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05/03/2012 04:09 AM

Getting other to understand fibro when they can't

BHartford
BHartford  
Posts: 123
Member

Several members have brought to my attention that they thought it would be good to start a discussion on how to get other people to understand an illness such as fibromyalgia. We all know that it is real, we feel it every day, and see how it impacts our lives. How do you get other people to understand your fibro when they can't see it and some doctors do not even believe it is a real condition? Ermm
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05/10/2012 12:09 PM
krystle2
 
Posts: 564
Member

I did believe in fibro (That was my diagnosis at first) Then my leg went numb.

It was lyme disease. Many people are going misdiagnosed or undiagnosed. This

is a growing disease.


05/10/2012 05:23 PM
BHartford
BHartford  
Posts: 123
Member

Krystle, do you have any information on Lyme Disease you could share with us?

05/11/2012 04:44 AM
krystle2
 
Posts: 564
Member

I do have info to share. Many doctors are ignorant to it and do not test properly.

Testing is not always 100% accurate. I tested positive on western blot 2 bands, which

is not considered positive for CDC (centers for disease control) I DO HAVE LYME.

So, if many doctors are not seeing 5 out of the 10 bands positive they are telling

their patients they do not have lyme. That is how people fall thru the cracks and

continue to suffer. There is a lab in CA (Igenex) which specializes in tickborne

testing. That is where I had my kids tested thru. THEY HAVE LYME. My husband

has it in his blood but not enough symptoms to treat.

It is treated with antibiotics.

Here are some sites:

www.underourskin.com (rent documentary thru netflix or hulu.com)

www.truthaboutlymedisease.com

www.canlyme.com (click symptoms button, print it out, highlight ailments)

www.ilads.org (doctors who know what they are talking about and how to treat)

I had 7 doctors. None of them tested me properly for this disease. If it weren't

for a family member telling me what test to get, I could very well still be suffering.

There are also co-infections that come with lyme. I was CLINICALLY diagnosed for

babesia (symptoms- hot flashes and nightsweats-- not menopause. Im 43)

Here are co's you may want to google them with the word symptoms: babesia, bartonella,

ehrlicchia, mycoplasma. You have to be your own advocate or may never be diagnosed properly.

God bless. If anyone needs anything- private message me or post to the lyme forum.


05/12/2012 11:55 AM
STRENUBA
 
Posts: 144
Member

It has been my experience that if you don't have FMS it cannot be explained or conferred to someone who does not have it. Sorry, but that is what I have encountered.

Bryan


05/13/2012 06:44 AM
krystle2
 
Posts: 564
Member

I was told that I had fibro, and as many other people come to find out, it is

lyme disease. I just wanted to share info people many are going misdiagnosed.

I have turned the corner since treating with antibiotics.

I do know what it feels like to suffer. FEELING BETTER! Not looking to

make folks angry- just to help.

Knowledge is power with lyme. I had 7 different doctors who never tested me for this disease. I am sure there are millions more folks that have had test after test to

get a SYNDROME diagnosis


05/16/2012 04:25 AM
kildare56
kildare56  
Posts: 4147
VIP Member
I'm an Advocate

I should think if you live in an area prone to the specific type of tick, then testing would be appropriate. If not, you are probably wasting your money. It's like testing for Malaria in the Arctic. I have no issue with testing for Lyme if you wish. I simply disagree with taking it to the point that "I just wanted to share info people many are going misdiagnosed." Without that sentence, I tend to agree that it's a harmless test. That one statement however, is a bit like "crying fie in a crowded theater. Panic based terminology tends to do more harm than good. Areas prone to Lyme are easily found on the web.

05/16/2012 02:40 PM
Annelle
Annelle  
Posts: 193
Member

So, to get back on topic....how to get people to understand. I think first you have to ask yourself how important this person is to you? Do you really care if they care? You can't always inform everyone, but the people who love you in your life will listen if you sincerley ask them to understand.

With a couple of girlfriends I had to stop the conversation and say "I'm really sick!" I'm not just getting older, I'm not experiencing daily aches and pains. Stop brushing me off. They listened. But I did also stop talking about how I felt every time. To me the important thing was that they understood that I was ill. Now it's up to them to care how I'm doing. And they do care even if they don't ask every time.

With my boyfriend I've tried to get him to read some of the medical journal reports that I get from my Fibro journal. But he thinks he knows everything about Fibro. He doesn't. But he tries to be sympathetic. Smile Sometimes it's just about the other person caring even if they'll never truly understand.

Annelle


05/17/2012 12:03 PM
STRENUBA
 
Posts: 144
Member

A very good point Annelle. The people that really do care about you will be there for you.

Bryan


09/24/2012 12:27 PM
MAH1995
 
Posts: 24
Member

Im glad that im not the only person struggling to explain it to people, its bad enough explaining it to adults but fellow teenagers are a nightmare! I just take my time with it and i only tell people what they need to know and if its a lot i make sure that i let them ask as many questions as possible. And make sure they know that they can ask questions so things dont get akward. If people dont believe me i move on and dont bother fighting a losing battle. Some people just wont change their mind Smile
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