,” he says. ”Opioids are not the be all and end all, but if they’re used properly they can improve people’s quality of life.

”We’re interested in the quality use of opioids, using them for the right person at the right dose and for the right time, so if this is getting out of hand we need to be able to track it.”

Narelle Caldwell backs the call for action. In particular, she says the government should boost specialist pain management services so people can learn to manage pain without drugs sooner rather than later.

I agree with Narelle – we need appropriate pain management services. Stop just throwing drugs at us, and help us feel better NOW!

Related articles

• Accidental addict (theage.com.au)
• Pills prove a prescription for addiction (smh.com.au)
• Chronic pain patients caught in the middle of growing opioid abuse problem [The Pump Handle] (scienceblogs.com)
• Opioid deaths, mostly overdoses, approach drunk-driving toll (vancouversun.com)
• Opioid Pain Relievers (healthcaredocs.wordpress.com)
• Study: Opiod addiction risk low with proper use (medcitynews.com)
• Pain Medications and the Risk of Addiction (everydayhealth.com)
• Granny dealers (smh.com.au)

 

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.