It’s Simple: Who Gets Dactylitis or “Sausage finger”? | Rheumatoid Arthritis Warrior

It’s Simple: Who Gets Dactylitis or “Sausage finger”?

Dactylitis and diagnosis

A woman I know is an educated patient who has worked hard to make certain she is diagnosed and treated appropriately. Recently, she showed pictures of swollen fingers to her rheumatologist and had her diagnosis changed again. Her doctor explained that the swelling in her photo looked like dactylitis or “sausage finger.”

RA swollen handHer new diagnosis is Psoriatic Arthritis, based upon negative Rheumatoid factor and dactylitis-type swelling. I’ve heard RA patients use the words “sausage finger” many times and seen dozens of pictures. Nothing much surprises me in rheumatology any more, but I had to ask my friend Dr. Google how prevalent the notion is that dactylitis can’t be RA. I found a 1998 article about dactylitis characterizing the viewpoint:

“Compared with the wider spectrum in children, sausage-shaped digits have only a few known causes in adults: Reiter’s syndrome, psoriatic arthritis, sarcoidosis, flexor tendon sheath infections, and gout. In our series, the presence of dactylitis eliminated rheumatoid arthritis from the differential diagnosis” (emphasis added).

A 2007 article in the Journal of Rheumatology “Dactylitis or ‘Sausage-Shaped’ Digit” maintains this opinion:  “Recently, dactylitis has been included, due to its high specificity and sufficient sensitivity, in the classification criteria…” for Psoriatic Arthritis.

Here is a Johns Hopkins image of dactylitis.

Can people with RA have this type of sausage finger swelling too?

Have you? Does it have to be only one finger? And finger shapes vary. If it seems confusing, there may be good reason.

That’s because it is. It’s Too Hazy.

Two other conversations I had today seem to play in concert with this one. The topics:

RA swollen fingers

1) Lupus is listed as an “immune” disease on this popular list of healthcare topics for Twitter. Rheumatoid is listed as a musculoskeletal condition with osteoarthritis, osteoporosis, tennis elbow, and fibromyalgia. I can’t sum up the 600+ pages of rawarrior.com, except to say Not So Much.

I discussed it with someone from Symplur, but it’s hard to summarize, isn’t it? If you are unsure whether Rheumatoid is a systemic disease similar to Lupus or just a type of arthritis, please read some of the articles listed below as Recommended Reading.

2) Last month the ACR published new criteria for Sjogren’s syndrome diagnosis. Today I read “Sjögren’s criteria embrace multispecialty approach” and just said Wow, Really?

The patients’ diagnosis will be judged based upon a blood test, an eye test, and a lip biopsy. I love objective evidence. But wasn’t the whole world so distressed because Venus Williams has some terrible systemic disease that makes her joints hurt and fatigues her beyond belief. Well at least we were aware for a week or so last year. No mention of these prominent symptoms in the “multispecialty approach” baffles me.

The bottom line is that we don’t have a bottom line yet. We know too little about these diseases. It’s that simple. I mean, Complicated.

RA swollen fingers

Note: Statistics vary about the number, but a large portion of Sjogren’s patients are people with Rheumatoid. Until now, this was referred to as Secondary Sjogren’s syndrome. Newsflash for people with RA disease and Lupus: the Sjogren’s criteria article continued, “Furthermore, the distinction between primary and secondary forms of Sjögren’s may now be obsolete, the authors continued.”

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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32 thoughts on “It’s Simple: Who Gets Dactylitis or “Sausage finger”?

  • April 4, 2012 at 6:13 am
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    What exactly is meant by Sjogren’s no longer being secondary? Doesn’t really seem like that changes anything. My eye doctor says I have it. My dentist says at this time things look fine to him even though I have dry mouth. I don’t have a real diagnosis per say, but my rheumie just said, “all they do is treat the symptoms with Sjogren’s.” Since she doesn’t care if I do or don’t have it and my eye doc takes good care of me, I figure why worry about it. And if it is causing me joint pain separate from RA, how would I know?

    Oh, my foot xrays show a bone island on 4th toe, heel spur on L heel and calcification on R heel. Doesn’t say what the deal is with big toes, but I think I figured that out. Anyways, I spent a lot of time reading and I guess calcification can be caused by RA. Not trying to steal the thread, but anyone with those issues (esp the bone island) I’d love to hear what you have to say about it.

    Reply
  • April 4, 2012 at 6:21 am
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    Kelly, my favorite part of this article is the “Not so much.” It sums up a lot of my responses to folks who mistakenly have decided my RA feels one way or another, effects one thing or not another. I am the patient, and all the other patients, we know what is going on. Y’all, RA free, well… not so much.

    Hugs,

    Jennifer

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  • April 4, 2012 at 8:28 am
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    Other than having a high ANA titer, my blood work has always been negative for RA (and negative for any other specific autoimmune disease, for that matter). But I often have that type of swelling in all of my fingers. At my first appointment with my new rheumatologist, my hands looked pretty good and she said she was still reserving judgment as to what sort of autoimmune disease I had, given the lack of positive blood work and the fact that my affected joints only felt a little warm and inflamed. At my second appointment, my fingers were all swollen and as soon as she saw them, she said, “that looks like RA to me.” I also remember my rheumatologist specifically saying, “your fingers feel…. almost tight, right? Like they are stiff?” I was relieved that she understood how uncomfortable my hands felt, because for me, the finger swelling is almost always more painful than the finger joint inflammation.

    Now, my finger joints were also visibly red on that day, so I’m not sure if that also helped my rheumatologist reach her RA conclusion. But it did seem to me that, at the very least, the swollen fingers were significant to her and, given that she diagnosed me with RA at that appointment, the swelling certainly did not steer her away from an RA diagnosis.

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  • April 4, 2012 at 9:37 am
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    Confusing and hazy is right! I have an RA diagnosis, and my hands have been where most of my symptoms occur. Typically I’ll just have one joint on a given finger that is swollen, and some of my joints have likely become permanently enlarged. However, from time to time I will get a whole finger that swells up…like a sausage. The interesting thing is, when the whole finger swells, it’s not necessarily painful or tender. I guess I’m not really sure what qualifies as “dactylitis” — but finger swelling is something that I’ve seen!

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  • April 4, 2012 at 11:30 am
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    I am Sero negative RA,prior to my diagnosis I Woke up one morning with fire in all my joints and swollen all over. My hands were swollen especially my right hand which I always said looked like sausage fingers and the pictures you posted looks like my right hand, but for me it was all my fingers but my thumb was the worst and even though the swelling is mostly gone my thumb is still bigger than the one on my left hand.

    I also am Hypo-thyroid (autoimmune) and Celiac (autoimmune) In some articles I have read they say celiacs can often 3-5 autoimmune disorders. They did include RA in that list.

    So my question is who with RA has more than one autoimmune diagnosis besides me?

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    • April 13, 2013 at 6:33 pm
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      Yep, Michelle I also have an auto immune co morbidity Hypothyroid. I was diagnosed with RA when I was 26 after years of hand and wrist pain and weakness. I guess now it was all part of the same, I was always having a pulled muscles in my shoulder or somewhere else, just carrying the shopping would do it. Then I was diagnosed with Hypothyroid when I was 33, so now its called Hashimoto’s disease, this year finally it has been agreed I have Sjogrens, wow I could have told them that. I would love to have an RA doc that actually understands rather than saying RA only happens in joints with synovial fluid you can’t get it there thats got to be osteoarthritis etc. Though interestingly reading a thyroid blog recently many people were saying how not only their thyroid symptoms felt better but also the RA inflammation did after taking T3. When I see my RA doc next I will be asking about this for sure.

      Reply
  • April 4, 2012 at 1:22 pm
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    I have the high anti-CCP antibodies, positive ANA and high RF factor that supposedly definitely peg my diagnosis as RAD. I didn’t realize until recently, when the swelling began going down, how very sausage-like my fingers had become. I have thin hands and fingers and the swelling had crept up slowly enough, I guess, that I’d just gotten used to it.

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  • April 4, 2012 at 2:10 pm
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    This is interesting, as I have seronegative RA plus my fingers are swollen (not just the joints) and… my consultant has asked a few times if I’m sure I don’t have psoriasis anywhere (which I don’t). Maybe this is why?

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  • April 4, 2012 at 3:35 pm
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    I have mostly been in remission for the past several years, but occasionally have flares if there is a problem with meds…for instance, just had kidney stone surgery, had to take another antibiotic, so went off the Vibramycin/Minocin I normally take to control my RA. Had a horrid reaction to the other antibiotic given, was sick as a dog for a week. When recovered, resumed my antibiotic regimen, but apparently something has gone amiss and my system is not responding as it did previously. Having to double up on my very small dosage until things are back under control. Anyhow, just two days ago my right hand suddenly got painful, achy, the area around the wrist swelling up, and the fingers swelling ever so slightly, preventing me from comfortably making a tight fist. The symptoms are greatly reduced now, or I would send a photo. No question, this is RA, not some weird OTHER disease, causing my fingers to swell up. The complete ignorance about this disease among the general populace and also the supposedly well educated physicians who specialize in this disease just blows me away! We all need to study and learn as much as possible from each other, and be pro-active when it comes to our treatment choices!

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  • April 4, 2012 at 4:45 pm
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    This post is interesting in part for the application of symptoms (phenotype) to diagnosis (quasi-genotype), and in part because I know the individuals behind the blog (Kelly) and the post (“Patient T”). But I believe it was my tweet yesterday on the Sjogrens that may have set the stage for that portion of this blog post:

    RT @ACPinternists: #Autoimmune diseases: Sjögren’s criteria embrace multispecialty approach http://bit.ly/HGGL71 #pm101 #Rheum

    The reason I felt that this tweet warranted sending to my medical elective filing cabinet (i.e. hashtag PM101) was because of the last paragraph in the Sjogren’s link that reads:

    “Furthermore, the distinction between primary and secondary forms of Sjögren’s may now be obsolete, the authors continued. Because autoimmune conditions of the thyroid, liver, kidneys, and lungs can occur in Sjögren’s patients, and many diseases have autoimmune mechanisms, “It seems of little use and risks potential confusion to distinguish in a given patient one autoimmune disease as secondary to another. Accordingly, the diagnosis of SS should be given to all who fulfill these criteria while also diagnosing any concurrent organ-specific or multiorgan autoimmune diseases, without distinguishing as primary or secondary.”

    This has direct relevance to personalized medicine, which I preach, and to guest blog posts I’ve contributed to RA Warrior as well as those in progress for this site.

    Bottom line: no such thing as “RA” or “RAD”. Futile to try to pigeonhole all RA warriors into a single dx, or even handful for that matter.

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    • April 7, 2012 at 12:28 am
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      So Bob, are you saying we should all just be said to have autoimmune diseases and leave it at that? I am seroneg and have no xray damage (yet) or at least of the hands and feet and no swelling according to the doctors. I have had to fight for meds. Now with my current doc, I am getting meds no problem. I wonder if things weren’t viewed so narrowly if patients would have an easier time getting treatment in the beginning.

      Reply
      • April 7, 2012 at 1:59 pm
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        No, Jenn, that’s not what I mean. Will try to explain more fully shortly. Also, blog post coming out on this in another 6 to 8 weeks where I will cover in much detail.

        Reply
      • April 9, 2012 at 4:03 pm
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        Jenn,
        Home again.

        Answering my point about why there is no such thing as RAD, sjogrens, or any other disease you care to name: bottom line- most such named diseases, especially the more common ones, are merely “bins” to attempt to reduce complexity and (over) simplify disease management and treatment. Sine all but pairs of identical twins are genetically different, no disease is the same from one RAD-affected to another. The fact that that there are many different autoimmune diseases, subsets of which different RA warriors may have, further increases the complication of Dx & Tx. If managed in the historical one size fits all manner, many are destined to disappointment, since everyone is carrying a variation of an autoimmune theme, genetically-speaking. This accounts for the confusiing differences when people report their varying Tx successes and failures.

        While members of the RA Warrior community may readily be classified as “autoimmune”, further classification (and improved Dx and Tx) awaits exome or whole genome sequencing characterization and suclassification into bins separating people according to their immunogenetically distinct characteristics. This will provide greater customization of RAD patient care, and 19th century artificial designations like RA, sjogrens, etc may no longer be meaningful and some may disappear altogether.

        Bob

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        • April 11, 2012 at 11:50 am
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          Thank you for your reply. I guess time will tell, but just like autism is now going to be used for the whole spectrum I think there will always be broad names. Broad names are needed in the case of research and such. And honestly most people we come in to contact with don’t care about the specifics. Just give them a name and move on. I think the key word is disease. Arthritis is just one symptom although a big one.

          Reply
          • April 11, 2012 at 12:23 pm
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            Heh … some people are lumpers and others are splitters. I’m very much a lumper, except when it comes to proper healthcare, then I’m a splitter. 😉

            Bob

  • April 4, 2012 at 5:06 pm
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    What are they going to do…change my medical records for the last 10 years that say I have Sjogrens? Geesh. I do have a positive RA factor (not very high, but enough to be positive), and I get sausage fingers every couple of weeks..it’s never always present.

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  • April 5, 2012 at 9:25 am
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    This comes at an interesting time for me as I just had a really bad episode this past weekend with this issue of “Sausage Fingers”, but it affected my feet, arms and legs as far as the excessive swelling. Fearing that it was an RA Flare I called my RA Doc and his office got me in as quickly as possible. He patiently went through the assessment and we determined that this was in relation to other issues that accompany RA. Sjogrens being one of them and possible lymphatic issues that I had seen prior to being diagnosed, but was without insurance at the time and sought treatment at small clinics.

    My uncle who was my doctor and helped diagnose me stated it as a chemistry problem that refuses to be pigeonholed. I think he described it best when he referred to it as an “RA Cocktail” since it all deals with the immune response system in general and can strike when and where it sees a moment of weakness in the system.

    As of yesterday the numbness and swelling that accompanied this episode disappeared just as quickly as it appeared last Thursday. No reason why, just faded away.

    Reply
  • April 6, 2012 at 5:33 am
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    “Sausage finger” is usually due to a flexor tenosynovitis flare (with or without the joint synovitis itself). Since F.T is very common on both Psoriatic arthritis and R.A.D, I can’t see any reason why physicians exclude its relationship with the later, although I’ve read some literature that remarks that extensor tenosynovitis is kind of rare on R.A.D

    I agree, unfortunately we don’t know much of these diseases. Glad that in absence of that knowledge, we’ve been able to develop drugs able to “manage” them.

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  • April 7, 2012 at 9:31 pm
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    I have “sausage” toes. When my RA doc referred to them as such I was highly offended( bad enough to have a multitude of deformities but to give it such an ugly, common name seems all the more cruel ). He informed me that sausage toes are quite common in RA patients. Makes you wonder. If the docs can’t agree on what is or is not a part of our disease then how will they ever figure out how to cure it.

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  • April 8, 2012 at 10:03 pm
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    Just amputate that “sausage toe.” That was the plan. I was fairly certain that I had an RA disorder that caused one of my small toes to be swollen, painful, warm and red – the classic dactylitis toe, and that caused the mega-inflammation of my foot. My Mom had a rheumatoid disorder. Each of my four sibs has 1-3 mild-to-serious rheumatoid disorders. Since my family history includes 5 first-degree relatives with RA, that might have been the first diagnosis to consider. Instead, a variety of doctors came up with increasingly bizarre diagnoses: MERSA (the “flesh-eating” staph bacteria) for which I was hospitalized and treated with several antibiotics, although none of my blood work had shown any indication of infection before or after my toe swelled. Complex regional pain syndrome. The urgent care doctor threw that one at me with an RX for gabapentin and a referral to some expert on it. Over and over I was treated for infection, although my white blood cell count was completely normal and, other than the pain, I felt well. I literally begged my PCP to refer me to a rheumatologist. She refused. Specialists within the absurd health care system in which I was trapped could not refer me to other specialists, like rheumatologists. Just my stubborn PCP. So I went to an independent podiatrist. She looked at the list of antibiotics I’d been given, shook her head, and decided that I must have a terrible, drug-resistant infection. She made the logical error that because I had been on an antibiotic, I must have an infection. She decided that it was a terrible infection of the interior of the bone, and scheduled a surgery suite for an amputation of my toe and part of my foot for the next month. My husband and I looked at each other. The incidence of osteomyelitis (bone infection) is 1/50,000. It almost always follows surgery or injury that directly exposes the interior of the bone to bacteria. How likely was her scenario? Thanks, but no thanks, lady. I scrounged until I found a PCP whom I wouldn’t trust to treat a hangnail, but who would give me a referral to a rheumatologist. It took me seven weeks to get appointments with those doctors. During those seven weeks, all of my symptoms – eye problems, inflammation, pain – went into remission. Had I seen a rheumatologist during that period, I might have been spared the mother of all flares that hit me a week before I saw the rheumatologist. Or I might have received quick treatment for it, before permanent damage to tendons, ligaments and joints occurred. Now I live in chronic pain. At times I cannot walk, lift a mug, hold my grandbabies. I get 4-5 hours of sleep a night. My husband is the best, and I have much for which to be grateful, but our lives are compromised. If I, who am not a medical professional, could recognize dactylitis, would couldn’t doctors, especially a podiatrist? If I, who am not a medical professional, could factor in my family history in proposing diagnoses, why couldn’t doctors? And why, in the name of Heaven, did the medical monopoly that controls health care in my community, absolutely refuse me care from the one specialist who actually had an arsenal of tools that could help me? Thank you, Kelly, for all that you do to educate people about RA, and for the incredible research you do, the excellent questions you pose. We all have to educate the rest of the world about what we live with, and its cost to all of us. Hang in there, everyone.

    Reply
  • April 15, 2012 at 11:32 am
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    So, are they trying to say there’s a difference between RA swelling and sausage fingers?? I have Adult Onset Still’s (in remission) — a disease they didn’t mention and it comes with sausage fingers. But in my ultra-rheumatoid family, I’ve seen lots of fingers that looked nearly as swollen.

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    • April 15, 2012 at 11:48 am
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      Yes, the literature seems to say that if a single joint swells that’s RA-type swelling, but whole digits is not. This is not what we are seeing with patients in their stories or photos, but this is what is on the books.

      I hope your remission lasts forever.

      Reply
  • April 16, 2012 at 10:30 pm
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    Oh my, I’m in my busy season at work so I have not checked your blog in a while but I’m compelled to respond. My initial symptom was a hugely painful sausage finger(pointer finger). It was November 2010. I thought I jammed it, put it in a splint, took a ton of advil (didnt help, shoulda been the first clue) and it disappeared after about 4 days. Fast forward to March 2011 after no other symptoms, same finger, opposite hand. I thought it was too strange so I went to the dr. He was postitive it was gout, but x ray and uric acid test was negative, so was the RA factor. Again, it went away in 4 days. Again, fast forward through most of the rest of the year, till December with little in the way of any painful issues, just some “weird” stuff. (dry mouth at night, bone spur, and sore jaw, thats it) December 24, I had my first full blown flare, frozen shoulder followed by knee and so on every several days. The dr. finally did a ccp test which was off the charts and identified it as RA. Since the diagnosis, I have never had a sausage digit again during any full blow flares. I find this strange, and get no satisfactory response from my Rheum on this topic. It was just weird, almost like an indicator light. No one has even mentioned Sjorens or Psoriatic to me. I can tell you that it was as painful as my full blown shoulder flares , started at night and woke me up, and was untouched by any amount of advil. Thanks for addressing this Kelly.

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  • March 13, 2013 at 1:30 pm
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    Im still waiting for my correct diagnosis. The doctor says its either RA or Ankylosing Spondylitis. Honestly Im starting to wonder if it isnt both. I get sausage fingers almost everyday when I wake up. I also have sausage toes and swelling on the bottom of my feet. My 2nd toe on my left foot has swollen up very badly for several years. Doctors thought it was chilblains. It gets hot to the touch sometimes and actually looks a little like athletes foot but its not.It is very painful! I also have swelling in both my ankles and knees among other things. All I have to say is just say no to amputation! Even though sometimes this sounds like the only way to relieve the pain! (Im Kidding) -Heidi

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  • August 18, 2013 at 3:22 pm
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    WENT OUT OF WORK DEPRESSION/ANXIETY 1986.
    I WAS TOLD I HAD SLE IN 1991. MONTHS FOLLOWING; ASTHMA, SJO., FM AND MISC OTHERS.
    2011 HEART ATTACK, FROM LOSS OF POTASSIUM. 2 ANGENIA ATTACKS FOLLOWING. LOTS OF TESTING.
    2013 CHF
    NOW My story for anyone out there hope you can help me????

    FRIDAY Nite developed a nodule on my little finger (really hurt while it was being made).
    THEN another was formed last night, it keep me awake (even on pain medication).

    WITH LUPUS YOU DON’T GET BONE NODULE. I MIGHT WITH A.S.ANKLOS.SPOND., NOT WITH OSTEO PORSIS OR OSTEO ARTHRITIS
    THAT I COULD TELL BY MY RESEARCH……. DO U THINK THAT MEANS I ALSO HAVE R.A.???????????? BROTHER JUST DIA. WITH PSOR.- ARTHRITIS

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  • October 14, 2013 at 3:33 pm
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    I agree with the text. Sausage finger is a nice analogy that I use in teaching human pathology.

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  • October 28, 2013 at 12:42 am
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    I have a swollen parotid gland and have very dry eyes…was given a blood test ( I think) and Sjogren’s syndrome was ruled out. My salivary action seems ok, but eyes still dry, any connection. Parotid up and own all the time diagnosed as benign with ct and aspiration. But now have “floaters getting bad in left eye. anyone have any input of similar Malaise. Of course combined with the RD not sure whats what sometimes, lol.

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  • January 30, 2016 at 12:11 pm
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    I use a ring sized to fit my samllest finger when swollen. In the mean time, I move the ring around to different fingers wherever it will fit. This ring gives me an objective measurement for how swollen my fingers really are. My rheum liked the idea so much, he has shared this method with other patients. He calls it an objective measure of disease activity and encourages recording the measurement to predict patterns.

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  • February 16, 2016 at 8:31 pm
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    from the photos I would say she has a mild case compared with mine…

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  • March 10, 2016 at 2:30 am
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    As a sufferer of arthritis, with sero negative sjorgrens syndrome, it seems obvious to me that if glands that produce moisture are no longer working, then the fluid has to go somewhere. I’ve had problems with pain in my kidneys, my water is very strong despite drinking plenty of water. Now I have swollen fingers! Where in the body is the water going to go? That’s my question. I have osteo arthritis not Rheumatoid. So what’s causing the swelling of my fingers. Surely it makes sense to ask the question where is the fluid going? Perhaps someone might take this question and consider it. Thank you

    Reply
  • August 27, 2016 at 11:13 am
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    I love this idea! Wow, I have awful sausage fingers today, which is how I came across this post. I was actually looking for essential oils to put on my fingers to reduce the symptoms and pain. I say “fingers” plural because although the main flare is in the left hand ring finger, stiffness and pain is radiated to the pinkie and the middle finger as well. I have psoriatic arthritis, but sausage fingers didn’t come until several years after my initial diagnosis in 2007. It’s one of the worst parts of PsA because there’s absolutely nothing to do for relief. Sigh. Anyway, just venting I guess. But thanks for this great idea. I’m going to implement it and keep a record. 🙂

    Reply
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