Oh yes .... razor blades over hot coals!
Been there, still doing that. My feet are in terrible shape right now. I completely sympathize witht the broken glass comment. I have found that staying off of my feet, wearing very good shoes, and putting my feet above the level of my heart helps a ton. I am in between biologic meds right now and it is pure misery. Sorry that you are feeling much the same way.
Welcome to the community, BTW!
NYCR said:
It feels like I have been walking on glass for a year. I was diagnosed with plantar fassiitis and a sprained toe. my feet every day feel like I'm walking on glass stones.
its awful... on top of the fact that I have no idea what this disease means. I'm terrified. my feet are like sausages and i'm typing with stiff cigar fingers. what meds are you on?
GrumpyCat said:
Been there, still doing that. My feet are in terrible shape right now. I completely sympathize witht the broken glass comment. I have found that staying off of my feet, wearing very good shoes, and putting my feet above the level of my heart helps a ton. I am in between biologic meds right now and it is pure misery. Sorry that you are feeling much the same way.
Welcome to the community, BTW!
NYCR said:It feels like I have been walking on glass for a year. I was diagnosed with plantar fassiitis and a sprained toe. my feet every day feel like I'm walking on glass stones.
I started on Humira about 4 years ago, then it stopped wrking and I moved to Remicade. My insurance decided that they would no longer pay for the dose I was taking, so I had to move to another med which was Enbrel. I never really had a good response to Enbrel; it just didn't work for me, so now I am switching to Cimzia. I start that this week and it can't come soon enough. I also take Meloxicam (antiinflammatory), Lyrica for fibromyalgia syndrome, and pain meds. I am unusual in that most patients with PsA do not need additional pain management on top of the biologic med and an antiinflammatory. Most do very well with just that. I have never gotten back to where I was, but most do.
NYCR said:
its awful... on top of the fact that I have no idea what this disease means. I'm terrified. my feet are like sausages and i'm typing with stiff cigar fingers. what meds are you on?
GrumpyCat said:Been there, still doing that. My feet are in terrible shape right now. I completely sympathize witht the broken glass comment. I have found that staying off of my feet, wearing very good shoes, and putting my feet above the level of my heart helps a ton. I am in between biologic meds right now and it is pure misery. Sorry that you are feeling much the same way.
Welcome to the community, BTW!
NYCR said:It feels like I have been walking on glass for a year. I was diagnosed with plantar fassiitis and a sprained toe. my feet every day feel like I'm walking on glass stones.
I had the exact same thing as you when I first was diagnosed 5 years ago. It stopped me from walking. It was excruciatingly painful. The balls of my feet would be swollen and feel slightly bruised and my whole foot felt inflamed. When i put my feet on the ground it felt like something in the arch of my feet was going to snap. It's a very scary feeling.
I was very lucky because after being on methotrexate injections for about 6 months it took that sharp pain and swollen bits away. I could walk properly again. I've been on it since. I still have a lot of pain in my feet and it has spread to a lot of other places but it's much less and much easier to deal with. When i had MRI's done it showed that the inflammation had already done quite a bit of damage to my feet. But I never really noticed much loss of mobility. I have one sausage toe which has never gone away but it has reduced in swelling and redness over the years.
I really hope you start to feel better soon. What meds are you on?
My feet have hardly ever been sensation free. They have quite a repertoire. I used to get a burning sensation in the balls of my feet about 20 minutes into a Tai Chi set. And then it would gradually wear off as I kept moving and my feet would feel super-good for the rest of the day. Then there's the goblins who stick hot pins in toes .... just to make you yelp. Didn't mind that too much either, it was over in the blink of an eye.
Occasionally I've had foot pain that's stopped me walking. Or rather, made me limit the amount of walking I do. But again, didn't last. For a month or so, though, my right foot has been swollen where the toes join the foot and there's permanent pain there. Left one isn't swollen but it hurts. Walking is not something I want to do at the moment. Often I find that posting in a bit of detail about a symptom makes it go away .... so come on LWPsA ... work your magic!
For me, Sybil, the best relief from MTP pain is a thick, cushioned shoe sole ... so I will always reach for a pair of my FitFlops. They do some slip-on clog styles and I find the GoghPro is perfect as it's wide across the toes so no squeezing across the MTP's and they have a back strap if you need a bit of help keeping them on when you walk. In fact I need a new pair of slippers so I might 'treat' myself today :-)
What's MTP? I understand where you are referring to but wondered what the letters stand for :-)
MTP = MetaTarsoPhalangeal. It's the joints between the metatarsal bones of the foot and the proximal bones (proximal phalanges) of the toes. On the hand the equivalent joint is the MCP = metacarpophalangeal. Sadly two sets of joints that I am way too aware of on both my feet and hands :(
That's it! The swelling is cause for concern I think. Did hobble to a couple of shoe shops in lunch hour. I nearly hit the roof when one assistant kept pressing me to go for a pair that didn't fit properly. He definitely got TMI. Pointed out that when every step hurts there's no way I'm going home with anything less than perfectly comfortable shoes. Might resort to buying fitflops or something similar online but I'd really like to try them on first if possible.
Jules G said:
MTP = MetaTarsoPhalangeal. It's the joints between the metatarsal bones of the foot and the proximal bones (proximal phalanges) of the toes. On the hand the equivalent joint is the MCP = metacarpophalangeal. Sadly two sets of joints that I am way too aware of on both my feet and hands :(
Thanks. I get it too. But for me it us painful in feet but lmore stiffness in hands. Sybil, I so agree, if the shoes are not right they are not right!
The special "old lady" shoes I bought are New Balance 847v2. They come in "wide" and thankfully so because I have a wide foot. Yes, they do sometimes try to convince you to wear a shoe that doesn't fit correctly. In my case, the salesman tried to sell me size 10 wide, but size 9.5 wide fits me perfectly (I have big feet--but I'm tall, so they are proportionate). They're thick-soled, but stiff so they really only bend at the toes. That's what my doctor told me I need for good support. They are soft inside--especially the tongue, which feels noticeably better when laced up than any of my other lace-up shoes. When I wear them (and I usually only wear them to work) my feet feel better and don't get as sore by the end of the day.
I'm waiting PATIENTLY for my MRI results, which really will probably just say what I already know anyway--the joints where the cartilage is worn away are inflamed and what you're describing, Jules, sounds like what I have too.
I never heard of FitFlops, except for on here, so I'm going to research them right this minute.....I would like some variety. My other athletic shoes, which I love the look of, are Skechers D'lites, but they really don't provide any relief for my feet.
I got the written report of my foot MRI and the main conclusion is "Advanced arthrosis involving the dorsal articular margins of the second, third and fourth tarsometatarsal joints with extensive underlying reactive marrow changes. This has the appearance which may be compatible with osteoarthritic change although involvement with psoriatic arthritis cannot be excluded, especially given the associated inflammatory component within the adjacent subchondral bone." I guess that, along with synovitis of the MTP joints and bursitis explains the pain.
For some reason, my left foot is more painful than my right, but I'm sure the right foot has the same stuff going on. It's really slowing me down, I tell you! I know I should be wearing my granny shoes all of the time, too, because they really do help prevent the inflammation that seems to build up to unbearable (no pun intended) pain as the day wears on.
I've been thinking about how this pain affects my daily living, and I guess I can accept this foot pain better than back pain because the back pain I had was more disabling and if I never get that again I'll thank my lucky stars! :-)
What's hard about having these bad feet is that they're here to stay. The cartilage is gone and other than having surgery to fuse the bones (which an orthopedic doctor told me that isn't always successful) I can't figure out how to have relief, other than to stay off my feet! You see, that's why I asked the doctor for crutches in March when this all started--I think if I had used them I would have avoided further damage and the inflammation would have settled down better!
But, maybe not! It's good to have an official diagnoses on record because when people ask me why I don't want to walk much or why I'm limping I can truthfully tell them I have BAD arthritis in my feet which was confirmed with an MRI.
Tmb, I didn't mean to take over the discussion you started about your foot pain, but more to explain how we can find out what's causing our foot pain through MRIs, etc. so we can figure out how to get relief from it. :-) Don't let the pain go like I did until it gets to the point of permanent damage--I'm pretty sure my damage all started when I had neuropathy a few years ago and the tops of my feet were slightly sore ever since and I didn't get treatment for my PsA until 15 months ago.
I hope your feet are feeling better these days!
I agree with you Grandma J that persistent foot pain requires investigation. I'm going to ask for imaging when I next see my rheumy. Given the wandering nature of PsA I can understand the reluctance to do x-rays etc. when one bit is playing up. But when pain comes to stay and definitely interferes with our ability to do things - like walking, for example - then surely imaging is a required. I really, really want to know whether my feet are more damaged now and / or whether I can reasonably hope to return to pounding the streets!
How are you doing these days tmb?
The trouble with plain x-ray imaging is that it only shows damage that is already done. It does not show inflammation. I had x-rays of my hooves done a couple of times over a few years. They showed nothing. Finally, I asked for another set and ... erosions. And as lamb says, once you've got those, you are screwed.
Sybil, you are right. persistent foot pain requires thorough investigation, which, for some reason a lot of docs can't be bothered to do. I guess it's another case where we as patients have to stand our ground and insist.
Ugh, Grandma J, not good news. I'm sorry to hear this. Let's hope that furtherdamage is arrested by the Enbrel.
Grandma J said:
I got the written report of my foot MRI and the main conclusion is "Advanced arthrosis involving the dorsal articular margins of the second, third and fourth tarsometatarsal joints with extensive underlying reactive marrow changes. This has the appearance which may be compatible with osteoarthritic change although involvement with psoriatic arthritis cannot be excluded, especially given the associated inflammatory component within the adjacent subchondral bone."
X-rays of my feet 3 years ago showed 'degenerative changes' i.e. osteoarthritis, ostensibly. They do show the joint space narrowing I guess. My rheumy just says the feet look 'damaged' and doesn't bang the OA drum anymore, I think he accepts that PsA is mostly to blame whether the damage is OA or erosions or whatever.
What I like about the report Grandma J received (apart from the fact that, obviously, I do not like what it confirms one bit!) is the way it acknowledges that changes that appear to be osteoarthritic may well not be IF the wider context is taken into account. I think what many of us fear is the old chestnut: "sorry love, it's OA, it's inevitable as we age". Because if that's just plain wrong then damage which should be taken into account when treating the inflammatory disease, won't be.
What is the best imaging, if any, for getting the best possible picture? I hear conflicting things.
Seenie said:
The trouble with plain x-ray imaging is that it only shows damage that is already done. It does not show inflammation. I had x-rays of my hooves done a couple of times over a few years. They showed nothing. Finally, I asked for another set and ... erosions. And as lamb says, once you've got those, you are screwed.
Sybil, you are right. persistent foot pain requires thorough investigation, which, for some reason a lot of docs can't be bothered to do. I guess it's another case where we as patients have to stand our ground and insist.
Grandma J, I'm sorry this isn't better news for your poor feet but at least you and your rheumy now know exactly what has been/is going on and give you a proper baseline that can be monitored to make sure the Enbrel is protecting you from further deterioration. I know I 'go on' about orthotics but now you know exactly where your damage is, I wonder if you would benefit from seeing a biomechanical podiatrist who, if it's appropriate, can get you custom orthotics which might help offload some of the stress put on the worst damage. I have two pairs of orthotics, one just a general pair but the other is specifically designed to reduce the pressure on my 2nd left MTP which has quite a bit of damage .... when I'm getting a flare of pain there they make quite a bit of difference.
As for the best imaging? The x-rays I've had done have been great for bones, the ultrasounds great for inflammation of soft tissues (and guided steroid injections into bursae and joints) and the MRI's ..... well, they seem to show both but in a different way. My jury is out on the real benefit of my MRI's until the surgeon has been in to my knees and I know whether what he finds is the same as what the MRI 'saw'.
Oh GrandmaJ, that’s not good news, but I suppose it’s similar to diagnosis in that now you know. Now it’s just figuring out how to best apply that information. I like Jules reasoning of using it as a baseline for knowing the damage. This got me going and will ask for xrays I have been avoiding thinking there was no point in them. I also looked up (based on suggestions from a different discussion) fitflops and will be searching for a retailer nearby. Still surprised your doctor did not offer injections only an oral steroid but then again knowing how tough you are ( understatement for sure) you’d probably turn it down. There is nothing wrong with that however you cope with symptoms is up to you but so glad you took that step for Enbrel and hoping for the best prevention wise. Hope you’re doing a little better today.
Yes, Sybil, it was time to get a definite answer. Not just an x-ray, because they're so limited. I agree with you about waiting because sometimes the pain just kind of fizzles out. That's the ideal ending of it! But, it just didn't seem like that was going to happen. From what I've read, cartilage can repair itself--if it's there--but if it's gone, it won't grow back.
Be careful about your feet, Sybil. If they aren't to the point of no return, baby them, wear those Fitflops or whatever shoes are best for them! I sure wish this hadn't happened to me. It's hard being so active when my feet are failing me!!!!
Sybil said:
I agree with you Grandma J that persistent foot pain requires investigation. I'm going to ask for imaging when I next see my rheumy. Given the wandering nature of PsA I can understand the reluctance to do x-rays etc. when one bit is playing up. But when pain comes to stay and definitely interferes with our ability to do things - like walking, for example - then surely imaging is a required. I really, really want to know whether my feet are more damaged now and / or whether I can reasonably hope to return to pounding the streets!
How are you doing these days tmb?