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How do you cope at work with Sjogerns

Posted , 6 users are following.

daniw83
daniw83

Hi all,

I do office work & the past couple of months im finding the arm pain unbearable, achy, no upper arm strength, weak,numb etc the pain feels like it travels, to under my armpit & also hurts when i lay down. Rheumy - says nothing is swollen so nothing wrong. Ive tried various physio, ostepath plus other treatments. Does anyone else have this?... The thing is i keep having to go of sick cause of the pain & my work arnt happy & keep threatening me with losing my job! Its geting to the point where im wondering what other job i could do. ? Xx

1 like, 20 replies

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  • phyllis75890
    phyllis75890 daniw83

    Posted

    I wonder if you have fibromyalgia along with the Sjogrens, I have both.  It doesn't cause a any swelling, just pain and some neuropathy.  You might want to get a book on it, but your Rheumatologist should be able to diagnose it.  

  • SjoDry
    SjoDry daniw83

    Posted

    Yes...Daniw83,

    I deal with a lot of pain. In fact, I go to a pain clinic to manage my meds. I work FT and would not be able to unless I could manage the pain. I don't know if you have ever had a neurological work-up or not. It is not uncommon for Sjogren's patients to have nerve involvement (Sjogren's is a disease of the small nerves). The damage will show up with the right neuro tests. It is not in your head. I would however document what your employer is saying to you.

    And pain is pain..no matter what the job is..switching jobs does not mean your pain will stop or go away. The only reason my daily fatigue/pain is not a problem for me is because my husband & I own the business..so I lay down when I need to, etc.

    I would think about getting some further testing. This would help give you answers/treatment and provide the documentation of your chronic condition for your employer.

    Hope you get some relief soon.

    Take Care.

    SjoDry

    • daniw83
      daniw83 SjoDry

      Posted

      Hi, SjoDry thank you

      Rheumy has done a neuro test where he put a pin in my feet & tested reflexes. Is that the test you mean? He said movement was fine. Altho physio im having says right arm is very weak. Yeah i was thinking that no matter wot job i do the pain isnt going to go. I was on hydroxychloroquine but was allergic & rheumy wont give me any more drugs. Im on codene, pregabalin, amtripline & naproxen. Doc has refered me to a pain management programe but very long wait. Thank you xx

    • deidra40034
      deidra40034 daniw83

      Posted

      ..Hi Dani...the hydoxychloroquine...aka plaquinil (sp) is the one that damaged my eyes.  And once it causes damage, it is not reversable.  Shoot.  I'm sorry it did not work for you, as it is a good one.  That codeine is not going to do much for you, and it is not good for you to be on for long at all.  Maybe short term, after surgeries.  You need a steriod of sort, in as low a dose as you can, as those are not great either, but at least they will help you pain wise!!!  And not make you feel like you are doped up!!!  The Kenalog injections are a steroid injection, they just give it to me in my backside.  It pretty much covers inflammation of my joints, tendons, and to treat my arthritis, and I also have bursitis in my hip.  When I get bad flare ups of both arthritis and SS, I can hardly move as everything hurts so darn bad.  They will give me the shot, and it can take about 3-5 days, but it calms everything down, and oh what a difference.  Like I said before, since I can not take a lot of the other meds, this really helps me!!!  It is really my favorite one, I have NO side effects, and my doctor is very careful to not give me more than the 3 shots a year, he will if I have to have something, but ONLY IF I am a real mess.  He knows what he is doing, and I completely trust him.  I have been going to him for years now...12 to be exact.  My SS  is my primary, then came my RA, Raynauds, Fibro, and now Lupus on top of it all.  Between the Kenalog shots and the Imuran, which is new in the last coupleof months, is helping, especially with the dry mouth.  We will see what happens with the organs now...I don't know if that can be inproved or not.  I am more concerned with my liver and kidneys than anything right now.  My blood work is looking better for the kidneys, I have been in acute kidney failure since February, but the last 2 blood draws look better.  Fingers crossed!!  I am beginning to look like a pin cushion...I get blood work every 2 weeks.  I am tired of it!! eek  I'm afraid to sneeze...I might spring a leek!  LOL

    • deidra40034
      deidra40034

      Posted

      A couple more things...I also now have peripheral neuropathy in my feet and lower legs...also from SS, as I do not have diabetes, and not over weight, but maybe 10 pounds.  I have tried doing the eating certain foods, and cutting out certain foods, and I know it works for some people, I tried it for 2 years religously and finally gave up.  I had just as many, if not more flare ups as I do now.  I do eat healthy anyway, and mostly organic just because I like to, and it is healthier.  But you know, I am so uncomfortable most of the time, and I just decided to enjoy what I want at this point, but like I said, I do eat healthy, but I am not going to give up everything I do enjoy.  Life is too short!  That does not mean I go out and eat pizza, and bad stuff every single day...but once in a while, I will enjoy it!  All things in moderation!  And I am not a drinker...good heaven's...with all the medications I take...I might not be here now!  LOL 

    • daniw83
      daniw83 deidra40034

      Posted

      Deidra

      You made me laugh... Lol feel like a pin cushion & afraid to sneeze. Sounds like youve tried a lot... Its exhausting isnt it. Fingers crossed il have better luck at the hospital nect time xx

      Xxxxx

  • dee53012
    dee53012 daniw83

    Posted

    Hi Dani,

    It is hard to find work when you are sick and tired!!  I'm in The US and had to go on disability. I could barely walk at the time.  I do not have sjogrens but I do have autoimmune diseases. 

    Not a lot of help I know. 💔

    Hugz,

  • mandy95
    mandy95 daniw83

    Posted

    Hi daniw83,

    I also get that but take Mobic for it I find that this works quite well.

    Regards,

    Mandy

  • deidra40034
    deidra40034 daniw83

    Posted

    Hi Dani,

    ?I am so sorry you have this, It is not a pleasant thing for sure!  I agree with one of the others that posted about keeping notes about what your employer has said.  Do they know you have SS, and what it can cause?  If not, I would find as much info for them, and make copies, or have your Rheum. Doctor advise them.  I also have other Auto immune issues along with my SS, and my SS has gone inside to my organs, and it all has become a real mess.  I am older (61)and retired for a long time now.  I take a lot of medications, but I can not take the one main med for my SS that most can take, as it caused damage to my eyes in the first 3 months.  It is however, not common for most people to have that reaction.  I am on Imuran at the moment, as Methotrexate made me very sick, and caused all kinds of problems, they even switched me to the injections, and that was even worse, so I had to stop that.  I had my Kenalog shot a couple of months back, and that has helped my bones, and muscles.  However, they really don't like to use that one unless they have to, but for me, they will, as I don't have much else I can use.  I am also on Prednesone, and have been for a long time, which also is not great.  But, it keeps me out of pain, sort of.  You may want to try meds to help with the discomfort, as someone else said, the pain is going to be there no matter what work you do...unfortunately for you.  The only other thing you can do is to go on Disability if you can.  Even if it is for a short time until your doctors can get a handle on your symptoms, and get the meds worked out.  Your employer may be able to hold your position that way.  Here in the U.S., I know it is different than in the U.K. 

    ?I wish you a lot of luck!!!  I would check into as much information as you can, to see what you can try.  I swear by my Kenalog injection, it really calms things down, now it is not a end all, but it helps, and you may need up to 3 - 4 injections a year, as sometime the first or second don't last long in the beginning.  For me, they can last up to 6 months each, but I have been taking them for a long time.

    God Bless!

    • daniw83
      daniw83 deidra40034

      Posted

      Hi, deidra

      I have a big hospital folder & explain to my boss what's wrong but they dont want to hear it lol. I was thinking about applying for PIP but not sure if this covers ss.

      Whats a kenolg shot? Is that for SS.

      I am hoping that my next appt end of nov they will decide something for me xxx

    • deidra40034
      deidra40034 daniw83

      Posted

      Dani...disability is disability, a note, along with information from your doctor, and information that you have in your folder should be plenty of information for PIP...I am not sure what that is, but am thinking it is the same, or similar as our Social Security/Disability coverage here in the U.S.  Once they know the issue of pain, and missing work often, I think they will not have any problem.  Also, you need to make sure you have a really good Rheumatoid Arthritis doctor.  I am sure your GP is ok, but the RA doctors are who treat SS, and are more up to date on the correct meds for us.  They are our most important doctor!! 
    • daniw83
      daniw83 deidra40034

      Posted

      Thanks deidra

      Yes your right a disability is a disability. My doctor is going to refer me for another opinion.

      Aww thanks so much

      Xxxx

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