LUPUS UK
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Query pins and needles in lips and tongue

Hi everyone, I am not sure if this is the forum I should even be on. I had a blood test August which shows positive ENA antibodies mixed connective tissue disease, appointment with Rheumatologist end of January. Reading some of the posts here there seems to be a lot of pins and needles, has anybody ever had them in their lips and tongue? I passed out five times in three years and think that in trying to find out why other things were missed, but this amongst inflammation and bad joint pain (and deformation) is driving me mad. GP just said she does not know why, neither does she know why left underarm is swollen for last two years. Any response much appreciated.

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Hello and welcome. Yes I have this horrible symptom affecting my lips and gums. It’s called burning mouth syndrome (BMS) and is often thought to be associated with dryness in the oral cavity and small fibre neuropathy - both often associated with Sjögren’s Syndrome. Sjögren’s is worth asking your rheumatologist about because it might be relevant to the swelling under your arm as well.

30% of us don’t have Sjögren’s specific antibodies but many have high ANA and some will get a lip biopsy taken to confirm or exclude it. I read somewhere that about 50% or more of those with BMS will also have Sjögren’s. My sister doesn’t have a diagnosed autoimmune disease but she does have BMS and tells me that “pulling” coconut oil has helped her a lot.

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Thank you for your reply Twitchytoes, the thing is it feels more like the tingling you get after having dentist injections, not burning. After my third blackout I woke up with it and it is still there every day all the time. Weird.

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Mine is the same EveWarwick. That’s why my specialists think it’s small fibre neuropathy. But in my case it doesn’t affect my tongue just lips and gums. Sense of taste very skewed too and numb face, feet, fingertips and weakness. Also I have faints/syncope.

All I can tell you is that I have Sjögren’s as my primary autoimmune disease plus Hypothyroidism. I was previously diagnosed with RA but that’s changed along with signs and symptoms.

As Melba says, these autoimmune diseases don’t usually fall neatly into boxes for diagnostic purposes. What you describe in your mouth and the passing out episodes are familiar to me and I’m sure to others. It’s a very fine balancing act between looking for comorbidities, getting a symptom written off as functional/ anxiety related, as BMS often is, or accepting it as part and parcel of your Lupus, MCTD or Sjögren’s or whatever. If it came on with a head bump from passing out then this makes nerve damage or neurological problems more likely I would have thought so you need to see a neurologist I’m thinking.

Have they got to the bottom of what caused you to black out yet? This might be key I’m guessing.

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Hello Twitchytoes, I have had loads of tests in the last four years including brain CT, or MRI, cannot remember. The blackouts occurred every time immediately after having a meal, once in a restaurant which was so embarrassing being carted off on a stretcher. I never fell as was always sitting at the table. The paramedics made me go that time as it was the third. I had a tilt table test recently which showed some kind of blood pressure problem, I have high blood pressure but apparently sometimes it can get too low, I googled and found there is a name Postprandial hypotension. This has taken all this time, and my driving licence was removed for a year, got it back mid December thank goodness.

I have an adrenal tumour, IBS, ovarian cysts (bleeding every month for three years despite having a hysterectomy 25 years ago, gynaecologist said it was normal for my age 68 then) osteoporosis, then last year fingers and toes bending and joint pain in ankles, knees and elbows. Just feel I am going from one consultant to another and getting nowhere. Maybe this time!

Thank you so much for your reply.

Eve

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You may want to look up PoTS and autonomic dysfunction. I’m being investigated for various aspects of this now too and have exactly the same issues with passing out occasionally while eating. I think someone on a Sjögren’s forum explained to me that this is due to blood and oxygen rushing from head to gut to deal with peristalsis? I think it’s something vasovagal? Anyway I’ve had a lot of these episodes recently - and my BP swings about a lot too.

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Hello! There are people on here with all types of connective tissue disease in addition to lupus so think it’s a good forum for you (and most of us share a variety of symptoms regardless of whatever actual label we get!)

I have had a lot of pins and needles since having lupus including in my cheek and lips, only occasionally in the tip of my tongue though. I haven’t managed to get any clear answers though yet! Mine tends to come and go relating to lupus activity levels but some people have it all/ most of the time. One neurologist told me it was hemiplegic migraine but another two rheumatologists told me it was a part of the effect of lupus on the nervous system.

Hope your rheumatologist appointment goes well

X

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Thank you Melba1, I will mention it to the rheumatologist, as I said to Twitchytoes I work up with it after a blackout and it is still there. These autoimmune diseases seem to be very strange and you never really hear about them apart from RA. I am not sure they are take as seriously as RA either because my DIL went to GP with joint symptoms in September and saw the Rheumy in December, same hospital. Me, blood tests August, Rheumy end of January!

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I was previously misdiagnosed with RA and yes it’s true they try to diagnose and tackle it early so as to avoid the erosive damage that often occurs in the first year. At certain points I’ve thought that this must be because they take RA more seriously than the other CTDs. But now I think it’s just that a) it’s much more common and b) so much easier to diagnose and treat.

There’s no way RA is taken more seriously by the medical profession than other CTDs such as Scleroderma and Lupus Nephritis or Sjögren’s non Hodgkins Lymphoma. But many of us come to these more rare CTDs through other specialists such as ophthalmologists, gastroenterologists, dermatologists, cardiologists, nephrologists and neurologists - who aren’t trained to identify, diagnose or treat rheumatic diseases such as ours.

This means that rheumatologists see so much more RA and can identify and treat it much more effectively. Also, the economic burden of RA has been studied and there are early diagnosis guidelines and clear treatment pathways for RA. So, with the NHS on its knees, waiting lists and rheumatologists focus on RA patients over the rest of us.

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So nice of you to reply again, thank you. You people on here seem to know so much, to me it is all a minefield at the moment, and with feeling exhausted and foggy headed a lot of the time, it feels a lot to take in. My GP only did this blood test in August because within the three months since I last saw her my fingers, little one and index, had become quite deformed, now gone to toes. Such a help being on this forum, years ago before the internet it must have been very hard for people, and having nobody that really understands how you feel. Eve

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It’s a very supportive community to be part of Eve. I do feel very lucky to be able to come here, despite not having Lupus. I have learnt so much over the past 7 years from friends who use this and other communities and from the charities who host them.

This is how I’ve learnt that many of my symptoms, similar to those you describe, are autoimmune and actually quite commonly experienced by people here. So posting about them on here makes me feel much less bizarre than I’d otherwise feel.

But one recommend is that it’s really good to do your own research using reputable sources because GPs as specialist consultations can be disappointingly brisk. So be sure to document stuff like passing out while eating and other seemingly bizarre symptoms. It’s a good idea to make an A4 sheet of bullet points - listing symptoms in order of severity and how they impact on your life.

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hi Twitchytoes, I said to my GP months ago that I thought the faints were due to auto immune system, she is good and has always said that GPs are not trained enough in that type of thing, and do not know enough about it, she does not rush me, unlike her senior who on meeting him for the first time six weeks ago told me to hurry up and get to the point because he was busy. First and last time. My family have a history of thyroid (including cancer) problems and goitres which made me think of it, even my daughter.

I did make a list of symptoms four years ago (19 in total) but found the consultants not really interested, probably lack of time. Like you my BP varies a lot and I am on Losartan too, and Doxasosin, I test at home each day and vary the strength accordingly, with my Gps consent. Have you kept your driving licence, that was an awful year without it as I live alone and my family all live some distance away, I felt isolated. Luckily we have a good bus service so I survived - just, it takes so long and I have a dog too which restricted me going long distances on the bus? Good luck with all your tests. Eve

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