Fibromyalgia - Helping People Understand It's Real

Are you by any chance on Depo-provera? I was on it when I developed fibromyalgia, and when I got off it, the fibromyalgia went away.

My mil has fibro, along with other disorders. It also weakens the immune system. It is very closely related to ms. Since she 'looks' healthy, people assume she is, but she is a very sick woman. She does chiropractic care, major natural supplements and dietary changes, detoxifies, she even does blood transfusions and has had several bladder surgeries from fibro complications and it helps, but there really isn't any cure. All you can do is stop trying to explain to people and take care of yourself. Avoid overworking yourself to avoid getting flares. Fibro has a very broad range of symptoms, which is why many Drs and people still don't understand it.

My dd has at least 6 diagnoses, one of which is Chronic Fatigue Syndrome, and none of which are common or understood or visible. Several of them are quite serious and she is in pain every day.

Check out the website www.butyoudontlooksick.com and read The Spoon Theory. I realize it's not about Fibromyalgia specifically, but I think it applies to anyone with an illness that is not well understood and causes constant pain or fatigue.

Also, this is a good site:

http://www.arthritistoday.org/community/expert-q--a/fibro...

I'm glad you're getting help and have a rheumatologist.

I have 2 pinched nerves and waiting to see a specialist in Jan. It makes me walk slowly and with a limp...not to mention that every step I take is painful...guess you can see it in my face. I have had nothing but kind people opening doors for me or asking if they can carry something for me or have my car loaded by an employee. While shopping(I only go one store in a given day) at the Nautica Outlet store the other day...the employee approached me and asked if she could take the clothes I was holding while shopping...she said it looked like I was having a hard time. Also at checkout...the manager came over and told the sales clerk to give me a 15% discount. Didn't even think anybody ever noticed me...but us Americans are some wonderful caring people. I only wish you had the same response...but I have never even told anyone what my ailment is.

I'm sorry for your diagnosis. I have had fibromyalgia for 10 years, that's when I tied the symptoms together and sought help so actually longer.

As far as the eye rolls and looks, ignore them. You know what you go through, it doesn't matter that they do or choose to remain ignorant of what it is. I fell down a flight of stairs about 14 years ago which my rheumatologist said probably set it off full force, but I had symptoms ever since i was in my teens. I have been dealing with it so long already that my family and friends SHOULD understand, but not all of them do or are sympathetic. I offer information when given the opportunity, but frequently deal with comments about what I should do or eat to get over it or hear the latest "my friend had it and she did this and doesn't have it anymore..." and can't count on everyone's support so I have learned to let it go. And when someone says, "But you look fine!" (Or "great," or "like there's nothing wrong with you," etc.) just respond, "That's one of the problems with having this, I look OK, but feel lousy/awful/ terrible/horrible/miserable on the inside." ; ) Of course we have our "good" days, and let them know your symptoms wax and wane.

Do concentrate on working with your doctors, physical therapists, nutritionists, etc., and paying attention to your body to learning what triggers your flares to ensure that you feel as good as possible.

Here are some sites that I hope will help you educate your friends and family and to get the support you need:
http://shadowsoffibromyalgia.wordpress.com/2010/07/28/how...
http://www.fibrotogether.com/fibromyalgia-friends-family....
www.facebook.com/Fibro360
http://www.fms-help.com/spouse.htm
http://www.arthritistoday.org/community/expert-q--a/fibro...
http://www.livestrong.com/article/70350-explain-fibromyal...
This one is for you:
http://fibro360.com/

God bless and gentle {hugs}

I believe you and know the pain is real. People can be ignorant and infuriating. I would try a fibro support group in real life.

M., I would not bother to try to tell people your diagnosis. Those who don't believe that fibromyalgia is real don't want to believe it's real. I would worry less about educating others and more about educating yourself.

Mimi has good advice. Try your best to detox your system. Study your diet and make some real lasting changes. I would also see if there is a good acupuncturist in your area.

Good luck,
Dawn

Don't try to convince anyone of anything. Just take care of yourself. Do whatever it takes to have as many good days as possible. Try to keep yourself on an even keel. See an acupuncturist to keep your energy and stamina up. It is very helpful to get a foot massage whenever you can.

I think it is just that people are becoming increasingly ignorant. We have been living with many auto-immune issues that are finally getting attention. People are finally discovering that they don't always feel good, are tired or are in pain -- and want to feel better so they can enjoy life.

Don't go out of your way to explain anything if you can. If you feel comfortable around others and they ask then go ahead. I hope you start to feel better now that you have a diagnosis. Also, if you can find a support group with others like you, that can totally help.

This is NOT in your head and I am so sorry to hear about this. I have several people I know that used to live with this. There is help out there where you can get rid of it through natural means and not use drugs. I have friends with fibromyalgia that uses Shaklee to maintain it and they have no pain as long as they keep their vitamins up. Also, 80% of disease is caused by emotional stress. I know because all my diseases I had was caused by emotional stress and once I got rid of the emotional problems causing this I had no pain or sickness and am healthy at 61 whereas since I was 12 I was sick until about 6 years ago. Too bad I didn't know this and could have averted disease and money spent on sickness when I could have had health all these years and been more of a mother and wife to my family.

If you are interested in checking this out go to: www.nutritionandhealthnow.com
Although my mother did not have fibromyalgia she did have osteo and rheumatoid arthritis and got rid of that through Shaklee. She got off 3 high powered drugs and only used nutrition to have health. The doctor was wrong - she wasn't in a wheelchair in 5 years (age 46 she was told this) but she did go back and get her doctorate's in nutrition after her diagnosis and getting well at age 60.

N.

Hi M..

It's real. The reason people roll their eyes is because so many people say "I've got Fibromyalgia."...along with the fact that some doctors just tag that diagnosis when they can't figure anything else out. I also believe many people self diagnosis....

I do know that it can be overcome. I have seen it. I, along with NDs, believe it's an overabundance of toxicities in your system that makes your immune system weak or go haywire. After you're sure this is your diagnosis, I would see a Naturopathic physician and go from there. Chiropractic care also helps. Detoxing your home as well.

I do not believe it is all in your head!

God bless,
M.