Wednesday, 7 May 2014

Fibromyalgia is real but also manageable (presentation)

Fibromyalgia Awareness day - May 12

I have seen a number of presentations by different doctors on fibromyalgia. This is the most accessible and common sense presentation I have seen - thank you Andrew J. Gross, MD.

Fibro research is pointing to central nervous system problem, where pain sensitisation increases the frequency, duration and intensity of pain signals.

Of course, no cause is yet known, and treatment must be multidisciplinary.  No one treatment works the same for two patients - you have to try a bunch of things, keep what works the best, and revisit the others occasionally.

Interesting for me were the links Andrew made between fibro and other diseases or trauma. Sexual abuse victims and PTSD sufferers often develop fibro, as do people with other chronic pain illnesses (like endometriosis). So I got the double whammy.

Based on scientific research, as well as observations of his patients, Andrew suggests a combination of medication, movement (aerobic exercise, stretching, strength - with tai chi being particularly useful), cognitive behavioural therapy (CBT) and mindfulness techniques, regularity in daily routine and improving the quality of sleep as all essential tools to better manage fibro pain.

Please share this excellent presentation to raise awareness of fibromyalgia and how it can be managed.

Tuesday, 29 April 2014

Compounded and complicated pain

Juggling worsening chronic illnesses, increasing pain, a too-high-for-me workload and a lot of stress means I'm not thinking clearly, paying attention, and certainly not doing anything mindfully.

Which means, accidents will happen. the way to the doctor, while waiting for the tram to arrive, I stepped without thinking, and without my usual glance at my feet.

There is a 1cm difference in height between the pedestrian pavement and the bike path that you must cross to get to the tram.

Of course, I stepped perfectly half-on and half-off. The poor left ankle and foot gave a good crack as it twisted over to the outside, and I landed heavily on my dodgy knee, right on the spot identified as a meniscus lesion a while ago.

A very painful reminder to pay attention and look where I step!

I somehow hobbled to the doctors with my right leg complaining about the extra work, and confessed in tears that I was not coping very well with the increased pain and high workload.

It is so frustrating that nothing is being or can be done for the endometriosis/adenomyosis, continuing to grow, especially in my bowel. The pain, IBS symptoms and twice monthly bleeding are getting harder to deal with, especially with the increase in migraines and sinusitis associated with weather change, fibromyalgia and a higher workload.

The specialists continue to say, let's wait for another three months and see. They don't want to know how the endo/adeno pain and symptoms compound my other health problems.

It's reminiscent of the 10 years I struggled to get the first diagnosis of severe endometriosis - the pain was not all in my head, despite the huge number of doctors and specialists who said exactly that. The endo covered the surfaces inside my pelvis and stuck them all together with adhesions.

Still, I must wait and deal with the growing endo/adeno and the compounded fibro pain every day, until the time they'll let me have everything in my pelvis removed. I can't exactly remove it all myself.

I have a good GP, thankfully. One who looks at the whole patient, and doesn't just treat each symptom separately.

He saw through my pain-tears from the just-sprained ankle to the overloaded and not-coping me underneath. It's the first time in three years where I haven't been able to manage the ongoing pain levels from all of my chronic diseases. This doc is amazed and pleased with how I get by with very little medicated help - and still work, albeit a light workload.

So, a bit of prescribed breathing space, increased vitamin B, some advice to slow down and reduce my load, to hopefully get a better handle on pain management again.

As for my poor ankle, sprained badly for the third time, I have to watch for complications (possible sliver of bone or detached tendon), put up with Raynaud's symptoms for the first few days while icing the big bump, and hobble around with a crutch or two, being careful not to trigger the costochondritis or sciatica.

At least the crutches are purple, and purple makes things so much better.

Monday, 17 March 2014

When viruses attack

For normal, healthy people, a virus is usually a short term illness. You feel terrible for a few days, and perhaps take a week to recover.

For people with other health 'complications', viruses can stick around and make a difficult situation much harder to deal with.

It's frustrating to hear comments and advice such as "You'll feel better in a day or two", or "Just take this tablet and it will let you go on".

Chronic illness sufferers know that these viruses can linger, can develop into worse illnesses, don't respond to 'normal' levels of medication. And viruses always make chronic illness symptoms much worse.

Laid flat

I recently got an unidentified virus. Fever, malaise, exhaustion, brain fog, headaches and body pain. Seemed like the flu, only without the dripping nose and dreadful cough. It threatened a few times to drop onto my chest and morph to bronchitis.

Eventually, it settled into severe sinusitis - just the inflammation, no infection. But, the headaches, oy!

It knocked me out for two weeks while it was trying to make up its mind what type of virus it was. I was going from bed to couch, and back again, sleeping 15+ hours.

I probably should have taken more time off work as the virus made my fibromyalgia and endometriosis symptoms flare. But two weeks was what the doctor recommended.

One week back at work, still with fever, headaches and dizziness, and I've picked up a tummy bug to  knock me down once again.

How do you cope with the extra illnesses?

What do you do when you get a virus or other illness? Take time off and rest, or battle through?

Monday, 13 January 2014

How to quickly manage a costochondritis flare

If you have had costochondritis in the past, it's easier for it to return. Especially if you have fibromyalgia because costochondritis pain is a common 'symptom'.

The following tips can help you take the edge off the costo spikes when it flares, and help you heal faster and get back to your normal routine.

NSAIDs like ibuprofen or Voltaren gel can help reduce inflammation, and help you to get a handle on the pain quicker than toughing it out.

Get help. Ask for help to open doors, lift things, open jars and bottles, clean a house and shop. Movements that intensely use the chest muscles make the inflammation and pain worse. Avoiding aggravation by asking for help with these movements will let you recover quicker, even though you may feel silly asking! 

Relieve the chest pain. Hot or cold packs, gentle stretching, warm baths, and gentle movement relaxes the tight muscles, reduces pain, and ensures good blood flow to the affected areas.

Follow these stretches and exercises to open your chest, relax the muscles, and reduce pain.

Relax and de-stress. Hard to do when in pain, but very effective in reducing pain. Take some time to meditate or run through progressive relaxation exercises. Slow and deep breathing into your belly will also relax the muscles, encourage blood flow and healing. Take a bath, or lie down with a heat or cold pack on your chest, and relax.

Longer term costochondritis?

For those who have costochondritis longer term or as a symptom of another underlying illness (like me), lifestyle changes and more regular stretching and exercises are necessary to prevent bad costo flares. 

Stress reduction, posture correction while standing or sitting, avoiding heavy doors, lifting correctly, limiting heavy lifting, using aids for opening tight jars, using a backpack instead of a shoulder back, regular stretching and gentle exercise, a good mattress and healthy sleeping routine, are all extremely important in preventing a flare.

Being overweight can make costochondritis worse, especially if you are a woman. But you need to be careful of what exercises you do so as to not strain the chest muscles further. Push ups? Ouch! 

Monday, 6 January 2014

So what is costochondritis?

One of the more popular topics here is costochondritis, a tough and very painful illness to deal with. I've struggled with it on an off for over 25 years as a symptom of fibromyalgia.

Note: I am not a doctor. See your doctor immediately if you have any chest pain to rule out more serious illnesses!

Costochondritis is the inflammation of the cartilage in the rib cage and the surrounding soft tissue (tendons, muscles). It is very painful, often causing panic when acute pain occurs on the left side of the chest, mimicking a heart attack.

Most occurrences of costochondritis occur with physical damage or a viral infection in the lungs.

Usually costochondritis will go away with rest, movement modification and physical therapy after a couple of months.

What causes it?

Moon at sunsetThe exact causes for costochondritis are unknown.

Physical trauma such as a car accident, bad posture when lifting heavy loads, continual physical work, or viral chest infections are all thought to be causes of acute costochondritis.

Fibromyalgia sufferers often develop chronic costochondritis.

Chronic costochondritis is very difficult to diagnose, with doctors often resorting to prescribing anti-depression medication, not believing the patient's continual reports of pain.

Knife-like pain can be felt in the sternum, the sides of the ribs or coming through to the front of the chest from near the spine. You may also feel like you have a constant band of pressure around your rib cage.

These areas are usually extremely tender and sometimes swollen when physically examined.

Twisting movements with the torso, or even breathing deeply can cause acute pain to 'spike' in the chest area.

Diagnosing costochondritis

Costochondritis is difficult to detect. Many doctors seem to be completely unaware of this disease, and are required to rule out a number of other problems before diagnosing costochondritis. This results in a large number of visits to doctors, specialists and a number of potentially very expensive tests being performed.

A chest xray, MRI or bone scan may show inflammation of the cartilage in the ribcage or surrounding tissue. Inflammation may be visible or palpable as swollen areas around the chest, typically at the sternum. A blood test may show the presence of inflammation somewhere in the body.

How is it treated?

Typical treatments for costochondritis include applying ice or heat, rest (but not necessarily bed-rest), using anti-inflammatory medications, anti-viral or anti-bacterial medication for underlying conditions, cortisone injections into the inflammed cartilage and in extreme cases, surgical removal of nerves or other such invasive procedures.

The most effective treatment for the majority of people is anti-inflammatory medication, however, as concern grows about this group of medication, alternatives are being sought for longer-term treatments.

Anti-depressants, sleeping medication or muscle relaxants may be prescribed to help you sleep at night, and deal with the ongoing pain.

Some sufferers have had relief from acupuncture, physical therapy, massage, or herbal anti-inflammatory medication and diet changes. Although, only massage and physical therapy have worked for me.

Costochondritis can re-occur, especially if care is not taken to slowly return to normal activities over several months after the pain and inflammation subsides.

Costo is yet another illness where treatments really depend on each individual. What may work for some, may not work for you.

Natural treatments for costochondritis, lifestyle modification to reduce stress, stretches to relieve chest pain, and changed working environments or hours of work help many chronic costochondritis and fibromyalgia sufferers.

Try a range of therapies, stretching and exercise regimes to find out what works best both to get past your costochondritis flare, and to prevent it from returning.

Sunday, 29 December 2013

Healthier habits - focus for 2014

It's been a tough year, health-wise.

With the endometriosis resurfacing and invading my bowel and the adenomyosis continuing to grow, I've been on the merry-go-round of tests, specialist visits, and different medications. I shudder to think how much time has been spent in waiting rooms!

An increase in teaching workload has also taken it's toll. Saying 'yes' to a temporary evening class for a few months meant a lot more stress and fibro flaring, especially when my teaching days start at 8am.

So, instead of focusing on health in the last few years, I've been focusing on work. And it's showing clearly.

Inflammation flares - sciatic, costo, neuromas, sinus and (in that ordeer), leading to headaches, extreme muscle pain and insomnia. A very hard-to-write affadavit for a family court case threw up lots of rotten memories of my father, triggering the background PTSD and depression, which has yet to subside. Plus substantial weight gain has made all the phyiscal and psychological symptoms worse.

I recently over-drew my spoon (energy) bank, doing far too much in the last couple of months, and right now I'm paying for it.

In 2014, I plan to dial back my work committments a little, focusing on the new business courses first, as they are by far the most challenging.

I'm now in a gorgeous new apartment (yet to be completely finished), which doesn't shake. So I can move on from Fukushima. It also thankfully has less traffic noise. And I'm looking forward to designing a productive food garden on the terrific roof terrace.

The court case has been settled, albeit with a lot more mess than there should have been. So, with some cognitive behavioural therapy techniques, I should start to make headway in knocking the PTSD/depression back down.

By focusing on small healthy habits, I hope to regain some of the health I have lost in the past few years of too-much-work-and-stress.

Some healthy habits I plan to implement this year, focusing on just one at a time for 30 days: stretching daily, walking daily, growing own salad vegetables and herbs, free writing, tai chi practice, meditation, and a few others.

Please do follow me on, or shoot me an email (nifwlseirff at gmail dot com) if you'd like to join me in 2014. 

The Lifetick goal planning site looks nifty, but is currently very lonely (and therefore I haven't used it much). If you would like to buddy up with me on there, just send me an email.

Here's looking forward to a healthier, happier and lower pain 2014!

Friday, 6 December 2013

A holding pattern

Another birthday has passed, and not much has happened on the endometriosis/adenomyosis front.

I will be staying on the combination of Visanne and Mirena for as long as I can hold out against the pain and secondary symptoms.

The ultimate solution is to remove both the uterus and ovaries, as both are contributing to the growth of both the endo and adeno.

Removing just the uterus, won't stop the growth of the endo in my pelvis and inside the bowl, and won't get rid of the cysts in the ovaries which periodically and painfully burst.

Specialists here have outright refused to take out the ovaries on the grounds that I'm still far too young to go into a permanent menopause, even with 10 years of hormone replacement therapy. The earliest they will consider it, is when I turn 45.

I do need to monitor the bowel symptoms. If they seem to become blocked from scar tissue, or have stronger/more regular bleeding from the endometriosis growths inside, then it's been recommended that I have a bowel resection and hysterectomy (leaving the ovaries in). But as this is quite a big op, with short and long-term risks, my pain levels (or blockage levels) need to be bad enough.

So I have to hold out as long as I can.

Although, my current Mirena is now 'out of date' (the hormone levels released into the uterus are lower than when the coil is new), my gynecologist here has asked to simply leave it in, while the Visanne seems to have shut down normal period bleeding. No point upsetting the balance when it is currently 'working'.

Apparently, the pharmaceutical industry put a 'use-by' date on the Mirena, not for health risks, but to make more money - it's extremely expensive to buy it and to insert/change it every 4-5 years.

I find it sad that there is so much emphasis on capitalism in the health and medical industry.

Wednesday, 14 August 2013

Goodbye Lupron

My last month of Lupron is over and done with. And I'm not sorry to see it go.

I won't miss the intense and constant headaches. The cravings. The weight gain. The hot flushes in hot weather. The moodiness.

As it hasn't helped the bleeding from the endometriosis in my bowel, I stopped the injections at 3 months, instead of doing the full 6 month course.

Purple flower, just about to bloomNo point going through head-splitting hell when it wasn't doing what we wanted it to do!

So, back on the combination of Visanne and Mirena. It should stop all period bleeding, except for the monthly bleed from the bowel endometriosis like before.

But happily, without the terrible side effects of Lupron!

My current Mirena is nearly out of date, so it will be replaced at the end of this year. Most likely the hormones that it releases have been too low a level for about a year (as happened with my previous one), which would contribute to the more rapid growth of adenomyosis, and regrowth of the endo.

But the doctors stick rigidly to the rules here - it has a recommended lifespan of 5 years, so they will replace it after 5 years and not earlier.

I've convinced them to put me under for a short time while they remove the old and insert the new. They wanted to do this without any pain killers, let alone a short general anesthetic.

I did that once, and nearly passed out from the pain. I have never felt anything that bad in my life!

The re-start of the Visanne has been a bit rough, although I can't point to the causes of the strange symptoms.

Dizziness, almost fainting, occasional headache, and complete lack of hunger. Could be stress, exhaustion (moving house), hormonal re-balancing, a virus (my immune system is shot) ... any number of things!

After I've moved, the cats are resettled, I have a trip back to Australia.  I'll be glad when the busy-ness of the last and next few months is over, and things are back to 'normal'.