Spreading Your Eggs…

The most consistent treatment advice that all the experts in FM try to promote is a multi-faceted comprehensive treatment approach. do_not_put_all_your_eggs_in_one_basketThose who have followed this blog for a while know that I have always promoted this advice: this means NOT putting all your eggs in one basket…

Over time, you can validate what works best to alleviate your pain. A number of lifestyle changes and other treatment methods can have a cumulative positive effect on the pain you experience.

Here is a list of some commonly used treatment options:

  1. Conventional medicines — Your doctor will work with you to discover what prescription medicines may work best for you. Options are many including pain and antidepressant medicines.
  2. Nutrition and diet — Some researchers believe that the foods you eat can affect FM symptoms.
  3. Dietary Supplements — Vitamins and minerals play important roles in health and maintenance of the body.
  4. Exercise — Exercise helps relieve joint stiffness and can help alleviate some of the pain as well. Short workouts have been proven to help many of us. Pain may initially increase, but then gradually decreases. Hydrotherapytai-chi and yoga are excellent forms of exercise. These forms of exercise incorporate relaxation and meditation techniques. Deep breathing and slow movement will reduce your stress level and increase your fitness.
  5. Physiotherapy — A physiotherapist can help you with stretching and good posture. Stretching will reduce joint and muscle stiffness. This therapist can also  help you with relaxation techniques, another powerful FM treatment option.
  6. Relaxation therapy — Stress aggravates FM. Reducing stress will provide you with a more restful sleep, improving symptoms.
  7. Massage therapy — This is another great relaxation technique.
  8. 270. aspirinOver-the-counter drugs — You will need to work with your doctor. Always talk to your doctor about any over-the-counter medications you plan to take.
  9. Herbal remedies — Many herbs have medicinal healing powers. Again, you must talk to your doctor when using herbal remedies
  10. Chinese medicine — Consider exploring Chinese medicine which places great emphasis on herbal remedies and incorporates life energy healing techniques.
  11. Homeopathy — Visit a homeopathic specialist. They specialize in natural remedies to illnesses.
  12. Acupuncture — Modern adherents of acupuncture believe that it affects blood flow and the way the brain processes pain signals. Studies have shown this may be effective for FM.
  13. Chiropractic care—Chiropractors specialize in spinal problems, which can be a major source of pain for some people.

Your odds of gaining a significant reduction in symptoms, and improving your quality of life through a combination of many different treatment options, is pretty good…if you get the right combination.

There are thousands of different options and combinations of options. What works best?

Somehow you have to record all the treatments you are trying, how you feel on a particular, what happens when you add a new modal. It’s not easy…I can’t even keep track and that’s part of the reason I started this blog…you forget that you took that extra pain-killer because your head was killing you on Wednesday, or that you missed your hydrotherapy session because your stomach was acting up.

That really is the great challenge with fighting Fibro – the BEST combination of treatments will be different for each individual. (Isn’t that the bit that sucks the most? Hearing that everyone is different?)

We need to remember that we (YOU) are the centre point of treatment, by focusing on treatments that match our own lifestyles, abilities, symptoms and resources. The problem is that a personalized treatment approach to FM relief cannot be developed without a firm understanding of the symptoms and co-morbid conditions that require treatment (and I’ve been trying to research it all for over a year…and I keep finding new symptoms!).

We must also establish a trustworthy support team to assist us in pursuing not only all the different treatment options, but the execution of the treatments chosen. Effective teams typically include the patient’s primary care physician, various specialists (e.g., rheumatologists, neurologists, dietitians, psychologists), as well as friends, family, and even members of fibromyalgia support groups.

And finally (if all of that was not enough), specific and achievable goals must be set in order to measure the effects of EVERYTHING!

Weighing-up-the-benefits-with-the-risks-of-virtualisation

It is vitally important to constantly and consistently observe and evaluate the treatment methods being used. Through this whole process, we get frustrated over and over again! Our reality is an ongoing trial-and-error approach to treatment. AAARGGGGHHHH!

However, it is crucial to treatment success and must be embraced as a necessary evil.

When trying to determine a personalized course of treatment, we need to forget the agendas of physicians, pharmaceutical companies, and other external entities. Our decisions need to be driven by both symptoms and causal factors. Examples of important questions to ask during this process include:

  • What symptom do I want to address?
  • How will this particular treatment impact that symptom?
  • What are the potential side effects of this treatment?
  • Does this treatment have the potential to interact with other treatments I am using?
  • What will this treatment cost?
  • What are my expected results and in what time frame should I anticipate to note results?

Throughout this process, it is important to remember that successful relief is highly individualized (again!) and will vary between patients. What appears to be a miraculous treatment for me may fail to provide any benefit to you.

This whole process takes more time (yes! most of us have had to wait years for a diagnosis and now we have to take more time!).

A trial and error evaluation process is most effective when employed in a scientific manner meaning that different treatment elements should often be tested in isolation. I know that when I read about CoQ10 and D-Ribose and Sam-E, I started taking them all at the same time. I am now no longer able to tell which supplement or combination of supplements is actually driving the results they may experience. It is impossible to accurately measure specific results to associate with any individual option, so I need to start again…again!

If you’d like to see iHerb’s selection of supplements, click here. Use Coupon Code LHJ194 to get $10 off any first time order over $40 or $5 off any first time order under $40.

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Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

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Related Articles:

Excuses! Excuses! Excuses!

Last night I went to hydrotherapy. Holy cow! Major workout!

Technically, it was no different to all my other classes (in fact, we have a set routine) but my body really didn’t like moving. I’m guessing that it’s because it’s been about a week and a half since my last session (which was a self-help session), where I felt like I was moving through molasses!

I had given up my self-help session while I was attending rehab as I went to a hydro class there, but their hydro was very low impact and I had built up my session to be quite physical – so it seems that I had lost my momentum during all of this.

Mind you, I am finding it harder to walk the same distance that I do every day – but I am still doing it, at least!

Because it is (seemingly?) getting harder, it would be easy to just say that the exercising is not helping my FM – a very self-sabotaging mode of thought – BUT we know we should be exercising. All the research tells us so! But when it comes time to actually get out there and start moving, many of us have a long list of excuses not to exercise:

Excuse #1: I Don’t Have Time!

What is it that is sapping all your time?

If it’s your favourite TV shows, how about during your shows, you use resistance bands, or walk in place; or you could record your shows so you can skip the commercials and see a one-hour show in just 40 minutes – that’s a 20 minute walk right there!

If it’s work that’s sapping all your spare time, try exercising on the job. Close your office door and walk in place for 10 minutes. (It’s not a long time but it all counts!)

People who exercise regularly ‘make it a habit’ – they don’t have more time than anyone else; instead, they have prioritised their exercise time as something that needs to be done and is of great value.

Excuse #2: I’m Too Tired…(said in a whining voice)

It may sound counter-intuitive  but working out actually gives you more energy, says Marisa Brunett, spokeswoman for the National Athletic Trainers Association. Once you get moving, you’re getting the endorphins ( the feel-good hormones in your body) to release – in turn, this WILL make you feel better (in the long term).

Excuse #3: I Don’t Get a Break From the Kids.

This is the time to multi-task (says the woman without kids!) Take the kids with you – while they’re swinging, you can walk around the playground or the backyard. Walk the kids to school instead of driving them. During their soccer games or practices, walk around the field. Use your family time for active pursuit – go for a bike ride with your kids or just walk around the neighbourhood with your children. When the weather’s bad, you could try all those new exciting interactive video games like Dance Revolution, Wii Sport, and Wii Fit. (Do your kids want any of these as a Christmas present? They could be a gift for you, too!)

Excuse #4: Exercise Is Boring.

“Exercise should be like sex,” says sports physiologist Mike Bracko, EdD, FACSM, a certified strength and conditioning specialist and director of the Institute for Hockey Research in Calgary. “You should want it and feel good about it before you do it. And it should feel good while you’re doing it.”

So how do you get there? First, find an activity you love. Think outside the box: try dancing, walk to the post office or gardening. Or, if you love music, try ballroom dancing. There IS an exercise for everyone.

If it makes exercise more enjoyable for you, it’s okay to watch The Good Wife or read Fifty Shades while you’re on the exercise bike or treadmill — just don’t forget to pedal or walk.

Working out with a group also helps many people. I’m not talking bootcamps or running groups. Check out your local Arthritis Foundation office – that’s where I found my hydrotherapy classes.

And, every once in a while, try something totally new: for one term I joined a Tai Chi for Arthritis group (again through Arthritis Victoria). Mix it up so you don’t get bored!

Excuse # 5: I Just Don’t Like to Move.

There are people who really DO NOT like moving but how about walking in a mall? Window shopping counts as walking!

If it’s sweating you don’t like, you can get a good workout without perspiring excessively: you can work out indoors, where it’s air conditioned; you can swim so you won’t notice any perspiration; or, try a low-sweat activity like yoga.

If exercise hurts your joints, try starting by exercising in water (my favourite – hydrotherapy!) The stronger your muscles get, the more they can support your joints, and the less you’ll hurt.

If you don’t like to move because you feel too fat, start with an activity that’s less public, like using an exercise video at home. Walk with nonjudgmental friends in your neighbourhood while wearing clothes that provide enough coverage that you feel comfortable.

Excuse # 6: I Always End up Quitting.

Set small, attainable goals – then you’re more likely to feel like a success, not a failure! If you exercise for five minutes a day for a week, you’ll feel good (maybe not immediately, but soon enough. I promise!)

Don’t try to increase your exercise by too great an amount each time. My rehab physio reminded me that Olympians try to increase their best by 5 per cent – so why work harder than an Olympian? If you do 5 minutes one day, try 6 minutes (okay, it’s actually 5.25 minutes, but really?) the next. I started at 10 minutes of walking and am now up to an hour by doing it this way – I only increased my times 4 times a week; the other 3 days, I walked for the same period of time as I had the day before.

It also helps to keep a log (especially as fibro fog can have us forgetting where we are up to). A log may help you see if you’re starting to fall off the wagon (or the treadmill).

Having an exercise buddy keeps you accountable as well – when you back out of a scheduled workout, you’re letting down your buddy as well as yourself.

And look toward the future. It’s harder to start than it is to stick with it once you’ve got your momentum going!

Any more excuses, people?

Other exercises you might like to try:

Fibro Friendly Exercises slideshow

Realistic Expectations With Pain Management

I read this post by  (Creator and founder of FibroTV.com) in FibroTV Blog and thought it might get you thinking about how YOU manage your pain:

Realistic Expectations With Pain Management When You Have Chronic Pain

Pain management is essential when you have a chronic pain condition. Unmanaged pain can rip your life apart in all areas. When most people think of pain management the first thing that pops in their head is pain medication or medication to control the pain. There are many other options than just medication and you can also use an integrative approach to manage your pain by using medication and non traditional treatments  for pain management. Having realistic expectations with pain management is also very important. When you have chronic pain nothing is going to take away all the pain and if you keep reaching for that you are setting yourself up for a lot of frustration, discouragement, and disappointment. The only way to resolve pain completely is to address the underlying cause if at all possible.

Medication is not the only option, in fact it should be your last option!

We have been taught all our lives that when you hurt or get sick you go to the doctor and get a prescription. Medication has it’s place for pain and for sickness but why do we always reach for that first?  Medication does not fix anything they just cover up symptoms and is just another toxin in the body that can cause more pain and illness. There are some people who would have NO quality of life without medications or would not be able to stay alive without medication and these are not the people I am addressing. We really need to think if medication is the right thing for us or just a quick fix. We tend to want the most amount of results with the least amount of effort in this world and sometimes that is not the healthiest approach. You need to ask yourself some serious questions when debating how you want to manage your pain and make a personal choice that is best for YOU and your overall health. You need to be your own advocate and be very clear to your medical providers your wants and needs when it comes to pain management. Doctors are taught to write prescriptions and do not come from a place of healing the underlying cause so it is something you will have to do for yourself and make your wishes clear if you want to try alternative options.

Alternative options for treating chronic pain

  • Meditation Meditation cultivates an “awareness that develops when you’re paying attention, on purpose, in the present moment, without judgment,” says Jon Kabat-Zinn, PhD, former executive director of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School, in Worcester, Mass. The idea is if you can calm and focus your mind and your body you may be able to control your pain and the degree to which you feel it.”You cannot experience pain unless you focus on it,” says Gabriel Tan, PhD, a pain psychologist at the Michael E. DeBakey Veterans Affairs Medical Center, in Houston. “Let’s say you’re focusing on your pain and then the next moment a person comes into the room with a gun and threatens to kill you; you won’t feel pain because you’ll be focusing on the man with the gun. Meditation helps you shift your focus in somewhat the same way,” explains Tan.
  • TENS unit  “TENS” is the acronym for Transcutaneous Electrical Nerve Stimulation. A “TENS unit” is a pocket-size, portable, battery-operated device that sends electrical impulses to certain parts of the body to block pain signalsThe electrical currents produced are mild, but can prevent pain messages from being transmitted to the brain and may raise the level of endorphins (natural pain killers produced by the brain). For some chronic pain patients, a TENS unit provides pain relief that can last for several hours. For others, a TENS unit may help reduce the amount of pain medications needed. Some patients hook the unit onto a belt turning it on and off as needed.
  • Chiropractors Chiropractors can treat chronic pain. They use a variety of non-surgical treatments, such as spinal manipulation, to address chronic pain symptoms, such as inflammation and muscle tension.
  • Cognitive behavioral therapy Cognitive behavioral therapy (CBT) is a form of talk therapy that helps people identify and develop skills to change negative thoughts and behaviors. CBT says that individuals — not outside situations and events — create their own experiences, pain included. And by changing their negative thoughts and behaviors, people can change their awareness of pain and develop better coping skills, even if the actual level of pain stays the same.
  • Aquatic (water) therapy Aquatic (water) therapy is quickly becoming well-known for its amazing effects on decreasing chronic pain, speeding recovery, and improving function. Aquatic therapy, or pool therapy, consists of an exercise program that is performed in the water. It is a beneficial form of physical therapy that is useful for chronic pain. Aquatic therapy uses the physical properties of water to assist in patient healing and exercise performance.
  • Restorative Yoga Restorative yoga turns on the healing relaxation response by combining gentle yoga poses with conscious breathing. Although these poses may look as though you are doing nothing, this is far from the truth. Restorative yoga rests the body but engages the mind. The breathing elements of each pose make restorative yoga an active process of focusing the mind on healing thoughts, sensations, and emotions.
  • Dietary Changes and Proper Nutrition   You are what you eat, at least that’s the old adage. It’s also one I believe in — what you put into your body has a big effect on how you feel. There are Foods that fight fat, detox foods, and foods that help you get stronger. There are even foods that help you sleep better and look fresher. Adding to the list of foods that fuel with a purpose are foods that help ease pain. Whether it’s a headache, post-workout soreness, chronic pain or an injury, there are foods that  will help ease the pain away in a totally natural way.
  • Reiki Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by “laying on hands” and is based on the idea that an unseen “life force energy” flows through us and is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.
  • Massage  Massage for chronic pain works by interrupting the cycle of chronic pain. When you have pain in a certain area of the body, the muscles tighten around that area to “protect” it, mobility is limited, and often, circulation is reduced. Additionally, pain that began with an injury or illness can cause emotional and psychological stress that exacerbates the pain and even remains after the physical condition has healed. Massage for chronic pain restores mobility by loosening tight muscles and trigger points and by lengthening muscles. Massage also improves circulation by increasing blood flow, as well as promotes relaxation and helps relieve emotional stress and anxiety that can contribute to chronic pain.
  • Acupuncture A new study of acupuncture — the most rigorous and detailed analysis of the treatment to date — found that it can ease migraines and arthritis and other forms of chronic pain.The findings provide strong scientific support for an age-old therapy used by an estimated three million Americans each year. Though acupuncture has been studied for decades, the body of medical research on it has been mixed and mired to some extent by small and poor-quality studies. Financed by the National Institutes of Health and carried out over about half a decade, the new research was a detailed analysis of earlier research that involved data on nearly 18,000 patients. The researchers, who published their results in Archives of Internal Medicine, found that acupuncture outperformed sham treatments and standard care when used by people suffering from osteoarthritis, migraines and chronic back, neck and shoulder pain.

Medications Medicines can often help control chronic pain. Many different drugs, both prescription and non-prescription, are used to treat chronic pain. All these medicines can cause side effects and should be taken exactly as they are prescribed. In some cases, it may take several weeks before medicines work to reduce pain. To avoid dangerous drug interactions, tell your doctor all the medicines you are taking (including herbal and other complementary medicines).

Your Choice! Your Body! Your Life!

When it comes to pain management you have to make choices that are best for you because it is YOU that has to live with the consequences and results of that choice. Everyone feels pain different and copes with pain different. Just because Suzi Q is doing something that is helping her it does not mean it will help you. We are all very unique beings and your chronic pain management is going to be as unique as you. The one thing I do recommend to EVERYONE with chronic pain and illness is to eat a well-balanced and nutritious  diet. Even if it does not resolve any of your pain you will be healthier and be able to cope better. You can never lose by eating healthy :-)

May I Buy a Vowel?

So, now that I have the weaning medication ‘diet’ under control, I don’t want to jinx how I’m feeling. That means that this post may be a bit of a challenge to those suffering fibro fog today:

I woke up today, feeling pr_ttg__d, to a message telling me that my pain course (do I really need to learn more about pain?) has been postponed. This was g_e_t news because I had been worried that my day was going to be too busy.

After checking mail, comments, posts, etc, I went for a walk to the post office (to send off 19 orders – took an hour there!) and was feeling g_e_t, especially as I had finally started getting these orders out to you guys!

Walked back home and sent out all the despatch emails. (Sorry, guys, if you didn’t get an email today, we are still waiting for the stock.)

OMG! I am feeling am_zi_g! Maybe it might be time to clean my house? 
Stop, said the little angel on my shoulder, remember all that pacing stuff that you wrote about? Time to put that into practice, miss! So, instead of cleaning, I sat down and played some very relaxing games of Scrabble, Words with Friends and Lexulous.

At about 4pm, the AusPost package man came to the door – YIPPEE! Could this be what I (and you) might be waiting for? Sorry, once again, that’s a no. Instead, it was my new swimsuit from the fat lady store in the States – not a bad consolation prize (at least, for me!) I tried it on – pe_fe_t fit! Bring on Bali!

Next, I did a few odd jobs (you know, those things that you can’t really list – but take up time during the day?) Then, I threw together my swim bag for hydrotherapy.

WOW! B_st class ever! Everything is stretched. Everyone was in a chatty, talkative mood. And I still feel tre_en_ous!

The question is: please (please, please), can this last until (at least) after Bali?

Can Sudafed Cure Fibromyalgia?

So, I’ve been in hell for the last couple of days with head, neck and face pain that would not quit. No matter how much Panadeine Forte and self-treatment I threw at it, it persisted. I had a reflexology treatment on Wednesday with about an hour of some relief. I hid in my darkened, heated house for the whole day Thursday; and on Friday, I went to physio and hydro – still no relief (except while actually in the pool). Tried a joint – it loosened my shoulders but my face felt like it was about to explode. In the evening, I went to a shiatsu treatment. By the time I drove home with all the lights in my eyes, I was ready to die.

Finally, despite knowing that the pain wasn’t sinus pain, I tried Sudafed PE and Panadeine Forte. Oh my, without jinxing it, relief! But how?

I looked up Sudafed PE and found that the three main ingredients are Guaifenesin, Dextromethorphan and decongestants. Hold on! I’ve seen that word somewhere – Guaifenesin?

Guaifenesin is an expectorant that helps thin and loosen mucus in the lungs, making it easier to cough up the mucus. No, that wasn’t where I’ve seen it…

Aah! The Guaifenesin Protocol: Dr St. Amand claimed that the drug Guaifenesin could treat FM symptoms by removing excess phosphate from the body. These deposits were believed to cause serious impediment of blood flow to these tissues, resulting in an impairment of vital cellular functions throughout the body. Naturally, if this were truly the case, it could explain the widespread pain and body-wide dysfunction that fibromyalgia patients have.  Now I know absolutely nothing about this protocol (other than what I have just looked up) so I do not mean to offend those who are fans/followers with this post. I am only making personal comments from my recent experience.

The removal of the phosphate should supposedly lead to a reversal of all FM symptoms, which would essentially be as close to a cure as possible.  Dr St. Amand claims that he has successfully reversed all FM symptoms in 90% of his patients.  Additionally, Dr St. Amand himself claims to have had fibromyalgia, but that he has been pain-free for decades.

At the 1996, Orlando American College of Rheumatology meeting, Robert Bennett, M.D., presented the results of his one-year placebo-controlled trial of Guaifenesin. The Oregon Health and Science University professor from Portland posed the following question at the opening of his speech: “Why on earth would someone choose to study an expectorant for the treatment of fibromyalgia?” Bennett says: “The answer lies in the realm of popular demand.”

As Dr Bennett explained, the study of Guaifenesin for the treatment of FM had to do with the patient demand for this drug and the frequent claims on the Internet and elsewhere that it was a cure for FM. The proponents of this ‘cure’ often claimed Guaifenesin wasn’t for wimps! Yes, as this drug was drawing the calcium phosphate deposits out of your tissues and into your bloodstream, you would have to go through symptom flare-ups. In the long run, after cycling in and out of severe pain, Guaifenesin would rid your body of the damaging effects of these deposits. As long as you stayed on a maintenance dose of this drug, you would live out the rest of your life pain-free. What an enticement, especially for those patients who are already up to their eyeballs in pain!

The likelihood that Guaifenesin was the cure was slim, but for the benefit of patients who were dumping conventional therapies to try it, Guaifenesin needed to be tested. Dr Bennett agreed to take on the arduous task of a one-year double-blind, placebo-controlled study to get to the truth about Guaifenesin.

Twenty FM patients were placed on Guaifenesin twice a day and another 20 patients took a placebo twice daily. None of the patients knew what they were taking, but all were given the same instructions to not take salicylates (like aspirin) because they interfere with the functioning of Guaifenesin. After a year, the response to Guaifenesin was the same as that for the placebo. Now, what about the claims on the Internet and elsewhere that this study was fatally flawed because patients might have used cosmetics and other topical products that contain salicylates? Dr Bennett provided six scientifically based reasons to toss out this claim:

Lastly, Guaifenesin was not found to increase uric acid or phosphate excretions. Thus the postulated action of Guaifenesin—the reason cited for its effectiveness—could not be demonstrated.

Dr Bennett commented, “We have shown the placebo is just as effective as the placebo!”

Nonetheless, Guaifenesin, also, has a property which is not well-known by many people (including doctors), but is well documented in the medical literature.  It is capable of acting as a skeletal muscle relaxant.  It does this by depressing transmission of nerve impulses in the central nervous system.  The reason that this information is not well-known is because Guaifenesin was a grandfathered drug, so it was never subjected to thorough testing, as later drugs had to be.  And it is not used for this property, by traditional doctors, because other drugs with similar properties were found to be more effective.

Hmm, maybe Sudafed PE is the cheaper alternative to all those expensive FM drugs?

PLEASE NOTE:

  1. I am not really promoting the use of decongestants or cough medicines to get Guaifenesin. There are potential side effects from various additives. I am NOT a medical practitioner and this post, although based on minimal internet research and my own personal experience, is tongue-in-cheek and should NOT be taken seriously.
  2. If any of my readers are actually on the Guaifenesin Protocol, perhaps they would be willing to tell us about their experience.

Rollercoaster Rush

My day was an absolute rollercoaster…

Woke up at 9.20am – not that bad, right? Except I had rehab at 10am! Jumped (as much as someone with totally sore bits can jump) out of bed, threw on some clothes and off I went – good thing that I laid out clothing last night!

 

As you know, I have only recently started driving short distances again – well, it started to rain on the way to rehab. Okay, turn on the intermittent wipers…cool. Then, it started to pour, just when I was trying to indicate and change lanes, between two trucks – AAARGH! Too much, too soon! I arrived at rehab in tears.

 

Had a wonderful hydrotherapy session at rehab. (Hmm, notice how short the UP posts are?)

 

 

 

After rehab, I had the all-important meeting at Arthritis Victoria with the General Manager of Development and Business Services.

 

 

Basically after about 45 minutes of talking about what a great job I’m doing at promoting awareness of FM, he suggested that I continue doing what I am doing or set up a peer support group. He cited all the government rigmarole as a giant hurdle plus the fact that I’m doing it all alone. I understand that BUT there is so much I want to do! Have to have a serious sit-down and think about what I’m going to do…especially as there appears to be less support from Victorian sufferers than the international sector (that’s mostly YOU!)

Exhausted after the meeting but have to make a stop at the post office (to send off another order from http://www.freewebstore.org/fibromodem) and supermarket – where a 90 year old lady asked me if I was alright because she thought that I looked like I was about to collapse – VERY SAD!

 

Finally got home and dumped wet towels, folders, notes from the meeting and shopping on the floor so I could just eat something – notice I haven’t eaten anything yet in this post and it’s about 3pm? Then, idiot that I am (sometimes), I turned on my computer and got side-tracked into reading emails and posts. By the time I had finished all of that, I had no time for a lie down before a 7.30 appointment.

 

7.30pm – Shiatsu. Thank you. Time to lay back, be pampered, be quiet and just get over the day.

 

 

 

 

Home

 

 

 

 

Food

 

 

 

 

Now sleep (hopefully!)

 

 

See? Rollercoaster.

Immaculate Conception or Flare?

I’ve been feeling really good lately (other than flu, boobie stuff and, of course, the all-pervasive fatigue – but there was no real FM pain); but I refused to write it on here or speak it out loud because that would be pushing my luck.

Yesterday, as you know, I had THE phone call with my father and today, Mommy left for China; and today, I woke up in the worst pain I have ever had!

I woke up at 9am but it took me until 11am to get the energy to swing my legs to the edge of the bed (while ignoring the pain in my hands and legs) and hoist my body up. I slowly and carefully went to the bathroom, then to my spot on the couch. Then I ran (yes, ran!) to the bathroom again with severe abdominal pain. Back to the couch. Back to the bathroom. To the medicine drawer for some Buscopan.

After about an hour of this, the pain seemed to lessen (at least, in my stomach) so I got dressed and ready to go to my Pain lecture. If I was pregnant, I would say that right then, labour started again. Back to the bathroom. To the phone to cancel my attendance, then to bed with my heat pad for a 2.5 hour nap.

When I woke up, my stomach hurt less but the rest of me was screaming. For three hours, I debated whether I should go to hydrotherapy. Finally, I decided that, it was because my body hurt so bad, I had to go. I couldn’t lift or move my legs – they wouldn’t work properly, not even in the water. I lasted half the class.

I got home and, after a sandwich (my first food of the day), it was back to the bathroom (a number of times) and some Imodium and more Buscopan.

So, having only been diagnosed with FM for a relatively short time, I can now quite assuredly say that stress brings on flares!

So, point proven – where do I find the stop button now?

A Prescription for Exercise

Since stopping work and being diagnosed with FM, I have increased my exercise intake (is that the appropriate word?) Each week, I do two hydrotherapy sessions, a tai chi class and I am testing out different yoga/Pilates classes to fill in two other spots. Along with that, I now walk (to the shops, doctors’ appointments, etc) every day. I have done all of this for two reasons – 1) I’m not driving so I have to walk; and 2) my doctors (as well as all the websites) told me to exercise. No-one told me why.

Has anyone told you why we need to exercise? (other than the ‘normal’ health reasons)

Most of us have much more important things on our minds than exercise, like painful tender points, deep muscle pain, and fatigue, so why is exercise important for fibromyalgia?

  • Studies show that exercise helps restore the body’s neuro-chemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins. Endorphins help to reduce anxiety, stress, and depression.
  • Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. While only a small percentage of all serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods. For those who feel stressed out frequently, exercise will help to desensitize your body to stress, as an increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels.
  • A new study, at the Georgetown University Medical Centre in Washington, D.C., suggests that exercise may improve memory in women with FM. Decreased brain activity, due to aerobic exercise, suggests that the brain is working more efficiently. The researchers suggest that one of the benefits of exercise for fibromyalgia patients is that it may streamline brain functioning. It may help free up brain resources involved in perceiving pain and improve its ability to hold on to new information. The findings may help explain why regular exercise decreases pain and tenderness and improves brain function in people with fibromyalgia. (These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.)

What Are Other Benefits of Exercise for Those With Fibromyalgia?

Regular exercise benefits people with fibromyalgia by doing the following:

  • burning calories and making weight control easier
  • giving range-of-motion to painful muscles and joints
  • improving a person’s outlook on life
  • improving quality of sleep
  • improving one’s sense of well-being
  • increasing aerobic capacity
  • improving cardiovascular health
  • increasing energy
  • placing the responsibility of healing in the hands of the patient
  • reducing anxiety levels and depression
  • relieving stress associated with a chronic disease
  • stimulating growth hormone secretion
  • stimulating the secretion of endorphins or “happy hormones”
  • strengthening bones
  • strengthening muscles
  • relieving pain

How Can I Get Started Exercising With Fibromyalgia?

If you want to start exercising, it’s important to start slowly. Begin with stretching exercises and gentle, low-impact activity, such as walking, swimming, or bicycling. Muscle soreness is normal when you are just starting an exercise regimen. But if you have any ‘abnormal’ pain, stop and call your doctor. You may have overworked or injured your muscles.

Are There Exercises to Avoid With Fibromyalgia?

There are no particular exercises to avoid if you have fibromyalgia. Aerobic exercise (running, jogging), weight training, water exercise, and flexibility exercises can all help. Golf, tennis, hiking, and other recreational activities are also healthful. If you have other medical problems or if you’re planning more than a moderate-intensity exercise program, discuss your plan with your doctor before you start.

Off to self-help hydrotherapy now…

Hydro Harpy

I have just realised that, with all my references to hydrotherapy, I have never described one of my sessions.

The term hydrotherapy itself is synonymous with the term water cure as it was originally marketed by practitioners and promoters in the 19th century. A hydrotherapist therefore, is someone who practices hydrotherapy. Needless to say, the hydrotherapy that I am talking about is NOT the form of torture in which a person is forced to drink large quantities of water. I am talking about a course of medical treatment.

Firstly, you already know that I LOVE my warm water classes. Just stepping into the water (which is a gorgeous 32-34 degrees celsius) is heaven! Most of the pain just dissolves away, like sugar in hot tea. A lot of the time, I am tempted just to float around for an hour, absorbing the warmth into my bones, listening to the lapping of the pool and meditating (I have been told off for that – sometimes the leaders think you have died if you are too still for too long!)

Ok, I’m here to exercise. Every fibromyalgia expert will tell you that exercise is an essential component of any fibromyalgia treatment program.  However, most of us complain––with valid reason––that exercise is difficult and painful.  This is where Warm Water classes come in. The warmth of the water provides several benefits that make exercise easier, less painful and more effective.

  • Water’s buoyancy decreases the effects of gravity, displacing 85 per cent of your weight.  As a result, it takes less effort to move because you don’t have to support your whole weight.
  • The buoyancy of the water also takes the weight off your joints, allowing for more flexibility (surprisingly, I can stretch my legs up further and higher).
  • The hydrostatic pressure of water reduces joint swelling and inflammation, which makes exercising easier and less painful.
  • Water provides resistance, which helps you increase strength and improve balance. The resistance factor also burns more calories.  An exercise done in water can burn twice as many calories as the same exercise done on land.
  • Immersion in water promotes relaxation, reduces muscle fatigue and lessens pain perception.

In the water, all of a sudden, you feel like you can do all the things you used to do! You can work at your own pace to gradually improve joint mobility, muscle strength and general health and fitness.

I go to ‘special’ classes held by Arthritis Victoria (best resource in Melbourne!) throughout Melbourne (update on 31 May 2015, sadly Arthritis Victoria no longer run these classes). Water exercise programs can be done on an individual basis or in a class.  While individual programs are custom designed to meet your specific needs, classes are far less expensive and can be just as effective (unless you have a special need that cannot be addressed in a group setting).  An added benefit to exercising with a group is the opportunity to interact with other people and make new friends. The classes are run by volunteer leaders who have been trained appropriately. During my first term, I went to an under 55/back class. The class was fun, had music and everyone chatted; but it was further from my home. This term, I started going to another class (closer) but all the fun was gone!. Needless to say, I’m going back to the first one. So lesson one – if you don’t enjoy the first class you go to, try another one!

You do not need to know how to swim (although you may be more comfortable if you can) as hydrotherapy pools are not deep. Also many of the exercises are done with flotation devices. We do a series of exercises, with a floatie-thing around our necks and a buoyancy belt around our waists – there is NO way that you are going to drown! Some of the exercises involve wrapping your arms around the side of the pool and floating, and then stretching your legs in a series of moves – cycling, frog jumps, stretches. Then we turn it around so our feet are holding onto the edge, and we exercise our arms – it may be just moving a plastic soda bottle around, against the weight of the water; or stretching. Everything gets moved, exercised and stretched. The great part is that it doesn’t feel like exercise.

What You Should Know Before Beginning a Water Exercise Program

As with any exercise program, check with your doctor before beginning any kind of water exercise.  There are some patients for whom water exercise is not recommended.

Find a program with a qualified instructor.  Your local Arthritis Foundation and YMCA are good places to start looking.  You might also ask your doctor or physical therapist for a recommendation.

Ask about the temperature of the pool.  Since most people with fibromyalgia are very sensitive to cold, the closer the pool’s temperature is to body temperature, the more comfortable you will be.  However, do not attempt to exercise in a hot tub without your doctor’s permission.  Just sitting in water that hot can raise your blood pressure.  Exercising in hot water can be extremely dangerous.

Start slowly, exercising no more than 20 to 30 minutes two or three times a week.  Gradually increase your time until you are working out 45 minutes to an hour.

Don’t overdo.  Exercising in the water can be deceptive.  Because you don’t feel like you’re straining, it is easy to do too much without realising it.  Until you have a few sessions under your belt and know how you feel after working out, take it easy.  Any time you feel tired, stop exercising and relax in the water or leave the pool.

Do not try to push through the pain.  If you experience new or increased pain, stop. For us, pushing through the pain is a definite No-No!

If a particular exercise is causing you pain, stop and talk to your instructor.  There may be an alternative way of doing the exercise or you may just need to sit that one out.

Relax, have fun and enjoy your newfound freedom of movement in the water!

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