The Pillow Project

A few weeks ago the issue of sleep was discussed during the Chronic Pain Self-Management Program. Aside from discussing mattresses and pillows, proper sleep positions were also brought up. Whether you sleep on your side or your back the general idea is that every part of your body should be supported by the mattress or by pillows so as to relieve any pain; and according to the following diagrams, many pillows may be required.

As a side-sleeper I attempted placing pillows as shown in the first diagram, but for the life of me, I could not sleep with so many pillows! I am a tosser and turner, and so I was constantly fighting with the pillows. Having so many pillows kept me so warm, I was waking up in a sweat. In other words, a pillow here, there and everywhere does not work for me.

So I gave the pillow project a rest for a week, and then gave the one pillow placed between the knees, lower leg and feet a try. But I still felt all tangled up like in a washing machine, and too hot.

Conclusion: Although I still have pain issues, waking up from being tangled in blankets and pillows or from sweating are not for me. It works for another of the participants in the pain program, but for me, placing two pillows in a V-shape works best. I support my legs by overlapping them and crossing my feet at the arch. Also, I often cross my arms over my chest with my hands resting on my neck and shoulders.

Week 4 Take-Away


Facts and Tips Related to Sleep:

• In people with fibromyalgia Alpha waves (that occur during wake-up) occur during deep sleep, therefore interrupting sleep.
• Proper body position and movement applies to bedtime too. Make sure your get into bed in a way that does not strain your back.
• Proper support is essential; use pillows for support, or find a position that works best for you and aids in reducing pain.
• The brain loves routine and habit, so try going to bed and waking-up at the same time each day (give or take no more than a hour). Establishing a before bed routine is also helpful in getting your brain to wind-down and ready for sleep (e.g. turn off the TV, brush teeth and wash face, some light reading, go to bed, hopefully fall asleep.)
• If you can't sleep for more than 20-30 minutes, get out of bed and do a boring activity, such as playing solitaire or reading something mundane until you feel sleepy.
• Avoid getting in bed until you feel sleepy, since your bed should be for sleep and sex only.
• Avoid using a computer or watching television in bed. These are activities the brain associates with wakefulness, and will interfere with associating your bed with sleep.
• Avoid eating 2-3 hours before bedtime, and keep spicy foods for lunch. Your tummy will be working overtime which will mess with your sleep.

Tired of Being Tired or What is Chronic Fatigue Syndrome?

The symptoms of fibromyalgia (FMS) and chronic fatigue syndrome (CFS) overlap to such an extend that it sometimes can be difficult to figure out if you have one, the other or both. The main overlapping symptoms are fatigue, pain, and problems with concentration and short term memory. In fibromyalgia pain is primary and fatigue secondary; in CFS fatigue is primary and pain is secondary. In my case, I have pain all the time and feel exhausted pretty much all the time.

The main symptoms that distinguish CFS from FMS are the following:

• Chronic or frequent sore throat
• Tender lymph nodes
• Chronic low grade fever (between 99 and 100.9 F or 37.3 and 38.3 C)

I started suspecting I had both illnesses due to frequently having a sore or really swollen throat, making swallowing difficult. Also, I often wake up in the middle drenched in my own sweat, which interrupts my much needed sleep, continuing the cycle of feeling crummy. I believe these night sweats are due to the low grade fever.

Having CFS feels like having a never-ending flu. I feel achy all over and exhausted, even though I have not been crazy busy or active. It is pretty normal for me to wake up in the morning feeling more tired than when I went to sleep the night before.

CFS is diagnosed when there is an unexplained fatigue (other possible illnesses have been eliminated) for 6 months or more. Sleep and rest is not refreshing or restorative, and no, a cup of strong coffee (or black tea in my case) does nothing to make me feel more awake. Exercise and too much activity unfortunately make the symptoms worse.

Luckily, on occasion my symptoms do subside for a time and I have days, or even weeks, where I feel great. Lately, this has not been the case, but I remain hopeful that good days are just around the corner. The recent time change and getting up earlier than usual to go to the Chronic Pain program has affected me quite a bit.

As there are no medications specifically designed to treat CFS and FMS, the best prescription is to develop coping mechanisms to help take control of the symptoms and continue living life, albeit in a modified way. This is why I am really glad that I am participating in the Chronic Pain Self-Management Program. It has gives me the support and information I was desperately needing.

Week 3 Take-Away: The P's of Energy Conservation

• Pacing: 
• Alternating between activity and rest. 
• For example, do the dishes for 15 minutes, rest for 10 minutes before taking on the next activity.
• Planning:
• Allocating tasks and activities evenly over the week ensuring that you are active every day, avoiding push-crash cycles.
• Ensuring that fun and pleasant activities are also included for the week.
• Prioritizing:
• Tackling the most important tasks first, and delegating if necessary and possible.
• Posture and Proper Body Mechanics:
• Remember to maintain the natural curves of your body, flex your knees and bend from the hips not the lower back.

And, most importantly, as they tell us over and over again at the Center, 

RESPECT YOUR LIMITS

What is Fibromyalgia?

The form answer: Fibromyalgia is a chronic widespread muscular tenderness and pain that's usually accompanied by fatigue, sleep disorders (restless leg syndrome, frequent wake-ups) and other symptoms that vary for each affected person and may include the following:

• Fatigue
• Irritable bowel syndrome
• Chronic headaches
• Jaw pain
• Cognitive or memory impairment
• Muscle pain or morning stiffness
• Painful menstruation
• Numbness and tingling in the extremities
• Dizziness or light headedness
• Skin and chemical sensitivities

Another symptom that is rarely ever mentioned in books and medical websites is twitching. For me, this occurs when I have been particularly physically active during the day or week and am feeling fatigued. These twitches are rather abrupt involuntary muscle spasms with a varying frequency. Generally if I am occupied and moving, the twitches are less frequent, but increase with fatigue and stress. They are annoying and brisk, and sometimes painful.

A note about restless leg syndrome: Did you know that RLS is not an involuntary muscle spasm? People who suffer from RLS feel a strong compulsion to move their legs to relieve the strange feeling or pain they feel in them. Often when you have RLS you may also have PLMD (Periodic Limb Movement Disorder) which usually occurs at night and is involuntary. If you have ever woken up because you felt yourself kicking, then you had a type of PLM.

Fibro Pain

People with fibromyalgia have a lower threshold and greater sensitivity to pain and will feel it for a significantly longer time.

Generally the pain varies in intensity and location all the time. I would say that my pain occurs around any of the 18 tender points shown in the image below:

My more sensitive regions are around the elbows and knees, and radiate towards the extremities. I hate having my arms grabbed, even lightly, or my lap slapped. My back is where I feel the most pain (points 9 to 16 ache pretty much all the time).

It is best to be gentle with folks who have fibromyalgia.

Week 2 Take Away

Although this tip comes from my Chronic Pain Self-Management Program, it applies to everyone.

Preserve and protect your back at all costs by

1. Maintaining the natural curves of your back at all times
2. Avoid bending you back, that is bending from the lumbar spine. Instead bend your knees and bend from your hips.
3. Avoid twisting your body to grab things around you. Instead shift your weight by moving your entire body. Step toward (applies to both standing and seated positions) the direction you are reaching for.

These actions may take longer to perform, but the benefits are avoiding damage to your vertebrae (priceless and irreplaceable). 

NB: I took the above image from the following website which gives quite a bit of detail on the 18 Tender Points:


http://www.wildwoodinnhr.com/fibromyalgia.html

A year ago, I woke up exhausted and in pain, so much so that I had to call work to tell them I would not be coming in. The next day, I did not feel better so I went to see a walk-in doctor and had blood tests done. I never went back to work.

I have decided to start this blog to address those issues that are most on my mind right now, mainly my struggles with chronic illness. After many consultations with doctors, I was diagnosed with fibromyalgia (FMS) and chronic fatigue syndrome (CFS). Two illnesses that are still highly controversial in the medical field, and which many people still disbelieve and put off as a mental illness like hypochondria.

My main goal for this blog is to track and share what I learn from this program and what I have learnt from the research I have done so far. I will also share my experiences of what I went through up until I was diagnosed. Another for this blog is to let others know that they are not alone, and also to hopefully inform and educate others about what living with this highly unpredictable illnesses is like. FMS are very real and painful chronic illnesses and not "just in the sufferer's head."

 This morning I started a Chronic Pain Self-Management program at the Constance-Lethbridge Rehabilitation Center. On Day 1 we talked about what is Chronic Pain and postural hygiene. Having done my own research by reading, I already knew most of the information presented in the theory part of the morning, which I will discuss in the next post. For me, I learned a lot of new things from the session on posture. A lot of energy and pain can be spared by wearing the proper footwear, keep a tall stance and performing the correct movements when using a chair or getting up from the floor.

The message I want to leave off with today is, as the physiotherapist said this morning, our bodies are machines just like cars and so we must treat them as well, if not better than our cars.