ABOUT ME

MY STORY OF LIFE WITH CFS/ME/CFIDS AND ALSO FYBROMYALGIA

I'd 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, RSD (Reflex Sympathetic Dystrophy) aka CRPS (Chronic Regional Pain Syndrome), Scoliosis,  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 hands and 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, CRAFT syndrome, Bladder and bowel dysfunction, swollen hands and sausage fingers, swollen ankles and knees, Torn ligament in Right Ankle, Heart palpitations. Dry Eyes and multiple surgeries. Medications Sulfasalzine 500mg twice daily, OxyContin 40mg twice daily. Opiate pain relief. Morphine in slow release tablet form. Valium, 2 1/2 mg twice daily. This is to control the violent muscle spasms I have which I can only compare to my childhood epileptic seizures. Pariet.. 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.

Update 21 August 2010

It's now been 3 years since I've needed antidepressant medication and I'm still feeling wonderful.  I have managed to give up smoking.

I'm in the process of organising to see a Rheumatologist again as I can no longer take anti-inglammatory medications due to stomach problems and my AS is active causing left side numbness when I lay down, passing out when I lay down (this has been proved to be because my neck has fused in most places and where it's not fused it is causing narrowing of the nerve canals and pinching nerves).  Now I am having problems with the right side too.  More pain but once the fusing completes I am lead to believe the pain with ease.  I'll be crippled but not as much pain from the AS.

My severe degenerative disease is also a major concern at the moment and my hands are becoming deformed.  As I've only just started taking the Sulfasalazine I don't know yet if it's going to work.  I'm getting very little sleep from the pain in my joints throughout my body.

I was walking often until I had to stop taking my anti-inflammatory medication and now I find it difficult to even walk to the bathroom without pain.  I'm hoping that the rheumatologist I'm going to see is as good as his reputation and that he can help me become more mobile again.

I cope with help from my very supportive family, a very good GP doctor and free audio sessions that help with chronic pain, relaxation and insomnia produced by Jason Newland Without Jason I don't know how I'd keep going.Free Audio Sessions Chronic Pain Relief, Insomnia, Relaxation and Give Up Smoking.

Update 21 August 2010

It's now been 3 years since I've needed antidepressant medication and I'm still feeling wonderful.  I have managed to give up smoking.

I'm in the process of organising to see a Rheumatologist again as I can no longer take anti-inglammatory medications due to stomach problems and my AS is active causing left side numbness when I lay down, passing out when I lay down (this has been proved to be because my neck has fused in most places and where it's not fused it is causing narrowing of the nerve canals and pinching nerves).  Now I am having problems with the right side too.  More pain but once the fusing completes I am lead to believe the pain with ease.  I'll be crippled but not as much pain from the AS

My severe degenerative disease is also a major concern at the moment and my hands are becoming deformed.  As I've only just started taking the Sulfasalazine I don't know yet if it's going to work.  I'm getting very little sleep from the pain in my joints throughout my body

I was walking often until I had to stop taking my anti-inflammatory medication and now I find it difficult to even walk to the bathroom without pain.  I'm hoping that the rheumatologist I'm going to see is as good as his reputation and that he can help me become more mobile again

I cope with help from my very supportive family, a very good GP doctor and free audio sessions that help with chronic pain, relaxation and insomnia produced by Jason Newland Without Jason I don't know how I'd keep going

Update 17 October 2010

I'm now seeing a Rheumatologist in Canberra and have tried Lyrica without success with similar side effects to the Neurontin.  I am taking Arcoxia which is helping with a lot of the arthritic/fibromyalgia symptoms but not as well as it did when I was also taking high doses of Prednisone to try to put the AS into remission.  I felt so great while on the Prednisone and thought the Arcoxia was the wonder drug I'd been waiting for only to find that once weaned off the prednisone I'm back where I was.  Actually I would go so far as to say in a worse place than I was because now I am showing signs of depression again for the first time in 3 years.  Mostly from the amount of pain I'm in again which is worse than ever thanks to the new diagnosis's, active AS and MS and both of those causing my Fibromyalgia and ME to flare.  It may be reactive depression which I think is more than likely but as there is a lot going on in my life at the moment it could be both primary and secondary depression again.  If I can avoid it I won't be going down the antidepressant track again but should I need to take them I will follow my doctors orders providing the doctor listens to my concerns which normally does happen.  I do have one antidepressant that I can take which is very low dose and from previous experience we know it does help so I'll keep an open mind about it for now and hope that I don't slip too far backwards.

The Rheumatologist I'm seeing isn't the one I'd prefer to be seeing but at least it's one I can get into as there is a massive waiting list for Rheumatologists in NSW and Canberra.  I'm going to get a second opinion with the chief of Rheumatology at Canberra hospital as soon as I can get in to see him.  He is my current Rheumatologist's boss but he has an amazing reputation so I'm looking forward to seeing him as my current doctor is already showing signs of wanting to give up on me as I'm so difficult to treat because of my limitations with medications I can tolerate.  Not the perfect situation when you need good treatment but it will have to suffice for now.