Career / working etc etc...

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Hi All. 

I'm looking for a light at the end of a tunnel, and hoping someone will be able to share some positive stories. 

I'm new to having a condition, well...  Had my first major flare almost 6 months ago with ongoing issues which makes everyday life difficult. looking back I think it started almost 2 years ago with cancer being the trigger (not the cause) 

For those who have read my previous threads, I've got two GP's and an oncologist team who suspect that I've got Lupus, and I am still waiting to hear about my appointment with a Rheumatologist.  officially been over 3 months waiting now since referal. Meanwhile my career is suffering to the point where I have to close my business. 

Being a work a holic and very career minded.  Can anyone advise me what life is like after proper diganosis and treatment.? Does things actually get better? Will this fatigue ever go away?

Feeling very concerend about what sort of future can be forged, which I believe is only natrual. 

regards 

Andy

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10 Replies

  • Posted

    Hi, Andrew,

    Yes, things do get better once treatment starts. I had about 10 years of various aches, pains and generally feeling zombie-like on as little as 2 - 3 hours sleep a night (due to a combination of pain, snoring partner and shenanigans of cats!). Within about 3 weeks of starting Amitriptyline the level of neuropathic pain decreased enormously and things got a lot better once I started Hydroxychloroquine. I have roughly 1 or 2 flares a month but so far they have been very minor and short-lived. Only had three really bad flares in the time treatment started, a little over two years now. To be honest I couldn't tell what was a flare and what wasn't before starting medication, but now I can tell the difference and can see a definite pattern. I am sleeping better most of the time and despite a very heavy workload at the moment I haven't needed to take time off. When I have been off work it has been due to Trigeminal Neuralgia which may or may not be connected to the 'whatever it is!'

    On the downside, though, I still don't have a definitive diagnosis, just mutterings of some sort of inflammatory arthritis, possibly low-grade Lupus, possibly Sjogrens, possibly Palindromic arthritis and so it goes on!

    Keep your spirits up and I hope things get better for you soon.

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  • Posted

    Welcome to our world,things hopefully will get better once your on the right medication for you, I was diagnosed almost 6 years ago,and it took about a year to get to some kind of normality,I'm working 4 days a week at a hospice,but I have to rest an awful lot,which iv got use to,but that has taken time to adjust,as like you I was a busy person,but as long s I look after myself and take life slow I'm fine to work,which means a lot to me,my OT at the hospital once said you have 2 choices now sit at home with your blue badge or get on with life,for as long as you can,I choose the later, so head up things will get better but they will be different,good luck.
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  • Posted

    Andrew,

    Another answer to your question.  My sister has Lupus, diagnosed in 89 when she was mid thirties.  This disease is different with every patient and every day.  She has had a very difficult time, diagnosis took a long time and finding the right Rheumatologist took a long while...getting the appt over 4 months.  Her path has been very rough, she has developed other Connective Tissue Diseases, Raynauds snd Sclerederma two of them.  She has recently had to undergo an amputation.  I hope your Lupus doesn't morph  into the Mixed Connective Tissue Disorder, as hers has.  Keep your Rheumatologist appts, take care of yourself, ignore nothing.  Good luck and hopefully your experience will be better than my sister's.

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    • Posted

      Hi Diane.

      That sounds just awful and my heart goes out to your sister. I've read everyone is different and regretfully major operations down the line is a reality for some. I'm in my late 30's like your sister so yes concerning and I promise you that I won't ignore anything.

      I've already been making certain adjustments towards a new career since the cancer. And I'm not sure if I can continue. Although the other to comments from Marion and Susan gives some comfort.

      All the best

      Andy

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  • Posted

    Hi Andrew

    I am also of the same as others on this site. I have replied to other posts. (Susan will remember me I think). I also have Mixed Connective Tissue Disease, one which is Lupus. I won't insult you by telling you life goes back to normal....but I was ill for about 10 years and it took me a long time to get diagnosed...GP's know very very little about this illness and rely on patients to educate them. I am told my Lupus is mild/moderate - ask me on a bad day if I feel mild/moderate...ha ha!! However, I work full time, have a family - but, and this is a big BUT, everything has to be in moderation. I had to give up all the exercise I so enjoyed. Since being diagnosed I take Hydroxychloroquine, which has helped with the tiredness. However you need to be kind to yourself. I never was a person to say NO to people but now I have to listen to my body and rest. Sleep was a major issue but now like Susan I take Amitriptyline which has helped and I can obtain restful sleep for about 5 hours a night. There are days, however, when I drag my sorry backside into work. It is hard to concentrate - I have a job where attention to detail is required and I find I am having to check and re-check! International travel is part of my job and I have to book holidays frequently so that I can recover. You need to push for your appointment - don't let them fob you off!!!!

    I am a very positive person - keep your spirits up!!

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    • Posted

      Dear Jean, thank you for being honest. 

      I feel my GP has been fantastic and that its the red tape which is causing the problems.  in a way I am fortunate to have recently had cancer as extra checks were carried out and proved inflammation, lung and lymph node issues amongst a few other things. 

      To me its a change set up.  2 GP's suspecting Lupus plus an Oncology team who wrote a letter to my GP practice dirctor about the condition and I still have to wait.   

      Sods law that only a Rheumatologist can give the final diagnosis and the waiting list both NHS and private is huge. 

      Yes I also found the benefit of cutting out exercise. When this all flared I carried on and my body fought back.  In the end all I could manage was a slow walk every other day of 2-3 miles.  not a lot but enough to at least keep moving.  it wasnt until I decided to knock that on the head as well that the pain and mobility started to improve.  Took about 2 weeks to notice the difference and now I feel as though I've hit a plato.  Not getting any better but not getting any worst. 

      Having had cancer I faced the plato before and made life adjustments to accomodate.  This plato is a new level which does restrict me from doing a great deal. 

      Your comment and as well as Susan and Marion has filled me with some hope.  and if I am to list my biggest three issues right now it would be:

      Fatigue

      Joint and muscle pain

      Memory issues. 

      from the posts and the comments here it looks as though  Hydroxychloroquine will help with these issues and that is the light at the end of the tunnel I was hoping for. 

      Thank you all. 

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    • Posted

      Hi, Jean,

      Yes I do remember you. Your advice and support was extremely helpful, especially when I finally saw a Rheumatologist, so, many thanks!

      Best wishes.

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  • Posted

    Thank you all for your comments so far. 

    These are the stories and lights at the end of the tunnel that I've been looking for and it would appear that there's something which can help. I understand that it's not a cure and that I may/ likely face many episodes but knowledge and knowing is power. as they say.

    All that is needed now is that pesky appintment. 

    Many thanks and I wish you all good health

    Andy

     

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    • Posted

      Hi, Andrew,

      One other thing to mention - make sure that your family and colleagues are fully aware of how you feel. For the longest time I hid just how awful I was feeling from my family and my colleagues, and I plodded on. I had a lot of problems focussing and with the pain I was getting I began to get a reputation of being 'a female dog' (I doubt the moderator will allow the correct word!!), one of my colleagues found it very difficult to work with me. In the end I had to take her to one side and explain everything, once she understood and I had apologised, and informed everyone I work with, I discovered that I had a great deal more support than I thought. And I am enormously grateful for it. I have noticed that I am allocated the lighter workloads and it has made a big difference. Although the grafter in me can't sit back and see my colleagues suffer through being overwhelmed so I do pitch in with their patients!

      As for my family, well, my husband has been understanding and more often than not he will sleep in another room to try and negate the noise from his snoring, which may seem a trifle in the great scheme of things but is actually a godsend. He and our son do a lot more around the house too. Make use of the family and you will notice that your energy levels will increase, slightly maybe, but any increase is better than none!

      Best wishes.

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    • Posted

      Hi Susan that's great advice

      I work alone running my own business so it's impossible to deligate. But that being said I've already sought the help of neighbouring businesses who have been able to help.

      As for family I've really kept the how I'm feeling pain issues to myself. They are aware and very supportive but like you its hard to sit back n do nothing. Had to learn how not to build Rome in a day but these days I'm happy with a tent. Lol.

      It's advice worth following

      All the best xXx

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