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Bird in a cage

Feb 03, 2016 6:24 AM

I can't stop thinking about the future. I'm a 21 year old woman scared I'll never be able to hug my family and friends without extreme pain. How am I ever going to "fall in love" with someone if I can't touch them and they can't touch me without causing me to cry from pain. I don't want to live another year with this torture. My parents even say sometimes they feel like my disease hurts them just as much as it hurts me. Yet they get to out out with their friends and drink when I'm in bed in pain 20 hours a day. I've been writing little poems about being a bird locked away in a cage, acid rain pours down on her and she is stuck there isolated with no help.

Feb 03, 2016 9:52 AM

Would you be willing to share your poems?
I'm sorry it's so bad. I try not to think about the future because the uncertainty is too stressful. Hugs.

Feb 03, 2016 9:54 AM

I'll think about typing them up here if y'all would like that!

Feb 03, 2016 10:53 AM

I do not know what your illness is, but do not give up hope. You may find something that helps you and gives you good days. Hopefully we can help give you some ideas to reduce your pain.

Feb 03, 2016 11:47 AM

Megablondie, I understand where you're coming from. It is very difficult to imagine your future (especially being in pain) and then wondering if it's going to be worse or how can you fall in love, etc. I know you're scared and I know that the future is uncertain. The future is uncertain for everyone (including those people who don't suffer with pain). Once you learn to live in the moment, you will find things a little easier. What you need to do is go ahead and mourne the life that you had (or planned to have) as a loss. Cry, get angry, feel sorry for yourself, have a tantrum if you need and then "bury" it. Not in the sense of holding everything back, in the sense that you've lost part of yourself. When you've done that, staff to negotiate your way through your life. Learn your triggers, learn what helps to make you feel a bit later. Take breaks, adjust to what you "new normal" has become. Know that we will stand behind you and support you as much as you need. Just as a point of information there have been huge improvements made in SCS and the pumps. If that's not a direction you choose to go in, that's ok, it's your choice. Know that they are coming up with new things all the time so you may be pleasantly surprised as to what treatment they may devise that may work wonders for you. I'm wishing you the very best. Please try to hang in there and use your energy for now, for this moment in time. The past is over, the future uncertain, the only thing we have control over is what we do with what we're presented with now. Sending you gentle, reassuring {{{Hugs}}} and prayers that you have a more peaceful and less painful day ahead. πŸ’•πŸ™πŸ»πŸŒ»

Feb 03, 2016 11:58 AM

Thank you everyone!
I'm too tired to put away laundry because I had to take my car to the shop this morning for an hour!
Hopefully after laying down a bit I'll be able to make some lunch and fold clothes! I really appreciate you guys encouraging me!

Feb 04, 2016 3:57 AM

Meagan I'm 37 and I know what u mean. I had lived my life so focused thinking I'd have time to do what I thought were the little things. I have been have pain for a few years before diagnosis but pushes through til the day my body pushes back.
The emotional pain is also one that no one gets unles u live it like us. I'll most likely never have kids due the tumors I did not know where growing inside me and now this pain fatique disease. I can say that as far as finding love.yes.ull find it. I doubt myself daily since I've got a boyfriend that I have tried to push away since I've been ill. The person who is ment for u will always find u. Just keep your mind and heart open. Heck who knows u may find one of these dine rixh doctor's that will be the love of your live..u go girl..!!!!! As hard as it is and as weaknas I'm feeling I'm asking u to please believe it's gonna be ok

Feb 04, 2016 6:37 AM

Thank you newfibrogirl! I am just worrying too much and being afraid of the unknown!
I also intentionally push people away because I only have time and energy for 4 friends and my family so I've had to cut back on who I talk to.

Feb 04, 2016 9:24 AM

Your welcome Meagan..your blessed to have that many friends still in yyloir life and no u r not worrying to much. You have every reason to be concerned. But together we will get through this

Feb 04, 2016 1:07 PM

(Big gentle gentle HUG )for megablondie..... You are Never alone.

Feb 04, 2016 6:27 PM

Do u have fibromyalgia?

Feb 04, 2016 6:34 PM

Oh im sorry:( I know it hurts

Feb 04, 2016 7:03 PM

Yeah it's not fun felling like some has a voodoo doll of me somewhere stabbing it with pins and lighting it on fire every day.

Feb 06, 2016 2:12 PM

Hello everybody I new to this site can someone please tell me what CRPS/RAD Is
I was just recently diagnosed with fibromyalgia even though for years I've been suffering with chronic pain / lumbar Radiculopathy Sciatica neck and jaw pain and because my doctor didn't know much about fibromyalgia he try to make me think that I was a drug addict .....in a sense and it was withdrawal pain , from the Norco I've been taking and that I was feeling pain because of that . But finally he sent me to a Rheumatologist and he told him that I had fibromyalgia .... for years he has just been treating the symptoms migraines shoulder pain muscle and joint pain.. memory loss... numbness in my hands and fingers. I guess I'm hopeful in a sense because now I have a diagnosis and I'm not crazy but at the same time it doesn't relieve the stress and pain that I'm experiencing.

Feb 06, 2016 2:17 PM

Welcome a Pain free! Glad you stopped in and introduced yourself. No, you are not Γ§razy.. We have a lot of fibromyalgia folks in here as well as chronic spine pain etc. Much love And blessings, Terri

Feb 15, 2016 3:12 PM

Meganblondie, I can't imagine being young facing all my illnesses, like many of you are. I was for the most part healthy, raising children, and working until my mid thirtie., And after a few years a return to work again. It all came to a screeching halt in 2010, and I'm 54 now. My health has been a runaway train, downhill (or a snowball... Lol) ever since! It takes every ounce of energy to do one activity at a time, whether it's shower & dressing, cooking, cleaning dishes, doc appointments, or playing with the dog. It's draining! I couldn't add anything to the advice AlwayZ gave. Grieving what we lost is vital to going forward and finding out new normal. Take it one day at a time, one step at a time. Pace yourself and rest frequently. You'll figure out triggers and things to avoid. I'm sending you gentle hugs and prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

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