My health Jigsaw!

Rachel1962 Member Posts: 6
edited 27. Aug 2017, 19:04 in Living with Arthritis archive
It's been a long time since I said hello - partly because I have been waiting for referrals and results.
So a potted history - Feb 2015 - MRI scan diagnosed with grade 4 osteo in right knee caused by chondromalacia (excuse the spelling)- following 2 years of being told my knee pain was referred pain from my hip (bursitis). Left knee also bad (xray)
July 2015 - arthroscopy/ debridement / microfracture.
During recovery I found I was unable to use a cane for any length of time without my hand ballooning.
At this point I should say I had multiple issues with joints - hips, shoulders, neck, back and knees. I have had acupuncture, physio, and saw an osteopath on a regular basis.
I have also had tendinitis in both elbows and feet and a rotator cuff impingement - all treated with steroid injections
I was working for NHS Blood and Transplant with a mobile team, so on my feet all day (long days) and a lot of manual handling - setting up equipment etc.
May 2016 - medically retired (tier 1), which allowed me to find other work (necessary as not enough to live on!) Unfortunately my job hunting has resulted in zero interviews (yes- I declared my condition).
Also had bloods taken around the same time which showed raised inflammatory markers but no action taken.
Forward a year - my right knee pain has improved no end through miles of walking (as opposed to standing) - although left knee "clunks" each step. And I still feel so "ill"! Joints flare for no reason.... So finally GP re-checks markers (result the same) refers to Rheumatology and the eventual conclusion is inflammatory arthritis as well.
I am now taking Sulfasalazine. I booked my first 2 week blood test myself, and the follow up GP call (at 3 weeks) - at which time my GP admitted he knew nothing about the diagnosis or treatment/ checks needed ......
So - where to now? I requested PIP but the form sits in its envelope ..... I was assessed for ESA when my sick pay dropped to half pay and really didnt know what was expected (I did the brave face thing we are all expected to do). The reality is I have just bought a second hand bath lift..... sometimes I cant even lift the kettle (wrist gives way) - and live on toast!
I also know now that I have had these symptoms for many years - I put them down to aches and pains from doing a physical job. Hence the jigsaw.... slowly pieces are falling in to place - shame its taken such a long time....


  • palo
    palo Member Posts: 239
    edited 30. Nov -1, 00:00
    Hi Rachel,

    I so understand the taking years to put things together, it has been the same for me, you dismiss things and then realise you had drawn the wrong conclusions, I thought my painful hands were down to the (existing) carpel tunnel until they diagnosed arthritis this year.

    I have also had intermittent back pain for over 20 years which I am now going to push for have checked out, after 2 severe bouts of sciatica in the past 3 months.

    Unfortunately it is not easy to make the right connections, I have been on so many drugs (with very bad potential side effects) for 18 years that guessing what is going on is never going to be easy...
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    I think you're suffering from a lack of communication between hospital and GP. The GP can't do anything about bloods unless he's been told why you need them and therefore what he is to test for. Unfortunately, three weeks isn't long, by modern standards, for things to be relayed.

    I think you'll find it's usually up to you to arrange your own bloods though. However, someone must be responsible for checking them. For me, this has always been my GP. The rheumatologist tells both me and the GP how often tests are needed and then I book my own. The GP tends to get a bit twitchy if I stray over the time slot.

    Inflammatory markers are not precise things. They may be high in someone with no inflammatory form of arthritis and low in someone who has it. Our bodies are strange beasts.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • JenniferB27
    JenniferB27 Member Posts: 74
    edited 30. Nov -1, 00:00
    Oh my word you sound like me! Physical job, going through the medical retirement route at 45! Scared about future jobs. Have OA in both thumbs, both knees and neck, convinced I have carpal tunnel in both wrists, bloods negative for RA, feel ill all the time, pain in shoulders, lower back, right thigh thought to be sciatica, elbows pain and burn! Sick and just want a diagnosis!
    I hope you get the answers soon x