At the end of the day you are on your own!

summer23
summer23 Member Posts: 6
edited 8. Mar 2011, 14:37 in Living with Arthritis archive
Hi, i am new to this site, never bothered before, as i feel that you are on your own in this life.

I was diagnosed with fibromyalgia 20 years ago, i thought i had things bad then, but ten years ago i was diagnosed with Rheumatoid Arthritis.I also have osteoarthritis of the HIP,
My RA has been in a constant flare up for four years, when anyone asks me where it hurts, i say its easier to say where it does not hurt.

I have been on methorexate and sullfazazine for four years.
also take morphine/tramadol/paracetmol/Amitrptyline/folic acid/

I was supposed to start the Anti-TNF 2 years ago but the rhumey nurse keeps giving me excuses, i admit at first it was because i kept getting an infection with my teeth, but that was sorted out 12 months ago.
On my previous visit to her she was on the computer doing her car insurance, i was furious, but said nothing, after all she always makes me wait at least an hour after my appointment time.

2 year ago i saw a Orthopaedic doctor for my hip, he said i needed a new hip, but he scared us by saying that because i also had fibromyalgia that i would not feel the benefit and that the recoverey would be 12 months.

I am seeing the Orthapedic doctor next month, as i now know that i need the operation, no matter what he says.

I am now starting to be a bit aggressive with the Rheumatoid nurse and doctors, i feel that is the only time that they really listen.

Now of course i cannot have the Anti-TFN incase the operation happens quickly, well thats what the nurse says.


Thank god i have a good gp, she keeps a check on my bloods, and she telephones me every month when my methotrixate is due.
I totally trust my gp, thats more than i can ever say of the nurses and doctors at the Rhumatoid clinic.

My Occupational therapist was great, they gave me a shower chair, bars for the side of the bed, also a chair raiser and recliner which is a godsend, they even arranged for me to get a electric wheelchair.

I never go out unless its to the doctors or hospital, i try hard not to get depressed, i just sit and think that i am lucky to have 3 healthy grown children and my hubby, after all their are children that suffer even worse, so thats my antidote for depression. :grin:

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Oh dear, you are low, aren't you? I am so sorry, I can empathise with your emotions but I think the very fact that you have posted here belies your words. Luckily, being an only child, conciously without any descendents and without friends who 'suffer' I was quite happy to cope on my own - or so I thought. It has been a revelation to find this site. The support and friendship I have received has been incredible and I sincerely hope you don't miss the opportunity to find that for yourself. I wish you well. DD
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi there,
    You have suffered a lot over the years. I expect the medical staff think you're an old hand at this so they don't need to fuss over you but I am glad to see you are expressing your frustration with them. Sometimes you have to put your foot down.

    I wasn't allowed to have a hip op UNTIL i had got the R.A under control which was done by starting anti TNF's. When this improved after taking the Humira(anti TNF) I was put on the hip-op list. I started anti TNF in Oct 2008 and had my hip replaced in July 2009.

    Please do not feel alone with your health problems. There are lots of us on here in a similar position and you will get good advice if needed.

    Regards
    Elizabeth
  • valval
    valval Member Posts: 15,897
    edited 30. Nov -1, 00:00
    none of us are alone we have each other. even if it only to let of steam we support each other through hospital visits ect give advice, but most important listen and understand. no one who does not suffer can understand the worry and exhaustion that goes with arther but we do and give each other courage on bad days val
  • barbara12
    barbara12 Member Posts: 21,235
    edited 30. Nov -1, 00:00
    Hi Summer
    And welcome to the forum, sorry you had to find us, but you will not be alone.
    You have gone through so much, I just thank goodness you have a good GP,
    I do hope you stay with us, we all try to support one another, and we are always here when you want to have a rant or just have a chat.
    Leaving you some gentle hugs (((((()))))
    Love
    Barbara x
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi Summer
    You have suffered with this for a long time, but you are not alone, I understand that it must be very frustrating for you, particularly if you are not able to get out very much.
    I hope that you will stay with us I have been on the site for less than a month but have found so many new friends - I cannot express to you how helpful and supportive they have been, I am sure that you will soon feel the same way.
    But I also hope you stay because you will have so much to share from your experiences and your life and we need that too.
    I hope that you get your treatment sorted, we can support you through it.We also have a good laugh and a giggle. some days I wondered how i coped before I found this site
    Take care and pop in and see us soon
    Cath
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Summer :smile:

    Welcome to the forum. I think you have done something very positive today, joining and posting. I have been on the site for well over three years, some times more than other times, but I always look in every day. It has become part of my life! You have been and are going through a tremenduous amount with your OA, RA and fibro and I am sorry to read this.

    It is good to hear that you are now standing up to the medics and making them listen to you. Sadly many of us have to do that, although it should not be that way. Learning from others on the forum, makes it easier to do because knowledge is power.

    I hope you will stay with us and get to know us better. Many of us are on here every day so you will get to know names.

    I look forward to hearing more from you, there is no need to be on your own if you do not wish to be. We look out for each other on here. People come and go, for various reasons, but many of us stay and that is because it is such a great forum.

    It is also reassuring to know that the helplines are there to contact by phone, pm or on the helplines zone. They are a truly wonderful, dedicated, very knowledgeable team who have helped many of us.

    Look after yourself,

    Elna x
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi from me too Summer, we are all here for each other as and when is needed... No need to feel like you are on your own...
    This is a great place to be...

    Hope to catch you soon

    Be well
    :grin:
  • frogmorton
    frogmorton Member Posts: 27,386
    edited 30. Nov -1, 00:00
    Hi Summer

    I love your name it speaks of optimism despite what you have been through and are still going through.

    I am glad you have joined us - we are a lovely an supportive group of people who all share and are fighting a common enemy.

    I should think you will have a lot of experience to offer us and l hope we can help you a bit too.

    I am 100% behind you that if you need a new hip you should have one! I am sure you WILL make a good recovery if you remain so determined. I am so glad you have a good Gp - that is almost the biggest problem for folks on here, no so good GPs! Shame about the no so good specialist support you have/don't have.

    How right you are to count your blessings as you do. Sometimes it isn't so easy to look at the positives when life is so very hard.

    I look forward to reading more of your posts

    Love

    toni xx
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Summer,

    Glad you found the forum flower cus well here you are never actually alone. I know what you mean though and agreed with it for the real world totally but I am a loner at heart so its ok with me....

    Except.....

    that's my veneer and under it i am curled up sobbing cus its all so hard so often.

    Not sure if that's the same for you or not but well people tell me I armstrong and independent but i know its an act!

    You do need the hip done and well done for standing your ground (something i have to learn to do as i have just been chucked on palliative care only now and well I think that's a bit too soon.....)

    Its good you can count your blessings and like Toni said its a good way to keep on top of the feelings that will take you down. You clearly have a lot to give the forum with advice and experiences but remember it can and will give you as much back if you need it.

    Tis nice to meet you and if needed for your ortho appointment we do half decent pocket duties. Cris x
  • paddyw
    paddyw Member Posts: 93
    edited 30. Nov -1, 00:00
    Hi Summer,Hope you are feeling a lot better now after all these lovely people are hear to help.I am new to this site, and have had some super repleys . We are not on our own! . Keep in touch keep well Pat( paddy w)
  • julie47
    julie47 Member Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi summer
    welcome to the forum. I found this forum just last year and I am glad I did.
    The people on here are so supportive.
    I hope you get the new hip you must stress that you need it when you next see the ortho.
    Recovery time may be a little longer for you than other people, but you will recover eventually. I had a little operation on my stump (i am an amputee) in august to remove a bursa, the wound has only just closed up as I am on methotrexate for RA. I just had to be patient.
    but at last I have gotthere. I am just so glad your gp is supportive for you.

    I hope you are feeling a little better today and I hope you will keep us informed.
    Take care
    Juliepf x
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    Hi Summer

    I am new to this site too and I am still finding my feet with doctors etc as I have only recently been diagnosed. I am still coming to terms with it all but I am glad that I found this forum. It has helped me already and I have felt so much better since I have met these wonderful positive helpful people
  • summer23
    summer23 Member Posts: 6
    edited 30. Nov -1, 00:00
    :grin::grin::grin::grin::grin::grin::grin::grin::grin::grin:

    Hi, i cannot believe how many people have answered my post..
    i feel a lot more positive after seeing the specialist about having an hip replacement, i am now on the waiting list, which is three months.

    My husband does not want me to have the operation, only because he knows what a **** i am, plus the fact that he would have to seriously look after me, which he is not very good at, but i do not tell him that, it would damage his ego.

    As all i need now is a new body loll.



    Does anyone know what you can take for HRT with methotriaxte, my Gp wants me to come of my hrt tablets because i have been on them for three years.
    I did think of taking Omega 3, but would that effect the methotriaxte or Sulfazaine tablets.
  • summer23
    summer23 Member Posts: 6
    edited 30. Nov -1, 00:00
    tkachev wrote:
    Hi there,
    You have suffered a lot over the years. I expect the medical staff think you're an old hand at this so they don't need to fuss over you but I am glad to see you are expressing your frustration with them. Sometimes you have to put your foot down.

    I wasn't allowed to have a hip op UNTIL i had got the R.A under control which was done by starting anti TNF's. When this improved after taking the Humira(anti TNF) I was put on the hip-op list. I started anti TNF in Oct 2008 and had my hip replaced in July 2009.

    Please do not feel alone with your health problems. There are lots of us on here in a similar position and you will get good advice if needed.

    Regards
    Elizabeth
    Not sure how to reply to people..
    How long did it take for you to recover from the new hip.
    I bet the pain was enourmous.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hi summer, it's nice to hear from you again. I was not allowed anything for the menopause (I was on meth and then humira) so I just got on with it. It's all done now, and I am glad about that. I had a terrible time with hot flushes - and am still having, thanks to the steroids and the humira too (I think). Never mind, it'll pass, all things do.

    A new hip? You go girl, I expect you won't look back. New joints are wonderful things and well worth the inconvenience of a few weeks/ months recovery. I have to go and cook. Blast. DD
  • julie47
    julie47 Member Posts: 6,142
    edited 30. Nov -1, 00:00
    Hi summer
    Really pleased that you are feeling more positive now, and that you are now on the waiting list for your new hip.
    Take care
    juliepf x
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Hi Summer

    Just to say that I have RA and OA and had a hip replacement last May. It did take me longer for my new hip to 'settle down' - because of my RA - and I was told it would take up to 12 months to get the full benefit of the new hip.. Now,10 months later, I am hardly aware of my new hip - it's so good - so don't be put off by being told it could take 12 months.. it will be worth it in the end.

    I had a 'spinal block' and sedation, rather than a general anaesthetic ... and that was OK.

    You will need help for several weeks after the operation, but time soon passes.

    Marion

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