Newbie, scared and lots of questions - please help

Thank you for your quick and positive reply. I have been prescribed spray and tablets for my dry mouth and eye drops but their effects are very short-lived. I am desperate to find something to halt the mouth sores. Is there anything that SS sufferers with this problem use to keep them at bay or speed up their recovery. There are some preparations that burn them which are very painful but then apparently the sore goes quickly. I am not sure it would be good to use this kind of product on an irritated membrane such as mine but there doesn't seem to be anything else.  It is so frustrating because I am being so careful with hygeine and hydration etc but it's as if my teeth rub on my tongue and inner lip when I speak and I can feel the same parts getting sore again and again. I have just come out of 5 hrs of class and I want to cry. I kept trying to minimise my talking time but it's just not possible to do my job and not talk.

I know you are right that the patients who are doing well are generally not the ones on the forum.

Oh, I really sympathise. I can remember what it felt like when my bottom lip kept sticking to my teeth. I can't recommend anything myself, as the acute phase of dry mouth only lasted a few months for me, and that was back in 1995. However, I know there are lots of people on this forum who have really bad problems with dry mouth, and I'm sure they'll chip in with good advice over the next few days. Have you tried reading through the list of threads in the Sjogren's group? I'm sure a lot of them are specifically discussing dry mouth.

I do know that some sufferers find it helps to chew sugar-free gum to promote the flow of saliva, though I realise that wouldn't be possible for you when actually teaching. Obviously you can't tell the kids to spit out their gum if you're chewing it yourself!

Have you tried asking your dentist to recommend something? They're supposed to be experts on all mouth matters, not just teeth, but I know some are more knowledgeable than others.

I know it's a worry, particularly when it affects your career, but try not to get too down about it. Negative feelings can have a direct impact on the immune system, weakening it in most people but, paradoxically, exciting it even more when it's already hyper-active. Statistically there's every chance you'll be one of the people who have long remissions.

Just hearing you say that the acute phase of dry mouth only lasted around a month is reassuring me already. I've had it on and off, mostly on for 4 months now but nothing as bad as this last fortnight and the severity of the eye dryness is much worse now too although I have had dry eyes in general for ages. Thank you for your kind words

More than a month - as far as I can remember at this distance it was more like three, maximum six, but it certainly wasn't very long, and it wasn't constant. It came and went during that period, like yours has. That's not to say I don't still suffer from dry mouth (and eyes), but it's not a major problem these days. I'm heartened to hear that it's been happening to you on and off, and hasn't always been as bad as it is right now. This suggests to me that this is just a flare-up and it will go back to more manageable proportions very soon. Though I'm afraid there's no guarantee it won't be replaced by another Sjogren's symptom, as happened to me. That's just the nature of the beast...

Hi

This was a fantastic reply.

I have SS & have been geting neuropathy. Does it come & go is it anything to worry about. Ive been taking pregabalin for a couple of months. It helps me sleep. But nit sure if the neuropathy is going

Thank you

X

Oh dear, I'm so sorry to hear your neuropathy is stopping you from sleeping. Is this because you're experiencing actual pain? I'm guessing yes, because Pregabalin is prescribed specifically for nerve pain. A lot of SS sufferers get peripheral neuropathy - I did for years - but in our case it more often takes the form of altered sensation (tingling, electric shocks, numbness) rather than actual pain.

The endless tingling and electric shocks in my hands and feet finally cleared up spontaneously. To my and my GP's absolute amazement, the sensation even returned quite suddenly in one of my big toes, that had been numb for 10 years! This is very much a feature of SS. We often get long remissions, where our symptoms disappear almost immediately.

Symptoms also move around the body, and from one system to another too - very much the case for me. That's why I'm slightly concerned about your taking Pregabalin (unless the pain is unbearable, of course). As I'm sure you know, dry mouth is one of the side-effects, and that's also one of the main symptoms of SS.

Finally, we can sometimes manage our own symptoms by thinking about causes and how to avoid them. About six months ago, I started having what was clearly nerve pain all down my left arm. Added to the existing pain of tendinitis in both arms, this used to keep me awake at night too. I also periodically lost power in that arm, often at unexpected moments. It came to a head one night, while putting plates away in a shoulder-high cupboard. I suddenly lost power and dropped the lot, smashing all seven of them on the kitchen floor. It was 10.30 at night and I live in an apartment, so goodness knows what the neighbours thought was going on!

That got me started on looking at what I might have been doing to cause the nerve damage. In my case it was easy once I thought about it. Throughout last summer, I'd been obliged by circumstances to walk 4 miles several days a week. Because most of my journey was through slightly dodgy parts of town, I'd been wearing my bag - containing a bottle of water, which made it heavier - diagonally across my body to stop it being snatched. I'd been wearing light summer clothes, which didn't offer any protection, and had been aware of the strap cutting into the base of my neck on the left side, but hadn't taken any notice of this. I switched to a little back-pack, which I've used ever since and guess what...? The pain disappeared after a few weeks, along with the sudden losses of power, and hasn't been back since.

I know it's not always as easy as that, but sometimes a little thought about lifestyle issues can produce very good results without resorting to medication.

Hi

Yes was Put on pregabalin for the pain.

Sounds like you have been thru it.

Oh you no what i have this horrible pain on my big right toe it feels so bruised. Reading your reply maybe this coukd be the neuropathy? Wen i say to the rheumatologist my big toe really hurts he just looked at ne like i was crazy...lol

Rheumy prescribed hydroxychloroquine it gave me a shooting pain in my thigh it was horrendous. So I stopped taking it. Waiting for a follow up appt.

I want to try get thru all this without the horrible medication

So the neuropathy will come & go?

Well, with a bit of luck it will go as well as come, but we're all different so it's impossible to establish rules. My basic neuropathy - the tingling etc. - lasted about 10 years, but it came and went and moved around even in that time. Only my right big toe was a persistent problem throughout the 10 years. I had to be very careful looking after the skin and nail in the last couple of years of that time, when it was completely numb, to avoid infection - a bit like a diabetic. The nerve pain in my left arm only lasted a couple of months, until I figured out what I was doing to cause it and stopped doing it. I never figured out what was causing the toe problem - it just upped and left one day!

If your big toe feels as if it's bruised that's more likely to be rheumatoid arthritis or gout, both of which are part of SS, of course. I used to get a lot of pain in both big toe joints in my first RA flare-up 35 years ago. I'm surprised your rheumatologist doesn't take you more seriously.

I don't think you'll regret stopping the hydroxychloroquine (Plaquenil). A few people on this forum swear by it, but most of the reports seem to be negative. And have you read the list of possible side-effects? As mentioned above, I've been lucky enough to be able to manage my symptoms for more than 20 years now without taking any prescription meds except thyroxine for an under-active thyroid.

Hi

Thank you so much, youve been a great help.

Ok so i should try look at the neuropathy like pmt it will come & go. Lol.

Yeah im really not sure bout the hydroxychloroquine. I didnt have thigh pain before & now i have!

Yeah my big toe feels like its bruised. I will ask rheumy bout it wen i go again.

Thanks again

X

Try using coconut oil for the sores in your mouth. It's all natural, so there are no side effects. Just rub a little on each sore. I found it soothing when I was dealing with cankers.

Thanks for the tip. How does it help? I feel like there must be something out there that can make them heal quicker or not get so painful. You say 'When I was dealing with them" so how did they clear up? 

I changed my diet to mostly paleo and avoided all the foods that trigger sensitivities in my body (i had a blood test for this). I also ate things that helped with my digestion, like pickled foods. It's not so easy to say exactly, but I do know that I used to be plagued with cankers and now I can't remember the last time I've had one. Even if I accidentally bite my lip, it doesn't turn into a cold sore any more. I wish I had an easy answer for you. I looked up on the internet every possible natural solution and did as much as I could. I think it is a combination of things. For immediate results though, I would say avoiding sugar, salt, acidic foods, completely until your sores are healed might help. Coconut oil to sooth them.

One more thing, I was getting sores on the inside of my cheeks, and finally discovered that my toothpaste was causing a reaction in my mouth--even though I had used the same toothpaste for years. I now use a very natural toothpaste made in France, and I feel so much better. No irritation at all.

My dentist said avoid toothpaste with sodium laurel sulphate in it as a lot of people react to it.

I would also avoid any toothpaste with triclosan. Toothpaste, as well as soaps and antibacterial lotions might have this ingredient. Look for alcohol-based antibacterial lotions, they are much safer. Triclosan is known for being a thyroid disrupter.