I just want to know has any one else had their symptoms gotten worse . Mine have and my doctor does not believe me. He says fibromyalgia typically does not get worse. Can anyone back me up on this?
I don't really understand it either:(. Sorry I am not much Help.
Hi Aimee. I totally believe we get worse. I am not sure if the fibro gets worse or our bodies get worse and we no longer have the tolerance for it like we used to. I know I am a totally different person then I was when I was first diagnosed seven years ago. (I didn’t even believe Fibro was real then and chose to ignore it.) At that time I worked full time. I had to rest everyday off and lose my social life but I could do it. As the years went by I needed more rest, was in more pain, etc. Instead of taking a week longer to recover from a cold or flu, like most people, it was two, then three weeks longer. As of two years ago I can longer work, I live on pain pills (which I despise) and am so fearful of getting a virus I hate going out in public. What I would give to be that person I was seven years ago. I thought I felt like crap then. Lol. I had no idea.
Take care…your are definitely not alone.
Melyn
I am sorry melyn your having a rough time:(
Well I believe that my fibro went away for a long time then came back out again. I had all the same symptoms 20 years ago. No one knew what to make out of it. Neither did I. I've spent all my life till now wondering what everyone missed. Then when it went away, not completely, I was exercising and eating a very healthy diet. I stopped drinking alcohol and drinking coffee. They are two big no, no's for me. But a few years ago the fibro came out of its den. It is worse now than then, but I think it is because I'm 20 years older and less tolerable of pain. Gabapentin seems to make a slight difference for me, but I can't take the pain killers, I'm to sensitive for them, but I can tolerate Flexiral. But I don't want to be addicted to meds. I only take the flexeril when I know I'm really active. The more I do physically the worse I feel. Right now my body is in a flare. I hurt all over, and yes I did have some caffine the last couple of days, and that wires me out. I'm in the middle of moving and don't have any help.
Walking is great for releiving some symptoms for a little while.
I am so sorry to hear this. That your Fibro came back and your hurting all over. I hope you get relief very soon. I am also so sorry you have no help to move:(. Try to pace your self if you can.
Thank you Janelle. 
Aimee,
Mine has gotten worse. Plus now I have stuff like asthma, twisty esophagus, and other things that I never had before the fibro. I think I did a poll on here once asking if people felt that fibro was progressive and almost everyone said yes. I think your doctor might want to re-examine his position on the matter.
I think it is how they were trained back in the day. (There is at least one fibro site out there that still claims that most fibro people GET BETTER!!!) You have to wonder, do doctors listen to what their patients are saying at times? Are they up to date on illnesses? Are they so rigid in their thinking that they refuse to revise their thinking even when more recent info is out there? I really do wonder about some doctors.
Here it is. I LOVE this (eyeroll):
http://www.uptodate.com/contents/fibromyalgia-beyond-the-basics
It is important to have realistic expectations concerning the ability to function and manage the condition over the long term. Symptoms often wax and wane over time, yet some degree of muscle pain and fatigue generally persist. Nevertheless, most people with fibromyalgia improve, and most patients lead full, active lives.
Lies, lies and more lies! And yet there it is, out on the net for poor fibro sufferers to see and believe, thinking that THEY are wrong.
You wonder are they up to date? I wonder myself don't want to get off the subject but i have an exmple. I heard that breast feeding is still good way past 1 year . It's actually more concentrated and full of antibodies and vitamins that is very beneficial for the child. Also it protects the mother from breast cancer and cervical and type 2 diabetes just to name a few. So, the longer the mom breastfeeds the more it lowers the risk for mom and is soooooo beneficial for the baby.:) Funny thing who says at least 2 years. MY Sons ped tried to tell me it isn't good any more after a year WOW! Sorry I don't agree with that their has been research to proove that it is!!!! Sorry don't mean to get off topic but this Is a good example that Doctors don't do their research. I think that they look forward to people getting sick that's more Money in there pocket so any thing that's beneficial to people staying healthy they don't want to see>:( so Sad!!!!
How long have you had it? My first couple years it spread and got worse.But after a while it will start to ease off some or your nerves simply get fried and you want hurt as bad.my first 5-7 yrs were the worst,also getting on disability really helped tremendously-maybe spelled right, maybe not-.You will have to take it moment by moment.If you can get access to a swimming pool it would help a lot.God bless Wayne
Hi Wayne. May I ask if you are receiving disability for Fibromyalgia or is it for other health issues? I have fibro, arthritis and a sleep disorder. I can no longer work and am terrified. I know the stress and worry of what to do is putting me in a constant flare. I am thinking of applying but fear the disappointment.
Take care,
Melyn
Hey Melyn
I got it for fibro.It was not reconized on the list for ssdi when i started back in early 2001 but was added around late 2002 or early 2003.I won it in sept.2003.A really GOOD attorney makes all the difference. I wound up firing my first attorney after we went to a hearing and he said not one word...I then hired daniel soloway and he built a case and won pronto..Ask around your area and find one that will do his job.If they advertise a lot they probally work on shear volume and won't work for you. Be good wayne
Thanks for the info Wayne. Glad you are feeling better. It gives me hope.
Melyn
Mine has definitely gotten worse. My symptoms came on gradually, so they’ve just added and added and intensified over the past 8 or 10 years. Also, if my doctor said their words to me, I’d have to point out to him that he said typically, which means that either there are cases where it can get worse, or he just doesn’t know what he’s talking about or how to answer that question. I’m so sick of arrogant docs who think they know everything. Half the time I go to a nurse practitioner if I can because they listen better.
Sorry I took so long getting back to this. I have been a busy lady lately. Thank you all for your input on this. It has been a great help to me. I did a little research myself on the subject. I found a couple different articles. I did a search on fibromyalgia symptoms to see what would come up. On http://health.alot.com/conditions/fibromyalgia-sypmtoms--90 it states " Symptoms of fibromyalgia can become extremely lethal if they are not correctly dealt with. Many patients confronted with the syndrome experience an intensification of symptoms over a period of time." Another article at http://www.thelearncenter.org/categories/health-medical/understanding-fibromyalgia is a more lengthily, interesting read. I can sum up some highlighted points that you might want to be aware of. It states, "Not formally recognized until fairly recently fibromyalgia is a complex condition that is made up a number of seemingly unrelated symptoms. For this reason, it is important to gather as much information on fibromyalgia as possible to ensure that you are covering all the possible treatment options." "..the cause is as yet unknown." "..the symptoms can be severe and progressive." "Although there has and continues to be, numerous research efforts into better understanding fibromyalgia, it's cause has still not been determined." " Each patient will be different and will require a different treatment approach. Also as symptoms can reduce or flare up in severity, treatments will need to be adjusted to suit the situation." It gives tips at the end of the article about helpful things to do when visiting your doctor. I find this very important to my case.
" * Write down any questions you have so you don't forget to ask them.
* Read up on some of the fibromyalgia treatments available so you know what your doctor is talking about and also you can make suggestions for them to consider.
* Keep the lines of communication open. Tell your doctor about any new symptoms or if a particular treatment is working. They will be able to help you better if they are kept informed. In the near future, researchers will hopefully be able to determine the exact causes of fibromyalgia and therefore targeted treatments."
I hope this helps some of you the way it has me. Thank you all again for your input on the subject. you are all so helpful.
Hi,
Been officially diagnosed with it for a little over a year, however suspect it has been going on much longer. Right now I have been off work on medical leave for over 6 mos. I am working with a case worker to try and find me more a more suitable job for my needs. It is possible I may look into SSI as well or possibly in place of. It all depends on where things go from here. I think I am heading in the right direction either way. More testing needs to be done for my conative abilities too as I may have some disabilities in that area that just have not been tested for yet .