Chronic Fatigue Syndrome, Chronic Pain, Depression, Disability, Fibromyalgia, Fibromyalgia Blog, fibromyalgia warrior, Health, Spoonie, Trigger Point Injections

My Long Journey to Diagnosis

To talk about my journey to diagnosis is important as it’s just as traumatic as the diagnosis itself. Many months, lots of doctors, lots of visits, lots of unnecessary painful medical procedures and tests, lots of costs involved, lots of heartache and many painful moments.  As Fibromyalgia awareness is increasing, I hope the journey to diagnosis will be a far easier one in the future.

So, with that I take you back to a time when I had little to no health issues. A time when my life was not filled with pain. I had a successful career which I had worked extremely hard at obtaining. I was happy. I was a working mother of three children, successfully balancing my career and my home life. Life was good. It wasn’t without its stresses, but they were manageable. I suffered from asthma since childhood and developed the odd case of bronchitis here and there.

Somewhere around 2007, I started to suffer from Restless Legs Syndrome, although I didn’t know the name at the time. I ignored it, thinking that it would go away on its own.

In April 2008, I developed severe abdominal pain and was taken to the emergency room.  Various tests and a sonar were done, and I was referred to a surgeon. The surgeon told me that I had a polyp growing on the body of the gall bladder, and recommended that the gall bladder be removed. I went ahead with the surgery, a laparoscopic cholecystectomy. I remember waking up from the surgery and feeling severe pain in my neck and shoulders which would not go away. The surgeon explained that it was the gas, which was used to inflate the abdomen during the procedure, working its way out of my body. 

This is the point that my journey with pain began as this pain didn’t ever leave

After this, the Restless Legs got progressively worse. My legs wouldn’t keep still, and it was severely affecting my sleep and everyday life. I started to develop insomnia as a result of it. The pain in my legs and body was intense. I began suffering from severe headaches, nausea, and dizziness. Even if I were able to fall asleep for a short time, my husband would comment on how my legs would be continually moving throughout the night. I was battling to function properly during the day due to fatigue and chronic pain. I developed severe muscle spasms in my back and neck.

I consulted with my General Practitioner who did a number of blood tests and diagnosed it as Restless Legs Syndrome. Medications were prescribed for me to try. Unfortunately, they made no difference on my symptoms and I was then referred a Neurologist.

I saw the Neurologist, Dr Wolberg, in July 2008. He performed a neurological examination, requested further blood tests, an EMG, a lumber, and a brain MRI. The diagnosis of Restless Legs Syndrome was confirmed. He prescribed approximately 5 different medications for me to try. None of them helped my symptoms and in fact some made them worse. I stopped all the medications due to the adverse side effects that I was experiencing.

The Restless Legs were now permanent during the evenings. It would eventually get so bad that my entire body would end up in extremely painful muscle spasms. When this happened, I would often go to the Emergency Room where they would administer medications to help relieve my symptoms.

As time went on, I wasn’t feeling any better, only worse. My muscle spasms were out of control and the pain was so intense. I could barely function normally. On many mornings, I couldn’t even get out of bed.

All I wanted was to know what was wrong with me and have it “fixed” so that I could get back to my life! All I wanted was relief from the agony I felt!

Eventually, I could not handle the cycle anymore and ended back at the Neurologist, Dr Wolberg. He prescribed different medication. After taking this medication for three days, I started experiencing severe side effects and ended up at the Emergency Room once again. I was admitted into hospital under the care of a Physician, a Neurologist (Dr Martinus), and a Psychiatrist. I spent seven days there, where they performed all sorts of tests on me including a brain MRI, lumbar puncture, hundreds of blood tests, etc. My medication was altered. I was seen by a physiotherapist who managed to help with some of the extremely painful spasms. 

My boss came to visit me while I was in hospital which I thought was a wonderful gesture. Well it wasn’t … he merely came to hand me my retrenchment papers!  People never cease to amaze me. I could barely sit when I met with him due to a severe headache from the lumbar puncture that I’d had earlier that day but business is business, as they say, so I signed for them and he was on his merry way. With that, my depression worsened even further. At the end of my hospital stay, the psychiatrist recommended I spend some time in the psychiatric unit where I would be treated for depression. I agreed to go, until I got there and realised that it was like a prison. I didn’t need that kind of treatment!!!  And so, with that I was discharged from hospital with a “clean bill of health”. No answers. Nobody telling me what was wrong!

To get all the results from the tests performed in hospital, I contacted Dr Martinus, the Neurologist. Dr Martinus was extremely rude to me! He told me I needed to phone my original Neurologist, Dr Wolberg, to get the results. I phoned Dr Wolberg’s rooms and they didn’t have any of the results. Once they’d gotten all the results from Dr Martinus, they phoned me and told me that everything was fine. I asked for copies of the reports. On the brain MRI report, I noted that they detected “white spots on the brain”. Dr Wolberg told me this was nothing to be concerned about and I wouldn’t need to have the scan repeated. Interestingly, the treating Physician at the hospital phoned me to tell me that I needed to have the MRI repeated in 6 – 8 weeks’ time and Dr Martinus phoned to tell me that I needed to have the scan repeated in 6 months’ time. Confusion reigns supreme!

Anyway, the restless legs and muscle spasms continued to worsen, and I was eventually admitted into hospital once again. While in hospital, the doctor decided to do a neck x-ray and MRI. Various problems with the neck were found, like early facet joint degeneration, decreased cervical lordosis and bulging discs. I was seen by a Neurosurgeon who told me to take my scans to my Neurologist, Dr Wolberg.

While waiting on an appointment to see Dr Wolberg, I decided to continue with physiotherapy as it had helped a little while in hospital. After some sessions, the physiotherapist told me that I was not responding to the physio at all, and that he’d never seen such bad muscle spasms in the neck, shoulders and back. His recommendation was that I urgently see my Neurologist.

I sent Dr Wolberg copies of the reports and told him about the recommendations from the Neurosurgeon and Physiotherapist.  After reviewing everything, he told me that I needed to see a Rheumatologist and referred me to Dr Dessein. Dr Dessein had an awfully long waiting list for an appointment, so I put my name down and asked them to contact me if they had any cancellations, as I needed an urgent appointment.

Life goes on and in the interim, I had a family to look after and a job to uphold, but still the pain was unrelenting. One morning I woke with the most extreme muscle spasms. So bad that I could hardly walk. I was so scared and desperate for help! I asked Dr Wolberg for advice. He reiterated that I needed to see a Rheumatologist and he would phone Dr Dessein to try get an urgent appointment for me. His secretary called me back, an urgent appointment was available, and I needed to phone Dr Dessein urgently. Upon phoning them, I was told that they had no appointments. Did I mention that I was in extreme pain at the time?? As a last resort, I went to my GP who gave me medication and an injection for pain.

Two weeks later, I was suffering severely again with restless legs. My legs would just not keep still. They carried on throughout Saturday and Sunday, both day and night. By Sunday night, I was so desperate that I went down to the Emergency Room. By this stage, I think they started to question whether I was just a drug seeker, as I was not given any pain medication. On the day when I wanted to put a gun to my head and blow it off as the pain was so severe. Now I was considered a drug seeker too. Did they not realize how easy it was to get drugs on the street, and if that was what I was after, then I’d be going to a dealer and not bothering coming to a hospital for a mere Tramal drip!!! Nevertheless, they didn’t care. They phoned Dr Wolberg, who told them I needed to see a Rheumatologist. Absolutely nothing was done to help me. No …. I should just wait to see a Rheumatologist. With that I was sent home.

By Tuesday I was in unbearable agony. It was then that I decided to go to the hospital where Dr Dessein, the Rheumatologist, was at. This hospital was quite far away but I figured it would be worth it in the end.

I was admitted into hospital by the casualty doctor, under the care of a Neurologist, Dr Rowji. I spent the first night in High Care. The following morning, I was transferred to the ward and was seen by Dr Rowji. I explained EVERYTHING to him including Dr Wolberg’s recommendation that I see a Rheumatologist. Firstly, Dr Rowji told me that he doubted I had Restless Legs Syndrome and that there wasn’t enough evidence to substantiate a visit with the Rheumatologist. He would collect all my results from Dr Wolberg and Dr Martinus, and we would take it from there. He seemed very friendly and helpful.

The following morning, he mentioned that he was still waiting for all my results but that some of my results were back. One came back stating I had no arthritis. Yay 🙂.

Dr Rowji came to see me that evening. He informed me that all the results were back and that there was absolutely nothing wrong with me! He told me that Dr Wolberg had never suggested that I see a Rheumatologist. He told me that I should stop going around looking for a Neurologist to find a problem with me. He told me that my problem was psychiatric and that a psychiatrist would be coming to see me. He then asked me if I’d ever been a rugby ball in a previous relationship, as the “white spots on the brain” were caused by a brain injury! He then proceeded to tell me to stop wasting his and my time. I was so shocked and reminded him that it was in fact Dr Wolberg who had told me that I needed to see a Rheumatologist. I had it in writing from him and could produce it for Dr Rowji. He dismissed me, telling me again that this was not the case and that I would not be seeing a Rheumatologist in hospital. Once again, he very rudely and abruptly told me to stop wasting his time. He asked me if I wanted to see a psychiatrist or not, to which I replied that I would not like to. I ripped the drip out of my arm and left the hospital in tears. I must mention that none of these medical services are government-funded. They are all privately paid for. A patient paying a lot of money for a service and this is the way they are treated!! Dr Rowji still had the audacity to bill me an absolute fortune and was paid for his “services”. I did report him for his disgusting conduct but as doctors are so well protected, nothing ever came of it. 

Again, I had been through so much, done everything by the book. All I was looking for was help! And again, it was just not meant to be.

I fell into a deep depression after this. The pain was unrelenting, the restless legs were unbearable, the headaches, the confusion, the insomnia, the muscle spasms … it was nightmare … and it wasn’t going anywhere. I started to consider suicide. I took an overdose of sleeping tablets one night and woke up in a hospital ward. I was discharged the following day with a script for new anti-depressants and a refill of sleeping tablets! What was wrong with all these medical professionals? Why was nobody listening?

I finally got to meet with a Rheumatologist, Dr van Zyl, in July 2009. He was a God send. Within 10 minutes of speaking to him, he told me that I had severe Fibromyalgia! That was that! 10 minutes was all it took. I was not crazy! It was not all in my head! Over the next couple of months, he took me off all the medication that I was on and put me on new medication which was tweaked here and there. He performed regular trigger point injections. He also referred me to a new Neurologist, who performed regular brain MRI’s and EMG’s. For the first time in a year, I felt hope. During this time period, I managed to get a new job and I was very confident that I was going to get control of this condition and my life would carry on as normal … back to the way things were. I could smile once again 😊

Unfortunately, as luck would have it, things did not turn out that way. Fibromyalgia symptoms are often just too much to bear. They really interfered with my ability to perform my duties at work. The fibro fog was awful. I would forget things that I used to know like the back of my hand. I would get lost in places I regularly went to. I used to drive a lot for my job, and this became unbearable. Sitting at a desk became unbearable. The pain became too great. I could barely remember what I had done from one day to the next. I was becoming a blithering idiot. I’m not sure whether the medication also made it worse, I just knew that I couldn’t carry on like this. I battled to concentrate, and my cognitive functioning was not what it used to be. When I spoke, I would battle to find the words that I was looking for … so bizarre. I was permanently exhausted. After numerous consultations with Dr van Zyl, he advised me to go on disability, as unfortunately there was nothing that could be done to cure or improve these symptoms. As I said before, I have severe Fibromyalgia.

So, with that I went on disability in 2010. I’m no longer under the care of Dr van Zyl as he relocated. I’m now under the care of a wonderful pain specialist who is an expert in Fibromyalgia. This has made a huge difference in my life.

I remain hopeful that a cure for Fibromyalgia will be found and I will then be able to return to the life I once had. I now know that Fibromyalgia is progressive even though some doctors might disagree. I have gotten progressively worse over the years. My cognitive functioning has been severely affected. I am nowhere near the person I used to be, and I really miss that person so much. I can never sit back and accept that I will have Fibromyalgia for the rest of my life. If I accept that, then I would rather be dead, as living with Fibromyalgia is not living … it is merely surviving one day to the next.

With all the medical gaslighting I had to endure in my journey and the sad fact that doctors are still medical gaslighting patients with Fibromyalgia and other Chronic Illnesses, I made the decision to share my story, raise awareness, educate, and help fellow sufferers. This behavior by doctors needs to end! It is completely unacceptable!

Medical gaslighting happens when a doctor dismisses or trivializes symptoms and then attempts to convince the person that they are caused by something else. They may even tell the person that their symptoms are all “in their head”

3 thoughts on “My Long Journey to Diagnosis”

  1. Oh M G! I am bawling as a read of your journey. I could feel your pain and despair. Your story is similar to mine and I am so grateful for you putting yours out there. There is comfort in knowing you are not alone. THANK YOU.

    Liked by 1 person

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