Exactly! Looking for joint damage as evidence of PsA is just plain daft. You make the point well, keep emphasising that. Nobody required the stable door to be shut to diagnose that my horse had bolted.
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Weasel, damage isn’t going to show up on your foot x-rays until it does. I’m not saying that facetiously, but I do hope it brought a wry smile to your face.
My PCP took the “Oh, everyone’s feet hurt” view for a long time. The advice was always “get new orthotics”. I’d continue to complain. She’d order an x-ray every year or so to prove (mostly to herself, I figure) that I just needed to lose weight, exercise more and complain less. Xrays always showed that there was nothing wrong with my feet. 
See?
Then one day, I bolted to a foot doc who did x-rays and found erosions everywhere. My PCP’s comment was “I don’t know how we missed that.” I didn’t explain to her how “we” missed that. I was then sent to a rheum who took the view that my disease was mild. I fretted silently, wondering how my disease could be mild when my feet were already showing damage. After a year of ineffective medication trials, I asked for a biologic. She refused, saying my disease was too mild. That’'s when I stopped fretting and took action. (Egged on by the good people here, mostly tntlamb.)
I went to a specialty PsA clinic, and to make a long story short, their assessment was “severe disease, a lot of damage”. I needed a biologic asap. And they were right. The biologic changed the course of my disease and my life. My feet, though, are now permanently damaged. I wear extra-depth orthopedic shoes, and I travel on a mobility scooter. Fortunately, I can still walk short (house and garden) distances, but my lifestyle is severely limited by what my feet can’t do.
In a teaching moment at one consult at the Research Clinic, the PsA researcher pointed at my feet and counselled the resident-in-training, “Never EVER let this happen to one of your patients. Foot complaints should always be investigated very carefully.”
My advice? Insist as strongly as you can on diagnostic modalities that will reveal inflammation and early-stage damage, such as musculoskeletal ultrasound, and MRI. MRI will also show things like bone oedema (swelling), which is very painful but which doesn’t reveal itself easily.
Your feet are incredibly important. Knees, hips, shoulders, jaws, ankles, elbows and who-knows-what-other-joints can be replaced, and I have my share of metal joints. Feet, though, are very hard to fix. Complain about yours, and don’t stop until they stop hurting.
JMHO
OMG I bet you could have strangled the PCP after that comment!!! I’m impressed at your self-control, Seenie! 
And the, “Oh, everyone’s feet hurt” – ugh, I hear that so often I could barf! Everyone seems to have such terribly painful feet, which, yes, I’m sure they have pain from tight shoes, or being on them too much, etc., etc., – but it goes away. I’ve had foot pain–plantar fasciitis and neuropathy. I could still walk without a limp. It hurt, bad, but I don’t remember the pain getting worse as I walked or my legs getting weak from the pain in my feet. Now, with the cartilage eroded from some of my arch joints, the pain is terrible and most of the time I limp and walk really slowly and carefully–and I can’t imagine walking any distance at all anymore.
If I had only realized the neuropathy in my feet was doing damage, I surely would have done something sooner. I did treat the neuropathy by taking nortriptyline, and the erosions didn’t occur until a few years later–almost a year after I started taking Enbrel and totally unaware of the looming foot problems I was about to experience. The damage is real and it’s not really repairable…not, anyway, with much success, I’ve heard.
How very true! It’s very depressing thinking you might be in a wheelchair because your feet can’t hold you up anymore…Seenie, you take it like a trooper…I expected to have strong feet for a lot longer than I’ve had them…this doesn’t sit well with me at all…weasel, don’t let your doctor ignore your foot problems.
Naaaah, it wasn’t anything to do with self control: I was gobsmacked. I still avoid her whenever I can. Fortunately, there’s a NP who is smart, lovely and very supportive.
I feel a great deal of anger towards the MD. One day we will have a so-called “full and frank” discussion. It won’t be pretty.
As for taking it like a trooper, GJ, is there any choice? I want to live my life as fully as I can. I either suck it up and keep moving, or I can let it beat me. I’m too stubborn for the latter.
And yes, the point is, “Weasel, don’t let your doctor ignore your foot problems.” Tell him/her that you don’t want to end up like Seenie. LOL
Wait, what??!!! Neuropathy in your feet does damage??
Ok, I just re-read what I wrote and realized how naive I must sound… but what I’ve read seems to imply all the time that it’s pain perception- damage is never mentioned.
Though I suppose if your pain perception is damaged, that’s probably not a small thing,.
i guess I’d better follow up that neurologists referral. I keep trying to convince myself it is poor absorption of vitamin B (which I am predisposed to) as my neuropathy is transient.
But back on the thread, the good news Weasel is that whilst structural damage is common, you can also get very severe foot pain (and even shoe size changes) due to tendons and ligaments not working properly due to inflammation - which - ta da! Can go from googling wheelchairs to comfortably taking a normal walk on effective medication.
This probably mostly works if you catch it early. Seems in many ways I was lucky my PsA hit me like a truck, rather than a creeping sneaky ache and pain here and there (even if I didn’t feel lucky at the time…)
Thanks everyone for the advice and encouragement. I think I’ll push my PCP for a foot MRI when I see her next, since the rheumatologist seems resistant to it. I have amazing insurance right now and generally don’t pay a dime aside from office visit co-pays, so I really don’t see what the hesitation is in checking it out. I mean, I don’t want to waste anyone’s time if there isn’t a problem, but everyone is getting paid to do their respective jobs and it’s better safe than sorry, so it really isn’t a waste of time anyway.
I’m really sorry to hear your horror stories of dismissive doctors. @Seenie, I would be waving those xrays in my doctor’s face and reminding her that she could have prevented this!
@Jen75, I don’t know much about neuropathy, but even if your pain perception is exacerbated, isn’t there still an underlying source of pain which would be what is causing damage? Or can neuropathy cause you to feel pain when there is nothing causing pain at all?
My feet bother me every day. I’ve noticed that most days when I work and am in proper footwear (mountaineering boots), the pain generally holds off or is minor until I take off my boots (which I hesitate to bring up with the doctor, because then she’ll just think it’s a footwear problem, but I never had this problem prior to the widespread joint pain). Within 5 minutes of my boots coming off I’ve got foot pain and find myself hobbling around trying to put my weight on the sides of my feet because that’s less painful. The long-lasting pain is mostly concentrated in the balls of my feet and the three middle toes, though I also get sharp fleeting pains in the rest of my toes, my arch, and sometimes the sides of my heel. I’m sure the sharp fleeting pains are tendon problems, but I don’t really know if the other pain is something that would be causing joint damage or not. My toes are about the only place that I occasionally get minor visible swelling in and the ball of my foot gets bright red on bad days when I have to walk a lot (a lot being more than 15 minutes of walking). Anyway, now you all know way more than you need to know about Weasel’s feet.
I wish there was a way to distinguish between pain that causes damage and pain that does not. In theory maybe none of it is causing damage if I don’t have much swelling and don’t have increased inflammatory markers… thoughts and experience with this, anyone?
There’s a speciality PsA clinic in the state. I might ask my PCP for a referral there if things keep going poorly with the rheumatologist.
Trust me, I’ve come close. But the day I do that, I’ll also throw in a few other visual reminders: big fat orthotics, ugly extra-depth shoes and a very expensive mobility scooter. May as well go the full nine yards. LOL
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There isn’t. With this disease, occasionally people get damage without warning pain. Pain is absolutely not a reliable way of knowing what is going on.
Neither are inflammatory markers. My markers were always in the reference (normal) range. My thin-as-a-twig doctor blew that off too, saying that weight loss would fix that.
I had a bit of a sore hip when I was diagnosed. My rheum said “minor OA”, and treated me as a “mild” case of PsA. During that year, my hip destructed to the point where they thought I had something called AVM. My orthopod disagreed, saying that, judging from the wear pattern, it was PsA, even though my inflammatory markers were still in the normal range. The proof came when he replaced the hip: I lost 2L of blood in surgery. Bone isn’t normally very vascular, but it will vascularize if the joint is inflamed badly enough for long enough. Apparently my pelvis bled like a fountain.
Re: your feet love hiking boots
Consider this as possible explanation: As long as your feet are supported, and there is minimal movement of your foot joints, you are comfortable. Let your feet out of their support system and let the joints move, and that hurts. My hiking boots are what I wear when I need to walk as far as possible for as long as possible. (In my case, that’s about 15 minutes.)
Weasel, I’ll cut to the chase (with a weasel, that should be fun): I wouldn’t be waiting to see how you get on with your rheumatologist. I’d be signing up at the specialty clinic as soon as I could. If I’d listened to @tntlamb when he first told me to go to the one in our province, I decided to wait and see how things went with my rheum. I found out.
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Actual degenerative changes in the spine start at about age 15. Thats not to say its always normal but those changes take some very specific roads if they are PsA(or similar) related but imaging is only one small piece of the puzzle and not an edge piece at that. hang in there. You deserve answers…
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@tntlamb, yes you are correct, and I realize that some people can even have herniated discs in their spine and not feel the effects of it (the MRI also found a bulging disc, which probably had very little, if anything, to do with my pain). However, when you pair an MRI showing arthropathy with a young patient who has had non-stop back pain for 3 months straight at that point (and I mean not a single minute of relief during waking hours during that 3 months), who had to take time off from a job that she loves to go do because of that pain, who has had a history of back pain on and off for 3 years, and who at the time was in so much pain that she had to literally roll to get out of bed and couldn’t even drive herself to the appointment… that combination should raise a red flag and shouldn’t be brushed off as normal without further investigation. Like you said, imaging is just a piece. It needs to be paired with other pieces. Self-reported symptoms are also a significant piece of the puzzle–and a rheumatologist who doesn’t listen to that piece probably isn’t going to do me much good in the long run.
That’s all true but there are very few abnomalities in spinal studies that are indicitive of inflammatory arthritis. The most commonly seen abnormality is facet arthropathy which certainly can cause a lot of pain, including what you have described but is not often the result of inflammatory arthritis.
Sometimes terminology has a lot of crossover. What they would be look for specifically for inflammatory arthritis is kyphosis, enthese abnomalities syndesmophytes, squaring of vertebral bodies, ossification of ligament, and disease of the facet joints and even then it should be classically symmetric. There can be a lot wrong but still be considered “normal” at least in terms of rheumatology.
It takes time to get a diagnosis and a lot of frustration along the way. (Not to mention it may take more than one doc) Hang in there.
Well, that’s the only thing I can figure. I had neuropathy for quite some time. It would progress during the day–every day–until I was nearly in tears. And, I never cry from pain. It made me weak and tired, the feeling of walking on a bed of red hot nails. I think I put up with it for too long before doing something–the nortriptyline helped ease the pain, but it was awhile after that before I went on Enbrel. My feet were mildly swollen before I went on Enbrel, too, but my rheumy never really explained much to me. He just said, your feet are swollen, or something to that effect. Anyway, what caused the final destruction to the cartilage in my arch joints was going up and down the basement stairs 50 times or more, hauling my Christmas stuff down to store. I had to make more trips than usual because I don’t dare carry anything too heavy. It was March 1, 2015, and I’ll never forget that date because my feet haven’t been the same since. Only slowly getting worse.
Some of my pain is like that in my arches–I think that’s where the cartilage is eroded away and it’s bone on bone.
It’s good the hiking boots help your feet feel better! I can’t say any shoes or exercise makes my feet feel better. I only walk short distances anymore–a 5 minute walk is nearly impossible.
Here’s a good article putting some numbers to common degenerative features found on lumbar MRIs, even in people without lower back pain: http://www.nejm.org/doi/full/10.1056/nejm199407143310201#t=article
@tntlamb, I didn’t mean to suggest that the arthropathy should have pointed to inflammatory arthritis. It was in fact facet arthropathy, along with a some associated degenerative changes (unfortunately I lost the report and need to request a new copy). However, the doctor came back and flat out told me that nothing found on my MRI was the source of my back pain–to quit carrying a backpack at work (which I wasn’t actually doing much of at the time and if I was it was less than 10 lbs) and to take some muscle relaxers in the meantime (which did nothing for my pain, unlike a prescription NSAID which at least took the edge off the pain, suggesting inflammation as the source). He blamed everything on the overuse of my muscles, and believe me I know that I was not even close to pushing myself to my physical limits at the time and my work was rather light-duty. So what I’m trying to say is that for him to dismiss the facet arthropathy as normal and to pin the pain down on strained muscles, which had no support either clinically or from my perspective as the person using the muscles, was ridiculous. Instead of telling me to go home, he should have opened it to further investigation, done follow-ups, etc.
I’m very curious to see if there will be any changes on the MRI next week. I think that changes over the course of one year will be more tell-tale than any one set of images alone, for the reasons you’ve stated.
The images may not be as telling as you think. They normally read the t2. I would suggest you insist on STIR sequences in your study next week. They didn’t/couldn’t do those sequences back in 94 when the article you quoted was written. They pretty much will confirm the inflammation issue. Why Rheumies depend on changes in flat screens and rarley use STIR is a mystery.
I’m surprised they didn’t send you to PT. How you react to movement/exercise is telling too. I suspect you already do this but make sure you keep a diary not symptoms. But far more detail. Morning stiffness and how long it lasts. Is critical. What happens when you sleep at night what time? Reaction to activities during the day. Pain isn’t enough. Believe it or not the most severe back pain comes from an almost inperceptable cause. Back in 94 they were mostly wandering about annular tears. They don’t any more.
BTW, I don’t want you to misunderstand what I’m saying. I DO think something is going on and you are right to aggressively pursue answers.But I think the answers are in your feet, hips and hands. Lower back pain is frequently a red herring. The foot thing scares the heck out of me. Given your age I have to believe that you likely have something very close to Ankylosing Spondylitis Be sure and include in you “diary” ANYTHING going on in your peripheral joints.
No worries, facts are good. I like getting insight from someone who seems to be well-versed on the subject. I also agree that I think the answers are in my hands and feet (and maybe hips, we’ll see). At the last rheum appointment, I flat out said “Is it really most appropriate to do the pelvic MRI rather than an MRI on my hands or feet, since that’s where most of my pain is concentrated right now?” Then she went into a brief spiel about how she doesn’t do MRIs on hands/feet.
It’s like she’s ignoring those because at the intake appointment she asked me what bothered me the most, and my answer was either the fatigue or the back pain… because none of my other joint pain has surpassed my back pain in intensity as of yet. But my hands and feet hurt a lot more than my back at the moment. This current episode started with a week of only back pain, then transitioned quickly into widespread joint pain not really involving my back much thereafter (with the exception of my hips, which isn’t my back but sometimes it’s ambiguous where exactly the pain is coming from so I tend to group them together).
My internet research at the onset of this flare actually led me to ankylosing spondylitis as a very real possibility; the age was right, the location of pain onset was right, there was additional joint pain, and eye problems. I was even more impressed when my new PCP came to that conclusion on her own at the first appointment, without hearing a peep about my own theories. She ordered full x-rays of the spine and a test for HLA-B27, and the x-rays showed no abnormalities and the test came back negative. I also have no family history of AS.
Shortly after that I started looking into rheumatoid arthritis, which didn’t fit the bill perfectly but was close, and that research led me to more information on autoimmune diseases. That’s when I realized that the skin problems I’ve been having for years 1) could be linked to the joint pain and 2) were probably misdiagnosed time and time again (“contact dermatitis”, “scabies”, “dishydrotic eczema”, “discoid eczema”) and seemed very likely to be psoriasis. I should’ve probably seen a dermatologist back in 2011 when my doctor was like “Wow those look like second degree burns!” and then brought his nurse in to show my legs off… they then proceeded to repeatedly give me steroid shots and prednisone and wondered why my “contact dermatitis” would magically reappear as soon as the steroids wore off.
Anyway, I digress. I do really strong believe that this is PsA, and my back pain seems to be linked in the same general timeframe as other joint pain (sporadic, though, not widespread until recently) and fatigue problems, all occurring a fews years after the onset of bad skin problems, including nail problems. That’s what leads to me think PsA over ankylosing sponydilitis, along with the negative HLA-27. I could be blessed and have both, or I could be bat-shit crazy and could have neither. I fear PsA, and I fear AS even more, but most of all I fear never having an answer and being told that it’s all in my head.
I’ll call and ask some questions about the MRI, since I need to figure out whether or not I need to fast anyway. The rheumatologist only described what she ordered as “having thinner slices” than the typical MRI, but that’s all I know.
Weasel, sorry if I’ve missed some details somewhere along the way. Have you ever had your bad skin issues diagnosed by a dermatologist?
Nope, I’ve never seen a dermatologist. I’ve moved around frequently and have never had a great opportunity to establish a good health care team, and most of the general practitioners I’ve seen in the rural areas I tend to live in have been less than impressive. I’ve also spent a fair amount of time uninsured and unable to afford see doctors. None of the general practitioners have ever even thought to refer me to a dermatologist for some reason. I can’t imagine how different things could be right now if I had done some research on my own years ago or if I had simply asked to see a dermatologist.
My skin problems have started creeping back in, after taking a hiatus since June. I convinced the rheumatologist to do a skin biopsy at the last appointment, but she wouldn’t do one on the active rash for concern of it not healing properly (it’s on my hand in between fingers). Instead she took a sample from my leg rash that started to reappear but then petered out pretty quickly again, so I’m not sure if it’s going to be representative of what the rash is typically like when it’s fully active so it may not lead to any diagnosis at all. My PCP told me she would do the biopsy if I just called in when my rash was active, but when I did that I spent 10 minutes arguing back and forth with the desk person who ultimately told me I would have to wait 3 weeks to get it done and that I couldn’t see another doctor to do it because my PCP’s schedule was booked. So I’ve just been documenting it with photos, which I wish I would have done when it first started.
Documenting it with pictures is an excellent thing to do, but I think it’s worth trying to get a biopsy on the rash when it pops up. Psoriasis has many faces, and it can mimic other skin conditions (as you probably know!).