Forum Rules

[Cort]

Number of Forum Accounts You Can Have

• That would be one .

Identifying Yourself

• Caregivers - only Caregivers are allowed in the Caregivers Forum. Please give them the privacy they need to be as open as possible in their discussions.
• People With A Possible Financial Interest - We recognize the dangers of self-promotion in as wide open a field as ME/CFS and FM treatment is, but we also want people on the Forums to have access to as many legitimate treatment possibilities as possible so, for now, we're allow people with a possible financial interest in this field onto the Forums so long as they identify themselves as product representatives and/or practicing health practitioners and don’t make a pain of themselves promoting their products. They are allowed to put a link in their signature to their product/practice that simply states what it is without touting its benefits (see signatures below). We’ll see how it goes.

Signatures

• No Slam Policy - Signatures that slam or detract from ME/CFS or FM or other organizations or that involve personal attacks are not allowed. Signatures that promote organizations, ME/CFS or FM initiatives or contests are.
• Product Reps and Health Practitioners - are allowed to identify their products and areas of employment in their signature if they do so without touting any benefits. Stating that “X” product relieves pain in Fibromyalgia, for instance, is not allowed. Putting the name of a product with a link to a website is. Stating that your health coaching practice improves the health of ME/CFS patients is not allowed. Stating that you are a health coach for FM and ME/CFS is and providing a link to your website is.

 

[Evergreen]

I am the parent of a daughter who has been looking for answers for somewhere between one and two years. She has been diagnosed with fibromyalgia and cfs/me, and is working with a Canadian doctor now to possibly exclude other conditions. It's the same old story... running to doctors in an attempt to get a diagnosis for her deteriorating health and decreasing ability to live a normal life. Nothing prepared me for how hard it is to see this happen, and our family is not immune to tough times; we've weathered experiences with drug addiction, alcoholism, a heart attack, a cancer diagnosis, an affair, divorce, and a triple bypass. These were do - able to cope with, with time and discipline and patience. How do other family members of loved sufferers cope and support their loved ones? Because this is a situation that seems to have no clear path of strategies! Many days I want to march up the hospital steps, pitch a tent and say, "Someone needs to be accountable! I'm not going anywhere till that happens!"

 

[ScottTriGuy]

Hi,
I'm in Toronto - I've found support through the Naturopath Medicine College on Sheppard Ave: http://www.ccnm.edu/

One of their doctors, Dr. McCreadle (If I recall correctly), is a specialist in M.E. treatment - she's having me do an organic acid urine test, I'm getting 23andme genetic for the MTHFR gene - I've had success with laser therapy on my brain stem (I have a home unit I use daily from Dr Kahn), and daily B12 injections and methylfolate. I've been trending better for a couple of months now and look forward to tweaking my treatment for even better results. Let me know if you'd like more details later as I'm off to work now.

 

[Cort]

I am the parent of a daughter who has been looking for answers for somewhere between one and two years. She has been diagnosed with fibromyalgia and cfs/me, and is working with a Canadian doctor now to possibly exclude other conditions. It's the same old story... running to doctors in an attempt to get a diagnosis for her deteriorating health and decreasing ability to live a normal life. Nothing prepared me for how hard it is to see this happen, and our family is not immune to tough times; we've weathered experiences with drug addiction, alcoholism, a heart attack, a cancer diagnosis, an affair, divorce, and a triple bypass. These were do - able to cope with, with time and discipline and patience. How do other family members of loved sufferers cope and support their loved ones? Because this is a situation that seems to have no clear path of strategies! Many days I want to march up the hospital steps, pitch a tent and say, "Someone needs to be accountable! I'm not going anywhere till that happens!"

I'm repeating this post in case you didn't get it. The original is right above this post...

Hi,
I'm in Toronto - I've found support through the Naturopath Medicine College on Sheppard Ave: http://www.ccnm.edu/

One of their doctors, Dr. McCreadle (If I recall correctly), is a specialist in M.E. treatment - she's having me do an organic acid urine test, I'm getting 23andme genetic for the MTHFR gene - I've had success with laser therapy on my brain stem (I have a home unit I use daily from Dr Kahn), and daily B12 injections and methylfolate. I've been trending better for a couple of months now and look forward to tweaking my treatment for even better results. Let me know if you'd like more details later as I'm off to work now.

 

[Kathy Carre]

I have had fibromyalgia for more than 30 years. I face a lack of understanding pretty much everyday. Not that I expect people who don’t have this illness to understand what it is like, it is just that I would like to see the day that everyone who has it...be able to say...”I have fibromyalgia” without the fear of not being believed. My family doctor is empathetic and believes me. I am one of the lucky ones. But I have however been down the road where I don’t dare tell anyone in my medical management that I have fibromyalgia....for fear of not being taken seriously. To this day, if I had to go to an emergency room...I would be very hesitant to disclose that i have fibromyalgia...even though my medication that I am on would spell it out for them. I know what often happens in ER’s and clinics everywhere. Someone presents with fibromyalgia and they are the laughing stock. Do you know how many people who work in the medical field suffer in silence because they know these negative attitudes exist among their peers?

I do my very best to live a full happy healthy life. I help myself by swimming, by doing what I love to do (photography for one) and by staying connected to others. My husband and family are amazing. I have friends who accept my situation for what it is. But sadly there are those who are not able to believe in this invisible illness. It is palpable when you are in the presence of those who just don’t believe in it and think you are either looking for sympathy or something.
I am always seeking out credible researchers and their studies. I have started a Facebook page to try and be a good advocate. “Speaking the truth about Fibromyalgia” I have posted credible research videos as well as ways to help ourselves cope. I do all of this at the risk of others judgement; like I am “going overboard” etc.

I am trying to get a popular Canadian television show to do a segment on fibromyalgia...by bringing in a respected researcher and possibly patients who know what it is to live with this. In other words...I am finally ‘putting myself out there’ by coming out of the fibromyalgia closet; knowing full well that this won’t be well received/respected by everyone around me.

Do I still feel the stigma?

YUP. I would like to say that I didn’t...but I do. I have had doctors in the past say “there is nothing wrong with you” all the while my body screaming that there is something very wrong. This kind of pain cannot possibly be ‘normal’ And this kind of exhaustion? How can that be ‘normal?’ Thankfully, I have had the opposite response and very much taken seriously and treated accordingly. But it’s still very hard living with an ‘invisible illness’ with the knowing that there are so many people around you who simply don’t believe what you are going through. I guess if I was being honest...I still sometimes feel embarrassed that I have this. I am working on that. On good days...I don’t care what others think. But there are those days that this is a very lonely illness. I refuse to isolate myself...but I know that many people live in that isolation every single day.

Kathy

 

[lizpwc]

I am the parent of a daughter who has been looking for answers for somewhere between one and two years. She has been diagnosed with fibromyalgia and cfs/me, and is working with a Canadian doctor now to possibly exclude other conditions. It's the same old story... running to doctors in an attempt to get a diagnosis for her deteriorating health and decreasing ability to live a normal life. Nothing prepared me for how hard it is to see this happen, and our family is not immune to tough times; we've weathered experiences with drug addiction, alcoholism, a heart attack, a cancer diagnosis, an affair, divorce, and a triple bypass. These were do - able to cope with, with time and discipline and patience. How do other family members of loved sufferers cope and support their loved ones? Because this is a situation that seems to have no clear path of strategies! Many days I want to march up the hospital steps, pitch a tent and say, "Someone needs to be accountable! I'm not going anywhere till that happens!"

I truely believe nutritional cleansing is really beneficial It has really helped me after being 'couch potatoe like" for 30 years. If you're interested in what I did please pm me on FaceBook (Merry Anderson).