New member - lots of questions

Kirsty1979 Member Posts: 30

I’m a 31 year old female and have recently been diagnosed with seronegative arthritis affecting both knee joints. I first started to experience problems around 6–7 years ago and since then I’ve been fobbed off by doctors who never seemed to take my symptoms seriously. Stupidly, this convinced me to think the same thing and in the end I stopped trying to find an answer and hoped the whole thing might just go away. Needless to say it didn’t. My diagnosis has finally come since I’ve moved to a new area and have consequently been dealing with a new (much improved) medical team.

Anyway, I’ve now been referred to a rheumatologist and am waiting to receive details of my first appointment. In the meantime, I have so many questions so many feeling that I was hoping someone may be able to help me with. I’m angry that I’m only now beginning to receive the appropriate care/treatment and worry how this delay might affect me in the future.

I’m currently experiencing a flare-up which is much worse than normal and won’t seem to subside. (I‘d wondered if this could partly be due to the very cold weather we’ve been having lately? I’d always thought this was a bit of an old wives tale but I seem to notice a lot of people mentioning it on here.) Both knees are more swollen and painful than usual – so much so that it’s making the whole of my legs ache. Is this normal? I notice this more at night time and find my legs get very restless in bed, disturbing my sleep. Does anyone have any tips that could help ease this? I’m currently only taking ibuprofen – it helps only a little and I worry about taking too many because of the effects it can have on the stomach. Would it be worth me going back to my GP while I’m waiting to see the rheumatologist? Is it likely she’d be able to give me something that might be more effective?

I’ve been doing a lot of reading about the condition and have found so many different sites, stating so many different things that I’m starting to feel a little apprehensive. I’m nervous about what’s going to happen next, anxious about the possibility that I may have to take medication for the rest of my life and scared of what the future might hold e.g. will this start to affect other joints?, could there be any other related health issues in store?

Overall, I just feel really down and generally not myself – I’m quite weepy at moment. I recently turned 31 but sometimes feel more like 81 when I struggle to get up from my seat, get out of my car or walk up and down the stairs. I feel more tired than I usually do (not likely to be helped by the sleepless nights when I just can’t keep my legs still in bed) and generally am feeling very sorry for myself. Then I start to feel guilty for feeling this way as I know there are many people in the world with far worse problems than me.

Reading this back, I realise I haven’t really asked any specific questions that readers may be able to answer. I guess I’d just be grateful for people who might be experiencing similar, or have experienced similar in the past, to get in touch.

Thanks for reading

Kirsty x


  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Kirsty,
    Welcome to the forum. Sorry that you have had to find us though. It looks as if you have had a very long journey to get some help. At least you have made a start and will soon be given some treatment.
    If you want to ask any questions you can post on the LWA forum where more people will see it.
    Your doctor will be able to prescribe some anti-inflammatory tables which might help until your appointment comes through. There is a thread on LWA forum about restless legs which may be of interest to you.
    We always tell everyone to keep a record of your symptoms and what and when things are happening. This really helps the consultant when they are making a diagnosis.
    Also make lists of questions that you want to ask at your appointment.
    Some people find heat helps the joints. Have you tried any of the anti-inflammatory gels?
    It is very understandable that you are weepy it has been a shock for you even you suspected that there was something wrong.
    Please Kirsty, resist the temptation of going through all the web sites. Keep to the Arthritis care sites and nhs ones.
    Hope to see you posting soon,
    Lv, Ix
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Kirsty and welcome to the forum.

    I know someone from the helpline will be along today, but just wanted to say "hello" in the meantime.

    I am so very sorry that you have been struggling so much and that you have not been getting the medical treatment you need until recently. It really is no wonder you are feeling so down about it but, hopefully, now you have found this forum, you won't feel so alone with it because you will be in very good company here and people are very supportive.

    Whilst you are waiting to see the rheumatologist, I think it would be worth asking your GP for some anti-inflammatories, together with some medicaltion to protect your stomach (in my experience docs are not good at remembering to prescribe the stomach protectors but it is important to protect your stomach if you are taking anti inflamms regularly). The doc might also suggest some painkillers or something to help you to sleep.

    In terms of restless legs, as Ironic says, there has been a post in the last few days about this on Living with Arthritis forum which you might like to read. I will go over and "bump it up" to the top of the list for you in a min so it's easy to find.

    An arthritis diagnosis of any sort is very scary Kirsty and you understandably have loads of questions and concerns. If you re-post your message on the Living with Arthrtis Forum, it will be seen by more people and you will, I am sure, get some helpful replies.

    Thinking of you.

    Love Tilly xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ooooooh this sounds familiar: it took five me five years from the initial problems setting in to getting the first bit of treatment (1997-2002) then I was finally diagnosed with PA (psoriatic arthritis, a sero-negative) in October 2006. It happens that way for some folks, and I am sorry it has happened to you.

    As the others have suggested, start keeping a diary of symptoms - measure your knees as well, at its biggest my left was 27" in circumference, my right never matched that because I started the meds in 2002 and it didn't start until October 03. Note what activities aggravate matters (I cannot queue any more, I can't stand still for long enough!) and what helps. If your knees are uncomfortable in bed try sleeping with a pillow between them, that does help to relieve some pressure: I use one lengthways from my ankles to my - ahem - groin area.

    Don't scare yourself with reading up too much on the tinterweb - ask us questions about meds etc, we have all been there and tried them and they are not as scary as others like to portray - yes, they have their drawbacks, and yes, one can react badly but we are all carefully monitored and problems are usually caught very early. You can also ring the helpline here - they have a wealth of publications and info they can send to you. You are not alone, kirsty, you've found us: we're good people and we know our stuff. I wish you well. DD (forum member)
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • helpline_team
    helpline_team Posts: 3,602
    edited 30. Nov -1, 00:00
    Hi Kirsty

    Welcome to the forum, I hope you find our online community helpful, particularly to realise you are not alone, and as you can already see, our forum members have a lot of useful information and advice to offer you.

    The time spent waiting for a diagnosis has left you with a lot of unanswered questions, which is understandably disheartening. Hopefully now with the right medical team beside you the future is looking brighter.

    Whilst you are waiting for your first appointment with the rheumatologist you may like to make an appointment with your doctor to discuss a review of your pain medication and the restlessness you are feeling. As they could refer to a physiotherapist, who can show you how to use your joint is the correct way.

    There is a lot of scary information out there in cyberspace, so you may find it useful to read our factsheet on seronegative arthritis:
    In the factsheet you may notice there is more than one type of seronegative arthritis, so before your next appointment you may like to make a list of questions to ask, such as what type of seronegative arthritis do I have.

    You mention that you are currently having a flare up, this could be for many reasons, I am wandering whether you have been overdoing it recently. Feeling tired is a common symptom of arthritis so learn when to rest and pace yourself.

    Finally, it is understandable why you feel weepy with so much on your mind, but I would encourage you find someone you can talk to openly and honestly about how you are feeling. Remember that you can always phone us here on our freephone confidential helpline. You are in pain, and you have a right to let it out and explain to others that its not easy, without feeling guilty.

    Best Wishes and Seasons Greeting
  • Kirsty1979
    Kirsty1979 Member Posts: 30
    edited 30. Nov -1, 00:00
    I wanted to thank you all for taking the time to reply to my first post. I'm really glad I've found this forum - you seem like a great bunch and it feels so nice to be in touch with people who understand how I'm feeling. It's helped put a smile back on my face already.

    Tilly - I saw the thread on restless legs that you recommended. Thank you, it was very helpful.

    I have an appointment with my GP tomorrow so hopefully she can help me to manage things a little better while I wait to see the rheumatologist.

    Thanks again all - looking forward to chatting to you again soon.

    Kirsty x x