A new day, a new doctor, different news... Since my rheumy didn't think the persistent pain at the ball of my right foot and the feeling of swelling and my limping wasn't necessarily caused by inflammation and was due to my secondary fibromyalgia, I figured, well, it might be a mechanical problem. After all, my feet have been flattening and I've been using arch support plates made specifically for my foot. So I thought, maybe the plates were too hard or something. Or maybe they were causing my feet to assume an uncomfortable position. Anyway, so I went to an orthopedist today, since my foot doctor is in my hometown... X-rays of my feet were taken, and guess what. Although he couldn't be sure, he saw a shadow on the ball of my foot, under my fourth toe - which is the exact spot of my discomfort. He changed my meds and told me to go again if my pain and discomfort didn't improve by the 25th, then he would ask for a CT of my foot. I asked him what the shadow meant, and he said that it could be a cyst or something, he couldn't be sure. And the medicine he gave me is another antiinflammatory + antirheumatic medicine. So the rheumatologist thinks it's a mechanical problem and the orthopedist thinks its due to my arthritis. And dare I imagine that the "cyst or something" is actually edema caused by inflammation? Because I sure feel that way!
This is so frustrating... Has anyone ever been told that "they have a shadow" on their X-ray? Should I be worried?
I had shadows on a hand x-ray, and it was diffuse swelling in a digit with dactylitis. I think that doctors use terms like 'shadow' to help explain things, but it can end up sounding more alarming- shadow sort of sounds ominous, doesn't it?
It's good we've got teams of doctors, for sure! Rheumatic diseases are pretty complex, and it's good to have checks and balances in place. It sounds as if you're on the way to getting a complicated set of symptoms explained or at least clarified somewhat. :)
no I've never had that. I just wanted to commend you for your perseverance through all of this diagnostic mess. You've really pushed for answers and continue to advocate for yourself. I think we could all use to take a leaf out of your book. Keep it up!
Rosen - "Shadow" most certainly sounds ominous :D We were standing there, side by side with the doctor looking at my x-rays with dead silence between us... And then he says "shadow", and I'm like, "Oh... what now?" :D So it could be because of the swelling... It's so weird that I can FEEL the swelling and no one can SEE it. How does that happen? Are my feet THAT big? :D
janeatiu - I really don't know if I deserve the applause but thank you :))) I just want to know exactly what's what and prepare my game plan... The only way I can get through this mess is by knowledge of what's going on. And I feel like I'm on the verge of some real information but still I'm an emotional mess lately. Not fun to be around at all...
Oh and janeatiu thank you for your comment about me being where I need to be in my earlier discussion about AS and fibro... I just saw it and didn't want to respond there because right now I'm worried about this shadow thingy so I didn't want that discussion to come back up :)
I seriously can't wait until researchers find the biomarkers specific to autoimmune diseases... then, you won't have to worry like this about whether you have AS or fibromyalgia or PsA or spattergroit... that last one's from Harry Potter, it's not an autoimmune or rheumatic disease, and I'm a nerd. :) Anyway, at that point they'll just know from the biomarkers what you have, and sometime after that (I hope) medications or lifestyle changes or whatever will be prescribed based on the exact issue you have, not what someone deduced from a handful of symptoms and the presence or absence of a mild rash.
But for now, I second the applause for sticking with this silly process and I hope it is solved in the way that is most helpful to you and your poor foot!
Oh my god, a fellow nerd!!! :D I spent last month re-reading all Harry Potter books (since that was all that I could understand anyway) and this comment just brightened up my mood!!! :D
And I believe soon we'll be knowing more about autoimmune diseases as well. I remember reading somewhere that it hasn't really been very long since "autoimmune" was accepted and taken seriously as a disease. Maybe we will even see those developments :) It's all comes down to where the research money is spent, or what research is funded really. Other than that, I believe that if there is a reason for everything (in our case, a reason for every disease), then there is a cure for everything! I mean, scientists have managed to get rid of so many diseases that would potentially kill us.. and science is the only thing I have faith in! (other than Dumbledore of course :)
rosen said:
. then, you won't have to worry like this about whether you have AS or fibromyalgia or PsA or spattergroit... that last one's from Harry Potter, it's not an autoimmune or rheumatic disease, and I'm a nerd. :)
It was pretty recent that they acknowledge autoimmune diseases, wasn't it? PsA was thought of as a type of rheumatoid arthritis until the 50's, I think. My rheumatologist (who is very near retirement) thinks I have RA sometimes... I'm glad it's similar enough in terms of treatment that he won't do me much harm by getting confused in that regard. I'll be finding myself one that's farther from retirement when this one retires later this year, so I won't have to worry about whether they remember what disease I have! It's a bit different from your problem, but maybe not as much as one would hope. ;)
Dumbledore was the man, for sure. :) I'm all about using my fuzzy fatigue brain for reading scifi and fun old fantasy books- during my first few months with the disease, I re-read a bunch of Piers Anthony's Xanth novels and it made everything so much more tolerable.
LadyLazarus, I’m joining in on the applause. Good for you, keeping at your doctors for answers. For years, I took the attitude that “if the doctor isn’t worried, why would I be?”. Well I am paying the price now.
Can I ask, were any of those x-rays done while you were standing, or were you on the x-ray table? Standing foot x-rays sometimes give more information. If they weren’t done that way, next time, ask for that (I’m thinking of the foot that is flattening, in particular.)
Yes, Ladylazarus, it's good that you're following through and being persistent about getting answers. I was in my early 20s when I got psoriasis, and I went to the doctor right away. It was quite severe when it started, so an easy diagnosis. I'm thinking if the PsA would have started then, I probably would have sought answers because 20-some year olds should typically not have chronic pain. You're definitely doing the right thing!
My pain came on gradually, and years after I had given birth 4 times. I always gauged any pain I would have against the pain of childbirth, so it took a lot before I'd go to the doctor with it. And, years went by before my internist sent me to a rheumy after I casually mentioned umpteen times about odd aches and pains I was having. The doctors always examined my fingernails. I think it was finally, after they became deformed when my internist sent me to a rheumy. And the first rheumy suggested it might be PsA but she was hesitant to make that diagnosis. She retired, and the second rheumy was the one who diagnosed it. He was sure of PsA right away. I had read about PsA, but never in a million years did I think I'd end up with it because it was supposedly so rare. At first, I was okay with it because my rheumy said in my case it would continue slowly, and he couldn't talk me into taking prescription meds (strong nsaids, Sulfasalazine, mtx). Then he couldn't talk me into biologics. I wanted to feel better but I thought that taking meds was a horrible solution and that they'd just be a bandaid and give me SEs that were worse than the disease. And, as we've all read hundreds of times here, a lot of people have bad SEs from different meds. I guess my big hope was my body would miraculously overcome the disease and I'd get well on my own. Getting sicker and sicker just made me depressed, and overwhelmed by how awful I felt all of the time.
Keep seeking answers and don't give up. Now you know there's definitely something in your foot that's causing of all that pain. (It's not in your head, as I'm sure the doctors make you feel that's what they think when they can't come up with any answers.) Hopefully, it won't be difficult to correct it, remove it, or whatever so you can walk without difficulty. It seems so unfair.
I think you're right that there are cures or better treatments coming. That's a happy thought, isn't it?
LL, way back early in my PsA journey when it was all in one foot I was complaining of specific pain in the ball below my second toe and one of the potential explanations that was fielded was a Morton's Neuroma ..... which if I remember correctly is a type of cyst on the connective tissue of the nerve sheath. I don't know if this goes by another name but you may want to do a quick Google and see if it compares to what you're feeling.
I too admire your intelligent determination to get to the bottom of your problems. And you will get there!
Ok, so I went to another orthopedist today after I called my foot doctor in my hometown and he told me not to wait if there was a shadow and get a second opinion and be sure if there is a shadow or not. Especially since I've already been waiting for weeks now. Another set of X-rays were taken (this time standing Seenie :), and the good news is this one didn't see any shadows or anything! I was so scared about that. Or maybe the medicine the other doctor gave me actually worked. I don't know, I don't care :) He diagnosed me with "metatarsalgia" which I gather is a very broad diagnosis, but when I insisted asking "but WHY" he said that my metatarsal joints were too low. I don't know if that's the case, he must have seen something on the X-rays. So he threw some more antiinflammatories and antirheumatics at me, and prescribed me silicon metatarsal pads. FINALLY someone gave me something soft to walk on! I'm SO grateful :D But I'll use the medicine the other doctor gave me. It was really strong (it didn't just stop the pain, it took all bodily sensations away, that's how strong it was! :P ) and also it was three in one - antirheumatic + antiinflammatory + analgesic. The others all give me something different for everything and I figured why swallow 3 medications when I can get the same effect with one!
And now to respond to your messages;
rosen - I never read Piers Anthony but I will look him up and read if any of his work was translated into Turkish. I LOVE science fiction and fantasy books. And I read mostly fantasy books in my first months of diagnosis. I surrounded myself with vampires and witches and stuff :) And I realized what all that hype about the vampires was about, it's that feeling of being invincible, which we clearly are not :) But reading novels make you forget who you are and lets you live someone else's life... So reading about someone invincible is therapeutic I guess..
Seenie and Grandma J - I will keep pushing for answers Seenie, no matter how many times I get that "oh she's making it up" look, and that hint of "crazy". I had it too many times and it turns out I wasn't crazy now was I? I will make those doctors give me answers :)
mataribot - my feet are definitely growing and they weren't very "petite" to begin with :P
Jules - thank you, I google'd it before I went and I think this metatarsalgia thing may be a symptom of it as well. We'll see how it turns out...
Hi, i get inflammation in the balls of both my feet and my rheumatologist was sure it wasn’t inflammation after he felt and looked at my feet. Luckily at the time he had been doing an ultrasound of my hands and I asked if he would use the ultrasound on my feet and low and behold there was inflammation in all my joints at the top of each toe. These rheumatologist a are fantastic and I love mine but they don’t know our bodies like we do. He did say after that ultrasound is one of the best ways to look for inflammation as it doesn’t show up in X-rays they only really show bone issues where psa is mainly inflammation which then causes bone damage so inflammation should be spotted before any destruction of joints.
I’m currently on an anti-TNF drug Humira which has helped massively. Unfortunately due to infections I haven’t been able to take my last injection but I’m sure I’ll pick up soon!
Hope your new insoles are helping
My new insoles helped very much! They gave me the temporary relief I needed to heal. Also, the medicine the first ortho I went to helped a lot too. And guess what, it was another NSAID used specifically for inflammation issues related to inflammatory arthritis! I'm quite sure it was/is inflammation, that's why I went from doctor to doctor. Right now my feet are much better, I even stopped taking my meds two days ago because they were messing with my head and I need to think clearly. If it happens or worsens again, I will not stop until some kind of imaging is done to see if there really is inflammation or not. After all, my first problem was inflammation in my SI, and my rheumy thought it was fibro until we got the results of the MRI. But right now I'm sick of seeing doctors and I'm just happy to be walking normally again :)
I hope you feel better soon too... And thank you very much for your concern and input :)
