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I'm confused about whether Fibro is progressive.

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Posted 12/14/2013 11:47 PM (GMT 0)
Hi all, I'm newish to Fibro. I was DX about 2 months ago. I have read here and in other places that Fibro is not progressive but I have been getting worse over the past few weeks. I am experiencing more and different types of pain. I have RA too but that is mostly under control now and I don't think it is involved. I understood progressive in illness to mean spreading and getting worse. I believe that is what is happening to me now. Can anyone shed some light on this for me. Thanks Neenaa
Posted 12/14/2013 11:56 PM (GMT 0)
Welcome!

Doctors say No to progression. I would agree. The pain does get worse, but then it gets better, too. Usually (but not always), the increase is linked to other factors, such as exertion, cold, stress, other illnesses, etc.

That is the thing about fibro. You don't like the pain you are having, wait a couple of minutes. it will be different.
Posted 12/15/2013 1:15 AM (GMT 0)
Fibromyalgia is so unpredictable. You might be in a flare right now. I know though, the first couple years of fibromyalgia was the worst for me. But I didn't have much pain relief either or any thing to help with the fatigue.

I hope that you feel better soon Neenaa,

Hugs, Karen...
Posted 12/15/2013 10:23 AM (GMT 0)
In my opinion science is an objective thing. When they say "no progerssive" they mean fibro does not cause organ damage. It`s something wrong in how our brain processes pain signals. Pain from fibro could be different or increasing and everybody of us knows very often - debilitating. However there is never an objective finding to be the case of the problem. And it is not only pain issues but fatigue, bad memory,... everybody here can write a thesis about that.
With the progress of medical technology they would possibly find changes in brain (they have already found how people with schizophrenia have brain changes) responsible for the disease, who knows?!
Posted 12/15/2013 2:02 PM (GMT 0)
I agree with others that you could be in a flare or maybe you have yet to get your pain under control and it feels as if it progressing. I also have RA and it can be difficult at times to determine if my pain is caused by Fibro or RA.
Posted 12/15/2013 5:05 PM (GMT 0)
Progressive, meaning you get worse and worse over time, isn't what fibro does. We will have good times and bad times and some really bad times with pain (Flares). When I'm in more pain I can't think as well either. Fibro waxes and wanes but it shouldn't progress so you end up totally dibilitated.

If you think you are getting worse and worse and you are not having any better days, it would be worth it to bounce this off your doctor. You could have something else going on. This happened to me a little over a year ago. My back pain was getting so bad and it just never let up...for many months...and the pain was getting worse. That's when I headed to the rheumatologist because fibro isn't a progressive illness like that. It turned out I had ankylosing spondylitis along with fibro now. I was put on proper medication and am now doing great.

A few years back I was getting more and more fatigued, too. That wasn't the way I had always been. When walking, I would get some shortness of breath, too. At first my doctor thought it was allergies and I was given an inhaler but that didn't help at all. I finally asked him to test me for anemia and, bingo, that's what was making me so fatigued. I started taking more iron, we found the source of blood loss, and I'm not seriously fatigued anymore.

So, not all pain, as well as fatigue, is caused by fibro.

Sherrine
Posted 12/15/2013 11:11 PM (GMT 0)
When I was dxed at a large rehab center the Dr. told me this is progressive and will move into all 4 quadrants of your body, he sure was right. I started with it in my left shoulder and neck now I can't tell you a spot that has never flared. My flares are lasting longer and coming closer together. the time frame may vary, sometimes a few hours and other times a few weeks.

This Dr. took me to see a impatient with fm who decided to just stay in bed, he did have her permission to allow me to see her. she was in the fetal position her muscles went into atrophy from non movement. He said just keep your self going even when you have a bad flare, rest but move as much as possible. This girl was only 27 years old and when my pain gets bad I think of her and just keep going as much as I can. She did pass away about a year later but have no idea from what.

Linda
Posted 12/16/2013 1:08 AM (GMT 0)
Are you sure he was talking about fibro? RA is progressive, in that it will continue to get worse and affect more parts of your body,but I have never heard than fibro is. The pain does move around, but it travels to different parts of your body more than continues to get worse.

It is important to keep active and keep your body moving. What you do not use, you will lose. I would hazard a guess that this woman you visited had other issues than fibro. But, with fibro, the more you keep your body in gentle exercise and/or stretching, the better you will feel.
Posted 12/16/2013 1:32 AM (GMT 0)
Fibro itself should never put someone in that situation that the woman was in that your Dr. took you to see. That would happen to anyone if they stay in bed 24 hours a day, (ie coma patient), don't eat properly (I'm talking just general nutrition), stay hydrated, seek out counseling and/or medication to deal with any depression.

So I agree, she must have other medical issues besides this.

Was the woman this Dr's patient???

Movement and getting proper DAILY exercise is just as crucial as getting good sleep. These two things alone helped my symptoms close to 80%....The other piece of the puzzle was a muscle relaxer to take when needed because if/when I get into a flare, I take the MR and just let myself rest a bit more for a day or two. Still do my daily walk but not as crazy busy with other things.

Fibro is not some horrible life sentence! I was diagnosed back in the mid 90's and did everything I wanted from working a full time job, volunteering in the Fire Dept. traveling, hiking, biking, etc....It wasn't until my 3 spine surgeries that I started having some really big issues that affected my daily living.

Obviously we are all different, but that's why it's important to seek out the best Dr. who truly understands Fibro as well as using all the modalities to treat this and keep moving forward!
Posted 12/16/2013 3:43 AM (GMT 0)
Widespread pain in all four quandrants of the body is usually one of the criteria for a diagnosis of fibro. Add unrefreshed sleep and cognitive memory problems to the list.

Sherrine
Posted 12/16/2013 9:51 PM (GMT 0)
Well this Dr. is well respected and I have no idea why he would lie to me. Anyone that lays around 24/7 is risking atrophy. I sat with this woman and she told me don't take these meds, they made me so tired I just wanted to stay in bed and that is why I am like this. She had no other health issues because I asked her a lot of ?? being newly dxed.

Taking heavy duty meds you can lay around 24/7. I know my fm progressed until it hit all 4 quadrants and I had a fm friend who recently passed away, she was Just about bed fast from FM because that was her choice. She took heavy duty meds for years so she was able to just stay in bed. She had no quality of life for at least 7 years. Slept 14 hours a day.

I am not going to come on this board and lie to people but when I see this DR. again I will tell him this story is very hard to believe.
Posted 12/16/2013 11:29 PM (GMT 0)
Palmy, no one has said you are lying! We actually agree with you. I always tell people to keep moving because if you sit or lay too long, you will be stiff as a board and have more pain. I also encourage people to try a more natural approach and see if they can find things that will help them be in control of their pain. I suggest magnesium malate and vitamin D3 and have links in Fibro 101 about these supplements and how they work in the body. I also use ibuprofen and Tylenol and the only prescription med I take is a muscle relaxer that has helped me a lot. I also talk about gentle massages and trigger point therapy.

I've had fibro for 26 years, I have it in all four quandrants of my body...which is typical of fibro by the way...and I have and am having a full and enjoyable life in spite of this illness.

Other members have shared many other things that have helped them to be in control of their pain. That's what we do here. Help one another. Everyone is so different so we all have different ways of handling this illness. I hope you have found what helps you be in control of your pain so you are enjoying your life. If not, keep looking. There is a myriad of things to try.

Sherrine
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