Life after Cymbalta

I thought I would share my medical story with you. Now I don’t do this for sympathy. We all have our challenges in life. I’m doing this so that someone may gain just the right piece of information to help them.

This really begins when I was a teenager, although I had no idea it started back then until I was finally diagnosed late last year (2012).
I was always a really good student in primary school. Top of my class and the same in year 7. The change was subtle. My concentration slowly diminished. I still managed fair grades but not up to my potential. My brain would wander every time I tried to read a book. I’d stare out the window and lose hours worth of study time. I could read a paragraph ten times and not take any of it in. I thought it was normal for me. Didn’t think anything was wrong. I often felt sick at school. I’d go to sick bay just to lay down so the dizziness would stop. I wasn’t sick but I didn’t have the energy I used to have. Again, I thought it was normal.
Once I started work and studying Podiatry I stopped exercising because I felt so tired. I failed second year and repeated. Worked harder and passed.
Again I thought this was just me.
Moved to Adelaide and started working full time as a podiatrist. I loved and still love my job. You’d think I could cope with full time work. Nope! My immune system shut down and I ended up with whooping cough, pustular tonsilitis and colitis all within two weeks. All I wanted to do was sleep for months. In fact I did sleep for months. Work, sleep, work, sleep. Diagnosed with post viral fatigue. First lot of anti-depressants. 3 months plus diet and exercise. Almost back to my mildly fatigued self.
Plod along for a few years. Then along came a baby. A lot less sleep, a lot less exercise. Others more important than me. Finally get the child sorted at 9 months so she would sleep and bam, next lot of antidepressants. Again all I wanted to do was sleep!!! Took them for six months. Diet and exercise and back to half normal. Then the next baby! Sorted her sleep by 3 months. My body crashed again. Next lot of antidepressants. A year later off them again.
Now I don’t doubt I had post natal depression. I do however, believe that the underlying neurological condition played a huge role in this.

Antidepressants again before I fell pregnant with my third child. This time I was so tired and so anxious! I couldn’t sleep but I was tired! Yes there were circumstances in my life that didn’t help. But again, I don’t believe I was actually depressed.

I remember many appointments with many different doctors. Copious amounts of blood taken and a miriad of tests done. Nothing of note in any of them. I must be depressed. Why else would I feel so fatigued?

I continued to take antidepressants after I had my third child. And he was a shocker for sleep!

I have been taking these antidepressants continuously for eight years now! I am still tired, fatigued and feel incapable of working a full week.
Any chance I have I would have a Nanna nap. I could nap for three hours and still wake tired! I started taking cymbalta when my boy was six months old. 60mg a day. Yes it did help with the anxiety and reduced the low feelings but I was still fatigued.

Finally in early 2011 I was diagnosed with chronic fatigue syndrome. This diagnosis is a slow and tedious process. Basically you rule out anything else and then the diagnosis is CFS/ME.

In mid 2011 I started to go down hill again. I began to get pain all over my body and I struggled to work three days a week. I scheduled breaks in my work days so I could nap. I gave up my nursing home work. I slept as much as I could whilst looking after three kids by myself. January 2012 I was constantly at my doctors. I had dizziness, fatigue, excruciating pain in my limbs. He put it down to CFS/ME. I decided to reorganize my work and hire a cleaner and an assistant. This all helped for about three months. There were weeks when I felt ok, when I tried to get back into exercise but mostly I just napped on the couch. By July I could hardly move my limbs to get out of bed each day. There were times I had such a tremor that I couldn’t get the money out of my wallet at the shops. One weekend I had all the symptoms of a stroke. Slurred speech, loss of movement down my left side and extreme fatigue. I slept for about 48 hours straight. In hindsight, I should have gone to emergency.
This was when my GP said ‘hmmm, neuro symptoms are not part of CF!’
Blood tests, MRI and sleep study and finally! Finally! A diagnosis!
Periodic Limb Movement Disorder. Usually this happens only at night, but mine was during the day as well.
The only drug treatment is drugs for Parkinson’s Disease. I’m currently taking Madopar every night. Apparently I was only getting about 1-2 hours sleep a night. Typically the disorder begins in your teens and slowly gets worse as you get older. Apparently because my personality type is high achiever and says ‘you’ll be fine. Keep pushing. Keep going’, mine was not diagnosed early.

Because this disorder was undiagnosed I have been fatigued and treated for major depression most of my life. Because of this undiagnosed disorder I have been on Cymbalta for eight years.

The things that make PLMD worse are caffeine, alcohol, sugar and …….. drum roll please……… selective serotonin and norepinephrine reuptake inhibitors (SNRI) and guess what Cymbalta is!!!!

So the treatment for my ‘depression’ was causing my undiagnosed condition to get worse and for me to slide further and further into ill health.

In January this year I began the withdrawal from Cymbalta. It wasn’t until I was reducing my dosage that I found out how terrible this drug is!
The withdrawal symptoms can be horrendous! Some people are hospitalized for this period. Not a choice I could take in my situation.
It took me weeks to come down from 90mg to 60mg. Sweating, dizziness, mood swings, crying, headache, muscle twitching (surprise!), insomnia, nausea, brain zaps, brain freeze, forgetfulness and my old friend fatigue!
Interestingly, when I was reducing my dosage I managed to sleep better! I actually monitored this with my fitbit. I went from about 17 awakenings town to 9 a night.
The symptoms of withdrawal were pretty nasty for about a week or two until my body settled into a new dosage. I reduced down to 30mg and then started to tip half out of the capsules and then tip out three quarters. I was down to 7mg last week. The next step was no capsules at all.
First two days were fine. I coped well. Then it hit. All the withdrawal symptoms at once! Constantly! You would think that 7mg would not be enough to illicit such a withdrawal response. Apparently I was wrong on that assumption.
I’ve been using fish oil and camomile tea like they are going out of fashion! Apparently they help with brain zaps and dizziness. I’ve been drinking ginger tea or beer to help with the nausea and downing pain relief for the limb pain. My movements at night have increased and I am fatigued again when I wake. I can’t wait to take my tablets at night so I can stop the muscles contracting.
I’m assured it will all settle soon. I’ve not been given a time frame. I have even told it could be months. Wizzz!
I think the biggest thing I’m cranky about is that the drug company knows about the withdrawal symptoms yet these are not widely known within the GP community and are not widely advertised.
According to some reports I have read the FDA are considering removing approval for this drug because of its side effects and difficult withdrawal.

Moral of the story? Push for a diagnosis! Don’t take it as gospel that you have depression. You may have some other primary condition causing depression as a secondary issue.
NEVER take drugs without talking to your GP about side effects or withdrawal symptoms. Steer well clear of Cymbalta!!!!!!

Ps: I apologise if my writing is not up to my usual standard. I’ve spent most of the day on the couch because of nausea, dizziness and pain. I’ll edit it at some point….. Maybe.

Life after church?

Today was hard. In fact it was awful. After eighteen months of arguing, the children’s father finally signed documents relating to custody. He signed them on the day and in the courtroom where we were going to trial. When I left the courts today I was about to cry. I headed straight for the Catholic Cathedral across the road because I knew I wouldn’t be asked if I was ok or what was wrong. I just needed to cry. And cry I did. Long and a little loudly. No one bothered me…….. or should I say, no one comforted me. This did not occur to me until I was about to leave the church. But the feeling was that something was not right with this scenario.

What does this say about our church, our Christianity?

What does this say about our world today?

I know what it says about my relationship with the church. That has been on tender hooks for years.
Our modern church no longer provides the spirituality, the community, the family for me. I still believe in God, in Jesus and I have spirituality in my life. I live as a Christian. However, never again will that spirituality involve the church. Sad really.

Sometimes your children surprise you!

Sometimes, when your kids are at their lowest of low, when you don’t know what you can do to help them, they pick themselves up and shine!

My beautiful girl, 13 years old, stood up to her dad. She had been stressed for months. Seeing a psychologist. Having regular visits with the school chaplain. She cried and cried when she came home from the psychologist Monday. Lamenting the fact that she couldn’t change her situation.
Well, she did!
When he came to pick her up she was petrified. She wanted nothing more than to lock herself in her room. His negative behaviour had become too much for her to bear. She didn’t think she could even look at him she had such rage.
But she did.
She came out from her room. Tears streaming down her face, her hands shaking and confronted him.
At first he resisted. He told her to just get in the car. She stood firm! She stood firm!
When he pushed more, she stood firm.
Eventually he agreed to talk.
For thirty minutes she respectfully explained why she did not want to go to his house anymore, why she did not want to see him.
To his credit, he listened. He accepted her words.
She, at thirteen, offered solutions and put boundaries in place. He listened!!!
She outlined her back up plan, the consequences for him not following the boundaries.
She showed compassion when he became upset. She said ‘I understand what you are saying’.
She compromised with him on the timing of visits.
She showed respect, compassion, strength and wisdom beyond her years.
I am so proud of my girl and so grateful to those who have helped me show her the right path to take and give her the courage to take it.
The first step is always hard. She did it!!!!!

Play Nicely!

We are so rushed these days.  Especially at this time of year.  The stress mounts for everyone!  Financial stress – how to pay the bills before Christmas comes.  Have you purchased enough gifts for each family or friend?  How are you going to pay for all the travel??  Then there’s the emotional stress.  Ahhh crap, do I have to see Aunty ?? and Uncle ??, they’re just going to annoy me again!  Or maybe you are seperated.  Working around court orders or trying to negotiate arrangements for the kids for holidays.   Work Stress – have to get it all finished before 25th December!     Expectations – is your house perfect for visitors???

It’s ok, life does go on after Christmas.  We can go back to being nice to each other, back to not rushing the kids, back to letting that person take the car spot you were vying for.   Back to a calm energy.

OR………………………….

We could start now!!!

Lets try to be nicer in our daily transactions with each other.  Lets be considerate of others situations and not transfer our stress onto them.  Lets smile and say hi.  Lets let the kids be late, let them play a little longer.  Calm the energy around us and reduce the stress in our lives leading up to Christmas.  Lets not buy into the frenzy and just relax.  Take the time to look around us and enjoy each other.

xoxo

Frustration and anger

So, forgiveness is a one off thing?
Hell no!
It’s forever changing with each situation. I’m currently struggling with issues surrounding a custody battle in court. Today I’m super angry and frustrated. Not able to forgive today. I believe I have forgiven the behaviors of the past but this year sees me more angry and frustrated than ever. This makes forgiveness hard. There are times when forgiveness does not come. Forgiveness is battered and torn by repeated onslaught by opposition. In these times, I find, it helps to know that someday, one day, I can pull forgiveness out again.

Forgiveness

Forgiveness. As a Christian, it’s something I have been taught from an early age. I must admit the focus for me back then was God’s readiness to forgive me and Jesus’s sacrifice for our sins. As I grow older I have learnt that forgiveness should begin with those closest to you. Forgiveness of self and others. How can we ask for forgiveness from God if we are not ready to forgive others?
Personally, I find the every day little things fairly easy to forgive. This makes for a much more positive and rewarding experience of life. The big things, however, are a little harder to forgive. There are times when I can forgive a big thing readily. Almost immediately. There are other times when it takes me months to forgive.
There are times when I thought I had forgiven only to realize I still harbored hurt and resentment. One of these times shocked me the other day. Hearing the voice of a friend I had fallen out with resulted in tears and confusion. Why was I crying? I’d laid all this to rest months ago. Was I still upset with my friend? Was i mourning the loss of the friendship? Apparently not. After a few days of mulling over the situation I realized I had not properly forgiven myself or my friend. So I stopped, used my version of prayer and energy. Forgave, asked for forgiveness and felt at peace with the situation. When I spoke with a couple of people about this they asked ‘but did your friend say sorry? Ask for forgiveness? Did you tell them that they are forgiven?’. This is not the point. Forgiveness doesn’t have to be given only when asked. Forgiveness can be given freely at any time. Does my friend know I’ve forgiven? Probably, hopefully, but it does not need to be said.
So, does forgiveness mean the friendship is rekindled? In this case, no. Forgiveness also comes with a learning attached. Learning that forgiveness may mean letting go and not allowing yourself to be in the same position again is the start of forgiving yourself.

Being late on a regular basis is just plain rude!

I’m sitting here waiting for a patient yet again.   This particular patient is always late.  Ten minutes late this time.  Why are some people always late?   Do they think their time is more important than mine?  Common courtesy would dictate a phone call or txt at least!    We all have such busy lives these days but that does not mean our manners should go out the window!   My mother taught me to be on time where ever possible.  As a practitioner, I try my hardest to be on time.  Waiting in the doctors rooms is not something I enjoy and therefor try not to do the same to  my patients.   There are the odd times that I am running late because a patient unexpectedly needed more care than usual.  I usually explain this to my patients and they are all not worried as I am usually on time. 

I think I’ll refuse to see this late patient today.  I’ve  managed to write a blog and take some phone calls while waiting.  Now 16 minutes late……………………. sigh