MY STORY OF LIFE WITH CFS/ME/CFIDS AND ALSO FYBROMYALGIA
Id like to share a bit about myself with you. My name is Angela
Larsen and I have CFS/aka ME/ aka CFIDS and Fibromyalgia. There are a lot more officially diagnosed illnesses that I will
list here also.
This is an excerpt from my GPs letter to my new doctor for when
I moved recently.
Diagnosis
Multiple Sclerosis[?], CFIDS, FMS, Ankylosing Spondylitis, Chronic
Severe Osteoarthritis, Clinical Depression, RSD (Reflex Sympathetic Dystrophy) aka CRPS (Chronic Regional Pain Syndrome),
Scoliosis, Secondary Depression, Chronic Severe Degenerative disease, Obstructive Sleep Apnoea, Childhood Epilepsy, Sacroiliitis,
Psoriasis, Excema, Recurring Idiopathic Boils, Carpal Tunnel Right hand, hernia, IBS (Irritable Bowel Syndrome), Restless
Leg Syndrome, Sinus infections, Hay fever, Asthma, Heart murmur (Mitral systolic murmur since early childhood) Type II Diabetes
and Hypertension.
*NB: I might add that until I saw the new doctor in this new town
I didnt if I was officially diagnosed with MS. After visiting a Neurologist in January 2005 the diagnosis was not
MS but an undiagnosed Neurological condition.
Symptoms
Pain, joint and muscle pain, skeletor pain, shakes, disturbed vision,
headaches, severe muscle spasms, fatigue, insomnia, muscle wasting, muscle weakness, ringing in ears, itchy skin and scalp,
infected boils everywhere, uncoordinated, speech problems, numbness in face hands and feet, discoloured feet and lower legs,
BP up high and down low, Constant low grade fever, sweats both hot and cold, Severe Heat sensitivity, Noise sensitive, Severe
Light Sensitivity. Unable to comprehend simple instructions. Balance problems leading to bouncing off walls and falling over,
weight gain, fluid retention, CRS syndrome, Bladder and bowel dysfunction, swollen hands and sausage fingers, swollen ankles
and knees, Losing walking skills and arm use. Torn ligament in Right Ankle, Heart palpitations. Dry Eyes and multiple surgeries.
Medications
Oruvail 200mg daily.
OxyContin 40mg twice daily. Opiate pain relief. Morphine in slow
release tablet form.
Valium, 2 1/2 mg AM, 5mg PM This is to control the violent muscle
spasms I have which I can only compare to my childhood epileptic seizures.
Pariet twice a day. This is to keep the stomach ulcers under
control after years of pain medication and anti-inflammatory drugs.
Although only getting my CFS/FM diagnosis in 1993 after 2 years
of tests following Glandular Fever I believe that I have probably had CFS/FM since problems in my early childhood which I
will now list.
Childhood illnesses.
Up until age 5 I had penicillin many times for Tonsillitis.
February 1961 I was admitted to York County Hospital for 2 months
with Acute Nephritis caused by Streptococci from Tonsillitis and Measles on top. High temperatures caused my Mitral Systolic
Murmur. It is possible that I also had Rheumatic fever at the same time as the Acute Nephritis.
My tonsils were taken out before my 6th birthday.
Vaginal Discharge leading to soreness of vaginal lips. I was admitted
to Fulford Hospital for gynecological inspection 1964. Not told of any results and no medicinal follow up.
Immigrated to Australia 1964 November 2nd.
I had my first Grande Mal seizure 26th January 1965 and treatment
started after second one in March 1965 with Ospelot and Dilantin prescribed after 3rd seizure in October 1966. I remained
on these medications until 16 years of age.
There were no more seizures after 3rd one.
Aged 10 bilateral conjunctivitis treated at Royal Brisbane Childrens
Hospital. I was admitted for 1 week and it cleared up but came back as soon as released and started normal activities.
Then I went privately to a specialist and he thought both eyelids
would need to be scraped as they were very ulcerated but 3 weeks on Predsil Drops cleared them and no more problems since
then.
Put on weight and was put on Ponderax aged 17. Ponderax caused terrible
stomach problems like an ulcer.
Chronic stomach pain around 19 years old, nothing was found and
it stayed until age 23. Polyps removed via anus. Mum read about epilepsy of the bowel and thought it could be what was causing
the problems of pain spasms. I was told I had a spastic bowel. Spastic Bowel is now known as IBS (Irritable Bowel Syndrome)
and is one of the joyful symptoms of CFS/ME.
I took Clomid to become pregnant as I had Polycystic ovaries and
endometriosis and I was in my best health whilst pregnant with the twins although I threatened miscarriage for the first 4
months.
I contracted Glandular Fever in Febuary 1991 and from there on my
health continued to deteriorate with new diagnosis's added constantly until I got to the list above.
The neurological condition is taking it's toll on me now with
my walking reduced to almost nil, weakness in my arms and all the other common MS like symptoms. My vision
is now even worse than before as is my ability to concentrate and communicate. I don't have remissions just the continual
decline in health. Going through menopause isn't helping my condition at all either. All my illnesses and diseases
are now so intermingled that it's too difficult to determine which is which.
I'm now basically bed bound and spend a lot of time asleep in my
hospital style bed with air pressure mattress or in my electrically operated recliner to assist me in getting in and out of
the chair.
I'm fortunate to live in Merimbula now and my view from my chair
is of natural bush land and native wildlife. It sure makes being house bound much more pleasant and life more liveable
to have such beautiful surrounds.
Latest update 8th April 2007
I will be getting a brand new electric wheelchair within
the next 4 weeks which will make my life much easier and I am truly grateful to the people who funded my chair, PADP NSW.
Also,
after visiting my specialist Rheumotologist in Sydney on the 30th March, it was confirmed that I am dying from complications
of my illnesses and the morbid obesity that medications and lack of ability to mobilize as much as I should. My only hope
of a longer life is Gastric Lap Band surgery.
Gastric Lap Band Surgery is not yet available to the public system of hospitals
and is very expensive at between $13000 and $16000.
The 2 surgeons I've been referred to are pushing the Australian government
to make this life saving surgery available to the general public and not just the rich or those able to fund their own surgery.
I'm
willing to try to help them in any way I can to be able to get my own much needed surgery. If I have to pay, then I will need
to register myself as a charity and raise funds somehow.
If anybody has any ideas on how I can do this please contact me
via the Contact Me page of this site.
Many thanks, Angela, living in hope of a longer life.
Update from blog September 20, 2007
Since the age of 18 I've been dosed up on antidepressants and for the first time since I'm antidepressant free.
It's early stages but I have to say that I've never felt better.
I feel so alive, so much energetic and so much less bloated.
I didn't realise that Aropax had so many side effects nor did I realize that I had any side effects. Having just read all the side effects it's acutally amazed me that no doctor or pharmasist (apart from
the one who did my full pharmacutical study recently) had noticed that almost all of my major symptoms were actually side
effects of Aropax.
I'm so glad I don't take this poison any more and there is no way known that I will take that kind of phsyco-altering
drug ever again.
I knew that I was lost deep inside myself and trying to emerge but with the mega dose I was taking that was
never going to happen.
Just reading things like, oedema, headache, neck pain, cysts, cellulitis, lymphocytis, myalgia, otitis media and so much more that I've been complaining of are common side effects of this one
medication makes me really angry that I had never been warned or told and have only discovered myself today after seeing my
GP skim through the contra-indications at the surgery then researching them myself.m
My GP is ecstatic that I am now free from so many of these symptoms and me again.
But not nearly as ecstatic as I am!
Update from blog September 25, 2007
As mentioned in a previous blog, I have been sedated/subdued and almost comatose for most of my life on antidepressants.
The last 8-10 years I have been taking Aropax and I thought without the terrible side effects of the SSRI style
antidepressants.
How wrong I was. I only found out by accident (needing to change
so that I could begin another medication) how wrong I was.
Since stopping Aropax and being free of it now for almost the full required 3 weeks, and not replacing it because
of terrible side effects from the new one, I have lost around 6kg of retained fluid.
I'm no longer bloated and swollen and quess what...I don't even need an antidepressant.
Also since stopping the Aropax my body is starting to heal and is now dictating to me, via medication reactions,
what other medications I can't take.
I've had to stop taking Neurontin because it starting giving me side effects I'd never had before. The over medicated type feeling, extreme heavy/cloudy head, dizziness, nausea and even the start of the
seizures that started when I tried to take the Reductil.
I had to put through an urgent call to my doctor yesterday to tell her that I couldn't take the Neurontin and why and she was as amazed as I am that my body is telling me, no, dictating, to
me, what I can take and what I can't.
I don't seem to need the high doses of Oxycontin that I'm currently taking either as they are also giving me
the over medicated feeling but it has to be reduced slowly and as the Neurontin was causing me most disturbing side effects. My doctor has given me the OK to start reducing the Oxycontin once I've had a couple
of days Neurontin free just asking that I keep her updated and making sure I reduce it slowly and not too far back that I'm
back in uncontrolled pain.
My body seems to be healing itself and I hate to brag but after being so far down that doctors had told me I
was dying from complications of my illnesses to how I am now is just a miracle unfolding each day and so exciting for me and
the family to see and hear the difference not only in my health but my state of mind.
I'm no longer dying....I'm living for the first time in so many many years.
Update 5th Decenber 2008
Over a year since I've written a blog anywhere so just a quick update to bring this totally up to date.
I'm now on so much less medication than ever before. I've lost
over 30kg just from coming off the medication that was doing so much damage and I'm no longer taking any antidepressant medications
at all.
I no longer have to take medication for Diabetes, have reduced the amount of Oxycontin and want to reduce it
further. So many changes in my life that it's hard to imagine what I was like
just over a year ago as being real.
I've been enjoying living so much that I have neglected to blog or keep my website up to date but I hope that
that will change now.
