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

Sjögren's gets me down

Posted , 8 users are following.

topsy-turvy
topsy-turvy

Hello.  I'm 48, diagnosed with Secondary SS last month with RA.  My mum, 83 has been suffering with the dry symptoms for 30+ years, diagnosed properly just over 10 years ago.  Seems like I am noticing more and more symptoms recently, increasing and I am not happy about it coz it hurts sad  To help I am a pescetarianism (very occassionally I eat cod, tuna, mackerel or trout) 2 years ago, I eat mainly raw foods or subtley cooked foods (vegetables), Rice, Pulses, Quorn products are good too.  Water, sometimes with a little PLJ (lemon) or apple and elderflower juice.  I now love Rye and sunflower seed bread too. I avoid gluten as best I can. More products are wheat / gluten FREE here in Cardiff but so much more expensive sad  I quit smoking 4 years ago, Massively cut out sugar (frustose), No to cow products, Yes to Soy, I still have coffee with vanilla soy or tea with plain soy, I still have a Merlot wine or twos, still like a kit kat or twos, love New York style cheesecake from Waitrose ooopsy !! but can't resist it!  I work part time, still walk my collie dog twice a day albeit much slower and can no longer climb steep, slippery hills or run alongside him without moaning out load "I'm dying!".  I slipped yesterday at home and nearly did the splits ! OUCH!! My right knee made 2 bone cracking sounds but fortunately not broke.  Sore and limping like an old, old lady today and more moaning "I'm Falling Apart!".  Taken me over 2 weeks to get better from bronchitis / laryngitis (viral) which I often had as a child around stress (exam times), whether this is significant I am not sure.  My SS symptoms are escalating: In no particular order: Rheumatoid Arthritis, Dry Eyes, Tiredness, Sweating, Hoarse, White Tongue, Acid Reflux, Brain Fog, Heart Palpitations, Swelling, painful feet, Dry hands and feet, Swollen lymph nodes in throat and left armpit, Peripheral Neuropathy (numb) in right knee, Irritable Bowel Syndrome, Teeth cavities, Mouth ulcers, Swollen eyes AND more recently DEPRESSION.  And so to bed to rest some more .. this forum is a good place to de-stress smile Thanks for reading razz

2 likes, 20 replies

20 Replies

Prev
  • topsy-turvy
    topsy-turvy

    Posted

    I'm back .. don't know where I been exactly .. is this another symptom where you can't figure what you been doing for the last few days, hours or minutes ? Is this what people here refer to as brain fog? I kind of know, but can't piece all the bits together as I used to.  I am yawning everyday from 2pm onwards also .. Gets abit embarassing coz it's difficult to hide a yawn at times .. redface.  I have made a big decision and that is to apply for Personal Independence Payment (PIP) benefit which replaced the Disability Living Allowance (DLA) benefit in the UK.  I have been working since I was 15 years old, and constantly studying to give back and  improve my future for 33 years. Currently, I have 2 part time jobs, one is a regular contract position in a primary school which I thoroughly enjoy.  The second other supporting disadvantaged children, I am on call for this job but have not had work for 4 months.  I have been feeling overwhelmed with the ideas of applying for, being interviewed for and starting a new job to increase our household income.  It's taken me 4 years to start talking to my co-workers about personal things other than work issues.  I have had social anxiety for many years and no matter how many Self Esteem, Confidence Building, Healing, Meditation, Medication, Exercise and other tools I have gathered along the years, I still find it a huge effort to have a conversation with someone face to face.  I will do it, if I have to, if I don't I wont. At times, it tears me up inside and this in turn, adds to my S symptoms.  Believe me, I was like you described ally82777, bouncing around, doing this and that.  Popular, happy to be busy.  Before I was married, I relied on noone and now my husband is the main breadwinner (fortunately he loves his job) and I still have many responsibilities I try to keep on top of .. but of late, with the aches and pains, the depression that I can feel creeping in daily, the tiredness is growing too .. On top of that, we have financial concerns to cover the costs of basic living including recently our darling daughter going up to High School costs: uniform, school 'team building' trips, piano lessons all of which she thoroughly deserves since she is a hard working, kind, sensible, creative girl.  It frustrates me that the healthier foods we eat are more expensive too!   This is why I shall be trying to apply for PIP since from what I have read, I fit the profile to apply for it .. After all, I have a "chronic multisystem inflammatory disorder" .. for me, this will help take away the stress I have to help financially support my family.  This is a lengthy process and I hope I am successful.  Off to collect daughter from her first away Netball game now .. thanks for reading.lol 
    • frustrated61
      frustrated61 topsy-turvy

      Posted

      Hi Topsy ~

      You sound like you have a very full plate in front of you.  You do sound busy w/o even having two jobs.  Just taking care of your family and cooking/cleaning etc says a lot about that!

      I hope you get that PIP soon!  If its' anything like the US social security, it is a lengthy process however, I had a lawyer that sped things along and it took approx 8 mths.  Seems like a long time but in acutality it was a very quick return, from what I was told.  Do you have to have a lawyer for this PIP or do you have the choice of going before a judge yourself?  I had so much information from my doctors, i could have probably gone before one myself, but that process would have been almost doubled the time w/o a lawyer.  So, just a suggestion, perhaps help would be of the essence.  For the US they lawyers do not get paid unless there's an outcome in the parties favor.  Then, the payment was taken from the outcome of the case, meaning he could take 10% of my gain or no more than $5,000.  It was a fair amount since i hadn't had that money to begin with, my purse was a great deal more than he made, for sure.

      I wish I had the stamnia to work.  I was declared disabled after the first auto accident.  I tried working afterwards for a year (against my doctor's advice) but, I did that because I truly thought by giving up (which was my mindset) wasn't an option.  By the end of the first year, I knew that what I was doing was making my family suffer.  I'd work, come home and sleep until I had to get up for the next days work..it was awful and I was missing out on my family.

      Anyway, I'm now rambling. However, I'll add, with the combiniation of my disabilities, the sjogren's surely doesn't help.

      Frustrated

    • topsy-turvy
      topsy-turvy frustrated61

      Posted

      Thanks for your reply frustrated61.  I like reading your posts as you come across as a vibrant lady, despite the accident you mention and the SS.  Also I think we have a common like, and that is spiritual well being ... am I right ? I been following a spiritual healing path for a number of years now and it gives me much comfort.  Fix the mind, body and soul .. I'll try anything me to fix things and if it aint broke, leave it alone cheesygrin.  I got the help of a registered charity called the Disability Advice Project who help completing forms, help build the evidence I need, attend appeals too.  If I did this application myself, I would more than likely lose.  But with the support of the DAP they take these applications seriously.  It's hard to 'give in / surrender' to this disability, particularly when before I was so active and able bodied.  Tell me, do you have a symptom whereby you bruise easily or, more to the point is, you can't figure out how you got bruises on you ? Maybe I am becoming more clumsy or un-cordinated because I fear the pain that comes when I, for example, walk (jog!!) up the stairs and catch myself then sway a little ... i dunno .. I am becoming incredibly physically self aware to preserve my body as best I can. I will do some research too on this when I am not so fatigue but thought I'd type out loud. It's evening time here and I have finished preparing dinner of gnocchi, broccoli, cauliflower with mozzarella balls, tomato and pesto sauce .. can't resist these cosy ingredients.  Thanks for reading.  
  • trix70
    trix70 topsy-turvy

    Posted

    Hi topsy-turvy. I hope you don't mind me asking, but how did your claim for PIP go? I work, and was recently diagnosed, I'm so very tired all the time, and in pain with my knees, I'd like to cut down my hours but simply can't afford it. If I could successfully make a claim, it would help so much, and I could keep working. Thanks in advance. X

  • Cowgirl918
    Cowgirl918 topsy-turvy

    Posted

    You sound like me. And I also walk my collie dog. I do it more slowly than ever and we stick to roads or well defined paths.  I can fall over air neutral .  I agree that it helps to vent and de-stress here. It also helps that other folks understand your symptoms and don't think you have lost your mind. I have become very consistent with my self care to minimize symptoms. It's easier now that I no longer work. Hang in there. Good days still ahead.

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.