Scared alone and confused

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SharonDerby
SharonDerby Member Posts: 12
edited 5. Mar 2015, 07:46 in Living with Arthritis archive
Hi all
i posted yesterday on the Hello page my whole story but things have changed since then and id like to talk and seek advice from anyone and everyone because i feel so frightened and alone :(

I had an apt 2 weeks ago with Rhumy who wanted me to restart Methotrexate (had to stop it last year due to breast cancer).
He had sent me for a chest x ray and bloods and i waited for the results.
Got a call yesterday saying Rhumy has looked at chest x ray and doesn't want me to restart methotrexate as my chest x ray shows singes of Fibrosis, obvs i googled that and im now in total fear. He is suggesting i start sulphasalazine (something he wanted to do 4 years ago and i refused simply because i have terrible anxiety and cant take pills for fear of them making me vomit, injections i can do no problem but not pills).

He is now sending me for a lung x ray and some breathing tests? what are they? i don't have a dry cough i do get out of breath easily but i was putting that down to the fact that im a long term smoker (shame) now im terrified that im going to become very ill and not be able to function, im only 51 i work part time despite the agony as i said in my post on the hello board HELL does exist and the weekend just gone was the straw that broke the camels back i can not continue this way.

Any advice would certainly help me as i feel lost and very alone......which my husband would be devastated if he read because hes a great support but he's as fit as a fiddle so i'm not sure he can comprehend how scared i am, I've had breast cancer and wasn't as afraid as i am right now :(

Sharon xx

Comments

  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    That's a tough one, Sharon, and, to be honest, I'm not sure how much help we can be. Some of the meds we auto-immuners take can, rarely, cause interstitial lung disease (Is that the same thing :? ) and methotrexate is one of them but most of us on meth get no problems on that score.

    Your rheumatologist has done the right thing by giving you the chest x-ray. I think, as far as your arthritis goes, you'll just have to bite the bullet and take the sulph or other tablets. Perhaps steroids will be offered but they're not a long-term solution. (And they normally come as pills.)

    As for the lungs – I know it's easier said than done (I gave up twice many years ago) but you have to stop smoking. That's the best thing you can do for yourself right now. Why not make an appointment with your GP to talk things over? (S)he's not an expert in either arthritis or lung problems but (s)he is better informed and knows you and your medical history better than we do. Please let us know how you get on.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    Hi Sharon,

    I`m sorry things are so tough for you at present. I had to come off MTX as it caused me respiratory problems, and I had a persistent cough for weeks at a time.

    The lung function tests are quite straightforward, and only last 30 mins at the most. What they are doing is measuring the efficiency of your lungs, by having you blow into various tubes, and a balloon-like thing, whose name I can`t remember.

    I sympathise with your fear of tablets, but don`t really know what to suggest in that respect.

    Good luck,

    Tezz x
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Just sending a hug. Mig
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Sharon
    This is the trouble with google, we would be told things and be non the wiser at one time so not worry the same..sorry I don't know much about fibrosis apart from the breathing exercises you have to do ,its good that your rheumy has picked up on it, I'm so glad you have a supportive husband...but we are here when you want to talk more, it will help you..good luck with the test and I hope all is well.
    Love
    Barbara
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    hi Sharron , lung function tests will only take a short amount of time , just breathing into a tube , as for sulfasalazine I have been on it since 1996 , I would not worry to much about taking it , they take a lot higher dose of the drug when treating inflammatory bowel disease

    you got every right to be scared but atleast your Consultant is doing all the test you need before starting any drugs
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    Hi hun. Please be careful when using Google. You can get yourself in a real mess.
    Sorry I can't give much advice. .

    X
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • SharonDerby
    SharonDerby Member Posts: 12
    edited 30. Nov -1, 00:00
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    Hello all
    Thanks so much for taking time to read and advise, much appreciated.

    I spent last night in agony and realised i truly can not continue trying to be brave and pretend im ok. My foot is burning red, swollen to twice its size and excruciatingly painful.

    I have spent the last 2/3 weeks walking with my right foot tilted to one side to avoid standing on the joint, last night the pain was so unbearable i sobbed till i couldn't cry any more and didn't sleep for one minuet i finally called in sick to work and am determined to sort this out.

    I went to the doctors (gp) this morning and she has signed me off work for 4 weeks that's the biggest relief as i couldn't stand 4 hours ev day again for love nor money, she has said to go and see her again in 4 weeks and she will be more than happy to sine me off for as long as is needed, she also gave me naproxin and codine to try until i start the sulphasalazine. I also have a walking stick now to use.

    I have rec my apt for CT chest and lung x ray today, its on a Sunday (mothers day ) :( and also a rhumy apt the same week to start the sulph, tbh i don't care now i'll try anything, i was offered the sulph 4 or 5 years ago, i wish id not been as bolshy and thought i didn't need it back then as id be a lot better now im sure.

    Anyway im hopefully going to get some relief from resting and the pain killers and ill take the rest in my stride.
    I asked doc about the fibrosis and she said its a very wide spectrum disease about 40% of R/A sufferers get it but it can cause no problems for some and others its quite bad, im hoping its going to be ok for me.

    Thanks again all
    im gonna have a good look at all the advice available here and keep myself as well as i can.

    Kindest regard
    Sharon
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    You've made some tough decisions there, Sharon. Well done! I hope the time off work helps.

    Have you been taught how to walk with the stick? If not, ask us as there's a right way and several wrong ones :roll:

    I hope using the stick will enable you NOT to walk on the side of your foot. I suspect we've all done it :oops: but it simply creates more problems elsewhere. Choose good, supportive shoes – lace-ups are best. A good quality trainer is fine.

    Good luck for Sunday :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Good for you Sharon take the bull by the horns..like SW says have you not tired a walking stick just to take the stress off that foot..I hated mine when first tried it but soon got used and that and my crutches are my best friends...sad I know..good luck with the lung test I will have everything crossed for you..
    Love
    Barbara
  • SharonDerby
    SharonDerby Member Posts: 12
    edited 30. Nov -1, 00:00
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    Morning SW and Barb

    Your right walking on side of foot has created more problems and walking with stick now is making my shoulders sore :x
    Its only a grey crutch type stick are there better ways than others to use it? i wouldn't know of anyway other than the basic way?

    Not being at work is a relief but i want to be able to go back after the 4 weeks hopefully, i did think not working was what i wanted but after a long think and chat with myself its not what i want, i want to stay at work and active as long as i can but not in pain....time will tell i guess.

    Look forward to chatting with you all
    Sharon x
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    Right. I've never actually been able to use a stick but here's how it should be done. Firstly, if it's at the correct height you should be able to stand upright with your elbow slightly bent ie around hip height. Hold the stick at the opposite side to your worst leg and bring it forward at the same time as your worst leg.

    If you try to use the stick for balance, rather than weight-bearing, it should put less strain on your shoulders but, if they're playing up already you might be better with elbow crutches or a rollator.

    'not in pain' :? Hm. Run that one past me again :lol: Seriously, I think working is good if you can do it in a way that keeps body and mind active without stressing the joints too much. You go for it :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    Best wishes and good luck using the stick. Hopefully that will ease the foot pain whilst walking. And stop you from getting into a bad habit of walking on the side of your foot. :wink:

    As said, it's best to use it for balance if possible.
    Hope that things ease soon. Good luck with the sulphasalazine too.. I've been on them a while now along with methotrexate injections.
    Xx
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP