Fibro: Does it worsen?

[DawnC]

Hi All. I was DX with Fibro in 2015. I had classic symptoms of pain in shoulder blades, knees, hips, tingling in feet and extreme fatigue. Generally weak. But, while I would have flare ups, it was tolerated and I was able to live life. Recently with a lot of new undiagnosed health issues (some heart) I’m also experiencing worse pain in body, burning, tingling and I sound like a Rice Krispies commercial. I’m so weak, and I’m so frustrated. I went to neuro who did an EEG, and MRI and CSpine mri (my head burns and body) and all clear except non concerning c spine stuff. I’m getting an EMG and NCS in OCT and scared it’s a scary disease I won’t name. I wondered if anyone here has had fibro progress into a whole different havoc? My doctor thinks it’s fibro but if it is…my fibro evolved overnight!

 

[sunkacola]

Hi Dawn,
Fibromyalgia doesn't exactly evolve into other things. But it's common for people with fibro to have or to develop other things alongside the fibro. And what is also common is for new symptoms of the fibro to develop along the way.

the thing to keep in mind is that any new symptom should always be checked out by a doctor, even if you are firmly established as having and living with fibro, because unless you do you don't know if the new thing is fibro or something else that should have its own treatment.

You say that now you have developed new health concerns, and I see that you are smart enough to get them all checked out. If they are not something else, then they may very well be new manifestations of the fibromyalgia.

This doesn't mean necessarily that the fibro has worsened, as it is not considered to be a progressive disease. But as we age or as other health concerns manifest in our bodies, the fibro may appear different or some aspect if it gets worse because it's operating alongside something else that is either having an impact on the fibro or else is worsening itself, making the fibro symptom(s) seem or even actually be worse. Unfortunately, fibromyalgia is very complicated as syndrome and not well understood, so no one can successfully trace the exact connections there.

Best course of events is just to continue managing the fibro as best you can.

 

[Allglory2God]

Hi. It sounds like you have started the process of elimination in order to find the proper diagnosis and start the proper care that entails. Continue to be your own advocate. Be aware that you may never receive a diagnosis as autoimmune diseases can be very tricky and the American Medical Association are filled with humans that can often make human errors. Stay on top of your medications and all of there side effects. Don't accept a new medication with out asking how long you are expected to take this medication and research and ask the compatibility with current medications. Ask what medications can I stop in order to except this new med. Seek natural remedies to pain relief. And anti inflammation diets may work for you also.
Good luck on your journey and I hope you get results quickly. I've been on the fybro road for a few decades now. I am constantly evolving adding and dropping different modalities and such.

 

[JayCS]

I wondered if anyone here has had fibro progress into a whole different havoc?
My doctor thinks it’s fibro but if it is…my fibro evolved overnight!

Hi Dawn, yes. My fibro continual full flare starting 2019 might have stayed fairly stable, until the jabs brought up the MCAS I'd obviously also had before (100s of intolerances now evolved into additional histamine problems), and since the 3rd mix-jab it's "evolving" with inexplicable new symptoms every month, I'm beginning to think every week. My doctor wasn't thinking fibro, he was thinking cancer (whoops ) or something else, but I'm not getting much further with it, except learning to manage the symptoms with new toolboxes and uro cancer now excluded.
Pretty different symptoms to yours, except "weak" - if you count that my energy per day is now down to about an hour spread over the day, instead of 3-4 hours with just fibro. I can never say weak, my muscles are strong as ever, but only last for minutes.

Your title question we've often answered here, I once distinguished about 10-15 reasons why fibro may seem to worsen, altho it's not actually the fibro itself.
What helps me with the new symptoms is to have zero tolerance for anything that I can improve, like all local pains, my sleep, GI. Having those under control allows me to focus on the new things, to distinguish better what's what, to apply and adapt techniques I've learnt to them.
And that's one of the big reasons I think that fibro may seem to worsen - getting too "used" to the old symptoms and not doing enough about them can worsen them, cause consequences and a build up. The way out would be to do what I know has helped me more diligently and sort things out for myself, cos the docs usually can't find anything anyway, and even if they "find" something, they usually can't help with it anyway, and also just waiting for their (possible but unlikely) help is letting things get worse in the meantime.

 

[Looby69]

Hi @DawnC I can relate!
In December 2020 my life changed overnight. I woke up in pain and it has never left me. Each day varies in intensity.
Like @Shel I've seen 3 neurologists, a rheumatologist and an orthopedic consultant, as well as a visit to a chiropractor. My most recent neuro vist was about 6 weeks ago.
I've had the full MRI (spine, cervical and brain) EMG/NVC and all come back "normal"
I am now on HRT as it was thought my symptoms were due to the menopause. I believe there is some truth in this, I am also taking 50mg of Levothyroxine.
I am now suffering with my 2nd frozen shoulder in 2 years. I've lost range of movement in my left arm. Same journey I experienced with my 1st FS so I'm trying to just wait it out.
The cracking, crunching and tendon snapping is something else though, along with muscle twitches. Very scary if you consult with Dr Google.
I know my post isn't going to help you in any way, shape or form, however, I hope that hearing how many consultants I've seen and all saying my symptoms are fibro related, helps to ease your anguish.
I remain optimistic and have gratitude for all the things I can still do, albeit with difficulty most of the time.
Here if you want to share/know more about my story

 

[sunkacola]

Very scary if you consult with Dr Google.

Which is why I always strongly recommend NOT to spend time doing that. "Dr Google" is very unreliable and most of the time only serves to frighten people, which in turn causes stress, and if you have fibromyalgia your symptoms will be exacerbated by stress.

how many consultants I've seen and all saying my symptoms are fibro related, helps to ease your anguish.

New symptoms may be fibro-related, but they also may not be. Any doctor who simply assumes that something new is related to the fibro is failing to do their job, because every new things should be checked out to be sure.

I remain optimistic and have gratitude for all the things I can still do,

...............and this is so important. It's not always easy! And sometimes I think those of us who take this road, -- to remain positive and find joy and gratitude where we can, -- and stay on it doggedly deserve a medal of some sort. It's easy to fall into pessimism or despair or feeling sorry for oneself; staying strong and alive takes courage.
I admire each person on this forum who is hanging in there in this way.

 

[JayCS]

Very scary if you consult with Dr Google.

Which is why I always strongly recommend NOT to spend time doing that. "Dr Google" is very unreliable and most of the time only serves to frighten people, which in turn causes stress, and if you have fibromyalgia your symptoms will be exacerbated by stress.

I guess this will at first often be the case for anxious people who don't yet know how to use health information on the internet and put it into the right context.
Even then, I'd've thought such scariness would motivate more to get things excluded than it can paralyze. So easy for patients and docs to blame it on the fibro before excluding "everything". That's what I read mostly on the forums as compared to only few people who are scared by and can't cope with possibilities. Being scared and getting stressed in this case I don't think is a bad thing at all. If it does get so, then that will be part of a bigger anxiety thing that needs to get sorted anyway and will lead to being scared whatever people do.
Our real doctors are usually so overwhelmed by our symptoms that any information helps what to ask them for, which types of docs or therapists may have a clue. Our fibro symptoms all seem to be "inexplicable", and new symptoms often also, and if docs blame everything on the fibro too quickly web-ideas that it might be something else, and even what, can help us self-advocate. So looking at web info at first sometimes feel scary, but it's part of getting net savvy and also fibro-savvy to get used to that. And if I compare it to things that really stress me, this is something which we can get used to and knowledgeable about, rather than things like the news, which are always selected to be scary news.
In contrast youtube has become my best resource for pinpointing and treating my symptoms far better than any real life physio and especially doc. Altho of course I always went to these too (and some even helped a little bit), and I always get every new symptom checked by docs as well as doing a web search before, to know what to ask for. All my docs encourage me with this.
Getting used to web health ideas by putting them in context usually calms and gives ideas, allows progress esp. when like me docs are hopeless. It's part of self-education, knowledge is power and gives strength. My GP suspected cancer, the cancer doc didn't do anything, but looking on the web at what at least prostate cancer actually is and does calmed me. (That's been excluded now, other cancer forms haven't.)

Hehe, who needs the web when I've got a wife who keeps worrying and telling me I could have cancer and please try to get it checked further with someone more capable.

 

[Looby69]

New symptoms may be fibro-related, but they also may not be. Any doctor who simply assumes that something new is related to the fibro is failing to do their job, because every new things should be checked out to be sure.

When you have had as many consultants visits as I have had, not to mention my GP consultations and they are all saying its Fibromyalgia/ Menopause, you reach a point where you have to accept that that is was it is. No matter how much you may think otherwise.
I'm at the point now where I simply think, what will be, will be.
I continue to push through, I rest when I can/need to. I have reduced the days that I work (health over wealth) and I exercise and walk as much as I can.
I will never roll over to this, every day is a gift

 

[DawnC]

Thank you for your reply. I’m working hard to get to the bottom of this new health journey.

 

[sunkacola]

Thank you for your reply. I’m working hard to get to the bottom of this new health journey.

The interesting thing is that there is no "bottom" to get to with this. What I mean by this is that there will always be more to learn, not only about fibromyalgia itself but more importantly about your own body as it changes and adapts, and as your mind and way of living changes and adapts from day to day, month to month, year to year. Learning what your body needs, what works and then what works when that stops working, how to manage this new thing or that, how to adapt when something actually gets better, how to adapt when it gets worse. It's all interesting. I have made it almost a hobby to notice what I learn about myself from year to year as I manage this and see what it does. There's been a lot to learn, and while I wish I didn't have fibro, the pain is always a great teacher one way and another.

I think the most important thing I have learned is radical acceptance. Accepting what IS, right now, in this moment, and fully accepting all of it, with nothing left out. The degree to which I can do that is the degree to which I can have peace of mind no matter what is going on.