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Possible Sjorgens????

Posted , 8 users are following.

shirley43769
shirley43769

Hi all I am new here and just looking for someone that is maybe in the same boat. I will start at the start! I went for a routine eye test in September 2016 and while waiting for my fairly weak prescription glasses to come home I noticed my eyes were twitching a bit and wanting to close, I put this down to having'rugby ball' shaped lenses and have always scrunched my eyes up a bit to read etc. Anyway this got worse as time went on and went back to the optician and got drops for dry eyes. This became an almost weekly occurrence and it was discovered after a few different lots of drops I am allergic to preservatives in the drops and got preservative free ones ever since. After a few trips to the optician I thought maybe the doctor would be able to offer some other help or advice. After a string of doctors giving me the helpful advice of 'stop touching your eyes, you are doing it to yourself', here's some antihistamines and try these drops the optician finally referred me to an eye specialist. I was given an urgent referral, but because of living in the Scottish islands, it was two months before I was seen to be told 'theres nothing wrong with your eyes, don't worry about it it will get better' and he gave me yet more drops. At this point I was having to hold my eyes open with my hands and had been signed off work for two months. I have had two lots of blood tests that have come back negative for thyroid disease and any auto immune problems. I have been referred to a rheumatologist but again because of where I live I will have wait at least another two months before I get seen. For a while I was just thinking it was a dry eyes thing but when I wrote a list of every tiny niggle i wasn't so sure! Some of the things I have are

Restless legs and arms

Feeling sick after eating

Numbness in some fingers

Dry ears, mouth and throat and of course eyes

A choking sensation to name a few.

I know I am fairly early in the symptoms at 9 months compared to some of your experiences but I am past my wit's end already 😑 I think the waiting without actually getting any better is the worst! Thanks for reading 😃

2 likes, 58 replies

58 Replies

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  • shaq26875
    shaq26875 shirley43769

    Posted

    Has anyone heard of Botox injections in the head to stop migraines. My son in law had debilating headaches last year....missed work for a month...given ultrasound of head, MRI ....only thing they found were lesions in thew white matter in brain and all the speciliasts  confirmed that these lesions do not cuase the headaches he was sufferning from. They said he was probably born with these and the headaches were just coincidence .He was presrbed strong opiates which didnt work. Eventually headaches subsided but reccur frequesntly (though not as bad the ones i mentioned here) A plastic surgeon  said Botox injections in the head work. !!

    Has anyone here heard of that?

    ​I have SS which i thought was pretty mild for me but these last 6 months i have debilitating pains in neck, shoulders, elbows,...now hands and latest is a foot ...painful walking ...wake up in a lot of pain thorughout night and morning...progressivly symptons getting worse. sad

    ​waiting to see rhuematologist ...but i know he will prescibe predisolone and plaquenil (was on both of those b4).. I already have osteoporosis and secondary cataracts in both eyes.

    • shirley43769
      shirley43769 shaq26875

      Posted

      Hi Shaq

      Yes I have heard of botox injections to help with migraines, I don't know of anyone who has had it done or how readily available it is? I'm in Scotland so maybe different in other places. I hope you see a rheumatologist soon and get a bit of relief and that your son in law finds something to work 😃

    • shaq26875
      shaq26875 shirley43769

      Posted

      Hi Shirley

      ​I am an expat in the Middle East so all health treatments have to be privately funded. so yes it is possible to get it here on appointment with a plastic surgeon. I think my son in law is desperate to try anything at this stage. 

    • shirley43769
      shirley43769 shaq26875

      Posted

      Hi Shaq

      It's horrible to be so desperate for help. I read as much as I could find before I got piercings done and even though there's no medical evidence that it works, the majority of people I know it has worked for. They are quite discreet and often not noticed. Hope he finds something that works for him.

    • jane75220
      jane75220 shaq26875

      Posted

      Hi Shaq

      ​I have heard of biotox injections for migraines but as far as I know this is done by a neurologist.

    • shaq26875
      shaq26875 jane75220

      Posted

      Thanks for that info Jane ,i will pass on that msg to son in law
    • shaq26875
      shaq26875 shirley43769

      Posted

      Will mention the piercings to him, but he may be averse to those. may prefer to go through the Botox route
    • shirley43769
      shirley43769 shaq26875

      Posted

      Yes I guess it's down to personal choice. Hope he gets some relief soon 😃

    • shaq26875
      shaq26875 shirley43769

      Posted

      Son in law told me on that he did go to a plastic surgeon and got 12 injectins of botox...between brows >forhead>temples. (after Jane's comment regrding neurologist i had suggested to him that maybe he investigate further to which he agreed but a day later told me had the botox with the plastic surgeon ..so much for advice eh neutral)

      ?i will let update you as time goes on and see if it actually made a difference ...apart from getting rid of facial lines and making his face expressionless.

    • shirley43769
      shirley43769 shaq26875

      Posted

      Wow that's a lot of injections! I hope it helps him though. I did contemplate getting botox to help keep my eyes open but the person here that was going to do fillers/ botox etc stopped as it was going to cost them more with license than they would make because of living on a small island. Good luck to your son in law, and hope you are doing well too 😃

  • morelia100
    morelia100 shirley43769

    Posted

    Hi Shirley, sorry to hear that you may be joining the ranks of the Sjogrens population--or the autoimmune disease community. I would like to offer some advice which I have not seen in any of the posts yet. There is a treatment that has no side effects, which is basically making changes to your lifestyle so that you nourish, heal and strengthen your body. Thousands of people benefit from these changes and I am one of them. This is not easy, and many prefer medication over these changes. However changing your diet, using meditation, moderate exercise, restful sleep, reducing toxins in your daily environment--all these can contribute to the actual healing of your body. Do you have access to a naturopath? If you do, they can help get you started on a journey of actual, long-term, side effects-free healing. I just wanted you to know there is hope. It's real, but our addictions to our foods are real too, so it's not easy. Best of luck! I'm happy to share more details if you are interested.

    • shirley43769
      shirley43769 morelia100

      Posted

      Hi Morelia

      Thank you for your information. I'm not sure if there is a naturopath near me but I will look into it. Any information you are willing to pass on will be greatly appreciated 😊. Thanks again.

    • morelia100
      morelia100 shirley43769

      Posted

      Hi Shirley,

      There is much information out there on the internet and it can be overwhelming to sort through it. I will just list a few basics to start with.

      1. Eat mostly veggies and fruits

      2. Take out refined sugar, dairy, soy, wheat ,and corn from your dirt in a way that will work for you

      3. There are books online that are so helpful. I started with some paleo books, but I truly believe that diets are as individual as people are biologically unique. So use different books as a guide and you will figure out a diet that works for you.

      4. Follow the guidelines for eating mostly veggies and fruits, and avoid the other 5 as much as is possible, particularly sugar. Nourish your body with plenty of greens, and eat a wide range of different vegetables and fruit.

      5. Honestly, the only thing worth drinking when it comes to being healthy is water and herbal tea. Drinks are probably the quickest way to get sugar into your body, and sugar will not benefit your health in any way.

      Okay, that's it in a nutshell. The real work is in implementing an actual change. What gave me motivation to actually change my lifestyle to a healthier one, was simply my great fear of what my Sjogrens symptoms could be.

      Good luck!

    • shirley43769
      shirley43769 morelia100

      Posted

      Hi Morelia

      Thank you so much for that. I have noticed that occasionally orange and pineapple make my eyes tear after eating them. I love veg too, I love chocolate as well though 😢. I will try anything, just now my biggest fear is not getting a diagnosis/something that helps me see without having to hold my eyes open and not getting back to work. As I have mentioned before my eyes are the biggest issue for me at the moment as I am lucky enough to minimal aches/pains. Again thank you very kindly for your help 😃.

    • brenwag68
      brenwag68 shirley43769

      Posted

      Hi Shirley,

      My eyes are horrible too. I have early cataracts (my doctor calls them juvenile cataracts (although I am far from juvenile 😜wink) I have tried many prescription eye drops to help (my eyes burn, pain, itch, horribly dry) but none of the prescriptions worked, so finally he suggested restore (generic name) eye drops for the day & refresh optive advanced (non generic) for night time (the refresh is thick, so when you put it in everything is blurry - I put it in before bed) these both are otc...  they might be able to help you some... take care😊

    • shirley43769
      shirley43769 brenwag68

      Posted

      Hi Bren

      I am on lot 16 of different drops prescribed from docs and optician. I have a thicker cream called lacri lube that is like the one you describe for night time and I lube for day time but it has started burning a bit. I'm sorry to hear about your cataracts, I'm sure you are not too old for them to be juvenile😜. Do you have to wait to get them sorted? I know it's a long waiting list where I am (sorry don't know if you are in UK) but generally a successful procedure. I find coconut oil nice for soothing sore skin around my eyes at times. Take care 😃

    • shirley43769
      shirley43769 morelia100

      Posted

      Hi Morelia

      Sorry your last reply has been deleted, I put one with a link up before and it wasn't allowed.

    • jane75220
      jane75220 shirley43769

      Posted

      Hi Shirley

      If the cream is burning you then I suggest letting the  optician./optometrist/ophthalmolgist know as they may advise you to discntiunne the cream, drops etc.

    • brenwag68
      brenwag68 shirley43769

      Posted

      Hi Shirley

      No I am from the USA & so I have been told, here in the states Docs are not up on autoimmune diseases (& I believe it!!!)😡 My doctor said that my cataracts are not ready to have anything done with them. He said fortunately with having cataracts due to dry eye & not old age that it deteriorates slower. I have had cataracts now for going on 5 years. My mother developed cataracts 2 years ago (due to old age, she's in her early 70's now) & has already had surgery. So I guess it is a slow process, but still annoying... nice tip about the coconut oil, thank you 😊... I right now use aloe Vera cream, it does seem  to work, but my skin is so dry & itchy. The aloe seems to help with the itching... you take care Shirley 🤗

    • brenwag68
      brenwag68 jane75220

      Posted

      Hi Jane

      yes I have.. not that it has helped much... my cataracts are not ready to have treated, except for drops at this stage. The dryness is just causing the problems.... take care 😊

    • morelia100
      morelia100 shirley43769

      Posted

      Hi Shirley,

      I don't know why it was deleted. I didn't mention any book names, but I mentioned the name of a certain diet, and maybe that's why. I wish they were more open because people here need details. You can send me a private message and I will give you all the details. So sorry about your eyes, that must be a complete nuisance to your every day living. Eating healthy has helped me so much, and that's why I like to spread the word.

    • shirley43769
      shirley43769 jane75220

      Posted

      Hi Jane

      Thanks yes I have stopped using them (for all the good they were doing anyway 😑wink as I am allergic to preservatives in drops, even though these have no mention of any. I'm not bothered by fruit, apart from pineapple making one eye tear randomly just once. I have noticed that I can really smell the washing liquid I use even when it's in the washing machine!?!? This has only been over the past week or so.

    • shirley43769
      shirley43769 brenwag68

      Posted

      Hi Bren

      I always thought America would be further on in the field than Scotland! A small blessing that your cataract are slower to progress but a pest none the less. You are welcome for the coconut oil tip 😃 take care!

    • shirley43769
      shirley43769 morelia100

      Posted

      Hi Morelia

      Thanks for that, yes I wasn't thinking when I included the link but was just was wanting to pass info on. Thank you I will send you a message when my battery has changed a bit more! Thank you again 😃

    • jane75220
      jane75220 shirley43769

      Posted

      Sounds like an allergy or auto immune problem. I have had to substitute al chemicals for non chemicals.
    • shaq26875
      shaq26875 brenwag68

      Posted

      Hi

      ​the opthamologist put lacrimal plugs in both my eyes. seems to have stopped the burning (though i never thought i had dry eyes he did schimmer (spelling?) test and said i did). I also find that irritants like onions and cigarrete smoke dont make my eyes water anymore..though i do try and avoid that.  

    • brenwag68
      brenwag68 shaq26875

      Posted

      Hi shaq 

      never heard of lacrimal plugs (I'll look into that) at this stage I'll try / look into anything... my eyes do not have any tears so if onions need to be diced, I'm usually the one chosen for the job (no tears, 😂wink Take care

    • jane75220
      jane75220 brenwag68

      Posted

      Bren  Onions are banned in this house. They also catch my breath.

       

    • brenwag68
      brenwag68 jane75220

      Posted

      Jane

      Lol 😆 Yeah nothing makes my eyes water, onions do make them burn but never water... I do have asthma but onions are one of the things that do not

      take my breathe away... go figure 😜

    • shaq26875
      shaq26875 brenwag68

      Posted

      hi

      ​othamologist puts those in inner corner of each eye...takes about 20 seconds an eye. 1 eye felt no irritation whatsoever after done and one felt irritated for a couple of hours afterwards...so all in all pretty quick and painless.

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