progressive or not ?

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Regular Member

Date Joined Oct 2008
Total Posts : 86
   Posted 11/20/2008 5:42 PM (GMT -7)   
I have been wanting to ask some of you that have been dealing with this for a number of years if you have found your symptoms worsen at all over the years. I know that Fibro is not supposed to be a progressive condition, but I have read some material that indicates otherwise. could you please share your experiences with me? Thanks! Hope everyone had a good day.
Gentle Hugs,
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Regular Member

Date Joined Nov 2008
Total Posts : 92
   Posted 11/20/2008 8:24 PM (GMT -7)   
I would say that its a little worse than it was in the beggining. I must say that the flare up last longer and are more intense.


PS... you will never feel like you use to 100% (my opinion), but when the flare is over I feel about 85% like I use to - with limitations.

Again this is only my experience.

Regular Member

Date Joined Oct 2008
Total Posts : 111
   Posted 11/20/2008 9:26 PM (GMT -7)   
I haven't had FM for a whole year yet, but I definitely think it has gotten worse over that time. I kind of figure that I'm still in an adjustment period though and maybe it'll level out after awhile.

Diagnosed with arachnoid cysts February 2002, fibromyalgia February 2008.
No meds right now, just Vitamin D supplements and ibuprofen for headaches.

Traveling to the Cleveland Clinic November 19th!!! Maybe this will finally be a good neurologist!

Sera Smiles
Veteran Member

Date Joined Nov 2006
Total Posts : 671
   Posted 11/21/2008 2:07 AM (GMT -7)   
I have been told repeatedly two things about FM- it is not progressive, and its not an auto immune disorder. My experiences, years of test results, my research, my instincts- all of these tell me these statements are WRONG. Perhaps, the fact that pain combined with decreased flexibility and decreased motivation that sometimes goes along with increased depression and anxiety, maybe this 'perfect storm' moves FM toward 'progressive'. Still- I believe that without all that, FM does progress in a negative sense.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17557
   Posted 11/21/2008 7:58 AM (GMT -7)   
I have had fibro for 21 years and I am a little worse than when I started.  I also agree with Sera...I think it could be autoimmune also.
Forum Moderator/ Fibromyalgia
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God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 11/21/2008 9:21 AM (GMT -7)   
I remember having soem of these symptoms about 3 years ago, then they left. This May symptoms came back, worse, and then some new ones. Everything before was vague, with some pain. It's definitely worse now, but I have gotten better since this summer.
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 11/21/2008 9:57 AM (GMT -7)   
I was dxd five years ago and it stayed pretty much the same til almost 19 months ago when our oldest grandson was killed in Iraq and it has escalated so much since and continues to. I think age, I'm 58, and profound stress plays a role in how fibro affects you. I do believe it loves vulnerable bodies to pray on. Fibro is a bully that kicks you when your down.
My rheumy made a reference to fibro and other auto immune disorders and I forgot to ask him if he believes fibro is an auto immune disorder. My memory is about 2 seconds long and if I don't interrupt people and ask a question at the time I forget. I will write that on my list for next visit.
It is hard having a disorder that we know so little about, I hope they find answers for us soon.
luv and hugs
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Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 11/21/2008 10:11 AM (GMT -7)   
My fibro is absolutely progressive.  I went for 7 years with hardly any issues besides having all the tender points.  After my anyphalactic med allergy crisis in '07, my fibro has been an absolute monster.  The pain is unbearable sometimes, fatigue, brain fog, sinus issues, you name it, I have it.  I don't believe for one second that it isn't progressive.  I'm living proof that it is!  I also believe it is likely autoimmune.  When it is diagnosed with lupus or other autoimmune diseases, it just makes sense that it would be one too, right?
Much more research needs to be done on Fibro.  I feel like we've been left in the cold as far as any new medical options or research. 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Oct 2008
Total Posts : 86
   Posted 11/21/2008 2:20 PM (GMT -7)   
Thanks for your input everyone. My doctor has told me that it is not progressive, but I have been reading otherwise and from what you girls are saying, the material could be accurate. Marlee, so sorry to hear bout your grandson. I just can't imagine. I know that there are many circumstances that contribute to our symptoms such as stress and weather, but I get so frustrated with not knowing what to believe and the lack of medical professionals knowing about our condition. It just makes everything so much worse! By the time most of us get to a doctor that knows what he's doing, we are in so much pain that of course we are depressed!Then there are so many ways to treat it and so many different beliefs about it, that we are lucky if we are treated correctly but we are just so glad someone believes us, we take their word and do what they say. Well, thanks for letting me rant a little. I have done everything my doctor has told me to do, and I am just miserable and I don't know what a flare is, but I guess that is what is happening to me because of the weather. Nothing is helping. I am seeing him again Tuesday and I am ready Iwith a list too! ) because he is not a big believer in pain meds and I am on Tramado and it is just not cutting it. He called in a weeks worth of vicodin which really doesn't help my fibro pain that much so I need something else until things calm down. I am about to jump out of my sking if I could move without pain. Thanks everyone for your input. You guys really help!          
Gentle Hugs,
Cymbalta,Tramadol,Gabapentin,AmbienCR,Zonagran,Phenobarbital,Nystatin Powder
Fish oil, Vitamin E, Baby ASA, Multi-Vitamin,Berberine,Caprylic Acid,Malic Acid/magnesium

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 42068
   Posted 11/21/2008 7:10 PM (GMT -7)   
I don't want to believe that it is progressive, because I don't want to feel worse than I already do.

Let's hope that they find something to help us feel better.

Hugs to all,

  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

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