Fibromyalgia, The Disorder that Changed me Forever by Angelique Gilchrist.
Introduction
My name is Angelique, I live in South Africa, and am a mother of three beautiful souls. I have the most incredible husband who has stood by my side throughout. He’s my rock and I’m forever grateful for him.
I used to work in the rental finance industry as an Accounts Executive. I loved my job. I travelled a lot for business which I enjoyed as I didn’t have to sit in an office every day. My job was stressful at times, but I loved the challenges. I almost always exceeded my targets though hard work and determination.
I was healthy for the most part except for asthma which I developed in childhood, but it was under control. I had the odd cold and flu at times but nothing else. I had an abundance of energy and successfully balanced my career and home life. Being a perfectionist, I was constantly on the go and thrived in this environment.
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| Angelique and her husband |
The Diagnosis
Around 2007, I started experiencing “Restless Legs Syndrome” (I didn’t know it had a name at that stage) and every night my legs would not stop moving. I assumed that it’d go away on its own and tried to ignore it.
April 2008, I had my gall bladder removed due to a polyp growing on the body of the gall bladder. The operation was done laparoscopically. Waking after surgery, I felt extreme pain in my neck and shoulders. The doctor explained that during a laparoscopic procedure, the abdomen is inflated with gas (Carbon Dioxide), and the pain I was feeling was from the gas working its way out.
And so, it began … This pain remained and I haven’t had a pain free day since!
My legs got worse and I developed insomnia which interfered with my daily life. The pain in my legs and body was excruciating. I started getting headaches, migraines, nausea, dizziness, muscle spasms, and extreme fatigue. I consulted with my GP. He ordered lots of blood tests and diagnosed me with Restless Legs Syndrome. He prescribed medication, however nothing helped. He then referred me to a Neurologist.
My consultation with the Neurologist, Dr Wolberg, was in July 2008. He performed a neurological examination, more blood tests, an EMG, lumbar and brain MRI. Restless Legs Syndrome diagnosis was confirmed. Prescribed medication made no difference, and some made me feel worse. I stopped taking all medication.
My condition continued to worsen, and extremely painful muscle spasms began to form. At times, I was in so much agony that I’d end up going to the Emergency Room. Doctors would relieve some of my pain with medication. However, none of my symptoms were going away or getting better. My pain levels kept soaring. Due to this, I couldn’t function normally. The severity of my pain meant that there were many mornings I couldn’t even get out of bed. I wanted to know what was wrong with me so that it could be fixed? I needed this agony to end.
During my second consultation with Dr Wolberg, he prescribed different medications. I had a bad reaction to one of the medications and ended up in the ER. I was admitted to hospital and spent the next seven days there. During this time, a lot more tests were done, including a brain MRI, lumbar puncture, blood tests, etc. My medication was changed again. Physiotherapy was done and I experienced some relief from this. While in hospital, my boss came to visit to hand me my retrenchment papers. Some people …!! With that my depression worsened. My psychiatrist suggested I spend 2 weeks in a clinic working on my depression but once I saw the place, I refused to go. I was then discharged with no answers. It felt like 7 days had been wasted.
A few days later I phoned Dr Martinus (Neurologist) to obtain my test results. Dr Martinus was extremely rude and told me to contact Dr Wolberg (my initial Neurologist) to get the results. Turned out that Dr Wolberg had not received any results and once they got them, they phoned me to let me know that everything was fine. I received a copy of the brain MRI results which noted that “white spots” on the brain were detected. I wanted to know what that meant. Dr Wolberg said it was nothing and I didn’t need a repeat MRI. The treating physician in hospital told me to repeat the MRI in 6/8 weeks and Dr Martinus told me that I needed a repeat MRI in 6 months’ time. Confused much??
A short while later, I ended up back in hospital due to severe pain and muscle spasms. This time a neck x-ray was done, followed by an MRI. The results showed that I had early facet joint degeneration, decreased cervical lordosis, and bulging discs. A Neurosurgeon told me to take all my scans to Dr Wolberg.
While waiting for an appointment with Dr Wolberg, I continued with physiotherapy. Eventually the therapist suggested that I urgently see my Neurologist as he’d never seen such bad muscle spasms and the physio wasn’t working. There were times I felt the physio made the pain worse.
I emailed all my results and recommendations to Dr Wolberg as I was unable to get an appointment with him. Dr Wolberg told me that I needed to see a Rheumatologist and referred me to Dr Dessein. This doctor had an extremely long waiting list. I put my name down and asked them to phone me if any cancellations arose.
I felt so defeated and confused. I had to carry on as usual regardless of what I was going through.
The pain continued to worsen. My GP would at times give me an injection for the pain. This was only short-term relief and the cause was not being treated. I ended up at the ER again due to extreme pain. I noticed a difference in the way the staff were treating me. They phoned Dr Wolberg who explained to them that I needed to see a Rheumatologist. I was refused any treatment for the pain and in fact was treated like a drug seeker. My pain was so intense that I was contemplating suicide and now I was getting treated like this!?
Why is it that when you have diabetes, you get treatment? If you have Epilepsy, you get treatment, etc. etc. However, if you are suffering from Chronic Pain, you will not readily get treatment and will rather be treated like a common drug addict or drug seeker.
A couple of days later and the pain was unrelenting. I couldn’t function at all. I drove to the Milpark hospital where Dr Dessein was based. This was far for me to go but I needed to urgently see a Rheumatology as I couldn’t carry on living this way. I was admitted under the care of a neurologist, Dr Rowji. I spent the first night in High Care and was transferred to a ward in the morning. I was seen by Dr Rowji and explained everything to him in detail, making sure not to leave anything out. His first comment was that he doubted the diagnosis of Restless Legs Syndrome and there wasn’t enough evidence to substantiate a consultation with the Rheumatologist. Besides this, he seemed very friendly and helpful.
When seen the next morning, he mentioned that he hadn’t received all the results but was able to tell me that I had no arthritis. Finally, some good news. That evening, Dr Rowji was back to see me. This was his feedback:
- All results were back and there was absolutely nothing wrong with me
- He claimed that Dr Wolberg had never suggested I see a Rheumatologist
- I should stop looking for a Neurologist to find a problem with me
- My problems were psychiatric, and a psychiatrist would be coming to see me
- He asked if I’d been a “rugby ball” in a previous relationship as the “white spots on the brain” were caused by brain injury!
- He told me to stop wasting his time
Feeling completely shocked was an understatement. I tried to show him proof that Dr Wolberg had referred me to the Rheumatologist, but he dismissed me, telling me that I would not be seeing a Rheumatologist. Again, I was very rudely and abruptly told to stop wasting his time. I was completely broken by this stage. I ripped the drip out my arm and left in tears. Just a quick side note, this medical treatment is not government funded or free. We must pay a fortune on medical aids and these doctors are private and we end up paying a fortune to see them.
I fell into a deep depression. Unrelenting pain, restless legs, insomnia, headaches, confusion, muscle spasms … I couldn’t live like this. I took an overdose and woke in hospital the next day.
In July 2009, I finally got to meet with a Rheumatologist, Dr van Zyl at Unitas Hospital. Within 10 minutes, he diagnosed me with severe Fibromyalgia! I was not crazy, and it was not all in my head! Finally, someone that believed and understood what I was going through. Dr van Zyl put me on medication which was changed here and there and performed regular trigger point injections. I was seen by a different Neurologist to monitor the white spots on the brain. I was so excited as I was convinced that this was going to be a thing of the past. I managed to get a new job and could see the light at the end of the tunnel.
Sadly, due to the severity of my Fibromyalgia, it was recommended that I be medically boarded. The Fibro symptoms can be bad and can interfere a lot with your functioning. My worst symptoms experienced were:
- Fibro Fog. Completely forgetting information that I used to know very well. I could barely remember what I had done the day before. I was becoming a blithering idiot.
- I battled to concentrate, and my cognitive functioning was not the same anymore.
- When speaking, I would battle to get the words out that I was trying to say.
- During a conversation, I would often forget what I was saying in the middle of a sentence. It never came back. My brain went blank.
- I used to be on the road often as mentioned and now I was getting lost in places that I drove to often. This was a terrifying experience.
- Sitting in one position for an extended period was unbearable.
- The pain was unrelenting and worsened.
- I was permanently exhausted due to the Chronic Fatigue Syndrome.
- Headaches all the time.
- Battling to walk due to the extreme pain.
There was nothing more that could be done for me. There is no cure, and little could be done to improve my symptoms. I have severe Fibromyalgia. I went on disability in 2010. Dr van Zyl left and I am now under the care of Professor Meyer who is a pain specialist and an expert on Fibromyalgia.
I remain ever hopeful that a cure for Fibromyalgia will be found. I refuse to accept that it is incurable. One day I will return to the person I was and will be able to enjoy life to the fullest again.
Why Did I Create Fibro Ramblings Blog?
After what I went through to get a diagnosis and a treatment plan, I decided that I needed to try and raise Fibromyalgia Awareness. It is such a terrible condition. Not only do we suffer from the condition itself, but we too must suffer at the hands of people who don’t believe that Fibromyalgia is real and presume we are making it up! This treatment comes from doctors, friends, family, and complete strangers. We constantly feel like we must prove that it is a real illness. “Oh, but you don’t look sick” … such a common statement. Fibromyalgia is an invisible illness and we end up feeling so alone with little to no support. People can be so ignorant and insensitive at times. I wanted to create an environment where I can share my experiences and knowledge about Fibromyalgia in the hopes of helping people suffering from Fibromyalgia. I too hope that I can educate people about the condition. We don’t want pity from anybody, we just want them to understand what we are going through. If I can help just one person through my blog, then I will be happy with just that. One of the features that I am doing on my blog is allowing people to tell their stories and show their faces. Fibromyalgia affects everyone ... the young and the old, male, and female … there is no discrimation. Telling our stories is healing and is part of our diagnosis acceptance. Knowing that you are not alone also makes a huge difference. I am so honoured that I can play a part in the lives of Fibromyalgia sufferers.
Her feature series: Faces & Stories of Fibromyalgia
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| Angelique Gilchrist |
