Hi everyone, this is my first post. My name is Patti and I am 54 years old. I have been suffering for 24 years with chronic pain. So 24 years of untreated Fibro, I can’t seem to find any information that explains the outcome of that. I recently had 2 major life events happen at once, Very emotional events. Needless to say I went into a flare. Today, day 14, I have improved physically and mentally just a bit over the last 6-7 days. My concerns are the lingering affects. Less mobility, stiffness, partial numbing of left leg, both hips flexors, brain fog. oh and my feet!! OMG MY FEET!
One of my questions is does anyone else here have a fake knee joint or any fake joints?? My knee replacement was done in 2020. Although that surgery put me into almost a 3 year flare, the outcome has been good. However, right now my knee (which IS my left, which is the leg that the worst)) feels like its wrapped with something and tight I guess. It is also popping and crunching now. It’s hard to describe. Just wondering if anyone else experiences this.
Another question is does anyone have lower leg edema (pitting) including ankles and feet with severe pain on the TOP of both feet? Any thoughts on relief from that?
I am having significant mobility\movement issues. I had some before this flare and now it has gotten worse.
Looking for support. Feeling very alone right now. I really need to talk to people who truly understand my challenges.
Enjoy Your Day!!!
Welcome to the forum! I’m sorry you’ve been going through such a rough flare recently. Some of what you’re describing does not sound like it’s fibromyalgia and sounds like it’s an inflammatory condition. If you have a rheumatologist you could certainly reach out to that person, otherwise I would talk to your GP. Pitting edema plus the pain on top of your feet? I’m actually not sure if they’re related. When I get pain on top of my feet like that (I have inflammatory arthritis) it’s usually tendon related. The fact that you’ve had a knee replacement says that you have osteoarthritis and what I’m wondering is whether you in fact have inflammatory arthritis on top of that. There’s some overlap in treatment options between fibromyalgia and inflammatory arthritis, but there’s also specific meds that are used for arthritis.
Sharon from ModSuppport
Hello there!!
My foot dr can’t explain the top of feet pain. I do have osteoarthritis. The vascular and cardiologist can’t explain the lower leg edema either. I’ve had batteries of tests.
I also have had whole body pain that moved all over constantly. Stiffness shooting pains trigeminal neuralgia, severe whole body muscle spasms. Numbness in multiple areas. Since this flare I have now even less mobility and definite cognitive issues. I also developed nastalgia Parasthetica on the top middle of my back. Which is now spreading up my neck. Bilateral carpal tunnel. I’ve had neck ablations. Back epidurals. Countless cortisone shots. I have IBS, multiple skin conditions and god knows what else. Hard to think of everything. l
When I had the knee replacement I also went through a 2 1/2 year flare of intense whole body pain that was literally just getting better when this flare hit, which was immediately after a severe emotional life event.
My toes cramp and go numb and every joint in my body is stiff and weak my hands feel swollen but aren’t and they’re very stiff. My gait is bad and my balance is worse.
Not one dr in 24 years has been able to explain my problems.
I’ve read that nerve damage can cause swelling in the ankles and feet and I kinda believe that since they swelled during the flare and now they’re back to normal after.
Ok so now what do you think?? Lol
You are a very complex human being
Sharon
Wait, why? As you know FIBRO IS very complex
Yup, fibro is, the other conditions and their combination are and we are, definitely!
Everyone is overwhelmed by such a load of problems, feeling overwhelmed (incl. docs!) is one of the symptoms, e.g. of fibromyalgia according to the 2022 UK guidelines… .
My experience is that docs can hardly help with such complexities, they can only exclude simpler ones. My only chance was to unravel each symptom, their triggers, learn to prevent what can be, alleviate what can be. My best help was first suggestions from friends, then forums, webinars and youtube physios.
To your questions:
What do you mean with that? Chronic pain isn’t necessarily fibro, it sounds as if you’re assuming that, rather than being diagnosed and having at least treatment tried?
That’s always difficult. I start with all my exercises for these kinds of problems as soon as I can, low and slow. Maybe just seconds, but as often as I can.
I have neither fake joints nor edema, but with any symptoms I look at 5-8 youtube videos by physios etc. regarding my symptoms and look around which of their self-treatments suit me best. For me, it’s about understanding, yes, but even more about what we can try to do about it ourselves, carefully.
What have you tried?