Sjogren's Syndrome
Posted , 11 users are following.
Hi,
I am new on here, so I am not sure how this goes... I just came home from my rheumatologist "he's a new doc for me" I was diagnosed approximately 3 years ago as having Sjogren's but also possible other non specified autoimmune diseases. I have all of the symptoms of Sjogren's but also Lupus (Lupus does not show in my tests) I saw a new doctor today & he tells me that he believes that I do not have Sjogren's but Sicca (I looked up Sicca & it says it's Sjogren's) it has shown off & on in my blood work that I do have Sjogren's. I am having a lot of problems, no saliva, no tears, bad skin, problems with all my organs, cataracts (had them for 4yrs, I am 48) the list goes on & on. My doctor is not taking anything seriously, but I am getting sicker & sicker. I'm not sure what to do.... anyone that could give me advice, I would gladly appreciate...
2 likes, 53 replies
brenwag68
Posted
Hi, I have one more question... sorry for being a nuisance... I also have a cardiologist (hole in the heart) and I told him of all my problems & that I had pain in all of my organs. He told me that my autoimmune diseases are zapping my organs of fluid so therefore the pain is due to the fact that the organs are becoming depleated of fluid & are slowly shutting down causing pain as when someone who is dying of dehydration... I told this to my rheumatologist & he said he has never heard of anything like that happening & that basically my cardiologist does not know anything about this field... has anyone ever heard of something like this happening? Sorry for all the questions, I promise this will be the last... thank you
margaret22116 brenwag68
Posted
Well not specifically but someone correct me if I am wrong here but my understanding is that Sjogren's in particular is related to heart problems.
And in general auto immune dieases affect the membrane around heart stomach etc.
I currently have very severe gastritis. As specialist said to me on Tuesday those of us with auto immune disease, the mucus membrane is very sensitive. And the dryness in Sjogren's does affect the internal organs. Sorry but I think your rheumy has no clue and a change of doc would be a good move. X
Tumtum1963 margaret22116
Posted
I don't think Sjogren's is particularly associated with cardiovascular diseases - certainly not more closely as Scleroderma, Lupus or RA. But all connective tissue diseases put sufferers at greater risk of organ involvement, which includes the heart. I certainly suffer from GERD and gastritis.
margaret22116 Tumtum1963
Posted
Well you've touched on something there. Don't want to hijack this post but suffering so badly from gastritis at the moment. Very painful. H pylori infection long running with pre cancerous changes in my stomach. Ouch. Any advice on relieving symptoms welcome. Really painful. Maybe it is for another post.
brenwag68 margaret22116
Posted
Funny you should mention this. I get h pylori all the time, infact I have it right now... I am so careful with this so as not to spread it to anyone... I also have Barrett's esophagus (pre cancer of the esophagus) they only thing I take for my stomach that seems to work is Omeprazole & a probiotic
Tumtum1963 margaret22116
Posted
Sounds horrible for you - you have my sympathies I know gastritis is one of my most hated symptoms. I think mine is from too many NSAIDs when I was waiting for diagnosis and treatment six years ago. Now I take Ranitidine twice daily and if I'm having a gastritis flare I add Lansoperazole. Also I keep to little and often re food and try to keep to very simple non fatty non spicy ingredients. Mine comes and goes. I think tummy problems are very common with Behcets and all forms of Vasculitis but also with Sjögren's and Scleroderma.
brenwag68 Tumtum1963
Posted
I do not eat much food anymore, most food makes me sick, especially grease, they told me that I am lactose intolerant... I have Ibs but mine is chronic constipation & it is very hard for me to urinate, it pains (no burn) I use the Omeprazole instead of the ranitidine because my gastroenterologist thinks I need a blocker... I cannot believe we all have so many similar problems, I have never went on any forum before... it makes me feel like I'm not alone anymore... if we all get this, why don't the doctors who specialize in this not!?!
margaret22116 brenwag68
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morelia100 brenwag68
Posted
Hi, I just read ask the comments and noticed that no one had mentioned a naturopath as an option. I'm not on this site as often because my own symptoms have not worsened and I feel like I have a pretty good handle in things since I've been seeing my naturopath. She was the first person to be able to provide me with long term solutions to actually healing my body, not just temporarily addressing symptoms. I have been diagnosed with Sjogrens and also had bouts of Raynauds and RA. I used to really suffer from acid reflux, joint pain, fatigue, but that has become a rare occurrence I have never used any medications, because fortunately I found out that there were natural options in addition to medications, and opted to change my lifestyle. I have discovered that traditional doctors in America do not understand autoimmune disease very well, and are not educated on how to treat it, only relieve the symptoms. I'm living in Asia right now and have been pleasantly surprised that the medical community here often makes recommendations for lifestyle changes including sleep, exercise, diet and stress and other alternative treatments. People here accept recommendations for what they should eat, or how they should sleep, etc., as well as they do the medicine. Just another option if you are interested. Regardless, I really do hope you find the answers you are looking for. Best of luck!
lily65668 morelia100
Posted
Just spotted this Morelia. I totally agree about alternative approaches.
Although my first symptoms of Sjogren's appeared around the age of 50, I'd had a mysterious attack of what seemed to be RA in my mid-30s. It came out of nowhere, when I was out walking with a friend one day in the big forest on the outskirts of this city. I suddenly got an unbearable pain in my right groin and in a very short time could hardly walk. My friend had to support me the 5 miles back to the nearest public transport route. I assumed it was some kind of injury but over the next couple of weeks it spread to both hips, my knees and big toes, and both hands and wrists. My hands were the worst, as my wrists and fingers were rapidly covered with painful nodules. I ended up having to be signed off work for two weeks because I could barely walk some days.
Doctors were stumped, but fortunately a friend put me in touch with a fantastic homeopathic rheumatologist. He diagnosed RA from blood tests - all homeopaths have to be fully qualified doctors here in Belgium - and treated me with a variety of homeopathic remedies and some excellent dietary advice. I was over the worst of it in six months and have only had occasional mild flare-ups in the last 40 years.
I think it's well worth investigating alternative therapies in the case of auto-immune disorders, and I agree about their availability varying from one country to another. I know they're quite open to these therapies in Belgium and Germany, as well as some Asian countries, but they tend to be frowned on in the UK.
I never found out what that attack was all about, btw. I hadn't had a sore throat or any other viral infection I was aware of in the run-up to the attack, and it's never returned in severe form since then. However, that might be down to the fact of observing the homeopath's very simple dietary rules and putting myself back on his recommended homeopathic remedies at the first sign of trouble. I've always wondered whether there was any connection with the appearance of SS 15 years later.
brenwag68 morelia100
Posted
Hi.... I will have to look into naturopath, I too had reflux, raynauds & neuropathy. I was diagnosed with Barrett's esophagus (pre cancer of the esophagus) I try not to take many proscribed Meds, instead I use a lot of vitamins & herbs... thank you
Cowgirl918 brenwag68
Posted
I hEssential Oils for humidifier and massage and I am always on my heating pad if I am awake. Simple walking keeps my joints and fluids moving and I too use a cane now. I try to stay away from meds but know the time is coming. My eyes are the daily "pain" but the Restasis and eye gel helps. Stress equals falre up but that has been hard to avoid. Eating well is a "no-brainer" but I still allow myself some goodies now and then. Nexium and small meals really help with the reflux. Hang in there.
Cowgirl918
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cath23317 brenwag68
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Hi I have Lupus and sjogrens and Rhumatoid and Osteo and several other illnesses, My own imune system atacked my liver, so now I have cerroses of the Liver as well Try getting P.I.P for this, they don't want to know I'm from Swansea, speak soon
brenwag68 cath23317
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Sorry to hear that... I heard that these diseases effect the organs, but my rheumatologist doesn't agree...
aitarg35939 brenwag68
Posted
Rheumatologists here in the States vary from year to year. The quack I've got now, Monty tew, said years ago that Sjogren's killed my gallbladder. I think that's correct. Now though he says that Johns Hopkins & the Sjogren's Foundation are all wrong, Sjogren's doesn't affect anything but eyes & mouth. Total jerk
brenwag68 aitarg35939
Posted
I believe that Sjogren's causes so many problems, I never knew how much it does effect you until I came on here & heard all the problems people have like mine... I also had my gallbladder removed... too many stupid uncaring doctors...
tj268 aitarg35939
Posted