Should I expect this to get worse?

I was diagnosed by my family doc about 3 yrs ago. I had a few bad days here and there. But lately it seems to be getting worse. It sems to have settled in my lower back and hips and isn’t letting up. I used to have a 3-4 days break from it. Now it’s everyday. I can’t sit too long or stand too long anymore. I think my family thinks I’m nuts. I have heard “you need to exercise” “are u better yet?” or “oh… I have a friend that has that” if my dad calls to ask how I am, and I say today I woke up feeling pretty good, his response is … Well you danced at the party last night for 3mins - maybe u need to do that more often. But as the day progresses I pay for that 3 min dance. I can see how they can view this as “all in my head” because it isn’t that I can’t do some things but, I will surely pay for them the next morning or later in the day. It just doesn’t make sense. It’s like I can feel like I’m gonna have a break from the pain and then BANG - NOT! So I do understand how others can see this as all in my head.I’m started to think maybe it is! Can I lift 20 lbs? Damn right I can. But will I be in any shape tomorrow to do it again? Probably not. But that isn’t always true. I just can’t seem to find the trigger. Whether it be what I ate, what I lifted, what I drank, what I said, how I was thinking, how I sat, if I got too little sleep, not enough sleep. What makes a bad day? I am so baffled! Frustrating for SURE… And why is it when you tell someone the reason you are limping is because you have fibromyalgia, they all say they know someone who has or HAD it? HAD IT? Did it miraculously go away? If so - please tell me so I can take what they are taking because I’m ready for it to GO AWAY!

Sandi. Thanks so much. I often wonder if I am just losing it. My very few “good days” lately I feel so much guilt. They are coming around a lot less lately. But when I have that good day, I think OMG. Am I faking this. Am I crazy? But low and behold - I get a reminder that yes - this is real and I am in pain. I know I have so much to be thankful for Especially when I read about others here that have full time nurses taking care of them. How can I possibly complain? I am under a ton of stress right now so if I wasn’t would I feel better? Do I need to pretend to not feel well on those days I do so others don’t talk behind my back and say she is making this up? I truly think I am going nuts! Ugh!

Hahaha, yeah, they HAD it??? Suuuuuuuuureeeely not. Nope, it doesn't go away, as far as I know. Some people's might go into remission. Most of us are just stuck with it.

And KVH, what you're experiencing is classic symptoms of fibro. I've read some research about it and our GENES temporarily change after exercise, causing us to be in pain for several days afterwards. And not only that, but the mitochondria in our cells (the area that is responsible for converting nutrients into fuel) is also affected. "Some cells in the body have more mitochondria than others. Muscle cells have the most, because of the heavy energy demands of working muscles. Researchers have determined that fibromyalgia and CMP sufferers have abnormal mitochondrial function, possibly because the membranes of the mitochondria have been compromised, and electrolyte concentrations inside and outside the membrane have been disturbed. Ask a sufferer to describe what his or her muscles feel like, and the response will indicate severe muscle fatigue, tender points, trigger points, lumps, and masses. Muscle cells don’t oxygenate as they should, and exercise feels very strange and nonproductive." I found this info at a very interesting site that explores the possible causes of fibro:

My fibro also settled in my lower back/hips and was awful. I also had arthritis there and just had a procedure done to cauterize some of the nerves in my back. I think it is helping my back and hip pain some. But let me tell you, it's an extremely painful procedure AFTERWARDS. I felt like I was in the worst flare ever for 3 weeks. But now the pain seems to be receding. It might be worth asking your doctor about. I truly hope you can find a way to lessen the pain because I know it is awful.

Sandi, I don't know how you do it. You must be one STRONG woman to cope with all of that. And to still do a good job, regardless of all of the pain, fog and headaches. And yet, what is your reward? More fibro!!! It sure as heck isn't fair, is it?

I think it's an EXCELLENT idea for you to see a counselor and try to find ways/places where you can cut back on your stress. You WILL feel some better once you manage to do that. Of course, it doesn't mean that the fibro will go away but I'm willing to bet that the fog will lessen and you may have fewer days of pain. Stress is just a killer for us.

Please keep us updated on how you're doing with your counseling.

Dear KVH,

You know, this is so elusive that it is really hard to know what to expect from one moment to the next much less down the road. I know that getting the right team of Doctors can mean so much to us, and this should include exams, questionnaires, bloodwork, x-rays...

According to my Rheumatologist, my fibro was brought on by a series of car accidents and a genetic predisposition to autoimmune disease. My grandmother had Psoriatic Arthritis, and this is my main ailment, the chronic pain from it caused the Fibro. So treating the arthritis, helps the fibro.

There is page after page of amazing info and wonderful stories on this site, the friendship and support are wonderful here, but you also have to find your Doctors, if you need to, keep looking, in the meantime, we are here for you!

Don't give up! We care!



KVH, I have to say you describe exactly how I feel, I don’t think I could get it out as well as you have in this post. I am wondering the same thing, but we have to have hope that it should get better and not worse, having said that I do feel my fibro is worse, although sometimes I feel it’s worse, but I have a better Handle on it at least I’d like to think I do. I am also baffled, frustrated and ready for it to GO AWAY !!! My lower back pain is with out a doubt worse and I keep trying to understand why ? I have been home not working for 3 months and my back is worse & my over all pain and fatique is not better, I’m so disappointed, I thought not working I would be better than I am. Just once I’d like to open my eyes in the morning and not feel like I’ve been run over by a train. Just wanted to thank you for your post, it made me feel not so alone