How bad can Fibro get?

[Djen]

Hi, I'm new here, but not new to fibromyalgia. I was first diagnosed in 2003. Things were relatively stable for a long time, with good days and bad days.

In the last couple of years, though, my symptoms are much worse. I don't have anything close to one of my old "good days" any more. The best days I get are what I used to consider pretty rotten on the old bad days scale.

A couple of things have happened during this time frame. I turned 40 and had a difficult pregnancy (our 5th child, we were very surprised, the next youngest was almost 11!)

So, it's not like I turned a calendar page and fell off the edge of the earth, it was a physically challenging year between carrying the baby and nearly dying in delivery. But, at the same time, people deliver babies all over the world and their bodies don't just fall apart.

Plus, the baby is nearly 2, if it was just a pregnancy hiccup I think it would clear up by now, right?

Anyway, my question is, how bad can fibro get and still "just" be fibro. My rheumatologist is sending me for a neurological work up, because she thinks I may have MS or something along those lines. That's pretty scary, but we'll cross that bridge if we come to it.

In the meantime, are there fibro people like me who started out with good days/bad days and now just have bad days? How deep does the rabbit hole go? Can fibro put us a wheelchair? Can we end up bedridden?

I only know a couple of fibro suffers in real life, and this is the first any of us has hit the skids like this. Do people have ups and downs with fibro and do we bounce back? Or if you start sliding do you stay downhill where ever you get yourself stopped?

Thank you for reading all this. There is so little information out there, and some of it still reads like "it's all in our heads." I thought maybe a bunch of fellow sufferers could at least tell me what the view looks like for them, and that would give me a glimpse of what to expect.

Again, thank you.

 

[Takedon]

Nobody knows yet. Try to take medication if possible. It can reach very painful levels if you don't take care.

 

[1sweed]

Dien,
The affects of fibro differ from person to person. Some have severe symptoms that may lead to the use of a cane or wheelchair do to balance problems. Some people have severe fatigue and terrible pain, while others have only mild symptoms. When I first became ill my doctors thought I had MS, but since my brain MRI and spinal tap was negative it was decided I had fibro. Neither diagnosis is a good one because there is not cure, but even MS sufferers have mild to severe problems, that can improve or get worse in a short period of time. While my answer is not cheerful, both fibro and MS can have complete remissions of all symptoms for no reason what so ever.

I would say start reading the posts on the forum in the pain and fatigue, and alternative topic sections, and read the new, as well as, the old posts. Post any questions you might have and we will try to answer them. This forum is very supportive and even if we don't have all the answers we will try to be here for you on the days you need a shoulder to cry on or a cyber hug. Try to remain brave and positive no matter what the diagnosis turns out to be. And remember you are not alone anymore. We care about you!

 

[Djen]

Thank you so much!

And I didn't want anyone to worry, I am getting help with medications both from my rheumatologist, and my neurologist (for me this started with migraines), and I'm very fortunate because they work together on my case. There are many kinds of medications both specialties use, and my docs make sure I don't get doubled up on anything. They are such a blessing to me!

So when I talk about going downhill, it's with both doctors keeping up with me. Right now we're just looking at having the Neuro look at more than my migraine symptoms for the first time. It never occurred to me to tell her about the rest of my issues, because I thought it was all fibro, right? (And it still might be, that's the question right now...)

I appreciate that you've read this, and I thank you for your responses.

 

[Takedon]

Do not be that afraid. There are very low chances of you experiencing really infernal pains.