Tag Archives: Pain

Week 7 No Buy Challenge: Celebrations, side effects and PEM

19 Jan 16
Megan
, , , , , , , , , , , , , , , , , , , , , , , ,
No Comments

Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch... Water and tea, tablet and headphones, tv controller...

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

  • I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.
  • High levels of pain down the inside of my limbs (especially my left leg).
  • Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?


And the weather changes again…

22 Nov 15
Megan
, , , , , , , , , , , , , , ,
No Comments

The weather here has been up and down with some extreme heat over the last few weeks. Unfortunately, this weather isn’t conducive to me being at my best.

I have been struggling a lot over the last week in particular with very high pain and fatigue levels. Keeping up with the daily blog posts and doing a minimal amount of other work or appointments takes most of my energy and the rest of the time has mainly been spent doing mindless screen activities (tablet games or tv).

My step count has dropped again to a minimum of 2,000 (half the minimum I’d built up to) but I’m not too concerned about that. The thing I’m most to concerned about is if this is a precursor to a crash like I had last year (which I haven’t fully recovered from even now).

I’m hoping by proactively resting and listening to my body I can avoid a major crash.

The problem is that I still don’t really know what caused the crash last year so I don’t know what I can do to avoid it.

On the other hand, I don’t want to go backwards because I’m being too cautious… so I am still trying to maintain a minimum level of activity and because it’s the newest and most meaningful addition to my routine, I’m trying to prioritise my work activities.

Now it’s time for another rest…

Do weather changes affect your health? What steps do you take to minimise the impact?

Just One of Many: Difficult decisions with Invisible Illness

09 Sep 14
Megan
, , , , , , , , , , , , , , , , , , , , , , ,
No Comments

This year’s theme for Invisible Illness Awareness Week is “Just One”.

Invisible Illness Awareness Week 2014

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

Foggy Frog and Friends Haikus

27 Nov 13
Megan
, , , , , , ,
No Comments

Foggy Frog is here
Heaviness and confusion
Moving through the fog

Slowly awaken
Feel Gnawing Gnats all over
Whole body aching

Body on fire
Burning Bats surrounding me
Pain radiating

Knives in chest and hips
Pain is excruciating
Stabbing Spiders here

Needle Nematodes*
Numbness with pins and needles
Sleepy limbs attacked

*Needle Nematodes evolved into Needling Numbats January 2014

Tips for treating patients suffering from chronic pain

26 Nov 13
Megan
, , , , ,
No Comments

Definitely good advice for doctors! Just need to get the message out there.

Spinning and Sinking…

09 Nov 13
Megan
, , ,
No Comments

I wrote this after experiencing some weird sensations during my meditation the other day…

The world is spinning. As I close my eyes I am sinking. I can feel the ground below me giving way,as my body slowly gives in to the fog and the weight. Foggy Frog and the Gnawing Gnats are having a party today and I’m not sure my body can take any more of this.

I know I’ve done too much in the past two weeks and I know that has made me weaker in my fight against Foggy Frog and the Pain Gang. I know that as the Pain Gang get stronger and Foggy Frog blows the draining fog further over me, my shield of brightness is beginning to strain. But surely the warmth of the sun and the songs of the birds will help soon!

Without them I may just have to give in for now and ride this party out. Surely they’ll tire soon and I will get some proper rest.

(c) Megan S, November 2013

Introducing Foggy Frog and Friends

04 Nov 13
Megan
, , , , , , , ,
No Comments

Let me tell you about these creatures that have come to visit me. These are the ones that are causing all the problems and won’t go away.

We’ll start with their leader, Foggy Frog.

Foggy Frog is the one that’s always on my shoulder. He’s weighing me down and makes it feel like I’m pushing through mud whenever I’m trying to do anything. Somehow, he’s also managed to get into my head and muddle everything up. Because of this I have trouble remembering things and can’t focus on anything for more than a few minutes at a time without zoning out.

His constant companions are the Gnawing Gnats.

These guys have completely taken over my body. They are constantly running around nibbling here and there, causing my whole body to ache. Occasionally they bite harder causing my muscle to twitch and shake.

Although Foggy Frog and his Gnawing Gnats  have become permanent residents in my body, they are not the ones that cause me the most pain. That award goes to their friends who come to visit quite regularly; almost daily in fact…

  • The Stabbing Spiders; who have taken a strong liking to visiting my chest, stomach and joints and using their razor sharp blades at the worst possible times (like when I’m trying to sleep;
  • The Burning Bats: who tend to join the Gnats everywhere and make the pain radiate through the muscles; and
  • The Needle Nematodes*; who cause the excruciating pain and numbness of pins and needles.

All in all, Foggy Frog and his pain gang are a hard group of creatures to deal with on a daily basis.

* Needle Nematodes evolved into Needling Numbats January 2014

I’ve found that by creating these characters, to describe each of the main types of pain and the overwhelming fatigue and brain fog I deal with on a daily basis at this stage, I’m better able to understand what affect each of them are having on my body.

Do you ever get visits from Foggy Frog or any of the members of his pain gang?

If so, do you have any useful techniques or helpers to deal with them?