1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Still Sjogren's? New Symptoms Worrying Me

Posted , 17 users are following.

jackiegirl
jackiegirl

Hi guys!

I'm new to this forum & hoping someone might have experienced symptoms like I have recently or might have some helpful tips/answers as I'm not getting much out of my doctors at the moment & it's leaving me feeling pretty scared.

To give you an overview--I'm 30 & have had Sjogren's Syndrome for 5 years now. Around 6 years ago I started having extreme fatigue & found I have an underactive thyroid & then my blood work & symptoms led my previous rheumatologist in the U.S. to diagnose me with Sjogren's Syndrome. At one point she thought I might also have Rheumatoid Arthritis (this was probably encouraged by the fact that my paternal Grandmother has terrible RA), but over the course of the few years my rheumatologist decided it was Sjogren's only. My main symptoms the first 5 years were extreme fatigue, very dry eyes/dry mouth/dry vagina & sometimes feelings of weakness in limbs. I felt like crap & exhausted easily most of the time but I never had any significant noteworthy pain.

I now live in Australia & haven't seen that rheumatologist in a little over a year. A few weeks after seeing that rheumatologist while I was visiting home I returned to Australia & started having strange new symptoms. The trip home was fun but exhausting & the long travel back to Australia seemed to set off a "flare up" of something--muscle spasms/twitches all over my body, random pains, headaches & foggy brain, & lots of tingling (tingling primarily in lower legs). My GP here in Australia was worried I have MS so an MRI was done on my brain & spine. There were two lesions found in my brain but not in the area that MS generally affects & not in what is considered the "danger zone" for lesions. My spine showed 3 points of inflammation but overall the MRI place, my GP and a neurologist all said they did not think it was MS. They didn't really provide any alternative answer though, just that it wasn't MS & not to worry. After several weeks of rest & taking it easy I started to feel better. My muscle spasms never completely went away but they severely declined & no longer worried me as there were so few compared to before.

Fast forward to a few months ago (approx 8-9 months after previous flareup ended), & the same type of symptoms came back but with a few new ones too. The new ones are stabbing pains that occur randomly all over my body (these stabbing pains feel like they occur in both my muscles & bones). A few areas seem to be more frequent then others but the pains are also pretty random. Also an alarming new symptom is unexplained bruising in my lower legs that has been there for over 3 months now. The bruising gets lighter when I'm sitting down & darker after walking/exercising but never completely goes away. The "bruised" area feels sore & sort of numb at the same time. Other symptoms that have come back are muscle spasms/twitching all over the body (even in my nose which I didn't think was possible?), chest pains, difficulty concentrating with headaches brought on the moment I feel the least bit stressed or where I have to concentrate, & my lower legs constantly feel strange (a mix of tingly/tight as if I need to stretch the muscles even if I haven't used them).. My arms between my elbows & wrists feel this same way but not as bad as my legs. And I've noticed that when my arms are lower not elevated they feel more normal than when I'm driving & my arms are raised. My arms feel the most uncomfortable & strange when I'm driving & have them raised to the steering wheel. Overall i've noticed that my symptoms get significantly worse when I feel stressed at all. They never completely go away but the symptoms ease up significantly when I'm home on the weekends than when I'm at work.

When these symptoms came back a few months ago I assumed it was my Sjogren's having a flareup so I went to a new rheumatologist here in Australia, since I figured it was time I started seeing a local rheumatologist where I now live instead of only visiting one during my home visits. Anyway, he did blook work & all of my blood work came back completely normal as a non-autoimmune person would have. This made this new rheumatologist say he thinks I actually have a neurological problem & don't have Sjogren's at all since it's not showing up in my bloodwork. He even advised I stop taking the Plaquenil I've been on for the past 5 years! This upset me since I've had such dry eyes/mouth/vagina for over 5 years & I've read that Sjogren's can sometimes "hide" from bloodwork? Now I have to request reports from my previous rheumatologist in the U.S. & basically convince the rheumy here that I do have Sjogren's. Obviously I would love to not have any health issues, but it was upsetting he would so quickly say that I don't have any rheumy issues & that it's all neurological.

I think I do need to see a neurologist, but unfortunately it seems people often have to wait several months to get in with a neuro as a new patient & I refuse to go back to the previous neuro as she made it quite clear she thought I was silly for being worried it was MS without the brain lesions in the "danger zone" area. I'm feeling helpless because my new rheumy says it's all neurological but then the neurologist I previously went to said it was all rheumatology related. I would very much appreciate any insight or people who have dealt with symptoms similar to mine as I helplessly wait until I can get an appointment with a new neurologist. The main symptoms that worry me are the muscle spasms/twitching, stabbing pains & headaches/blurry vision when trying to concentrate.

Apologies if I've bored you all to sleep with my long ramble! I'm just feeling scared & helpless at the moment, & I'll admit I'm really hoping that this is all still related to Sjogren's & not something more scary like MS.

Thank you for listening!!smile

1 like, 28 replies

28 Replies

Prev
  • lia23756
    lia23756 jackiegirl

    Posted

    Hello,

    I also Have your symptoms (including Bruises). Is there improvement in your condition? What the doctors say?

  • jackiegirl
    jackiegirl

    Posted

    Hi all, thank you very much for your responses before. Just a quick update - my doctors seem to have finally figured things out & are now thinking my problems are related to Ehlers Danlos Syndrome & orthostatic intolerance (which is common in EDS people). I had a lip biopsy to test for Sjogrens which came back inconclusive & any Sjogrens/autoimmune markers are currently hiding from my bloodwork so there is a chance I do have Sjogrens but they're more confident it's EDS causing the majority of my health issues. It was pretty interesting being told there's a good chance I don't actually have Sjogrens after I took Plaquenil for it for so long...I had never even heard of EDS until recently but it is also common for people with EDS to develop autoimmune issues since our connective tissues are already genetically abnormal with EDS. I'd advise anyone with joint hypermobility & bruising to learn about EDS as it seems people with EDS are often misdiagnosed with something else & EDS can cause an enormous range of symptoms & complications. People with EDS need to avoid corticosteroids such as prednisone & other meds commonly prescribed for AI issues, because it actually damages collagen and make EDS symptoms worse.

    Just wanted to share what I've learned & bring awareness to EDS.

  • Snoyla
    Snoyla jackiegirl

    Posted

    Hi jackiegirl! I've just read your posts, and your situation sounds exactly like mine!! I'm also an American living in Australia permanently, I've been here 5 years. I've been through a lot of the same tests, etc, and they usually come back "inconclusive " which is so very annoying!! I'm glad to hear they've ruled out MS. Is your rheumatologist still sure about the EDS? Mine mentioned that could be part of my problem because of lifelong hyper mobility, but as there's no real treatment for EDS, his dx is basically just "a connective tissue disorder."  Because I tend to get odd flushing  and skin discolourations (which he insists are actual rashes), I think he's leaning more toward lupus. My ANA has come back positive only twice in about 10 blood tests in the past few years. I'd love to talk to you more if you'd like 😊  I have similar worries about the stress all this has on my hubby, and I sometimes feel like no one understands.  I live in rural northern NSW.  Coming from America, and flaring up so terribly since I've lived in Australia, I sometimes think that maybe I just can't take the sun and UV radiation here! I have bad reactions to the sun🙁 I'd love to hear from you. Hope you're doing a bit better.  

  • sujones5861
    sujones5861 jackiegirl

    Posted

    Hey

    After reading your blog on your experiences with Sjogrens I can completely relate to your story  ... unfortunately!  I was diagnosed with Fibromyalgia when I was 26 and at that time Fibromyalgia was a catch all for symptoms and when cra really didn't know what a patient had.  I totally ignored him!  Later in life I was diagnosed with Sjogrens.  I have had Sjogrens for nearly 12 years now.  Do not let a rhemo tell you you don't have Sjogrens especially when you have been diagnosed previously.  Being military I was forced to go to the base and have a rhemo there although I had been seeing one off base for a while.  He told me because my blood work appeared to be fine he did not believe I had Sjogrens and refused to prescribe plaquenil for me and decided I only had Fibromyalgia.  We moved to NC and Although I continued with the dryness I started developing other symptoms and decided to go to my provider who ran blood tests and confirmed Sjogrens again and put me right back on the plaquenil.  I was told by my good rhemo in Ohio that Sjogrens can go into a remission and hopefully stay with continued treatment.  Needless too say I have been suffering consistently and can't seem to get into a remission again.  For the last week I have been suffering with my legs.  It's hard to describe I say someone in there tickling from the inside and it's driving me crazy especially when I am awoken by it.  It was interesting to read about your twitches etc as these symptoms have occurred also.  I have an appointment with my rhemo in a couple of weeks and shall address this with them.  Do not let a provider make you feel crazy!  You know your body and what you are feeling.  Sometimes we have to remind providers that they are working and being paid by us!  Believe me you are not crazy!

    Thank you for sharing!

  • morelia100
    morelia100 jackiegirl

    Posted

    I do believe that Softens and most  autoimmune diseases are affected by sun.  I try to be cautious with the amount of sun  exposure I get.  I also just looked up some of the side effects of Plaquenil, which include bruising and discoloration of skin.  Just thought I would mention it in case you haven't already thought of it.  The description also stated that if you have bruising you should see your doctor about it as it relates to Plaquenil.  Take care.

  • jodie39832
    jodie39832 jackiegirl

    Posted

    Hi Jacquie, can I ask, have you ever had any type back surgery, epidural steroid injection or epidural or Myelogram? I have another theory if you have. Jodie
    • ebvreactivated
      ebvreactivated jodie39832

      Posted

      Hi, I have lots of bruises on my legs and I had epidural but 3 years ago. Can you please, provide me with information you have? The bruises are getting bigger during the day.

      Thanks

      Christine

    • ebvreactivated
      ebvreactivated jeremy04366

      Posted

      NO, I still get them on thighs, and they look pretty strange, I have big and little ones which don't change color when pressed. My GP did a blood test for blood clotting I think which cam back normal she then didn't do anything else. I also have terrible itching.

    • ebvreactivated
      ebvreactivated jeremy04366

      Posted

      No, what tests do I need for that? I have elemenated wheat and dairy from my diet 2 months ago but no change. I'm losing weight because of diets and on top of all I have diarrhea now and don't absorb anything well.

      What about you, did you find out anything?

    • jeremy04366
      jeremy04366 ebvreactivated

      Posted

      I have celiac, you should ask your doctor to do a celiac antibody test but you will need to eat gluten before taking it for about two weeks . It causes malabsorption and hives. To be checked for mast cells or histamine, ask your doctor to do a blood tryptase level test and a 24 hour urinalysis for histamine levels. I would also recommend seeing an allergist to check for food allergies. All of these can go and in hand.
    • ebvreactivated
      ebvreactivated jeremy04366

      Posted

      Thank you. I developed more allergies during this year than during whole my life. I have terrible itching and after itching my skin swells, so strange.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.