More Awareness for Fibro?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17463
   Posted 9/15/2017 6:52 AM (GMT -6)   
I just read that Lady Gaga had to pull out of her Rio gig because she is hospitalized with fibromyalgia. This should bring more awareness of this illness and how severe it can get. Maybe some of the doctors who think it's all in our heads will take notice, too!

/www.yahoo.com/news/brazilians-gaga-rock-rio-festival-170458057.html

And, Selena's going through a kidney transplant because of her lupus will bring more awareness to this disease also. I'm so sorry these women suffer from these illnesses but am so happy they are coming forward and letting people know they are dealing with things like this. It should help all of us and make doctors more aware.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2057
   Posted 9/15/2017 8:05 AM (GMT -6)   
Now that we know she has the disease, it would be nice to know what help she gets for it..

It definitely is still a misunderstood disease.

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5948
   Posted 9/15/2017 10:15 AM (GMT -6)   
Yes, it's too bad they're suffering, but I agree - it can't hurt for the world to see people who are famous, successful and dynamic being brought to their knees by conditions WE already know are serious.

Truth to tell, I've often looked online for "representatives" with Fibro...a surprising number of people still just do not get it!

Debbie
Moderator, Fibromyalgia Forum

Fibromyalgia, degenerative disc disease, discectomy L4-L5 - (w/lots of Sciatic Nerve damage), frozen shoulder, Hashimoto's Thyroiditis, IBS, migraine, dizziness (mostly from visual stimuli), elevated liver enzymes, tachycardia, hearing loss (probably Menieres).

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1348
   Posted 9/17/2017 11:57 PM (GMT -6)   
I hope SELENA recovers well.She was on chemo too for a while.

We cannot compare our health care to the celebrities as they have more resources via money to faster and better care.

Sorry to state this fact but its true.

Healthcare is a profit making business ,not non-profit.......remember that.

ASK ME AS ONE WHO HAS no insurance.

Its very difficult to survive .
Cilly

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2641
   Posted 9/18/2017 5:33 AM (GMT -6)   
Cilly: That has to be so tough, not having insurance!

Have you checked into alternative plans? I know there are a few, including CMF CURO, Samaritan Ministries, and Medi-Share (some of these may even be related(??)). I know little about any of them and really don't know how they work--just heard them advertise on the radio, and didn't pay close attention, as I currently have insurance. Just heard these are alternatives to "regular" insurance plans.

I think most are religious-based, but I'm not sure how that works, either. Sorry, this probably isn't very helpful, but maybe you could check them out.
"Pray, hope, and don't worry."

St. Padre Pio

Post Edited (Luvzminis) : 9/18/2017 6:25:44 AM (GMT-6)


malman
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/20/2017 3:15 PM (GMT -6)   
Hi all,
I am new here and patently interested in fibromyalgia which I have for some years now.
I am 75 and have more than 50 of those involved with commercial animal production,and especially nutrition.
I will say here that experience is the teacher of ALL things!
My experience is that experts know more and more about less and less,and they still have no idea what causes this problem.
Experience from my early days led me to focus on the basics and with a wide view,and I have always found that nutrition is by far the primary cause of health problems.I have solved and prevented many problems with animals by getting to the bottom line first and joining the dots so to speak.I had my own feed mill so I could make adjustments and see the results.(large commercial numbers).
Animals are sooo important -after all we test many new products on animals before they are used for human consumption.
Now-re fibro-correct me if I am wrong,but this problem was unheard of some years ago but it reared its head some 10-15 years ago and appears to me to be escalating in epidemic proportion.
What has happened in this time frame?That is the question.
My view is-it is coffee.
I was alerted to this when people coming back to Australia after holiday in the US,nearly always commented on how bad the coffee was.I researched why the would be saying that,and with the way my mind is programmed I looked at the bottom line-the coffee.
Coffee is nearly always blended-Arabica and Robusta.The latter is of great concern for me.It has a higher caffeine content and is pungent and bitter.It is cheaper than Arabica which is a big flag for me with the corporate world we have now.
By far the biggest world production comes from Vietnam.It can grow at lower altitude/harsher conditions etc.etc.
I believe there is a link here with the agent orange that was widely used many years ago.Agent orange has a long half life from what I gather and it passes on in the food chain.Study this aspect and see how many children have and are still being affected with birth and health problems.Born many years after the conflict.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17463
   Posted 9/20/2017 5:35 PM (GMT -6)   
Hi, Malman, and welcome! Fibromyalgia has been around for centuries. They believe Florence Nightingale suffered from fibro. I was diagnosed 30 years ago with fibrositis because they thought at that time the pain was caused by inflammation...hence the "itis" ending. They have since found out that fibro is not an inflammatory illness...hence the "myalgia" ending. Doctors now believe it is a neurological issue that is affecting our nerves and how we perceive pain.

Here is a brief link about the history of Fibromyalgia.

/fibromyalgianewstoday.com/2017/04/10/fibromyalgia-through-history/

I also do not drink coffee. I can't stand the taste of it or anything that is coffee flavored. I'm strictly a tea drinker.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot about this illness there.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

puppylover
Veteran Member


Date Joined Feb 2009
Total Posts : 843
   Posted 9/20/2017 9:14 PM (GMT -6)   
I'm 71 and have had fibro since I was a young child. I think they have just finally started to recognize the problem is so great. I could not even begin to list the doctors/treatments I have had over the years for my mysterious pains and other symptoms.

Use to be a big coffee drinker but not anymore.

Hopefully someday they can solve the mystery.
Puppylover
And on the eighth day God created Golden Retrievers.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2057
   Posted 9/20/2017 11:59 PM (GMT -6)   
I have a genetic form, my mother and an older sister have had it, and 1 daughter.

This goes back a long ways.. so coffee cannot be the only culpret .

Lj

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/25/2017 4:33 PM (GMT -6)   
I don't buy into the theory about processing pain differently. I've never been overly sensitive to pain and, in fact, gave birth to three children, all naturally. I've always considered myself more pain tolerant than average, not less, and I've gotten that impression from various medical professionals (ob/gyn doctors, dentists, etc.) who have been somewhat amazed by my pain tolerance levels. So when I'm told that my problem is because I don't tolerate pain well, I'm more than skeptical.

On the other hand, I am more inclined to buy into the auto-immune theory of this disease. It seems like most of the people who have it, myself included, are prone to auto-immune diseases and have more than one.

Oh, and incidentally, I'm not a coffee drinker and never have been. But I do believe that nutrition probably plays a part, and I do tend to flare more on a carb heavy diet. I started eating low-carb when I was diagnosed with LADA diabetes in 2014, and it made a big difference in my symptoms. But lately, I'm getting more flares even while still eating better.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17463
   Posted 9/25/2017 7:55 PM (GMT -6)   
Hi, ReeMe, and welcome! I have been more tolerant of pain too...like labor pains, etc. I had my colon removed and was Christmas shopping at the mall for six hours three days after leaving the hospital. I still had 89 staples in me! But yet I cannot tolerate a strong hug. If my kids would playfully swat me, it felt like I was slugged and I thought I would get a bruise but never did. Little bumps can hurt like the dickens to me so the processing/perception of pain does make sense to me.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/25/2017 10:26 PM (GMT -6)   
Hi Sherrine, and thanks! I see what you're saying, but do you see that being exclusionary of auto-immune, or could it be an auto-immune condition that causes faulty pain processing? You clearly are suffering from a number of auto-immune diseases yourself (I can see you have a lot to deal with!), so doesn't it seem likely that this is also auto-immune?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17463
   Posted 9/26/2017 7:10 AM (GMT -6)   
Fibromyalgia s not an inflammatory illness and it's not autoimmune either. Autoimmune of lln sees are inflammatory.

I did a post about this a couple of days ago in the below thread. It's the seventh post in the thread. Hope this helps. Also, read Fibro 101...the first thread on the forum. There is a wealth of. Formation on this illness too.

www.healingwell.com/community/default.aspx?f=24&m=3915892

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/26/2017 12:33 PM (GMT -6)   
Thank you, Sherrine, for the various links. I actually looked through your links even before I started posting, and I have read a lot of this same kind of information in my own online research, but I guess what I'm asking is why we should necessarily accept the current medical opinion and dismiss the newer research. I'm doing that with the assumption that people here must be familiar with this newer research, but if not, I'm talking about this. /www.fmcpaware.org/fm-a-real-medical-disease.html From that link, the research revealed "the discovery of a major set of differences in cell-mediated immunity in the fibromyalgia group versus the healthy patients. And this discovery was opposite to what was anticipated. Specifically, while fibromyalgia patients are often considered to be 'hyper/overactive responders,' we identified that the fibromyalgia patients had a depressed immune system and, therefore, were more susceptible." And this, "This disorder relates to the production of protein molecules called cytokines by a certain type of white blood cell."

This is where the new(ish) blood test comes in, checking these cytokines for this specific pattern. From what I've gathered, some have objected to the test on the basis that some other conditions also affect cytokine patterns, such as lupus and RA, but according to these researchers, the specific pattern of cytokine production differs in fibromyalgia which is why they've been able to get such startlingly accurate diagnostic results.

The newer research actually categorizes fibromyalgia as an "immunological disorder" and not an auto-immune disorder, which I guess is not really the same thing. I'm trying to figure out if auto-immune disorders are a sub-category of immunological disorders, but I don't know whether they are or not. That's not clear to me in anything I've found yet. But I'm still kind of expecting them to eventually classify it as auto-immune. Just my gut feeling, though.

I don't know if these musings are appropriate here or if people even care about this kind of thing when they just want some relief, and whatever promise this new research might hold, if any, won't be available for a long time to come. But it's interesting to me. And I thought this might be a place to find others who are also interested.

WEric
New Member


Date Joined Jul 2017
Total Posts : 5
   Posted 9/26/2017 10:03 PM (GMT -6)   
Thanks for posting ReeMe...definitely interesting study!

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2057
   Posted 9/26/2017 11:48 PM (GMT -6)   
Sure new studies are always interesting..

I think too we need to keep an open mind, since there s a lot not understood about this..

Lj

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/27/2017 9:50 PM (GMT -6)   
Yes, I agree--and there's a lot left to learn. That's why I decided to participate in the genome research when my blood test confirmed my diagnosis. Obviously I don't know if this study will lead to anything, but at least they're doing research. Some people have complained about the high cost of the test (and it is unreasonably high without insurance coverage) but presumably, the revenue from the test will fund further research.

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2057
   Posted 9/27/2017 10:03 PM (GMT -6)   
Well there s no cure , but many good ways we can get some relief and carry on..

Right now we are wedged between maria off the coast and another system coming from the west..so its been a tough day..

But ha ha, i made it..and am laying on my acupressure pad , which helps,me relax for sleep

ReeMe
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/28/2017 9:59 AM (GMT -6)   
No cure yet, but that's the goal of this genome research. Frankly, I'm not that hopeful, but who knows? Maybe there will be a cure someday.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, October 24, 2017 2:13 AM (GMT -6)
There are a total of 2,886,452 posts in 316,713 threads.
View Active Threads


Who's Online
This forum has 157811 registered members. Please welcome our newest member, John Pipe.
655 Guest(s), 5 Registered Member(s) are currently online.  Details
07kr5, purplereading, seemamalik01, Loucath, Jendino


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer