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Miserable

magentamagenta Posts: 1,604
edited 30. Jan 2009, 15:31 in Living with Arthritis archive
Hi,
Apologies for the length of this post!
I had my rhuemy appt. today and I was expecting big things but it was a disaster :cry: I don't know what to do with myself-I'm so down about it all. Yet another rhuemy appt. where I've came away thinking that the drs think I'm faking it!
I'm seronegative and therefore have no RF in blood.

As you might know, I've been having terrible problems with lower back, chest and hips. All the xrays came back fine with regards to 'no abnormalities in joints'. That's good in one way but not in another, i.e. why am I in so much pain? All my bloods came back normal, low esr and crp and the dr was basically saying 'you've not got any inflammation'-she never even looked at my swollen fingers and ankles. I could hardly get out of seat and walk to the bed today. My feet are so sore.
They don't know what the lump is on elbow-they xrayed elbows but the way it was done, I don't think you'll be able to see the lump. I explained about getting weird tingling and numbness in fingers and hand and she said it sounds like my ulnar(?) nerve is being pinched. I have to wait to see what xrays come up with before they'll send me to get a nerve test done. Apparently the waiting list for this is several months!!
They've taken blood to check for vitamin deficiancy and thyroid function - both of which were done recently by gp and they came back normal. The only good thing that came out of it was getting the Anti CCP blood test done but she said they expect that to come back negative anyway :shock:
They didn't have the letter from my dental consultant about my OA in jaw either so they have to write to him and get it sent-again!

They wanted to put me on sulphasalazine but because my bloods were normal they couldn't justify putting me on it. Told them Etodolac wasn't doing anything for me but was told 'well, you'll have to take something' :? My dodgy stomach means I can't take alot of anti-inflams. I've been on several all giving me bad side-effects but she said it was my choice to pick one that I thought had helped me????
Of course, I burst into tears :cry: I came away (in agony) wondering what to do with myself. I do feel like people are thinking I'm a fraud. Am I just imagining all this? I'm gutted, angry and downright miserable about all this. I hate this pain but worse is the not knowing what's wrong with me. I was wanting to apply for a blue badge cos I'm having great difficulty and pain when driving and walking but I guess that'll have to be abandoned!
I've just about had enough of all this, constantly being told 'You're unusual' and 'It's funny how you have all this pain yet your bloods are always ok'. I have went on long enough but hopefully you've managed to get to this bit :wink: I feel better (well, a teeny bit) getting this off my chest. Thanks,
Magenta x

Comments

  • purvesrosiepurvesrosie Posts: 59
    edited 30. Nov -1, 00:00
    Your not a fraud and i'm sure the doctors don't think that. It must be so frustrating for you but we're all here to listen. Sorry i can't be much help. Thinking of you
    Rosie
  • josiecjosiec Posts: 386
    edited 30. Nov -1, 00:00
    Hi Magenta,
    So sorry to hear you are having such problems - am sure lots of us can empathise with having no apparent 'reason' for pain, but that doesn't mean it's not there. I know what you mean about almost wanting something to be on test results so you know why you're feeling the way you are, I've felt that before. I'm sorry I can't offer any suggestions, but am thinking of you.
    Josie :wink:
  • ShellShell Posts: 45
    edited 30. Nov -1, 00:00
    HI MAgenta
    I totally understand how you are feeling i have the same problem if you look through my post feeling low you will understand and i too feel like a fraud and it doesnt help when everything comes back normal this doesnt help when your in pain does it.
    Been diagnosed then saying it may not be that doesnt help its all very confusing. I would like to say to you stick at it and it will get better but i would be lying at the minute so all i will say is chin up and hopefully things will get better for both of us.
    Michelle
  • jackie1955jackie1955 Posts: 858
    edited 30. Nov -1, 00:00
    Hi Magenta, Sorry to hear your so upset on top of everything else.....
    Sending you a big hug and hope you feel better soon.
  • suncatchersuncatcher Posts: 2,174
    edited 30. Nov -1, 00:00
    sorry you are upset sending electronic hugs out to you and you are not a fraud. joanne price
    Joanne
  • woodbonwoodbon Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi Magenta, Sorry
    Sooo sorry you've had a bad day. I know how you feel, and its so frustrating. The test wait is awful, at least I had mine quite quickly. I hope things get better for you soon. Lots of love Suexx
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    Thanks everyone,
    I'm still feeling very low. I'm struggling to know what to do/think? Everyone keeps saying that it's great that nothing shows up in xrays. Do I have to become so ill that eventually I do have abnormalities? My ankles are swollen and I'm now worried that the xray of my feet didn't cover my ankles. What if they are damaged and I won't know? Sorry for being miserable,
    Magenta x
  • mash65mash65 Posts: 834
    edited 30. Nov -1, 00:00
    hi,eileen.check ur messages when u feel better.ie b/badge
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    Got it!
    Thank you x
  • redpoppyredpoppy Posts: 108
    edited 30. Nov -1, 00:00
    hi magenta,i dont know if this will help you as i dont understand it myself,but i went to my gp with swollen fingers pain and generaly feeling tired 2 years before i was diagnosed.they did blood tests but nothing showed up or thats what they told me.i at that time thought arthritis was only an elderly persons disease so i never thought any more of it.it did ease off and i just got on with my life.but then 2 years later it came back big time.went back to gp they did tests again and they said i had RA.that was 18 years ago and they now think i have PA.as i say i dont understand it myself.but i must have started with it the first time i went to the gps.i know its so frustrating for you to be told everythings normal when you definatly have the pain and swelling, i so feel for you.bet you feel like banging your head against a brick wall.
  • WonkylegsWonkylegs Posts: 3,504
    edited 30. Nov -1, 00:00
    poor you!

    so sorry that you feel so low.
    Can you talk to your GP about how you feel?
    Or ask for a second opinion?

    the helpline may be able to help with other ideas.

    hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  • honeykins59honeykins59 Posts: 20
    edited 30. Nov -1, 00:00
    sorry to hear about your problem i know how u feel for 5 years i was in alot of pain and having falls nobody could tall me why except take painkillers which done nothing it was not until my knee really swollen up and i got rushed in to hospital that the done some tests and it came back with sero negative arthiritis when i asked what that meant i was told it was rh arthiritis then i had x rays and they all came back normal so i felt a bit like a fraud yet when i saw the rhummy clinical nurse she explained it all to me you can still have normal xray and have seronegative but itis still rh arthiritis im now on metho 20mg so keep the chin up dont give up keep on being positive they will get to the bottom of it
  • bluesky05bluesky05 Posts: 39
    edited 30. Nov -1, 00:00
    Hi Magenta,

    So sorry to hear your news. I totally understand where you are coming from as I have been going through the same thing for the past 2/3 years. Absolutely nothing shows up anywhere for me either.
    Whilst I am glad that that is the case, it is very frustrating not knowing what is actually causing the pain and swelling. I am on a review for a year at my rheumatology dept. and the nearest I have got to a diagnosis is possibly palindromic rheumatism!
    It has taken me a long time to get my head round it all particularly as it leaves you feeling like you are a fraud and that you are imagining things. My advice is to keep a record of all your pain, swelling etc. and to take photos of all your swelling and inflammation. And lets hope and pray that we are all (Shell and others in the same boat) given an explaination for what is going on soon! Keep your chin up as best you can. x :)
  • colinonecolinone Posts: 1,406
    edited 30. Nov -1, 00:00
    Hi Magenta, your not a fraud love your in pain and just because the doctor cant find the cause does not mean your not sick. First of all have a hug, there now sit down and ill put the kettle on. I'm just going to tell you a little story. I first became ill with arthritis in the early 70s. I lost the use of my legs for about 12 weeks and i had pains on my pains. got the use of my legs back but in pain and feeling ill all the time. Problems with trapped nerves they said. in 1982 they diagnosed RA and PA so it took a long time i had to waite 10 years, feeling like an idiot going to the hospital and being told get on with it. The only reason i found out was going for an op i was asked by the Anaesthetist how my arthritis was. I dont have it, yes you do, know i dont, its all through you he said. it was in my notes and i had not been told. So i know just how you feel, the problem is coping with it all, tell me has the rheumy givin you another appointment . Take care and keep your chin up
    Colin
  • nearlybionicnearlybionic Posts: 2,204
    edited 30. Nov -1, 00:00
    Hi Magenta
    First of all I want to send you a great big hug. Your pain is real, and just because they haven`t found the definitive cause does not take away that pain. I know what pain is like and waiting for the post man or phone to bring appointments etc.. It is really frustrating! :x
    I hope that you are able to get the answers you need soon , but in the mean time take care and I hope you have some painfree time soon xxx
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    Thanks all,
    I go back in 8wks. I'm really down today-I need to snap out of it. Been up all night with wee boy who's ill and hubby's got tonsilitis :cry:
    Magenta x
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    colinone wrote:
    Hi Magenta, your not a fraud love your in pain and just because the doctor cant find the cause does not mean your not sick. First of all have a hug, there now sit down and ill put the kettle on. I'm just going to tell you a little story. I first became ill with arthritis in the early 70s. I lost the use of my legs for about 12 weeks and i had pains on my pains. got the use of my legs back but in pain and feeling ill all the time. Problems with trapped nerves they said. in 1982 they diagnosed RA and PA so it took a long time i had to waite 10 years, feeling like an idiot going to the hospital and being told get on with it. The only reason i found out was going for an op i was asked by the Anaesthetist how my arthritis was. I dont have it, yes you do, know i dont, its all through you he said. it was in my notes and i had not been told. So i know just how you feel, the problem is coping with it all, tell me has the rheumy givin you another appointment . Take care and keep your chin up
    Colin

    Hi Colin,
    Poor you :( That's horrendous.
    I've got another appointment for 8wks so not too long I suppose. I've had 20yrs of pain and 'not knowing', I should be used to this.
    I think cos I've now got OA in jaw, what else is going to happen to me before they try and do something? Even when I told the dr ( about 10yrs younger than me!) about the OA, she wasn't that interested. They've not got the letter from dental consultant and she didn't want to know :shock: What on earth do you have to have before they take you seriously?
    Thanks Colin, for trying to make me feel better,
    Magenta x
  • lindalegslindalegs Posts: 5,369
    edited 30. Nov -1, 00:00
    Oooooooh Eileen I'm really sorry you're feeling low and poorly at the moment. :( I don't think it helps because you're surrounded by frustration too - sometimes I find that harder to cope with than the pain :shock: It doesn't help that your family are ill and you're having to support them when you really need someone to prop you up.

    You're not a fraud either - unless you've been up to no good behind our backs :shock: :wink: - pain is destroying, it's tiring and you need to take a little time for you and do something you really like just for 10 or 15 minutes - even if it's a hot bubbly bath or curling up with a coffee and your fav magazine or paperback.

    Hope you feel better very, very soon :D

    Luv Legs :)
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    Thanks Legs,
    I just don't know what to do with myself. I've tried resting but in this house you're lucky getting 2mins :lol: I can't really bend my arms at the moment either, my elbows are hurting when I bend them :? I need to do some ironing now-that should be a laugh :?
    Thanks Legs,
    Magenta x
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