Hello from me

Hello my name is Jo and I have been 'lurking' around here for a little while now, reading the posts daily and feeling relieved that I have found a place where everyone understands. I tried to do a post before Christmas but my laptop decided to refresh the page or something and I lost everything I'd written. Silly as it sounds I burst into tears, I just didn't have the strength mentally, or in my fingers, to start again. But anyway here goes again..

You seem like a really friendly bunch and I have learnt so much more about my condition here than any doctor has told me. I've had aches and pains in my fingers and wrists for about two years now but in October last year, it suddenly started to get unbearable. I found myself leaving my desk more and more to just go and run my hands under the hot tap for some relief from the incredible pain and stiffness. On the 29th October I couldn't get comfortable at all, I had a severe pain and numbness at the base of my spine and my hands just would not free up. At lunchtime I threw in the towel and decided to go home. I had to sit in the car for about 15 minutes with the heater on full blast holding my hands in the warmish air to free them up enough to be able to drive home.

I drove home in pain like I never knew before with tears streaming down my face. I haven't been back to work since.

I am desperate for some sort of treatment to start so that I can return to work but I keep seeing locums at the local hospital and each one sends me for new tests but when I go back for the results, lo and behold, there's another locum with another diagnosis and another set of tests...it's very depressing and my GP has written in exasperation to the Rheumatology department asking on my behalf for some form of continuity of care, a proper diagnosis and treatment to start. She was convinced that at my last appointment with Rheumatology (just after Christmas) they would start me on some form of DMARDs and was incredulous when I saw another locum with another idea of what I may have.

My Dad, his sister and brother all had/have Rheumatoid Arthritis and my Dad actually died of lung complications connected with it when he was just 8 years older than I am now (I'm 48) so I'm maybe making mountains out of mole hills but I'd be lying if I said I wasn't frightened of the same thing happening to me.

Sorry if I've drivelled on I only meant to stop by and say 'hello'!

44 Replies

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  • A big welcome to you Jo. Sorry to hear that things are so tricky at the moment but your story makes interesting reading. I would say 'push for a Rheumatology appointment ASAP' but your sounds as if your GP is very definitely on your side & on the case. It would be interesting too to hear what your test results have shown, especially Rheumatoid Factor, Anti-CCP, ANA and the ones for inflammation: ESR and CRP. I know this isn't the place for unofficial diagnosis but lots of people here know enough to comment on such things at least. However, with the family history of RA you probably know all about these things already.

    And you probably do not need me to tell you that if it is RA then it is very likely to be well-controlled before too long & is far less likely to lead to serious complications than it was in previous decades. But it is very easy to understand why you feel scared & desperate for treatment. Whether you have RA or not awaiting diagnosis is a really confusing & difficult time for most people but hopefully the picture will be much clearer soon.

    Luce xx

  • Jo welcome,i am sorry that you have joined us as it means you have a serious illness. We are a friendly bunch of people on here. What treatment has your dr given as he would have given you something while your waiting for the hospital to get their arse moving(sorry about that) it seems to me that they are dragging their heels with you. I hope it won't be too long before they get you sorted and on some treatment. If you find you get no satisfaction go to the p.a.l.s at your hospital..

    Sylvia.xxx

  • Thanks Luce and Sylvi :-) As far as I know my Rheumatoid Factor is still showing negative but my inflammatory markers are still raised and have consistently been so for over a year now. I live in the Isle of Man and whilst we do have the NHS here it's different to the NHS in the UK. (Patient charters etc. don't exist here)

    We have just one hospital and whilst I saw the 'proper' consultant the first time, back in September, I've just seen locums flown over from the UK since. The first locum I saw was very dismissive of both the island and the NHS and gave me an injection before I could say boo! The next thing I knew I was outside the clinic totally bewildered wondering what on earth I'd just been injected with and why I hadn't been more forceful in my questions. It sounds ridiculous now but I felt like a sheep grabbed by the scruff of the neck, flung in the sheep dip and sent on my way. It was only when I got a copy of correspondence sent to my GP that I discovered I had been injected with Kenalog 80. Thank heavens for Google I wouldn't have know what that was otherwise, I get told nothing here, I always go armed with questions but they are always too busy and rushed to pay attention to me or so it seems.

    I'm living off ibuprofen and co-codamol from my GP. I even had to self refer myself to Occupational Therapy and they've been brilliant with things like a kettle tipper and dressing aids but Rheumatology told me nothing about this. It's very frustrating.

    Sorry for appearing dim but what or who are p.a.l.s?

  • Welcome Jo, sorry you have had to join us, but pleased to welcome you and am sorry to hear you are having so much trouble and in pain, I hope you can get something sorted soon.

    Wendy xx

  • Thanks Wendy x

  • Hi jo welcome sorry you are not to good at the moment as Sylvia said push for rummy appointment so you can get some help its a great place to get answers you need

    Hope you get sorted soon

    Love Karen x

  • Thank you Karen x

  • I ment this site x

  • hello there. It makes me boil with anger when people get messed around like you are, but at least it sounds as if your GP is being helpful. A lot of us have found that you have to develop a really assertive streak to get properly treated with RA, as the rheumy teams are so busy that they never seem to have time unless you practically chain yourself to their desks. Is there someone or could take with you to the next appointment? Sometimes having someone else there makes the docs pay a bit more attention. And the hospital you go to should have a PALS (patient advice and liaison service) or something similar at you can contact to complain that you are being fobbed off.

    Anyway, it does sound as if you've got one of the inflammatory arthritis, so keep persisting to get a proper diagnosis. But really the treatment now (once you finally get it!) does make a huge difference and reduces the likelihood of ending up like your dad, so please don't worry about that right now as you've enough to cope with. Do you know whether you are negative for the anti-CCP test as well as RF (rheumatoid factor), as that's more sensitive. But either way it really doesn't matter as you can be negative for both and still have RA. Anyway, I really hope your GP's letter works, but do keep hassling the GP too and don't feel guilty about it as your health is more important.

    Another thought is whether your GP is able to refer you to somewhere else off the island if you aren't getting treated right? good luck. Polly

  • Thanks Polly I might try and get someone to come with me to my next appointment in April. I think that is a good idea :-)

  • Hi Jo, a big welcome from me too. Oh dear I'm sorry to hear about your lack of proper treatment so far. No doubt you have read here that it is really important to get treatment started as soon as possible.

    I have seronegative RA, there is also seropositive RA. Seropositive means that a simple blood test can sometimes reveal a positive sign of RA. From what I have read, this test is often not used by Rheumatologists because it is not always reliable. So, a lot of people are seronegative like me. I'm really surprised they haven't taken the fact that your dad had RA more seriously especially as you do have raised ESR showing inflamation. It sounds like no one wants to take responsibility for your diagnosis, passing the buck, that's what it sounds like to me.

    Obviously your biggest hurdle to jump is the fact that you live on the Isle of Man with it's different system to mainland NHS. Have you thought about phoning the NRAS helpline. They have a lot of information at their fingertips and may come up with a helpfull suggestion.

    Tel no: 0800-2987650, they are open Mon-Fri 9.30 -4.30. Good luck and I hope you are soon diagnosed and started on meds. June xx

  • Thank you I have thought about ringing the helpline but I worried that the advice maybe UK specific but I guess I won't know until I give it a try!

  • Hello Jo - welcome - glad you have found us to share your story with and braved another try at a blog. Sorry you are having such a bad time with pain and are in untreated limbo land still though.

    I can relate to your experience because I live on Orkney off the north of Scotland and we only get visiting rheumatologists every few months and the clinics are full to capacity and beyond always. But at least these doctors are specialists in their field whereas locums may have no idea at all about what they are dealing with so you do need to see a consultant rheumatologist who can put all the pieces in your jigsaw together, including your family history of RA, and make a diagnosis hopefully.

    The window isn't huge before damage is done if you do have inflammatory arthritis so you may have to push very hard and absolutely put your foot down about anymore sheep treatment! Did the Kenalog injection make a noticeable difference to your symptoms or not?

    It seems so odd that they aren't taking you seriously and keep passing you from pillar to post but as others have said it's really good that your GP is supporting you at least. Mine was exactly the same and it does make a huge difference having a good GP with any chronic condition. Does the Isle of Man have a relationship with one of the big NHS hospitals in Liverpool or somewhere? I just don't know enough about your set up I'm afraid but our health board here is partnered with Grampian/ Aberdeen Royal Infirmary - but then of course we are part of the UK/ Scottish NHS. Stay on here and tell us how you get on as things unfold. Tilda

  • Hi Tilda . Yes living on an island maybe great in lots of ways but its not so great when you need specialist medical treatment. The Kenalog injection did help for a while but the pains are getting quite bad again and my feet are being affected too now. The last locum I saw said both my arches have fallen now which I guess explains why I feel like I'm walking on pebbles all the time.

  • I find it hard to credit that a doctor observed the changes that were taking place and yet they didn't ensure you were seen and diagnosed properly Jo? If the Kenalog injection made a difference to you then that very likely means that whatever is going on for you is inflammatory by nature so its a diagnostic tool in itself. I hope you get seen by a consultant rheumatologist very soon - please push very hard for this to happen. Tilda x

  • Hello Jo

    What a grim time you're having. I hope your GP has some luck in getting you some proper treatment.

    This is a link to the NICE guidelines for how RA should be treated and managed - might give you some more ammunition. nice.org.uk/nicemedia/pdf/C...

    Good luck

    Dotty xx

  • Hello Dotty thanks for the link that will be very useful I think.

    After everything I have read about treatment being needed to start within the first 3 months I am still slightly gobsmacked for want of a better word at the apparent lack of urgency here. I know they have hundreds of patients but I only have one choice of hospital and I just want to be able to go back to work. I haven't got another half to help pay the bills and mortgage so I need to work.

  • Oh what a lovely welcome from everyone thank you so much. I've whinged about my 'predicament' to my friends on Facebook but I think I've worn their patience too thin now so it is very comforting to receive so many positive replies.

    Because we have our own government and taxation etc. we will only ever get sent 'across' if our hospital doesn't have the equipment or department to deal with a particular condition/disease/operation etc.

    In fact when my condition started to get bad at the end of the summer, I checked with the private healthcare scheme that my employers paid into and was told that yes investigation for inflammatory arthritis was covered, they just needed to know the name of the consultant. I found out the consultant's name only to be then told that his name had dropped off their 'approved consultants' list a couple of years ago so they wouldn't cover me to see him. They then suggested I choose a consultant in either Belfast or Manchester but that I would have to fund my own flights, accommodation etc. Which I just couldn't afford to do. So then they suggested I be seen by a different department such as Orthopaedics! My GP rolled her eyes at that one!

    I do waffle on a bit so if I'm blathering too much I do apologise, I just feel I've had so much pent up worry about this that now I've started talking I can't stop!

    Thank you so much for listening and for all your advice, I really do feel for the first time in months I am talking to people who understand.

    Jo xx

  • Sorry Jo - in my last memo I didn't realise you were on IoM........but why not see the Orthopaedic doctor ? I did and ended up having an operation to help with that terrible feeling in my feet and once you are in the system the Ortho might have a friend who is a Rheumy and they love helping out another doctor with a new patient!!! Kathy...........

  • Oh I didn't realise that. I suppose I thought Rheumatology were the only people who could help. That's what I love about this site so many helpful people and good advice. I'm so grateful for everyone's input, thank you Kathy! :-) x

  • Hey Jo,........ I love to hear you waffle on,,,,,, i have had R A for years and i know its good to TALK,..... SO JUST YOU WAFFLE AWAY we understand LOL x

  • Thanks for that Smartygirl much appreciated :-) x

  • We had a neighbour who was a consultant anaesthetist at our hospitals about ten years ago. He left after a few years for the hospital on the Isle of Man which he said was far better served with everything re healthcare. But it certainly sounds as if that only applies to the wealthier citizens!? If and when you finally get a disgnosis you are probably going to require ongoing treatment so perhaps you need to think hard about whether you can affford to live and work there in the long term? Tilda x

  • Yes I think ten years ago there was a brighter future over here medical wise. A brand new hospital was being built then which opened about 8 years ago and it was supposed to be state of the art, with the latest scanners, technology etc. But it did go over budget as these things tend to do and not everything promised was delivered. However, we do have an MRI scanner now whereas before we would have to go the UK so there are improvements but our little government is feeling the pinch like everyone else and cut backs are really digging deep now sadly.

    As for leaving here I have no idea where I'd go. My elderly mother is here, my brother and his family and my 3 sons and their girlfriends live here. They're all great support to me so if I left I'd be alone and I don't think I could cope with that.

  • Hello Jo, I'm shirley, i would just like to also welcome you to this wonderful site, I was diagnosed in July and joined this site in September, I have received great advice and positive messages from a lot of friends on here, Take Care Xx

  • Hello Shirley and thank you. Everyone has been so kind and welcoming and it is such a relief to talk to people who understand and can give advice based on their own experiences. I would love to sit down and talk with someone over here face to face about the condition

  • The way things are going, it might turn out to be money well spent on getting an initial diagnosis privately, then transferring back to the island doctors for ongoing treatment. I was the same as you, in terms of needing to work to pay mortgage etc, and I saw a private consultant originally because the wait time for and NHS appointment was so long. But I don't know what the travel costs are like for you.

    Dotty

  • Hi Dotty I understand what you're saying and it has crossed my mind more than once but it's very difficult when we are basically a separate nation with our own government. I guess the best way to describe it is it would be like you going to France or Germany for a private diagnosis and then trying to slip back into the NHS on a higher rung of the waiting list ladder based on that. We can be referred over to England but if we refer ourselves it makes things tricky to put it mildly.

  • Oops I hit 'send' too soon!

    I forgot to say that travel costs to get on and off the island are horrendous. Return flights are upward of £100 but usually around the the £250 - 300. The boat can be cheaper but not always and the Irish Sea is a very unforgiving place for people with seasickness like me. Three to four hours (sometimes longer if the weather is particularly bad) of pitching and tossing is never a great way to start your day :-(

  • I thought it might be expensive on that scale, because I guess there's not much competition to drive prices down. Other than that I had never really thought about how the Isle of Man worked in terms of its relation to the UK; in fact, I had never thought much about the Isle of Man at all, to be honest. I've learned something today, so thank you. :-)

    I hope today is an OK day for you, rheumatoid-wise, and that you get some answers soon. Thank heavens for having your GP on your side.

    Dotty xx

  • I'm appalled to hear of your treatment and had no idea how different things are there.do contact NRAS I've had great advice by email and they can find things out for you. I really hope you can get somewhere soon

  • Thanks Cathie I think I will give them a call today. I can't be the only person from the rock in the Irish Sea to contact them can I? :-)

  • Theyll be very helpful and supportive im sure

  • Hi - Welcome Jo and commiserations if you do have RA. I know this is very non pc, but have you thought of seeing a Rheumatologist Privately? This seems to be a surefire way of getting some action - even if he/she just gives you some meds to help for now, you may at least get some pain relief. I think we all at some time despair of the NHS,but once you get settled on a treatment regime things will get better. Good Luck, Kathy

  • Hi Jo, So sorry to hear what your going through. It took me a full year and as no RA showed in my blood results. Finally I had scans on my hands, wrists and then negative RA was diagnosed. This past year I have taken a friend with me to every appointment and she has been great. My lovely friend has breast cancer but she is still fighting my corner, writing to MP's etc. You know your own body and you have family history so take someone who can be firm on your behalf and I really hope you get sorted out soon. Take care and it will get better.. Uist51

  • I'm waiting on an ultrasound scan of my hands and feet now, there's a long waiting list apparently but I hope I will have it done before my next rheumy appointment in April :-) Oddly enough my best friend is currently having chemo for bowel cancer and she is an amazing, feisty woman, I love her energy and positivity, she puts me to shame!

  • Hi Jo,

    It took 8months for myself to be diagnosed due to not having the rheumatoid factor in my bloods but the only way I did get diagnosed was to go private. I then got the consultant to refer me to the NHS for treatment after my diagnosis.

    May be worth looking into as it's worth it.

    Jene xx

  • That's very encouraging Jene. Thanks for that xx

  • That's ok hope it may help xx

  • Hi Lilac Lion

    I'm afraid we do not have too much information about the governance of the NHS on the Isle of Man, but having done a little research I found this document that I thought may be helpful to you (please see link below). If you are not happy with your treatment under the rheumatology department so far it would be worth contacting the Patient Safety and Governance Manager at your hospital to see if they can help you resolve things. It looks to me as if this is perhaps the closest thing on IoM to the PALS department that we have here. The link below is to a patient's guide to the NHS Complaints Procedure for the Isle of Man: gov.im/lib/docs/health/nhsc...

    It can sometimes be difficult to get a firm diganosis as many types of inflammatory arthritis have overlapping symptoms but many of them are treated with the same DMARDs. Given your family history you would hope that they would be looking to take some action and get you started on some treatment. Sometimes DMARD therapy can be started before a firm diagnosis has been made.

    I hope you manage to get some answers soon. Welcome to HU!

    Kind regards

    Sarah Kate

    NRAS

  • Thank you SO much for this. I really do appreciate it :-)

    Yes I thought that given my family history there might be a little more urgency or belief even. I am so tired of having to justify myself to each new locum I see.

  • Hi Jo,

    Sorry its late but just saw your post.

    You are having a bad time of it and i really hope you get sorted out soon.

    This is a lovely forum and everyone here has been very helpful, supportive and friendly.

    Take care and keep us all posted on how you get on.

    Jo

    Xxxxxx

  • Thank you Jo! By the way I was called Josie right through my school years :-) xxx

  • Its my dad whose always called me Josie, real name Joanne but prefer Jo or Josie lol x

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