HealingWell
Search Close Search
☰

Is Fibro a Progressive Illness?

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/20/2015 3:23 PM (GMT 0)
There have been some concerns about fibro being a progressive illness. It isn't a progressive illness. Some illnesses are progressive. You get worse and worse and never better and can become totally debilitated and die from a progressive illness. This doesn't happen with fibro. We may hurt, have difficulty doing things, but no joints, organs, etc. are being damaged and fibromyalgia is not a fatal illness.

This statement is taken from the National Institutes of Health site.

Will Fibromyalgia Get Better With Time?

Fibromyalgia is a chronic condition, meaning it lasts a long time—possibly a lifetime. However, it may be comforting to know that fibromyalgia is not a progressive disease. It is never fatal, and it will not cause damage to the joints, muscles, or internal organs. In many people, the condition does improve over time.

I hope this clarifies the difference between a progressive illness and a non-progressive illness.

If you find you are really getting worse and worse, please see your doctor. You could have developed something else along with fibro or even, perhaps, been misdiagnosed. Fibromyalgia isn't an easy illness to diagnose. Too many symptoms are like other illnesses and there is no good test for fibro.

Sherrine
Posted 4/20/2015 7:25 PM (GMT 0)
The only way I can think of that fibro could be "progressive" is if you don't slow down and let your body rest and heal. If you keep going, going, going, then fibro symptoms will get worse.
Posted 4/20/2015 8:14 PM (GMT 0)
Sherrine, I am thankful that this condition is not fatal. But it's hard to manage a condition when there is so much unknown and still being researched about it.

I found the link below on the fibro 101 and maybe I am totally misunderstanding what I read. Could you interpret what it is talking about below from the link:

Q: That would tend to confirm that fibromyalgia pain is real, not imagined.

A: The other thing that’s sobering is that imaging studies of patients show brain atrophy in regions that are involved in pain processing, suggesting that if you have chronic pain syndromes too long, you get permanent changes in brain structure. Early diagnosis and treatment may be very important.

http://www.nytimes.com/ref/health/healthguide/esn-fibromyalgia-expert.html
Posted 4/21/2015 12:52 AM (GMT 0)
Hi Purple, I haven't been on the site much lately trying to deal with my daughters headaches but I wanted you to know I read a couple of your posts. I've been praying for you and sending you positive thoughts. I hope you're feeling better. Sorry Sherrine I didn't mean to high jack your thread.
Posted 4/21/2015 2:01 AM (GMT 0)
I understand
The, not progressive ,definition, but chronic pain over the long haul surely is wearing and has an impact, that seems more over time.

So science, and the way we feel with it , may be at odds..

But most with fibro , also have other health concerns , so its probably hard to always know , what symptoms, go with what..
Posted 4/21/2015 3:33 AM (GMT 0)
Hi Sherrine,

I wondered if you could give your opinion on something I read yesterday.

Here is the link:

http://www.fmnetnews.com/fibro-basics/fibromyalgia-faqs#10

(19. Does fibromyalgia get worse over time?

Studies show that roughly 25% of patients get worse over time, but another 25% get better. Some patients may be likely to improve because they have a good doctor willing to work with them to find which therapies they respond to. Also, as people age, other medical conditions can aggravate the symptoms of fibromyalgia, so it is imperative that patients seek aggressive treatment for age-related conditions, such as arthritis. A preventive medicine program with maintenance exercises and a healthy diet may prove worth while.)

Could 'progressive' mean that the disease will not cause physical damage that leads to death? But, that the disease/pain can increase/decrease over the years? I've read of so many testimonies where people fluctuate in their pain levels to the point that some are completely immobilized. They were not immobilized when Fibro began. The pain/disability has increased. Is that different than progressing?
Posted 4/21/2015 11:15 AM (GMT 0)
Grammy, yes, the pain can increase and decrease over the years. I could barely walk three years ago because of increased pain...which was added because I developed another health problem too. I was in abject misery and needed two canes to just walk to the bathroom. I was quite concerned because I thought I was going to have to sell my home and move into assisted living. All that has changed and I haven't felt this good in many years!

See...I didn't get worse and worse. I'm so much better now than I was three years ago. My doctor works with me plus I find things that help me. Plus, it wasn't just fibro causing this horrendous pain for me. I got checked out again and they discovered ankylosing spondylitis, which my rheumy thinks I've had a very long time.

Purple Lynx, Dr. Clauw was talking about all chronic pain patients...not just fibromyalgia patients. I think this means if we don't do things to help alleviate the pain, there could possibly be changes in our brain that might keep the volume of the pain turned up.

I know fibro pain waxes and wanes. I know I will have good and bad times. I've had this illness for 28 years. If it was progressive I'd be in a heap of trouble right now. Instead I feel quite good! I also don't think about things like this. I plan on every day being a good day and most of the time it is. I want to enjoy life and not think about illness what "could" happen down the road. I'm happy to have today to enjoy.

Sherrine
Posted 4/21/2015 8:53 PM (GMT 0)
Don't forget, we age over time and things become less tolerable...

When I first got fibro, I was in bed from pain and fatigue for two years. So I feel like since I am up most of the time now, I have not progressed. But my arthritis has gotten worse and other things.

Hugs, Karen...
Posted 4/21/2015 9:29 PM (GMT 0)
Gee, Karen. I don't age. devil

Sherrine
Posted 4/21/2015 11:40 PM (GMT 0)
Wish I could say that Sherrine. But if we are the way we feel, mentally I am about 12. Ha!!!

Have a good evening...

Hugs, Karen...
Posted 4/22/2015 2:25 AM (GMT 0)
This is an awesome thread and I hope it helps bring peace of mind to some of our members.

:-) :-) Michael
Posted 4/22/2015 2:52 AM (GMT 0)
I know that there is a change in our pain receptors, or so research is starting to point towards to this as a probable cause. I also know that all research is very early and will continue to change. Different meds help different fibro peers. On a personal note, I wax and wane based on many social, psycho and environmental factors, but I do not progress. I have had fibro for fifteen years. I learned to keep a diary and tried many treatments to find what helped and what hurt. Some days, weeks or years are better than others. Knowing what makes me hurt allows me choices and preparation.
I wake up each day with a positive plan from the night before. If I can't acheive it, I do it the next day. Over time other issues have occured and I have needed assistance from my drs to add it to my personal list of what makes me well.
I am not progressing in illness, only awareness and positive life goals for me :)
Blessings
Posted 4/22/2015 10:59 AM (GMT 0)
Very well said inspiration.
Posted 5/4/2015 4:23 AM (GMT 0)
I'm not sure I agree with this statement. Chronic pain affects every aspect of your health. It changes your brain. So how can they say its not progressive? Pain effects your blood pressure too. I'm not buying it sorry they still have not got this disease right yet! nono
Posted 5/5/2015 3:06 AM (GMT 0)
Agree with you kcblues.

If doctors don't know what causes it or what the mechanism is behind Fibro, how can they claim it isn't progressive! That's just silly and poor analytical skills to say such a thing. How does one know if there isn't a damage to the nervous system, or muscle tissue? I want proof. There just isn't any.

People keep saying they can't work anymore because it has gotten so bad. Well, that's progressive. Just because it isn't fatal, doesn't mean it isn't progressive.

Mine is progressing. And that's that. Before, my knees haven't been bothering. Now they are killing me. It's progressing into my knees. I'm more exhausted. I'm handling less and less work. It's progressing.

Tango
Posted 5/5/2015 3:14 AM (GMT 0)
Its a very fine line here in the definition..😊

And its ok if we have differing opinions on this.

For now the science says not progressive and some days our bodies disagree😊

In a flare it messes with our mindsets on the topic also..

Remeber , there are still docs who do not even think its real..lol
Posted 5/5/2015 3:22 AM (GMT 0)
Not real! Yea, hahaha!

I'm hoping my doctor (and I'm moving to Cleveland so I'll be looking into the Cleveland Clinic) will look into some more autoimmune disorders in case I'm misdiagnosed, or more like, Fibromyalgia was the first diagnosis before uncovering another. I don't think I should be getting worse, but I am. In spite of working less and being more careful about pacing, getting massages, etc.
Posted 5/5/2015 2:39 PM (GMT 0)
I am getting worse too. I was diagnosed about 6 years ago. I have seen progression with symptoms from when I was first diagnosed. I no longer work. I worked the first 3 years. My nerve pain has spread to more areas of my body. My flares are longer more often and more painful . I can easily measure this by my daily functions and activities . There seemed to be some scientific evidence that chronic pain causes damage to the brain.
Posted 5/7/2015 9:57 PM (GMT 0)
I am getting worse, but I have osteoarthritis and psoariatic arthritis as well.
Posted 5/8/2015 5:57 AM (GMT 0)
I think the argument would be more about the definition of progressive. If you look around there is always someone who supports any opinion. The other thing is that there are progressive conditions that cause worsening and are kissing cousins with Fibro. I have CRPS, for instance which is progressive - particularly if untreated. I have lost 35-40%use of my right arm. It is probably because of CRPS, but the Fibro reacts to it. I can't finish very simple physical therapy reps within it the muscles bunching in little. Clumps. I recently heard it might include myofascial pain syndrome.

Doctors give us their best knowledge to date. They still don't know how all these things interact together in the playground of your central nervous system.

I try to work with the info that I have while keeping open thoughts for changes.
Posted 5/8/2015 7:45 PM (GMT 0)
You know, I actually plopped on the ground this week and cried like a little girl to my husband, sobbing, that I don't think I have actually gotten any better than when I was diagnosed. That I keep trying new things and with that new regimen comes hope. But then it inevitably fails and I flare for weeks. I keep cycling in and out of treatment and it's...exhausting on the soul. I think this exhaustion feels progressive because our hope gets smaller and smaller and we become more aware of how everything is much the same, versus focusing on the positive. So maybe not progressive physically, but can definitely be mentally progressive which in turn affects the physical. I dunno, it's been a rough week and I'm looking at at least another week of super high job stress.

And now I'm crying again. I want a bumper sticker that says [bleep] fibro. Because, really.

Post Edited (AnnaBananna) : 5/8/2015 1:48:05 PM (GMT-6)

Posted 5/8/2015 8:05 PM (GMT 0)
Thanks for that Sherrine. It is good to know that This Mess is not progressive, even though I am getting worse ): (: Which way is smilie? Ljm, I'm a high percentage disabled service connected Navy veteran and go to VA doctors. My main doctor, I love her (!), but she doesn't seem to think much of The Mess (The/This Mess is my way of saying fibromyalgia) being real. She just doesn't know much about it. It was a nurse practitioner who put me on to The Mess about 4 years ago. Bless her heart!

Anna, being a man, I don't cry. Us geezer men don't cry. We want to, but just canno'. Instead, I get depressed. Thank God for this forum!
Posted 5/8/2015 9:02 PM (GMT 0)
Aww, buddy, you can still use my shoulder to "depress" on. :)

I SINCERELY DONT UNDERSTAND how people can not "believe" in fibro. Did people not "believe" in cancer, TMJ, migraines before? Why did fibro get the hate? (I'm thinking misogyny, but am open to other theories) It blows my mind that this is still suggested in 2015. It's been around since, at least, the 1800's. Shoot, there's probably cave drawings of a group of women (and one or two men!) lounging around with big X's on their eyes and thought bubbles that say 'ouch' in the native tongue.

Anywhoodle, carry on. .
Posted 5/15/2015 6:44 AM (GMT 0)

tangodancer101 said...
Agree with you kcblues.

If doctors don't know what causes it or what the mechanism is behind Fibro, how can they claim it isn't progressive! That's just silly and poor analytical skills to say such a thing. How does one know if there isn't a damage to the nervous system, or muscle tissue? I want proof. There just isn't any.

People keep saying they can't work anymore because it has gotten so bad. Well, that's progressive. Just because it isn't fatal, doesn't mean it isn't progressive.

Mine is progressing. And that's that. Before, my knees haven't been bothering. Now they are killing me. It's progressing into my knees. I'm more exhausted. I'm handling less and less work. It's progressing.

Tango

I agree with kcblues as well. I have been battling this illness for many years & I am now far worse than I used to be. Surely that's progression??? Tango Dancer, my knees also are NOW giving me pain - I didn't have that pain before. The fatigue and the pain have increased to the stage that I am now virtually bedridden - it wasn't as bad a few years back as it is now - I coped back then but now I have almost zero quality of life. The medical fraternity know nothing about this condition so how can they say what will or will not happen as time goes by.

By the way, can anyone please tell me how to UN ignore a contributor- I accidentally clicked the wrong icon - tsk tsk - blame it on the "Brain Fog" :-)
Posted 5/15/2015 6:57 AM (GMT 0)

asdf23 said...
My fibro got worse with time when i eat like normal people do, 3 or 2 times a day, i almost become disabled then, i practiced many different diets and found one which works best for me.

Hi asdf23 - will you please tell us which diet has helped you with FM?? My diet is gluten free & low lactose plus I have to be very careful of a number of other foods that give me problems - I still have problems so would love to know which diet is helping you. I realise it may not work for me but would love to give it a try.
✚ New Topic ✚ Reply
12