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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 Fibromyalgia. There are a lot more officially diagnosed illnesses that I will list here also.
This is an excerpt from my GP's letter to my new doctor for when I moved recently.
Diagnosis
Multiple Sclerosis, Fibromyalgia, Ankylosing Spondylitis, Chronic Severe Osteoarthritis, Clinical Depression, RSD (Reflex Sympathetic Dystrophy) aka CRPS (Chronic Regional Pain Syndrome), Scoliosis, Psoriatic Arthritis, Chronic Severe Degenerative disease, Obstructive Sleep Apnoea, Childhood Epilepsy, Sacroiliitis, Psoriasis, Excema, Plantar Fascitis, Raynaud's Phenomenon, Recurring Idiopathic Boils, 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 didn't know 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 however after seeing another Neurologist in May last year once again I have been told it IS Multipal Sclerosis.
Pain, joint and muscle pain, skeletal 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
Fish Oil 10 grams per day
OxyContin 40mg twice daily. Opiate pain relief. Morphine in slow release tablet form.
Pariet. 
Methotrexate 10mg per week for 4 weeks increasing to 15mg per week.
Folic Acid 10mg for the first 3 days after taking Methotrexate.
Lipitor
Coversyl
Nasonex Nasal Spray
 
Although only getting my Fibromyalgia diagnosis in 1993 after 2 years of tests following Glandular Fever I believe that I have probably had Fibromyalgia 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 Rheumatologist 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. 


Many thanks, Angela, living in hope of a longer life.
Blog updates via  http://invisibleillnesses.blogspot.com.au/search?updated-min=2007-01-01T00:00:00%2B11:00&updated-max=2008-01-01T00:00:00%2B11:00&max-results=8

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 actually amazed me that no doctor or pharmacist (apart from the one who did my full pharmaceutical 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 guess 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 December 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.

 


 

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