Since I was diagnosed in dec 2012 my regular daily pain has gone from barely noticeable to almost unbearable. And no medication seems to work other than strong narcotics. Is there anyone else who’s fibro just seems to get worse and flare ups become more often? I go to therapy and am doing everything I can to control it, but I can’t seem to figure anything out.
I was on the highest doses of Lyrica anf Cymbalta and I had no improvement so I was told to ween off and stop. I have told them and being in the military its hard to get people to take you seriously, especially since on the outside I appear to be a healthy 28 year old female.Thank you. It is nice to know I am not the only one whose pain seems to be getting worse. With no way to "prove" it, its hard to keep insisting about it.
Very good question…I have been wondering the same thing. My pain woke me up at 4 a.m. today and I was laying there trying to remember when it all started to be a “daily” thing to deal with. Used to be getting hit by the fibro bus was the worst thing…now it’s constant daily pain and not as much bus. Go figure. I too failed the fibro drugs and am now on a narcotic. Sadly I’m going to have to ask to increase the dosage becuse it’s not working like before. Great…
I was in PT for a couple of months…hot pool exercises with the treadmill in the pool also. Not long ago I was a power walker and I’ve had to lay that down completely. The hot water exercise was actually aggravating my fibro and increasing my migraines so I stopped going. Initially of course the heat of the water on my muscles felt sooooo wonderful.
I wish you all the best. xoxoxox
Thank you everyone. I am very sorry you guys are on the same page as I am. It helps me to know I am not the only one who feels like this and that its not "in my head."
Hi , I was diagnosed two years ago , sometimes I feel im in a constant flare , then have a couple of managable days !
iam attending cbt clinic and trying to learn how to pace myself , no matter what I do I pay for it .
big hugs to everyone xxxx
Cymbals made my pain worse, not sure why. I tried it twice and both times made me feel like I had been hit with a bat from head to toe.
Cymbalta stupid autocorrect
I believe it can get worse for sure. When I was first diagnosed it was not a big deal, now I can’t stand it! Every day all the time!
I don't know if there is a way to control the pain. For me there are to many triggers that set of flares than I can find. And I don't want to be sitting on the couch all day. I find that I have dealt with pain two main ways, either rest, warm baths, massages, when I am able to have the time and money to do them, but when I am on my feet and away from home for to long, I find that, the more I hurt the faster I go at trying to get done what I am out trying to complete so I can get done quicker so I can hurry home to rest, bath, and or look for extra dollars for the massage therapist.
I'm not working and I'm just not keeping a schedule. I have no small children, and no grandchildren. My sleep schedule is normal, I don't sleep much at all unless I take a muscle relaxer. I want so badly to start exercising more but that will surely cause more migraine headaches than I want to put up with, and my back and neck will also get a migraine. So I'm still looking for clues that will lead me to answer the question, will I ever get control of my body back? or will it continue to get worse? Earlier today, I was in a conversation about how far a person could run for. And many runners who enter a race decide on how far they think in their minds they can go. So for a runner to pick which race to enter, 5k, 13k, or a 26k, is more than likely to pick how far he or she thinks they can go. I don't know if this line of thinking is true with those who have fibromyalgia. I want to think that I can run the 26k, but in reality I the reason I'm not in the race is because I can't get around the block without the pain becoming unbearable before the second block. I used to run a 5k daily, now I can't get two blocks. I'm hoping this medication will start working because I want so badly to get back to my 5k daily run.
Audrey
Hi An1m and welcome!
In a nutshell, yep, fibro does seem to be progressive (gets worse over time.) I've been on this board for about 2 years now, or heck, maybe closer to 3, and it seems like everyone on here has gotten progressively worse. However, it's concerning that nothing has helped you with your pain. I would ask to see a rheumotologist and be tested for auto-immune illnesses, since they seem to come along with having fibro, in most cases. It's possible that you have something more causing the pain. For instance, my worst pain is in my back. Come to find out that it's osteoarthritis causing the pain and fibro seems to be amplifying it. I now get treatment that burns the nerve so that I don't feel as much pain back there for quite a few months. If you know what's causing the pain, sometimes it can help to alleviate it. In your case, I'd want to rule other causes out, if possible.
Please keep on trying to get help. You should not have to suffer like this, with no one helping you on your side. I am willing to bet that you do have other issues that are causing your fibro to be even worse.
Audrey, if you can't afford the massage, perhaps there is a massage school in your town. They offer less expensive services. And I'm also a member of some on-line coupon thing that constantly offers less expensive massages in my town. I thought I'd let you know about these options. I just wish I could remember the name of the on-line coupon service!
I think if you push past your limit there is a flare that takes some time to get back to base line. If you push past your limit all the time, instead of healing, the FM goes into a spiral. I take about 2 days to get back to "normal". When I was first diagnosed it was 3 or 4 days. Right now, I listen to my body and when it starts to "grip" I curtail all weight bearing activity. That is, I just go lay down and thank God I have the ability to do so. I was told I was disabled by my doctor and it was quite a reckoning Now I just do what I can. If I overdo it, I pay by worsening pain. I just learned something very interesting: I couldn't do yogo, and I used to teach, because it made the FM worse. I read in Devstars pamphlet for clinicians that a stretch should be done once, multiple times a day. In yoga, you do each pose 2 or preferably 3 times. And it was making the FM flare. Since I read that, I've been doing a 1x stretch and it actually feels better. The only thing to do for the FM, is to NOT DO. Don't over do activity. For me it digs me into a pit that only time and immobility helps.
Hi An1m4L02,
Have you considered food allergies or sensitivities? I noticed that when I ate wheat/gluten products my symptoms seemed to be worse. I was far more fatigued with eating these products.
FM and CFS are definitely progressive, no doubt about it.
I know I’m new to this wonderful support system and wealth of knowledge but in dealing with this myself, I have noticed it can get worse with time. I also agree that if we learn to listen to our “warning signs” of us pushing to hard, we recognize them easier as time goes on.
Hi An1. Yes, I do think fibro is progressive for many (most?) of us. It also seems that many times it goes on to develop into an autoimmune illness, like lupus. Not always, mind you, but it's something to bear in mind. Maybe you could ask your doctor for tests for autoimmune illnesses, even if you had them taken several years ago. Also, have you tried Lyrica or Cymbalta or Savilla? These are the drugs most commonly given for fibro. I take Lyrica and it helps with the nerve pain, which is 75 percent of mine, it seems. I'm sorry if you've tried them and they haven't worked.
Have you tried massage? Accupuncture? Tai chi? These all are supposed to help somewhat. I used to get massages and they'd help for a few days. Oh and pain management doctors. And cortisone shots to a joint. I get them in my knees and they've helped immeasurably.
I sincerely hope you find some relief, as we all know how hard it is to function with great pain.
Yes, Mary that's very true; it's important to listen to the "warning signs" of our illness before we end up in a puddle of tears on the floor. And sometimes it's extremely easy to go from kinda sorta coping to that puddle of tears so we have to put the brakes on ASAP before it's too late and the pain has gone insane.
I've also found that making sure to take my meds every day without fail at around the same time of day saves me from a lot of pain and grief.
Mary said:
I know I'm new to this wonderful support system and wealth of knowledge but in dealing with this myself, I have noticed it can get worse with time. I also agree that if we learn to listen to our "warning signs" of us pushing to hard, we recognize them easier as time goes on.