been diagnosed with SS for 21 years anyone else like that?..
Posted , 10 users are following.
I have been diagnosed with SS for 21 years since I was 31 I do
believe I have had SS since I was 18 ,,,, I am now 52 ,, I would like
to give some advice and what I have done to help myself
This is my story
I began to notice the glands in my neck swelling up and they
Were painful to touch,, and I started to loose my saliva in my
mouth to the point where I had none,,, I drank so much water I
thought I was going to drown my kidneys
Finally after going to the doctor I had an appointment with the
specialist, ! He diagnosed me with SS ,,, by this time I had just had my third child,,, I was very I'll, I lost 5 stone in weight and had no saliva and I mean none,,,we did not have a computer back then and I knew nothing about SS the doctor offered me anti
depressants as I became depressed I stated to him that one of
the sidel effects was a dry mouth no thanks to that Also I started
to have to have absolutely awful migraine headaches and I still
have them now
It took about 3 years that I started to improve again and with a
small child that was extremely difficult
I just got on with life as I am not one to worry as I believe SS was out of my control ..The years went by and I would have very bad
bouts of fatigue but I went on to get a degree and traveled a lot of the world about 2008 I had to have a break from work for six
weeks I was very sick they could find nothing wrong with me I
had lots of tests done and nothing My symptoms now had
changed
I had inner shaking of my body ,,,,!my musclesson felt like they
Were
burning ,, I could smell vomit all the time and would vomit,,,And
my nerves in my legs began to move and in time this would
spread to my entire body,! I would have muscle aches and joint
pain far worse than what I had previously experienced Also my
hair started to fall out so I take a herbal pill for this,,
And I have terrible dry skin , I put lots of baby oil on every night in my bath. I also have bad inflammation in my body and sits in the wall of my chest and gives me pain
I also began to experience cramps all over my body ,,,hands, back,,, to neck and stomach ,,In the finish I had to give up work in 2012 but the fatigue was very bad
About a year ago I was admitted to hospital I had phumonia and was very ill I went to intensive care and was in life support for 11
days this was complicated by SS I was lucky to be here today
Was has helped me through the years with SS take each day as it comes,,,, diet no sugar,,, no gluten ,, eat lots of ,vegetables, ,fruit
nuts seeds and a small amount of meat,,, I do not eat diary either
Diet is extremely important with SS
Usually if people have a flare it is what they have eaten And the most important for me I do not take any medication at all but for
oNE Sleeping pill ,,,!I take natural things for my joints But will rub a voltaren gel into my muscles I still walk walk everyday I believe over time taking medications makes SS worse over the long run
I was wondering how many other people have had SS for a long
time?. Today I do not work but am very lucky to have a wonderful
Husband, I have 3 cildren and 8 grand children that keep me busy
3 likes, 37 replies
mandy95 christine_73623
Posted
I was told when I was 29 that I could have Sjorgrens. My eye test showed moisture levels of 1 and 2. The only issues That I noticed until I was 55, was problems with my eyes, I then had the Punctal Plugs inserted into my tear ducts.
Then at 55 it seems that all hell broke loose. Dry mouth, dry eyes, joint problems and problems with the Chest. I was finally diagnosed Sept 2014. After 6 hospital cancellations I finally got to see the RA Dr at Addenbrookes Hospital. I was put on hydroxychloroquine 400mg daily, but just recently I noticed that I was getting a lot of muscle pain in my legs and back of my neck. I stopped taking the medication and now I no longer have muscle pain, but now my crackling voice has come back. So what do you do. I have just started taking Sea Buckthorn Oil to see if this could help, but read on the internet that this should be taken for 3 months only? But the bottle from HB does not say any time limits, so it's all a bit confusing. I want to stay off the hydroxychloroquine but don,t know what damage I am doing to my body by taking nothing.
regards,
Mandy
pam_87693 mandy95
Posted
mandy95 pam_87693
Posted
The hydroxychloroquine that I was taking was actually Plaquinel and this caused problems with my muscles. I also tried the Pilocarpine and this caused problems in my right armpit. So I have now decided that medication is not for me.
Regards,
Mandy
lily65668 mandy95
Posted
First of all, to explain that three-month time limit you've seen on the web. It's normal that this will appear on authorised medical sites, which have a legal "duty of care", as testing of supplements (as opposed to medications) is normally done for 90 days. This means nobody can absolutely guarantee that it's safe for longer periods, and they need to protect themselves against someone claiming serious side-effects after taking it for a longer period. However, this doesn't mean it's necessarily unsafe to continue taking it for life. In fact, the reason why 90 days is chosen for products of this type is that if it hasn't done any harm by then, it's highly unlikely to.
Since starting it, my eyes have improved a lot and there have been small but noticeable improvements in the arthritis, especially my left thumb joint, which has come in very useful in the kitchen. I can now open screw-tops again just with my grippy cloth without having to resort to the nutcrackers, the cracks of doors etc.! That being said, this wasn't a scientific trial as I've been taking homeopathic remedies at the same time, and these usually calm my RA attacks if I take them for long enough.
Unless I suddenly get any unpleasant side-effects, I plan to keep taking it for at least six months. However, I do have one reservation about this stuff. Well, two, actually. One is that it contains omega 6, which is a trans-fat, albeit a naturally occurring one, which can be bad news. My main concern is that omega 7 (the main active ingredient) doesn't figure very largely in our diets in Europe. The only other rich source is macadamia nuts and they're not a part of daily diet for most of us. It occurs in fatty foods like dairy, but only in minute quantities.
So... that's got me wondering whether we have the metabolic set-up to cope with this stuff long-term, since we've never eaten it in large quantities (at least not in the last few millenia). Do you see what I mean?
I suspect the liver is the most likely place where early signs of trouble might show up. Fortunately, I have an incredibly understanding and open-minded GP, so I was able to ask him about this. He agrees totally. Since my thyroid values are going haywire at the moment and he keeps having to adjust my dose of thyroxine, which requires six-monthly blood tests, he's quite happy to add liver enzymes to the list.
In this context, my doctor, who to all intents and purposes is a conventional mainstream GP, really surprised me in the course of this conversation last week. He suddenly started holding forth on the "leaky gut" theory. Now, I'm a former nurse and though I'm very open to alternative ideas, I confess that whenever I hear about leaky gut, something in my mind says: "Yeah, right..." But he's really sold on the idea, and was pushing for me to try the latest complete pre- and probiotic supplement, which has recently crossed the Atlantic, and is available OTC. I realised after a while that he wanted to use me as a guinea-pig, as he knows I obey the rules when taking anything new and keep accurate observations. He roared with laughter and confessed when I accused him of this! Anyway, the upshot was that I ordered a 30-day supply of the stuff when I picked up my prescription and have now been taking it for three days. Far too early to comment on that, though.
jefferson89822 lily65668
Posted
jean34329 lily65668
Posted
I read this with great interest. Is it possible for you to PM me the details of the homeopathic medicine you took?
lily65668 jean34329
Posted
christine_73623 mandy95
Posted
for my hair, joint pain, I do have a Voltaren rub gel I put on my
muscles everyday, I take apple cider vinegar 3x per day a
table spoon at a time I drink a lot of home made fruit juices an put energy powders in that,,,that are gluton free, my diet is extremely important , staying active,, talying to people in health
food shops, about herbal things to take,, not buying them from
the supermarket ,as they are not as potent from a health Food shop,, Massage is important as well and even acupuncture can help I personally would always look at alternative first for me
but also what has helped me the most I have a very high
threshold of pain
Sue1247 christine_73623
Posted
jean34329 Sue1247
Posted
jean34329 Sue1247
Posted
If so there is a class action going on in the US. Floxiehope.
christine_73623 Sue1247
Posted
believe it is wasted time , but like to tell a bit of my story if it
helps some
one else, I do not think about the future and what it will bring
with SS I just never do ,,,,as that is wasted time and energy
I always live in the here and now, I have learnt that when I used to work stay well Sue
pamela87113 christine_73623
Posted
lily65668 pamela87113
Posted
jean34329 pamela87113
Posted
That is very interesting . Which anti hypertension medication did you take?
I agree about the anibiotics as wel and I am convinced that this is what happened to me. Any further info on the names of the drugs involved would be gratefully received. Jean x
pamela87113 jean34329
Posted
jean34329 pamela87113
Posted
I was and still am on an ACE inhbitor Valsartan which also gives rise to peripheral neuropathy.I was also on Amoxycillin as a prophylactic measure and as a cover for dental work.
Perhaps we should compile a register of these drugs known to cause auto immune conditions etc. Another one that suppresses the Immune system is Perampanel, an anti epileptic drug.