I can relate to your pain hon... I have Fibro as well, along with Myofascial, 3 severe back problems, arthritis, and one hip higher then the other so it hurts when I walk or lay too long. My pain level, which I don't tell many people, if any, is usually at an 8. It's been at a 9-10 as well and that is when I do a lot of crying, throwing unbreakable things, and screaming in my pillow. I too use a heating pad. But my PT said to use ice first for 15, then the heating pad for 15 and do that back and forth for an hour. It does help to some extent. If you need to vent, yell, or whatever, feel free to message me, I will answer if I'm on and try to help if I can. I do know how you are feeling and I hurt for you.

Thank you grammy. Your support means so much to me. I am so glad I have this group. Its been such a huge help. Thanks for being here when I needed someone.

So many of us are really grateful for DS and the FMS group here. It has saved me so many times. My "normal" friends get so tired of hearing about my current (well, let's face it, daily) pains and other symptoms, they just can't take it anymore. I always tell them to stop me if they can't handle it anymore. It's not as though I want them to be miserable along with me, it's that I want someone to touch me!! The Right Way of touching, which is impossible. Being touched is the biggest thing I miss about being with my Ex-husband. We are still friends, but there are no more foot rubs or shoulder rubs. I can't stand a standard massage as I have terrible backlash of pain afterward. I take a warm shower as soon as I get home, as my therapist suggests, but it always hurts me. There is no way out of this and I just want someone to understand what I live with. How brave I am. It takes a major warrior to live with this. I saw that with my mother who lived a lot longer than I see myself living.
I didn't mean for this to turn into a rant for myself, but I guess you can probably understand that, Carolina Sal. I understand you, get everything you are going through and know that you are a warrior, too. We are all warriors and we deserve some kind of medal for what we endure. Just keep up doing the recommended treatments and hope for the end of the flare. I'm into the second year of my current one, actually it's been over 2 years now. I'm pretty darned tired of it, let me tell you. So I'll send along a Perfect Hug for you and gramybear, too. We need one or twenty.

No one else understands what we deal with everyday. I always said that I would tell people the truth if they asked. I guess I wanted to educate others that knew me before and after I got sick. But I can tell that people are tired of hearing about it so I am trying to just smile and pretend that all is well.

I feel like I am living a lie when I do this. Pain is a part of who I am. It would be nice if others understood this.

Sometimes our friends don't understand what it's like - we "look healthy" so sometimes they don't know what to say. It's sad you didn't get one response from your FB friends, but know there are people here who do understand and are there for you. I will say a prayer for you, Carolina. Hang in there, hon.

Hi CarolinaSal. I'm sorry that you are experiencing a terrible flare right now and I hope you get some relief soon! When my flares are really bad the pain is worst in my neck, shoulders, upper back, thighs and cervical spine. My pain has always been the worst at night. Are you taking any sleep aids? When my pain level is high I go and get in a hot tub or take several hot baths with Epsom salts. I have a portable jet spa that I hook up to my tub and I position it so the bubbles massage my thighs. Massage helps a great deal. As a matter of fact massage is a part of my weekly routine. Maybe you could try some pain rub on creams to take some of the edge off. (biofreeze, arnica oil etc.) I hope your flare ends soon!

I really understand....I sometimes am in such pain I can't move and my husband says if you get off the couch and do something you would feel better...boy I'd like to tell him to get out and leave me alone...if I had a broken leg and had a cast that he could see he'd be right there to help...he is just getting tired of me not feeling good and being able to do things and I don't know what to do about it...he is making my life even more difficult than it already is...sorry, I'm suppose to be giving you support instead of venting about me...

Thank you....each and every one of you. I treasure your friendship and support.

Today the pain isn't as intense. I put some Lidocaine patches on and I really think that helped. And I do take a PM pill but there are times when the pain is so severe even they don't help. Funny but what helps one day may not help the next.

But what does help is having my DS friends to turn to. Thanks again!

I'm so sorry, Carolina, about your pain and also about your so-called "friends." No one gets this at all, unless they have it. I get to where I don't want to keep bringing it up with people, b/c surely they must be tired of hearing about it all the time.

Well, guess what? Imagine how tired I am having to go through it everyday? All I can add is that I do understand, as does everyone else here. So the moral of the story is: come here first!!

Love and hugs.....Elizabeth

Without sleep the pain is unbearable. I am so sorry for your miserable day and hope you can find some new ways to get "good" sleep, deep sleep. I use xyrem, (sodium oxybate) to turn off my brain. Nothing else has done it for me.


With sleep our symptoms are more manegable. I've been using xyrem for over six years, since my psychiatrist, a sleep specialist, started working with me. A few sleep studies later, I use a mask for my vpap machine and get the deeper levels, stages 3 & 4 of sleep.

Wishing you a better day, better pain control, your friend, Abby

I understand exactly what you're going through. I hope you feel better soon. Be extra kind to yourself! I say it, but I know it's hard to take care of ourselves sometimes. We will make it!

Hey neighbor, I am in Greenville SC. The weather has been so bad for us. That also takes a toll on us. Don't beat yourself up for your feelings because it just causes more stress/then more pain. When my pain is that bad I pile up and do next to nothing but rest and sleep for at least a day or 2. Just don't get down and stay down or the stiffness will be twice as bad.
I know it can be so painful when family and friends don't get it. I have recently been told " I would almost swap places with you, when I said " Staying home ain't all it's cracked up to be " she said "Oh I wouldn't be able to stay home all the time " . I didn't realize we choose to stay home!
That is why we have our Fibro Family ! Our friends and family do love us they just don't get it. Love and hugs' Terri

I am so sorry what you are going through. Dealing with the pain is horrible and not being able to sleep makes it unbearable. Lots of warm thoughts sent your way.

Carolina Sal, as so many have said, unless you know what this kind of pain is like, you have no comprehension of it. I'm on FB, too, and I know my cousins would be the only ones to say "hope you feel better soon." You and I know it's unlikely we'll feel better soon.
Vent here because everyone on this site knows exactly what you are talking about!

I also have trouble sleeping. I take 150mg of trazadone about 2 hours before bed. But like you, because of the pain in my hips, back and shoulder make sleeping a challenge even with meds. But because of addiction I am unable to take pain killers.