Status
Not open for further replies.

MoonSwing

New member
Joined
Jan 1, 2015
Messages
4
Reason
DX FIBRO
Diagnosis
06/2011
Country
US
State
Delaware
Hey, decided to join a support group with the new year. I was spending too much time on the floor crying. Quick history of my life: I'm 20, was away at school but had to come home this November with an awful flare up. Haven't found a helpful dr, hate being stuck back at home, lost many friends due to their lack of understanding, and overall just hating my life. I also have Bertolotti's Syndrome meaning my L4 vertebrae is partially fused to my pelvic bone causing excruciating pain.

I used to be a swimmer and rower but my dreams of collegiate sports were taken by Fibromyalgia. I need serious help figuring out how to feel better so I can have a life outside my bed at my parent's house.
 
Welcome.first off being so young with this illness is no joke,I feel for u I really do. But the first thing u have to do is learn to forgive yourself.coming to terms with what u had and what u have now in never easy.u must keep looking for.a good Dr and the right meds to give u a life back.change what u can and wave goodbye to what u can't for now.life will get better but it takes time.your not alone and this is one of the nicest site I've been on xx
 
Thank you so much Forgetmenot. That was very uplifting and much needed xx what are your best tips and advice for dealing with your pain and symptoms.
 
You are so young to be dealing with this mess. I was fortunate to not hit the really noticeable changes until I was in my early/mid 40's. What I have found is that I have had pretty substantial changes years to year so I have to keep trying to be inventive to maintain. My major issue would be my legs. I also have pelvic pain and hip pain etc., but my legs are day in and out my most difficult deal.
My best advice is be open to most anything. I do take pain meds now...every day...most all the time. I am still able to work with some modifications (I work remote from home 1/2 the time), but aside from meds I have gone down the road of analgesic ointments rubs, compression dressings, heat wraps, water aerobics, hot tubs, electrical stimulators, lymphatic fluid strips, saunas, stretching (exercise ball), walking, and even music blaring in my headphones to distract me ...not good for the ear drums though! For me heat and compression are my best friends. Ace wraps, mens basketball socks, leg warmers, leggings, sweat pants....layers and layers. My heated throw blanket is priceless. Hot baths and hot showers to just let hot water run over those muscles to relax them. Sometimes that ritual happens several times a night. It is frustrating. I would really recommend you find a good pain management doc who will work with you to find good solutions. It may be yoga or exercising in a heated pool? Maybe some meds needed. What ever it is do not give up. DO NOT GIVE UP. Try it all and find the the best solution for you. No one has that answer, but it sure helps to pay attention to what others tried to give you ideas you may not think about. My best to you......I will be hoping you find a little comfort...that means a lot as you know
 
Well missjo hit the nail in the head there. Try everything.dont dismiss anything offered because one of them will help give you a life back.
My grandma used to say to me, God only give us what we can deal with. So I guess he has a lot of trust in us.hehe
 
I kind of wish we lived closer. I am in the exact same boat as you. I am 27 and I live upstairs in my parents house. I came right out of highschool with these problems. I havn't had a job..And my dreams of being a programmer or artist has dried up. I lost all my friends and havnt made any new ones in 6 years. It sucks. I have been on allot of meds and the one I am on now makes my days just bareable. I hate where my life has gone. And now its a new year I figured I would try anew and see if I can slip back into life again. So I am here. Spilling my guts to complete strangers. But knowing I am not alone sort of helps.
 
What about your art? I actually have turned to doing artistic or crafty things because many I can do sitting on my bed with my heated blanket. I have found these things to be great to distract me...give me some purpose....even sell some things for some extra dollars. What kind of art do you love?
 
Ok girls,

If you are staying in bed with fibro , you are not getting the right help from a good dr... I admit that i go through flares that knock me down , but they pass and if bad enough i get physical therapy to get through them...i can only take low dose of pain meds, but there is a lot of good self help ...like yoga and stretching... And we gotta keep moving or we only get worse...using heat helps, and topical pain relievers...you need to get out there and get the right help and it may take more than one try but you can do it....you can get your life back..it may be less active than you luke , but still good.....
 
LLMI,I agree with the moving .ive offen said we need to move to keep us less stiff and in less pain. And I no how hard it is to move some days,but the longer u don't move the harder it is when u do.
 
Wow, I defintely did not expect so many people to respond so thank you to all! It's been interesting to deal with all this to say the least. Right now I'm waiting to be tested for delayed food allergies to see if the research dealing with inflammation in the digestive tract contributes to the overall inflammation and symptoms from fibro. I ask any of you to please let me know if you need anything from me. And again, thank you for all of the advice and support. It is comforting to know I'm not alone in this mess. I wish you all the best XX
 
Can you muster up enough strength to go to a Gym? Meet some new friends, go to Church? Understanding people there, I would hope. I can relate to being stuck at home.
Hang in there ok?
 
Status
Not open for further replies.
Back
Top