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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

Fibro Support Information

Fibro Support

We have a website for our Main Charity www.fms-sas.co.uk, I have written some information for you to read and give to your family and friends so they can understand the syndrome better. Which in turn I can help you out should you require. Please feel free to email me (Nichola) any time on beauty_within_15@hotmail.co.uk You can also find information to print for yourself and your doctor from further down this page under the heading 'Useful Leaflets for You and Your Doctor' and there is of course more information at our parent site www.fms-sas.co.uk on the ‘Inform your Doctor - For the Medical Profession’ page. 

At the moment you are coming to terms with being unwell which are creating situation’s that can lead to depression. Unfortunately it can come with living with this condition. There are a few things that can help you to think clearer and understand what is happening to you.

Coming to terms with any health issue can take as long as you make it. I understand it is a challenge; however the quicker you learn about Fibro and any other conditions which come with it the easier it can be on your mental health as well as physical. As a support group we want to be able to help as many people as possible so please read up on Fibro, use the suggestions to put you on the right road to managing your health, learn about how your body works and listen to your body. We have a wealth of information in our library and talking to others can open up doors for various strategies that may give you more control.

Where to begin

  • Write a diary on how you are feeling each day.
  • What are you eating?
  • How are you sleeping?
  • When do you feel down?
  • What starts your moods off?

Fibromyalgia is a part of your life and is something you have to come to terms with, it does not have to rule you. You rule it! by the way you think and manage your body and life. You can be in charge of your daily looking after yourself. I am not going to pretend it is easy and there will be good and bad days. From experience looking after your health by eating correctly for your body and your fibro, exercising and getting into a positive mind set will make your life calmer and hopefully there will be more good days than bad.

It is important that you have people around you that understand fibro and how it makes you feel. We encourage family members, friends and carers to come along so they can give you the right support and gain knowledge of Fibro and learn all the challenges that come with it.

By learning about the condition and being able to listen to your body you will feel you've made a step forward. Thus making you feel better and more in control.

To get into the right frame of mind I suggest starting with finding a comfortable quite place on your own, then close your eyes and start breathing exercises, breathing slowly and deeply several times until you feel more relaxed, you may want to play some relaxing music, as an example  meditation CD’s can help the process. CD's are available to rent from our library. Start to wipe away what is going on in your mind. You will have to do this several times before mastering it just like anything you have to learn to get it right. It may be useful to do it every day around the same time but if that is a challenge then don’t worry just do it when you can.

By mastering a light meditation it can give you several positive outcomes.

  • You are clearing your mind so relaxing your body.
  • Stress levels will go down
  • You will feel more in control
  • You will be able to manage your day in a calmer way
  • Be able to think before you do anything

It is important for you to have a clear calm mind to go forward. Once you have mastered light meditation you will feel the benefit so you can make decisions about your next step in life with a calmer and more controlled manner.

Once you are feeling calmer and more in control you should visit your doctor again, explain that you need to see a specialist. You have the right to see anyone, and the doctor has to refer you. He or she will need a reason, your reason is simply you have been told that you may have Fibro and you need to hear more about it from a specialist. If you have not been diagnosed yet and it has been mentioned find some information out about fibro before you see your doctor so you feel confident to talk to them and you are happy to be referred to see a Rheumatologist. You can tell your doctor you have taken advice from your local fibro support group.

If you feel you want to go to London to see Prof Davies at Guy's hospital who is one of the top Rheumatologists. Then take his name with you to the doctors and ask to be referred. I was seeing him for a couple of years but then decided the journey was too much for me so I went to my doctor and asked to see Dr Chard or Dr Hepburn in Worthing hospital. They are fantastic. If you do not want to take medication then I advise you to look down the natural path. I personally have found it difficult to cope without pain killers, and have learned how to manage my condition. I also suffer with depression to which there are different levels.  Most fibro sufferers do take medication and find it hard to work but there are some that still work full and part time and also cope with natural products. It is down to how you are coping and how you suffer with fibro.

You are not alone and our support group is a great way to learn more and speak with people that are like minded and knowledgeable about living with fibro.

Emotions play one of the biggest parts in most health conditions and when you are in a low frame of mind it can be hard to cope with the pain and exhaustion to name a couple of Fibro, ME & CFS. . . I would love to have the magic wand to help all of you to become positive and well enough to manage your fibro. The only thing I can do apart from being here for you all is give you information that I have learnt and practiced.

I have put together some information to help you understand the condition and where you are finding yourself at the present time. Fibro is not curable but it can be managed, it is a syndrome so there are other health issues that come along with it. It is easy to say, think of others that have health conditions that are life threatening and totally debilitating. Saying that not everyone is at that point where they can help themselves when thinking that. It can’t help the person that is stuck in emotional turmoil and do not understand what is happening to them. We are all different. By saying this I mean, we all think in different ways, we have values and traditions which are not always going to be the same as the next person.  When reading this information I would like you to read it in stages, stop and think about what you have read, write notes if it helps. Allow yourself to get consumed in the advice. Once you have digested it all go back to the beginning and read it through again and see what you have got from it. Work on your gut feelings, take control of your health, don’t leave it to the doctors and the people you are around. Borrow or Buy the DVD’s which are available from your support group and invite who you want around to see it, stop it half way through and have a drink and a chat. Stress the importance it is for you to know they have an idea of what Fibro is and what it can do to you.

Some strategies to use as well as above are:

Exercise: I know this is a challenge especially when you are in pain but it has been proven that any exercise will help fibromyalgia sufferers. Plus many other conditions. It brings up the Serotonin, Melatonin & Endorphin levels which make you happy, it will boost your endocrine system that looks after your hormones; you start to feel better and have more energy. It has to be kept up. This does not mean going down the gym and go three to four time a week, unless you can. There are so many ways to exercise, it depends on you and what you are able to cope with. One thing is definite if you stick to doing exercises every day you will improve, your energy levels will increase your mood and improve, you will feel less pain thus being able to walk and move about with more ease than before. Of course as we all have other health issues it all will depend on your mental and physical health. Speak with your doctor about seeing a dietician and physiotherapist or someone that can advise you on exercises suited for your individual needs.

  • Avoid things that contribute to depression.  Alcohol, Sedatives, Antihistamines and other depressants is crucial. Look up on the internet more information. About the medication you are on and be at peace and confident with what you are taking.

  • Quick fixes that you are likely to come across on the internet are a waste of time and do not help you, as the disappointment out ways anything. Take medical advice first always.

  • Dietary modification: It has been proven now that food has an influence on your health especially Fibro. Many sufferers have allergies or intolerance, this can cause many different other conditions such as Candida Albicans, Thrush, Cystitis, Interstitial Cystitis/Painful Bladder Syndrome, Bowel Conditions & Digestive Problems just to name a few of the main ones. Sugar, Fruits, Wheat, Yeast & Diary are the main foods that can cause the conditions mentioned above. This is why it is important for you to manage fibro to understand your body and what you put in it. Just avoiding some foods can make your life better and you have control of a part of the syndrome, which will bring a more positive outlook for yourself.

  • Having an interest:  There are so many of us that do not have a hobby. When you are going through a life changing event it can help mentally if you have an interest. Some find Spiritual Values, Meditation, Prayer Reflection on deeper meanings, knitting, card making, selling candles the list is endless it can point the way to a more balanced mind when you are dealing with a health condition.  Having a passionate interest in life, being involved in something you truly care about, particularly as a motivator for making your own health a priority in our lives. Forming short term goals can help you achieve an overall wellness, too.

  • Experiment with water: See if hot or cold helps, usually hot is preferred but there are some that get something from cold water. Take Hot Baths during the day or if you can sit in a Jacuzzi. Exercise in a reasonable temperature pool. Steam Room and Sauna are good ways to help the pain as well; you can relax and eventually you will start to feel calmer and clearer in the mind.

  • Supplements: I have taken the recommended supplements & amounts from a website http://www.health4youonline.com/nutrition_facts_fibromyalgia.htm so please investigate some more if you can speak with a specialist, Holland & Barratt I find are very knowledgeable. If you can find a private shop that sells natural supplements they are also very knowledgeable and sometimes has a specialist come into the shop on a pre dated day that can give personal advice for free.

  • 1 x Multivitamin and mineral
  • 2 x Food Calcium and Magnesium
  • 2 x Bio-acidophilus (BioCare)
  • 1-2 capsules Ultra Vitamin C Plus bioflavanoids. 3 times a day (Higher Nature)
  • 1 x Vitamin B Complex (Biocare)
  • 2 x Advanced Antioxident Formula (Solgar)
  • 3 x 1000mg MSM (Organic Sulphur) (Higher Nature)
  • Consider DL-phenylalanine (DLPA) (Solgar)

Malabsorption problems are common with fibromyalgia, so a better than average diet is important, as well as higher than usual supplementation. I recommend: http://www.nutri-online1.co.uk

Learning: Keeping things up in life: It is a life lesson to learn about yourself your wants and needs. When you find yourself in a position that will change your health and therefore your life it takes time to adjust. Learning is the key to managing this condition and to do that successfully you have to accept it, eat the correct foods that will make you feel better, exercise like it is a part of your routine when you get up from sleeping, wash teeth dress eat and so on. Once you have accepted and have the right routine that suits you, you will find your emotional mind will feel better and positive, I am not saying that every day is going to be rosy, much as I'd like to. But you can face the day knowing you are helping your health and it could be much worse. Fibromyalgia is not curable but it is not terminal.

Money: There are many sufferers that are still working and I take my hat off to them. There is a large portion of people who are no longer able to do what they have done in the past. If you can or can’t work one of the most hardest problems is money. How are you going to live? How can I pay my rent and bills?

It is a big problem that can lead to depression. You have no extra money to buy the things you used to have and so on. Emotionally it can play a big part in the pain factor of fibro. It is not something a hard working person would have to think to hard about if they have worked all their lives but once struck down with any health problems it becomes a large worry. Yes you will have to change the way you live financially. There is nothing anyone can do about the past but there are things that can be done about the present.

I have put together some information for you to read and to research. With the help of one of our members and volunteers who is informative on these matters. If you need more help please just ask. If you do not have access to the internet go to your local library, they have computers there and normally are very informative.

Benefits: Another step will be to read up on your rights to benefit’s I enclose some details. I have added some sites for you to read up on.

http://www.benefitsnow.co.uk        http://www.dwp.gov.uk/employment-and-support

Disability Allowance:Most people get refused the first time so it’s always worth waiting a month or two and then reapplying again. They do this to weed out the people who aren’t really ill as apparently the "fakers" give up easily and those who are ill know they deserve it and apply again. If you have been turned down more than once the best thing to do is contact the ILA (Independent Living Association) apparently they have people who can help you fill in forms and also come with you to the appeal. They have only just restarted this again after a two month gap (which happened to be right when my case was grrrr). They need to show the doctor and specialist you are not just depressed as they will need to take proof with you to the tribunal in the form of letters from your doctors and specialists showing medical conditions. If you go empty handed they will not listen to you.

Incapacity Benefit:no longer exists, it is now called ESA, but is pretty much the same thing. It is harder to get on and requires doctors sick notes and also medicals to prove you are ill on a regular basis. They have really got quite strict as a lot of people seem to be faking illnesses recently. When you fill any forms in you need to fill them in speaking as if it is your worst day. Not an average day. I know this seems bad but in the months it takes for the claims to go through you might get worse. It’s not faking your illness but you can’t put 'Well some days I can do this. Some days I can do that...' otherwise they will say to you well some days you can work and refuse your benefit.

What Is Fibromyalgia ?

FMS (fibromyalgia syndrome) is a chronic widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons (the soft fibrous tissues in the body).  Most sufferers (fibromites) say that they ache all over. When they wake in the morning they feel like they have been run over by a truck and are as stiff as a board. They probably did not have a lot of sleep, everything they do during the day hurts and even if they take it easy, by the end of the day their muscles feel like they have done a full day's gardening.

Symptoms and Associated Syndromes:

Pain: The description of pain in FMS is extensive. Fibromites describe it as deep muscular aching, acute stabbing, throbbing, shooting, burning, gnawing and crawling. The pain moves around the body, it can be general in some areas and acute in others where it seems to settle for some time and then move on. The pain is usually worse after any form of exercise.

Fatigue: This can be constant in some people and periodic in others. This is not like feeling tired. It has been described as a sudden attack of fatigue that has you unable to lift your arms and legs, fighting to keep your eyes open and like you have the weight of an elephant sat on your head. It can be quite frightening if it happens when you are driving a car. Other people have constant or patches of fatigue that does not allow them enough brainpower to recognise what day it is or allow them to do their daily chores.

Brain Fog: Anybody who does not have this could never understand how the brain can get in such a muddle. It is thought that because the brain is processing so many messages of pain it cannot manage all the other messages it gets. Fibromites have forgetfulness, absentmindedness confusion, short-term memory difficulties, extreme mental fatigue and periods of Fibro Fog (Like looking at the world from inside a cloudy glass bottle? detached, distorted and unclear)

Sleep Disorder: Most Fibromites have poor sleep. They wake up in the morning feeling like they have not slept a wink. They have trouble falling asleep or fall asleep easily only to wake at 3.00 or 4.00am and not be able to get back to sleep. This is apparently due to a sleep disorder called alpha-EEG abnormality. This happens due to the deep sleep (level 4 stage of sleep) constantly being interrupted by bursts of awake-like brain activity. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, Such as sleep apnea, sleep myoclonus (night time jerking of the arms and legs) and restless legs syndrome. Those that can sleep often over sleep and cannot seem to help it.

Other Common Symptoms: Stiffness, Headaches, numbness, tingling sensations, muscle twitching and cramping, irritable bladder, constipation, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, visual problems, sensitivities to odours, loud noises and bright lights, painful periods and premenstrual syndrome. (See below for more!)

Aggravating Factors:

Changes in the weather: cold, damp or drafty environments, hormonal fluctuations, stress, depression and over-exertion.

What is the Prognosis? Better than ever before!!! The raising of awareness of Fibromyalgia by individuals, support groups and organisations and medical professionals will all help to improve the quality of life for people living with FM. By seeking new information, talking to others, re-evaluating daily priorities, making lifestyle changes and keeping a hopeful attitude the FM sufferer can become the FM survivor.

Symptoms of Fibromyalgia:

1. Pain
2. Fatigue
3. Sleep disorder
4. Morning stiffness
5. Cognitive or memory impairment
6. Irritable bowel
7. Chronic headaches
8. TMJ syndrome
9. Numbness and tingling sensation
10. Muscle twitching
11. Skin sensitivities
12. Dry eyes and mouth
13. Dizziness
14. Allergic symptoms
15. Mitral valve prolapse
16. Heel or arch pain
17. Brain fatigue
18. Painful periods
19. Chest pains, non cardiac
20. Depression
21. Panic attacks
22. Irritable bladder
23. Multiple chemical sensitivities
24. Joint hyper mobility
25. Suicidal
26. Personality changes
27. Light-headedness
28. Disequilibrium
29. Severe muscle weakness
30. Intolerance of bright lights
31. Alteration of taste, smell, hearing
32. Low frequency, sensor neural hearing loss
33. Decreased painful sound threshold
34. Ringing in the ears
35. Exaggerated involuntary rapid eye movement
36. Changes in visual acuity
37. Intolerance of alcohol
38. Enhancement of medication side effects
39. Intolerance of previously tolerated medications
40. Severe nasal and other allergies possible sinus infections
41. Weight change (gain)
42. Muscle and joint aches
43. Night sweats
44. Heart palpitations
45. Muscle spasms
46. Reynaud’s-like symptoms
47. Carpal tunnel syndrome
48. Heartburn
49. Difficulty swallowing
50. interstitial cystitis

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