The Bionic Woman

by Kim Stowers

Kim Stowers was introduced to Fibromylagia when she was 21 years old. She was devastated when the symptoms took control of her life. As a passionate college student with an eye on graduate school, waking up every day with the pain and fog has been challenging. Her dream to become a research psychologist keeps her going. In the meantime, Kim lives life one breath, one flare-up, one nap, and one foggy effort at a time.

Do you ever feel helpless in the face of your pain? I think we all do at one time or another. Living with fibromyalgia can be exhausting for both the body and the mind. Biofeedback has made a tremendous difference in my management of pain. Yes, I still have pain every day, but I am no longer scared of it or controlled by it. Thanks to biofeedback, I am able to control my pain instead of letting it control me!

What is biofeedback?

Biofeedback is a way of training people to control bodily processes that normally happen without our knowledge. With biofeedback, you can learn to slow your heart rate, lower your blood pressure, equalize your skin temperature, and decrease muscle tension. All of this can be done with your mind.

Wait, what?

The idea of controlling your own body in such an intimate way may sound bizarre, but it is perfectly doable. With some help from a biofeedback therapist, some fancy equipment, and diligent daily practice you can become a mind-master in just a matter of weeks. You have more power than you think you do!

So…How does it work?

There isn’t complete agreement among researchers and doctors about how biofeedback works. However, it appears to be a matter of learning to relax properly. All of the things I mentioned above are characteristics of being in a relaxed state.

Of course, relaxing is easier said than done, especially if you’re in constant pain. That is why successful biofeedback relies on guidance. Your biofeedback therapist will hook you up to equipment, lead you through mental techniques for relaxation, and allow you to view your body’s activity on a computer screen. Over time, you will be able to see your own success as your vital functions slow down and you learn to relax properly. Eventually, you will be able to relax on your own!

But how will it help me?

Learning to relax properly has far-reaching benefits. Your body works less when you are relaxed, allowing you to breathe more easily, sleep more easily, and cope with pain more easily. In contrast, when you are stressed, your body can have a hard time relaxing, causing disruptions in sleep and daily functioning. For this reason, biofeedback has been found to be particularly useful in people who are experiencing high levels of mental and physical stress. By bringing the mind and body from a stressed state back to a relaxed state, many difficulties can be alleviated.

People with fibromyalgia experience chronic physical stress through pain, making fibromyalgia patients great candidates for biofeedback therapy. At the same time, having such overactive pain signaling systems can make the journey more challenging for fibromyalgia patients than for people in the general population. The important thing is to be willing to practice and persevere!

What should I expect?

You will be hooked up to several devices. Devices used in biofeedback therapy can vary with the therapist. You may have items attached to your fingers for measuring pulse, blood pressure, and skin temperature. You may have a probe attached to a shoulder to measure muscle tension. You may have probes attached to your head to measure brain wave activity, or a probe attached to your wrist for measuring skin conductivity.

These items are non-invasive and usually held on with tape. But to a fibromyalgia sufferer, anything that touches the skin may feel invasive. If you feel too sensitive, try going to therapy on days when you are in the least amount of pain, or talk to your therapist about alternate ways of learning to relax.

You will need to have several weekly sessions. Start biofeedback therapy during a time in your life when you know you can find a reliable way to go to therapy on a weekly basis. Each session will likely last less than an hour, but your therapist will recommend you come in for 5-10 sessions, or even more.

You will need to practice every day. Biofeedback therapy is a type of training. You are training your body to learn new habits, and you are training your mind to take control. You won’t get far doing this once per week and then forgetting about it for six days. If you want to feel the long-term benefits of biofeedback therapy, you should practice what you learn at each session for several minutes every day following that session.

What will I learn?

The following are techniques I learned over a span of 5 therapy sessions. You can do them on your own, but it is easier to master them when you are hooked up to equipment and able to see how your body is reacting!

Diaphragmatic Breathing: This is the easiest technique to learn. It involves breathing deeply and slowly through the nose while monitoring the expansion of your diaphragm. If you are breathing properly, your stomach should expand more than your chest. Once you master this, you can take a true deep breath.

Progressive Relaxation: This is a relatively simple way of learning the difference in how your body feels when it is tense compared to when it is relaxed. Simply tense each muscle in your body, one at a time, for 5 seconds, then let it relax for 20 seconds.

Deep Muscle Relaxation: This is like progressive relaxation without the tension. Instead of tensing each muscle and then relaxing it, just relax each muscle one at a time. This takes a bit more skill than progressive relaxation, because you must be absolutely sure of what the feeling of relaxation in each muscle is. Once you truly master it, however, it can be a great tool during flare-ups and spasms.

Autogenic Training: This is a more specialized way of interacting with your muscles. The goal is to warm up your muscles, especially in your extremities where blood circulation may be restricted. In the same way that you relax one muscle at a time during muscle relaxation, you attempt to “heat up” one muscle at a time by thinking of phrases that induce warmness. I like to think of sunbathing in 90-degree weather.

Guided Imagery: This is the most advanced technique taught in biofeedback training. It involves taking all of the other things you learn and using your imagination to incorporate them into creating a “safe place” in your mind. For example, I like to pretend I am lying on a secluded beach, in hot weather with a gentle breeze. I feel the sun on each muscle, and then I feel each muscle relax. I feel the breeze as it comes into my nostrils and I take a deep breath. Peace at last!

More Information

Find a biofeedback practitioner:

http://www.aapb.org/i4a/pages/index.cfm?pageid=3281

More information on biofeedback:

http://www.umm.edu/altmed/articles/biofeedback-000349.htm

Poke those Heart Disease Perils

From the Healthcare Medical Institute:

Acupuncture Reduces Heart Disease Risk

Researchers have concluded that acupuncture reduces the risk of coronary heart disease in patients who have been diagnosed with fibromyalgia. A massive sample size of over 158 420 patients with fibromyalgia were included in the study. A total of 81 843 patients received acupuncture treatments and 76 582 patients never received acupuncture. A total of 12 522 patients developed coronary heart disease during the follow-up period. 4 389 patients receiving acupuncture developed coronary heart disease but 8 133 patients, that did not receive acupuncture, developed coronary heart disease. The researchers conclude that acupuncture “significantly decreased the risk of CHD [coronary heart disease] in patients with fibromyalgia with or without comorbidities.

203. acupuncture

Acupuncture decreased the risk of coronary heart disease equally for both men and women. The risk of coronary heart disease increased with the age of patients; however, acupuncture decreased risks across all age groups. In addition, acupuncture decreased the risk of coronary heart disease regardless of whether or not patients took steroid medications, NSAIDs (nonsteroidal anti-inflammatory drugs), or statins.

Patients receiving acupuncture averaged a total of 7.45 acupuncture sessions. A total of 85% of patients received manual acupuncture, 3.6% received electroacupuncture, and 10.7% received both manual acupuncture and electroacupuncture treatments. The duration of needle retention time averaged between 20 – 30 minutes per acupuncture session. The elicitation of deqi was a basic requirement by the TCM (Traditional Chinese Medicine) doctors.

Most TCM doctors applying acupuncture in the study had a baccalaureate degree from a 7 – 8 year medical doctor program of study. A smaller number of TCM doctors had a post-baccalaureate TCM degree from a 5 year medical doctor program. Acupuncture point selection was individualized based upon differential diagnostics. Importantly, this differs from the majority of research where there is a protocolized, fixed set of acupuncture points assigned to all patients.

The researchers note that prior independent investigations demonstrate that acupuncture is effective for the treatment of fibromyalgia. This study did not investigate clinical efficacy towards alleviation of fibromyalgia itself, but rather investigated whether or not acupuncture prevents coronary heart disease in patients diagnosed with fibromyalgia. The researchers conclude that “the incidence of CHD was significantly lower in the acupuncture cohort than in the no-acupuncture cohort.”

The researchers cite this interest in acupuncture’s ability to protect the heart from damage because pregabalin was the first FDA approved medication for the treatment of fibromyalgia. Pregabalin has been proven to reduce pain, improve sleep, and reduce fatigue in patients with fibromyalgia. The researchers note that “pregabalin has cardiac adverse effects because it may induce heart failure” and acupuncture attenuates “both ischemic injury of the heart and heart failure.” Based on these findings, the researchers recommend a study to determine if acupuncture ameliorates the adverse effects of pregabalin in an effort to reduce risks associated with drug therapy.

The researchers note that the prevention of coronary heart disease may be due to acupuncture’s ability to improve sleep quality. The research team cited prior research demonstrating acupuncture’s ability to alleviate insomnia. They add that insomnia is “highly associated with fibromyalgia and CHD.”

Common fibromyalgia comorbidities (e.g., hypertension, diabetes, heart disease) are associated with elevated levels of systemic inflammation. The researchers note that the prevention of coronary heart disease may be due to acupuncture’s ability to reduce inflammation. The researchers note, “Many previous studies of acupuncture were focused on the analgesic effect of acupuncture, but additional studies in recent years demonstrated that acupuncture attenuated inflammation. Acupuncture attenuated inflammation through the vagus nerve mediated by dopamine.”Untitled

Fibro Falling

“How did you break your ankle?”

I get asked that a lot: I’m still limping, 7 months later. I was walking in Bali and I fell. No motor bikes. No bicycles. No alcohol. No bumpy footpaths. No drugs. Just walking. I fell.

Gait and balance are severely impaired in women with fibromyalgia, according to “Altered Functional Performance in Patients with Fibromyalgia” published in the journal Frontiers in Human Neuroscience.

Only women were included in this study as the vast majority (80%-90%) of people affected by fibromyalgia are women. The study showed that walking speed was significantly reduced in women with fibromyalgia, compared to women without pain, probably due to the reduction in stride length and frequency.

When the researchers analysed the association of gait and balance impairment with functional performance and the level of pain, they found that high levels of pain, depression, stiffness, anxiety, and fatigue (DUH!) were the main parameters associated with reduced gait and balance.

Finally, the researchers reported that they observed an abnormal pattern of body sways during balance tasks in fibromyalgia patients. They thought this could be associated with changes in the motor control system, and might explain why fibromyalgia patients experience a higher rate of falls.

Overall, the findings highlighted the relevant role of postural control and balance for daily activity functioning in fibromyalgia patients.

So, I’m doing hydrotherapy, pilates, deep-water running, recumbent cycling and indoor rowing.

Bring on the strong core muscles, a 6-pack and balance!

#Fibromyalgia, Fatigue and some (naughty) Fun

I know that some of you cannot even think of having sex without bringing on a flare – Me? I’d put up with a flare at the moment for a little loving!

With Valentine’s Day approaching, imagine this:

It’s 9pm. You’ve just put the kids to bed. It’s been a long, exhausting day. It feels like 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 he/she wants to ‘make lurve.’

So, what’s your reaction?

Decreased sexual interest is not considered a common characteristic of FM. Nonetheless, a 2005 Turkish study demonstrates that female patients with FM have distinct sexual dysfunction compared with healthy controls.292.FM Lovesong

What is Normal Sexual Function?

For women, sex is a complex issue because it involves both physical and emotional reactions. Normal sexual functioning, however, may be divided into specific stages that include:

  • Desire
  • Arousal
  • Orgasm
  • Relaxation

They are all tied together with feelings of fulfillment, satisfaction and pleasure. For a woman, this is achieved not simply through physical touching. It involves psychological and emotional engagement. It may be difficult at times to remain sexually engaged when your body is in pain or fatigued or you are experiencing low self-esteem.

Types of Sexual Dysfunction in Women with Fibromyalgia

Sexual dysfunction refers to the inability to either engage in or enjoy the sexual act. It occurs for a number of different reasons that include illness, the impact of medications on the body, or emotional distress.

Women with fibromyalgia may suffer from one or more types of sexual dysfunction. The more common types include:

  1. Decreased sexual desire or drive
  2. Less arousal but maybe adequate sex drive
  3. Difficulty in achieving orgasm
  4. Increased pain with sexual intercourse or vaginal contact
  5. Failure of the body to co-operate with the desired position or movement

I am not even pretending that I know how to help with the first three types. I feel I can offer some suggestion on the last two.

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, making it difficult to engage in certain sexual behaviours.

Sex may eventually become 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.

sexSo, who can be bothered? (Pick me! Pick me!)

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 a person’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 you 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 boost well-being. This double-sided sword is that while sex can relieve symptoms of FM, FM itself may result in a decreased libido, and, definitely, fatigue and pain that hinder a person’s desire and ability to engage in sexual intercourse.

Maintaining your sex life is vital to your health and well-being. Consider adopting this plan on Tuesday:

  • Plan ahead to make this the night for sexual relations. 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. This means ensuring you do not wear yourself out earlier during the day. You need to be well-rested so pace yourself.
  • If you have stiffness of your muscles or joints, consider ways to reduce the stiffness. Do some stretching to relax the muscles and make them limber.
  • Practice reducing stress. You can do breathing exercises. You can also combine exercise with stress reduction by playing soothing music while you do yoga. For some, a guided meditation or visualization will produce the desired result.
  • Take a warm bath or shower. A bath is excellent because it means you can pamper yourself. Play soft, romantic or sensual music and indulge in an sumptuous bubble bath
  • Prepare the room so it is relaxing, comfortable and reignites your passion. Clean, fresh, fragrant sheets can help. Pillows you can place to make positions easier are good tools to have handy. Soft lights and even softer music can also be effective in setting the right mood.
  • When it comes to the actual sex act, talk to your partner. Consider some positions that do not cause any discomfort but result in pleasure for both of you. Allow your partner to be more active during sex if possible (Absolutely nothing bad about THAT!) Talk it through.
  • 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! (see the attachment)
  • 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.
  • Stay physically connected by just cuddling (unless such is not made possible by allondynia, where the brain misinterprets neutral or pleasant stimuli for pain).

The important thing is to learn what has produced your sexual dysfunction and to make an effort to maintain interest in sex. You can discuss any concerns you have with your doctor and your partner or spouse. Being honest with your intimate partner will help you maintain an active sex life.

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!

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For those grown-ups among us (and those NOT easily offended), please check out these recommended sexual positions that require less physical exertion. This is adult content –  By clicking “I Agree” below, you are agreeing to the following:

  1. You are an adult, at least 18 years of age, you are familiar with and understand the standards and laws of your local community regarding sexually oriented media. You represent that, based on your familiarity with the standards and laws of your local community, you will not be violating any applicable standards or laws by requesting, receiving, downloading or possessing any of the video, audio, graphics, images or text (“Adult Material”) available on this Website.
  2. You hereby acknowledge that any use of this Website is at your sole risk. You understand that by accepting the terms of this Agreement, you are agreeing to hold the Publisher of this Web Site harmless from any responsibilities or liabilities related to your use of this Web Site and the Adult Material contained herein.
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Fear Factor

I was reading an article from The Mighty about guilt and chronic illness. You know what I mean…that niggling feeling you have about being sick. No, I’m not going to write about guilt, too (I’ve looked at those thoughts previously, here and here): I’m writing about fear.

Firstly, you need to know a little about my background, so the abridged version:

  • I was 40 before I heard about fibromyalgia.
  • Previously, I had worked in hotels, on cruise ships and in casinos.
  • At 34yo, I started a Bachelor of Laws while working, at the casino, full-time.
  • I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

I have just celebrated the 25th anniversary of my 21st birthday (yes, I’m 46 now) and, as my ankle and leg get better, I feel like I have a little more control (understanding?) over my illness.

119-fibro-fogSo, what am I going to do?

I have been sick (and not working) for 72 times longer than I was actually practicing law. I can truly say that I have forgotten more law than most of you will ever know (you know what I mean!) but I am scared $#!%less – anyone else feel the same? How are you dealing with it?

 

I Have the Antidote!

daffyToday, 85% of patients don’t know about clinical trials. If they do, it’s very difficult to find the right trials because the information that’s available is complicated and confusing. And this means that 80% of clinical trials are delayed or closed due to difficulty finding patients to take part. Medical progress is slowed, and patients continue to wait for answers.

antidote

Antidote is leading a collaborative effort to speed up the development of breakthrough treatments and potential cures by making medical research accessible and transparent to all.

What this means is they’re making it easier for researchers to provide patients with information on their studies through Antidote Bridge, and they’re making it simple for patients to find easy-to-understand information on studies that are right for them through Antidote Match. Then, through Connect Network, the first online network of patient organizations, online health portals, and advocacy groups, they’re making sure that all patients know about opportunities to take part in medical research.

By facilitating this flow of information and making these connections, Antidote can accelerate medical research. This is an urgent and bold mission to improve the health of everyone, everywhere – but we can’t do it alone.

It’s Legal to Grow Cannabis in Australia!*

mj-fmgirlOh, so much excitement about medicinal cannabis in our fibromyalgia family!

BUT do you know what’s happening here (ie: Australia)?

It is legal to cultivate and manufacture medicinal cannabis in Australia (Hold On! Keep reading!), which means people can apply for a licence to grow their own cannabis crop from the Office of Drug Control.

Since early November, through the Therapeutic Goods Administration, medicinal cannabis no longer falls under Australia’s most stringent of schedules, reserved for dangerous drugs. Instead, there are provisions in place to use it on medical grounds, with certain approvals but only for very ill people.

However, it will still be illegal to use or grow marijuana for recreational purposes.

It is up to the states to decide whether the drug will be allowed and who will be able to use it, dispense it, who will be able to approve it, and what dosage and form of medicinal cannabis is appropriate. And this is where things get murky (da,da, da, dum…)! Each state is trying to form or introduce its own legislation, while also considering the Single Convention on Narcotic Drugs 1961.

single-convention

The convention is set in place by the United Nations, and outlines how medicinal cannabis should be approached.

So, how does it work state by state?

  • If you are in Queensland, from March 2017 a specialist should be able to prescribe medicinal cannabis for certain patients who have illnesses including MS, epilepsy, cancer and HIV/AIDS. There are no age restrictions, but approval will only be provided by a doctor who needs to show evidence that medicinal cannabis could help the patient.
  • In New South Wales, medicinal cannabis will be available for end of life illnesses, but only for adults.
  • In Victoria, children with severe epilepsy will be able to access medicinal cannabis from early 2017.
  • The ACT is currently working on legislation that will include education sources for doctors. The legislation is expected to come into effect next year .
  • Tasmania is developing a Controlled Access Scheme, to allow patients to access unregistered medical cannabis. It is expected to come into effect next year.
  • The WA Government has recently passed changes supporting the federal legislation. That means that doctors are able to prescribe medicinal cannabis under strict conditions.

Products will only be able to be dispensed by a pharmacist. However, there is still no legal product available in Australia.

There is little to no information available for what the situation in South Australia or the Northern Territory.

Patients who have been illegally using medicinal cannabis are applauding the changes, they fear it could be a decade before it is widely available to those who need it.

* With many restrictions