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Could this 'bitter' taste in my mouth be SS?

Posted , 7 users are following.

mrspinkrat
mrspinkrat

Hi all

I'm new here

About 6 months ago I noticed a 'bitter' taste in my mouth. Some days it was unbearable but then I'd have a day or so where it wasn't so bad...

I've tried all sorts - vitamins, total change in my diet, changing my medication (levothyroxine), biotene mouthwash....

Dr is at a loss and I've recently been referred to a gynaecologist (no periods for 9 months)

I also have dry eyes (confirmed by optician), an unexplained persistent dull ache in my groin/hip and latest sympton is ringing in my right ear! Sigh...

I'm 44.

My mum had RA from her mid thirties but it affected her joints only.

What do you guys think?

Should I push to be tested for SS?

It's the bitter taste/ dry mouth and sore tongue which get me down the most sad

Thank you!

1 like, 14 replies

14 Replies

  • charles79548
    charles79548 mrspinkrat

    Posted

    When I was dealing with SS at first I had the dry mouth dry eyes and I lost my taste and then things like Coke did taste bad an awful taste. I went to a Rheumatologist she was the 25th Doctor I had seen and she was able to diagnose me with SS. She had blood test ran, but it did not come back poistive for SS, so she had me do the lip biopsy, which did come back positive for SS. Be adived if you decide to have the lip biopsy it is very painful to have done. The Rheumatologist prescribed Evolax for the dry mouth which did help me make salavia. I also went to a Holistic Dr who had me on several natural supplements that I took for about a year and half and then one day out of the blue everything cleared up. But to my disappoitment the dry eyes have come back and I have developed a severe breathing difficulty that no Dr has been able to diagnose. When i did have the bad taste in mouth my tongue did also hurt or burn.
  • lily65668
    lily65668 mrspinkrat

    Posted

    Sounds like it could be Sjogren's to me. And that pain in your groin sounds like arthritis in your hip. That's where I used to feel it in the days when I had RA. In my late 30s I suddenly got it all over my body and it was sometimes so bad I would fall over in the street because my hips wouldn't support me. I saw a homeopathic rheumatologist, who treated it mainly with diet, and I've hardly had any problems in the last 30 years. I stress I'm not advocating homeopathy, btw, as I know the idea makes some people very angry.

    I see you're on thyroxine (like me) so you presumably have an under-active thyroid. That often goes hand-in-hand with SS. Hypothyroidism also causes absence of periods (or - paradoxically - frequent, heavy periods) and I think it can also be associated with an early menopause. My periods stopped just before my 45th birthday, though I wasn't diagnosed with SS till 15 years after that (after nearly 10 years of symptoms) and an underactive thyroid yet another five years later, at age 65.

    Sounds to me as if you should get yourself tested if you're in a country where they accept the existence of Sjogren's. And don't worry too much - spontaneous remissions are quite common. I'm 70 now and have been more or less symptom-free for about five years.

    • simonft
      simonft lily65668

      Posted

      I stumbled on this forum after searching for what the recently acquired bitter taste in my mouth might be. I was dumbfounded when the poster seemed to be describing identical symptoms to myself, i.e. dry runny eyes, pain in hip, as well as the bad taste. I additionally have aches and stiffness all over my body now, including in my hands and wrists, shoulders, knees, ankles. I am a 43 year old man and can't help feeling that I should not be experiencing this at my age!

      You mentioned a homeopathic rheumatologist... I haven't much faith in conventional medicine I'm afraid, having been passed from pillar to post for years now, but I wondered if you received your homeopathic treatment on the NHS? I'm at my wits end with it all! Thankyou kindly in advance. Simon

    • lily65668
      lily65668 simonft

      Posted

      Simon, I don't know much about the modern NHS. I worked in it (as a nurse) in the 60s and 70s but have lived on the Continent for the last 40 years. In my adoptive country all homeopaths have to be fully paid-up doctors, and patients get a small reimbursement from the State insurance system for consultations. Someone else on this forum might have info, otherwise you could try Googling it.

      I believe it was the very simple dietary advice that had as much effect on the arthritis as the homeopathic medicine. In those days (when I was a bit younger than you are now) I was an absolute chocoholic - couldn't get enough of the stuff. My other passion, somewhat bizarrely, was rhubarb. Throughout the season - Feb to Oct here - I'd get through a bunch every week. I also drank a lot of coffee. The homeopath told me only to have all three as occasional treats, as they all (especially the rhubarb!) produced chemicals that mimicked uric acid in the blood. The terrible joint pains and stiffness cleared up quite quickly after that and have never really come back in the 35 years that have passed since then.

      When I first started getting Sjogrens symptoms - about 15 years after the arthritis episode - I saw a couple of homeopaths and tried various different remedies but I can't say anything really worked. It seemed more as if the Sjogrens simply ran its course over the next 10-15 years and burnt itself out. I've been in almost total remission for five years now, apart from a few eye problems at the moment.

      One thing I'm convinced might have affected the arthritis (and maybe the Sjogren's - who knows?) is fish oil. Every time I go to the UK I come back loaded with those extra-strength Seven Seas capsules. I've taken them religiously every day for 30 years now and have no plans to stop.

      Don't be too downhearted. A lot of auto-immune conditions go into spontaneous remission sooner or later. Try looking at your diet to see whether there's anything that seems to make you worse (but without getting too faddy). Don't over-exercise at times when your arthritis is worse - but try to do enough not to lose movement in your joints. And I think your instinct to stay away from doctors is a good one! They'll want to put you on steroids sooner or later and that's a sure way to mess up your immune system and make things worse, rather than better.

    • simonft
      simonft lily65668

      Posted

      Thanks so much for replying so promptly! I try not to be too downhearted, and I'm convinced something out there will help me, and who knows, perhaps it'll be your advice! I do drink a lot of tea and coffee, I'd demolish any amount of chocolate and biscuits if I weren't quite strict on myself, and I take a lot, around 5 grams, of ascorbate (vit C powder) daily,  which is quite acidic, even when mediated with bicarbonate of soda. 

      I've tried experimenting on cutting down on the vit C to 1 gram a day but I'm slightly worried by this as I've been taking it as a protective measure against heart disease, as I suffer from a hereditary condition.

      Lots of bread seems to aggravate it, so I'm careful with that, as does heavy meat consumption, so I'm beginning to be careful with that too. 

      I used to be a vegetarian but now eat meat and looking back things seem to have got worse from the time I started eating meat again, about 6 years ago, but perhaps that might just be the progression of the disease and nothing to do with meat consumption.

      I took statins for a while and stopped them because they definitely made things much worse.

      If I excercise or work too hard I really pay for it a few hours later!

      I am currently about to try Boswellia and Curcumin as I'm convinced the whole thing is caused by widespread inflamation. A few weeks ago I had some mystery virus and felt very under the weather. My girlfriend got me some cold and flu with paracetamol. These made me sick so she got me some Nurofen cold and flu. Not only did these make me feel much better, my arthritic symptoms miraculously cleared up, for about a week! It wasn't just the painkilling effects, as I've had stronger painkillers eg tramadol and codeine after an operation and these did little to counteract my arthritis symptoms. I'm convinced the ibuprofen took down the inflammation resulting in free movement. Alas, the side effects synonymous with pharmaceuticals soon presented themselves... I got horrible stomach aches after about a week and stopped taking them. The arthritis came back with a vengeance about 2 days later. I'm now convinced however that if I can fight this inflammation "naturally," I'll be free of it.

      Ps I've never been diagnosed with Sjogrens, but my eyes seem to alternate between constant weeping at night and first thing in the morning, and dryness through the day.

      Anyway, thanks so much for your kind message and I hope you are enjoying yourself in your adopted country. We too are planning to move to warmer climes when the kids are older.

      Regards

      Simon

    • lily65668
      lily65668 simonft

      Posted

      Oh, I'm not in warmer climes - believe me!

      I'd be inclined to be careful with the vitamin C supplements. There's a lot of evidence out there that they actually increase atherosclerosis (hardening of the arteries). You're right to be suspicious of paracetamol - nasty, toxic stuff. Ibuprofen (Nurofen) slightly better, but still to be treated with caution. I tolerate it well myself, but only for occasional headaches.

      I think you're right about generalised inflammation - sign of immune system over-activity. I'm convinced that's my problem too. However, don't forget there's a direct link between the immune system and your psychology - i.e. the more worried about yourself you get, the worse your symptoms. I've proved that myself many times over!

      Best to take control: good diet, adequate exercise etc., but all without getting obsessive. Obsessiveness about lifestyle feeds negative vibes to the immune system. Best to enjoy life and allow yourself occasional treats (mine is champagne!) without getting tied up in knots about it.

      Good luck!

      Lily

    • simonft
      simonft lily65668

      Posted

      Thank you Lily for your very kind and wise words. I'm definitely going to take on board what you have said, especially regarding the fish oil supplements and relaxing more, and I'm going to check out what you have said about vit C supplements as I didn't know. 

      I am a fiery personality that tends to obsess about things, including my health! I also get bored with things after a while, so I tend to do things in fits and starts,  I did meditation and yoga a long time ago and must confess I've never felt better but thats perhaps because I was a lot younger too. I'm definitely going to resume it though. 

      Thanks so much!

      Simon x

    • mark09310
      mark09310 simonft

      Posted

      Hi Simon, I just came across your posts and was wondering how you are getting on. I too am a 43 yr old male and recently started with the symptoms you describe. Perhaps foolishly I am more worried about my teeth as they have become sensitive almost over night. I have the bitter taste as well as hip knee, toe and finger pain....it seems to move around my body, I wake up and one thing has resolved itself as another appears. Also feel anxious though not through worry and generally weak.I wondered if there was anything you could recommend treatment wise that I could try. I think I may make the dietary changes suggested here and cut out gluten, dairy, sugar see if things improve. This is getting me down a bit so anything you can suggest is appreciated. Thanks, Mark

  • mrspinkrat
    mrspinkrat

    Posted

    Thank you.

    I will mention it at my next visit to the GP.

    It seems that I do make saliva.... Could it still be SS?

    My mouth is wet but my tongue is dry.

    It can be helped by eating a meal but not really by drinking.

    Does that make sense?

    As I type, my tongue is dry, bitter and a bit burning/sore but the rest of my mouth is ok....?!

    • lily65668
      lily65668 mrspinkrat

      Posted

      The thing about Sjogren's is precisely that it's a syndrome - i.e. a collection of symptoms, which means that not everyone gets all the symptoms, and among the ones they do get some will be more severe than others. SS can make some unlucky people's lives a complete misery, whereas others (like me) only have short periods of severe symptoms with long remissions in between. No two cases are the same.

      I've always made a reasonable amount of saliva, though some sufferers don't. I actually get the opposite from you - my tongue is usually OK but when I get flare-ups it's the inside of my cheeks that get dry and stick to my gums and teeth, especially the area under my lower lip. Eating promotes saliva production if you're not producing enough, but drinking tends to flush away what little saliva you have. It's always best to drink small mouthfuls of liquids often.

      Good luck with your GP - most of them have never heard of SS! I suffered a ragbag of apparently unrelated symptoms for 10 years before I got diagnosed. I saw a GP, dentist, ophthalmologist, dermatologist and rheumatologist in that time, and not one of them put the pieces together. It was finally my GP who made an inspired guess and ordered a blood test for anti-salivary-gland antibodies.

    • mrspinkrat
      mrspinkrat lily65668

      Posted

      Thank you Lily....

      That's really helpful!

      Is the anti body test conclusive?

      I've read a little about a lip biopsy but that sounds dreadful!

      I'm not the kind of person to tell my GP what I suspect is wrong with me - I'll find it hard as I'll feel like I'm telling her her job!

      But I'll try and be brave as this feeling in my mouth can be all consuming sad

      Thank you again x

    • lily65668
      lily65668 mrspinkrat

      Posted

      I'm not sure whether any of the tests (including lip biopsy) are really conclusive. It's my understanding that diagnosis is usually made on the basis of a combination of the symptoms and one or two tests. There's very little in the way of specific treatment anyway. The disease can't be cured, you can only alleviate the symptoms, so it's not as if doctors have to have conclusive test results before they're allowed to give you medication.

      I'm a former nurse, but I confess I'd never even heard of Sjogren's syndrome before I was diagnosed! But then, we didn't learn much about auto-immune diseases when I trained 50 years ago and as I always worked in the inpatient sections of hospitals, I never saw any cases. SS only rarely makes people sick enough to need hospitalisation.

      I'd advise you to do some internet research on the whole subject - you'll be as wise as I am!

      And go easy on suggesting to your GP what is wrong with you. Some doctors react very badly to that sort of thing, and it could put your diagnosis back by years. A lot of them have never heard of SS anyway.

      Good luck!

  • Sweetness
    Sweetness mrspinkrat

    Posted

    The bitter taste in your mouth can be from your meds but as you said you have changed them it could mean that you have GERD reflux most SS positive persons suffer from acid reflux. It would not hurt if you check your GP for tests . The sooner the better.

      Regards

  • kathy12813
    kathy12813 mrspinkrat

    Posted

    Omg, I just stumbled on this site and read your symptoms, and they are exactly what I'm experiencing! The taste in my mouth is so bad, I just recently saw a gastroenterologist, whom only advised me to eat pineapple and take vitamin B, $200. Have you been tested for Ss? Btw, I also take thyroxine, I've taken it for years..

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