Norfolk FMS Support
Working with the
Fibromyalgia Association UK
Registered Charity No. 1042582
Where do I start! Some of my story may sound familiar. As a child growing up I seemed to have problems the doctor couldn’t understand, it seemed I had something different to everyone else. I had what they call growing pains in my legs from an early age. At the age of 12yrs I was told there was too much sugar in my blood although I wasn’t diagnosed diabetic. I seem to remember even when I was first married, that I had problems with housework, e.g. Pains in my side and back either hovering, sweeping the floor, or mopping, to name a few.
My main problems seemed to start when I was in my early 30’s. John was quite ill and under medical advice had to downsize his job. I did several jobs to earn more money including driving an ice cream and burger van! I had to find a full time job! At that time we had a recession in the country and jobs were scarce on the ground. I went to work in a factory, after a while I developed tinosinavitus in both hands, this caused a lot of pain and pins and needles. I was put on anti-inflammatory drugs and attended physio, with lots of treatments, including TENS & Ultrasound, I had braces on my hands, all this didn’t seem to help a lot. I slowly seemed to be having unexplained pains in my stomach. During this time I developed a frozen shoulder, this was treated again at physio with TENS and Ultrasound, Ice, Heat, exercise and injections. Arthritis was never mentioned, just that I was very young for a frozen shoulder. During this time my mother moved to a nursing home in Norfolk. At the time we only had one car, which John needed to get to work, buses were in short supply then so I had to walk everywhere, my day consisted of going to see my mother, then the physio and then work. The hospital and my mother’s nursing home were on different sides of the town, so I had a lot of walking to do, as well as running a household and looking after 2 children. The movements in my shoulder gradually improved, but the shoulder has remained quite sore at times. Shortly after this my mother died. With continuing problems my doctor advised me to leave the factory, else I would be crippled for life!
I have always worked so then I started working for a jewellery company on a home plan basis. After a short time I became manager, so worked long hours. This was taking its toll, so then moved on to market research, then a rep for a catalogue company. Shortly after this I developed pains in my feet and a bad backache (something I had never suffered), I went to my doctor and was told the usual, ‘it’s your age and weight’. (We hadn’t long completely renovated a cottage, which at the time I thought had something to do with it.) Thinking this was something which would wear off, we carried on with our plans to buy a bakery business (which is John’s trade). The business was several hundred miles away. This was in October 1989, what a mistake, and one I would live to regret! By January 1990 I could hardly move, and had developed another frozen shoulder, this time even more painful than the first one. I could hardly move especially in the mornings. The whole of my body seemed to be on fire with pain.
Fortunately I had registered with a very good doctor’s practice. My doctor strongly suspected Rheumatoid Arthritis (RA). But blood tests came back negative, but with too many white blood cells! After dismissing any colds and infections my blood was tested again, but still with the same result. I was next sent to a Consultant Hematologist, he seemed sure I was suffering from some sort of Arthritis, and took more blood, still the same result came back. I saw a Rheumatology Consultant privately as there was a long wait on the NHS (as usual), he was convinced I had arthritis and had me in hospital within the week. I stayed in that hospital a month, with lots of tests, x-rays etc., my frozen shoulder was again treated as before, but with no improvement. The final diagnosis was an inflammatory form of arthritis, apparently there are over 200 different types, and some haven’t got names My stomach pains were getting worse so an endoscopy was arranged, this showed I had duadenitis, a condition which was explained is on the verge of an ulcer most
of the time. I was allowed home, and put on a very strong anti-inflammatory drug, which hopefully would halt the progression of the arthritis, along with this I had a medication to line my stomach. I also had to attend the day unit for a manipulation of the shoulder. (Well I certainly wouldn’t want that again! I woke up feeling I would pass out with the pain.) This doesn’t seem to free the shoulder instantly as you would think, I had to go straight to physio and exercise. I had to attend phsio most days for several weeks, as well as doing exercise at home. The movement has returned, but I still suffer with very sore shoulders, and they get stuck if in the same position for long.
The bakery was doing well, we had 2 shops, a wholesale round and catering commitments. We were also fully staffed.
Then came the recession of the 90’s, gradually we had to lay off most of the staff, until there was only John myself and our daughter Lucy. By this time we had all had enough and wanted to come home. As the recession took hold we just couldn’t sell the business, even at a very reduced price. Obviously we were all doing more and more work. I was in tears every mornings due to the pain. I put off doing the paperwork as it hurt me so much sitting for very long, but it was just a vicious circle as then there was more to do. My doctor kept imploring me to stop work, but I couldn’t as the 2 remaining family members just couldn’t cope. One morning Lucy and I had to manage on our own, baking bread, pies etc., (how we did it I don’t know till this day) John just had to sit on a stool and supervise, he had developed pleurisy and could hardly breathe. The next day he was back at work. At that time we filled in a National census, and realised we were all doing 90hrs+ a week!
Eventually we had to split the business to sell, we thought that was the answer until the property purchases let us down on the completion day! The moving van was packed, so we came home. Although we were furious about the sale and how much money we had lost we were glad to be home in Norfolk. We had more stress sorting out another sale of the property.
We lived with Mother in law for a few months, John was working at least 60hrs a week to try and help the finances.
I then developed more pains in my feet, it was unbearable, and the colour of them was dark blue, but the doctor couldn’t say what it was. I had to wait for an appointment to see the rheumatologist. (I would find the answer several years later!)
After a few years I developed more pain in my body which was unexplained, but was taking more and more pain meds. I was diagnosed with FMS in 1996. I started our group in January 1997.
A short time after this I developed a headache one day, this progressively got worse and I was feeling very sick. The doctor was called and couldn’t find anything! he gave me a strong pain med. In the night I awoke with pain and tingling in my hand. We called the doctor, (my doctor this time) she sent me to hospital, by this time my hand had starting turning blue. I had lots of tests, my hand was getting darker, nearly black, eventually after 3 days and an angiogram they found a blood clot.
It was in an artery just above the heart, but was next to another that went to the brain. They were reluctant to operate at the N&N and wanted to send me to Papworth. Before this they wanted to try a heparin drip. I’m glad to say this worked, and gradually after 2 weeks on the drip the hand returned to near normal. Whilst in hospital John couldn’t visit me in the afternoons, I shall be eternally grateful to Sylvie for being there for me, (although in lots of pain herself, she didn’t miss one afternoon). I was put on warfarin on discharge.
Six months later I had another angiogram to make sure the clot had completely gone. The consultant expected the artery to be furred up, but to his dismay it was normal, and the forming of the clot could not be explained. I have been on aspirin daily ever since.
The pain I experienced in my hand, was the same as I experienced in my feet years earlier, luckily it must have been a small clot, which dissolved itself. About two years ago, I had another suspected blood clot, but this after an overnight hospital stay ended up to be Cellulitis, which is an infection of the deep tissue, this was treated with anti-biotics.
From the early 90’s I have experienced stomach pain, but only in the middle 90’s was anti-inflammatory drugs suspected. I have been on strong stomach medication since.
Several times I have had really bad flare ups, and this was discovered to be Helicobacter Pylori, which is an infection in the gut. This is treated with strong antibiotics. I am still on very strong stomach meds, but I never take anti-inflammatory drugs now. My stomach has been really bad lately, I am now waiting for a scan.
I have since also developed Thyroid problems, so am now on Thyroxine. Other problems seemed to follow, my blood glucose was quite high, so was told I was near on diabetic, so would have to adjust my diet for life!Over a period of about 18 months I lost about 4 stones!
I thought nothing else could go wrong, but 2yrs ago, after visiting my optician, he thought there was a little problem! And referred me to the N&N eye department.
I was told I was at very high risk of the worst type of Glaucoma, which can make you blind overnight! The consultant said he needed to carry out laser surgery that day, which was successful. I had suffered with ‘dry eye’ for some time, but the laser seems to have made this worse! My sight seems to be deterrioting every time I go to the optician.
One tip I would like to pass on, try the audio books from the library, the range is quite expansive.
With all my problems, and the pain I get from fibro, I am on quite a high dose of pain medication, this has caused me to virtually stop driving, which came as a bit of blow considering I have been driving for over 40 years (that makes me feel old!) it’s the loss of independence that really hits home. Although I have many problems with my health, I try to stay positive, I go to the Hydro Pool once a week, still chair the group and edit the newsletter, I also sit on several other committee’s. My hobbies include, greenhouse gardening, and making greeting cards, all this when my health allows. Over the years, I have learnt, that you must appreciate the things you can do, not what you can’t! So get out and sit in the garden, enjoy the sunshine while you can,
tomorrow it may be raining.
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