You are in: Home > Patients Stories > Val's Story

Val's Story

In 2000 I started to have menstrual problems and Gp thought I had a fibroid, I was referred to a gynaecologist and had a hysterectomy done in 2001.

I was forced against my wishes to have Heparin injection (having had three post operative bleeds and all dental work has to be sutured I didn't think I would need it). I was right-I had two enormous Haematomas (blood clots), which delayed my recovery and caused me a lot of extra pain.

I thought that would be the end of my problems, but it was to be the beginning. I returned to full time as a District Nurse-I was totally worn out, by 2.30pm I was asleep on my feet and could hardly keep my eyes open until I got home. I was hurting in my lower legs and arms and generally aching and feeling unwell. All very non-specific ailments.

My memory seemed to be deteriorating, my skin had become very dry. I thought perhaps my Thyroid was becoming under active so I paid a visit to my GP to see what he thought. He took some blood and I returned to find I was right, my thyroid was under active and my cholesterol was raised. I was given 3 months to lower cholesterol, which dropped before rising sharply. I commenced Thyroxine and simvastatin.

About this time I became concerned, my grandmother had died at 48 same age as I was from raised cholesterol causing heart problems and I like her, was very over weight. I continued to struggle and felt that perhaps I needed more Thyroxine, so returned to Gp, this time seeing a different partner, who looked at me and asked, "How do you feel". I told him how tired, worn out painful my body was and how my husband had to pull me out the chair and push me up the stairs at night.

He said I needed some blood tests taking, so they were done and I was phoned to go to surgery to see him. My ESR (inflammatory blood marker) was raised and my Gp said I needed to see a Rheumatologist Urgently. I paid into a scheme at work so I went off to see him privately. I remember feeling very panicky as I had just thought it was a combination of lack of oestrogen, arthritis and middle age. I was in shock.

My husband came with me; I am very lucky, he is my strength and has been with me all the way. The Rheumatologist did lots more blood tests. He thought I had Polymyalgia Rheumatica, a disease of 70 year olds and rare under 50-I was 48 !!!!

I started my quest to sort myself out and so began my search for understanding of the immune system. The Rheumatologist gave me two weeks of Prednisolone (steroids) and within 48 hours I felt brilliant. I stopped them as requested and quickly deteriorated, I returned to Gp who put me back on them.

At this time, my platelets (the component of blood that helps with clotting) dropped really low and I was sent of to see a Haematologist, it was suspected I could have Leukaemia-into panic mode again. !!! I was lucky to have a neighbour and friend who was a Macmillan nurse and she really supported me through this time. Lots more blood test, but as I stayed on Prednisolone, my Platelets level started to climb so I had a reprieve from a bone marrow test.

Then my blood Pressure rose to a dangerous level. I was commenced on medication; I also developed blood in my wee and was sent of to be investigated by a Urologist (bladder man) before being referred to a Nephrologist (kidney man). More tests, more worry, more research =still no diagnosis! My research made me realise that I had not got Polymyalgia rheumatic and everytime my Internet search continued, my symptoms took me to the lupus page. Although I had been nursing for 33 years I had only met one lupus patient so I knew nothing about it.

I had, had 4 months off sick at this time and decided to reduce my hours to get me back to work. Still without a diagnosis and struggling to keep working, I asked my GP for a second opinion. I saw the second rheumatologist who said the same as the first. Quote "She reads to much and is convinced she has lupus", What was going on !!!!

My research led me to a Message Board and I was directed to St Thomas Hospital Trust Site, where I discovered Dr Graham Hughes. I read that he was UK's leading lupus specialist. Armed with my information I went off to my wonderful GP who has been behind me all the way.He referred me to St Thomas's Hospital without any problem

On the 20th May 2003-Professor Graham Hughes himself, diagnosed me with Systemic Lupus Erythematosus, Antiphospholipid Syndrome & Sjogrens Syndrome.

I could have given him a big kiss-I knew I had it but unfortunately I have a condition called Sero-negative. That means my bloods don't show the correct picture for lupus, something I have no control of, but Dr Hughes diagnoses from Symptoms. He started me on Plaquenil for my lupus and Plavix to help my sticky blood symptoms. I took one Plaquenil and had a vaso vagal attack so I was unable to take it, the plavix helped in the short term.

I returned to London and tried Mepacrine but it made me physically sick so I stuck with the Prednisolone. You would have thought that that would have been mission accomplished but since returning to my hometown two more Rheumatologists have said Professor Hughes is wrong  !!!!!

After a diagnosis and thinking I would now be well looked after, I once again hit an extreme low as London is so far away and a yearly follow up is not enough when you have no specialists locally. My symptoms continued to increase, My health was deteriorating and although I struggled to keep going my sickness was getting worse and worse, in January 2004 on a Sunday evening, I sat with my hubby and cried-I knew I could not carry on any more. I went to see my Gp the next morning to tell him how I felt, his reply was" Val you haven't been fit for work for 2 years"!!!  I never returned to work.

My next battle was to try to secure my superannuation pension as I had paid into it for 33 years. I contacted Dr Graham Hughes as I needed support. I would either get my pension on ill health retirement or I would receive NOTHING until I was 60 (I was 50). Dr Hughes wrote me a wonderful supporting letter and on my 51st birthday I received my pension and the knowledge that financially we would be able to cope.

My memory was deteriorating badly and I would forget simple things, my concentration was really bad and I was having trouble with my balance, my biggest fear was of falling because I am a big girl and have severe osteo arthritis to my knees and right shoulder and could not get up if I fell, I reluctantly started using a stick when I went out for support. I was started on warfarin which has greatly helped with my symptoms.

In less than 4 years I had gone from A District Nurse caring for the sick to a disabled lady who needed a stick to walk with. I didn't visit my ex work mates for nearly a year as I was so self conscious of my disability.

As life continues more problems occur but knowing I have St Thomas Hospital behind I cope. I have to thank my wonderful GP and Professor Hughes for supporting me and most of all my wonderful husband who is always there for me.

May 2010