Hi. I have recently been diagnosed with RA...

SamuelCoe
SamuelCoe Member Posts: 9
edited 12. Aug 2015, 16:39 in Say Hello Archive
Hi,

I'm a 27 year old who has a history of shoulder surgeries; I had Key Hole surgery six years ago after frequent dislocations and it was a huge success. I was very strong and I continued playing contact sports and doing physical labour.

Unfortunately my shoulder came out again a few years ago playing football and I discussed my options with my consultant. He suggested having another shoulder surgery which would involve scraping some of my shoulder bone off and inserting screws. Hoping of repeat success, I agreed to have it done.

Fast forward a year and a half and I've not regained most of my mobility and my left shoulder and knee have started to feel very venerable. I only found out after my surgery that there was a risk of getting RA from it...

I'm a bit upset that my consultant did not explain this before I went ahead. Is this something he should have done or was I being stupid for going ahead without doing any of my own research? (or both!)

Also did my consultant do anything wrong or was this inevitable whoever performed it? I may well have got arthritis in the future anyway but most people I talk to first feel symptoms in their late 40s :(.

I hope someone can give me advice, this has turned my whole life upside down.

Comments

  • moderator
    moderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Hi Samuel

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    It is a little quiet being the weekend, but I'm sure that someone will be along shortly to help.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    Do read and post across the different topics that you will find here.
    All best wishes
    Mod B
  • Saltdog
    Saltdog Member Posts: 30
    edited 30. Nov -1, 00:00
    Hi Samuel,

    I'm in a similar boat to yourself although I've not had a proper diagnosis yet. I'm seeing the rheumatologist in a couple of weeks though so maybe then.

    I've had surgery in both shoulders within the last year and although they should both be healed, there's still a lot of pain and stiffness. I'd put it down to slow recovery but other bits of me are getting sore too. You can get my whole story on the post I wrote here yesterday.

    Do you or can you still exercise? I'm finding it really lessens the pain and stiffness when I do a spinning session (I'm a keen cyclist). Also, since you've been diagnosed, I'm assuming you'll start getting the drugs to help? From the great advice I've had on here so far it sounds as though they can help a lot.

    I wouldn't spend any time dwelling on the reasons for your condition. While I'm not as young as you, I know how you feel. Until recently I thought arthritis was something only older people got. I'm only 38 so didn't think I fitted in to that category yet. The drugs now sound as though they're much better than ever before so I'm hopeful I'll still be able to do the things I enjoy.

    Anyway, welcome to the boards but I'm sorry you had to come. I'm thinking for myself at least that this is the best place to be.

    Kev
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Hello Samuel. I'm sorry you've had so many shoulder problems which required surgery. It sounds as if you've persevered with your sports but I guess that's become rather difficult now.

    I confess I've never heard of surgery resulting in RA. Are you sure you meant RA – Rheumatoid Arthritis? If you actually meant OA (Osteo Arthritis) it's common for it to set in at the site of an old injury. It seems you've had several dislocations there so possibly it was those that caused arthritis though I guess it could also come as a result of the surgery. I don't think I've heard of this happening.

    Arthritis Research UK have a list of potential causes of arthritis which you might find helpful http://tinyurl.com/qx4t96n .

    As for most people feeling their first symptoms in their late 40s, many, though by no means all, people who get OA first become aware of it in their late 40s but the auto-immune types (eg RA) strike at any age, including small children.

    I'm afraid this doesn't help much with your question but I think it would be hard to prove that the surgery caused your arthritis given that you had a very unstable shoulder joint to begin with.

    I hope that, like all of us, you can learn to live with your new circumstances and maybe find new, non-contact sports to enjoy.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks for your posts guys.

    I almost certainly have Rhumatoid Arthritis because the symptoms I'm experiencing are exactly what it says on the tin:

    http://www.webmd.com/rheumatoid-arthritis/tc/comparing-rheumatoid-arthritis-and-osteoarthritis-topic-overview

    Both diseases are obviously awful but I would have probably preferred to have Osteoarthritis as I understand it slowly gets worse as you get older while RM hits very suddenly (which has happened to me). I haven't officially been diagnosed yet but it was suggested by a consultant when I had an Xray three months ago. I've got MRI and CT scans soon to confirm and then I can plan the next steps (meds, diet, suitable exercise, potential surgery...).

    I was a huge football player which I'm going to give up now but hopefully I can continue rollerblading as that's my passion. I hope this does not put too much strain on my knees/ankles.
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    It sounds as if you've not yet seen a rheumatologist. If you do have RA - or any other auto-immune form of arthritis, the rheumatologist is the person who can confirm the diagnosis and treat it. GPs can only give you the meds which the rheumatologist prescribes.

    OA, on the other hand, is treated by GPs with anti-inflammatories and pain relief. You don't see a rheumaologist for that.

    I think giving up footie was a wise decision. Rollerblading? Well, see how it goes. At least it's non-contact.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. Who has told you that you have RA? RA is one of the hundreds of auto-immune forms of arthritis and is triggered by an over-active immune system. In this wonderful age of the internet it is very tempting to self-diagnose but also very foolish. Your symptoms may match the classic onset but, as you don't mention seeing a rheumatologist I think you should be referred, they are the specialists in this area and only they can prescribe the required meds which are designed to suppress the immune system, thus reducing disease activity.

    OA has been regarded as having a different cause (often defined as the 'wear and tear' arthritis) but current research is also hinting at an auto-immune component. I have both an auto-immune and OA but the meds for the former don't touch the latter. Any form of arthritis can hit at any age, it cares not for age, gender, circumstances or our life plans. lease let us know how things go and ensure you get that referral! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    Hey Daisy,

    A chap who took an X-ray before a Hydrodialitation injection told me that it's likely I'll have arthritis due to the wear and tear. This initially upset me but I thought it was something I'd start to feel the symptoms of in later life (characteristics of OA)

    Only six months later and my knees, and both shoulders are in a lot of pain. I looked up my surgery online and it said there was a risk of RA and the symptoms I'm experiencing are identical to it. For the last week I've had sleepless nights from the pain and having never took painkillers before, I'm becoming dependant.

    I appreciate it has not been diagnosed yet and that's something I'm trying to arrange. I'm very certain I've got it for the reasons explained above and the fact that I went from being super strong to struggling to carry to light shopping bags and having inflamed knees from short walks.

    How long did it take you guys to see a Rheumatologist on the NHS? Getting a Hydrodialitation injection took two months :(
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    In my case it took years. I began in 1997 with a swelling left knee but my then GP was apparently unaware that inflammatory arthritis existed; she kept telling me it would sort itself out and clear off and, stupidly, I believed her. (Up until her I had been very well-served by doctors so believed what she told me.) I spent 2001 being bounced between orthopaedics and rheumatology, had an operation to remove the solidified and fresh swelling in February 2002 and began a med called sulphasalazine, but without anyone being clear about what was going on. A few months after that op the swelling returned so it was repeated the following year. It was then that I was given a tentative diagnosis of auto-immune inflammatory arthritis by the second rheumatologist I saw and began further meds. Other joints joined in and then in October 2006 I had a blast of psoriasis on my palms and soles. The medical penny finally dropped.

    This must be very distressing for you if you have been used to a reasonable level of physical health. I think the sooner you see a rheumatologist the better - he may not be able initially to rule anything in or out but at least you'll be on the right track. It may be worth starting a short diary of pain and tiredness levels, what exacerbates and what helps matters, and it is worth maintaining a low-level of regular pain relief. Pain 'killer' is a complete misnomer, we use the term 'pain dullers' on here because that is what they do, the dull the sharper edges is all. Pain affects the quality of sleep but an auto-immune tiredness is in a league of its own. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Any form of arthritis is a disturbing prospect and I can understand the urge to get a handle on it but I think you're getting a bit ahead of yourself here. No-one can diagnose RA from the internet. Rheumatologists study medicine for years and still often struggle to get a diagnosis. Besides, the internet is full of misleading and downright erroneous imformation. If you want to read up on arthritis then stick with here, Arthritis Research UK and NHS Choices. They are reliable.

    From the information you've given I can see no reason why yours should not be OA but only a doc can confirm this one way or the other. Your GP is normally the first port of call but maybe whoever ordered the scans would be your best bet. Waiting lists for rheumatologists vary depending on the hospital. From what I've read on here (I myself was diagnosed many years ago) 2 to 3 months seems about usual for a first appointment.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello again, we're a couple of weeks on now, how are things going? Have you managed to discover anything further about what is going on with you? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello again, we're a couple of weeks on now, how are things going? Have you managed to discover anything further about what is going on with you? DD


    Hey Daisy, thank you for asking. I really admire the community here.

    A blood test was conducted just over a week ago and I'm still waiting for the RA result, I'm likely to get it on Tuesday. They got the other two samples back and one confirmed that my joints were inflamed but my urine was clear (I didn't know that would show anything anyway but I was just doing as I was told!).

    It's astonishing that I feel like a 70 year old man who can hardly lift shopping bags when only two years ago I was dominating football games, cycling and thrashing huge men at arm wrestles

    My symptoms have got much worse and I was having sleepless nights every day without fail for a month due to the pain so my GP gave me stronger painkillers which has helped a bit.

    I tried so hard to keep it in but I broke down in front of him, I felt really embarrassed but it was a relief to finally tell someone how I was feeling.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    The blood test may not be conclusive so don't get your hopes up too high. I have my urine checked on a regular basis but that's because I'm taking the meds and have regular bloods. Different rheumatologists have different ideas about how to go about things, 'tis the way of the world.

    On-going pain is demoralising, debilitating and stressful. I am thankful that I can no longer remember being pain-free, that has made life much easier for me. Poor quality sleep is par for the course, pain can break through and disturb us, and that adds a further level of difficulty to an already difficult situation. Please let us know what the results show and we'll take it from there. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tedthered64
    tedthered64 Member Posts: 84
    edited 30. Nov -1, 00:00
    SamuelCoe wrote:
    dreamdaisy wrote:
    Hello again, we're a couple of weeks on now, how are things going? Have you managed to discover anything further about what is going on with you? DD


    Hey Daisy, thank you for asking. I really admire the community here.

    A blood test was conducted just over a week ago and I'm still waiting for the RA result, I'm likely to get it on Tuesday. They got the other two samples back and one confirmed that my joints were inflamed but my urine was clear (I didn't know that would show anything anyway but I was just doing as I was told!).

    It's astonishing that I feel like a 70 year old man who can hardly lift shopping bags when only two years ago I was dominating football games, cycling and thrashing huge men at arm wrestles

    My symptoms have got much worse and I was having sleepless nights every day without fail for a month due to the pain so my GP gave me stronger painkillers which has helped a bit.

    I tried so hard to keep it in but I broke down in front of him, I felt really embarrassed but it was a relief to finally tell someone how I was feeling.
    Hi,
    I have OA in nearly all joints and I must say that you're symptoms are exactly the same as mine so I wouldn't jump the gun on a self diagnosis of RA just yet.
    I am 51 and was a very active sportsman also, ex semi professional footballer, so was always prone to wear and tear, so much so that I have suffered with OA in the kness since the age of 19,
    Good luck with it anyway.
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    Daisy: what should I do if my tests for RA come back negative then? Is there any other way of diagnosing it if there's still a possibility I have it?

    Ted: I'm sorry to hear about your story at such a young age. When did you have to give up sports? (Even with friends)

    Sam
  • tedthered64
    tedthered64 Member Posts: 84
    edited 30. Nov -1, 00:00
    SamuelCoe wrote:
    Daisy: what should I do if my tests for RA come back negative then? Is there any other way of diagnosing it if there's still a possibility I have it?

    Ted: I'm sorry to hear about your story at such a young age. When did you have to give up sports? (Even with friends)

    Sam
    Hi Sam,
    Had to stop completely aged 31, although I must say it was continually going through the pain barrier including injections
    Ted
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    Are you still able to work? Sorry I know these are personal questions, you don't have to answer of course.

    Sam
  • tedthered64
    tedthered64 Member Posts: 84
    edited 30. Nov -1, 00:00
    SamuelCoe wrote:
    Are you still able to work? Sorry I know these are personal questions, you don't have to answer of course.

    Sam
    Hi,
    I am now needing a bi lateral THR, total hip replacement and the same with my knees.
    I am a professional chef and due to having to spend nearly all of the time standing, I have unfortunately had to give up my job.
    Arthritis no matter what type you have is a truly life changing illness.
    Ted
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    I was hoping to avoid technical at this stage! Right, here goes.

    Inflammatory arthritis comes in two kinds, sero-positive where rheumatoid factor is present and sero-negative where it isn't. I have a sero-negative kind which delayed my accurate diagnosis, I was initially classed as having an auto-immune inflammatory arthritis, then a few years in when my skin helpfully obliged with a bout of psoriasis the label was changed. The meds, however, remained the same.

    If your bloods are sero-negative then that does not rule out an auto-immune arthritis, but I suspect it rules out 'classic' RA - not having RA I don't know. It's worth remembering that there are around 300 kinds of auto-immune inflammatory arthritic conditions so it can be a diagnostic minefield if you don't present with the classic symptoms. This is why you cannot self-diagnose. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    I got my blood tests back today, it came back negative for RA.

    I am glad, don't get me wrong, however you've made the point Daisy that this is by no means an all-clear.

    I am seeing my GP tomorrow morning and we'll take it from there.
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    So a sero-positive problem has been ruled out but possibly not a sero-negative. You hint that your inflammation markers are up, what were those figures? Mine were routinely in the 160s and 170s which gave my game away!

    GPs know a little about a lot but they are not up to speed with the complex conditions that come under the auto-immune inflammatory arthritis umbrella - they are improving but they are not a substitute for rheumatologists. I am still unclear about whether you have been referred to rheumatology: I apologise but life is tough going at the moment on the pain and tiredness front. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SamuelCoe
    SamuelCoe Member Posts: 9
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    So a sero-positive problem has been ruled out but possibly not a sero-negative. You hint that your inflammation markers are up, what were those figures? Mine were routinely in the 160s and 170s which gave my game away!

    GPs know a little about a lot but they are not up to speed with the complex conditions that come under the auto-immune inflammatory arthritis umbrella - they are improving but they are not a substitute for rheumatologists. I am still unclear about whether you have been referred to rheumatology: I apologise but life is tough going at the moment on the pain and tiredness front. DD




    I never got the figures back unfortunately. I was only told that my vitamin D was pretty low so I'm going to take tablets for that now.

    I have been referred to a Rheumatologist, I guess it's a waiting game and I'll let you know how it goes.

    My fingers, knees and shoulders have been 'crackling' a lot, I'm guessing that's an Arthritis symptom :(
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