1am gibberish!

It's just gone 1am and as I can't sleep I am on the internet scaring myself stupid.

Ok I can do 'RA denial' with the best of them, because I still haven't been officially diagnosed I can tell myself "it's fine , it'll turn out to be nothing and then won't you look the silly fool JoJo" but increasingly the signs are there and I'm running out of rational excuses for them.

Although I tell people I have undiagnosed RA, my GP has signed me off from work for the last 9 months with it, my father had it and at least 3 of his siblings have it, I still have this little voice in my head saying "Yeah but YOU haven't got it JoJo, not really, this is all just coincidence"

But tonight, the more I look at it the more I can see it, the little finger on my right hand is clearly not talking to the other fingers any more and has started to head off on it's own adventure. I can force it to lie next to the other finger but as soon as I stop concentrating, it drifts off again, doing a Greta Garbo "I vant to be alone !' Also my other hand, the left one, has started doing a peculiar sideways spasm where the whole hand sort of bends at right angles all of a sudden (to a position I can't ordinarily get it in to) and I have to physically bend it back in place with the other hand.

To top my sleepless night off, my boss rang me today to 'invite' me into work next week for a chat/meeting about where I am with treatment and where I am likely to be in the future!!!! (Pass me my crystal ball...)

Sorry if this blog is a bit random and nonsensical but that's pretty much how I'm feeling right now. Completely random and very, very nonsensical !

JoJo Xxx

26 Replies

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  • Oh jojo I had a bad night too!, hands , neck and back!, Gps wouldnt lightly sign some one of for 9 months!!, My problem is when I went off I had work ringing saying when was I going back after a couple of weeks!!, think I HAD SIX WEEKS off, went back when not well enough!, Im still waiting for effective drug regime, my last drug stopped working!

    I am asssuming your are sero negative?, Rhuems find this harder to diagnose?.

    You arent helped by lack of consultant situation

  • I agree to all the things you both have said. You feel you are the only one it is good to be able to talk to others on here and see there are others like you. I llike summer went back to work to soon, please don't do it I felt worse, and am still waiting for an effective drug.

    Lets stay strong and maybe consultations will get easier to get and more often. I have seen my consultant twice in a year.

  • Hi Tich, no I won't go back before I'm ready but on days like today I wonder if I ever will! Certainly I think my boss is thinking along those lines as he mentioned that the sick pay scheme they run has the ability to pay out to age 65. I thought that was a strange thing to tell me, sounds to me like he's written me off, especially when he said the company needs to move forward. Who knows? Until I actually see him I won't know and even then I might not! He does like to use corporate speak and confuse the issue when plain English would be so much clearer!

    I know he can check with the hospital but I do feel like an idiot saying "well the rheumatologist has done a runner so I've no idea what happens now"

  • Hi Summer, Yes my GP is convinced I am sero negative. I had some blood tests done the other day but it was the same as the rest, raised inflammatory markers but Rheumatoid factor 'normal' . So, so frustrating. I got the impression from talking with my GP that if my RF was 'positive' she'd have more leeway with prescribing me certain drugs.

    My hands, neck and shoulders are killing me this morning so you have my absolute sympathy and admiration. I've often thought from reading your posts that your employers are pretty mean and non-compassionate to you. It's all about figures and quotas and deadlines with bosses isn't it? The human element just doesn't figure at all :-(

  • Hope you get the job situation sorted, think you need legal advice

  • JoJo it is a bit of a nightmare for you I agree. But its not the RA itself its the lack of acknowledgement or treatment. Won't you consider going private in Liverpool for a one off appointment to get a diagnosis and the go ahead for your GP to start you on the right treatment?

    Your boss has to understand that you are ill through no fault of your own and the situation you have been placed in by the Isle of Man health service. Maybe he or she would even offer to help out by paying for you to go private for a few sessions while your wait for a rheumy to come to the Isle of Man is sorted out? No wonder you are up at 1am scaring yourself but try not to - it won't help.

    You did make me smile about your little finger playing Greta Garbo though - mine has done that too and she's turned her face (nail) away from the others too. Strangely they are all turning to see where she's gone now? I look to see drifted fingers on the Internet but most, while far more dramatic than mine, don't seem to be facing away from their owners as mine do? It must be the sight of me?! Xx

  • Hi Tilda, I do think my boss knows this isn't of my doing but I also think he is looking at medically discharging or medically retiring me. He's a great one for 'cutting out the dead wood' which in this case I think means me!

    I would love to go across for a private diagnosis but I cannot afford the air fare let alone the consultation fee, I am struggling to keep my head above water financially as it is sadly.

    Plus it has been made quite clear to me that my employers

    Private medical care scheme "will only pay for new conditions and cannot be used as a short cut when existing care is not meeting expected or required targets." (More boss speak there I'm afraid!)

    It's Interesting what you say about your fingernail as I have thought that about one of my other fingers that the nail appears to have swivelled round a bit (as if away from me ) how bizarre. Glad the Greta Garbo quip made you smile, even when I'm scared I like to try and make a joke or two! Must be my warped sense of humour ;-)

    Xx

  • I do understand and relate to your reasons for not going private JoJo. But if your NHS doesn't have a rheumy currently then surely you could argue that paying for flights to send you to a rheumy elsewhere is a basic human right? This is all serving to make me feel rather anti independence I must say. If you were in England or Scotland there would be something you could do - or you would be paid for to go to the mainland to see a rheumy. I thought waiting 9 months to be diagnosed and then another 9 months for a follow up was fairly lousy and in breech of basic guidelines. Xx

  • ...But your situation is in a league of its own!

  • Hi Jojo, Your explanation of your hands and fingers really made me chuckle this morning, thankyou.

    I too am having the same argument with myself about this ra and to be honest I don't understand it at all.

    I go to rhumy app on tuesday next and just know that I will sit there and say that its not too bad! Denial............

    Take care

    happypeople

  • I know aren't we silly? Last week during RA awareness I bombarded my Facebook page with RA related news and articles, to the point where some people started private messaging me with their symptoms and asking my opinion. I thought Me? What do I know? Why are they asking me? So of course I reassured where necessary but told each and everyone to get checked out with their GP. Amazing how many people have symptoms that they just ignore, thinking they'll go away. I'm one of them!

    Checked on Greta Garbo this morning though and she is definitely moving out to a new postcode! Another symptom to accept and report I guess instead of ignore!

    Xx

  • Hi JoJo think i would have to agree with others here, your boss has to understand that it is not your fault that the NHS can't sort out a consultant for you!!!!

    You made me smile about your little fingers. Snap mine do the same........ xxx

  • Hi Miss

    I've had a terrible night wondering what my boss has planned but in the cold light of day I can think more rationally. The trouble is I hold quite an important position which has to be be both police checked and government approved (Isle of Man gov that is!) So I can understand that having somebody else in that position temporarily is neither ideal or complying with certain legislation. Oh I'll just have to wait to Tuesday to find out! Lol

    Hope Greta comes back soon but I think she's gone for good! :-(

    Xx

  • JoJo......it's an awful place to be in.....we have all had those nights.....there is a question there that you have raised about rheumatoid disease being genetic. I can remember my wee granny trying to get the big penny's (those over 60 will remember) out of her purse with her wee twisted gnarled fingers. I have a cousin who had to get both knees replaced...... I could go on but I think you get the picture. It is an interesting topic though that should be brought up on this site. Anyhow, back to you.....I suppose until you are officially diagnosed you are sort of in limbo.....not know ing what to say to your boss.....he will have to be made to understand the position you are in at present.....listen, things will all come together for you. It's just the nature of this disease, nothing happens quickly. I really hope you get the answers you need soon. All the best joJo. Jean. XX

  • Thank you Jean for your kind words :-)

    I do think genetics have a big part to play, certainly in my case. When I talk to various family members I find that certain great grandparents had deformed hands and legs so it certainly makes me wonder. I know my Dad had it, one of his sister's who had both hips replaced, and now I know another brother and another sister have it (my Dad was one of 17 children(!)so at least 4 to my knowledge have this!)

    I have never wanted a diagnosis so much in my life and that's a ridiculous thing to say but at least then I can have some proper treatment and start to plan the rest of my life!

    Xxx

  • Oh dear. I've just heard from a friend and a colleague, she's been off work 11months now with cancer and she's also been called into work next week for a meeting. I don't think this bodes well...she can't help her illness anymore than I can. I feel sick now. Oh this is going to be a long few days until Tuesday.... :-0

  • With all the problems you've had just getting to see a rheumy I'm not surprised that you're feeling rather unhinged. But it will happen one day, and you will get diagnosed, and you will get treatment and then things will get better. So try not to scare yourself with other stuff on the Internet. Maybe search for how to complain about rubbish rheumy service instead? Polly

  • Thanks Polly I know you're right I just seem to be in panic mode right now. Deep breaths JoJo, deeeeeep breaths!

    Xxx

  • Write it all down JoJo and keep it clear so you can take a sheet of straightforward points to this meeting with you. The main point you need to make is that if you had been seen and diagnosed by now - as you surely should have - then you would be on treatment and probably be fine to be back at work. It's not just the disease in your case but it's the situation you've been placed in that is so totally impossible for you. Tilda x

  • If you have yet to be diagnosed by a consultant, surely that is still a NEW condition, not "Private medical care scheme "will only pay for new conditions and cannot be used as a short cut when existing care is not meeting expected or required targets."

    I think you should argue to your boss that if the company will pay for a private consultation, you will be able to start on treatment and be able to return to work. And the sooner you are seen, the sooner you will be back at work. This would save them Loads of Money, as they already have a trained and experienced person to do the job and don't need to look for another! i.e. sell yourself!

  • The problem is I was referred privately through the company scheme in September but then it turned out that the Rheumy here on Isle of Man was no longer one of their 'approved' consultants. After that I saw several locums and finally in April I saw the original Rheumy again. He was full of apologies and promises and then last week when I was due to see him again the hospital rang me 3 HOURS before my appointment to tell me the cinsultant had left his position suddenly and without notice that morning. Anyway as far as the insurers are concerned I have been seen by several consultants now for this condition and therefore in their eyes it is an existing condition not a new one. Believe me, I've tried!

    xx

  • Hi. I can't believe how much your story sounds like mine, except for the not being referred to a consultant, I have been referred. My father, older sister, & a brother have all been diagnosed with sero-negative RA. I have actually been referred to a consultant 3 times, the first time he diagnosed fibromyalgia & osteo arthritis he sent me away with tramadol & a few leaflets etc. The second visit I was referred by my GP because I had Psoriasis so he thought it was PsA but the consultant still said he thought it was FM & Osteo. The third time (this is all over 14 years) a different GP sent me for an xray because I had a lump on my wrist. The result came back that the lump was showing inflammation & corrosion of the bone underneath & he said I should be referred to a rheumatologist. Well I went back for the 3rd time, took someone with me, we went into his office & he said "why are you back, I haven't changed my mind on your diagnosis". Well we were both too stunned to speak, when I recovered I said "I am back because I was referred re a lump + inflammation on my wrist, the radiologist's report advised this". He then said, "oh he can't diagnose you" all in a very off hand manner. Anyway I left again with a bigger dose of tramadol & the promise that he would send a letter to GP & say that I could have a steroid injection. I have used this very useful site for a while now, (everyone is so helpful) & keep seeing symptoms that match mine ie, little finger drift, inflammation & lumps on wrists which get very hot, eye problems (blepheritis), jaw problems, hand & shoulder pain, ankle & toe pain, & knee pain. One thing that should give the rheumatologist a clue is that I take 2400mg of Brufen Retard & have a steroid injection (when they let me, can't have more than three a year).These work very well for me, I feel better, especially after a big steroid injection. These drugs don't work on fibro or OA, which means I do have inflammation but he just doesn't want to know. I know just how you are feeling when you say how much you want a diagnosis & treatment. You start to wonder if your going out of your mind, but I know lots of other people do have the same problem with RA & finally being diagnosed. All we want is to prevent this disabling disease from ruining our lives. I said to the rheumy "I saw my father totally crippled with this disease, it was awful & I don't want to end up like this (this was a long, long time ago. Nowadays the treatment is soo much better that if you get treated soon enough that kind of damage shouldn't happen. I am not sure but some things that are already starting like the finger drift etc can be reversed with the meds, I'm sure I've read this somewhere. I wish you all the best. I really hope you get somewhere soon. Franbie x

  • Thanks Franbie

    I have been referred and have seen several consultants but due to the complete disarray the local hospital is now in and the fact there is no consultant in rheumatology now everything is on hold. The Isle of Man govt. are making cutbacks everywhere and the poor service of the hospital is currently under investigation. I don't know what will happen next and everytime you ring up you speak to someone different each time and none of them know what is happening with rheumatology. It's farcical.

    Xx

  • Hi JoJo. I am reading your story & can't believe how much it sounds like mine, except I have been referred to consultant (more below). I have the little finger drift. What you say about your left hand bending to the right, I have that, mine's being caused by a lump on my wrist just down a bit from my thumb, it's twisting my hand to the right. Have you got a lump there? I went to ortho department a week ago & they have given me a hand, wrist & thumb splint which should stop my hand from twisting & hopefully make the lump go down. I last went to an RA consultant a couple of months ago. I took someone with me, we were called into his office & he said "why are you back again" we were both stunned but when I finally recovered I said "I had been referred again because of a lump on my wrist & on recommendation of the radiologist". I'd seen him twice before but I don't think he should have been quite so rude. The 1st time I saw him he diagnosed me with fibromyalgia & Osteo-arthritis, he gave me tramadol. The second time I saw him I was referred by my GP because I had psoriasis on my feet & was in a lot of pain. He gave me more painkillers & said it's not PsA.The one thing that should have given the rheumy a clue is that I take 2400mg of Brufen Retard & have steroid injections (when they let me, I am allowed 3 a year) & these work well for me especially the steroid injection. These meds don't work on fibro or osteo, they work on inflammation. I have eye problems (blepheritis), jaw problems, shoulder pain, ankle & foot pain, hip pain, knee pain & swelling. Hands that just don't want to work at times, hot wrists, sore throats & morning stiffness.I said can you just try me on the meds for a few months just to see. There answer to that is the side effects are bad & they would rather not risk it. I say if it takes a few years off my life but would give me a better quality of life then I want the meds! They still won't try it out on me. My father, sister & brother have all been diagnosed with sere-negative RA. I tried to explain to the rheumy that I had seen my father becoming more & more crippled with RA (this was a long, long time ago, the meds are much better now) & just wanted to avoid the same. I know what you mean about wanting a diagnosis, you want someone to give you answers & treatment that will help. It's not that we want to have RA, we just want answers. I hope you get to the consultant soon & start to get the meds you need. Good luck. Franbie x

  • Thanks Franbie, you're absolutely right, I don't want RA but I do want answers and I do want to have some control back in my life because I don't feel that I have any right now.

    I'm not aware of any lump beneath my thumb or on my wrist and my hand doesn't bend the whole time it's just now and again it spasms all of its own accord. Very painful and I can't make it go straight again without physically straightening it with the other hand. I have been wearing a wrist splint the last couple of days to counteract it but not sure if that's the right thing to do.

    I was on oral steroids (Prednisolone) until Monday but I've had to come off them now to be clear for my scan in a couple of weeks. I'm really suffering for it now , fingers, wrists, shoulders, Neck, spine, knees, ankles and toes hurting so bad and now my hips are starting to join in too. What a wreck! Lol

    JoJo xx

  • Hi JoJo. It is horrible isn't it you don't know where the next pain is going to come from. Good luck with the scan. I will keep an eye out to see how your doing. Franbie x

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