Tingling: I have secondary SS, having... - The Australian Sj...

The Australian Sjögren's Syndrome Association
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Tingling

Annodomini
Annodomini

I have secondary SS, having previously had Polymyalgia Rheumatica and taken prednisolone for 6 years. I was able to give that up a year ago. However, aches and pains I didn't have with PMR have now surfaced - my knees have both quite suddenly become osteo-arthritic in the past year and I react badly to most painkillers, especially opiods. Steroid injections in both knees haven't had much effect. Just recently I have noticed tingling in my hands and forearms and sometimes also in my feet and think this must be a symptom of SS. It doesn't stop me doing things like typing (obviously!) and driving but is becoming increasingly noticeable. Am I right in attributing it to SS? I'm seeing the rheumatologist next month.

15 Replies
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Hidden
Hidden

I don’t think primary or secondary is relevant really - it’s which is your main disease and PMR generally only lasts for a few years max whereas Sjögren’s is usually for life. I was diagnosed with RA 7 years ago but now they think it was actually the Sjögren’s mimicking RA.

I think the thing that matters is whether you are seropositive or negative - this link I’ve just posted might explain: acrabstracts.org/abstract/s...

Supul
Supul
in reply to Hidden

Excellent research findings, Twitchy.

Hope you are having a better time of it. Sjogrens is the disease that just keeps on giving doesn't it?

Hidden
Hidden
in reply to Supul

Well it seems to be giving me recurring UTIs and bacterial vaginosis so I feel it’s the disease that keeps humiliating just now lol! X

Supul
Supul
in reply to Hidden

Oh, no, that's awful.

I had never, ever, had vaginal problems until sjogrens.

Last August, I had a UTI. Was given necessary antibiotics. Symptoms persisted but I felt vaginal issue too. Dr, after Dr, checked urine sample, wrote prescription. No vaginal investigation even though I explained symptoms.

After 3 lots of antibiotics, and worsening symptoms, I bought a vaginal swab kit (asda), result showed profuse bacterial infection.

Despite going to walk in centre, even taking swab with me!, I was told, take UTI antibiotics. Grrr... I left walk in centre, phoned GP told them hospital said you need do a swab of vagina! It was now December 22nd. I could not get GP app to Jan 5th!

Boxing day, I was very unwell, didn't eat, stayed in bed...

January 5th struggled to GP app, got swab done.

January 6th GP nurse phoned, "your test shows profuse bacterial growth, you need to collect prescription for broad spectrum antibiotic"!!

Yeah, I know, been telling so many Drs for the last 5 months!!!!

Suffice to say, the proper antibiotics cleared infection up, perfectly. I now use vagifem less art, once weekly, and all ok in that region.

I'm wishing you well, as its very unpleasant going through vaginal issues, as well as every other sjogren symptom.

Hidden
Hidden
in reply to Supul

Gosh that’s so like me. Only the general antibiotic for BV hasn’t worked either. But I do feel that it’s the bacterial infection they need to get on top of and then the UTIs will likely stop. And of course no one has asked to repeat the vaginal swab yet 🤷🏼‍♀️🙄😎

Supul
Supul
in reply to Hidden

Follow your instinct.

When I used the self care swab (cost around £10), it was distinctive in result saying profuse result, one of 2 types bacteria. That's why the test kit informs person to visit GP so that correct antibiotic given.

If Dr treating wrong bacteria, as they did in my care, (neglect really, as despite my request, not one Dr swabbed), you will keep getting recurring UTI, as I did.

In a final effort to help myself, get the antibiotic I required, I had no choice but to phone surgery and lie. It was only by saying that the hospital said they had to swab, that they actually did. (At which point I was so desperate, feeling I was becoming sepsis patient).

I have learned that unless we get the right medic, at the right time, we really have to fight our own corner. I truly believe, if I had not got that antibiotic 24 hrs after the swab, I would have become a hospital admission. And, I really, really, don't want that experience!

The only other thing I can think, is you may be suffering with interstitial cystitis. Though, you have been diagnosed with bacterial diagnosis, so clearly, there is vaginal involvement. Unsurprisingly, due to the anatomy of women!

You must get to the bottom of this. Excuse, no pun intended! Lol

Hidden
Hidden
in reply to Supul

Thanks so much. I will see if I can get the same swab kit tomorrow at Asda. Mind you the nurse said she’d phone and discuss the lab results and may agree to swab me first. Like you I feel sure this is the infection we need to address again - maybe one course of Amoxillin wasn’t enough?

The right doctor in my case is my woman GP but she only works 2 mornings a week. The man GP I otherwise tend to see seemed fine until yesterday when he made me feel like a time waster as he didn’t have my sacral lumbar MRI results yet and just seemed uninterested in whether the bacterial infection had cleared since he prescribed amoxicillin 2 weeks ago. He just kept saying we need the MRI results first? I think he has the idea that there might possibly be sacral nerve compression which is causing my fecal incontinence which is causing the e-coli infection which is causing the recurring UTIs. I guess this is possible but the severe bacterial infection still needs treating!

This will be my third course this year - last one was a UTI focussed one - can’t recall the name. This is my 5th UTI in a year. He said that Cystitis, kidney infections and Interstitial Cystitis are all common to Sjögren’s.

I don’t know if the bacterial/ ecoli infection is the cause of my genital and pubic pain though - is this how yours felt? - like pants are too tight and burning? It’s so terribly uncomfortable and distressing that I feel quite tearful when I’m out and about. But I don’t have burning when I pee at all and don’t seem to have the odour that usually attends BV?

I did get diagnosed and treated for UTI sepsis and they used IV Gentamicin with flucoxicillin on me 3 years ago - but after 8 days in hospital they finally realised that it was probably Azathioprine induced pancreatitis. Only the surgeon was a macho idiot and wouldn’t concede this on my discharge sheet so I was restarted on Aza by GPs and my rheum and ended up back in hospital for another week!

Sometimes I wonder if I have autoimmune pancreatitis adding to all this infection and high inflammation and intermittent unwellness as I have a really nasty IBS with it this time.

Whatever - it’s all extremely undignified! X

Supul
Supul
in reply to Hidden

My goodness, you have been, and continue to suffer so much.

Yes, I had the worst pubic, groin, back, and pelvic pain. It was extremely distressing.

My family tried to encourage me to forget how I was feeling, and organised a family dinner party. I tried to join in. I felt very unwell. Aching pelvic area. Groin pain, back pain, abdominal pain. A heavy dragging feeling. So bad! I left the table halfway through dinner. I went to lounge to rest, and my son found me crying uncontrollably. He phoned 111 who advised me to go directly to out of hours doctor.

Dr asked for urine sample. I tried to explain, as you say, no burning pain which usually get with UTI, it felt more like vaginal issue. Non the less, urine sample tested positive. Antibiotics given for UTI. I then had 3 lots of antibiotics, before my lie got me the medical intervention I needed.

Once the swab went to lab, the real bacterial infection was identified and I got the correct antibiotic, the very next day. Though, I was more or less bed bound for the five days taking the antibiotic because I had suffered, as you are, for so long.

I would never want to experience a vaginal infection again.

Yes, sjogrens patients do suffer more frequent UTI, interstitial cystitis, and kidney issues, however, women know their own body.

Please persevere. Get the swab redone. We have to look after ourselves. That ignorant Dr you saw, well, doesn't surprise me. What they can't see, just doesn't exist... he does not know what you are going through. You may have to teach him more than he ever presumed, about sjogrens, and women's health.

Hope you get over this awful setback, very soon.

Hidden
Hidden
in reply to Supul

Thanks so much Supul.

The strange thing was that my woman GP requested two swabs and a Pap smear but I only found out about severe e-Coli infection from GP when I saw him about possible Cauda Equina at physio’s request 10 days later. He told me about the swab results and showed me how all were all red. I asked him why no one has phoned me and he said results only just in. But ten days to get these kind of extremely positive results seems ridiculous and unlikely? Basically they didn’t notice for ten days!

I keep washing my parts with tea tree diluted in cool water and that seems to help for a while. I just wonder how long I’ve had this awful infection for though as my CRP and PV are pretty high always.

I’m having a stupid time with the sacral lumbar MRI results too. My physio referred me for this urgently but is now in holiday for 3 weeks so told me to ask GP after 4 days. So I made apt to see him on Monday morning a week after MRI, but results not in yet - so then he shrugged me off. I asked if he would notice if anything urgent showed on them but he said no because he hasn’t referred me and wouldn’t see my clinical portal unless I came in again. The only person who would be alerted even with a medical emergency would be my physio who is away. He could have just said for me to phone and ask and he would just check for me surely?!

So I was nonplussed and asked if he could expedite my neurologist referral - which I was referred for in March - have heard nothing yet. The physio and GPs are all wanting neuro input due to my problems standing and worsening neuropathy and peripheral weakness but he just said no he didn’t want to get involved.

I then asked if I need another vaginal swab but he said I shouldn’t. I think he is lazy and just likes patients with very straightforward, treatable complaints. I felt sad because until then he had been pretty switched on and even pronounced Sjögren’s correctly. Now I’m feeling that everything relating to my health has ground to a halt - or at best to a tortoise like speed! X

Supul
Supul
in reply to Hidden

I'm sorry. I know. It's so frustrating.

Eventually, my legs swelled, felt like lead. I couldn't walk from bed to bathroom unaided. My husband phoned paramedic I got my MRI immediately because paramedic concerned I had spinal compression. Results given straight away. Evidence of bulging disc, from previous prolapse discs, nothing more.

That's what got me to get the swab from asda. I knew I had something wrong pelvic area. I had been complaining of vaginal issue, getting repeat antibiotics for UTI. Something was now making my legs swell and feel very heavy.

Since I got diagnosed profuse vaginal infection, correctly treated, with the right antibiotics, I have not suffered swollen lead legs.

I really believe I was becoming sepsis. Of course, no bloods were taken at hospital. I had the MRI and they ruled out compression and sent me home. Once again, I had to find the cause so that I could get treated.

Hidden
Hidden
in reply to Supul

Heck we have both been so similarly affected by all this lower back, pelvis, leg weakness, infection and UTI stuff?!

I’m sure my MRI will exclude anything beyond lumbar degeneration. My legs are so weak but then my arms are even more so therefore sciatica or Cauda Equina wouldn’t explain this. My feeling is that the bacterial/ e-coli infection has been incubating for a long, long time and it was always going to take more than one course of amoxicillin to get on top of it.

I’m not sure exactly how it relates to my bowel/ IBS issues but it definitely does. I’m guessing there is some kind of nerve damage around my bum from giving birth to 3 large, back to front babies or from my small fibre neuropathy or both. I had lots of UTIs and pelvic pain prior to having children though - diagnosed as a young woman with NSU which initially they thought was PID. Nowadays I think it would be called Interstitial Cystitis but I’ve wondered too about pudendal neuragia. I guess I’ve just got to be patient and wait for MRI results. I’m sure they would find a way of letting me know if anything serious had shown up.

Mind you I had a sinus CT last year and was told it was all clear. But then a new ENT was checking for vestibular disorders and found some structural abnormality in my jugular vein that could explain my vertigo and pulsatile tinnitus when he reformatted the CT scan. He wrote to tell me this yesterday and I must say it does make me realise how much rests on the person interpreting our results! X

rosserk
rosserk
in reply to Hidden

Hi I have sjogrens a lot of the same problems you described in your post. Repeated UTI’s are common in people with sjogrens due to the severe dryness. I use Replens and it works brilliantly, you can buy in all the supermarkets at the pharmacy, it costs about £11.00. But you can also ask your doctor to prescribe it for you, read the following link and show it to your doctor if needs be.

ncbi.nlm.nih.gov/pubmed/164...

Also read the following from Conquering Sjögrens.

info.sjogrens.org/conquerin...

Hidden
Hidden
in reply to rosserk

Thanks - yes I think I’ve been very slow to pick up on this aspect of Sjögren’s - partly in denial because my main symptoms are the neurological ones and I have lost a lot of sensation in my vagina anyway so it’s not sore - the soreness is in my labial and pubic bone area. But also partly because my doctors have never mentioned it. I will get some Replens and hope it helps. I actually think the dryness might be further up and also my skin is very stretchy/ hypermobile so lots of scarring internally. X

rosserk
rosserk
in reply to Hidden

I have Ehlers Danilo’s hyper mobile type and Hashimotos as well as Sjögrens, the later both being autoimmune diseases. The pelvic discomfort is caused by the bacterial vaginosis and the BV is caused by Sjögrens I.e. dryness. You may not of noticed certain symptoms but you will definitely notice improvements. Can’t stress enough how much this will help, make sure you read both links. Good luck hope you feel better soon! 💐💐

Hidden
Hidden

I have Hashimoto’s too and probable EDS so your advice is very pertinent to me. I’ve read both links now - many thanks. Twitchy

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