Working Girls

Sorry guys, but this is another study about women only (it probably can be associated to men quite successfully though).  Women with FM have great difficulty in managing a work life with their condition. Some women (like me) cannot work at all in their chosen profession: who wants a lawyer with fibro fog? Some work part-time and some struggle to work full-time. Reported work ability in women with FM varies from 34 to 77 per cent in studies from different countries.1

The factors which affect the ability to work in women with FM include pain, fatigue, impaired physical capacity and activity limitations. However, it is difficult to define to which extent symptom severity can be compatible with work.

A cross-sectional study of 129 women of working age with FM was categorized as working or non working. The average age of participants was 45.7 years, with an average of 10.5 years worth of symptoms. According to the American College of Rheumatology criteria, the average number of tender points was 14.8.

The main finding in this study was that working women (WW) displayed better ratings than non working women (NWW) in terms of pain, fatigue, stiffness, depression, disease specific health status and physical health related quality of life, which represent body functions and overall health status!

  • Physical capacity did not differ significantly between WW and NWW in terms of performance-based tests, where both groups showed lower capacity than the average population.
  • The number of pain localizations was significantly lower in WW than in NWW and global pain was significantly milder in WW than in NWW. The average pain of WW was well above 50 (0–100), which corresponds to the average pain level in previous studies of FM – this is measured using the Fibromyalgia Impact Questionnaire (a disease specific measure and comprises ten subscales of disabilities and symptoms ranging from 0 to 100). The average NWW pain was above 75 (0–100), which corresponds to the ratings of severely afflicted patients with FM. The results indicate that women with FM having moderate pain generally could be expected to work. Some women appear to be able to work despite severe pain, which raises the question if there are workplace related factors that support their ability to work. As such, the influence of work related factors on work ability in FM need to be studied further – it was not covered in this study.
  • 2011-04-20_Working-9-to-5 Global fatigue was found to be significantly lower in WW than in NWW as well as physical fatigue, reduced activity, and mental fatigue. Fatigue has previously been found to be an important factor for work disability; however, these results showed severe global fatigue with ratings of over 70 also in WW, indicating that fatigue might not be a critical factor for work disability.
  • Depression was rated significantly lower in WW than in NWW.
  • WW displayed a significantly better disease specific health status than NWW.
  • Physical health-related quality of life was significantly higher in WW than in NWW; however, the quality of life of workers in this study was very low as compared to a national sample.

The theory of the healthy worker effect suggests that healthier individuals are more likely to remain in the workforce BUT a limitation of this study is the cross-sectional design which does not allow analyses of cause and effect; that is: does working make women with FM healthier, or do healthier women with FM work?

  1. Henriksson CM, Liedberg GM, Gerdle B:  Women with Fibromyalgia: Work and Rehabilitation. Disabil Rehabil 2005, 27(12):685–695.

 

Got Morning Stiffness?

When asked, most of us would say that the most debilitating symptoms of FM are pain, fatigue, and sleep disturbances. For me, the next one is stiffness – and who wouldn’t complain about waking up each morning to a body that feels like the final stages of rigor mortis?

But most doctors generally regard it as a minor symptom or a sign of inflammation unrelated to the fibromyalgia.

121. rise and shineWhen doctors think of stiffness, they conjure up rheumatoid arthritis and other inflammation-related joint diseases that make it harder for these patients to get going in the morning. Yet studies in FM patients also show stiffness is usually worse in the morning and “morning stiffness has been rated as more severe in fibromyalgia than rheumatoid arthritis,” says Robert Bennett, M.D. of Oregon Health and Science University in Portland. He says people with both conditions have worse stiffness than those with FM alone. But why would FM patients be troubled by stiffness?

As people age, they get arthritis, become less active, and expect a little morning stiffness. However, this does not explain why a 25 or 45-year-old FM sufferer would show signs of joint stiffness on a test involving the ankle. Needless to say, FM patients showed twice as much stiffness as age-matched healthy controls.

Stiffness sometimes correlates with pain, which means that the drugs used to treat our pain should help with the stiffness – but, in a study supported by Eli Lilly, the use of Cymbalta only improved the symptom by a tiny 10%. This compares closely to the 13% benefit found in the trials of Lyrica.

If the pain of FM was solely related to the stiffness, the drugs should be able to produce significant improvement in this symptom. Yet they don’t.

Fibromyalgia is a messy multi-system condition. There is the central nervous system component involved in processing pain, an area all the drugs are supposed to work on (Cymbalta, Lyrica and Savella). There are trigger points and tender points, which cause serious pain and restrictive movement. In addition, you have to remember the circulatory system, and FM patients have increased arterial stiffness (but that’s a whole other post).

Your arteries should be flexible, but studies show a reduction of the elastic-like qualities in us compared to age-matched controls. An overly active sympathetic nervous system is thought to be partly to blame.

Therapies to relax your sympathetic nerves, such as a hot shower and many other approaches, often ease morning stiffness. One of the three FDA-approved drugs may even help, but just don’t expect too much from them.

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If You Don’t Ask, You Don’t Get

Many people with FM continue to work full or part-time. But the chronic pain and debilitation (this is the word that was voted the most popular for the fatigue we feel) associated with FM often make working very difficult. If you are employed, it’s important to learn about managing the symptoms and coping with pain and debilitation.

Can People With Fibromyalgia Work?

By self-managing fibromyalgia pain and controlling daily stress, many people with FM can do almost anything they choose, by making simple modifications to your workplace that allow you to continue working.

What Type of Workplace Changes Can Help Someone With Fibromyalgia?

First, openly discuss your condition with your boss. Talk about the symptoms of pain, fatigue, and stiffness. Explain how you may have good days and bad days.

Explaining will give people at work a better idea of what you are feeling each day. Ask your boss if you can take rest periods on bad days. Or ask if you can take work home if you are feeling fatigued. Ask if you can come in on Saturday if you miss a day of work to make up the lost time and income. In addition, ask if you can put a cot in your office for a brief nap at lunchtime. Taking a midday nap helps many people with fibromyalgia and other chronic health conditions function on the job.

Are There Workplace Modification Guidelines for People With Fibromyalgia?[i]

To address concentration issues, employers should consider:

  • providing written job instructions when possible
  • prioritizing job assignments and providing more structure
  • allowing flexible work hours and allowing a self-paced workload
  • allowing periodic rest periods to reorient
  • providing memory aids, such as schedulers or organizers
  • minimizing distractions
  • reducing job stress

To address depression and anxiety, employers should consider:

  • reducing distractions in the work environment
  • providing to-do lists and written instructions
  • reminding the employee of important deadlines and meetings
  • allowing time off for counseling
  • providing clear expectations of responsibilities and consequences
  • providing sensitivity training to coworkers
  • allowing breaks to use stress management techniques
  • developing strategies to deal with work problems before they arise
  • allowing telephone calls during work hours to doctors and others for support
  • providing information on counseling and employee assistance programs

To address fatigue and weakness, employers should consider:

  • reducing or eliminating physical exertion and workplace stress
  • scheduling periodic rest breaks away from the workstation
  • allowing a flexible work schedule and flexible use of leave time
  • allowing the employee to work from home
  • implementing ergonomic workstation design

To address migraine headaches, employers should consider:

  • providing task lighting
  • eliminating fluorescent lighting
  • providing air purification devices
  • allowing flexible work hours and work from home
  • allowing periodic rest breaks

To address issues associated with sleep disorders, employers should consider:

  • allowing flexible work hours and frequent breaks
  • allowing the employee to work from home

My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. So far, I cannot see how I can maintain employment with FM.

If you have tried different jobs and are unable to work, you might consider applying for disability. It can be a long and arduous journey, dealing with our Human Services departments and disability may be difficult to get because of rules about work capacity.

Can I Get Disability Because of Fibromyalgia?

In Australia, a person must have an impairment rating of 20 or more (under the impairment tables in the Social Security Act (Cth) 1991) to receive the Disability Pension.

The Americans with Disabilities Act has a general definition of disability that each person must meet. Therefore, some people with FM will have a disability under the ADA and others will not.

Because fibromyalgia is extremely hard to diagnose and there are no laboratory tests to prove the ailment to a third-party, it’s important that you do your homework before you apply for disability. And remember that you may be denied but, there are avenues to appeal decisions. Be aware of your rights! And check, and double-check, time limits!

How Do I Apply for Disability?

To apply for disability benefits, call your Social Security/Centrelink office. Much of the information may be provided over the phone, by mail, or the Internet. You will be asked specific questions about how you have trouble with daily activities. And you will need to be as specific as you can, describing your limitations and why you cannot work. You will be asked to give the names and addresses of your doctors. The Social Security office will contact each one for records.

What Other Proof Must I Provide for Disability?

Describing your fibromyalgia symptoms alone will not qualify you for Social Security disability. You have to be specific about signs and physical findings related to fibromyalgia and pain and how that impacts your ability to work. The Social Security staff will consider all your symptoms, including pain.

All of this information considered together must lead to a conclusion that you are disabled before you will be granted disability with benefits.

What if I’m not Approved for Disability?

It is common that fibromyalgia patients are not approved for disability, especially with the first application. If you are not approved, you’ll have the right to appeal. Some patients find it necessary to have the help of a lawyer during the appeal process. Although it may increase your costs, the chance your case will be approved is usually better if you have legal counsel.

I have applied (as some of you may know) and was rejected because it was decided that I do not have an impairment rating of 20 or more. As such, I have started the initial phase in the appeal process.

What Type of Documentation Is Needed to Get Disability?

It’s important to get detailed documentation – reports – from your doctors, including psychologists, at the onset of your illness. Have your doctors submit documentation of all prescribed medications, therapies, and lifestyle remedies necessary to resolve your fibromyalgia symptoms. You should also be evaluated by a fibromyalgia specialist, usually a rheumatologist. This doctor will give a detailed assessment of your impairment along with a list of the many tests and treatments used in your condition.

This seemed to be the hardest part so far. My rheumatologist held on to the incomplete report for 8 weeks before Mommy and I camped out in his office and reported him to the Hospital administration. Finally, it took less than 15 minutes for him to complete the required paperwork. Thanks Doc, for all the stress and worry for no reason.

I sent the requested reports (from him and me), copies of all correspondence between my medical team and a cover letter to Centrelink, on Friday. Although I have linked my letter here, I do not know if it will be successful, so if you choose to use parts of it, I cannot guarantee an outcome.

Wish me luck.


[i] These lists come from the U.S. Department of Labour’s Job Accommodation Network. I do not believe that there is an equivalent list in Australia (yet!)

Fibromyalgically Sexy! (bet you haven’t seen those two words in a sentence together before!)

It’s been a long, exhausting day. It’s only 9pm, but you feel like it’s 4 in the morning and you’re ready to fall over. Suddenly your other half looks at you in that way, smiles and strokes your arm, and you know they want to make love, but all you can do is stare at them in shock.

Do you NOT know how I’m feeling?

Decreased sexual interest is not a common characteristic of FM. Nonetheless, a 2003 Brazilian study, involving women in their 40s and 50s, half of whom had FM and half of whom did not, found that the healthy group was likelier to have had a regular sexual relationship in the last six months than those with FM. The FM group members were less satisfied with their sex life, had more pain during intercourse, experienced more fatigue during sexual intimacy, and were less likely to initiate sexual intimacy than healthy women.

We already know that FM is more foe than friend.  While many of us are too tired for sex, it is the muscle pain that leads to pressure and a squeezing of the pelvic area and lower back that ultimately result in muscle cramping during sexual intercourse. This naturally causes a great deal of discomfort for an individual with FM, making it difficult to engage in certain sexual behaviours.

Sex eventually becomes something that is no longer pleasurable (I can’t believe I said that!), but a negative experience. One’s natural tendency is to avoid such physically intimate situations, especially given that one is too tired or sore for sex. So, who can be bothered?

Further, taking a toll on one’s sex life are FM medications that decrease libido and a man’s ability to attain or maintain erection. Anti-depressants can also take a toll on one’s sexual functioning. A person living with FM may react negatively to bodily changes, like weight changes and the loss of muscle mass.

As lovers feel less connected in the boudoir, their sexual relationship takes a hit (ie: unless they take steps to stay mentally and spiritually connected while attempting to be physically intimate). It’s important to realise that the release of hormones and endorphins, natural opioids, during sex can help to relieve FM symptoms, like pain and depression, and boosting well-being. This double-sided sword is that while sex can relieve symptoms of FM, like pain and depression, FM itself results in a decreased libido, fatigue and pain that hinder the individual’s desire and ability to engage in sexual intercourse.

Maintaining your sex life is vital to your health and well-being. In order to have a healthy sex life, why not try some of these pointers:

  1. Practice acceptance. Adapt. Make peace with the fact that you need to deal with this condition, and then allow yourself to reclaim your life in every way.
  2. Maintain a regiment that helps you to feel good about yourself – not necessarily just grooming. Sometimes you need to treat yourself to feel good. Take yourself off for a hot oil massage or a manicure.
  3. Stay physically active, preferably with your partner, as much as possible, as another way to feel better about yourself, possibly boosting your sex drive.
  4. Manage stress with relaxation techniques like meditation.
  5. Talk to your doctor about how your condition is affecting your sex life, including any medications that may be at play.
  6. Arm yourself with information. Become educated about your condition and how FM impacts your sexuality and sexual expression. This is a must in talking to your partner about everything that’s taking place. Being informed can also help to alleviate your lover’s concerns, helping both of you to stay emotionally connected.
  7. Allow your partner to be more active during sex if possible (Absolutely nothing bad about THAT!)
  8. Plan for sex after luxuriating in a warm bath or using a moist heat application, both of which ease FM pain, inflammation, muscle spasms, and stiffness.
  9. Experiment with different sexual positions. There are plenty of activities and positions that are ideal for fatigue; and many ways to avoid painful sex. And have fun trying them ALL out!
  10. Enjoy each other despite flare ups. Part of this is not being so goal-oriented during a love-making session. Allow things to happen as they can.
  11. Stay physically connected by just cuddling (unless such is not made possible by allondynia, where the brain misinterprets neutral or pleasant stimuli for pain).

Finally? Don’t give up. It might feel like you’re never going to want to have sex ever again – but that’s the fibro talking, not you. Lust strikes at the oddest moment, and people can have sex in a myriad of ways. So have fun exploring what works best for you. and you’ll feel IT again. And when you do, take advantage of it, and enjoy it!

N.B. This whole post (and the research involved) developed from me wanting to tell you about the new thongs/g-strings now available in my shop. However, as I looked into it more, it became increasingly difficult to ask if you were feeling unapologetically naughty. Hmm – obviously, I did anyway.