Hi, I’ve never joined a group or anything before, but honestly I’m desperate at this point. When I was fourteen years old, I was diagnosed with fibromyalgia (juvenile). It got worse, then it seemed to get better. Only a few aches and pains it seemed like. I am now 21 years old. Three months ago today, I had my first baby. I was taken back to the hospital a week later for toxemia. Since then, it seems like everything has gone downhill. It’s like every day I wake up with a new problem. I’ve had chest X-rays, an echocardiogram, ekg’s, and tons of blood work. I’ve also been diagnosed with anxiety. For some reason or another, I’ve convinced myself that I’m dying of something, most likely a blood clot. I know how stupid that sounds. Logically, I know it isn’t. But there’s something in my mind that won’t let it click. Everyone looks at me like I’m either an idiot or a hypochondriac because I keep telling them my pain isn’t consistent in how it feels or where it’s at. Sometimes it feels like there’s a screw stuck in my bones and if I could just get it out… Or a sharp stabbing pain. Or a muscle cramp. Or just this horrible burning feeling. As far as tender spots go, I know right below my shoulder blades for sure hurt terribly if the slightest bit of pressure is applied. But everyone keeps telling me it’s all in my head or I’m convincing myself something is terribly wrong and that makes pain manifest in various places. It generally hurts the worst in my legs, arms, wrists, and back (mainly underneath my shoulder blades). I also get this extremely tight feeling in my chest and throat that makes me think (here we go again) that maybe a blood clot is traveling into my lungs. I don’t know why I can’t get that out of my mind, but it makes me panic. I’m skeptical about my diagnosed of fibromyalgia because I feel like maybe I was misdiagnosed. I see some people that can’t get out of bed in the mornings. I’m always terrified something bad will happen to me. That may sound selfish, but I want to be here for my family and raise my son and step daughter. I guess I was just hoping that there’s someone else out there that is or has experienced the same thing as me and they made it out fine. I’m so sorry for the long post, but like I said, at this point I’m hopeless.
Let me start out by saying I am new to the group also. I wanted to meet people that knew what I was going through. Sometimes it gets lonely dealing with a disease. Especially if you are home bound like I am. First off let’s start with people telling you things are in your head. Nobody knows how you feel but you. You can not let them get to you. It only lets things get worse. It will make your anxiety worse. I suffer from severe anxiety. The littlest thing can set me off. It’s very hard. As for the tightness in the chest and throat that can be caused from the anxiety. I know when I start to feel overwhelmed my chest and throat start to feel tight and like they are closing off. To the point I have been to the hospital and felt like I was having a heart attack. You should probably talk to your dr about getting on some anxiety medicine. I know that has helped me tons. As for being scared something is going to happen its best to take one day at a time. Try not to over do it. I know it’s hard when you have kids. I have 3 myself. If you have family support it helps. Sorry for the long post. Hope this helps you.
Brandy
Thank you! I’m not currently on any medication for fibromyalgia, but I have been prescribed medicine for the anxiety. I have one I’m supposed to take every day and another that I take as I feel a panic attack coming on that is supposed to be fast acting. The crazy part about it is, sometimes I don’t even feel anxious, but I experience symptoms of anxiety. My mother also has fibromyalgia, but it is still hard to talk to her about it because I feel like because she is my mother, she just says things to ease my mind. The worst part is not being taken seriously about anything. My husband is very supportive; however, he has never experienced anything like it so he does not understand. Currently, he is deployed. So maybe it’s the stress of him being gone, having a new baby, and trying to work out a schedule with my step daughter’s mother as to when I can get her.
I take Gabapentin 3 times a day for the fibromyalgia. It does help ease the pain. I also take a muscle relaxer and a nausea pill because I get sick when hurt so bad. Do you see a Dr for your fibro? With your mom having fibromyalgia I’m sure she doesn’t mind you talking to her about your issues. You need a support system. It is very hard to live this life without one. And you are I don’t wanna say lucky but fortunate to have someone that knows how you feel. I’m sorry your husband is deployed. That right there is enough to cause anxiety. Your are lucky to have a husband that is supportive. My husband is as well. What I have had him do and you can as well when we returns is have him research your disease and learn more about. That way he can understand it better. The more he knows the better he can understand it. Does your your step daughters mother know what is going on? If she does maybe she can make things easier on you on.
All the fears and worries you have expressed are completely understandable, and just like many of us here feel! ( I know I do). Once again Brandy has weighed in with some great advice. I don't think I can add to that, just to say I suspect your Mum can be the one to give you the best advice, trust her!
Thank you. I don’t see a regular doctor for it. I was supposed to do that and physical therapy when I was first diagnosed, but at the time I didn’t have good health insurance or the money to cover it myself. I kind of just fell off with doing to doctors until recently. I also don’t really like to take medicine. Especially if it can be addictive. I don’t really have an addictive personality, but I’m paranoid. I’ve been prescribed naproxen 500mg for headaches because lately they have been getting severe, but to be honest I don’t really take it or anything else I’ve been prescribed. I know I probably should; however all of them say that they make you drowsy and I can’t afford to be even more tired than I already am with my kiddos. They need me, so I do my best to make sure I’m alert and can do everything I can for them. I’m just not sure what the medicines will do to me so I haven’t even mentioned needing something for the pain to my doctor as far as that goes. Thank you guys for all of the great advice!
Having a baby is a major life change and it is very stressful! I had trouble dealing with all the physical, mental, and emotional changes when I had my child too. Please seek help from a doctor and a psychologist. You will get through this. Hang in there!
Jess I will say my muscle relaxers do make me drowsy but my daily fibro medicine does not. That’s the Gabapentin. The first couple days it may just to get it in your system but they will start you on a low dose and move you up as needed. That’s what they did with me. The Gabapentin is not something you should worry about getting addicted too. Muscle relaxers you can. But I really think you would feel better if you talk to somebody about it. The better you are, the better you are for your kids. That’s the way I look at it for myself.
Thank you! I really appreciate the advice. It’s nice to finally be able to talk about it without being shrugged off or made to feel like I’m absolutely crazy. I’ve heard that yoga helps with both fibromyalgia and anxiety. Has anyone found this to be true?
I know I keep asking a ton of questions and I’m sorry. But does anyone ever have a pain that you can’t really locate? For example, when you hurt a body part, it hurts in that spot. But right now my right arm is excruciating and I can’t even locate where the pain is coming from. It’s like it’s just radiating throughout the entire arm. I can feel it from my shoulder blade to the tip of my thumb for crying out loud. Is that normal?
I cannot find anything to help it. I’ve tried stretching and moving it around (bad idea… Very, very, VERY bad idea. Definitely did not help and actually made it worse…) I’ve tried doing everything I could possibly think of except taking pain meds.