Hi I’m Theresa I have Sjögren’s

TheresaMB
TheresaMB Member Posts: 3
edited 5. Oct 2021, 09:47 in Say hello

Hi, I’m new here..I was diagnosed with Sjögren’s just over 3 years ago. I know from my symptoms that I have probably had this longer. I suffer from dry eyes, joint pain and fatigue. I have now got osteoarthritis in my hands and knees. I don’t know anyone who has Sjögren’s and for a while I just wanted to get on with life and manage my symptoms the best way I could…until now. I don’t know if it’s just me but I find it so hard to stay positive sometimes telling myself not to over do it and learning to pace myself is really difficult. I want to push myself to do more and not feel tired but I know this just ends up making me feel even worse. I wonder if anyone else has any tips or ways they can share on managing Sjögren’s?? Thanks ☺️

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Comments

  • Ellen
    Ellen Moderator Posts: 613

    Hi @TheresaMB

    Welcome to the Versus Arthritis online Community. I see you have Sjogren's Syndrome and now Osteoarthritis as well.

    It sounds as though you have just 'got on with it' until recently and are now finding things much harder.

    You have definitely come to the right place to chat to people who understand pain, fatigue etc

    I'm not surprised you don't know anyone with it - Sjogren's is not a common condition, but there are people here who have it.

    I am attaching that link for people who might not know what the Syndrome actually is when they read your post. It might also be worth a read yourself even though you probably know a lot about your condition. For example there is a section (a long way down) entitled 'Coping with Fatigue' you mention tiredness as being an issue for you.

    Have a good look around the forum and join in wherever you feel comfortable.

    Best wishes

    Ellen.

  • kathleenT
    kathleenT Member Posts: 3,384

    Hello, I too have Sjogren’s. There are two types, Primary and Secondary. I have secondary as I have RA. Primary means you don’t have another autoimmune disease. Secondary means you already have an autoimmune disease (such as RA or Lupus) and Sjogren’s is secondary to it. There’s no difference between the two types, or the way they are treated. The British Sjogren’s Syndrome Association (BSSA) is a charity supporting sufferers, and has some useful information. To get a diagnosis is easier with secondary as you will already being treated by a Rheumatologist. You might need to see if your GP will refer you to either a Rheumy, or an eye specialist to get diagnosed. I have preservative free eye drops, there are also treatments for dry mouth, such as mouth spray or pastilles to suck. I also find sugar free chewing gum helpful too. If your dry eyes are really bad, there is surgery to try help remedy it. I looked into it but decided against it. You might find wearing tinted lenses or sun glasses if bright lights bother you. I hop this, and the information on VA or BSSA might help you. All the best to you.

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • jasles
    jasles Member Posts: 2

    helllo everyone my name is jasles i wunder if some one who has arthrits in there knees ever get pain and aches in there legs i hav asked doc but the question was just not answersed prop, iam worried sic about my legs hav any one experieneie this than u

  • Ellen
    Ellen Moderator Posts: 613

    Hello @jasles

    (Apologies @TheresaMB for hijacking your thread!)

    It's lovely to meet you and welcome you to the Online Community. There are plenty of people who use this forum who have Arthritis in their knees.

    I have heard people talking about pain in areas other than the area which is affected by their Arthritis many times before as you describe.

    This is an article about Osteoarthritis of the knee which might be of interest to you:

    It doesn't specifically mention pain in other parts of the leg. Is it below the knee I wonder and is it both? This thread is about people with Hip Arthritis who have what is called 'referred pain'.

    The helpline suggest the person talks it over with a physiotherapist. Now I don't know whether you are seeing one for your knees at all, but you do sound very worried maybe your GP might refer you for physiotherapy?

    Best wishes Ellen.

  • wazz42
    wazz42 Member Posts: 158

    Hi @TheresaMB

    I have Sjogren's as well. I have had it for a long time, Primary for me though as it was diagnosed after my autoimmune arthritis it was called secondary. However my inflammatory diagnosis was ultimately changed to widespread osteoarthritis that also puts me back to Primary I think. However as Kath says treatment is the same so I don't bother about that. i was confirmed by rheumy who sent me to an eye specialist who confirmed the diagnosis.

    Treatment is mostly about managing the symptoms - for dryness, involve your dentist and optician in these, they are the experts on what is useful in their areas. The fatigue is difficult to cope with, you find you are dragging yourself around but eventually you realise you need some quality of life and so need to manage it.

    I ended up cutting out lots of things - like ironing, and any other housework around. My oh is great, as were my children - on a Thursday, we liked the weekend free we all did some jobs together - as a treat we all played a board game at the weekend. I often sort of assemble meals, I buy frozen stew veg and diced meat etc so we have a good meal that lasts 2 days. Here's a link

    I kept a diary for a month to measure how often each symptom was around. I found out I had been minimising my symptoms to myself and could share my diary with my meds team. I'm a good few years on from diagnosis now so if you have any questions I am happy to help :)

    xx

  • TheresaMB
    TheresaMB Member Posts: 3

    Hi @kathleenT & @wazz42 its good to hear from you and your. I have Primary Sjögren’s and see a rheumatologist every 6 months, I take Hydroxychloroquine which I have noticed has helped with some of the symptoms. I have regular eye checkups also. I use eye drops daily and mouth spray/drops rather than chewing gum. I think the fatigue is the worst thing to deal with, my husband and family are great and understand when I need to just stop and rest, although I do feel like I let them down though as it stops me doing things sometimes..maybe I’m being to hard on myself! It’s good to know there are other people out there who know how I feel and can offer tips.. thanks 😊

  • wazz42
    wazz42 Member Posts: 158

    I think that is exactly it - it's ourselves that do the beating up about cancelling something or not being able to do what we had planned to do. I had a try at talking to myself as though it wasn't me but a friend that was feeling as I was and I was much kinder and understanding. My oh has wished at times that I would just have said 'not today' rather than seeing me making the effort to go on with a planned something.

    It's hard though, especially when my reserves are low!

    Take care

    xx