Let's talk about Fibromyalgia and Chronic Fatigue Syndrome awareness. It's this Wednesday, the 12th.

Do any of you ever feel that people don't take your illness seriously because you don't look sick?

Do you feel guilty for not looking sick and have a hard time relating to others with more obvious disabilities?

What do you know about FM/CFIDS Awareness Day?

I am learning more and more all the time. I know that I feel guilty for not looking sick and a little frustrated that others can't "SEE" my pain because it's there and I know it. There are times when it's really hard especially with my family and because I am a person who hates to say "NO!"

If you'd rather not post your replies in the forum, I understand. Drop me a line at [email]fibcfs@bellaonline.com.[/email] I'd love to hear from you.

Hi Deanna,
I agree with you completely about people not acknowledging invisible diseases.

I have been the object of scorn because my family cannot have empathy for symptoms they cannot see or relate to.

If you have a dire diagnosis such as a form of cancer, multiple sclerosis, etc. etc. you are granted empathy and understanding.

I find that many people believe that we are malingerers and I have limited my relationships because of that problem.

I wish I had ordered a T-shirt to wear for Wednesday - Fibro Awareness Day.

Val B.

Val,

I can understand the frustration. I feel it too. It hurts to not be believed. I know I suffer with this disease and have great respect for those who do too.

It's even tougher when the medical community can't seem to get a handle on it either. I almost feel like I am educating my doctor on the disease...(hey, maybe he'll start paying me :-)

Next year, we'll have a grand ole 'event' for Fibro/CFS Awareness Day here at http://www.bellaonline.com/site/FIBCFS.

I feel bad that I didn't know about this sooner. Otherwise, I would have done it this year.

Maybe, I'll give a t-shirt away!!!

Hello,

My sister suffered from Chronic Fatigue Syndrome and ME for about three years, and i was amazed at how much she changed because of it. Somedays she was in too much pain to get out of bed and she missed a lot of school.

She was young at the time (at high school) and the level of support from them was terrible. they thought she was afraid of school, and was using her illness as an excuse to 'bunk off'. They even accused my mom as using my sister for attention (i can't remeber what the medical term is - but it involves the mom pretending the child has an illness so that the mom gets attention)

Luckly she is now over the worst of it after finding a doctor who had previous exeperience in these things. With the doc on our side, we were able to resolve things with the school, who wanted my sis to see a child phycologist.

Although sis is now over the worst of it, the ordeal was very traumatic for her, and now suffers from depression.

Its about time that people were made aware of these illnesses, the sooner the better, so that other sufferers do not have to go through the disbelief, doubt and heartache that my sis had to go through.

Jumbo,

I am sorry to hear about your sister. The disease you were thinking of is Munchausen's Syndrome I believe.

I agree that we need to work harder to make people understand this disease. I appreciate your supportive post.

Hi I am new to this form, and have just found out that I have this. I am taking meds for it but it seems that it is not helping like it should. I am still in pain. Is this common for fb? I want to do things but being in pain all the time is not helping. I have taken a lot of tests and it has cost a lot of money to just find out that it is Fib. The one test that was taken was CRP which was up to 10.59 when it is suppose to only .3 I don't know what this means, but because she could not find anything else wrong she calls it fib. Do you have any answers for me? Thanks. Naomi

Have you tried MACA? Research seems to show it's quite valuable in treating fibromyalgia.

Also,This page has quite a bit of information on both fibromyalgia and CFS. There's also a list of resources (special groups, associations, etc.).

Teri

hi teri,

what is maca? i have had fm/cfs/ibs for ten years now. i have been on methadone for pain
for about the last 5 years. whenever i hear of
some different med for fm, my ears always perk
up. tia

God Bless,
kathy in texarkana, texas

I've tried answering your post several times, Kathy, but keep getting an error message. The link in my previous post has been edited to the correct fibromyalgia page.

Hopefully I won't get an error message this time!

Have a healthy day,

Teri

I've heard a little bit about MACA. It has a lot of phytochemcials with high concentrations of amino acids, and minerals including Zinc, Selenium, Magnesium and Iron, which have been known to be beneficial to Fibro patients.

However, I don't know if there are any interactions between & Methadone.

Does anyone else?

Hi I'm a newbie to this board and to fibro. I've only been diagnosed for about 2 years now and kat you just scared me thinking that one day I may have to take Methadone to control this pain -- I have trouble getting Vicodin from my present rheumo doc.

I have FM and i am on Mag malate, Ginko, Mobic, and Skelation (misspelled) and natural Progesterone cream, also a candita diet becuase if you have FM normally you have a system wide yeast infection. These things have helped me get a MAJOR amount of pain and exhastion under control.

Krispy & Tina Renee,

Hi and welcome to the Fibro board.

Krispy, I don't think everyone takes methadone. Fibro does seem to affect most of us differently. I only take mild NSAIDs (analgesics) for my pain and try supplements. Magnesium and Coral Calcium work wonders for me.

Tina Renee, you bring up an amazing point that I'm going to start another discussion thread about. It's the yeast & fibro connection. I think that being on an anti-yeast diet helps many of us with fibro. I'm trying one out and having a hard time sticking to it, but when I do, I feel worlds better.

WOW! I'm so glad y'all jumped into the conversation.