I was going to ask if this is normal but it has become my normal so instead I'll just ask what I can do to improve it. I drink a lot of water, don't have a particularly dry mouth, think it is more likely coming from above ie nasal passage/ simus's, than below but it is the bane of my life along with burning lips and gums and fatigue. I wonder if I'm just more sensitive to innate tastes that most others take for granted? I do have neuro features to my autoimmunity so could be faulty wiring in the brain.
I find I eat more just to try and get some temporary relief. So my weight has gained a lot despite eating a very healthy diet of mostly non refined food and exercising as much as possible. Dentists haven't been able to find anything wrong and my heartburn comes and goes whereas this blinkin' awful taste is a constant. I do have thrush below which is plaguing me, but no oral thrush, and a strange type of constipation that is relatively recent. But I don't think this explains the bad or salty taste ( I get both) which has gone on for much longer than these other problems. Any one else have this problem?
Yes ...to be short! When I was first diagnosed with Ssc. I went the opposite way vis a vis food....I stopped eating so much. Even my favourite drink of Irn bru was a no-no as it had such a horrible taste to me. I went from a size 16 to a 12 and cost me loads for new clothes...but gradually my taste improved and now have gone up to size 14 and holding steady weight wise. But, I still have, what we call in Scotland, a 'scunner' for some things and my appetite is a bit wonky at times....I can only eat half of what I used to because of reflux and some things still have lost their nice taste ...I eat curry's and chilli's and they are fine to mask the taste of meat which I am a bit reluctant to eat now.
So, fingers crossed your taste will improve over time. Good luck and better health! Marilyn.
Thanks Marilyn - I'm in Scotland too and "scunnered" is a favourite word for me too - although not so great for the predictive texting!
I wish, wish, wish my rank taste would lead me away from eating too much as yours did! I have a terribly slow metabolism and am really overweight for my short, petite frame. But I suffer disequillibrium/ dizziness/ tinnitus- which has put me off exercising as much as I used to. I walk the dogs as much as I can using my pedometer - but not enough to the lose weight gained from 6 months on steroids last year. I love spicy foods but they play havoc with my burning mouth! I do get terrible indigestion but mainly from dry or processed foods not so much from spice.
Are you finding you get good treatment for your SSc in your part of Scotland? I'm in the Dundee area and believe this is the second largest Sclero specialist centre in the UK? But I'm not yet rediagnosed from previous diagnosis of RA.
I can't walk very much at all Twitchytoes...I have severe osteoarthritis in both knees and found out that I had broken three vertebrae in my spine and there was a bulging nerve bundle at the base of spine which explained why my left leg and both feet were numb...got tested for nerve damage at the new Queen Margaret's hospital in Glasgow this year and it was found to be definitely nerve damage that was causing it. So, the furthest I can manage to 'hobble' is from the couch to the chair opposite and then holding onto walls and furniture until I reach the seat in the kitchen to do anything needing doing...peeling veg etc. I am 5.' 9'' and was always a steady 9st. 5lbs until my weight crept up with the lack of exercise and the steroids I had to take....was taken off them last year as they were in danger of damaging my internal organs more than the scleroderma was....mine is the diffuse kind and has damaged my lungs...and breathing can be difficult after any exertion ...takes me about half an hour to make the bed then I have to rest for the same amount of time after it to recover! ...even trying to cross the room is murder for me.
Anyhoo.....I have Dr. Tan's clinic this coming week....pulmonary breathing test....have to go regularly to keep an eye on lungs. Then next month back to Dr. Anna at Wishaw gen. for rheumatology dept. to see how I am doing on the tablets I have to take to stop getting worse....Mycophenolate Mofetil ...have to take two 500gms in morning and two in evening. I find Dr. Anna very sympathetic to my problems and does her best to help me get through this. No complaint on treatment.
I too have slow metabolism and terrible reflux and indigestion....I bend over and bring sick up into mouth...YUK...I have Omeprazole for this but they don't really help much....and the Mucodyne for the horrible mucus in my chest and choking in the throat...lungs again...so rattle when I move.:)...goodness! am falling to bits I think :).
Thing is.......you just got to get on with things...have you tried a good mouthwash to help with the taste? I use Corsdyl and the tongue and lips burning I can relate to...I use Bio oil on my lips as they were starting to tighten up and getting my mouth smaller so this oil seems to help quite a bit. On the indigestion thing..I don't think it really matters what you eat you are going to get this through the Sclero. as it is one of the side effects of it...so no escape! I think that the weight gain on the steroids is awful and inescapable unless on a very strict diet and even then ......no escape! Depression isn't much help either as you end up on the 'hey, let's eat what we want that will make us feel better' brain messages that are insidious and unrelenting! Mine was chocolate peanuts and bounty bars and mars bars etc..........I am trying not to be tempted now and the thought of how much it will cost to buy more new clothes in a different sizing is what is putting my off eating those naughty chocolates!
Anyway, just wanted to let you know that there are more of us out there and know what you are going through! Keep your chin up and hope your taste buds get back to what they should be eventually! Marilyn x
Your arthritis sounds awful Marilyn - I'm really sorry. I'm lucky that, despite a diagnosis of RA in 2011, my arthritis has been manageable so far. I do have wear and tear in my lumbar region, hips , neck, hands and knees but it is relatively mild and doesn't immobilise me too much apart from when I wake. Apart from this it's the nerve pain that causes me grief - especially now in the night. And I wonder if this isn't what has skewed my taste buds too ie autonomic sensory neuropathy rather than anything mechanical. I see the oral consultant on the 19th August for the results of my lip biopsy so I will ask and return to let you know what she says. She's great!
I can relate to most of that. I have an intermittent salty taste, more so salty lips. Have had Lichen Planus and Burning mouth syndrome for 14 years. Lost my teeth to Sjogrens dry mouth and suffer awful pain from dentures. Had oral thrush mildly a couple of times. No bad taste though. My eating is quite restricted by the sore mouth. All this came about the same time as major depression--the chicken or the egg? Took years for the fog to lift and I am always terrified it may return--yet again. Also had over active thyroid killed by iodine pill and now take meds for under active. My Dr said years ago "it won't kill you but it will make your life very uncomfortable." So true. Good luck with some diagnosis and help. where do you live? I am in NSW Australia.
Small world I'm in the Angus area and go to Ninewells for lSSc. I get intermittent salty taste and fizzy drink sometimes give me an electric shock sensation in my salivary glands. Sauntered by food too so not caring about cooking which I used to love and going for easy options. Added to joint pain and fatigue I'm not going to win Slimmer of the Year anytime soon. Suffer from occasional dry eyes and nasal passages. Strangely I too have dizzy, deaf/ tinnitus attacks. Had driving license revoked for a year because of it and am getting treated for Meniere's.
Thanks so much for helping me know what symptoms are more likely to be related to my connective tissue disease than just one things everyone gets but that I'm just particularly sensitive to!
My thought is that I might have had diffuse Scleroderma rather than RA. But because it all kicked off quite nastily 5 years ago, I was put straight onto Methotrexate and Hydroxichloraquine and courses of steroids, in keeping with early RA treatment protocol.
So I now wonder if it actually knocked Sclero on the head instead - because RA should have come roaring back now. I've been off he drugs for over a year (apart from steroids). I did read that sometimes scleroderma can be stopped with aggressive treatment. I don't think my symptoms have stopped and my inflammation levels are still pretty high. But I think instead I might have come through the worst of it unscathed so far because of being aggressively treated for RA. Does this make any sense as a theory I wonder or is my pseudo science a bit out there and overly speculative perhaps?
Can anyone tell me which drug treatments are left for me to try if the rheumy decides I do need them in order to prevent organ damage? I've tried Sulfasalazine, Methotrexate, Hydroxichloraquine and Azathioprine. The only one that didn't hospitalise me was methotrexate!
Hi again.......I was put onto chemotherapy treatment at the beginning of this year so was pretty aggressive treatment to try to halt further damage to my lungs and was told that it has definitely helped and damage has not progressed but damage already done cannot be reversed so have to live with being very breathless and choking on thick mucus being produced because of this damage. Hope this answers question for you Twitchytoes. x
Someone sent me this link re Scleroderma and the Ninewells. If I do finally get rediagnosed after five very roller coaster years, then it seems like I've found the best place to live in Scotland for other reasons than anticipated!
Have had bouts of dizziness too Anjig. strangely enough.....no tinnitus though...just waves of dizzy...room spinning and my eyes trying to focus so end up shutting them and lying down hoping it will pass...then bouts of throwing up...this has happened a few times now so must assume that it is part of the Ssc thing. Big boo on that one! My hands are swollen and sore most of the time too...joint pain is another thing I have too. Find saliva pours out of side of my mouth a lot although not got sensation of producing it too much...very strange!
I would go with your gut feeling - these are usually the most reliable. Why would SSc not cause Menieres or vestibular problems since it can make the inner ear tissues harden up? I am told by my neurologist that my form of dizziness is called disequilibrium and is due to the loss of small nerve fibre sensation in my feet and face - which sends confusing propriception issues to the brain. It only affects me when I'm up and about - if I look up or to the side or am in artificially lit spaces or if the flooring is uneven or strongly patterned. I'm told mine isn't vestibular in origin and this makes some sense to me.
I also have tinnitus but not dizzy.Also not interested in food. I eat because I have to--it is good for the weight. I also have not had a really conclusive diagnosis. I too have lung problems, nearly died from pneumonia last year. .Not much fun is it.
The chemo I received was cyclophosphamide infusions given at Wishaw hospital...am on mycophenalate 500g tabs...two in the morning and two in the evening.
Also have had pneumonia twice this year and once last year....it was going into hospital with the pneumonia on the third occasion at the beginning of this year they sent the Rheumatology doctor into see me and she diagnosed systemic sclerosis but said to wait until it was confirmed with various tests- x-rays, ct scans and mri ....exhausting at the time. Then was sent to Dr. Tan's clinic after diagnosis was made to see extent of lung damage.
It just seems to go on forever! I do not feel any better, to be honest, in fact most days I feel as if I am getting worse. I try to stay positive but at times it can be difficult...I have two cocker spaniels, 13 years old both of them, and they are both sick too! One recently diagnosed with diabetes and the other has Cushings. Should have big red cross on door! Also have a disabled husband with diabetes and mobility problems to look after too! Never rains but it pours! Ach well, you are never given more than you can handle in life so....just get on with it I suppose! Have to go and try to catch Barney, the cocker with diabetes, for his injection- he is a wee menace for getting his jag and when he sees me with the syringe he runs...he knows I can't chase after him so I have to wait until he settles down onto the couch before I can sneak up on him ! Not funny! for both of us! :)....anyway, hope you all keep better so bye for now...lovely to hear from all of you! I am in S. Lanarkshire by the way! x
Oh no - poor you all. You do indeed need a cross on the door signalling for nice people in S Lanarkshire to help out where possible including injecting your dog. I'm very lucky in comparison. Our dogs are both on my bed sleeping as I settle for a nap now after only two hours sleep last night. Bliss! X
I tend to have a bad taste in my mouth particularly after doing any exercise, even walking. I have been diagnosed with secondary sjorgren's syndrome and autoimmune condition which attacks the secretion glands, it is linked with scleroderma. Have a word with your rheumatologist. Mine asked me the right questions did I have itchy or sore eyes and did I have a dry mouth. Although my mouth is not always dry I do produce saliva I find that at night my tongue tends to glue itself to the roof of my mouth. I have been prescribed a mouth spray which I use at night and sugar free pastilles that I let dissolve in my mouth. It seems to help.
Thanks PaleIndian2. I've just had a lip biopsy to check for primary Sjogrens. I already knew I had it as a secondary to RA/ autoimmunity but it is more serious/ severe if you have it as a primary disease. Or maybe Sclero and Sjogrens are overlapping equally for me.
Hello, I just stumbled across this post so I apologise for butting in !
I have Raynaud's and quite a few other disorders ( my primary issue being RSD/CRPS, but I also have chronic migraine/fibromyalgia etc etc ).
For years now, I have had the most awful taste of salt in my mouth and no-one knows why ! It is terrible....I also have a burning mouth/itchy and swelling of the lips ( but I have numerous food allergies and we think I have lots more now because I can't keep anything in me these days, all food is making me poorly..even potatoes ! ) and my face gets strange rashes and really hot and burning all the time.
I am used to my nose and ears getting the burning/freezing as that seems to be my Raynaud's, but this salty taste and the mouth/lips is awful. I also have constant nausea ( diagnosed by the Neuro as part of my chronic migraine ? ) but it's so bad I am never free of it. I am lucky that I am rarely sick, but I feel as though I will be all the time, sometimes I hardly dare move for fear I really will be. It's awful.
I also have balance/vision issues and tinnitus.
And lots of gastric problems...as I say, so much going on that I don't wish to bore you !
But multiple blood tests haven't shown signs of any autoimmune problems....would I need something special for this sort of thing ? Or am I clutching at straws here ? It was just seeing others suffering from this that made me think I wasn't mad after all.
Thanks for reading this anyway and sorry to interrupt ! I hope you don't mind.
Please don't apologise. It's bad enough having multiple problems with a recognised multisystem disease but even harder without a proper diagnosis. All I can tell you is that I have had a long, long journey to be finally diagnosed. Sjogren's is a multisystem autoimmune disease I've known for years that I have it.
However it took my bloods, a lip biopsy and a very experienced rheumatologist to finally diagnose it properly ten days ago. The rheumatologist told me that some of my symptoms and signs abs lip biopsy result point to my also having possible non Hodgkins Lynphoma so I'm having a CT with contrast tomorrow - to include everything from thorax down to groin - where he found a swollen lymph node. He's also ordered an MRI of my brain because Sjogren's cab sometimes present similarly to MS as mine does.
I am getting breathlessness and wheezy voice now and think the salty taste is either a steady drip coming down from my nasal passage (unlikely because I'm dry as a bone!) or silent reflux - which I know I have.
Fortunately I never had diagnoses of anything other than autoimmunity previously so nothing else that doctors can blame apart from stress and bad luck! I do have antibodies for Scleroderma but not the classic symptoms yet apart from Raynaud's - which could also be Sjogren's related. I'm also diagnosed and treated for Hashimoto's hypothyroidism - another very common autoimmune disease.
My advice to you would be to keep searching, asking questions and pushing hard for answers. You know something is wrong even if it's not autoimmune or auto inflammatory. Sometimes it takes a lot of perseverence and research, where others seem to land a diagnosis instantly (as I did with RA) and struggle to accept it because it feels all wrong. Others just take it and allow it to define them and will become fierce advocates for strict criteria so that it remains exclusive. Now I've complied with strict criteria myself I just know that this is very lucky for me but I'll always remember being lost in the shadowlands so hang on in there.
Some people just take a long time for the problem to really show its true colours. I think you should keep searching but try to keep your mind open to the possibility that not enough is yet known by the medical profession for everyone to achieve clarity from a diagnosis.
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I think that the weight gain on the steroids is awful and inescapable unless on a very strict diet and even then ......no escape! Depression isn't much help either as you end up on the 'hey, let's eat what we want that will make us feel better' brain messages that are insidious and unrelenting! Mine was chocolate peanuts and bounty bars and mars bars etc..........I am trying not to be tempted now and the thought of how much it will cost to buy more new clothes in a different sizing is what is putting my off eating those naughty chocolates! 
Ach well, you are never given more than you can handle in life so....just get on with it I suppose! Have to go and try to catch Barney, the cocker with diabetes, for his injection- he is a wee menace for getting his jag and when he sees me with the syringe he runs...he knows I can't chase after him so I have to wait until he settles down onto the couch before I can sneak up on him ! Not funny! for both of us! :)....anyway, hope you all keep better so bye for now...lovely to hear from all of you! I am in S. Lanarkshire by the way! x
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