Question of Progression?

Hi Everyone,

I was diagnosed with Fibromyalgia going on about 3 years now. Like anything that I don't know about or want to understand better, I do research. After all my research I am finding that all literature says Fibromyalgia is not progressive. I do not know if it is my degenerative disc disease in my spine, or spinal stenosis in my cervical spine, but I feel like my pain has progressed.

Because I feel rather newly diagnosed, I would like to ask this question to those of you that have had your diagnosis for more than 10 years.

1. Do you feel that your pain or symptoms have progressed?
2. Has your fatigue increased over time?

I know we tend to have severe flare ups, but for the past year I have noticed an increase in the sensitivity to touch. My fatigue is a growing problem. I have had to forgo things I used to love to do, like going to the farmers market, or local street fairs. Just to be on my feet for more then an hour at a time wipes me out.

Thanks for your input everyone. I guess I am looking for a little relief for the future with these questions.

God Bless,
Kathy

Hi there,

My fibro has leveled off at this time. I hope that it isn't progressive, but I think as we get older, we get more aches and pains. Everybody is different, I do know that. Some of us believe this to be a progressive disorder and some of us aren't haveing that problem, at the time anyway.

Either way, we are here for you. This is a very frustrating disorder, I do know that. It seems like there is always something new coming up. I think though with your degenerative disc disease, you will have more pain and you should talk to your doctor about getting some relief.

Best wishes for a wonderful day,
Hugs, Karen

Well, to answer your question about stressful events in my life, yes, I guess there is a lot going on right now. My Mom is losing her battle with lung cancer and I am the one she trusts to handle shopping, bills and helping her bathe and get dressed. There are 4 adult children in the area, but she seems to trust me to do these things for her. I do not want to give up my role with her. I dont know how much time she has left, and will spend every minute I can with her.

But, I always quietly figured that my depression meds would keep me from completely losing it mentally. I was hoping the physical would not prevent me from being there with my Mom. It is just when I need to take time to be good to myself is when my siblings read me the riot act. I have a tendency to disappear into my home and not communicate with anyone. So, they think I am being selfish.

Anyway, thanks for your replies. I was hoping at some point in the future that I could regain some of my energy I once had.

Kathy

I would say that I have less pain and fatigue than I had 15 years ago.

Kathy, I'm so sorry to read about your mother. My fibro stayed the same for several years and then our 20 yr old grandson was killed in Iraq  over 20 months ago. The fibro has become worse every since. The pain is catching up to the fatigue but fatigue is still the worse problem for me most of the time. Right before Michael was killed I had spent over a year helping take care of a dear sweet uncle til he died. I do believe emotions and stressors has a lot to do with how fibro progresses. I'm 58 and have other factors like osteo arthritis to deal with which fibro makes worse.

 

I was hoping to regain some of my energy back with time but that hasn't happened yet. I think I need to get the treadmill out and start slow and see if that helps til the winter is over and I can get outside to walk with the puppy which should really get me going when nice weather gets here. I know exercise is so good for depression but getting myself to do it is another thing.

 

I think you have every right to take time out from taking care of your mom and doing things for yourself no matter what your siblings may think. They have no idea what it is to live in a fibro body. Maybe taking some long walks might help with all the stress and sadness you are feeling right now.

 

Take care.

 

luv and hugs

Marlee

Hi Kathy,

I don't know exactly who "they" are, but I know that I don't believe doctors or medical articles that say that fibro is not progressive.  Fibro does indeed tend to get worse as we age.  I think this is due to the fact that other conditions we have also tend to progress as we get older.  Things like arthritis, osteoporosis, degenerative disc disease, etc.  I have had 52 yrs. of experience and I find that fibro tends to level off or plateau every so often, giving us a much needed break, unfortunately sooner or later it starts to get worse again.  I also have found that the longer you have to deal with fibro it is much like dealing with any other debilitating condition.  You simply learn to automatically adjust the way you do things and your life style.  That doesn't mean your life has to come to a screeching halt, I still do most of the things I have always done.  True, it is kind of hard to go hiking in a wheelchair, but then I just have to find accessable paths. Life is what you make of it.  I come from the old school that didn't tolerate whining or giving up.  No matter what you had to push yourself to do what needed to be done, so it is a life long habit for me. Never, ever give up.  If you want to do something badly enough you will find a way to do it.  Don't let your fibro control your life, there are too many things out there to enjoy.

Kathy, as you have seen, stress plays a huge part in how we feel and how much pain we are in.  I don't understand it, but it is true.

 

Now, doctors and time frames.....My grandmother had exploratory surgery and had a huge tumor and cancer of the lymphatic system...one of the worst types of cancer.  They didn't remove the cancerous tumor because it would have killed her right then so they stitched her up and gave her six months to live.  She did take chemo.  Her tumor shrunk to the size of a golf ball and the cancer went into remission.  She died 15 years later of Alzheimer's!  So, the only one that knows the real time frame is God.

 

You and your Mom are in my prayers.

 

Sherrine

Kathy,

Thank you for posting this question. I have wondered about this. I was only diagnosed in April and since the change of seasons this fall, I've been in an awful flare. Just can't snap out of it. I'm 46 and I feel 86. Will have to wait to see if it progresses over time.

-Julie

Thanks to you all,
Thank you again for your advice and understanding. Along the same subject, it has to do with exercise. I will admit I have been pretty sedentary of late. But just yesterday, I stood in one spot and crushed cans with a hand held crusher mounted to the fence outside. By calfs now hurt very bad and I am limping because of how sore I am. I was not doing deep knee bends, just standing in one spot? How do we know when this pain is from exercise or from Fibromyalgia.

I do my stretches each morning, and am considering starting to go walking. Now, because I am so sore I am having second thoughts. How do I know when it is just muscle soreness and when it could be Fibromyalgia. I know I am rambling here.

I am just frustrated, I am definetly in more pain today then I was 2 years ago.

Thanks,
Kathy