Hi from Nottingham!

FunkyCrunky
FunkyCrunky Member Posts: 3
edited 26. Mar 2014, 15:30 in Say Hello Archive
Hi all,

I'm Lisa (32) from Nottingham, UK.

I was diagnosed with Psoriatic Arthritis (PSA) when I was just 13 when my middle finger on my left hand started to swell and fused in a crocked angle.

Things stayed that way until my 2nd and 3rd daughter when shortly after my knees started to swell like balloons. I was in utter agony and the doctors wouldn't come to my home because then I wasn't classified as disabled. I remember that short supposedly 5 minute walk for normal people took me an hour. I sobbed the entire way and got some strange looks to say the least. When I got to the docs he was shocked to see how bad I was and asked why they (the doctors surgery) didn't send a doctor to my home! LOL :roll: He drained my knees and took bloods to check for [rheumatoid] arthritis. Came back negative so was sent away. More complaining later and more bloods later, again was sent away. So I saw a different doctor and mentioned that I was diagnosed with PSA when I was 13 and was finally referred to the hospital.

After that, things went downhill extremely fast. I lost all mobility within such a short period of time which caused depression also since I led an active life and owned horses and had young children to care for.

My husband at the time, had to give up work and I now had arthritis in most joints in my body. I claimed disability, but wasn't on medium care therefore, by law, I could't get on the correct benefits and we almost lost our home due to our finances being non-existent. I appealed the benefits and was refused twice. The benefits agency stated that I my partner should work and I should wear nappies which was completely and utterly wrong to say the least. I went to the citizens advice and made the advisor cry as she couldn't believe everything I was going through and stated that, by law a mother has a right to care for her children and the benefits agency stating I should sit down all day and soil myself whilst being mentally stable wasn't classified as caring. She helped me set up the appeals and an appeals date was set. Unfortunately, the date got moved back by over 4 months which was unbearable as a family of 5 we were most definitely scraping an empty barrel!

After the appeals trial, I was awarded middle rate care and high rate mobility, and also went on a lot of medications from the hospital. Things continued to get worse with the arthritis and due to the long time it took to get a proper diagnosis and proper medications, unfortunately the damage set in.

Today, I'm on a cocktail of medication that apparently works due to my markers coming down to an acceptable level, but because of the damage all over my body, I'm just in constant pain 24/7. The medication affects me in strange ways, I'm permanently tired, cannot think straight a lot of the time.

I'm on:
  • Methotrexate (injection),
  • Enbrel (injection),
  • BuTrans Norphine patches,
  • Dihydrocondiene painkillers
  • Diclofennac anti-inflammitory painkillers,
  • Gastro resistance drugs,
  • Folic acid and more.

I have arthritis in (might be better to list where I don't have it!! :lol: )
  • Left base of thumb,
  • Left index finger (fused in a right angle),
  • Left middle finger,
  • Left hand joint (joint in the hand at the bottom of middle finger)
  • Right thumb (fused in a weird angle),
  • Right index finger (fused straight),
  • Right hand joint (joint in the hand at the bottom of index finger),
  • Left and right wrists,
  • Right elbow,
  • Right shoulder (weirdly sticks out),
  • Neck (crunches when I move my head),
  • Top and bottom of back,
  • Both hips,
  • Both knees,
  • Right ankle,
  • Right big toe (fused straight).

My partner's mother has just been diagnosed with PSA also and strangely enough hers started in her knees and has spread pretty much in the same way as mine did. Her arthritis took 10 months to correctly diagnose too, has anyone else had the same issue getting diagnosed for PSA? The doctors it seems do not look our for it here.

My children are now 13, 10 and 9. I don't get out much so I like to bake sweet treats and desserts. In fact, I have a blog if anyone is interested? I also like to machine sew too.

So, that's me. I'm looking forward to meeting new people with the same or similar issues. Thank you for reading. :)

Comments

  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    Hello Funky Crunky and welcome to the forum. Mine is essentially RA but with the free added bonus of OA as DMARDS weren't aroundwhen I was first diagnosed back in 1961. I have it in virtually all my joints too though knees amd hips have been replaced.

    That's a hefty lot of pain relief! I'm on a couple of DMARDS but I try to keep my cocodamol to the mimimum. Right now I'm staying with my son for a month so, what with neglecting many of my regular exercises :oops: plus having to sit on soft chairs that don't support me properly, my mimimum is temporarily, a bit different :lol:

    I hope you'll enjoy being with us. Please join in wherever you wish. Most people hang out on Living With Arthritis and Chit Chat.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello! My PsA began in my left knee in April 1997. By the time anyone got around to doing anything about it (my then GP kept telling me it would sort itself out, it was the physios from our local (then Premier League) footy club who referred me to hospital and I then lost another year being bounced between rheumatology, orthopaedics and rheumatology again. I began taking sulphasalazine in February 2002 but it wasn't until October 2006 that the label PsA was attached (it replaced the umbrella title of an inflammatory arthritis) and the meds remained the same. So, here I am nearly eighteen years on and in a total mess. :lol: I have PsA in around 37 joints and some of those also have OA, most noticeably in both ankles, both knees and my right hip. I am still on sulph and also inject meth and humira. The latter give me lovely blood results but the rest of me doesn't notice any difference. No matter.

    I claim DLA (now called PIP) but have never bothered applying for anything else. I am very fortunate in that my husband can afford to support me (albeit not in the way I would like, a new diamond ring every week isn't that much to ask, is it? :wink: ). We don't have children (a deliberate choice) so it's just the two of us. I'm managing to do less and less over longer periods of time but that is the nature of the beast - I like to save my limited energies for the things I enjoy. Like Sticky I keep the pain relief to a minimum, currently it's between four - six 30/500 cocos per day because nothing deals adequately with the pain so I might as well get on with it (I'm up to six because I had a fall a couple of weeks ago, landed heavily on my right knee and bent it far further than it likes). I also prefer to leave an escape lane for the stronger meds when things go mammaries-upwards. I use a rollator when out and about and, during the rougher times, a stick or my crutches indoors.

    There's another lady on here who lives in Nottingham - I hope she spots your post. We're a supportive bunch because we all understand the difficulties we face and I look forward to seeing your name here and there around the boards. I wish you well. DD
  • barbara12
    barbara12 Member Posts: 21,254
    edited 30. Nov -1, 00:00
    Hello FunkyCrunky
    Sorry Im late seeing this, but goodness me what a story,I thought people on here had been made to jump through hoops but it is agonizing reading your story.
    I'm so glad to read things came together for your DLA...but sorry to see all the meds you are on and the extent of the damage to your joints..I think maybe you can offer us some advice..but I am glad you have joined us..it will be good for you to talk to people that understand..I do hope to see you around the forum ..x

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