Puffy or swollen fingers (dactylitis)?

Hello – I was wondering if anyone here had ever developed puffy or swollen fingers from Lyme or co-infections? I don’t mean swelling of just the joints themselves, but rather the whole finger becoming puffy and swollen. I don’t have the “sausage fingers” look yet, but there is visible puffiness and swelling of all my fingers. The swelling is soft to the touch, and any indentations or marks last for a while.

My rheumatologist (who thinks I have an autoimmune disorder rather than Lyme symptoms) had mentioned to me in the past that once I get swollen fingers, I should be on some kind of long term medication to prevent permanent joint damage. (I guess swollen fingers, or dactylitis, is a hallmark of things like psoriatic arthritis or possibly scleroderma as well?)

My LLMD is obviously reluctant for me to start any rheumatological medications that might interfere with Lyme treatment (even though the med my rheumatologist suggests starting with, sulfasalazine, is supposedly not really an immunosuppressive).

If others here have dealt with this kind of finger swelling and have had relief with Lyme treatment, I may try to stick it out with my LLMD. It sounds like the next step for me would be rifampin. (He had discussed starting me on rifampin months ago, but decided to try another protocol first because of my concerns over side effects.)

Thank you, as always, for any thoughts

You are articulating, perfectly, exactly the same thought process that I've spent months going through (including wondering whether boosting my immune system would actually be harmful if I'm having autoimmune-type symptoms).

I have doctors arguing both sides to me, and it makes it very hard to know what the right decision is. Rheumatologists uniformly do not believe that continued Lyme treatment will be helpful. The LLMD obviously disagrees. My former primary care doctor (an excellent doctor who, unfortunately, no longer takes insurance) believed that I should continue to try to treat the Lyme aggressively, and not to go on an aggressive rheumotologic medication unless X-rays or other imaging showed the beginnings of some joint erosion. And so on. I spend a lot of time reading medical studies and abstracts, and it's definitely true that the rheumatologists' view is the more widely accepted.

There is so much variability in what causes different illnesses in different people, and so it makes sense that some treatments would be miraculous for some people but completely useless in others. I'm thinking, for example, of the subset of autoimmune patients (people with rheumatoid arthritis, scleroderma, psoriatic arthritis, etc.) who see miraculous results on a long-term antibiotic protocol (AP). For people whose autoimmune symptoms are the result of some bacterial infection, such as mycoplasma, it makes sense that antibiotics would provide relief. But for people whose autoimmune illnesses have some other origin, the AP approach may be completely useless.

At this point, though, I really am hoping to hear if anyone else has dealt with the puffy-finger issue and if Lyme treatment helped. I seem to recall some discussion of this way back, here or on another Lyme forum. It would be helpful just to hear people's experiences, whether or not the Lyme treatment was successful.

I had swollen fingers years ago. Sausage like but hard if I can remember. Not all but severalIt may have lasted a couple months then resolved... I had a lot of small finger joint and hand and wrist involvement. Both hands. Ra like in expression. That was a very early symptom for me. That was 10-12 yrs ago maybe. That came and went and didn't return.

Thank you all so much for these very helpful responses.

Lightlife, I think you've responded to some of my posts in the past, and your replies always give me a lot of comfort. I really appreciate them. Just knowing there's a possible light at the end of the tunnel for some of these issues means everything.

Saraeli, thank you for your very kind and thoughtful response. The last time I had any rheumatologic bloodwork done, I din't have any markers for RA ... but I know that some illnesses (such as psoriatic arthritis) typically don't have any obvious markers.

It really can get overwhelming trying to figure out these kinds of questions, which are so important for us but apparently not that interesting for a lot of doctors. (Several of my friends from college are doctors -- none, unfortunately, with expertise in the areas I'm most interested in now -- and they are such intelligent, intellectually curious people. But it seems not all doctors are, or maybe the time constraints imposed by insurance, etc., mean that they don't have the time to exercise that curiosity.)

jb1994, I don't actually know anything about MCAS/histamine reactions. I will do a little reading on that; thank you.

JovaLyme, once again you have articulated so many of the things I've been thinking about (and also some things I hadn't even thought of). I am sorry you're going through this, and I hope very much that you find some answers and lasting relief.

I've actually been reading about different kinds of fasting as well. I'd never seriously thought about doing any kind of fast -- partly because I'm small (what my friends call "pocket-sized") and don't want to lose weight, and partly because I'm the kind of person who seems to get jittery and unwell (maybe slightly hypoglycemic) if I go too long without eating. The latest thing I've been looking at is one of these "fasting-mimicking" diets. (There's a company that sells one that has some real scientific credentials behind it.). If I do that, I'll try to report back here on how it goes.

Thanks again for all the responses. This board has been such a lifeline to me at times when I'm feeling really scared or stressed.