Fibromyalgia Support Group for Surrey and Sussex

From the moment we are born we start to ‘hoover’ up experiences and copy those around us in order to decide how we will behave. Genetic inheritance coupled with this results in our personalities as adults. For this reason our early years are extremely important and give us grounding which assists or damages when we are faced with adult difficulties.

The above is a simple way of explaining who and what we are. However none of us are very good at looking at ourselves and when we are faced with difficulties of any sort it is hard for us to see the wood for the trees. We would mostly prefer Mummy to make it better, again linking with our childhoods. Or maybe we just hope it will go away. This is where counselling support can help.

When I visited the Crawley branch of the group to give a talk on counselling, it struck me that Fibromyalgia calls upon many different aspects of our psychological personalities. Is it harder to be accepted for having an illness which can’t actually be seen? – Probably. Do people believe you? How do and could one cope with that. And what of our partners? They probably met us before the illness and now we are a different person. How do they manage? Like riding a seesaw, in a relationship, what affects one partner automatically affects the other. It is very hard to see what is going on in our own relationships and having a third party counsellor who can observe and explore behaviour enables people to understand and then makes it possible to make choices. Counselling is not to instruct but to assist when the way is not clear or when the burden is too heavy to bear.

I began counselling as a listener with the Samaritans for twenty years. There I was able to work with people from all walks of life and learned much about the differences in people and their ways. From this my interest increased and I applied and was accepted for more formal training as a counsellor. During my training I noticed that where sexual problems were involved the pain was very different and very private. It is not easy to talk to friends or family about sexual difficulties and therefore they become very lonely problems. So sad when so many of them are resolvable. I therefore decided to add a specialisation to my training and obtained a diploma in psychosexual therapy. I continued working with Relate until 2004 when I commenced a private practice.

Recently I was asked to write this article as an introduction to myself as a possible support system for members of the Fibromyalgia Support Group. Should anyone feel that they have issues which are causing pain then please do feel able to contact me - 01403 790928. I would be pleased to talk things over and help in finding a way forward.

A good night's sleep eludes many people and is a major problem for many CFS/FMS patients. Lack of sleep severely depresses the immune system and leaves one impaired in daily functioning.

The reasons for this inability to sleep well are varied and the same answer does not apply to everyone. The following suggestions may be helpful for improving sleep. It is always a good idea to check with your doctor or pharmacists before starting any new treatments, especially medicines even if they are over the counter.

Set a time that you would like to go to sleep. Two hours before this set time do not listen to or read any news or engage in any conversations, phone calls or any other activity that might upset you. Listen to soft music, practice deep breathing, and prepare for sleep by taking a warm bath or sponging off. Some form of meditation, reading or having someone read aloud soothing poetry or other non stimulating material can help to calm one in preparation for sleep. Engage in NOTHING that is stimulating or controversial.

One hour before your anticipated sleep time you might want to try the following supplement called Valerian, which might be helpful. Valerian root is an herb with a long history of aiding sleep. Long term usage of valerian may lead to withdrawal symptoms if discontinued suddenly and be sure to take periodic "time off" to lessen the likelihood of addiction. Other suggestions that may be conducive to sleep: No lights, radios, clocks or appliances near you.

Electro-magnetic fields can interfere with sleep. Cover your eyes with a dark soft eye cover. They are available in satin or other material at specialty stores. If you cannot find this item, make one from any soft dark material or even an old sock. Our bodies make natural melatonin in response to darkness and stop the manufacture of it in the presence of light.(1)

Upper Airway Resistance Syndrome

Upper Airway Resistance Syndrome (“UARS”) is something that has recently become a major area of research for FMS/CFS/ME and it’s caused by Allergic Rhinitis (chronic nasal stuffiness, post-nasal drip or nasal allergies). Rhinitis is a common atopic illness that effects 20 to 30 percent of the population, and allergic rhinitis has been shown to disrupt sleep. Given the interactions among the hypothalamic-pituitary-adrenal axis, neural and immune system, an allergen, similar to an infectious agent, can initiate a variety of symptoms along with severe fatigue, as seen in patients with CFS.

Exacerbations of allergic disease, such as rhinitis, could affect cytokine levels and natural killer cell function, thereby producing the abnormal immunologic and endocrine profiles seen in patients with CFS. More recent data suggest that the rhinitis in CFS is not allergy induced but is instead thought to be secondary to the neuroendoctine disorders commonly found in CFS.2 What this means is that UARS or Allergic Rhinitis (“AR”) can cause the patient to have frequent arousals during deep sleep and this could create many of the problems FMS/ME/CFS patients’ experience from pain, fatigue to immune dysfunction.

Most patients will have heard of the other main cause of breathing problems in sleep called Obstructive Sleep Apnea Syndrome (“OSAS”). In this condition patients breathe through a Continuous Positive Airway Pressure (“CPAP”) device. Patients with UARS who are unresponsive to the treatments detailed below may also need to consider having a sleep study to see if they need to use a CPAP device.

A recent study by Dr Avram Gold showed that 27 of 28 FMS patients met the criteria for UARS and that after three week treatment on CPAP a substantial reduction in FMS symptoms (ranging from 23-47%) was achieved. Despite dramatic symptom improvements, only 36% of the patients placed on CPAP were still using it nine months later, mainly due to the fact that two thirds of the patients also had AR and this increases nasal resistance and impairs one’s ability to breathe nasally.3 However, there are other treatments that can improve one’s likelihood to be able to use CPAP and they may even be enough to reduce your UARS on their own.(4) So in addition to the sleep and pain medicines Prof. Davies prescribes for you the following may help:

Don’t use oral decongestants, such as pseudoephedrine (e.g. Sudafed) as they are stimulating agents that destroy sleep and cause drying of the nasal membranes, which aggravates chronic UARS or AR;(5)

• A second generation over the counter antihistamine may help with itching, watery eyes or a runny noise but they won’t help your congestion or breathing much - Certizine (Zirtec take at night as it can cause sedation) or Loratadine (Clarityn);(5)

• Nasal Sprays, for example over the counter – Flixonase (Fluticasone) or Beconase (Beclomaethasone) have been shown to reduce congestion, improve breathing and sleep in UARS or AR and could help.5 If you don’t try these you could try Rynacrom (Sodium Cromoglycate) as this blocks mast cells which could also be making your AR problems worse. Only use one type of Nasal Spray at a time;

• Cervical neck support pillows have been show to make a significant improvement in respiratory disturbance in mild-to-moderate OSAS and could help UARS (as URAS can become OSAS over time).(6) Look for memory foam in any pillow you buy;

• Sleep on your side and not your back as this is an easier way to breathe whilst sleeping;(4)

• The prescription medicines Singulair (Montelukast) or Accolate (Zafirlukast) have been shown to reduce congestion, improve breathing and sleep in UARS and may also help, especially if combined with one of the Nasal Sprays detailed above;(5)

• Check for and treat Asthma, as this can also cause night-time awakenings and will disrupt your sleep further;

• Consider a sleep study for CPAP if the above does not work and your insomnia/sleep problems are still severe.(4)

Pacing is perhaps one of the hardest things for M.E./CFS and Fibromyalgia sufferers to learn to do, as many lead very active lives before becoming ill. Dr Anne MacIntyre has stated that pacing can help sufferers achieve “some gradual recovery, but they must stop before they even start to feel ill and save some energy for getting better”. It also helps to not be too rigid or inflexible, as life always throws up situations that need to be dealt with there and then. Hopefully if you have not been pushing yourself too hard, you should have some reserves left to deal with these unexpected situations.
Some people have found that when they are setting their goals for the day it helps if they use a diary and write down the activities that they plan to do for that day or the upcoming week. Action for M.E. have an information sheet on pacing, grading exercise and rest and in it they write “Pacing is about learning what activities your body will tolerate without causing a relapse, and taking a positive attitude to recovery discovering your limitations... It is impossible to give precise guidance about how much you should do or how long your recovery will take. Every person is different, which is why pacing is a personal programme that each individual develops to establish how much they can do. But do not be disappointed if it takes time, overdoing it in a rush to get there may well set your recovery back”. Remember, all things in moderation....even moderation.

Here are a few guide lines to get you started:-

1. Set clear goals (for this you may need to write your goals down or keep a diary).

2. Rest should really be restful (this may take some explaining to family and friends, that you may find relaxation or meditation techniques, deep breathing or quiet music helpful).

3. Don’t feel guilty, you can only do what you can do.

4. Be realistic and accept your limitations, especially early in your illness or recovery.

5. Graded activity (see next section).

Graded Activity

Sharon Clark, PhD (an FMS researcher and exercise physiologist) has, amongst others, written extensively about exercising for FMS. “Walking has been described as possibly the perfect exercise. It’s not high impact or too strenuous, and you already know how to do it. It’s not expensive and, except for a good pair of walking shoes, it requires no special equipment”. A walking programme is something many people can successfully do and it’s easy to fit into your day-to-day schedule. However, if all you can do is walk across the room, build up slowly from there. Don’t compare your increases with what you could do before you became ill. Please remember, better to do too little than too much. Whatever you believe you can achieve.....do half.

Several studies now show that exercise is important for pain relief. Even if your pain doesn’t significantly decrease, it’s good for your heart and lungs and can improve your mood. Walking is also important to build strong bones to help prevent osteoporosis, and strong muscles to help protect you from injury. As most people with FMS/CFS become sedentary, this is especially important.

It is also important to realise that you don’t have to do 20-40 minutes continuously all the time. You can break up your walking into a few minutes here and 10 minutes there, but try to keep your total for the day up to 20-40 minutes (if it doesn’t put your recovery back a useful guide is to increase your activity by 10-20% maximum every week). If you can do this three to four times a week it will be very beneficial to your health.

Switching

Dr Ellen Gouldsmit wrote the original article about switching. Switching from one activity to another may seem an obvious way to reduce your pain and fatigue, but she stated that the key is to do it before you get tired or have an increase in pain. For example, go for a short walk and then watch TV or prepare your next meal. Have a chat on the phone and then play piano or read. If your brain gets tired, switch to something that is restful. If you are typing or on a computer, take a break and do some filing. As always, whatever you think you can do....do half.

Reducing Stress

Stress has always been with us, without it people would never accomplish their goals. But if the stress becomes distressing it can be a problem, and in our rapidly changing world the levels of stress are always increasing. How we deal with stress can impact FMS/CFS detrimentally. Dr M Martinez-Lavin recently discussed the Autonomic Dysfunction in FMS in the FMS Network newsletter. There are many studies showing that FMS patients have an overactive sympathetic system and underactive parasympathetic system. These are the two branches of your ANS (autonomic nervous system), consisting of the sympathetic system which accelerates most of your bodies functions and should be most active during the day to keep you going, and your parasympathetic system which should be most active during the evening when your body needs to be sleeping and performing all the essential functions associated with a good night’s sleep. If your ANS is out of balance it means your sympathetic system is too active during the night (when the Parasympathetic system should take over) and this could interfere with your sleep. Many doctors think that in FMS the ANS is persistently hyperactive.Additionally, a recent study of college students given a superficial wound during final exams and again during summer break showed the wounds took 40 percent longer to heal during the stressful exam period. So a visit to a sympathetic Cognitive Behavioural Therapist or some other stress reduction method could be a useful part of your rehabilitation programme, as it could help reduce your stress levels and this would positively affect your sympathetic system. All this could help with your sleep, healing, fatigue and perhaps even your pain.

Ten guidelines for reducing stress.

None of us are perfect, nor should we try to be.

Do NOT try to be all things to all people.

Leave things undone that don’t need to be done.

Do NOT spread yourself too thinly.

Learn to say ‘NO’.

Schedule time for yourself, and your support network.

Switch OFF and do nothing regularly.

Be boring, untidy, inelegant and unattractive at times.

Do NOT even feel guilty.

You should NOT be your own worst enemy, but be your own best friend.

Remember to value you for whom you are, not the label you had before you became ill, i.e., lawyer, builder, nurse, teacher, etc. You are a worthwhile human being who did those things before you became ill for a career or job. Please try to remember that illness does not reduce one’s humanity, you are still you. You are not alone, none of us are. Build a support network and try to help each other.

Rest and Sleep

Remember that excessive rest can reduce muscle tone, strength, heart and lung function. So please try to do as much as you can, without putting yourself back. But please be careful not to over do it! Too little activity during the day can also make it hard to get sleep at night. If you do need to rest during the day, 1/2 hour breaks with your eyes shut spread over the course of the day in a quite room can be helpful. Once again, whatever you feel capable of.....do half.

To make it easier to sleep at night reduce or cut out all caffeine, and have none after 6 PM. Some people find spicy foods too close to bedtime can also be a problem. If you still have trouble getting to sleep, don’t watch TV one hour or so before bedtime. Try reading a book instead, listening to classical music or a relaxation tape. Some people find quiet meditation or prayer before going to sleep helps relax them.

Positive State of Mind

Finally, many doctors and researchers think that one of the most important tools for improving any condition, is a positive state of mind. Remember that many patients make a recovery (from some extent to another) with careful management of their FMS/CFS/ME. So a positive state of mind could help you achieve the best recovery possible.

FMS is an illness that emerges when a lot of neurological processes have gone wrong and the nervous system is exhausted. For treatment purposes it may best to view FMS as a collection of symptoms rather than a single condition in order to work ones' way back to health. FMS is a very real illness with sleep and pain regulation problems. We know that there are problems with low - Serotonin, noradrenalin, dopamine, growth hormone, endorphins and GABA, while Substance P is 3 times higher that it should be. There are currently medicines that already treat these problems and we do our very best to find the correct combination of medicines to help every patient become as well as possible.

Treatment of FMS has moved forward greatly recently and UK patients can now receive the same cutting edge treatment they would receive at the best FMS Clinics anywhere in the world at our London clinic. From years of experience treating FMS we know that patients are responding, often to a great degree, with multiple interventions to break the cycle of FMS. We have many patients who are responding to a mix of pregabalin, zolpidem, trigger point injections, pacing - rest, plus lignocaine and magnesium infusions. There are several other medicines that we are looking at that have shown improvements in clinical trials on FMS and we plan to use them, together with the existing successful treatments, to hopefully bring more relief to even more patients. It is important to note that most of the medicines used at our clinics have low side effects and it has been Prof. Davies experience in clinical use that most patients can tolerate these medicines. The total combined effect is much greater than any single therapy on its own.

Our research shows that to give several medicines and therapies together reduce the various underlying problems and give the patient's body a chance to rest and heal. With any chronic condition it is important to retain a positive attitude as the mind is a powerful tool for healing. Additionally, it is important to keep an open mind and try medicines and treatments that are showing positive benefit in FMS. This approach can often bring about substantial and sometimes complete remission of FMS. Please see the following websites for more information - www.fmsclinic.co.uk, www.endfatigue.com and www.PacificRheumatology.com

Clinic Manager for Prof. John Davies

The first sign of my illness came when I was 19 when I suffered really bad stomach pains. I lived on a stomach medication until I became pregnant at 25 and the stomach pains miraculously disappeared. I suffered from Post Natal Depression but then my life was fine until my life became stressful due to a bereavement and moving house. It was then that I started getting pain in different places of my body. For no reason my knee started hurting, then my neck, then my back. I was off work for months. I then started getting vertigo, which was very frightening.

I also had odd dizzy spells, menstrual problems, allergies – you name it, I had it. I saw different specialists – rheumatologist for my back, ear, nose and throat specialist for my dizziness etc. I went back to work but lived on strong painkillers. It was never suggested to me that I may have thyroid trouble, even though my sister had thyroid disease. I didn’t know that it ran in families, and that I could have the same problem.

I became pregnant again and I felt much better during my pregnancy but soon after the birth, I became ill again with joint and back pain. I was classed as having postnatal depression again. I changed doctors and although he suspected thyroid problems, and sent me for blood tests on two separate occasions, both coming back in the normal range. He was very kind and suggested Prozac, but I knew I was more fed up than depressed!

I had very dry eyes and had to use saline drops to open them in the mornings. I had no hair on my legs or under my arms but I never thought to mention this to my doctor. I had Reynaud’s Syndrome and Carpel Tunnel Syndrome. I was constantly cold and my head hair was falling out in handfuls. My skin was very dry and I was incredibly tired all the time. I put on even more weight, even though I’d tried every diet club going and was eating very little. I felt like I was in a continual fog – I couldn’t concentrate and would forget what I was going to say in the middle of a sentence. I had pins and needles in odd places and numb spots on my back. By now my file was so thick; even I was beginning to believe I was a hypochondriac! I was diagnosed with fibrositis, which I understand now is the old name for fibromyalgia.

I saw osteopaths, chiropractors, iridologists, healers, and homeopaths. My reflexologist told me that I had problems with my thyroid. My doctor tested for menopausal symptoms, but these came back normal too. I went home in tears of fear, anger and frustration.

I carried on as usual and one morning a lump appeared in my throat. As you can imagine, I zoomed to the GP thinking the worst. Tests were carried out, one being a fine needle aspiration of the thyroid. They couldn’t tell me definitely that it wasn’t cancer so an appointment was made to have a thyroidectomy. Whilst waiting for my ECG, I bought a Woman Magazine. I read an article by Diane Holmes regarding the blood test results. I telephoned her and received the Thyroid Action Group Pack. Diana had been diagnosed with celiac disease, epilepsy, polymyalgia rheumatica, ME and myasthenia gravis at different times of her life, whilst the medical profession was trying to find out what was wrong with her! Now I was convinced that I had had an underactive thyroid for a very long time!

After the operation, in 1996, I was given 200 mcg of thyroxine. Although I thought this was too much, the district nurse insisted that the doctor was right – so I took it. I was so ill – I thought I was dying. My heart banged away all night, I was so hot and I was sweating profusely. The next day my GP suggested I reduce the dose. I then decided that the medical profession clearly didn’t know what they were doing and I decided to self-treat. I dropped my dose right down and slowly upped it 25mcg at a time until I felt better, using the Basal Temperature Test as a guide. When I went back to see the Consultant who did my operation, he told me “You’ve probably been underactive for some time”. I could have kissed him!

Slowly, over a period of 18 months, I got much, much better. One by one, the symptoms improved and this proved to me that there was a problem with the diagnosing of thyroid disease and that it is possible to be hypothyroid (and indeed hyperthyroid) and still be within the range. I started helping Diana and I set up a coffee morning in my house for people suffering from both diagnosed and undiagnosed thyroid disease.

After appearing on BBC Watchdog Health, I received hundreds of letters from people who were ill with symptoms of thyroid disease. When Diana left the group I took over and gradually collected more people who wanted to help. I set up a Committee and we decided to change the name to Thyroid UK. Hopefully, we will become a Registered Charity soon.

I realise that I will never be what I was health-wise, but I am happy with 90/95% and I know that we have helped many people attain this goal. I have come to realise that thyroid disease can be caused by many different things – stress, bad nutrition, adrenal problems, other hormonal problems etc. Sometimes people have been misdiagnosed and I have seen people with fibromyalgia and ME get better on thyroid treatment.

The main thing I tell everyone is to ask questions! Ask which tests they have had done, what the ranges are and where they are in the range. Thyroid UK is trying to raise awareness so that people aren’t ill for years and years, as I was.

What is Fibromyalgia?

Fibromyalgia is a chronic disorder characterised by widespread pain all over the body. Sufferers may also suffer from various other related symptoms such as disturbed sleep, depression, anxiety, irritable bowel syndrome, fatigue (tiredness), stiffness when waking and headaches. The condition is poorly understood and is usually diagnosed by a doctor or therapist pressing 18 anatomically defined ‘tender spots’ on the body to check for abnormal sensitivity.

What causes Fibromyalgia?

Fibromyalgia is predominantly caused by widespread fascial restrictions all over the body. The fascia is the tough connective tissue, which covers every muscle, muscle fibre, nerve and organ in the body. In fibromyalgia sufferers this 'web' of fascia has become dehydrated and tightened around sensitive structures of the body. 'Restrictions' (extra strands/areas of fascia which should not be there) also develop between areas of fascia. These fascial problems cause widespread pain, dysfunction, make movement more tiring and inhibit cell/tissue function and circulation. The reason fibromyalgia is poorly understood and difficult to diagnose is that fascial restrictions do not show up on any conventional medical tests (eg. X-rays, MRI scans, blood tests etc). Fascial restrictions also cannot be treated by conventional means (eg. They cannot be treated by operations or medication).

Fascial problems can develop for many varied reasons including physical trauma/injury, muscular tension, stress/depression, dehydration, scarring/operations, emotional trauma/bereavement, postural problems and poor lifestyle. Some experts also believe that a viral infection may often be a precursor to fibromyalgia. Often it is however, not possible to identify the precise cause of fibromyalgia in an individual and a combination of various different factors is more likely to be the cause.

Fibromyalgia sufferers have also been found to have increased levels of ‘substance p’ in their bodies which makes their nervous system overly sensitive to pain (what would be a slight ache to most people can be severe pain to a fibromyalgia sufferer). It is also thought that some fibromyalgia sufferer’s tissues may have become deficient in energy producing fuel. The body will then break down muscle tissue to provide the fuel needed for energy production which may also contribute to the pain, fatigue and fascial restrictions associated with fibromyalgia.

How can fibromyalgia symptoms be eased/treated?

Treatment
Myofascial Release and Trigger Point Therapy Fibromyalgia requires specialist (and gentle) treatment. Conventional massage, manipulation and acupuncture do not affect the fascial problems responsible for fibromyalgia syndrome (though they may ease the pain associated with these problems in some cases). A fibromyalgia sufferer will therefore need to find a Myofascial Release practitioner to effectively treat them (see www.myofascialrelease.com or read John Barnes’s book ‘Healing Ancient Wounds’ for more information). A Myofascial Release practitioner who has also trained in Trigger Point Therapy will be especially well qualified to effectively treat fibromyalgia.

A course of treatment will be required as it takes a number of treatments to release all the restrictions in a fibromyalgia sufferer’s body. It is common for fibromyalgia sufferers to be quite sore for a day or two after treatment. It is however, essential for their recovery to break down these restrictions and they will usually feel the benefits after a couple of days.

Supplements and Nutrition
A good diet is important for the fibromyalgia sufferer for numerous reasons. A diet rich in fruit and vegetables and low in processed food is suggested. Apples, nuts and grains may be particularly beneficial due to their high magnesium/malic acid content!

Magnesium
Individuals with fibromyalgia are often deficient in magnesium which is needed for muscle relaxation, energy production in cells, nerve impulse transmission and also has a natural calming effect. Supplementing magnesium has been shown to ease pain, muscle spasm, anxiety and sleep problems in fibromyalgia sufferers. It is important to take magnesium citrate or chelate rather than cheaper, less bio available magnesium compounds. Recommended dose: 250mg/day, taken with a meal.

MSM
MSM is an organic sulphur compound which has been shown to have anti-inflammatory and detoxifying properties and is used by the body to support healthy muscles and connective tissue (fascia). MSM also supports healthy nerves, metabolism and immune function. MSM is thought to ease pain and stiffness in fibromyalgia sufferers. Recommended dose: take 3, 1000mg tablets a day, with food.

5 HTP
This supplement may be particularly beneficial for fibromyalgia sufferers who suffer with anxiety, depression, fatigue or sleep problems but many individuals have also reported it also eased their pain. 5 HTP is used by the body to produce serotonin, a neurotransmitter important in maintaining balanced mood, regulating pain sensitivity and promoting energy. Recommended dose: Take 3, 100mg tablets a day.

High quality multivitamin, mineral and anti-oxidant
Individuals suffering with fibromyalgia are often deficient in nutrients essential for body health and immune function. Extensive fascial restrictions can also lead to a build up of toxins/metabolic waste products in the body and a good intake of vitamins and anti-oxidants will help rid the body of these. A quality multivitamin, mineral and anti-oxidant is therefore important to aid an individual’s recovery from fibromyalgia. I recommend Usana’s ‘Essentials’ which have been independently proven to be the best on the market.

Olive Leaf Extract + ImmuneC (Vitamin C and Zinc)
These supplements are particularly relevant for individuals who suffered illness/viral infection prior to developing fibromyalgia. They help the immune system fight any infection which may be aggravating/causing the fibromyalgia. They can be purchased from Higher Nature. Take 3 x ImmuneC and 3 x Olive Leaf Extract (500mg) per day, with food (for 1 month).

*Myofascial release will still be required to release fascial restrictions as supplementation cannot do this in itself!

Exercise and Lifestyle
Low intensity exercise (eg. walking and swimming) may be beneficial for fibromyalgia sufferers as its helps keep their body systems healthy, removes toxins, balances mood and aids restful sleep. It is important that sufferers drink plenty of water and few diuretics as dehydration can aggravate fascial problems. Stretching can also help prevent fascial restrictions ‘tightening up’ which may lead to increased pain. A generally healthy lifestyle is recommended to aid recovery and reduce the chance of further fascial restrictions developing. If the individual suffering with fibromyalgia is prone to stress then it would also be wise for them to learn a relaxation technique such as meditation or tai chi, or to have a regular reflexology treatment. Stressful situations should be avoided if possible!

What other help is available to fibromyalgia sufferers?

There are numerous local help groups where sufferers can share their experiences and give each other advice or support. Ask your GP or use the internet to search for local groups. There are also many websites dedicated to the support of fibromyalgia sufferers. Try:

Fibromyalgia Syndrome (FMS) is a little understood chronic condition and is often misdiagnosed at onset for other disorders such as M.E, Lupus, and arthritis related conditions. However, doctors are getting better at diagnosing it now, as there has been more advances in The States into this debilitating condition. FMS is difficult to diagnose and treat, and is not curable, although it is also not degenerative, as far as we know Many sufferers have been to and from their GP’s for years with various symptoms, and have often felt self doubt through the ongoing search for a diagnosis.

FMS profoundly affects your ability to manage your day to day life. It is a chronic condition that can affect every aspect of your life, for the rest of your life, so it is important to develop strategies to manage it.

Mostly it is women that are affected (although it is on the increase for men and also children and teenagers) and sometimes symptoms are put down to the Menopause in a certain age range of women. It is thought that there can be several factors which can trigger this condition, among them whiplash and trauma injuries, stress and grief. Quite a large percentage of women who contract this condition have been carers or nurses or who have worked in particularly stressful environments. It in uncertain why FMS is on the increase, whether it is due to ongoing stress levels in modern life, or whether there are other factors involved.

The problem with FMS is that it tends to go hand-in-hand with Chronic Myofascial Pain Syndrome (CMP) and many sufferers experience both.. CMP affects the myofascia which is the thin film around muscle tissue, which can turn from liquid to solid and back again. However, with FMS and CMP not all the symptoms are physical, and there are so many other symptoms which affect the individual chronically.

One of the major symptoms is evident on waking - the only way to describe it would be to say “ I feel like I’ve been run over by a steam roller overnight” as every muscle and part of the body hurts. You feel as if you haven’t slept at all, in fact, that is one of the primary factors - your sleep patterns are fragmented with the result that you do not achieve the right levels of sleep. After a period of time, your cells do not rejuvenate which results in chronic fatigue. In brain scans it shows that there is a decreased blood flow to the right caudate nucleus of the brain and also the left and right thalami.

Most FMS and CMP sufferers experience some or all of the following :

• Stiff neck

• Chronic back pain

• Continual pain in hips, knees and feet

• Pins and needles in joints and on face, particularly cheekbones

• Lack of co-ordination

• Rapid, fluttery and erratic heartbeat

• Headaches

• Itchy skin

• Leaky gut and Irritable Bowel Syndrome

• Thinning hair and ridged fingernails

• Shortness of breath / panic attacks

• Changing and hoarse voice

• Sweats and flushes

• Tinnitus

• Sensitivity to light, noise and odour

• Muscle cramps and twitches

• Restless leg syndrome

• Frequent yeast infections

• S.A.D.

• Loss of recognition of familiar places

• Blurring of vision and problems with night driving

• Depression

• Dizziness

People live with FMS and CMP and frequently experience severe flare ups which can be caused by triggers such as being overtired, too much exercise, family friction or stress at work.

The problems with FMS is that the sufferer is living on a day to basis with chronic pain and related symptoms which severely affect their normal working life. They are unable to exercise normally, as repetitive motion causes more flare ups. They cannot lift or carry items without some sort of repercussion. They feel continually exhausted, are unable to sleep properly and do not travel well. They are unable to sit for longer than 20 minutes at a time before stiffening up. All in all, life becomes very difficult physically , in fact unbearable sometimes. And that is without the psychological and mental problems that this affliction causes, namely depression, lack of concentration and something which is referred to as Fibro-fog.

Sufferers with FMS continually get their words mixed up or cannot remember words or names. They suffer from short term memory loss, and can wander about for ages looking for items they can’t find. They have reduced co-ordination skills, so everyday tasks become very difficult and they frequently lose the ability to recognise their surroundings. They can travel the same route for years but suddenly, they are unable to recognise it, or if they approach from a different direction, don’t recognise it at all. They are unable to continue to drive at night safely and have a delayed, inappropriate and exaggerated nervous system response. Loud noises and flashing lights can all add to the experience of being unable to cope. All of these conditions can depress even the most stalwart of sufferers, as they feel that their lives are out of their control. The result is a loss of self esteem and some become introverted and unable to share exactly how they feel with their families and friends. It is usual for FMS sufferers to feel cut off from life, especially as there is not a lot of help out there for them.

Most GP’s know little about the condition and frequently are unable to diagnose it. There is a Professor at Guys Hospital in London who specialises in treatment of FMS but the local PCT will not fund this, so patients have to try and afford treatment themselves. This is not easy if you have had to give up work, or reduce working hours because of this chronic condition. Disability and Invalidity Allowances are hard to get, as frequently people do not understand how ill you feel, as "you always look good!" It’s no good trying to explain that you shouldn’t go by appearances, as most people frequently do. If you haven’t got some limb in plaster or are obviously ill, then you are expected to get on with things. It’s amazing how judgemental people can be, unless they suffer from some chronic condition that makes them realise how unsympathetic they have been in the past towards others.

Although there has been a recent convention in The States into FMS and CMP, there is still little out there in the U.K. for most sufferers. There are many alternative therapies such as Acupuncture, Bowen Technique and Hydrotherapy which may help, but all of them cost money. There are also many mineral and vitamin supplements which can help relieve some symptoms.

New research into FMS in the States has uncovered some extremely interesting facts. Mainly that the origin of FMS is actually in the brain, and is triggered by stress and the function of dopamine. With the advent of new brain imaging technologies it appears that the hippocampus part of the brain becomes hyperactive resulting in changes in the chemical make up. The hippocampus controls dopamine release which affects the control of pain. As a result more information enters the brain unclothed by dopamine. This would also explain cognitive difficulties experienced by FMS sufferers. Therefore the “flight or fight” reactions remain active in someone with FMS with the result that they are wide awake during the night.

There is an excellent series of books by Devin J Starlanyl who is a doctor who has FMS and CMP herself which are extremely helpful. There is also the Fibromyalgia Support Group at www.fibromyalgia-south.com. You can also buy a new DVD called “ Fibromyalgia - Show Me Where It Hurts” which costs £18.99 including p& p and can be obtained from the above. The helpline telephone number is 01403 255450.

Hopefully with all this new information our own doctors and specialists will exhibit more understanding of this life-destroying syndrome, and offer more support and possible therapies to help anyone in this situation.