Down in the dumps and confused

purplestorm Member Posts: 54
edited 25. Mar 2011, 09:35 in Say Hello Archive
Hi all,

This is the first time on a forum so sorry if my post is long and not correct, but im in desperate need of getting it all off my chest!

Im 29 years old and have no idea what is happening to my body! It has taken 2 months of constant pain, three visits to my doctor who now refuses to see me, and four trips to hospital in agony to eventually get to see a Rheumatologist. My consultant has advised me I have O Negative Arthritis and in his words "I can tell you what its not but cant tell you what it is" but I cant find any information on it on line so im all confused!
At present I am on the following tablets daily

12 x 5mg Prednisolone steriods
4 x celebrex tablets
sulfasalazine 500mg tablets to be increased to 4 a day over 4 weeks

I am also on Oxycodone and Oramorph solution for the pain, which is constantly in one part of my body or another!

I have purple marks on both my legs betwen the ankle and knee, The pain is effecting both feet including all my toes, both ankles, both knees, both hips, lower back, both hands, all fingers, both wrists and my left elbow.

At present I have limited mobility and use a zimmerframe and wheelchair when the pain is at its worst, which causes the effected parts to sting burn, swell up and sometimes I have a red rash in the effected areas. . At the worst times usually the night I can be awake all night unable to sleep due to the agony i am in.

Im at my whits end as im not sure what I have or when I will be able to get my life remotly back to normal. I have had to stop driving and have had to give up my own business, worst of all I have a three year old son who at the moment I am relying on family memebers to help look after him which is agonising!

Can anyone shed any light on anything

Sorry this post is soooo long but i have no one to talk to and feel like I might scream if I cant get it off my chest

If you think you are too small to be effective, you have never been in the dark with a mosquito.


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    That was a relatively concise post, in my opinion, and I hope you feel better for getting it all down. I am sorry to hear that you are in such a bad way - I have not had a good day one way and another and cannot really furnish you with the answer you deserve, I apologise. :oops: Not many people look in on here so may I suggest that you re-post again on the LWA forum? (living with arthritis) I think you would get more responses there, perhaps from those who have experienced something similar. I am not very computery but there must be some way that you can copy your post on here onto there. I hope so, just to save you more effort. I will come back, probably tomorrow, and try to be more helpful then.

    In finding this forum I am sure you have found a good source of support and encouragement, stick with us, we know our stuff and I am sure that someone, somewhere, will be able to help. The week-ends tend to be a little quieter so keep an eye out, yes? I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    I am so sorry that you are having a tough time at the moment, I can see that it is very difficult for you and obviously your family too! I am sorry but I have spondylosis and OA so can't really help you with the problems you are having as its beyound my experience and knowledge. There are lots of different forms of arthitis - seems that they are all awful. Others will be along to help you I am sure
    Welcome to the site, it is a life saver for many of us and we are able to share our experiences, everyone is helpful and kind and because they suffer too they understand where others may not. We also have a laugh. Hope to see you around the site and wish you well
  • frogmorton
    frogmorton Member Posts: 29,242
    edited 30. Nov -1, 00:00
    Hi Purple

    Just to officially welcome you from me!

    I think we have already met on lWA which is good as i know you are settled in well quickly.

    I hope you find us as helpful as I have and look forward to seeing more of your posts.


    toni xx
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    I am so sorry to hear of your pain.

    A year ago I was initially diagnosed with Rheumatoid Arthritis however upon reading lots of books on it I was not convinced and kept pestering my GP and Rheumy Doc and kept telling them I was sure it was something else. My RA Factor was negative. So they did more tests eventually and was rediagnosed with SLE (a form of Lupus) and PolyArthritis caused by the Lupus.

    What I'm trying to say is DO NOT GIVE UP trying to find answers. It is difficult to stay positive when dealing with the pain, the impact it has on your life, coping with children etc however anything is possible INCLUDING obtaining a correct diagnosis and therefore finding the right medication to get you back on track.

    I found it very helpful to jot down in a diary every day what my symptoms were and when the lessened and when they were worse at what time of day. I also took lots of pictures of the swellings, lumps and bumps and made my Rheumy look at them which helped as usually my symptoms unhelpfully disappear the day of a Rheumy appointment!

    I hope you get the correct diagnosis soon meantime do not beat yourself up about family helping you - YOU would do the same for them.

    Hope you get some pain relief and keep in touch on this website as everyone gives you great support.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Afternoon purplestorm, I hope you are feeling a little better/brighter today. I think carola is right, keep asking questions and hopefully someone will be able to come up with some answers. There are so mny types of arthritis/arthritic-related conditions that narrowing the field as to what it is can be very hard. It took nine years to diagnose me and even now I wonder how right it is. You say it's been only two months so far and you have been told it is some form of sero-negative arthritis, so that is a start. GPs do not know much about this so keep in touch with the rheumatologist. I think I am right in saying it is an auto-immune version of arthritis, ie your immune system is firing up and having a go at your joints etc. It is different to OA which is often termed the 'wear and tear' arthritis.

    You are on a fairly high daily dose of steroids, they should be helping something but I hope you don't rely on them for too long. I liked celebrex, I found them very good at reducing inflammation but my GP took me off them as they were too expensive - unlucky me! I hope they are reducing your inflammation - are you having regular blood tests? What are your markers? (They are called CRP and ESR) I too am on sulph - I think the marks you are referring to could be bruising, I bruised horrendously when I first began it but that soon went. I have been on the maximum dose of sulph for years now, it doesn't affect the arthrhtis but it does keep my skin clear (I have PA, psoriatic arthritis, so my skin plays up from time to time.) One thing you will learn from here is that we all react so differently to the meds in terms of how they work and the side effects one may have.

    You are already on the strong pain relief - I hope you can start to lessen that as the sulph etc begins to have an effect. Right, time to go as the hands are protesting. Take care, I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • purplestorm
    purplestorm Member Posts: 54
    edited 30. Nov -1, 00:00
    Hi all

    Im in need of advise Ive posted yet another rant under sulfasalazine help required dont know where to turn

    can anyone help me??????????

    The desperate one! x
    If you think you are too small to be effective, you have never been in the dark with a mosquito.