Help please?!

joej
joej Member Posts: 18
Hi All

Absolutely new here but I didn't know where else to turn!

I've posted this in another area on the forum, but wasn't sure where to post so have done both. I hope that's okay...

Last year, after being admitted to hospital due to a suspected blood infection, I was eventually diagnosed with auto immune inflammatory arthritis. At that time I couldn't walk and was suffering from extreme pain.

Since then, I have experienced a great deal of pain in my neck, wrists, fingers, feet, ankles and especially my lower back on a daily basis, although it is better than I was this time last year.

I find it very difficult to sit or stand for periods longer than approximately 5 minutes, as the pain in my lower back comes into full effect. I cannot bend without hurting and to say I am no longer able to participate in tennis, golf etc. or live my 'old' life is a bit of an understatement. I constantly feel like I've sprained my body.

The problem is I show no signs of swelling. My blood tests are coming back saying there is no inflammation and my rheumatologist has asked if I may be "a little over-sensitive to pain". I have assured her I'm not, having dealt with another (blood-related) disability for most of my life, where I bleed into my joints, as well as aches and pains in my knees since I was young due to another condition, but she still seems to push an overwhelming sense of paranoia onto me every time I go to see her. She gives me the impression she doesn't believe what I'm telling her, despite the fact I'm being 100 per cent genuine. Apparently, If I don't have signs of inflammation in my blood tests, I shouldn't be aching!

I am currently waiting to see another rheumatologist at another hospital. I am as active as I can be, when dosed up on my endless amount of tramadol, solpadeine and methotrexate, such as the slow walking of my dog for a couple of hours a day etc, so I wouldn't say it's lack of exercise. The reason for my post is because I wondered if anyone else on this forum experienced a similar thing to me, whereby they showed no signs of swelling, but continued to ache.

I'd really appreciate any feedback to see if I'm the only one with what could be a strange phenomena!!

Many thanks for reading.

Joe

Comments

  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Joe
    I just posted a long reply and its disappeared even sent it twice grrrr
    In a nutshell
    You are not alone your history is exactly the same as yours normal bloods the lot
    Maria
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Found my long reply its on the one in the other forum
    Doh :roll:
    Maria
  • fowls48
    fowls48 Member Posts: 1,357
    edited 30. Nov -1, 00:00
    :lol::lol::lol: i just did the same crikey it was a noval and its lost .So in short .

    Hi joe

    you sound like me a year ago .The hospital referred me to the pediatric dept. do not go via doctor as you will have to pay .If you are not walking properly it will affect other parts of your body .ie knees and back .I also get bad cramps down the left thigh .

    I have invested in a memory foam mattress which has helped alot .There will be other members along shortly to help you out .Sorry you have had to join the forum but am very pleased to meet you .


    Fowls
  • joej
    joej Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks Maria - saw your message in the other sub-forum.

    And thanks too Fowls! I'm feeling like I'm not alone already! Ha. I can't wait to see if my new rheumatologist is a bit better than the last one. Pleased to meet you too.

    Thanks again

    Joe
  • joej
    joej Member Posts: 18
    edited 30. Nov -1, 00:00
    I don't mean to hog, but decided to try and merge the replies into one forum to make things easier. I'll delete the other thread!
    maria09 wrote:
    Hi Joe
    I'm exactly the same as you it was like reading my own history
    I too have never ever had raised inflammatory markers every blood test comes back negative
    My rheumy kept asking me if anyone in my family had inflammatory bowels disease and for 4 yrs I kept telling him no no no until last July my daughter was rushed in to hospital requiring 3 units of blood her hb was 5.4 should be roughly 12-14 for a female where she was eventually diagnosed with Ulcerative Colitis when I told him he said I knew it, I knew someone had to have it as they seem to go hand in hand with inflammatory arthritis
    I'm glad he was happy as I'm certainly not I feel like its my fault she has this as I've passed it down to her although they are not sure it's genetic I'm not sure they really know to be honest
    So Joe you are not going mad or imagining it its real there are quite a few of us out there
    Hope it's helped and not made you feel worse
    Keep fighting
    Maria


    Hey Maria

    Blimey, that was quick. Thanks for getting back!

    There's certainly a lot of history in my family with immune problems too. My mum has Ulcerative Colitis and IBS (not sure if these are under the same wrapper) and my aunt (her sister) has Crohn's disease and psoriasis.

    Rheumatologist said at my first appointment that 95% of people with this get better, but it looks like I may be in the 5% due to family history which was nice to hear...cough.

    I think my main issue now isn't the arthritis, but for the medical professionals to believe me when I tell them about my pain! I've basically been out of a job for over a year and am on ESA. I had to fill out an ATOS form the other day with a view to being assessed face-to-face and I dread to think what my rheumatologist is going to write if they ask for her input.

    It's not like I don't want to work - I've tried it and can't. I did a voluntary work placement for a four months and felt like sh!t having to sit down at a desk all day, as well as travelling in, despite it being in my car. I'm not work shy either. I've had part time jobs from the age of 11 - 18, then full time since I was 18 - 34. In fact, it was my last job that I feel brought the arthritis on, as I developed a water infection after being bullied for a series of months, prior to ending up in hospital.

    So sorry to hear about your daughter. It must be quite harrowing for you and such a worry. It's not your fault though, so chin up! I don't even think about the fact that my family have immune issues and that's why I've got them, so I doubt very much your daughter will resent you for it!

    Thanks again

    Joe
  • helpline_team
    helpline_team Posts: 2,251
    edited 30. Nov -1, 00:00
    Dear Joe,
    Thanks for your post to Helplines. I'm sorry to hear about the pain you are experiencing and the impending ESA assessment. When you contact us at Helplines we do not have the hat on of being medically qualified but we are very much here to listen and offer support and information. If you'd like a chat about things we'd be very happy to give you as much time as you need.

    At least from what you are describing your diagnosis is not in question (if I've got it right) so you are being treated for inflammatory arthritis. Good luck with second specialist too.

    I think I'm right in thinking that among one family of inflammatory arthritis - the sero negative one - it can be the case that what you experience may not be easy to verify in many of the standard tests. What you may want to find out from the specialist is whether they have anything up their sleeves these days for assessing the severity of a sero negative type of arthritis and whether that approach might be useful in your case.

    You may also want to ask whether you can be seen by someone like an Occupational Therapist in rheumatology who can assess your functional disability and help you defend any hostile paperwork from ESA machinations if it comes to it.

    And finally do get in touch if you'd like any more information or support.

    Kind regards

    Guy
  • joej
    joej Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi Guy

    Many thanks fro your post, it seems as thought this forum is a great breath of fresh air and one I can't believe I've only just stumbled across!

    I will take up your great points with the new consultant in July.

    Many thanks and kind regards

    Joe
  • oldies
    oldies Member Posts: 66
    edited 30. Nov -1, 00:00
    Theres more of us than you may think with the same problem,I have an inflammatory arthritis they think it is caused through Crohn's disease,pain doesnt always show up in your blood results even though you can hardly move with the pain.My specalist says it doesnt always show up,but they should be believing you whatever the result is.Keep active but dont over do it is what the physio tells us,if your on a good day dont go mad doing lots of things you will be twice as bad for days afterwards.This forum is a god send to may of us arthritis sufferers even if its just to get things off your chest always someone to hel or listen.
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Joe
    Just wondered how you were getting on?
    Maria :)