New to Sjogren's

Hello,

I was diagnosed with Sjogren's about 1 year ago. I'm still learning all the different complications and symptoms. In the beginning I had a lot of muscle aches and joint pain but recently, I had my first major "flare" and was experiencing muscle aches, fatigue, flu symptoms and lymph node swelling. I took two rounds of steroids to get it somewhat under control. I'm feeling better for the most part but I still have the swollen painful lymph nodes or at least I'm assuming that's what the pain along the side of both breast is. During the flare I had pain in my neck, underarms, breast and lower back but now it's only around the breast area.  My rheumatologist seems to be a bit of a rock star and hard to get in to see and during the visit very rushed to get out and not answering many questions. I was hoping to find someone here who could verify these lingering pains are indeed normal and due to the Sjogren's and not something I should have checked out.  I've also had a hard time finding my specific symptoms under any Sjogren's forum. each time I search them, I end up on a Lupus forum but doctor doesn't think I have Lupus. Any advice would be appreciated.

9 Replies

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  • Hi

    I've recently (2 weeks!) been told I probably have sjogrens. I am certainly not an expert and I'm sure you will get a more educated response than mine. 

    I too had similar experience with rheumatologist and when I research my symptoms fit with lupus not sjogrens. 

    I've had sore breasts for ages now and more recently under arm pain. I'm seeing the endochrinologist on Monday about adrenal gland issue so I'm going to mention my other sore bits too. Ive read that the petuitary gland controls adrenal gland and petuitary issues can cause headaches (check) and breast pain (check). 

    My understanding is sjogrens attacks glands so my suggestion to you would be speak to your GP and at least get your symptoms logged for future reference (might help spot something in the future particularly if you are thinking lupus) and ask about referral to endochrinology. My instinct is to get breast pain checked out regardless of sjogrens. 

    Best of luck and I'll let you know if I get any pearls of wisdom from my appointments next week

    X

  • thanks for your reply. I wasn't aware that pituitary issues can cause headaches and breast pain so that is helpful information. I only thought of the lymph nodes. That could be why only that area is bothering me at the moment and not all of the lymph node areas.  I do think that Sjogren's and Lupus are very similar and share many symptoms. There seems to be just too little study on Sjogren's at the moment.

  • Lupus and SS are cousins and very similar symptoms, I have both. I have found the medical proffession to be most unhelpful I do think that they do not have much knowledge on either disease. The last thing you need is paying large amounts of money to visit a specialist and being more or less pushed out the door. SS is very difficult to diagnose as it mimics other health problems.

    Maybe you should try to seek out a different Rheumatologist I was very miserable for quite a few years until I was recommended to go onto a natural remedy called Mannatech which supports healthy cell growth. It has been absolutely wonderful and I am not on any pharmaceutical medications anymore. I have to send to Australia for it as its not available in New Zealand where I live. You can google it and find out more.

    I would suggest that you try to seek help from a doctor until you get to the bottom of your pain and in the meantime seek out Mannatch.  I have been on it 4 years now and my health has improved to such an extent I can walk and cycle and live a normal life.

    The doctors don't seem to be up on natural medication and some frown on it but it is worth a try. It will take months to kick in depending on how long you have had SS so stay with it and be patient as you will benefit from it in the long run. I take it all the time, am on the complex powder and the plus tablets. Good luck. 

    Traveller.

     

  • thank you so much for the information. I'll look into it. I believe anything is worth a try!

  • Hi there. I saw your post yesterday, but was in the car ALL day picking my children up from schools in different parts of the country and by the time I got home I was too exhausted to sit at my computer. I just wanted to say hi and that your story sounds very similar to mine. I was initially diagnosed because my gp found that I had thyroid issues and sent me to an endocrinologist for review. The endo did a host of blood tests and because of autoantibody readings??? ANA and anti Ro etc he sent me to they type of rock star Rheumy that it sounds like you are seeing. He told me that I had sjogrens, told me to take hydrochloroquinine...and steroids when necessary, and I should go back in 4 months. All a bit of a whirlwind!! I carried on feeling grim and I knew that whilst I definitely have some Sjogrens symptoms (really dry eyes), I also have a very obvious malar rash, am photosensitive and lots of aching muscles and joints.

    When I went back to my GP he said that I should get a second opinion. Now I see a very kind, gentle rheumy (who I see every 4-6 weeks), he says that I have a Lupus/Sjogrens overlap and that it is quite common to have both. Apparently when you have one autoimmune disease, you often get/have others. I have a few. 

    I'm sure that here are natural remedies that help...and I trained in homeopathy, so really trust in it...but, this all seems just a bit too complicated until we have our illnesses under control...and we understand what we are dealing with. At the moment I am feeling rubbish and my Endo wants me to have a pituitary MRI next week and then start to take steroids to help my adrenals....for life!! That made me cry. I had an appointment with rheumy a couple of hours later on Thursday and he said that the steroids would make me feel better and then he could work on getting me off them and on to something that would be better? Most of the time my head is in too much of a fog to understand what they are saying. We just have to trust that they will help us as much as possible.

    If I were you I would also join the Lupus UK site on health unlocked. The diseases have some very similar symptoms and often overlap, so you would find lots of information about Lupus there. 

    I hope you feel better. x

  • thanks so much for your reply. I did read that the autoimmune diseases overlap and it's not uncommon to have several. I'm not sure it matters what to call each disease because it seems we are really just treating the symptoms anyway. I am on hydrochloroquinine too and it has helped me a great deal but I don't want to rely on it in case I'm forced to stop taking it due to the eye complication. My Dr. told me the next step up from this drug is a low dose Chemo drug. That scares me even more. Will the steroid you'll be taking be a low dose daily treatment? My Dr. didn't say that was an option.  I'm also hoping to find a healthy diet I can actually live with and would be interested to know if certain foods helped others or foods that made it worse. I suppose that could vary on the individual.

  • If you think it's your lymph nodes you may benifit from a lymphatic drainage massage to get everything moving again.

  • thanks, I'll check into this.

  • Hi I was definitely diagnosed with sjogrens 6 mths ago very similar symptoms as yourself. I also have sore joints and muscles and severe exhaustion at times. On plaquenil and Lyrica which helped a bit went through course of rituximab 5 mths ago which reduced lymph node swelling and some of aches. Has been a hard road as took so long to reach diagnosis now have to find ways to control symptoms so can live my life again - good luck

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