Finally diagnosed: After being in pain for over a year... - NRAS

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Finally diagnosed

annaslyric profile image
12 Replies

After being in pain for over a year I have finally had a diagnosis I have nodal osteoarthritus, maybe now the people at my work place will finally believe that I am ill legitamately as they have questioned both me and my doctors and made me go to occupational health even though I was in agony, they have made my life hell since I was signed off sick and never once asked if i needed anything, they have just repeatedly questioned my being ill as if I was faking it, its good to know that it was not in my head it is real and hopefully now the doctors have doubled my joint arthritus and put me on steroids.

speak soon x

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annaslyric profile image
annaslyric
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Nickijk73 profile image
Nickijk73

Fingers crossed things move forward in a far more positive way for you now that you finally have an actual diagnosis - it's amazing how quick things seem to happen once that final piece of that particular puzzle falls into place. As for work,I've been there and it's awful,there's a lady on here that's been posting in the past week who's just been diagnosed and she works for HR,by listening to her,her company are one of the rarer ones that do actually look out for their staff,I'm sure she wouldn't mind if you picked her brains for a question or two re work,as she says herself,now that she's been diagnosed,she can fully understand how the condition affects people,and what should be the protocol for helping them. Maybe give her a message and just ask so you have some help from that side so that you don't feel quite as helpless against your company as I used to with mine?!

Here's wishing that your condition settled quickly. Take care

Nicki x

annaslyric profile image
annaslyric in reply to Nickijk73

Thank you so much for kind words Nicki xx

Nickijk73 profile image
Nickijk73 in reply to annaslyric

No problem - I know how frightening,absolutely draining and feeling alone can leave you feeling bewildered after such a life changing diagnosis - life does go on,just sometimes in a different way to how you prob imagined,and it truly does make all the difference knowing that you're not alone when going through this - you'll find a lot of very sincere and extremely helpful people on here,ready to advise as no one else can,as they're the ones that have been living with the conditions for years,so really do know the ins and outs of pretty much everything. It's a great tool to have in your army as it were,never be afraid to use iteven if it's just to rant after having a rubbish day,we've all been there,still going through it in some cases,and even when we sometimes feel that we can't moan to family because they may be bored of hearing us go on(it does happen at times) there will usually always be someone around here to listen and help,or even just lend a shoulder. The NRAS also have some fantastic leafletscyou can download which helped me at times. Like I said,never be afraid to use this site,no matter how small you feel the issue may be x

foxyroxyv profile image
foxyroxyv

Bless you I am in a similar boat to you I have just written a post about my situation.i never had any support or visits from my work mates either and it does really hurt. I'm glad u have finally got an answer and I know how much it means to get one believe me. I wish you all the best and try to keep your chin up x🙂

annaslyric profile image
annaslyric in reply to foxyroxyv

Thank you so much for replying, I have not spoken or seen anybody from my work place since September last year, I feel really alone and this site is wonderful to have such lovely people replying and listening. It does say a lot about your company when they make you feel like nothing, and when I think back the amount of hours I used to do for nothing for them I really put my heart and soul into my job and in return I have had nothing but emails and some of my emails they have not even been replied to, the word rude springs to mind, I am still signed off sick and feel that my work place do not believe me, they have not even stopped to realise the impact that this illness has been on both my children and my life. But I will listen to you and definately will keep my chin up, thanks again for your kind words xx

foxyroxyv profile image
foxyroxyv

Bless you I know exactly how you feel .I too am isolated being off and workmates rarely speak even on Facebook I have couple of friends but they seem to run off into the sunset when they meet a new man lol. I have 2 teenagers who I hardly see and a fiancé who lives 50 miles away so it is very lonely for me too at times.it is very hard dealing with unseen illnesses as some people do not believe you especially your doctor until u start requesting investigations and into why you're suffering they make excuses just to save money and in some cases it is already on your file but they choose not to tell you.again that is to save money which is wrong to let someone suffer for that reason x

Nickijk73 profile image
Nickijk73 in reply to foxyroxyv

I know exactly how you feel about being isolated - these diseases truly show you who your true friends and support group are(family included). I used to speak to a very close member of family daily,went away with them on holidays numerous times,basically were never apart,and I even treated her daughters as if they were mine (I have no children through choice,just wonderful nephews and fantastic younger cousins) but ever since I've been on this roundabout,I've only seen them once in two years,and haven't heard a word in almost a year!! Same as my fairly large group of friends who only live 10 mins away(we were even closer after one was murdered almost 6 yrs ago) but since I've been diagnosed,and for almost 18months housebound due to bad flares whilst they were trying to get the right meds for me,I've not seen anyone,or even a text/phone call !!! It drives you insane to think of how we would react if the shoe was on the other foot,as I've always been brought up to treat people how I'd expect to be treated. Even after 3 back ops whilst working for the same company,and then being hit with this wonderful new life,I didn't hear a peep from any of them to see how I was, including the one person that I once put my job on the line for..... like I said,it really sorts the wheat from the chafe! It's a hard lesson to learn,but an important one,as it just shows that the one person you need to concentrate on is you. I've since found a few new friends from doing other things(websites,new neighbour,just random things) and they've proved far more caring than any of my supposed friends or family - it just seems like as soon as you can no longer be designated driver,or do other favours that they used to take for granted,it's just like you don't exist?! You won't feel alone for long after being on here,and once you get the right treatment and start getting out and about again,you'll find new friends through different activities that you may never have dreamt of doing before - as someone on here said to me once,don't give up on people,just the ones that don't deserve your time and energy.

Hope this has made you feel slightly better,I've only been on this site for a few months,yet I'm speaking to people like I've known them a lifetime,because you find you have shared interests(other than these diseases) and your days will be brighter again soon.

Take care of yourself in the meantime

Nicki x

foxyroxyv profile image
foxyroxyv in reply to Nickijk73

Omg you really have been thru the mill I'm so sorry to hear ur story Hun and yes you really do find out the deserters in time of need.most of my family have been struck down with similar and worse ailments and we have all gone down the isolation Rd .I have never thought to come on and chat as I had forgotten I had joined and so many things have gone through my mind since.but now I will try to come on abit more and draw strength and support from the lovely ppl on here like yourself .U take care of yourself and I hope you are not too bad today x Val

Nickijk73 profile image
Nickijk73 in reply to foxyroxyv

Thanks for your kind words Val - luckily,apart from still recovering from a flare brought on by someone rear ending my car only 2 wks into finally getting the right drug regime working for me,I'm seeing the light at the end of the tunnel for the first time in a long time. Yes I've had setbacks,but as we all do,we get through them somehow,and just move on - hopefully onwards and upwards😊 Luckily I treated myself to reserving a little Maltese puppy just before my accident,so instead of acting like my cats all day long,and sleeping for the best part of the day,I now have something new and positive to focus on. She's only just 19wks old,so is keeping us on our toes,but the reason I decided after months of debating the issue,is that it gives me something to do during the day,and an excuse to get out of the house - ok at the minute it's only very short walks,but I get to go to puppy classes,and it's a way of finally getting some gentle exercise back into my life - I've never been a sedate person,but more of a gym bunny,so being housebound for so long literally made the issues worse for me tenfold!! But like I said earlier,even though I'm still suffering with a flare that varies from week to week as to how it'll affect me(I fell unconscious at a black sabbath gig a few weeks back,and we were practically on the stage with them😂) I don't dwell on what I can't do,but concentrate on what I can - it took me ages(and visits to a psychiatrist when first diagnosed) to get my head around the fact it's my body's way of preventing further damage,rather than me being lazy,so even if it takes me longer to get up,I still do ,and even if it's just sitting in garden with pup instead of a short walk,I'm still getting fresh air and out of the house at last 😊

And yes,I used to come on here quite a bit,it took me a while to pluck up the courage and do my first post,but I'm so glad I did - even if it's just to check on how people are getting on,and wether a certain idea has worked out for them or not,or even just to chat rubbish and pass the time of day with people about normal things like gigs/festivals or pets,whatever the issue,I always come away smiling,and I've even managed to help people with telling them things I didn't even know that I knew about treatments or other stuff,and that makes you feel fantastic,knowing that just maybe you've managed to help one other person😀

Here's to a great weekend for all,fingers crossed/buckled😝 That the weather doesn't get as bad as they keep threatening us with.

Night x

foxyroxyv profile image
foxyroxyv in reply to Nickijk73

Thanks for your reply people have been so kind on here giving advice I could not find elsewhere from professionals or waiting on the phone for ages for people you think can help with your situation.i really appreciate it all.i am so sorry to hear that you have had 3 back ops too wow you really have suffered.and as for blacking out at a gig 😲 so sorry just hope u didn't suffer too much.and u have a puppy now good for you I wish I wasn't allergic or I would get one too to help get me out and get a bit of exercise x I hope u have a great weekend to and don't forget to relax as well x

Nickijk73 profile image
Nickijk73 in reply to foxyroxyv

Thanks,the back ops were a breeze,I was back in work on reduced hours after just 4 wks after the last one,and it's just the diagnosis of PsA that's left me so unfit,but like I said,moving on finally,so fingers crossed I can start building up my core strength again. Luckily Maltese are one of the breeds that have hair instead of fur,as they're meant to be suitable for allergy sufferers,and there are other small breeds out there too that are similar,but it also means as she has no undercoat that she can't tolerate extreme temperatures - she's got more coats than my other half,as he keeps telling me because she really does feel the cold... the latest one has so much technology in it that it looks like a wetsuit on her,and also means you can see how tiny she actually is,instead of just being a bundle of fluff....., but st least it means she keeps warm and doesn't get a chill. As for blacking out at the gig,it was only me dropping my water down my front that woke me up.... you just have to see the funny side in it now.... I'm more annoyed that my other half was so engrossed in the gig he didn't notice me, which meant I missed half😜 I'm planning on doing nothing this weekend but resting up and making the most of him being here to help out with the housework 😊

But yep,there's been plenty of times when I've spent ages trying to find answers to something,and get nowhere,but within hours of posting your question on here you'll have an answer,it's great.

Have a restful weekend too

Nicki x

margarete-72 profile image
margarete-72

hi iv had ostio arthritus for yrs iv just been told I have fibromyalgia. people can be so unkind xx

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