what did you do when you found out you had fibromyalgia?

[cmetryme]

such good answers folks!

but im looking for what did you put in the search engine to learn about fibromyalgia?
how did you make your family understand what you are going through?

did it help you to spend many hours of doing research that you just didnt understand?

what are you doing now that you have it? what did you change or try to do to cope?

im trying to make this as easy as possible. your answers help us all there.

keep posting and learning. you key to reduced pain is knowledge.

knowing what your body is doing is very helpful.

thanks to all that have replied. let all help each other here. we are your support group.

 

[DK_engineer]

I did a lot of searches for "fibromyalgia + (whatever symptom was on my mind)" or "fibromyalgia + (whatever activity I wanted to still be able to do)" or "fibromyalgia + (whatever food I thought maybe I should or should not eat)"

I also looked for fibromyalgia forums and blogs.

 

[cmetryme]

wtg dk
thats what im looking for.
what goes through your mind when you sit down at the computer and think i have fibromyalgia. now what do i enter to learn?

 

[LemonMoon]

hello fellow sufferers,

well i am still learning what fibromyalgia means and is. from reading a lot of posts on here, it seems to be so different for so many of us. its hard for me to wrap my head around all of this and be included in this group.

I was diagnosed with CFS in 1997 and slowly got better and i have been well for many years now until maybe the last year or two.

First i would have a episode where i felt very sick and weak, achy,headache, and it would last for a few days, i would lay around and wait to feel better again. Now the episodes are pretty much all the time which is very alarming. and that is when i went to my doctor and started to research on the internet and find out what was wrong with me. first thought i might have lupus or something like that as all of these auto immune illnesses are quite similar. My doc ran lots of tests and ruled out everything but fibro.

And Voila! here i am! looking for advice, inspiration, just knowing that i am not alone with this, and glad i found this forum where i can come and read up on whats going on with others that are struggling with this nasty illness. i am still having trouble thinking that i really really have this. i am hoping that if i start really looking after my health and diet better, it might keep my feeling like sh*t easier to deal with. i tried cymbalta, but it gave me diarrhea and other G.I. upsets so i stopped taking it. my doc wants to try me on gabapentin so i guess i will see if it helps me. not so sure i wanna take it as i have heard such mixed side effects from it. i try and keep my drug taking down to a minimum, as i think there are side effects to all of these.

I am 70 now and no spring chicken, but i still want to live my senior years in some decent degree of health. I see many seniors around my building that get along just fine and do things like ride their bikes every day, garden, take walks and generally have no health problems and are older than me.

Soon as i got my diagnosis, i told my son, hes 50 and very sick too with M.S. so i am basically alone and on my own with this.

I appreciate the senior members here that are so willing to share with all us.

 

[cmetryme]

LemonMoon,

First i'd like to say you are no longer alone in this. you have us! rest easy.

You said My doc ran lots of tests and ruled out everything but fibro.

there is a fibro tender points test that you can find online.

Read my post under general discussions called what is fibromyalgia and another one called starting a daily log book and why it helps.
they explain fibro in plain easy terms you can understand.

You said i am still having trouble thinking that i really really have this.
you have to except that you have it before you will get reduced pain levels.

You said I see many seniors around my building that get along just fine and do things like ride their bikes every day, garden, take walks and generally have no health problems and are older than me.

You can do those things if you pace your self. try talking to them and ask if they have fibro. you will find many that do and you dont even know it.

You can also get with the activities director and set up a support group for fibro. have a meeting once a month. learn and share with each other.
you have a supportive group of folks right there. you are not alone. they are right outside you door.

if you need help with starting the group and how to run the meeting please advise me and i will help you.

first friend me and then send me a private message.

As a senior member i thank you for telling us we are helping. sometimes we need to hear that.

big hugs and may you have some reduced pains ahead of you.

 

[Zolisindigo]

Hi! Very glad to be here! Want to share my story!
I was diagnosed fibro 3 years ago(I am 28 years old now)and later bipolar disorder. As my doc told me there is a real connection between these two illnesses. Both of them depends on the biological changes in our brain cause of possible stress, depression and herpes attacks. I used to suffer from herpes very often. It was a real health problem for me! There was also stress for a long period of time.
When I first realized that something wrong with my body? When pain was in all trigger points. Of course, strong neuropathy is the result of herpes. But that kind of pain was constantly with me. Also severe migraines started to attack.I felt depressed cause of daily pain and insomnia. Then I tried reflexology, massage, yoga-alternative methods. They didn't help, I found very good neurologist and he told me that I have fibromyalgia. After that rheumatologist told the same.
Now I visit psychiatrist once a week, cognitive therapy helps to cope with my life changes. I drink Depakine(daily)-300 Mg, Tizanidine-2mg(daily) and Lyrica(but not regurlaly-75mg,only when it is very difficult to stay in pain). Drink Omega 3, vitamins D,B 12, B6.Try to walk every day,as it helps to focus on good thoughts and brings some relief. Meditate before go to sleep and sleep for 9 hours.
Everything may influence on these pains, weather,stress,difficult situations,unbalanced physical activity, bad night. My relatives help me a lot,they totally accept me as I am, I thank God for their acceptance and love. I have read many books articles about fibro, talked with many doctors,so I hope my own experience may help someone. I also will be glad to help with advice and support! Thank you,guys! Be strong!
Hugs!

 

[cmetryme]

thanks for telling us what you have done. there is a post i believe that DK eneginer posted about wanting some books on fibro that he can read.
please help him if you can. you may have to private msg him to give names of books not sure if that is allowed here. thanks for helping!

 

[DK_engineer]

Thanks Cmetryme

 

[cmetryme]

if its helping im here for you and anyone that comes here for answers.

folks please reply to my questions at it will help me and the others.

 

[cmetryme]

trying to move this up front

 

[cmetryme]

come on folks tell us what you did. answer the questions when you have read this post

 

[Getemgirl]

I'm a newbie here and was finally able to get diagnosed by a rheumatologist in June. I thought I had arthritis which I have watched my mom suffer from for 40 years. It was a tremendous relief actually to know that I did not have a degenerative disease! I try to hold that thought when I am in pain and remember that it is only pain and I can compartmentalize it. Usually the busier I am the better to ignore it, but the minute I sit down, wow. I am still working, but may need to consider asking for accommodations. Especially for those days when the brain fog is bad. Or when I'm expected to work for 12 hours. If I can figure out how to sit off and on throughout the day, it's better. On the weekends I'm totally down just saving up for the week. I have learned to do most of my cooking on the weekend so I have food for the week. Otherwise I'm too tired to prepare anything when I get home. Friday's are just killer as I am so tired and feeling more pain. Mostly I just plough through it. Try to ignore it.

I was diagnosed with IBS about 4 years ago, so I'm already eating pretty healthy. (I read that many people with fibromyalgia also have IBS which is a brain gut issue.) Maybe that is why I'm at a manageable level of pain. I also may have inherited a high pain tolerance from my mom. I also used to do yoga and have used some meditation techniques to help my IBS. I use some of these with my fibromyalgia also. Kind of like looking into myself and focusing on the pain area and telling it to calm down. Or sometimes even telling it to calm the f*** down!

This is my first time visiting this site and learned tonight that those electric shocks are fibromyalgia. I call them zingers. Good to know all this crap is related anyway.

Nice to know you are all out there. Friends, family and coworkers just don't understand this. How do I explain that today I'm at a pain level 8, but tomorrow I might be at a 2?

 

[cmetryme]

Getemgirl, thanks for sharing with us.

you seem to have some of the techniques we use to reduce pain.

you asked:

Friends, family and coworkers just don't understand this. How do I explain that today I'm at a pain level 8, but tomorrow I might be at a 2?

I have a post called "what is fibromyalgia"

it will explain how the pain messages are sent to the brain.

It will explain how to tell the family/friends.

Telling folks that care about you that you have fibro is very hard on them too. they want to help you.
but there is nothing they can do to help you. only support you.
co-workers, you really just want to keep it to yourself.

if you have questions please continue to post as the folks here know and understand you.