Lynne's Story

I first became ill in 2001 when I had a fall in December and injured my lower back. I was depressed and went through a lot seeing an osteopath and a physiotherapist over the next 18 months. In the June of 2002 my ankle swelled up very badly, it looked like a sprain but my physiotherapist didn't think it looked right and told me to speak to my GP. My family has a history of arthritis so he decided to conduct a blood test. The result was border-line with regards to possible arthritis and so I was sent to see a consultant. As a result of this visit I was diagnosed with Rheumatoid Arthritis and treated with Hydroxychloroquine, Diclofenac and pain-killers, I was also given a course of hydrotherapy. I even had cortisone injections in my toes – which was incredibly painful. Nothing worked, my pain just got worse, and I ended up addicted to painkillers and got very depressed.

My consultant changed in 2007 and on my second appointment with her she told me I had Fibromyalgia and sent me away with leaflets. I knew nothing about 'Fibro' but after internet searches, an occupational health nurse told me about a course they were running. This was about Fibromyalgia and how to cope with it, how to pace yourself and about the different services you could access. It really helped knowing I wasn't the only person with it.

About 3 years ago I started with TMJ (temporomandibular joint) pain and was sent to the dental hospital where I was x-rayed and given a gum shield, they also recommended seeing a physio. The physiotherapist was great, she treated my neck and I now see her at least twice a month where she treats me with ultrasound and TENs.

Over the years I have had recurring really bad toothache which has meant I've had 3 teeth out. When they have been removed there has never been anything wrong with them, but the pain was so bad even with all my painkillers I couldn't eat.

Recently I've had a lot of pins and needles in my hands. This makes my hands go numb and my sense of touch is greatly reduced, as it only tends to occur during the day the doctor doesn't think it is carpel tunnel syndrome.

Other than the pins and needles my general pain is mainly in my hands, back and feet, and it can range from a stabbing pain to an ache. I occasionally also get restless legs with similar symptoms in my arms which can make me hit someone if they are next to me without meaning to.

Day to day I can no longer walk as far as I used to. I can't do my cross-stitching and the housework doesn't get done as often as it should (I live on my own). I am still able to work full time, but without a brilliant Union representative and adjustments made in the laboratory where I work I would have had to leave years ago as I can't stand up for very long. As it is I don't do much during the week and sleep all Sunday afternoon to allow me to work.

I am open with my work colleagues about when I am bad and what I can and can't do and they are very supportive which I am very thankful for. My sickness record is higher than most but work are good most of the time.

The hardest thing I find is when I get a new manager and I have to tell them all about my Fibromyalgia, what it is etc. as each time this happens the information about my condition and details of the adjustments I require are never passed on. It is hard to admit you can't do certain things and especially when it is early on with a new person it doesn't give a very good impression.

In terms of medication I take, I survive on Dihydrocodiene 60mg slow release painkillers, one in the morning and one at night. These were a godsend as I used to wake every 4 hours at night when the ordinary painkillers wore off. I also take anti-depressants, Codydramol when needed, and 50mg of Amitriptyline at night. I've tried Pregabalin (a neuropathic pain agent) but it does nothing for me.

I have also over the years found out what true friendship is and who my friends really are! When you are depressed and cannot go out due to pain only your true friends keep in touch and support you. I had a group of what I called friends - we holidayed together and I would often picked them up and drive them to the pub so they could have a drink - once I became ill though, despite me e-mailing and saying please keep in touch or would it be possible for them to come and pick me up and go for a drink nearby, I heard nothing.

I find pacing myself hard sometimes and one of the few things I do for myself is running a Brownie pack. I can't run pack holidays like I used to but fortunately can still go on organised holidays and camps, the other guides are great and if I need to rest I can take one. I do however then have to take 2 extra day's holiday from work in order to recover!

Overall, I am still active and able to live a fulfilled life which I am thankful for.

I joined Cloudy as I don't believe enough research is being done on Fibromyalgia. I know stress definitely affects my pain levels, and also not just wet weather but high humidity also makes it bad. I live on the Wirral which has its own micro-climate, the weather is milder and I'm sure that helps.