Hello Fibro Family :)

Welcome Introductions
1

Hello everyone!

My name is Brooke, and I have been recently diagnosed with Fibro. I can recall having symptoms for about 2 years now. However, I have had severe migraines for 5 years. Like many fibro patients it took an extensive period of time for my final diagnosis to be reached. In the beginning the pain would hit me like a ton of bricks and I would be wiped out for weeks at a time and then suddenly it would leave and I would be back to normal. The doctors said I had a virus and that was it. Six months later it would come again but worse, and so forth until it was an everyday thing. Every test in the book was done, so much blood was taken. I am sure many of you can relate. My Neurologist was the one who finally made the diagnosis.

Today, I am a freshman in college and trying to cope with the struggles fibro brings. My hands and back bother me the most. There are times I am unable to take notes in class, or my writing resembles a kindergarten student's. I also drop things constantly. Does this happen to anyone else?

The firbofog has recently really begun to set in. It amazes me how easily I can forget something I was just doing, or about to say. My mother (also a fibro fighter) has struggled with the fog for many years and now I finally realize why she asks me a question three or four times.

I feel very alone at college in this fight. I do not want anyone to look or treat me different. I want to be the same strong girl I always have been. But it's hard when I can't get out of bed in the morning, and get maybe four hours of sleep at night. Or when all I want to do is cry because I am in so much pain. ON the days I feel well (and by this I mean a tolerable pain level) I try to do so much, and act "normal" that the next week I end up paying for it.

Thank you all for your support, It is a great feeling to know that there are others who are out there feeling the way I do. God Bless you all <3

2

Hello Brooke and welcome to the site. I have not been on long but I am so happy I found this site. Not only will you find compassion and understanding but you may find new and or different treatments that may work for you. If you have questions... ASK. You will be amazed at the response.

You do not have to deal with this alone.

3

Thank you Gaila! If I have learned anything about Fibromyalgia it is that its treatments involve trial and error. I know that everyone is different and it's a matter of finding what works for me. Thank you for your support, It's great to meet new people <3

4

Hello Lovett,

thank you for taking the time to respond. I completely agree that this should not be something I allow to take over my life. Thank you for your support. God Bless!

5

Hi and welcome :slight_smile:
As I read your post I just had to smile. Boy do I understand. My daughter just said to me- mom you asked me the same question three times. Although I never wish for her to have anything or fibro ever, but for you to be able to understand your mom… And why she does the things she does… Well you get what I’m saying.

Me…I drop things all the time. I forget what I’m doing all the time. I turn on the kitchen water, and walk away. I open the fridge and the freezer and come back hours later and they are opened… Yes I do all these things, and MORE! so I totally understand. I am doing college but online, I take notes and sometimes I can’t read my writing either, I could not imagine sitting in lecture and having to take notes if my hands are bothering me. Maybe you can try a recorder??

Anyways do what you can when you can, rest as much as your body says too, and never, never feel guilty!!!

Hugs :slight_smile: and smiles
Joy

6

Hello Joy!

Thank you so much for the reply. It's an unfortunate blessing that my mom and I both have fibro. It's a terrible disease, however we are each other's biggest supporters. I have gained so much respect for my mom, and as much as she wanted to explain to us what she was going through I truly did not understand until I was going through it myself.

My hands are one of my main problems right now, which is something that my mom does not experience. I appreciate you sharing your stories with me, it makes me feel a ton better about my symptoms and the obstacles they cause. I have recently begun to record my lectures, which has helped tremendously. Now if only I could stop dropping things!

Sometimes I can't help but laugh at myself when fibrofog gets the best of me. Thanks again for the advice!

Hugs your way as well!

Brooke

7

I get Botox shots every 3 months for my horrible migraines. I also use peppermint oil to massage into muscle spasms and head when nothing else works. I don’t sleep either. I have nonparkinson’s tremors in my right hand and drop things. Topamax has really controlled it. I hope this helps some. Gentle hugs. God Bless.

8

Hi Brooke and welcome to our fibro group. I'm sorry you have it. I can't imagine having it at your age and having to deal with college, work, etc. You have my admiration for forging ahead in your pursuits.

That being said, I think there is nothing wrong with telling some friends or sympathetic souls at your college about the fibro. After all, you're a person with a chronic illness, not a criminal or a prisoner or anything bad. You're just ill. Chronically ill.

Yes, I have days where I drop and drop and drop things. Then at other times, I'm okay. And my arms hurt, sometimes the wrists. So hard to use the computer! For you, I would suggest asking if you could record the lectures, in case you can't write some of it. Or perhaps a computer that writes down what is said to it. Your worry about missing notes is legit. Fibro can really mess with your writing or typing skills sometimes. Recording the lectures could also help when fibro fog hits because yes, it does tend to come around, especially when you're tired.

Maybe you could look on the 'net and see if your college has any fibro groups? It might help you to talk to others your age about the fibro. Although there are young sufferers on this site as well. I think there's even a group of young fibro sufferers on this site. Just go up to the area that says "groups" and click on it. You can then look through the groups. Of course, you might not wish to do this or they might not have met in a while.

May I suggest that in addition to letting a few friends of college classmates about the fibro you actually go to the college and sign up as a person with a disability. The reason I suggest this is if you eventually need to have that tape recorder in class or perhaps some adjustments on taking tests due to the fibro fog or aching hands, etc. It's something you might want to put some thought into. Because fibro does tend to be progressive for a lot of us.

I hope you decide to stay on here and read/participate in the discussions. You'll feel less alone and learn a lot about dealing with the illness. The most important thing is to pace yourself. That means to try to limit the nights you get only 4 hours of sleep because the fibro will hit twice as hard. Same thing about pushing yourself to do things and go go going, the fibro will get you. You have to rest a bit, can't push push push without expecting the fibro backlash.

But we understand you here and are happy to support you.

Hugs to you,

Pet

9

Hi Brooke, I really feel for you having to go thru this & feeling alone during your college days especially. I can remember when my children were in college & I would stress about them. That's all behind me now. Brooke, you are never alone & don't you forget that. I am here for you & the others are as well. I certainly identify with the finger/hand issues. I use to be embarrassed by the dropping/flinging things. I dropped things so much til I start to get very frustrated & angry. Ppl would rush to pick them up for me but I try to stop them. Well guess what, I'm no longer bothered by it anymore. I'm not bothered by anything having to do with what others think or say. This is who I am & FM is what I have...take me or leave me. My goal is to get & stay as healthy as possible & I don't need negative ppl in my life & neither do you. You have school to deal with. KEEP IT MOVING!(((FIBRO_HUGS)))

10

Hello Brooke,Love the name.My daughters name is Brooklynn;-)

I am new here too...isn't it great!? I was only diagnosed 11 days ago and found this website just last week. They're wonderful! Like you,I've been suffering alone for years but I was only being treated with depression. The pain started getting really bad about a year ago.By last fall,I was completely overcome by pain.This fibro family has been wonderful. All those strange symptoms I thought must be in my head....well lets just say I went from almost losing my mind to finally seeing that i'm not crazy,others are experiencing the same things and I'M NOT CRAZY! What a relief...

I can't imagine having to study with fibro. The CFS part for me has been a huge challenge for me. The memory problems and lack of concentration...I find myself sometimes wandering around the house,making trips up and down the stairs,because I forget what I went up for,stay and try to remember,come back down,remember,and have to go back up again. Good way to get some exercise I guess.lol

I got my wallet stolen at Sobeys on Saturday.... I took it out to pay for a prescription. It wasn't ready and I was talking to the pharmacist , got distracted , put it down on the counter and walked away without it! When I returned to the pharmacy counter , NO WALLET! after running home to make sure I didn't actually leave it there , going back to the store , the manager checked the security footage , and as I suspected , I left it on the counter , walked away to get the rest of my groceries , and the next customer to buy a prescription picked it up and walked away! By the time this was all said and done,I was in a complete sweat, hands shaking,couldn't think straight,LORD...what a freakin fiasco! The pharmacy has the name of the woman who took it,it's all there on video,and the privacy laws won't allow the pharmacy to release her name! Stupid or what! So now I have to replace all of my stuff....

Anyway,I'm here to welcome you,not to scare you off.lol This could have happened to anyone,but I can't help but to blame myself because I'm the one who set it down and left it for the taking in the 1st place. It happens all the time only this time it's gonna cost me:-/

My doctor started me on Methylphenidate (Ritalin) just this past Friday to hopefully help with the Chronic Fatigue and the Fibro Fog. You might want to suggest it or at least inquire where you're in college,trying to study ect. I already feel more alive,it's too soon to tell how it how effective it will be overall as i'm not up to the target dose yet but i'm hoping for the best.

Hang in there and feel free to vent,ask questions,anything. Nobody here is going to judge you.

Hope you have a great day;-)

11

Hello tricky! I am going to have to try the peppermint oil! I was on Topamax since I was first diagnosed with migraines at age 14. My doctor is slowly leaning me off it, and hopes that Lyrica will help to control my pain as well as my topamax. It really worked for me to control my migraines, they would be so bad that I would pass out. I hope all is well!

12

Hello Pet! Thank you so much for all your advice! I have begun to look into student disability on campus, and there does seem to be many options for me. The recorder was one of the first things they suggested and I have begun to use on a daily basis. This has done wonders for me and studying for exams. I am so blessed to have found a place where people are willing to be so supportive and offer so much advice. Thank you for taking the time and sharing your thoughts!

God Bless.

13

Hey CHAR! Thank you so much for your support. I know that college will be a struggle, but being just recently diagnosed I am hopeful that it will get better once I have the right combination of medicines, and therapy. I have chosen to also live healthy and happy, to not let this take away what is good in this world. I have Fibro but Fibro does not have me! Take care :)

14

Hello fightergirl! My nickname is also Brooklyn ;)

How are you doing with the recent diagnosis? I know it was a shock to me, but many people find relief in the diagnosis after suffering for so long without answers. I can relate to your wallet story all to well. I have searched stores from top to bottom in search of a phone or glasses that I actually forgot at home. Don't blame yourself, I know it's hard not to but you cannot help your symptoms even when it seems like you should remember something as simple as your wallet. It can be extremely frustrating, I have watched my mother go through this frustration for many years. I had a huge break down today and I know it's hard not to get angry at yourself, and at everyone else for not understanding what you are going through. Sometimes a good cry or even a good laugh helps.

I am going to look into the Ritalin, I know it helps with diminished attention as well, which unfortunately I have begun to suffer with.

God Bless!

15

It's been quite a roller coaster ride since my diagnosis.I walked out of the doctors office thinking HOLY CRAP...FINALLY!!!! And so it seemed like that's all I could talk about for about 3 or 4 days. Feeling validated..pretty good. But then it started to really sink in and I would cry uncontrollably for hours because I know what this means. Everyday life will never be as easy for me and THAT SUCKS!

I've pulled myself together pretty well now though.The shock has worn off and it's time to get down to the buisness of doing what I have to do to make the good days outweigh the bad.I'm not an angry person usually but the whole wallet incident got me pretty wound up. I called the store this morning to see if there was any new info on the thief and head office wasn't willing to release her i.d. I was FURIOUS! Being nice about the whole thing had got me nowhere and I got kinda wound up with the manager(who since reported that they were releasing the info to police,finally),but I think the stress of the diagnosis,finances,family and now this,just put me over the edge.I'm better now though.hehe Sometimes ya just gotta let"er fly I guess.;-)

I hate that your Mom is a victim of fibro also,but who better to support you (besides us LOL). You're not alone.Maybe she could join our family as well?

I laughed a lot today.My baby (11) wasn't feeling well so I picked her up from school this morning. Just overtired from a late night sleepover saturday so she was feeling better within a few hours and we laugh at everything.It IS the best medicine.:-)

Take care and keep on your fighter face

16

Good luck with the Lyrica. I was allergic to it. I can relate to your migraine history. I hope you get better quickly.

17

Hi Brooke,

Welcome to the group! It’ s so nice to have you with us!

I’m always sorry to hear that this illness has grabbed another, especially one so young, but you have certainly come to the right place. Though most of us have something along with fibro, and it may not be the same thing, we all understand the struggle.

There are many people your age in college and you may find them on one of the groups within the site. The group tab is at the page top, and if you don’ find exactly what you are looking for, please feel welcome to start a group of your own!

I’m glad you posted and introduced yourself! Just remember that we all understand how you are feeling, and there is almost always someone on site.

It is a tremendous relief to be able to come to the realization that you were not imagining all of the bizarre things this does to us. The ’ fibro fog’ was best explained to me by my Rheumatologist as " the result of chronic pain, and lack of proper sleep due to chronic pain. " Hopefully your Physician is trying to find the right treatment, med and dose for you.

Though I don’t suffer migraines there are many here who do that will be reaching out to you.

Everyone struggles with something, so, so hold you head up high at college. You deserve to be there! You. Can be very proud of your efforts and please know that we’re all in your corner rooting for you!

Wishing you well,

SK