The pain and fatigue this weekend! Seriously, does fibromyalgia get worse? I am almost 39' diagnosed at 24. I feel like I can't handle it anymore, and I am young still :( I don't want to be recluse and not working.... Feeling poopy.
I think its like riding a roller coaster, where the downhills are me feeling good and trying to do too much, the curves are when I'm thrown another setback and just trying to hang on, and the uphill climbs are when I'm literally struggling to get through 10 minutes-10 hours-10 days...
It must be the weather because I'm having more issues this weekend than last weekend.
I've had symptoms of fibromyalgia since 2009 but wasn't diagnosed until 2011. Its all the other issues thrown on top of the fibromyalgia that makes me want to scream sometimes. That's when I listen to soothing music.
I have been in pain since 2005. In July of this year my pain reached a level where I was completely unfunctional. I would lay in bed moaning, crying and having seizure like episodes. Nothing would help the unbelievable pain. I went to my doctor and she referred me to a rheumatologist. Finally I was diagnosed with fibromyalgia. The medications have calmed it down some but my pain level only goes down so far. I use to hope to be pain free now l just hope someday my worst pain could be a 4 or 5. I haven't worked in almost a year and am becoming more like a recluse. I hate going anywhere because I walk funny because of the pain and I know people are staring at me. I am grateful that my husband understands as much as someone without it can. So for me, yes I believe it gets worse.
I am a recluse. I am 42, and I use to be the life of the party. I would make people laugh and bring them all together. I was always on the phone. I was hardly ever home. Someone was always seeking me out to help them with their problems. Now, I am pain all the time. I am not bitter but where are those people. My phone number had not changed for a long time. I was stuck home in a contraption having panic attacks with it I hated people seeing me that way. I gained so much weight from having to lay down all the time. So I became scared of the outside world. I go out like once a month. I try to go to places where no one will know me. Plus my family wants to go out when I can only take about two hours. I moved and a new family came to my house and they like my family and I a lot. They came over a lot. They still do at times. I think they are frustrated because I won't come over their house. I am scared about being around their house and germs. They get sick (throwing up) a few times a year, their whole family which is seven of them, all throw up a few times a year all at the same time. So I get this mental picture when the idea crosses my mind to go to their house. Just the thought makes my stomach feel nausause. I usually have to take a promethazine and a xanax. I am not kidding. That is how bad my phobia is. I have had terrible childhood memories of this. Not to sit on the couch or anything but I am just saying. So I am home all the time. I usually don't go outside so they are constantly treating me for vitamin D defiency. So now, I just buy it and take it every day.
There are many times I feel like I can't handle it anymore. I have made that quite clear to my doctors that we have to figure out how to treat it. They don't want to give me more pain medicine. I have never asked for more. They have just said that. So they feel like they are treating me fine. I keep on telling them that I don't want this band aid that doesn't work and falls off all the time. That is what their treatment amounts to. They are trying to cover it instead of looking for the cause. So many times it just feels like I can't take much more. Then I tell them, I will give them 6 months. Then I will take matters in my own hands because I don't want to continue to live like this. Then they say they understand. And they set up a couple of consults and don't do any blood work. It is quite frustrating. But then, I pray and ask God for a little break from my pain. That I need it to restore my resource so I can endure more. And you know, he always does. Usually it last longer than I expected it to be. Because I figured it would not last that long. But it usually will last me several days. That is when I realize that I can endure more. That I am just very tired but that I am stronger that I realized.
So maybe you are just very tired of this disease and you have been enduring this test a little longer then you feel you can handle. But you will come out of each battle and know that you are a stronger person then you realize. It is difficult and these words probably don't help. But maybe when you are feeling a litlle better, they might. I never claimed that I was smart. It was just what I was thinking.
My experience is that it has gotten worse. But my ability to endure has improved with it. My pain tolerance has gone up with it. I feel like it is sort of like getting a raise from work but then all the prices for everything raises at the same time. So as my pain increased. My pain tolerence increased. My ablility to endure physically and mentally improved. Don't get me wrong. It does get harder at times, I am just saying your tools or resources for coping with it improves. I am going to stop now because I feel like I am rambling and not making sense. That is how bad my mind is. I usually don't remember what I wrote in the beginning and middle. So forgive me if I repeat myself. I hope things improve. I hope you can start feeling the best you possibly can. I am sorry if this message doesn't make sense. I am a little off. Take care. Best wishes.
This breaks my heart. I am sitting in my recliner, in tears because I, too, have become reclusive. I was diagnosed with Fibromyalgia several years ago but started with shoulder pain in 1992. I worked for as long as my body would permit me to. I was once happy, went to EVERY party, on each vacation, to all BBQ's, and like Profiler, was the life of the party. Always making others laugh. If I go somewhere I do use humor to get through it. My pain has gotten horribly worse over the years and I also wish that my worst days are a 4 or 5 when it's usually an 8 or I hate to say, higher. I think sometimes I could deal with the Fibro but with all the other medical issues piled on, I can't. Folks don't get that when you get so anxious because you have an appointment or you've been invited to a party and the day comes and you're too bad off to go. It's lonely, it's sad and my day today, as you can tell, is not great. I was supposed to be at my Cousin's Daughter's sweet 16 in the Bronx yesterday and couldn't do it. I was looking forward to maybe getting in a salsa dance, maybe a rumba, but my pain was too bad and the thought of someone driving me there made me feel like I'd be stuck because I wouldn't have my own vehicle to leave if I couldn't cope. My Cousin who flew in from Florida is mad at me because she doesn't get it. That saddens me because we're more like sisters than cousins. Now I'm rambling... Please all of you, have a better day. I'm going to try to listen to some music and rest.