My Long Journey to Diagnosis

Faces of Fibromyalgia My Long Road to Diagnosis Angelique Gilchrist
My Long Road to Diagnosis by Angelique Gilchrist

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 that 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 no health issues. A time when my life was not filled with pain. I had a very successful career which I had worked very 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 had very little health issues. 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 it at the time. I ignored it, thinking that it would go away on it’s 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 it was recommended that the gall bladder be removed. I went ahead and had 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 told me that it was the gas, which was used to inflate the abdomen during the procedure, working its way out of my body. This was definitely the start of my pain journey as this pain didn’t seem to ever leave.

After this, the Restless Legs got progressively worse. My legs would not keep still and it was severely affecting my sleep and my everyday life. I started to develop insomnia as a result of it. The pain in my legs and body was intense. I started to suffer from severe headaches, nausea and dizziness. Even if I was able to fall asleep for a short time, my husband would comment on how my legs would be continually moving. I was battling to function properly during the day due to fatigue and the chronic pain. I started to get severe muscle spasms in my back and neck as a result of this. I consulted with my General Practitioner who did a number of blood tests and diagnosed it as Restless Legs Syndrome and prescribed Pexola and Rivotril.  The medications made no difference on my symptoms and I was then referred to a Neurologist.

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

As the restless legs was 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 end up at the Emergency Room where they would administer medications to help relieve my symptoms. In the meantime, I was not feeling any better. In fact, I was feeling worse. My muscle spasms were out of control. My pain was so intense. I could barely function normally. I had many mornings where 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.

I eventually could not handle the cycle anymore and ended up back at the Neurologist, Dr W. He prescribed a different medication. After taking this medication for three days, I started having some 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 M), 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 changed. 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 as I had a severe headache from the lumbar puncture that I’d had earlier that day. Anyway, I signed for them and he was on his merry way. So with that, my depression worsened even further. At the end of my hospital stay, the psychiatrist recommended that I spend some time in the psychiatric unit where I could get 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” and was free to go on my way. No answers. Nobody telling me what was wrong.

After being discharged, I contacted the Neurologist who I had seen in hospital, Dr M, in order to get the results of all the tests that they’d performed. Dr M was extremely rude to me and told me that I must phone my original Neurologist, Dr W, in order to get the results. When I phoned Dr W’s room’s, they didn’t have any of the results. Once they’d gotten all the results from Dr M, they phoned me back and told me that everything was fine. I asked them to send me copies of the reports. On the brain MRI report, I noted that they detected “white spots on the brain”. Dr W told me that this was nothing to be concerned about and that 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 the treating Neurologist, Dr M, phoned me 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 then a neck MRI. They picked up various problems with the neck, like early facet joint degeneration, decreased cervical lordosis and bulging discs. I was seen by a Neurosurgeon and told to take my scans to my Neurologist, Dr W.

While waiting to see Dr W, 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 had never seen such bad muscle spasms in the neck, shoulders and back. His recommendation was that I urgently see my Neurologist.

I couldn’t get an appointment with Dr W, and sent him through a copy of the reports and told him about the recommendations from the Neurosurgeon and the Physiotherapist.  He told me that I needed to see a Rheumatologist and referred me to Dr D. Dr D had a very long waiting list for an appointment, but I put my name down and asked them to phone 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 up with the most extreme muscle spasms. So bad that I could hardly walk. I phoned Dr W for advice. He told me that I needed to see a Rheumatologist and he’d phone Dr D’s rooms to try to get me an urgent appointment. His secretary phoned me back and told me that I should phone Dr D’s rooms immediately as they had an appointment for me. 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 started 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 got 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 just 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 W who told them that I needed to see a Rheumatologist. With that I was sent home. By the Tuesday I was in unbearable agony. It was then that I decided to go to the hospital where the Rheumatologist, Dr D, was. This hospital was quite far away but I figured that it would be worth it in the end.

I was admitted into hospital by the casualty doctor, under the care of a Neurologist, Dr R. I spent the first night in High Care. The following morning I was transferred to the ward and was seen by the Dr R. I explained everything to Dr R. I told him that Dr W had diagnosed me with Restless Legs Syndrome and that based on my neck x-ray and MRI, he had suggested that I see a Rheumatologist. Dr R 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 said he’d collect all my results from Dr W and Dr M and we would take it from there. He seemed very friendly and helpful.

I saw him the next morning. He mentioned that he was still waiting for all of my results but that some of my results were back. One came back stating I had no arthritis. Yay 🙂. I saw him again that evening. He told me he had all the results back and there was absolutely nothing wrong with me. He told me that Dr W 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 W that had told me that I needed to see a Rheumatologist and that I actually had it in writing from Dr W and could produce it for him. He dismissed me and again told me this was not the case and that I would not be seeing a Rheumatologist in hospital. Again he very rudely and abruptly told me to stop wasting his time. He asked me if I would like 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 too, that none of these medical services are government-funded and are all privately paid for. A patient paying a lot of money for a service and this is the way they are treated! This doctor still billed 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 the hospital ward. The following day I was discharged with a script for a change of 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 the Rheumatologist 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 him. 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 hopeful that I was going to get control of this condition and that 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. The Fibromyalgia symptoms are often too much to bear. They started really interfering with my ability to perform my duties at work. The brain/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 that 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 was doing the day before. I was becoming like a blithering idiot. I’m not sure if the medication also made it worse, but I just knew that I couldn’t carry on. I battled to concentrate and my mental functioning was definitely 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 my Rheumatologist, it was advised that I 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 the Rheumatologist 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’m still ever hopeful that one day a cure will be found for Fibromyalgia, and that one day I will be able to return to the life I once had. I know that Fibromyalgia is progressive even though some doctors might disagree. I know that I have gotten worse over the years. My brain function has gotten worse over the years. 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.