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Disclaimer

Information on this and linked website does not necessarily infer endorsement by the Fibromyalgia Support for Worthing and West Sussex.
Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional.

Registered Charity 1042582

affiliated with FMA UK

webmaster Pete MacKean

January 2014

Fibromites

 

This page is for all our members to share their experiences with fellow sufferers, so that we may help others
understand their own conditions and see any similarities.

Nichola Bond

nichola

My name is Nichola Bond. I am 46yrs old and I suffer with Fibromyalgia Syndrome. I was diagnosed about 10 years ago. The Rheumatologist had no paperwork for me to read, he simply said look on the internet. I started on medication and was put on a pain management course. My life had to change. This was very hard and it took me a few years to adjust. But I am a fighter and I continued to work and look after my family.

I got involved with our original support group which started in Horsham by Jo Fisher in 2003. After a period of time we got our own monthly meeting in Worthing. It became a registered charity in 2005. Our founder Jo has won many awards for her hard dedicated efforts.

Each month we had different speakers and we learnt more about the condition. There is a Help Line at base of each web page, News where to go for help, how to go about getting the right treatment, benefit info, just for someone to listen to you, support and lots more. I hosted the Worthing group each month for a period of time.

The charity got an office manned by volunteers. People were raising money by having fund raisers bungee jumps, parachuting and awareness days, coffee mornings. I organised an all day event in my pub which was very successful.

Then the credit crunch came along. It hit all charities very hard and so drastic measures had to happen. The office closed but is still running at a trustee’s home. Eventually with lack of volunteers our Worthing meetings had to close. This had a profound effect on all sufferers. It can make you feel isolated. I knew I needed a support group as did many of us.

As I have to rest a lot I found myself using my laptop more and more. I started asking friends and sufferers how they were feeling and swapping ideas about. So one day last year 2009 I put together a structure for a new group, spoke with trustees, sufferers and friends and eventually we got a venue through Simon Stuart and his fiancée Kelly Thompson who also a sufferer and before we knew it we had a date, time and place.

It was a different structure to our old group however we still have lots of information, laughter and a discussion time that involves everyone. We hold games events, raffle, competitions, mini holistic therapies each meeting plus all the support for new and old members.

We are still looking for more volunteers and even though we all suffer from the same thing, there are still those around us that give up their time, like me, and we would really appreciate some more people to help. You could be a friend or relative of a sufferer, we are also desperate to raise much needed awareness and funds for our group. Large and small companies can get involved, please support our charity. Any events that you may do for our charity let us know and we can come and represent Fibromyalgia Syndrome Support for Worthing and West Sussex group.

We feel and need to get this news out to reach every sufferer and let them know there is help for them. We are not alone.
Thanks to all, Nichola

Kelly Thompson

kelly

If four years ago someone had mentioned the word 'Fibromyalgia' my response would have been the same as everyone else, I wouldn't have known what it is, not a clue. But then it caught me; we aren't sure exactly when the fibromyalgia started (mildly at least). I had costachondritis about seven years ago, I had a Lipoma removed about five years ago, I was diagnosed with sleep apnea three and a half years ago these are all symptoms but I didn't realise or link them together. The worst symptoms started in June 2007 with a migraine that wouldn't go away, I went into hospital for two weeks and they put me on high dose Amitriptyline and told me that the illness was in my head. I was sent to see a Psychiatric Liaison Doctor who after a few 'sessions' I started developing pain in my legs. The Doctor told me there was nothing wrong with me mentally and she referred me to a Neurologist.

From the day the constant migraine started I was no longer able to work in the call centre I had been working for four years and was not able to go back.

I went to see the Neurologist; but the appointment took a little time by which time the pain had started spreading to my arms, shoulders and legs. I was in a lot of pain but was a zombie because of the huge 175mg dosage of amitriptyline. I saw the Neurologist and he said that with the joint\muscle pain it was not a neurological condition and referred me back to my GP to see a Rhemotologist.

During this time I was also depressed and started to research on the Internet about my symptoms, it was at this time I came across Fibromyalgia for the first time, I told my GP I don't think she took it seriously though. I did go to see the Rhemotologist and he did various tests but he knew right away what was wrong with me, I have fibromyalgia. After some time he decided to change me onto gabapentin and then this year I was changed onto pregablin.

My condition got worse over time, at the beginning I was able to walk, do things myself, now I can't use my hands properly; dress, wash or cook food. I can’t walk without crutches and even then for no longer than two minutes and i have to use a wheelchair outside. I have to have a carer two or three times a day when my fiancé works.

I am on incapacity benefit and high rate Disability Benefits but I had to fight and go to a tribunal in order to get the DLA.

I also found out I have hyper mobility syndrome which affects my bones and joints which I have since birth but has only just been diagnosed. I have IBS, Tinnitus, low vitamin D and calcium levels, hypothyroidism, short term memory problems, constant migraine, sleep apnea, neuropathy and trapped nerve.

My life has been turned upside down in the last three years, I have gone from being able to work full time to not being able to look after myself, but I have fibromyalgia and hyper mobility severely.

Pete MacKean

pete

I’m Pete MacKean aged 48 from Littlehampton Well I guess I have been battling with Fibro for around twenty years now and was diagnosed in January 2008 and had it confirmed by Professor Davies at Guy’s Hospital in November 2009. With all that I have learned over the past few years I can now probably see where all my troubles have begun.

Like so many folk we all seem to have other issues with our health and well being. Mine began when I was very small. I have a dry skin problem called Ichthyosis. It is a lack of Filigrin, a protein in the skin which helps to protect against damage from pollutants and other substances. My skin grows three to seven times faster than normal and is unable to become oily as it ages, therefore it cracks and peels, becoming flaky, or at least it did until I found a better way to manage it three years ago.

During my twenties I had had enough of my skin and found help at St Thomas’s Dermatology Unit in London where I began a course of Neotigason (acitretin) a vitamin A supplement. Anyway, long story short, it can cause problems with joints, aches and pains in muscles and bones. Sounds familiar! My skin did improve in the early years but later seemed to worsen; I think the med's stopped working or as I later found made weaker due to new regulations and different supplier.

Also in my twenties I had Peritonitis (for a fortnight) followed by the removal of my Appendix which apparently burst when they opened me up, very messy. But I pulled through and returned to work within a month, maybe too soon. This may be the classic trigger point with major body trauma as well as the med's for my skin condition, which I have stopped taking.

Anyway, in November 2007 I walked out of my job as I was becoming increasingly more tired, to the point that I worked all week and slept all weekend. Generally my sleep patterns were all over the place, un-rested I became stiffened in the joints and suffered a lot of leg, hip, back and neck pains, and still do to this day. Baring in mind my skin condition requires a lot of energy to grow making me more tired and dehydrated.

While out of work I sourced a very special lotion on the net which has improved my skin condition with amazing effect. My skin no longer flaky or dries the way it used to. The lotion is called Alpha Hydroxy Lotion made by Dermal Therapy and sold here in UK in Ipswich. I've put some more details on the 'Treatment and Medication' page, and this link will take you directly to where you can purchase it http://www.advancedcareproducts.co.uk/Shop/contents/en-uk/d1.html.

I have tried all sorts of pain killers for my fibro, none of which seem to work. I found I am too sensitive to use Amitriptyline, Duloxetine and Gabapentine which make me very drowsy, I sleep much better but don’t wake properly the next day, they knock me out for 48hrs, no good if I had to work regular hours and using the car or machinery would be far too dangerous being spaced out. And I was only on 20mg. So I am now on Pregabalin, much better, I sleep better and wake earlier, I feel less tired but I still ache. While sat at my PC my legs become numb, pins and needles set in, so I stand and my hips hurt, I feel like I have been kicked in the bum, constantly. My arms sensitive to the cold table top so I have a rolled up towel to lean on. I have my work top higher and now use a draftsman’s chair, which is little better, I can stand when I need to without having to leave the PC. I am now beginning to get tingling in my forearms to little fingers, this then spreads to the next two fingers. Some nerve damage I think, possibly sciatica or cervical as well. Also suffer with some sight problems like fogging and dreadful headaches that begin when I wake and can last all day.

So I have learnt to cope by doing less overall, I don’t rush around as much as I used to, and I only do stuff like hovering when I have the energy. But my biggest problem is the Work and Pensions and their lack of understanding on Fibro or refuse to admit it, while I have been seen by a Professor, a very old GP at W&P asked if I had proof of my illness when I had just shown him the letter from Prof. Davies. So I am confirmed by the medical profession and have to fight the Government.

Update: Now 2014, I am still out of work, with the last three years completing an HND in Computing and all things IT. The course was a real struggle burning me out in the evenings. But at least I was able to do most of the work at home and use my college time (3 days a week) to use for actual learning. During the last few years I have had the time to listen to my body while I lay in bed. I think the turn around point started with the Pregabalin which sorted my sleep pattern. I have become a bit of a spice junky as well, using spices like Cayenne Pepper, Cinnamon, Lemon and Ginger green tea, Turmeric and Black Pepper (details on herbal treatments under the Treatments menu). I like to think that all of these spices have jump started my system, shocked me back into feeling pain when I should and not all of the time. I also used a mini remedy of white cider vinegar and honey which can help with digestion (details on mini remedies under Treatments menu. My aches and pains have improved with the exception of my neck and hips. But when I tire I rest up. I am now a volunteer at a local museum two days a week and then able to recover the following day usually with a lye in.


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