Hello

PrincessCupcake
PrincessCupcake Member Posts: 10
edited 29. Jul 2019, 10:19 in Say Hello
Just want to hi to everyone. I'm a new member.

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hello and welcome PrincessCupcake to Versus Arthritis Community Forum

    Sorry to read of your problem with arthritis, it's always good to welcome new forum users, would you like to tell us a little about yourself.

    John
  • stickywicket
    stickywicket Member Posts: 26,766
    edited 30. Nov -1, 00:00
    Hi back :D

    Could you tell us a bit about yourself? I have RA and OA. Currently reasonably well controlled. How about you?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I presume you have some form of arthritis, I have psoriatic and osteoarthritis. DD
  • PrincessCupcake
    PrincessCupcake Member Posts: 10
    edited 30. Nov -1, 00:00
    Hi, and thank you for your replies. At the minute i'm really struggling. About 8 months ago i started with really bad pain in my knee and it had swollen to double its normal size. When walking i was in excruciating pain, and in the mornings it was horrendous to walk on. I went to my GP who sent me for an xray and sent a referral to a consultant. The consultant sent me for an MRI which came back with Osteoarthritis. The consultant said there was nothing he could do, I am too young at 56, but i was still in pain and the swelling hadn't gone down, eventually he gave a steroid injection - this eased it for about 3 days and then i was to square one. I went back to my GP who sent a referral through for physio and have been going there since May - with no benefit. About 3 months ago when I was noticing that my hip, wrists and hands were really painful in the morning as well as my knee and it wasn't easing up until well into the afternoon (if it eased up at all). I went back to my GP who said it could be Rheumatoid Arthritis or Fibromyalga, so i had blood tests. When i went back for the results she said that the blood test were clear it wasn't Rheumatoid Arthritis, so basically that is it. I am taking on average about 7-8 Dihydrocodeine 30mg a day and there are days when it is so bad they don't touch the pain. I have recently noticed that my thumb joint is turning outward. So I am thinking it Rheumatoid Arthritis as all my symptoms are pointing to it. I think i need to go back to GP, because I can't take this much more and i don't want to be taking all those pain killers. So that is why i joined this forum as I am sure many of you will be going through something similar. thank you for reading.
  • stickywicket
    stickywicket Member Posts: 26,766
    edited 30. Nov -1, 00:00
    I'm sorry you're in so much pain. I've had RA and OA for many years so I can empathise.

    Could you explain why you are so sure you have RA when both x-rays, MRI and bloods say OA? Have a read here https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/
    There are lots of autoimmune forms of arthritis. RA is just the most common one. Some are sero-negative so blood tests alone are not conclusive. but MRIs are usually a good guideline. Do any family members have autoimmune diseases? Unfortunately, OA can also be quite extensive and anyone 'in the medical know' can tell OA damage from RA damage.

    You've clearly persevered with the physio. I wonder what you were hoping from it. I find it essential to 'keep me going' but it won't cure anything. Certainly not damage done. But it does help to slow things down.

    You say the DF118s (di-hydrocodeine) sometimes don't touch the pain. Unfortunately, the more pain relief we take, the more we need to take to keep where we are. I take the absolute minimum and try to use physio and distraction as my main weapons. Diet, a sensible weight and no smoking are also essentials.

    You might find it hard to get another referral to a rheumatologist when all the signs are that you don't have an autoimmune arthritis but I think it's a good plan to see your GP and have a discussion about your problems, the scan and blood results and where you go from here. Good luck
  • Jackie47
    Jackie47 Member Posts: 108
    edited 30. Nov -1, 00:00
    Hi. Sorry you are suffering. I am having xrays today. Knee and hip. Already have had one hip replacement. Erosive sero positive RA, OA and Fibromyalgia. My friend had a knee replacement just before her 50th birthday as her quality of life due to the pain was pretty bad. If it was me i would want a second opinion. I live in the UK.
  • PrincessCupcake
    PrincessCupcake Member Posts: 10
    edited 30. Nov -1, 00:00
    Thank you for your replies.

    I've read the information you suggested and wasn't aware of all the different types of arthritis, my markers were slightly raised which the GP said the level was ok. I haven't actually seen a rheumatologist yet. The consultant i saw was orthopedic. I have been having physio as the consultant suggested and still go and also I have had 2 steroid injections into my knee which haven't helped.

    I am going to go back to see my GP to try and get to the bottom of all this. Thank you for taking the time to reply.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I began with an auto-immune inflammatory arthritis back in 1997 when I was 37 which was eventually diagnosed in 2006 as psoriatic arthritis. At some point osteoarthritis began which was officially diagnosed in 2011, in my case caused by the other kind. Some joints have one, and the other and others both. None of the meds I take reduce the pain to any significant level and never have because it's the wrong kind of pain: arthritis is a chronic, permanent condition causing chronic, permanent pain unlike the temporary nonsense caused by a headache or a rotten tooth.

    Pain is demoralising, frightening and frustrating. Pain can stop us doing things we want and lead to social isolation. I began with one affected joint, now it's around forty so pain is my constant companion. I tried the strong stuff but, as that took me away from the pain rendering me useless for anything else, I decided it wasn't the answer. I take four 30/500 cocodamol per day which dulls enough of the sharper edges to allow me to get on. I use distraction techniques to stop my paying attention to it, I exercise suitably and gently to strengthen my muscles and improve my physical stamina and I rest as much as I can.

    Over the years I have changed the way I do things e.g. I realised that peeling veg or doing the ironing does not have to done standing up. I have changed household equipment to lighter and easier to manage: both vacuums are cordless and my iron is a steam generator. I have used walking aids since 2002 which has helped me no end. Arthritis has an ABC - adjust, believe, compromise. Having both kinds all over the shop means mine is never going to go away, I am never going to stop being in pain, even if I have joints replaced life won't change enough in quality so what's the point? There are between 8.5 and 10 million arthritics in the UK, the majority having OA. Its ubiquity works against it. DD
  • PrincessCupcake
    PrincessCupcake Member Posts: 10
    edited 30. Nov -1, 00:00
    Thank you for your reply 'dreamdaisy'. I have found it interesting in how you have adapted things to make life easier. I need to look into the 'distraction techniques' you and someone else mentioned. It sounds as though this works for a lot of people and using ABC is a good way to look at things. Thank you
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I began the ABC when I was eight so I have had years of practice. :roll: I didn't realise I was doing it until a year or so ago when I invented it the phrase to explain living with arthritis to another newbie. Iwas born with eczema and developed severe asthma when I was seven: both auto-immune inflammatory conditions, both the genetic inheritance from my mother's side of the family. Father's contribution is the psoriasis (of which I have very little but the joint damage fits the PsA criteria). When I was young inhalers and steroid creams had not been invented so life was hard (and nearly ended on three occasions by the asthma). There are around three hundred auto-immune inflammatory conditions, including the various forms of arthritis, but not osteoarthritis; that is a different beast and, to my way of thinking, easier to live with as it is more predictable. I can say that as I have a creaky foot in both camps.

    My favourite distraction techniques are reading, watching TV, doing puzzles of all kinds, planning projects around the house (and occasionally executing them), chatting to friends, anything which means I am not sitting there comparing what hurts the most. Try it yourself: set a timer for 30 seconds and sit focusing on the pain. Set it again and this time plan how you would spend a million. I feel confident that the first 30 seconds will crawl and the pain will seem to be more intense, the second set will fly and the pain appeared diminished. DD
  • stickywicket
    stickywicket Member Posts: 26,766
    edited 30. Nov -1, 00:00
    I'm not sure that it's a matter of not seeing a rheumatologist yet. The scans indicate osteo and osteo is usually dealt with by GPs until surgery is needed. Rheumatologists deal with inflammatory forms of arthritis.

    I think seeing your GP is the way forward. Please let us know how you get on.
  • PrincessCupcake
    PrincessCupcake Member Posts: 10
    edited 30. Nov -1, 00:00
    Thank you stickywicket and dreamdaisy.

    I've managed to get in to see GP on Friday so will let you know.

    I will certainly try as you suggested the distraction technique. I'll keep you posted :)

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