I feel so badly for you at this very difficult news. It is so hard to process as you say. And you are very young.
I’m a little bit where you are. I’m 59. I really can’t do anything. My pain doctor tries, and I’ve had some help. But I know it’s just going to be this way. The women on both sides of my family live into their 90s. That’s a long time from 59. What is in store, right?
We need to remember that we are important people. We need to ask for help. And admit to ourselves, and for me, my pain doctor too, exactly where we are. It sucks. But God has us here for a reason. Even with our pain. We have people who love us dearly. The suffering, I don’t think anyone can understand except those of us here, and others out in the world who have the same. But we need to stick together. And together do this life.

(((((Angela)))))
I really empathize & literally was crying in my trauma therapists office yesterday saying I just want to be able to be a regular 38 yr old. My words aren’t so good today because I just had some tough appointments recently, (& have another with the jaw doc tomorrow.) So I wish I could write something better but Merry wrote it well ^

I’m going to keep hoping & praying for something to get better or something good. If I saw you in person rite now I’d give you a big hug or if in too much pain a really comfy blanket.

Sending you support, strength & hope
Gentlest of hugs <3

Thank you both so much for your kind words, it really means a lot and is encouraging. i hate that you guys suffer so much too but it does help that someone understands if that makes sense! Its even worse now because my knee is messed up bad i can hardly stand or walk even with my cane, have no ride to the DR who COULD of gotten me in today but not tomorrow, so Matt is taking me to the ER after work. I almost ALMOST begged him to call into work and take me this morning but we really need the money!

Angela, hard words to hear from a Dr. Please don't give up on hope.. HUGS !!!!!!

I've been thinking about your post for several hours.

This is one doctor's opinion. Her opinion is not final. Things are changing very rapidly in the medical field. Your situation is a difficult one given that you have so many health issues. But, no one doctor should say with absolute certainty that this is your life . Nothing is certain in life. I think that a doctor who doesn't respect a chronically ill patients need to have and hold onto some hope is burned out. You've overcome a lot of obstacles. Getting your weight down and keeping it in check has got to help. I think that her comments were unnecessarily harsh and really out of line. Your reality can be so much more. Hugs.

Milily i will not give up hope and thank you, New things can come out and treatments etc anytime.

Fantod, i am going to talk to my PCP too. Its ust so hard to hear and now with my knee messed up it makes me feel worse. hugs

Fantod is smart. I never thought of that side of it. She’s not the queen of doctors after all.

Hi Angela,

Don't believe everything the doctors say! Especially one who says you will "ALWAYS be in pain". I've lived long enough to see how many times the doctors were wrong about such predictions of "you will never get well".

I haven't been on this website for a few months. I have been feeling significantly better (fibro) pain-wise. But I had been dealing with a cervical spine stenosis of my own, and may be facing surgery. Did you ever get that surgery for your spine stenosis? If so, how did it go?

The doctors can't be sure, they just give their best guess. Fibromyalgia is not the same for everyone. I also have fibromyagia and arthritis in my upper and lower body, along with disc degeneration of neck and hips. It IS quite frustrating at times, going through different emotions, and expensive, other times I just go along with the flow. Everybody wants to refer you to another specialist. Your loved ones want to tell you what you're doing wrong. I hear things like, "You've got to keep pushing. No pain, no gain". And "when you exercise you have to push through the pain." This is when you clearly know those around you don't understand. Fortunately, I'm still able to work, at desk of course. I do find that I lose time at work because of it. I really struggle with my mental health. I am fortunate to have medical insurance that provides a nurse and life coach for free.

I'm currently taking Humira and Hydroxychloroquine for arthritis, but these are not the first meds I tried. It was trial and error. And yes, I still have pain and flareups. But I can definitely tell a difference. Before Humira, I was quite swollen and unable to wear shoes, and was very difficult to use my hands.

Fibromyalgia: I take Lamotrigine, but of course as with arthritis meds, it doesnt take pain completely, and sometimes I'm not sure if its even working because of the different pains I still get.

I think I've experienced different types of pain just about everywhere, and dealt with a host of other symptoms, such as eyes being sensitive to light, which makes it difficult to drive at night due to the ongoing headlights hurting my eyes.

Doctors always want to send you to another specialist because they can't determine what's wrong so you spend money go to these specialists, getting X-rays, Ultrasounds, MRIs and CT Scans. Only to be told they couldn't find anything, and it's just fibromyalgia symptom.