Help please?!

joej

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

maria09

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

joej

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

joej

Hi to any Mods.

Please could this be deleted. I've got another thread in the 'Chat to our helpline team' sub-forum.

Thanks!

maria09

Thank you for your kind words Joe
I've been down the dreaded Atos route not pleasant
There are many posts on here about it just have a look around
I worked for 30 yrs had OA for 10 yrs and inflammatory arthritis for 4 yrs last 4 yrs at work were hell I worked for NHS so you would have thought there would have been empathy there well afraid not so long story short I retired due to ill health and living off my NHS pension luckily my Hubby still works
So retired at 49 what really puddles me off is when people say lucky you to have retired
Well no! I had no choice don't you think I'd rather be working full time getting a decent wage than not and having to be careful with money! Also not much fun retiring when can't do anything due to pain in all my joints telling them its like having severe toothache in my joints it soon shuts them up
My Rhuemy was a bit like yours especially when I told him I was going down the ill health route his answer was I can cure you!! And words to that in my letter he sent to GP luckily all my paperwork was in and was supported by my GP, occupational health Dr and Orthopaedic Consultant all who said it was impossible to carry on my job as a qualified nurse on a very busy ward and to cap it all he's naffed off abroad for a year and surprise surprise I'm not cured!
So I know exactly how you feel
Keep fighting
Maria

maria09

Joe
Think you will get more replies on this one than the other one
Maria

joej

Oops! Thanks Maria.

Mods - please keep this post open! Thanks

Sorry to hear all you've been through. Time to try and get someone on my side. The stupid thing is I feel like no one believes me which is really annoying!

No problem Joej

Mod
YEH

maria09

joej wrote:

Oops! Thanks Maria.

Mods - please keep this post open! Thanks

Sorry to hear all you've been through. Time to try and get someone on my side. The stupid thing is I feel like no one believes me which is really annoying!

I had that for years just remember we believe you we know what you are going through
You can pm me if you think I can help
Maria

joej

Thanks again, but I hate opening up usually!

maria09

joej wrote:

Thanks again, but I hate opening up usually!

It does help especially on here as we all go through the same thing
And know how each other feel
You have made the first step so just post. When you like you don't have to post regularly just when you need to
Maria

dreamdaisy

Hi Joej, it's nice to meet you and I hope we can help with information and support. My auto-immune arthritis began in 1997 but was not recognised as such until 2002. On reflection, when thinking about my medical history (severe childhood asthma and eczema), it seems blindingly obvious but at the the time I knew nothing about arthritis and never even considered it as a cause of my ever-fattening left knee. Neither did my then GP. Now I know better (and she's long been kicked into touch).

There are many different types of auto-immune arthritis and pin-pointing the actual one that is causing you trouble may take some time. My initial label of inflammatory arthritis was applied in 2003 but expired in October 2006 when my skin obliged with a bout of psoriasis on my palms and soles. The medical penny dropped, the cry of 'Ah-ha!' went up and I was redefined as having psoriatic arthritis (PsA). Nothing else changed, however, and I now have osteo too. Deep, deep joy.

I was kinda lucky in that my inflammatory markers (once I was having blood tests) were always high but I was always sero-negative for RA. PsA is a sero-negative condition and this is why these things can take time to sort out. I firmly believe you can be in pain without swelling and I am surprised that your rheumaotologist is apparently doubting you. Given your family history of auto-immune troubles and your own health I do wonder why this is. You could show three rheumatologists the same set of results and gain three different interpretations but, in your case, another view may be worth having.

I wish you well. DD

Boomer13

Hi Joe, I'm pretty new to the forum too. I have seronegative inflammatory arthritis/spondyloarthropathy too.

I also have pain in multiple joints, well all of them, spine and tendon, etc pain without having inflammatory markers in my blood. This pain can be so intense that I faint when I struggle to do something. My pain levels skyrocket when I exercise. Needless to say, I have retired too and only 47!!

I also have the bleeding into joints problem you describe.

I've done all that doctor's have told me to do with the hope my problems would go away. They haven't and it's now 3 years since I've been able to work so I try to be realistic that they won't now.

My pain levels have been doubted by a few doctors and it's tricky finding people who will listen, but they are out there. I know the pain is real. I have always been a very physically fit, strong and a hard worker. It's doubly insulting when you are like this, want to go back to work, can't, and still people look at you like there can't be anything wrong. It's a frustrating situation to find yourself in.

I'm fortunate now I have a good rheumatologist who believes me and is working to help as much as possible. It's very tough isn't it? My husband is helpful in keeping me sane because he always reminds me of how much I used to be able to do. I recently changed GPs and found one who will listen. It was tough to finally come to the conclusion that my long-time GP wasn't taking me seriously. I now realize I stayed with him far too long.

Wish you well, and it really helps to know there are others suffering out there with these illnesses. Sad but true.

Anna

Keren

joej wrote:

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!

Hi Joe,

This sounds a little like me - I also have widespread pain, pain in my neck, lower back, and everywhere where tendons join into the bone (called enthesitis). I'm reasonably certain I have something from the spondyloarthritis family. But because my inflammatory markers came back normal, I was declared 'healthy'!

After doing some research, I found this article. I've printed it off and am going to take it to my next rheumie appointment (yeah, I know, I'm going to be THAT patient... ). The interesting and pertinent paragraph is this one:

In the absence of joint swelling, enthesitis may thus be difficult to recognise. Although the SpA are truly inflammatory disorders, the enthesis is a relatively avascular structure and inflammatory markers, including erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP), may not be elevated in the presence of entheseal-related pathologies. This is best exemplified in the inflammatory back pain that accompanies ankylosing spondylitis, where undoubted inflammatory activity is not necessarily associated with elevation of inflammatory markers. Therefore it is highly likely that some cases of enthesitis-related disease are being missed, misdiagnosed and not referred to rheumatologists. - See more at: http://www.arthritisresearchuk.org/health-professionals-and-students/reports/topical-reviews/topical-reviews-autumn-2009.aspx#sthash.JdUwS03p.dpuf

Basically, because there isn't much in the way of blood supply running through the part where tendons and muscles join onto the bone, when they become inflamed they don't necessarily release the same inflammatory markers that other types of arthritis always do. So judging patients like us on blood tests alone is a rubbish way of trying to achieve a diagnosis.

Hope that helps.

Keren

joej

Hi guys

Thanks very much for your messages and help so far - it's very much appreciated.

As I mentioned previously, there were no signs of inflammation according to my rheumatologist. HOWEVER... upon paying a visit to my GP today, he checked my previous bloods and advised my CRP levels were high which would suggest I was suffering from some inflammation. This only gives me less faith in the rheumatologist and I'm glad I've switched - just have to wait to see the new one now, so roll on the 16th!

To top it all, I received a letter from DWP this week telling me that because they hadn't received my ESA50 I will now be on £15 a week until they receive another one. Great.

Oh well. So glad I've found this forum though.

I hope everyone's feeling good!

Take care

Joe

maria09

Hi Joe
Very strange your rheumy didn't pick up on your raised CRP unless he/she did but wasn't enough to worry about!
My Rheumy is always on the ball with blood results saying that mine are never raised even in major flare up! He says he always goes on what the patient tells him rather than just what the bloods say
Did your GP say your CRP was?
As for ESA I'm surprised they still pay you if you haven't sent sick/fit notes as they do anything not to pay out!
I retired due to ill health assessed by Atos, DWP use Atos to assess for ESA and was assessed fit to work!
Luckily only needed to claim ESA from end sept 12 till beginning of march 13
When pension kicked in
How can 1 Atos say I'm not fit for work and another say I'm fit does not make sense
Maria

joej

Yes, it is a bit strange in all honesty, although my GP did seen to think it suggested inflammation.

Changed rheumatologists though, so hopefully they might start taking this seriously.

Thanks again for all the replies!!