Does anyone else just feel abandoned?

Hi All fellow Soldiers

Hope you are all having a good day and feeling well....great.

I have been diagnosed now for 9months, Im on all the strong stuff, hydroxy, sulfasalizine, mtx - max dose, plenty of PK's and diclofenic.....with not much sucess. Im going on Anti-TNF next week so holding out for abit of luck there.

My whole world has been turned upside down and im finding it differcult to come to terms with. Since being diagnosed I have been in the hospital pretty much weekly for bloods, injections, reviews, scans etc.... Now since they annouced the tnf - they have signed me out of the clinic and said just to wait and see how it goes. I can always ring them if im worried about anything they said. I now only go for bloods monthly.....as they have been fine.

I dont know how you guys feel...but I feel a litlle bit out on a limb. The nurses have been great and they havent hesitated in uping my meds, but going for my reviews and seeing the nurse was that extra bit of support, a time to unload, ask questions and a shoulder to cry on....on this rollercoaster of RA. I have been shocked at the lack of emotional, caring and financial support I think RA deserves, I do think all this should be on offer and dealt with at your Arthritis clinic. What I have learnt so far is that this diesease is very much misunderstood and underestimated when it strikes.

Does anyone else feel like this...or had similar experience?

ThankGod for forums like this, were atleast we all understand what each other is going through as we have all been through the motions at some point, a place were we can moan, be emotional and be happy and cheery to help each other through.

Thanks Everyone. x

Lisa

10 Replies

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  • Morning lisa, i'm sorry for what you are going through as i've got ra and fibromyalgia. At the moment i'm having a flare up. Its b""""y hard work just to keep going somedays. You are not alone with the lovely people on here,each and every one here is suffering from ra or fibro and other related diseases. Feel free to rant,share lifes ups and downs we all need a good story as there are times when we can't get out of the house at all. I'm on here every day and even sometimes in the middle of the night. I find that writing on here is theraputic too.

    Keep going girl things will settle soon.

    Love sylvi.xx

  • Hi Lisa,

    It's a horrible feeling isn't it? Sadly the NHS is so strapped for cash that the specialists have to concentrate on the disease & not the person. I was told the consultants have an average of 10 minutes per patient, three times a year - ie half an hour for each of us! But I've found that my GP is much more open to talking about the emotional side, and I was offered a few sessions of therapy too. Have you tried telling your GP how you're feeling? It is a huge thing to come to terms with, and I reckon it'll probably take me a few years yet so also don't try to set your expectations too high. You're allowed to feel dreadful and angry and lonely and frustrated about having this thing, so try not to feel bad about feeling bad (hope you understand what I mean). At the beginning I would just burst into tears at odd times because it was all so overwhelming. But I've found that it does get easier to deal with. Good luck. Polly

  • Morning and welcome xx,

    I remember saying to my rheum nurse that felt abandonded just like you feel, and that was 9 months into illness.We are often left to get on with stuff ourselves, they dont understand that we some times need support!

    You should be able to still access the nurse service and should still have at least twice yearly nurse/ rheumatologists appointments.

    You could discusss things with yout GP and he could help oversee your care and see if there are any other services that you can access to help xx

    Alison

  • Hi Lisa, I see my rheumatolgy clinic depending on how I am every 3 - 6 months. The specialist nurses are lovely and always have time for a chat and even supply a shoulder to cry on, not to mention a box of tissues! I also have a phone number to call for advice if I need it and to also bring forward my appt if I am going through a particularly bad time.

    As the others have said, have a talk with your GP about support or see the practice nurses at your GP surgery - ours are very good. I know after I was diagnosed nearly 4 years ago, I went through the "why me" bit, felt as if no one cared what happened to me and no one was interested in getting things right but my lovely consultant has been a huge help and I don't know what I would have done without him.

    The anti TNF coupled with the MTX etc will help to get this under control and reduce damage to your joints. The anti tnf take from 8 - 12 weeks to really get going so don't be surprised if no improvement immediately but it will help a great deal. I couldn't do without my Enbrel now - it keeps me going.

    Watch your stomach with the diclofenac - any problems see your GP as it can cause difficulties with your tum but if so, you can change to suppositories or a different pill.

    Hope all goes well. Let us know how you get on. LavendarLady x

  • Hi Lisa and welcome

    I am very lucky in that i have a brilliant rhuemy nurse who i can call any time and she is very supportive.My GP is also really good as he worked on rhuematology during his training so he is quite up on RA too - quite rare i believe!

    Please don't hesitate to blog or post if you need to -the people on here really know their stuff and are very supportive whatever the problem.The NRAS helpline is also really good if you need a chat .

    Look forward to hearing frm you soon

    Julie xx

  • Hi Lisa,

    I can really relate to your blog, and hope things improve for you!

    I was diagnosed last year and have too been on a rollercoaster ride, I have tried different combinations and as they haven't worked I have just started TNF - I am looking forward to some good days!

    I am having a bad time right now, and understand the loneliness that we all feel sometimes - I have had to change some things at work and I feel very low, as I am trying to sort things out - I do feel that colleagues are not interested in trying to understand me or RA and I feel like an outsider.

    Anyway, less of me moaning..... My GP is amazing, he lets me cry and understands, he has helped me understand my disease and things that crop up as a result, my Rheumy nurse is pretty amazing too as is my consultant - but they are so busy, but helpful and understanding!

    I hope you find this forum useful - I have made so many lovely friends - all beit that we all have one thing in common - RA!

    Take care

    Pen :)

  • Ladies, I am a newbie here, but an "old hand" at RA....going on 37 years of it. I am 57. It is still a constant struggle. Things seem stable, and then something changes. Whenever I have a flare I get really scared, because who knows what shape I will be in when it lifts. And you are all correct---it does not seem like people understand. I read in a blog yesterday, if you get dx'd with cancer, people will show up with dinners at your door. But having arthritis? Heck no. People think I am a shirker....becxause when I feel really bad I stay at home and become invisible.

    Nice to find you all...(My hands hurt from all this typing)....

    Here is a big group hug ((((((((((((((((((( )))))))))))))))))))))))))))))

    Love, Nina

  • This site really helps. I'm not sure I'll ever really accept this disease, but the anti tnf has made a huge difference. I think counselling has helped me although they don't always understand either. We need a special weapon for the my auntie has arthritis in her big toe brigade.

    Xx

  • Hi Lisa,

    Know how you feel, not a long answer but hopefully some help. Have you got an Expert Patient Programme nearby? I went on one after bring diagnosed for 6 months and it really helped me take control again. I think one of the most difficult things is feeling out of control of so many things that getting some back is really important.

    Sara

  • Morning Lisa.

    I hope you feel more positive after reading all the replies. This site is good. NRAS have support groups and there may be one near you, if not maybe you would consider being involved in starting one? The details of existing support groups are on the main NRAS site.

    Take care

    Christine x

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