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New & Recently Diagnosed w Fibro

Aug 11, 2016 2:24 AM

Hi there! Around a little over a year and half ago I was diagnosed with fibro; suspected since Grade 7 (Im 21 now). Since then I've been coming to terms with it and trying my best to be proactive about fibromyalgia, my health, and my upcoming years. Ive been struggling with the physical and mental/emotional aspects recently so I thought Id give this app a try. I have never talked to anyone who has my condition and it has been so hard to explain to healthy people where Im coming from. It has been a ridiculously difficult journey in which I hope to connect and grow from. So I would love any tips, advice, or a simple chat with people who've been in my shoes :)

Aug 11, 2016 6:23 AM

Hello sweeti 😚
And welcome to the community. 🐫We are all here in the same boat... 🐴many of our dear friends have fibro πŸͺso u are not alone hunni πŸ€—... please read many of the threads going on... 😌how to cope with pain other than medications.🌷 Ask Questions, vent... post relavent info... or just answer when u r readyπŸ˜‰ ...above all, u r amongst friends ⚘⚘⚘

Aug 11, 2016 8:48 AM

Junglistana, welcome aboard!!! Hope to get to know you better over time. There is a wealth of information and wonderful people here who are at the ready to help when you need it. Sending you well wishes, gentle {{{Hugs}}} and prayers for a good day.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Aug 11, 2016 8:53 PM

Hi JunglistAna! I've had RSD/CRPS For many years and last year was diagnosed with fibro. I had RSD pretty well managed but fibro is kicking my butt! I don't have a lot of suggestions for it other than figuring out your limits so you can do the stuff you want/need as much as possible without hurting yourself. I do have experience a suggestion for school though, if you do not have a 504 Plan, PLEASE get one and use it!! You should have modified assignments (aka can do less if needed without penalty), extended time (longer deadlines in case you are hurting or having a flare, miss a day), tests scheduled at the best time for you (for example I'm DYING in the morning but also end of day I'm DONE!! I would need a test mid day so I could be focused best). You could also be permitted tp type/handwrite/voice-to text...whichever is least taxing. You also need rest breaks built into your day. You don't have to use all the accommodations but getting them written in can be a battle. Also sometimes there are days/weeks/months of flares. Or maybe trying new meds makes you tired/sick and you are out of school. School keeps getting harder. But you should be able to take AP classes if you want. And you should be able to skip PE requirements that are too much for you. I hope you already have one. But if not, I'm happy to talk more about it and why all students with chronic conditions should have one- and use it without worry or shame. There are so many difficulties for us!!! We need to take advantage of the few things available that can help.

Aug 13, 2016 8:05 PM

Welcome to our community family JunglistAna! I'm sorry you have fibro at such a young age. I'm 54 and it was officially dx in 2012, though symptoms started in 2007. Finding this community and trying suggestions of others, for less medication treatments like relaxation & magnesium, and gentle stretches & exercises help. I have multiple chronic pain conditions and have allergies to most pain meds, so I have built a high tolerance to pain. I've found it easier to cope after I accepted that my life was never going to be what I use to have, and began to look for the little pieces of enjoyment in my daily life. I try to stay positive because no matter what, it is what it is and I only have control of myself. Hugs love & prayers as you find your best coping methods! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 14, 2016 6:59 AM

Thank you all for the warm welcoming, I appreciate itβ™‘
I am especially interested in the 504/school aid. I got way too overwhelmed with college and fibro so I had dropped my courses and now have been self studying CAIB 1 (insurance course) at home. Im not sure if 504 is available in Canada but Ill have to do more research about it later. Any tips on how to motivate yourself on your worst days? I get so boggled down by my symptoms that sometimes nothing gets me motivated. Which can be a horrible cycle if Im by myself.

Aug 14, 2016 10:08 AM

JunglistAna, welcome aboard!!! On the worst days about all you can do is listen to your body. Take breaks as necessary and listen to music that brings you to a peaceful place, perhaps a warm bath with candles and music to unwind, some gentle stretches, guided meditation, etc.. All of these things are what I use on my worst days, today being pretty God aweful. 😒 My pain levels are so high that I'm in tears but I'll still find something funny to laugh about and make others laugh. When I need a lift I come here and help my peeps that are having trouble and do what I can to be uplifting. Stay around, get to know us and see that there is an abundance of people with information and support that will help you out when you need it. (Myself included). Hang in there. πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Aug 15, 2016 12:02 PM

Such a tough path...I just turned 19 and recently have been diagnosed with fibromyalgia. The road getting here was hell. It saddens me to see your post since you are so young as well. It's really hard having this go on and just have your life start. I think that's been the biggest emotional setback. I don't know if you can agree there. Do you have limitations or life style choices you've had to change? I hope you are finding what helps manage your pain. That's something I'm learning to do

Aug 15, 2016 1:14 PM

Oh my goodness, Im sorry to hear youve been troubled by this condition at an early age as well . But yes! Its been a HUGE emotional setback. Through out elementary and highschool I worked REALLY hard to try to get the grades I needed to get into a good Science program at a Secondary school. My most difficult subject has always been math. And for the life of me, I cannot do mental math. I have to write it all down. And the snowball effect of math each year and my brain fog made math HELL for me. I would spend hours after school doing my work and getting extra help. It was so hard. I was constantly feeling like a had a bad flu (where everyone would think I was faking it just so I could skip class, even though that would make my anxiety so much worse ), my pain worsened year after year, and I would get these terrible light sensitive migraines. I often didn't understand how flawlessly my peers were doing and why I had such difficulty. I went nearly suicidal trying to get my grades to a comfortable point for myself and my parents. And then I got into a Associate of Science degree when I moved out. But I couldn't do it, the pain and problems intensified too greatly. I ended up being bed ridden making me worse and shortly after that was diagnosed. It took me a GREAT amount of inner and outter strength to realize that Marine Biology is out of the question for my life. It took a lot out of me realising that I woke up one day sick and I wasn't going to be cured. Like, I dont even remember what its like to be happy, care and pain free. And thats really hard for me to accept on my worst days (like I can get really upset when I cant put up my hair or stay up with my friends or do the dishes, etc). I have always been a perfectionist and have always pushed myself but fibro has taught me to be more gentle and patient with myself. What has really helped me emotionally/mentally is keeping a journal and recording anything n everything and then revaluating. I used to be a big go getter; always moving around and doing things for others, not saying no to others requests . Now I have to pace myself and remember to keep myself number one priority if I want to effecient/productive. Sorry for the long ramble!

Aug 15, 2016 1:41 PM

I have to say that it saddens me to see two young ladies having such issues. Mine started young as well but didn't become unbearable until much later. I had my moments but at least I had a break here and there.
The trick is to listen to your body. Know that you didn't ask for this, it's not your fault and that this is your "new normal". It can be as miserable or as "easy" as you decide it's going to be.
I'm not saying living like this is easy but you can choose to find the simple things in life that make you smile. Take time to breathe, watch the sunrise or sunset, there's no more beautiful gift than to witness the beginning and end of each day. Listen to quiet music that soothes your soul. Do some guided meditation. Gentle stretches or just make someone else laugh. There are many moments of life that are FULL of joy and they are between those moments that are absolute shit.. Believe me, they are there.
I have days I isolate and want to be let alone and cry and wallow. For the most part, I feel good just coming and spreading some laughter throughout the group and perhaps distract someone for just a moment of no pain. I hope that you young ladies find your niche in your "new normal" and have a joyful and laughter filled life. {{{Hugs}}} πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Aug 16, 2016 3:05 PM

I was watching the news 2 nights ago and they did a story on a 9 yo boy facing ailments but pressing for his goals. He has fibromyalgia, at 9!! He talked about the struggles and choices he has to make daily. What he said at the end of the interview was totally inspiring. He said, "I may not always achieve everything I want to, but I refuse to let my illness keep me from trying.".

Hugs, live, & prayers for everyone to get through it, one day at a time! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 16, 2016 4:08 PM

Welcome JunglistAna. Would be happy to help with an ear to lend. As Lulabel says you are amongst friends here xx

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