Non-tender Dactylitis?

To date, I have been spared sausage digits - or so I thought. Over the last few months, I have noticed that my right pinky toe has been pink and swollen. It isn't something I noticed daily as it did not cause pain. I assumed each time I saw it that my shoe was rubbing on it and causing the swelling and pinkness.

Well, yesterday I fed my extended family an early Christmas meal. I was on my feet from 7am until 5pm. I took off my shoes and laid down to rest from 5pm until 9pm. When I went to bed, I took off my sock and my pinky toes on both my feet were bright red, shiny, and swollen. They were also warm to the touch, but painless. Since I hadn't worn my shoes and had been off me feet for 4 hours, I realized that my shoes have not been causing this.

From what I gather from internet reading, dactylitis is painful. Is this always true? Has anyone experienced non-tender sausage digits? I don't want to bother my doctor if this is not a true problem, but it definitely seems strange that my pinky toe is almost always swollen and pink lately.

Miz Que

My my right pinky toe is swollen and red as well with little pain. It’s true that overtime dactylitis typically lessons in pain, but from experience it hurts.

I don’t think I have dactylitis, I think its psoriasis finding a new home.

I don't always have pain with dactylitis. The pain seems to be the worst when things are first starting off or when there's damage from longstanding inflammation.

Call your rheumatologist and talk to your nurse! Maybe they will allow you to send pictures in or get an emergency appointment. There are several reasons why your toes are swollen.

To answer your question. Yes you can have sausage toes and no pain. This typically occurs when a significant amount of damage has been done.

All my sausage toes have hurt, except for my current problem.

This is a really old thread, but since it’s been several years since anyone has commented, I wanted to re-ask if this is something that anyone is familiar with. Internet searches on non-painful dactylitis (or “cold dactylitis” as it seems to also sometimes be called) bring back only a handful of unuseful results.

I’ve recently realized that my experienice has been very similar to what Miz_Que described. In short, my left pinkie toe began turning red periodically back in January, but it didn’t hurt, and I assumed it was simply some benign winter cold-related thing (like chilblains) or simply irritation from my shoes. Fast-forward five months into warm late spring, and it’s still happenening, but the toe is now usually visibly red, rather than just occasionally red. Plus the right pinkie toe is beginning to look the same…

I have a doctor’s appointment coming up and will probably mention it, but part of me just feels really silly bringing up toes that turn red but don’t usually hurt… And I’ll be so embarrassed if I’m told to just try wearing different shoes.

As a side note, I’ve read that dactylitis tends to be non-symmetric. Have you found this to be true?

I don’t have experience with this… but you should tell your doctor about it. I get the feeling though! I struggle with that myself… but you should tell them everything so they can decide if it’s something important or not…

Hi. My toes have been red and fat forever, all through adulthood. It’s not a good look. They don’t match the skin tone everywhere else and the plumpness isn’t typical of me either.

I think my feet are two brave soldiers, they’ve been formed, or rather de-formed by PsA more than any other part of me but they still function okay most of the time. Over the last year or so however, pain, especially in toes, has inhibited or prevented walking on quite a few occasions.

I mention foot pain at every single appointment but I’ve never said anything about the redness, it’s too low down the long list, and dactylitis has never been mentioned though it has occurred to me. If you do get time to mention it at your appointment, then jump in. I’ve noticed that ‘small’ things can be relevant … I mean, who would have thought that pitted nails could be significant at the diagnosis stage?!

Shoes are mega-important for anyone with PsA but it’s something you can experiment with yourself if you don’t want to have that conversation with your doctor.

Thanks, I did mange to squeeze it in at the very end of my appointment (probably one of those “just one more thing” moments that doctors hate), and the rheumatologist didn’t seem concerned… probably because I talked about redness, not pain. The GP as well has kind of brushed it off as some form of Raynauds.

So perhaps it’s nothing of significance? I’ll have to switch doctors later this year due to moving, so I’ll see if I can get the new one to at least do X-rays of my feet since my current one just did hands and pelvis.

PsA does seem to cause a lot of things that are considered insignificant by one rheumy but possibly rather more significant by another. I guess skin redness without pain or difficulty walking probably isn’t too important … but it is good to know what is & what isn’t PsA related.

The longer I have this disease the more I want rheumys to educate me. I don’t see mine that often and usually there’s nothing major to report so there is a little bit of time available for, basically, helping me understand who I am these days! I wouldn’t even use the phrase ‘understand what is happening to my body’ because the disease is here to stay and is more fundamentally a part of me than that phrase suggests.

I agree that x-rays may be more useful at this point than fully understanding the redness but keep it on your list to clarify over time … the learning goes on and on!

You want to be careful to avoid the use of medical terms when describing syptoms to a doc. They figure someoneelse has dealt with it or you spent too much time with Dr. Google. For MOST the pain is a one-time occurence with “Sausage Toes” during the first acute attack. (Your best search BTW is Sausage Toes with Psoriatic arthritis as Dactylitis is something a bit different and is charted differently as it is usually acute/painful while what happens with PsA is usually chronic and red) It is usually a very quick progression to aggresive treatment as it is a significant finding and precedes, barely, permannet damage. If you are already on biologics Docs don’t think much about it. Its simply one of the Key Diagnostic symptoms. Prolly why @Sybil doc doesn’t pay a lot of attention. No question what she has and it needs treated. Read on of the earlier studies here

I’m very aware of this pitfall. But increasingly I do use medical terms … if they’ve become part of my vocabulary it seems only honest to do so & these days, if I’m less than sincere, I get confused! I try to briefly establish that I’m using the right term and then, if I am, the doctors tend to use it when talking to me too. Once they know that I understand some things they miss out the explanatory detours which saves time. Works better once we’ve established something of a relationship with the doctors I think.

Really helpful study, that one. I’ll remember this bit: " … may be acute, with painful inflammatory changes, or chronic, where the digit remains swollen despite the disappearance of acute inflammatory changes." I guess that’s of interest to you too @amy1304.

Hey y’all.
Idk really what that is but every one of my toes get blood red and hot not really like a fever but idk how to explain it. But I’ve noticed it only happens when I’m outside in the heat, Sun for even a short period of time. This just started happening recently too. Estrogen or PsA? Could it even be dactylitis?

Doctor-patient dialogue is an interesting topic… I really do try to pay attention to the language I use when speaking with health professionals. We’re all human, and we all react either consciously or sub-consciously to tone, wording, vocabulary, etc.

I’m always worried about prematurely influencing a doctor’s thought process by using a specific technical medical term or unintentionally coming off as a snooty Dr. Google know-it-all (even if I’ve spend a week or two with my nose buried in dry, medical journals). In a way, it’s the classic difference between precision and accuracy — a number can have a lot of digits to the right of the decimal point and be very precise but also be totally inaccurate. If I were to describe in layman’s terms a red and painful toe and then have the doctor call it dactylitis, I’d feel more confident of his opinion than if I myself suggested dactylitis and he just confirmed it.

At the same time, I also understand that just by reading the literature, I’m at risk of cherry-picking symptoms that I think are relevant and not just laying out everything as though I hadn’t done any research… But I couldn’t imagine not trying to self-educate. That’s why we’re all on this forum, right?

BTW, an interesting read is “What Patients Say, What Doctors Hear” by Danielle Ofri. It’s a fairly candid take by one doctor on the dynamics of doctor-patient conversations, the pitfalls of poor listening, and what doctors (and patients) can do to improve mutual communication.

Doctor-patient communication is worthy of some thought, that’s for sure. I’ve heard of that book and might take a look.

There’s a TV programme here in the UK called ‘GPs behind closed doors’ which shows GPs’ consultations with patients. I play ‘spot the condition’ and also find myself analysing how patients get the best out of the doctors (while allowing for the fact that the GPs are probably upping their game for the cameras). So far I can’t see really see any pattern although possibly body language seems as important as what is actually said.

I think you can’t beat finding a good doc & sticking with them and then with luck, in time, we all understand each other.

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I wholeheartedly agree Sybil. Sometimes you have to search quite hard too but the effort is so worth it.

I read (and indeed still do but to a lesser extent) medical reports for a living. So it never occurs to me to deliberately not mention medical terms, if I understand what they mean. I’ve found almost all doctors I’ve consulted are relieved by my apparent comprehension. They’re probably less relieved when I then proceed to engage them a dialogue where I’m requiring them to ensure their conclusions (as regards me) are indeed the right ones.

I’m a rather demanding patient in that regard and if I get a sniff of being ‘palmed off’ I take it to task and force the issue.

The only place this falls down for me is with my GP surgery in the UK as you can’t get to talk much to a doctor there and indeed rarely see one either. Then I just write them a letter. They don’t like my letters but those letters always get the required response.

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