Health

Re: Fibromyalgia Awareness Day

lindseym — Wed, 21 Oct 2009 20:32:33 GMT

Unfortunately in a way, the research from the Whittemore Peterson Institute applies more to ME/CFS than Fibro and even then may only apply to a subset of people diagnosed with ME/CFS. Although patients with a diagnosis of Fibro were included in the latest research studies, the institute has noted that the numbers were very small and that it is possible that they had the retrovirus linked versio of ME/CFS as well as of instead of Fibro.

However, there is a lot of research done and ongoing about Fibro specifically and a lot is actually known about it. Getting effective treatment is the hard bit as specialist doctors are few and far between, treatment requires significant commitment from patients, specialist physio and massage are often needed and may not be availabke locally and, even in the UK, treatment can be expensive.

Re: Fibromyalgia Awareness Day

kilbaha01 — Wed, 21 Oct 2009 16:34:14 GMT

Hi there,

I'm in ireland too, and I just wanted to tell you that there is great news in the research front with fibro.

Have a look at www.wpinstitute.org as they have discovered a virus is responsible for fibro.

If they have a cause then the next thing is a cure. Have a look at the presidents mission statement on the site plus the Q and A in the research section. Also the newspaper articles recently published around the world when the news came out.

I'm a single mum too and have felt like death for the last ten years or more, this is the first time I have felt real hope, after lining the pockets of many many "healers' who said they could cure me.

Yes its very isolating, email back if you can.

All the best

Helen . Limerick

Re: Fibromyalgia Awareness Day

hunman — Sat, 09 May 2009 18:35:37 GMT

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.

Whether you have been diagnosed with fibromyalgia or suffer from its symptoms, or have a family member or friend with the disorder, this section is designed to provide you with a better understanding of this chronic pain disorder that affects millions of people worldwide.

http://www.addictionsearch.com/treatment_articles/article/naltrexone-and-its-multiple-uses_78.html

Re: Fibromyalgia Awareness Day

lindseym — Tue, 17 Feb 2009 07:19:15 GMT

How LDN would work with Fibro is likely to be different to other conditions. Fibro isn't autoimmune (and autoimmune conditions are linked to over-active immune systems, not under active ones) in the normal sense, but it does have low endorphin levels associated with it.

Re: Fibromyalgia Awareness Day

chelseadog — Mon, 16 Feb 2009 21:44:19 GMT

Thanks Ellie. I don't know if any of you are using Low Dose Naltrexone (LDN) but I've heard so many people have used this with success rate. Their next annual conference is being held in Europe (Glasgow, Scotland) and Dr Chris is registered to attend. www.glasgowldn2009.com

Low Dose Naltrexone (LDN) which a number of people are taking around the world with great success. LDN is a drug that is credited with helping those with HIV/AIDS, Cancer, MS, Fibromyalgia, Chron’s, Rheumatoid Arthritis, autoimmune diseases and central nervous system disorders by boosting the immune system.

As we all know, autoimmune diseases are a result of an under-active immune system by showing low beta-endorphin levels. Endorphins are what regulate the immune system. When you raise the endorphin level, disease progression starts to slow and can come to a complete halt in many. LDN raises endorphin levels.

Essentially, taking LDN 'tricks' the body into producing higher levels of endorphins - and the increase in endorphins helps our immune systems function better in numerous ways ... beginning with feeling better, then reducing inflammation, which in turn reduces cell damage and pain, etc, etc.

We have started a petition on the No 10 Downing Street website to get the Govt to fund trials for LDN. Please sign this http://petitions.number10.gov.uk/LowDNaltrexone

Many thanks, we need your support

Re: Fibromyalgia Awareness Day

lindseym — Thu, 12 Feb 2009 19:55:20 GMT

Yes, it's always May 12th.

Re: Fibromyalgia Awareness Day

chelseadog — Thu, 12 Feb 2009 15:22:57 GMT

I don't know if you are aware of the drug Low Dose Naltrexone (LDN) which a number of people are taking around the world with great success. LDN is a drug that is credited with helping those with HIV/AIDS, Cancer, MS, Fibromyalgia, Chron’s, Parkinson’s, Rheumatoid Arthritis, autoimmune diseases and central nervous system disorders by boosting the endorphins.

Autoimmune diseases are associated with a degraded immune system and low beta-endorphin levels. Endorphins are what regulate the immune system and repair systems. They also act to control tumour cells. When you raise the endorphin level, disease progression starts to slow and can come to a complete halt in many. LDN raises endorphin levels.

Re: Fibromyalgia Awareness Day

chelseadog — Thu, 12 Feb 2009 15:09:30 GMT

Can anybody tell me what day Fibromyalgia awareness falls on this year? Is it always 12th May?

Many thanks!

Chelsea

Re: Fibromyalgia Awareness Day

mags007 — Tue, 04 Nov 2008 14:45:22 GMT

I don't beleive I seen any comment about CRPS/RSD being "special". And I know exactly what caused my illness and NO I did not suffer from any other condition when I suffered my trauma, which has caused all of my illness. I now because of you, that this kind of trauma also causes fibro.

Re: Fibromyalgia Awareness Day

lindseym — Tue, 04 Nov 2008 06:35:17 GMT

Fibro often develops in people with another condition, possibly because of the physical stress that the first condition puts on a body. But I'm not sure I would call it a symptom....and even if you did, you could then say it was a possible symptom from Lupus, Rheumatoid Arthritis, Hypermobility Syndrome, etc, etc. CRPS/RSD wouldn't be special in that respect.

Re: Fibromyalgia Awareness Day

mags007 — Mon, 03 Nov 2008 19:15:27 GMT

I read your comment so I did a little research on the web. Fibromyalgia is actually a symptom of CRPS?RSD.

Re: Fibromyalgia Awareness Day

lindseym — Mon, 03 Nov 2008 07:48:08 GMT

CRPS/RSD is something that should be ruled out before a Fibro diagnosis is given...

Re: Fibromyalgia Awareness Day

mags007 — Sun, 02 Nov 2008 21:35:31 GMT

I'll guess that that report helped seeing as none has replied

Re: Fibromyalgia Awareness Day

mags007 — Sat, 18 Oct 2008 09:02:02 GMT

I have a condition called Complex Regional Pain Syndrome or CRPS as I normally call it, it sounds very similar to your condition as you describe it. maybe you would like to look at a website called the rsdfoundation you can easily find it using google theres an exellent item on there called the Clinical Practice Guidelines - Third Edition. My illness is the total body Syndrome caused by a serious electrical shock that went through my whole body in March 1998. I have other illnesses also including cancer, memory loss etc etc

I think that document may help you tremendously

Mags

Re: Fibromyalgia Awareness

jaynethepain — Fri, 12 Sep 2008 09:47:12 GMT

Hi Jayne,

We wrote to each other back in April on this forum re: Fibromyalgia. You may not get this message, and its a shame I havent got your personal email?

I live in Eastham Wirral and think you live on Wirral too? In April I had reached the end of my tether with joint pain, fatigue, depression etc. and luckily read a post from Nin (listed as Guaiernin). She may have written to you too. She introduced me to the book by Dr. Paul St. Amand "What Your Doctor May Not Have Told You about Fibromyalgia". I bought it that day from Borders at Cheshire Oaks and in May started the Guai Protocol. I am in no way cured, but feel so much better.

Just wanted you to be aware of the Guai Protocol (you prob. already are as there's loas of websites about it).

Hope you are coping,

Love Jayne