Seeking Diagnosis.
I’ve been in chronic pain for a number of years and bounced between a number of GPs, emergency rooms and specialists.
GP consultations haven’t provided an over-arching diagnosis. The 10–20 minute time frame is always too short to figure out what’s going on.
Presentation at ER results in being bounced through fast track because there’s an expectation my GP will work on organising scans and a diagnosis. The public waiting list for scans, tests and referrals runs into months.
So I’m just going to tell you all what’s going on.
I don’t want to do this.
It makes me feel sick to be posting about my own medical issues.
But I need to, because I’m not getting the care I need.
I’m hoping an expert — an endocrinologist, a heart specialist, a rheumatologist or a geneticist — will see this post and recognise the symptoms. That an expert will see this post as a challenge and help me figure out what’s going on.
Please note: I’m not interested in exploring alternative therapies such as reiki, light therapy, naturopathy and cannabis oil. If you’re not a medical expert, please consider withholding your unqualified opinion.
I’m a single parent in my late 30’s, formally diagnosed with Central Sensitisation Syndrome (CSS) and menorrhagia. I do not plan to ever have another child. I don’t drink or use drugs. I work part-time as a media and communications consultant. I am of Polish/Russian (paternal Ashkenazi Jewish descendent) and Irish/English/Scottish matrilineal descent.
I have presented at ER a number of times over the last two years due to left-side abdomen pain and hand pain.
The pain is worst in my left hand, second finger from the left, but both hands are currently swollen and cuticles are detached.
The ovarian cyst is on the same side as the abdomen pain.
I experience disabling symptoms from hand pain, extreme migraines, inflammatory response, vomiting, abdomen swelling, joint pain, skin rashes, right-side abdo/hip pain that is worse in my luteal phase. There is pain that extends down into my right upper leg that worsens during episodes. I have ectopic heartbeats and an irregular pulse. My ankles are swollen and I have an unidentified rash across my abdomen, arms and legs. I struggle with temperature regulation. I was born with a hole in my heart that closed over by the age of 3. I always have a headache.
When my CSS is bad, I am highly noise and light sensitive.
I have hyper-mobility. Between the ages of 7–14 I participated in competitive gymnastics.
During the luteal phase, my sleeping pattern is highly disturbed: I find it difficult to fall asleep, wake multiple times and never manage to sleep more than five hours.
I get migraines that last 48 hours and make me chuck up in the last days of my cycle. I treat the migraines with imigran.
The rash on my abdo, arms and legs is worse during the last ten days of my cycle and my fingers swell to the point the cuticles detach from the nail beds. It is extremely painful. It feels like something is chewing my fingers from the insides. I experience joint pain.
I am constantly exhausted. The first two weeks of my cycle is spent recovering from the last two weeks of my cycle: healing cuticles and skin rashes, recovering from severe migraines, relaxing from stress of pain and resetting my sleep cycle.
I currently have a chest infection, which began approximately just over 1 month ago after catching the flu at the same time as my son. I’ve completed a course of amoxicillin for the chest infection, but it has not fully cleared. At the same time as the chest infection, I developed a golden staph skin infection, which was treated with doxycycline. Three months ago I had an infection in my left armpit lymph node, which was treated with antibiotics. Two months ago I had a UTI, which again was treated with antibiotics.
I am on a public wait list for an intravaginal ultrasound (July), a gyno consult (September) and a private consult with a rheumatologist (August.) I attended the Royal Women’s Hospital last month and it was suggested “maybe fibroids or ovarian cyst is causing pain.” Further investigation is planned, although a hypothesis of fibroids or ovarian cyst doesn’t explain all the symptoms that occur during the luteal phase.
Tests have not indicated an elevated ESR. My CRP sits at 9–10 generally, however doctors that I’ve seen have not been particularly concerned when I’ve raised this with them.
I have a distended abdomen — most of my weight is carried at the front.
I generally have low blood pressure — in fact, after lying down it’s often so low that nurses make me drink a glass of water to raise it before I sit up or walk. I often feel faint on waking.
I started taking promensil and a daily vitamin tablet after my hair started falling out in clumps in early 2017. My hair is no longer falling out at the same rate, but it is still brittle and thinner than it was previously.
I previously had Implanon inserted, but found it caused ongoing break-through bleeding and eventually had it removed. I also tried Diane ED, but found it created mood instability and decided to discontinue use.
I arranged a public hospital outpatient ob/gyn clinic appoint in early 2018. My pap smear was clear for abnormalities.
I walk every day (don’t own a car, so I walk 3km minimum every day) and carry all the weekly groceries by hand. I drink 1–2 coffees per day. I drink approximately 1.2 litre of water most days. We eat salad and veg every day. My son is a normal weight, despite having a much higher carbohydrate intake than me. I practice meditation and gentle yoga at home most days.
After a cesarean in 2008, I contracted golden staph. I arranged care at home for debriding and wound dressing changes, as I found post-natal wound care at the public hospital I attended to be inadequate.
I previously had a kidney stone removed in 2011. I recently had scans and no kidney stone was detected.
I’ve had my thyroid tested and no issue was discovered.
I have previously lost large amounts of weight — 60kgs last time in 2016–17. I put on weight very fast and always carry it around my abdomen. The hand and right-side abdomen pain began when I was at my lowest weight in a decade (73kg) in September 2016.
I’ve had an abdo MRI: I don’t have gall bladder infection or gallstones.
I am negative for lupus, diabetes and coeliac.
I have a small breast lump calcification (right breast), discovered by mammogram.
Prior to exiting ER (usually from short stay units) I have been offered pain killers (codeine, endone, tramadol), which I do not wish to take as these pain killers disable my ability to function.
I attended a private pain clinic. The pain specialist diagnosed CSS, and suggested I treat the pain and improve my immune response with better diet, more rest and adding supplements.
The pain expert recommended continuation of tramadol, which worked well at first to mask pain, but I discontinued because it became less effective over time and also interrupted my ability to function. The pain expert also recommended gabapentin, which I found made my world-view grey and flat — and as a result I discontinued it; and norflex, which I take maybe once a month.
CSS may be the result of improperly addressed pain, but it does not explain all my ongoing symptoms.
Most doctors generally raise the issue of my weight when I seek help for the symptoms I have described above.
I’ve found a number of medical staff to be dismissive, patronising and sometimes outright rude. I assume this is because I am female, fat and nearly forty.
I want a diagnosis and appropriate treatment.
Family medical history: My mother and paternal grandmother both had rheumatoid arthritis. My father died of pancreatic cancer after a heart attack and a stroke.
I have not been tested for: Rheumatoid arthritis, Microscopic Polyangiitis, Hereditary Angiodema Type I, II & III, EDS, Postural Orthostatic Tachycardia, Mastocytosis, Familiar Mediterranean Fever, MS and a full panel of Ashkenazi-related genetic diseases.
