Rozanne Ravensbergen - History of Illness
From June 2011 - Completed June 2014
Severe symptoms came on suddenly in June 2011 after giving birth to my son, although we do suspect that the core weakness I struggled with after a soccer injury, car accident and birth of Alanah in 2009 may be related to what I am experiencing now. 27 yrs old at the time, I was induced for pelvic girdle pain. My legs gave out after induction and I was admitted rather than going home to await labour. After birth I collapsed while showering and was unable to stand or walk after that point. I was sent home in a wheelchair and told to learn how to cope with my new normal while waiting for testing and referrals. I progressed from a stable walker to a rolling walker and then a cane so doctors were telling me to be thankful for the progress I was making. I never improved beyond the need for a walker/cane. I continued to push myself beyond my physical limits. I could not afford to stay in bed – I had a 3 ½ yr old, a 1 ½ yr old and a newborn to take care of.
Pain and muscle cramping came after I continued to force myself to learn how to walk again. Walking was an un-natural feeling – it felt like my brain had forgotten how to walk so it was a very deliberate action. Fatigue was terrible – endurance very poor with standing and walking. Sitting also became increasingly uncomfortable – especially for long periods of time. I could somewhat manage the upstairs in my home – wobbling from couch to kitchen, kitchen to bedroom and resting in between. Any longer distance required a wheelchair.
I suffered from severe insomnia for several months, causing dizziness and severe fatigue. After trialing several sleeping drugs without success, I was sent for a sleep study and trialed an apnea machine, although my study showed increased arousals during sleep that were unrelated to breathing issues – intriguing the sleep doctor. The machine only caused further difficulty with falling and staying asleep. After my pain was somewhat under control with the drug Cymbalta I was able to do Cognitive Behavioural Therapy for insomnia which helped me break the severe insomnia cycle. I still struggle to fall and stay asleep and do not receive restful sleep at night.
I was tested for everything my doc and I could come up with and sent to well renowned muscle specialists, neurologists, rheumatologists. All tests came back normal. We followed trail after trail, including possibility of Myasthenia Gravis. Each new referral took months and hope for a diagnosis constantly dashed. Specialists were impressed with the credentials of Dr Tarnapolski in particular and I was told that if he couldn’t find anything there was not much else they could do. Dr T concluded that hormones from pregnancy were the culprit, not having any more children the solution. I had EMG’s, MRI’s, muscle biopsy, countless bloodwork, neurological testing. No-one seemed to pay attention to the fact that I couldn’t lift my legs when lying down, to my increasing joint hypermobility, to my functional disability. My body looks impressive still as far as muscle structure goes and I have good muscle strength when lying down – it was suggested that it may be my brain tricking my body into thinking there was a problem. That was a scary thought…
Rheumatologists barely gave me a second glance because nothing showed in bloodwork. One diagnosed me with fibromyalgia and told me it would all be a bad dream within a month considering my current medication (Cymbalta), both sent back a report stating that I had normal range of movement in my joints without actually giving me a physical examination! Each of the specialists reported that I had a ‘fair tandem gait’ – how could that be possible when I could barely walk?
I was passed between physiotherapists as I made no improvement and exercising induced higher levels of fatigue rather than improvement of ability. All physiotherapists have been puzzled by my lack of functional ability. I have never been able to stand on one leg since the onset of symptoms. I was told by my physiotherapist that I should be using a walker instead of a cane for fear of falling and to improve my balance. I find the walker cumbersome, I am somewhat embarrassed of my disability because apparently it has no cause and I feel like I am aware enough mentally to drop gracefully if I feel like I am going to fall. Because of weakness in my shoulders I am not able to rely on a cane anymore either. A Guelf physiotherapist (Scott Witmore) noticed the unusual amount of laxity in my joints, suggestive of a connective tissue disorder.
A referral to the Geneticist (Dr H Faghfourey) in Toronto suggested that I might have a connective tissue disorder of some kind – I do not quite fit Hypermobility Ehlers Danlos Syndrome but by her I was given a 6/9 on the beighton scale for hypermobility – definitely not normal Range Of Movement! The geneticist was puzzled by my lack of family history, as well as lack of personal history of struggles with hypermobility, pain and weakness. I was a strong and fit child and adult formerly, somewhat hypermobile but always at an extremely high level of fitness. I have always loved extreme and physically demanding sporting activities – I have never suffered from dislocations common of EDS patients or had an unusual amount of childhood injuries.
I have had saturating night sweats for almost a year now as well, almost every night, requiring a change of clothing during the night. Apparently this could also be a side effect of Cymbalta but I am certain they began after I had been on Cymbalta for a while already.
Nausea comes and goes – seems to be worse during my weakest times. Often I crawl on my hands and knees around the house and crouch down to do tasks wherever possible. I am no longer able to walk even a short distance to the local park with my children. I avoid the stairs in our home and will crawl back up them if I need to go downstairs. I no longer have the strength or energy to do my own groceries and have to be pushed in a wheelchair if I want to go out for any length of time that will require me to stand or walk for more than a few minutes at a time. A kitchen stool is necessary at all times when working in the kitchen as I cannot stand long enough for even the smallest tasks. Reaching for things in the cupboards or hanging laundry is very difficult as my shoulders do not have enough endurance or strength and fatigued quickly. I have to be careful when lifting pans as my wrists lose strength and I am unable to maintain hold of the pan. I can no longer play my guitar as I do not have enough strength in my MCP joint to push the strings down on the neck of the guitar…. Bracing of the thumb joint helps me be able to do functional tasks and lessens pain severity.
Lately I am struggling to breathe. My ribs and shoulders have been going out of place for a few months now, causing pain, discomfort and further weakness. Chiropractic care and taping has helped a little bit. My husband/friends are able to move my shoulders easily back into place for me – sometimes several times a day. Last month I discovered to my horror (in a near drowning experience) that I am unable to swim anymore again! Where formerly it was because my gleuts would not have the strength to kick, I am now unable to be in the water because the pressure of the water on my ribs makes breathing very difficult. Every week it becomes increasingly difficult to breathe. I am coughing up phlegm and am exhausted to the point that I am falling asleep several times during the day. I cannot talk for very long, my voice is weak and I get tired very quickly. I am concerned because my hips never improved once affected and my thumbs never improved once they were affected. I need my ribs to breathe – I am going downhill fast!
I have tried diet changes (high alkaline, supplementations, whole and raw foods). While they seem to help improve my energy levels a little bit, the level of improvement does not make the effort needed to prepare special meals for myself a viable option. Diet may help a little but it is not the source of my struggles.
I have since (7 months ago) been referred to a pain specialist – I am awaiting an appointment date. It has been 3 years and I have noticed this disease/disorder improve to a point, plateau, worsen, improve, plateau and worsen again. Overall I am on a downhill spiral…..