Mine has definetly gotten worse. Everytime I have had physical or major emotional trauma, it has gotten worse, and it has not gone back to the previous level. When I was first diagnosed my doctor told me it is not considered progressive, but that only means it does not follow a prescribed route and end up with everybody who has it being in the same condition, it doesn't mean it doesn't get worse. I think most of the info I've read indicates that it has been present for much longer that it has been diagnosed in most of us, and it is only after it has reached a pretty bad stage that we finally found out what it was. However, not everyone gets to the same point. I think a lot depends on your age, other medical conditions, how well you take care of yourself, as far as your diet, regularly taking your meds, etc., and also how well you handle stress. Most of us do seem to have a list of other conditions, not just the ones connected to fibro, so I'm sure that makes a difference also.

Hi Tara,

I don't know about everyone else, but mine has defineltely gotten worse, especially over the last year. After I was dx'd I actually had small flares, and then went almost a year without any problems. But when it kicked back in , it was back with a vengeance.

If you have pain in your neck and back, I bet you also have chronic myofascial pain syndrome [CMP]. If so, it's quite easy to treat and control with trigger point massage.

If you aren't familar with CMP, it's when your muscles get knots in them that refer pain elsewhere. The knots, known as trigger points have to be deactivated or broken up for the pain to subside for long.

That's where trigger point massage comes in. You can easily learn to do it on yourself and keep your pain under control. I use a two-headed percussion massager and the book featured at triggerpoint.com as a guide. It's a lot of work, but I've gone from being in absolute agony to being almost pain-free the majority of the time.

I had the pain in my neck, shoulders and a headache in the lower back of my head that felt like my skull was fractured in a million pieces. Nothing touched that headache and it would last for months on end. I had the thing for probably 10 years before finding out that it was caused by a trigger point in one of the muscles in my neck. It took me less than 15 minutes to break it up and it hasn't returned for long in over two years.

Headaches stem from TPs in the neck, shoulders and between the shoulder blades.

Here are some articles with diagrams that should help you:

http://www.fibrodoc.org/headache.htm

http://round-earth.com/HeadPainIntro.html My headache stemmed from the sternocleidomastoid.

http://round-earth.com/ShoulderPainIntro.html Trigger points in the upper back wreck all sorts of havoc in the rest of the body as they often have satellite trigger points that can't be broken up until they are.

Hope you feel better and this helps.

i think it depends on the person and what all they have with it and what your stress levels are.. everything is a factor .. we all have bad days and worse days.. some peoplehave more severe cases and it could be from something others dont have .. its a live and learn thing we never know from day to day what the answer is...***hugs***

I've heard that fibro has stages but when I tried to research it for myself, I couldn't find any defined stages of fibro.

My rheumy says you either have it or you don't, like being pregnant. I'm not sure I agree with that. I know I started hurting in my ankles, then my feet and ankels, then my hands, arms, etc.

I just brushed it off as delayed pain from my wreck and having a larger arse...lol.

Well, weight loss didn't help matters much, other than the fact that I could move easier. It still hurt like Hell.

I have days where the thought of moving from bed just sends me into orbit. I lost a lot of absence time this year because of it.

I think I've reached the point where I can manage the pain better. I don't feel any better, but maybe by pain tolerance has increased.

Also, maybe the longer you are in constant pain, the more "used to it" you become. At least that's the case for me.

mine was pretty bad by the time I was diagnosed - I had a flair that lasted 4 months or more. Tolerance to pain meds is a problem for many too - no matter how much you use, it doesn't seem to help. I have been thru a lot of med changes and increases over the past 5 years - I hope it levels off so I can just maintain for a while!

Thank you for your replies and I truly hope someday there is something that can be done to help us all. Only time will tell though through research and compassion.

Kabella, I too have tried to research fibro. The problem is that I look at different websites and it does not even list all of the symptoms that we do have. It is hard to research when they don't even have all of our symptoms. We can keep trying though. All good things things come to those who wait.

Seagulley, thank you so much for the info. Could you please tell me more about CMP. I have heard that a lot on this website. I have looked it up but it is not comparable to true experience from someone who has it.

Lagybug-I'm sorry yours has gotten worse. I truly believe someday we will be rid of pain through research and study of fibro. We have to believe that.

Laurie- Everyone who has answered this has said it has gotten worse and I truly believe that it does. Mine has in just the past 2 years. That proves that doctors are yet to truly know about fibro completely.

Sandymooners- There are so many factors that affect fibro. I could probably blow my nose and it would cause a flare. LOL! I just wish they would figure all this out really soon to give us some relief.

Pagan- I can't believe the docs don't realize that we become immune to meds after so long. Then, I have heard everyone has a hard time getting other meds because the docs think they are abusing the meds. It's crazy. I hope your pain levels off real soon so you can control some of the pain and are able to tolerate it until someone can figure this horrible fibro out.


To all of you- I hope that you are truly free of pain or at least that it will be bearable for you. Thank you again.

Everything I have read labels FM as progressive, especially if untreated. My rheumatologist has given me the same advice he would his RA patients for controlling the progression: keep moving, lose as much excess weight as possible, reduce stress, look after your general physical and mental health, and find ways to work around any disability it may cause.

Tara...the pain has definately gotten worse...
most dr.s will tell you that FM is not progressive...most FM'ers will tell you it IS..
I started out just with achey flu like symptoms OFF and ON...these have progressed to every minute of everydamnday pain...sometimes alot worse, but Always There...
and with the Onset of new Symtoms everytime my life has been disrupted by Stress..big stressors brought on new symptoms...little everyday stressors inflame my old symptoms...I have been almost to the point of not being able to crawl Out of my bed...
I to have that gawd awful neck and shoulder pain...I have found some relief thru aqua Therapy...or better known as Pool therapy...have only been at it now for 2 weeks...but in those 2 weeks I have not had a headache...and I suffer damn near daily from them...he is getting my muscles to...relax...it has increased my fatigue...but he assures me that if I just stick with it that the fatigue will back off some again as I get my body strengthend...I am giveing this all I have cause I truely believe this is my last shot at liveing any kind of life...i am on No meds as my body seems to have developed all kinds of sensativity...cannot even have a beer or a glass of wine anymore...sigh...
exercise is SO very Important...but you Cannot do the ones that you are used to doing...seek out a Physical Therapist if you can...have your Dr. refer you to one so the ins. will pick it up...so far this has been the most helpful to me...I pray you find what works best for you so you can live as pain free as possible !!

My pain level is the best when it is low say 3 or 4 and when it gets to be a 8, 9, or a 10, I need to take a Darvocet or my muscle relaxer and just turn on the electric blanket and take a nap for about two hours or so.

Mine's got worse over the years. I go through periods (years) of taking medication for the pain but the side effects from the meds are not worth it, so I quit.

I have no more pain free days...just days of less or more pain. I did in the beginning but no more. My pain varies with my work load, my stress level, etc. I was told that I would "outgrow it"...hahaha I don't know of anyone that "used" to have FM. DS has been good for me...just knowing that others are in the same boat I am helps me get through the day. And I am blessed in so many ways, which I realize when I read some of these journals. Sometimes I think, what right have I got to complain??

I spent the better part of two years in bed with Fibro. I had to be dressed, bathed, driven to doctor's appointments, etc. My PJ's became one of my best friends. I can't recall any part of my body being pain free, even my hair hurt.

Right now, I'm much better and my depression is on the wane. I know at some point the Fibro is going to come back with a vengeance and knock me off my feet again. But, I'm much better prepared for that than now than I was when it first hit full force.

I know I've suffered different degrees of this horrible disease and I also know I'm not alone, others have been there too.

I'm sure this isn't encouraging for you but we all do what we can to make our lives as pain free as possible and take it one day at a time.

Dee

Tara, for the past ten years, I would say mine has been like a roller coaster ride. It was really bad for the first couple to three years and then waned a bit...but I was on pain meds and they were finally the right ones!!
I think stopping work helped me because when I'm stressed, my fibro ALWAYS gets worse.

I have yet to meet someone who says they had fibro and were totally cured. That doesn't mean that these people don't exist. I just have not met anyone like that.

Not trying to depress you.

On the other hand, I think I've improved in that I know how to handle my life and myself a bit better to prevent the REALLY bad pain.

Love and peace,
Morus

taralynn:

My experience with CMP is that that's the main source of my pain. My fibro symptoms are primary brain fog, cognitive dysfunction and just generally feeling sickly, but I don't have the morning stiffness or anything like that.

The myofascial pain has manifested itself in every part of my body from raging headaches, eye strain, pain in my teeth to burning in my feet and numbness in my left hip, leg and foot. I've also had times when it felt like I had arthritis in my hands, wrists and elbows and even now, I have a repetative movement injury on my left thumb that is really just trigger points that need constant attention. So long as I massage them [they're way up in the bend in my elbow and on the out side of my upper forearm], they're fine.

My former doctor told me my pain in my feet was nerve damage. Fortunately the EMG proved that it's only CMP and can be conrolled with trigger point massage. Course the neurologist didn't tell me that--I had to figure it out on my own after being misdiagnosed with asthma due to trigger points in my chest that caused breathing problems.

I guess the one thing I'd say is that if you haven't been in an accident, don't have diabetes or anything like that, don't let a doctor convince you your pain is caused by nerve damage until he's done an EMG.

My feet hurt soooo bad it was all I could do to sleep. I had to slather them up with Capzasin HB cream every time I got up to go to the bathroom during the night to keep the pain down enough to sleep. I also wore compression bandages on my feet unless I had on shoes.

I had a headache in the back of my skull that felt like someone had slammed a cinder block into my head and shattered my skull in a thousand pieces. This headache lasted for years on end with only a few days here and there that I wasn't in agony. Surprisingly, the offending trigger point in my neck took about 15 minutes to break up and now I seldom have it. If I do, I know where to massage and can usually get it under control within a day or two. I can't tell you how wonderful it is not to feel like you have a fractured skull!!!

The problem with CMP is that doctors know it goes hand-in-hand with fibro but they don't tell us. Had I known about it, I would have been spared untold hours of misery. I'm just grateful I learned about it when I did and encourage you to take the time to look into it in case you have it as well.