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

[cmetryme]

im wondering what folks do when they find out they have fibro?

 

[TheBoyRooney]

I told my fiancé that the doctor said I could no longer do house work She wasn't impressed..

And personally I just found it some sort of relief because I didn't know for years,the unknown was tough.
But also mixed with a sense of fear,have they got the right diagnosis,will it get worse.

I've just see n on tv a young lad of 8 years of age in the usa with no hands or legs,he just got
both hands transplanted.He seemed so jolly and it may be no comfort when we are at our worse
but right now we may be thankful for some things..

 

[cmetryme]

TheBoyRooney,

Thanks for the laugh. i really needed that.
housework is painful. unimpressed is the usual response.
try the clothes pins on her so she understands your pain.

did you do any searches on the internet? what key words did you put in?
how did you find this forum?

keep reading and learning. ask your questions in here as we all benefit from the question and the answers.

you can do this and with a good support group you will learn to cope with the life changing events ahead.

if i can be of an help please feel free to private msg me or my friend forgetmenot. we are both senior members and really what to help you.

 

[TheBoyRooney]

I sort of knew I had it before I went to the neurologist...I found this through a searce engine I think.,like all my life I try to get through it
through humour...My fiancé had her knickers(panties) stolen off our washing line..She won't miss the knickers but we will miss the 14 pegs..

I have to pay 100 euros every month for tablets,i am wondering as this is a lifetime illness is there any government help..?

 

[cmetryme]

i would ask your local govt rep that question. as im in the usa we have disability.

 

[TheBoyRooney]

Ok thanks,knowing the irish health system the answer is no.thanks for your help

 

[PattiD]

In my case I already felt that that's what I had. Once I heard it from the doctors mouth, I felt vindicated. I had already had one doctor tell me it was all symptomatic. Needless to say I didn't go back to him again. I'm glad to have found this site.
Gentle hugs to you.

 

[cmetryme]

patti. first thanks for the hugs. im in need of those as im away from my family at this time.

so when you heard it from the doctors mouth, what did you do?

did you look it up on dr Google? did you tell family and friends? how did you tell them?
what did you look up in your search. what answer's did you get from the folks you told?
did you freak out ? go into depression?

these are some of the things im wondering about.

how can i help others here, if i dont know what they have done already or the things they have heard and learned from the
folks around them.

we are from all over the world on this site. folks each react differently do things and have experiences.

y'all (it's a Texas thing) tell me, so forgetmenot and the others here can help each of you.

 

[Loftpat]

When I was finally diagnosed, my (then) doc told me there was nothing I could do and that I'd just have to learn to live with it. After four years of pain, I fell into a deep depression and tried to OD on my psych meds. I spent weeks in a mental health hospital where I met a wonderful psychiatrist who knew all about fibromyalgia and put me on the meds I still take today. Then I went home and started reading all the research I could find on fibromyalgia, changed my diet, added some supplements, and found different ways to continue to exercise and live my life. Sure, I miss the old me, but I'm getting a lot better at living well with fibro. Some days still suck, but I know better ones will come. I have a part-time job that (barely) covers my bills, but I have a son and daughter-in-law who are supportive and help with the loose ends. I am blessed that my family "gets" it and checks on me when I go into pain hibernation. I am also blessed that I can mostly work from home , so I store up my energy and rest for clinic hours. Otherwise, I work whenever I am feeling good. which is mostly in the mornings. So, I have much to live for...including two lovely granddaughters. One was born on Saturday and I got to hold her when she was just an hour old. The other is two years old and she helps me keep going on days when I'd rather hide under the covers.

 

[DK_engineer]

I was diagnosed after a pain flare up had pretty much disabled me. I have an increased risk for autoimmune diseases and the pattern of pain was highly suggestive of rheumatoid arthritis. The rheumatologist even proactively put me on prednisone while we were waiting for my blood tests. So I spent a couple weeks reading up on autoimmune diseases and reading blogs like RA Warrior. I glanced briefly at fibromyalgia, but when I read about tender points I thought, that's not what I have, I have pain in my joints.

Then my blood tests came back normal and healthy. The rheumatologist told me, good news - you have fibromyalgia. I really was relieved that it wasn't rheumatoid arthritis or lupu. But I was aso confused because I didn't really understand what fibromyalgia is (and I'm still working on that :?

I went home and looked up a chart of the tender points so I could test myself. Sure enough they were there.

So I had two major paradigm shifts in the space of a few weeks. I went from "I am healthy" to "I have an autoimmune disease" and then to "I have fibromyalgia".

Because the pain flare was so severe, pretty much everyone who knew me knew something was wrong and was interested in my diagnosis. Sometimes when I told people it is fibromyalgia they would ask me what that is. I had a hard time answering early on because I was confused myself. People who already knew someone with fibromyalgia simply accepted it. One couple has reacted very poorly. Interestingly the female half of that couple has MS, nevertheless they are very unforgiving of my new limitations.

In the first few weeks I focused on adapting to my new situation, especiallycomputer aaccessibility issues, as I can no longer type at a normal keyboard or use a standard mouse for any length of time. This was frustrating, but at the same time it gave me a sense of control and achievement every time I figuredout a work around.

Now I am focused on figuring out how inputs (stress, medications, activity, diet, exercise) affect my symptoms. I really like hearing about how other people with fibromyalgia feel and manage, so I looked for a forum where I could join in the conversation.

One of the hardest things for me now is figuring out which things are caused by fibromyalgia and which are not. I have coped with pain, mental fog and fatigue in the past due to other causes - chronic sinus infections, chronic migraines, insomnia due to anxiety, and a weird sleep disturbance that deprived me of REM sleep. Nothing as intense as fibromyalgia, but it can be confusing whether I am feeling the effects of fibro fog or a migraine.

I kind of wrote a lot here - hope that it is on-topic and helps answer the question

 

[cmetryme]

DK_engineer,you did a great job. you found that doing a lot of research got confusing and you realized that we cant do the computer thing like we used too. you learned that knowledge is key.

understanding fibromyalgia is very hard. you first have to know what it is, in plain everyday words, not by some researcher with a PHD or doctor that knows nothing and just follows protocol.

Read my post on what is fibromyalgia and the one on "starting a daily log book and why it helps" they are under general discussions.
its plain and simple words and they will help you with the family and doctors.

thanks for sharing and making the forum a better place to visit!

 

[DK_engineer]

Thanks Cmetryme, you asked some really good questions to get a discussion started
I will definitely check out that thread. I've also started a log of my symptoms - that is really good advice.

 

[Forgetmenot]

I just didn't beilive him flat out.i don't no why, I'd never heard of fibro took me a few days to even say the word right.
I didn't feel upset or anything I was just so tired at the time all I wanted was sleep.

 

[twiggyjanlyn]

I went home and cried. Not because of my diagnosis, my step mom had fibro so I knew some what about it. No, I cried with relief, I finally had an answer! And when things are tough physically, my family and friends know I am not just being lazy. Looking back I had some symptoms in 2000
I was coping with the death of my mum, and bieng divorced by my husband all within a few months. The syptoms went away, and I didn't think about it after that. I am so happy to have found all of you! It makes it's better to know I have support!

 

[Misslee814]

I asked my doctor to explain, what is fibromyalgia? I felt relieved! I knew something was wrong with me. My PCP kept telling me I don't know why you are having this pain. I finally had an answer to my unknown pain. My daughter asked me Mom are you pregnant? My family is just getting to understand what I'm going thru, because I'm still learning about Fibro myself.