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.