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Hi, I'm new here and just been diagnosed...

Posted , 11 users are following.

Zita2323
Zita2323

hello everyone, my name is Zita and I'm 40 years old, mum to 2 girls 16 & 11. I just been diagnosed with psoriatic arthritis and I'm so scared and confused, I'm looking for people in the same boat to help me understand what I'm going through. I have suffered with scalp psoriasis for about 10 years. For about a year I had the odd pain here and there, but nothing I thought was worth going to the doctors about, but 6 months ago my knee started to hurt more regularly but I still put it down to getting old. One night I woke up in excruciating pain on my knee, could not move it at all, took a couple of hours with a bag of frozen peas to ease the pain and after taking painkillers the pain went and I carried on with my life. Just under 2 months ago that same pain came back but not just my knee, my shoulder, my elbow and my neck were affected too. I felt like I was paralysed by pain and had to be practically carried to the GP. That was the first time I ever heard of PA...I didn't even know it existed. My GP suspected it and sent me to loads of blood tests, and prescribed a load of tablets. A week later the pain was not easing so back to the GP and this time he gave me stronger co codamol and the pain started to get better. Another week and the blood tests results came back and showed inflammation, very low vit D and folic acid, so GP gave me supplements and decided to give me a 3 vial steroid injection, which he was hopeful could relieve me of pain for a month, while I was being referred to the rheumatologist. I was pain free for 3 days and then it came back with a vengeance. Back on the co codamol and naproxen but the pain was easing just a bit, I couldn't sleep as I any position made something hurt. GP asked for an urgent refferal, but that got lost and despite me trying to get things moving, nothing was happening fast enough so I went private, got an appointment within 2 days and a diagnosis. I started methotrexate 2 weeks ago, which makes me very sick and  diarrhoea for 3 days, then it settles. Still on co codamol for pain as I refused the steroids the rheumy wanted to prescribe. My life has been turned upside down, almost every day I wake up with different joints hurting. I feel like the pain is eating me away, it's so disheartening when I can't even prepare my child's lunch box because my hands won't allow it. I work through an agency and they are on the verge of getting rid of me because I have taken the odd day off when the pain is just too much. I have been on anti depressants for years and I feel my depression getting worse, I don't want to leave the house or see anyone because I feel so so low. Will it ever get better? Any advice is welcome xx

3 likes, 32 replies

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  • Littlelorry
    Littlelorry Zita2323

    Posted

    Zita - so sorry you are in so much pain. There are many medications that can help you so don't lose hope. There are hundreds of people in the same predicament as you and sometimes it is helpful and reassuring to both converse with them and read their stories and look at the different things that they did to help alleviate the pain or just become more comfortable.  I would suggest that you go on the 'National Psoriasis Foundation' website and then key in 'Inspire com' and then search for psoriatic arthritis and join this site to get daily updates of current issues and also be able to access older posts. Knowledge is power. Take care. 
  • robert271163
    robert271163 Zita2323

    Posted

    Hi Zita 

    There are lots of different treatments for PA Methotrexate being one of them, I take it that they have also prescribed Folic Acid, I am also on  sulfasalazine  and for the pain Co codomol and Tramadol, It took 2 years by the time they diagnosed me by which time most of the damage was done so its now a case of slowing it down and controlling it. Like most people you will find because there are so many different medications and treatments for this condition with different  side effects which effects different people in different ways. I have good and bad days but the good days are few. My main mistake is because of the painkillers working i over do it and feel the effects later that day or the day after. So finding what works for you is trial and error and sadly most of the medication takes a while to start working before you know if it is going to work for you, all i can say is stick with the medication as it does take some time for them to work 

    • Zita2323
      Zita2323 robert271163

      Posted

      Thanks Robert, I think I'm finding very difficult coming to terms with it. I can relate to what you are saying about over doing it, when I feel ok I start  catching up on all the housework I haven't been able to do and then it all comes crashing down on me. I have always been a very independent person and not being able to do stuff drives me mad. 
    • Zita2323
      Zita2323 robert271163

      Posted

      And yes I am taking folic acid apart from the day I take methotrexate. 
    • robert271163
      robert271163 Zita2323

      Posted

      unfortunatly you cant just do that i know where your coming from but it just doesnt work like that, the condition tells you what you can and cant do. annoying as it is. 
  • Aristotle13
    Aristotle13 Zita2323

    Posted

    Hi, you have my deepest sympathy for your suffering for such an evil disease.  I've done a little reading about the condition and it seems that your doctors have covered most of the normal treatments. There is an interesting explanation of the disease' progression on the NHS Choices website (use google) but afraid that I and most other patient members are unlikely to be able to offer more than sympathetic support. Sorry not to be more able to help.
    • Zita2323
      Zita2323 Aristotle13

      Posted

      Hi, sympathetic support is very welcome. Just being able to talk to people who are dealing with the same disease is reassuring. 
    • jane_58649
      jane_58649 Zita2323

      Posted

      Hi Zita firstly you have

      My sympathy it's awful I know but this is probably a flare and it will settle. I wAs like you 14 years ago and then it all went away until the last three years when I went through a stressful period and the menopause . So today I am suffering with a froZen shoulder and have also had uveitis all psoriatic I am sure. However I have had success with accupuncture and High doses of vitamin d3 and vitamin k along with huge amount of fish oils. Anything is worth a try I Haven't taken up the rheumatology route as I don't want to taken the drugs at the moment. However when things get unbearable I am sure I will go down that route. It is such a strange disease but for me when the flare up has gone I am back to normal completely does that happen to anybody else ? Hang on in there and look forward to the flare settling it will for sure xx

    • l1965
      l1965 jane_58649

      Posted

      Hi Jane,

      I just register after reading your post. I have the same path flares and then normality except that this time it's worst and long !!! P quite in existent I dealt with it ( healthy food and heavy exercise about two hours daily )

    • l1965
      l1965 Zita2323

      Posted

      Hi zita,

      I have this for five years it steadily getting worst however and this is proven about 25 to 35% of pain management is exercising!! Heavily in hours I mean! I go to the gym swimming, Pilates, yoga every day it makes a huge huge difference!!! Do not underestimate it! You get pain relief, healthy weight, range of movement, super mood . For the rest I just take some painkillers but soon I think I will have to find something else !! Iam 50, male. Good luck to you

    • Zita2323
      Zita2323 jane_58649

      Posted

      Thank you Jane. I think you are very brave to deal with this without going rheumatology route. I'm normally quite a proactive person and I will try different things, like you said anything is worth a try, I'm just feeling really low at the moment and finding it very difficult to come to terms with it all. xx
    • Zita2323
      Zita2323 l1965

      Posted

      Hi, wow I can't believe you do all that excercise, eek. Do you do it even when you are in pain? I find going up the stairs difficult, I feel such a whimp. 
    • l1965
      l1965 Zita2323

      Posted

      Well the problem with all these conditions is that we hear pain from other people but we cant relate to the real level of it correct? So yes when I have my level of pain I swim and if I feel better I do all the rest . Btw another trick I am at exactly the weight I should and even thinner, it helps big time !!!! Psa is hard but there is worst and worst it's not a sentence to death! It's a new way of life !! No alcohol,good sleep, exercise, healthy antiinflamatory food, yoga, no coffee, super weight !!! That's the good part of it 😀😀 what about your p? Mine when it started five years ago was terrible inverse mainly then with all the above it subsidies and is at the point to disappear!!! Change change change distract distract the way you see things and even if you don't believe now you will feel better!!
    • Zita2323
      Zita2323 l1965

      Posted

      I am only slightly over my ideal weight, I don't drink alcohol, I like to think I have a healthy diet, plenty of fruit & veg and none of these processed or ready meals and my job involves moving around and lifting so maybe I'm half way there? My p has quite aggressive over the years. I have tried all sorts of lotions and potions, prescribed and natural, nothing really works. At the moment I'm using Dovobet and Betacap, but if I use it for too long it seems to lose its effectiveness, so I have to give it a break. rolleyes
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