Saturday, 13 August 2011

Greetings to you all
This week I have amazed myself by being able to walk much greater distances than I have for many many months.  Not without some resulting pain, BUT it has given me a sense of achievement.  I have fought to regain mobility since my hip dislocation in April and have exceeded my own expectations.  This may not all be due to determination!  It might be accounted for by the Juice Plus capsules I have been taking for the last two weeks.
32.  Some people wait for a miracle to start living their lives happily.  Others use that time and create the miracle themselves.
HELP NEEDED by ATOS Victims’ Group
(I hope these embedded links will work for you)
“If you would like to send us your personal experience of your Atos assessment then please do so, you don't have to be worried about using your real identity, an alias will suffice, we all know what Atos and the DWP are like.
Your account could be added to the growing list of other peoples personal tales of horror and suffering which Atos & DWP are causing, once we have enough stories we shall be producing a document to go online for all to see and read, we shall also be asking people to send a copy to their constituent MP, a copy will be sent to the Work & Pensions Committee, newspapers, TV companies, radio stations etc, we think this will show the wider public what can happen to them, what they may have to go through should they become sick, disabled through no fault of their own.
Being able to achieve this means that people have to make an effort to send in their stories, without those stories/experiences we will not be able to achieve our aims.
I'm quite sure there are thousands of people out there who have a tale to tell about their Atos experience, you can help this campaign by just emailing your story to us at Please mark your email Atos Story.”
Quote from FMAUK website “Department for Work & Pensions (DWP)
“Professor Aylward, on behalf of the DWP, reaffirmed that the DWP recognises fibromyalgia as a real and disabling condition, and not just something that is "all in the mind". Even though the cause of fibromyalgia remains unclear, the important factor when deciding benefit claims is the effect the condition has on the individual. Medical Services doctors who assess people on behalf of the DWP are trained in disability assessment medicine; and the DWP is developing a training website for GPs, to raise their understanding of this specialised field.”
Reminder of request for email friend
Can’t call it a ‘pen’ friend.  But if anyone would like to correspond by email with a fellow person with  fibro, please let me know. 
Details were in last week’s eNews. 11.08.06.doc
Reminder of FMS Rendezvous at Wiston Tea Rooms on 20th August
Whether or not you attend the Brighton, Horsham or Worthing Support Group meetings, if you live within reach of Wiston (between Steyning and Ashington, Wwest SUssex) you will be welcome. 
Rebecca Richmond says that meditation and hypnosis can help
Meditation and hypnosis both enable you to achieve a state of deep relaxation, which is an important part of a healthy life style.
More importantly, when you are deeply relaxed your negative inner critic shuts up and I used these deeply relaxed states to reprogram my thinking and behavior.  Read more-
Worthing Group’s August Newsletter
Co-cure/Listserve articles
1.      What's about overactive lifestyle in fibromyalgia and chronic fatigue
2.      The relationship between serum antioxidant vitamins, magnesium levels,
and clinical parameters in patients with primary fibromyalgia syndrome.
Fibromyalgia and Pregnancy
This week I had the following query:-  “I have a friend who has been diagnosed with fibromyalgia and is now 6 weeks pregnant, is there any information or advice you or anyone else in the group could pass on that would help her, she is in a lot of pain at the moment and I think worrying about what lies ahead, how to deal with the pain while pregnant, what will happen during labour etc”
I have found the following sites with info on the subject.
 If any of you can speak from experience on the matter, please let me know.  Thanks - Stella
Lupus and Fibromyalgia
Lupus and fibromyalgia may look similar on the surface, but in fact they are very different disorders. Unlike lupus, fibromyalgia is not an autoimmune disorder and does not cause any inflammation. It also does not interfere with organ function. However, people with fibromyalgia are often misdiagnosed with lupus.
The confusion between lupus and fibromyalgia may be due to the fact that many of their symptoms are so similar. Like fibromyalgia, lupus symptoms tend to come and go, and can take the form of sudden flare-ups. Like fibromyalgia, lupus is also associated with extreme fatigue, muscle pain, and circulatory disorders. In fact, up to 30% of lupus sufferers develop fibromyalgia syndrome after they have been diagnosed. However, it is very rare for fibromyalgia sufferers to develop lupus.
Here’s hoping things are going well for you.  Remember to pace your life; take that much needed exercise without overexerting; eat well and healthily; be creative. 
Until next week
Gentle fibro hugs

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.
Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.  I also include various awareness and local issues as well as general health considerations.  Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.

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