When was your diagnosis - How did you feel?

2

Comments

  • PeterJ
    PeterJ Administrator Posts: 872

    Hello @UneJ and welcome to the community. We are a friendly and supportive group and I hope that that will be your experience as well.

    I understand that you have arthritis in your right shoulder and knee and both feet. Have you had a look at our website? If contains a lot of information and useful hints and tips. As examples I've put a couple of links below which you may find of interest.

    Please do keep posting and let us know how you are getting on, and I am sure that others will connect with you to share their thoughts and experiences as well.

    With very best wishes

    Peter (moderator)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @UneJ and welcome to the Online Community.

    You report strong pain in your shoulder, knee and feet. Can you add a little more about your arthritis and what medical treatment you are getting?

    Here are a couple of links that may help:

    Do join in across the Community, call in for a chat and say how you are getting on. You will be most welcome.

    Best wishes

    Brynmor

  • JaneJ
    JaneJ Member Posts: 2

    Hi,

    Finally got a diagnosis of PsA this week after 10 years of trying to tell my gp there was something wrong! My psoriasis is minimal and used to be in remission quite a lot of the time so was perhaps missed, and I got so disheartened by being told my issues were “normal for my age”, “just wear and tear” , “we all start to get a bit stiff as we get older” that I gave up trying and managed it myself for many years. Knowing what is behind why I have felt like this for so long is just such a relief!

  • VikkiB
    VikkiB Member Posts: 3

    got diagnosed a couple of weeks ago after xrays on both knees ..this started over 12 months ago when walking and a random stabbing pain ..got so bad i could barely put weight on it.. trip to a+e during lockdown as was in agony and was sent away having been told that it was fluid on the knee ..hospital wouldnt drain nor would the gp. Spent most of that following 12 months trying to get an appt as it had got to the point i could barely walk.. fast forward to the results of the xray and am devastated as been led to believe that this would eventually get better in time but in actual fact now its just gonna get worse x

  • anneb82
    anneb82 Member Posts: 317

    Hello @VikkiB

    Welcome to the online community and thank you for joining us.

    So you have recently been diagnosed after having xrays on both knees. However your journey started over 12 months ago with random stabbing pains which led you to go to A&E due to not being able to put weight on your joints. You were told it was fluid on your knees and the hospital nor the GP would drain it. You spent the next 12 months trying to get an appointment. You are devastated with the results of the xray as you were led to believe that your symptoms would eventually get better in time but it has actually gotten worse.

    It sounds like you have really been put through it over the last 12 months and its understandable that you feel so devastated with you diagnosis. It can be a shock and the uncertainty as to how you will be effected over the years to come can be very worrying. However, medicine has come a long way and we are here to offer support in any way that we can.

    If you feel you would like to talk to someone then I would recommend our helpline which is open Monday to Friday. The details are below.

    Ive also included a couple of links which I think you may find of interest and could be of help to you.

    I hope these are of help to you. Please do let us know how you are getting on and do keep posting and getting involved.

    Take care

    Anne (Moderator)

  • VikkiB
    VikkiB Member Posts: 3

    thanks so much for accepting me into this .. im hoping to learn more about this condition and the things that can help and also where possible be able to assist others x

  • Linnyloo
    Linnyloo Member Posts: 3

    H I’m new and I have left knee osteoarthritis and my right hip I struggle I used to walk for hour I’d get up at 5 leave at 6 am I’m finding it very hard to even get up can’t sleep at night I have thyroid disease which I live with I have menopause which I’ve had since my 30s I’m now 58 I get back pain too and I am a wee bit overweight I cannot walk when I go out shopping at the centre it’s upsetting me that I’m not as mobile as I was last year it’s getting worse went to see my dr but the don’t do anything only gave me some excercises to do I don’t know what to do but I’m in a lot of pain I’m one that hates taking tablets so I suffer the pain and I have took one ibuprofen but doesn’t do anything when I lie down my legs throb and burn I have to massage but my hands are aching hate this feeling anyone else feel the same ? I have tried t Gr. Some mornings for my walk as I’m putting on weight and my legs hurt I need to excercise but it’s hurting me I’m fed up now. Don’t want to go out s I’m in so much pain I’m scared to go to the E& A. Hospital I’m scared I don’t ever want an opperation if I can avoid cannot even get up my stars or down them as I have to hold on I’m in pain crawling upstairs too I don’t want to have any one running round doing things for me can’t mange garden like I used too as the pain is there I hide it but so fed up what can I do ? What’s the best advice anyone can give me as my drs just don’t bother

  • PeterJ
    PeterJ Administrator Posts: 872

    Hello @Linnyloo and welcome to the community. We are a friendly and supportive group and I hope that that will be your experience as well.

    I understand that you have osteoarthritis in your left knee and right hip and are looking for some advice. I understand that you haven't had much luck with the GP but they are the only ones who can get you medication or a referral for help, so keep trying them. In the meantime please do have a look at our website as it has a lot of useful information that might be of interest. To help I've put a couple of links in below.

    and more generally

    Please do keep posting and let us know how you are getting on and I am sure that others will connect with you to share their thoughts and experiences as well.

    With very best wishes

    Peter

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Joon
    Joon Member Posts: 6

    Hello my name is Joon I am 71.Last October 2021 I was diagnosed with RA after wrist and toe pains. Was on Methotrexate tablets for 3 months but now on injection once a week followed by 1 folic acid tablet. The injections are so much better for me after the tablets gave me horrible stomach problems. I have got it into my head now that I have RA and got to live with it, change my diet from food causing inflammation just researched the Internet ect. I also went back to the gym and go into the sauna 4 times a week, shower, then go into the cold pool to cool down then back into the sauna as a hot and cold treatment. I have found this so beneficial to me and helps so much, apart from feeling sore in the mornings when I get up I am coping with RA as best I can.

  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @Joon welcome to the Online Community.

    I understand you have a recent diagnosis of rheumatoid arthritis and are on a course of methotrexate to help manage pain.

    Accepting a change in your life is really difficult but you have come to the right place, as you are not alone in facing these changes.

    Our web site has some great information regarding food and maintaining a good diet:

    and there is an even bigger selection of information about exercise:

    with the section on Let's Move With Leon being popular.

    Do join in across the Community, ask questions and give advice and support. Do call in for a chat and say how you are getting on. You will be most welcome.

    All best wishes

    Brynmor

  • I was told I had degenerative arthritis 20 years ago. Lower skull middle back and lower back plus discs have crumbled a bit. Had 2 spine injections 8 years ago.

    Said they won't operate as I'm not in enough pain? I have a good pain threshold and it prob 6 out of 10 every day on average. Maybe I should rub onions in my eyes🤔

    Had no checkup or scans since. Seems like they just want me to live with it. Doc wrote letter years ago and no reply.

    Average pain every day. Don't get any benefits at all. They said I can still work.

    Fed up with Spain.

  • Listy44
    Listy44 Member Posts: 3

    I was first diagnosed with pseudo gout in 2020, I was given steroids (30mg per day). I also had pain relief in the form of codeine. I was then given hydro chloroquine which resulted in Vasculitus on my legs. Two years on and I still bear the scars! I continued to see my rheumatologist who suggested that my steroids should start to reduce. It’s been a long process and at the beginning of January 2022 I had reduced to 1mg per day. I was so pleased but unfortunately as predicted arthritis kicked in again! I have now been taking steroids for 20 months, I know that these are not good for me long term. I have reduced to 6 mg currently but have been told I may need to take a low dose continually. I have just returned from Tenerife and found that the warmer climate helped, no aches or pains whilst I was away. However I have been home four days and can already feel my joints stiffening up. It’s such a debilitating condition. I wish that there was a treatment other than steroids!

  • Brynmor
    Brynmor Member Posts: 1,755

    Hi @Listy44 welcome to the Online Community.

    I understand you have a form of gout for the last 2 years and are taking a course of steroids to help manage pain. Many people share your discovery that warmer climates help with arthritic pains and this has been a source of recent research that you may find interesting:

    Do join in across the Community. You will be most welcome.

  • Carryl
    Carryl Member Posts: 4

    I was first diagnosed with OA in multiple joints just over 4yr ago..spine..right hip..knees..ankles..feet..big toes..wrists hands fingers and now have tendonitis in shoulders especially left shoulder..so my physio said on Friday...this causes awful pain and poor sleep..nothing new there! I was ok at first with diagnosis but with each joint after developing it...it took some accepting...especially as I was always so active. Glad I found this group.

  • @Listy44 hi there

    I noted that you took hydroxychloroquine and it resulted in vasculitis, I started this drug about a month ago. I have been newly diagnosed with connective tissue disease (autoimmune disease) and that this drug is to modify my immune system.

    did you have to have regular blood tests or anything? I know it can have some nasty side affects. Touch wood - so far I have been ok apart from feeling a bit sick but have noticed a lot of head aches. Did you get head aches while taking this drug? My consultant has told me that this is one of the safest drugs to take but I’m a little sceptical.

    xxxx

  • Joon
    Joon Member Posts: 6

    Hello my name is Joon I am 71.Last October 2021 I was diagnosed with RA after wrist and toe pains. Was on Methotrexate tablets for 3 months but now on injection once a week followed by 1 folic acid tablet. The injections are so much better for me after the tablets gave me horrible stomach problems. I have got it into my head now that I have RA and got to live with it, change my diet from food causing inflammation just researched the Internet ect. I also went back to the gym and go into the sauna 4 times a week, shower, then go into the cold pool to cool down then back into the sauna as a hot and cold treatment. I have found this so beneficial to me and helps so much, apart from feeling sore in the mornings when I get up I am coping with RA as best I can.

  • DebbieL
    DebbieL Member Posts: 63

    I had terrible back pain. Managing on over the counter painkillers through the day at work , sat at a desk. The drive home was agony and often went to bed early as in too much pain to do anything else. After a few trips to the doctors and stronger pain killers I asked the doctor why I hadn’t been examined or referred. I was 53 year and had gone from being very active to doing virtually nothing in case I made my back pain worse. The doctor asked me if I thought I had cancer or a tumour. I hadn’t til then just didn’t know why I was in so much pain! He sent me for MRI then. I phoned for my results and they said I had OA in L5 and S1. And that was it. I think if I was near a cliff I would have “chucked myself off it”! I was devastated! All I could see for the rest of my life was pain and not being able to do anything. I booked private physio and wrote an email of complaint to my GP. I immediately got an appointment with my GP. Discussed pain relief and the doctor found a combination of tablets that were right for me. I was referred and saw a physio that actually understood my problem and gave me exercises specific to my needs. He also gave me confidence to start to “live” again! Now I only take painkillers at night and do lots of activities that I would not have done for fear of hurting my back more. To me a diagnosis of OA was the end of my mobility, but with the right help and guidance it was just an adjustment and a small manageable reduction in mobility and an understanding of show to manage pain!

  • Linnyloo
    Linnyloo Member Posts: 3

    H I’m new and I have left knee osteoarthritis and my right hip I struggle I used to walk for hour I’d get up at 5 leave at 6 am I’m finding it very hard to even get up can’t sleep at night I have thyroid disease which I live with I have menopause which I’ve had since my 30s I’m now 58 I get back pain too and I am a wee bit overweight I cannot walk when I go out shopping at the centre it’s upsetting me that I’m not as mobile as I was last year it’s getting worse went to see my dr but the don’t do anything only gave me some excercises to do I don’t know what to do but I’m in a lot of pain I’m one that hates taking tablets so I suffer the pain and I have took one ibuprofen but doesn’t do anything when I lie down my legs throb and burn I have to massage but my hands are aching hate this feeling anyone else feel the same ? I have tried t Gr. Some mornings for my walk as I’m putting on weight and my legs hurt I need to excercise but it’s hurting me I’m fed up now. Don’t want to go out s I’m in so much pain I’m scared to go to the E& A. Hospital I’m scared I don’t ever want an opperation if I can avoid cannot even get up my stars or down them as I have to hold on I’m in pain crawling upstairs too I don’t want to have any one running round doing things for me can’t mange garden like I used too as the pain is there I hide it but so fed up what can I do ? What’s the best advice anyone can give me as my drs just don ihave had this now for

  • Linnyloo
    Linnyloo Member Posts: 3

    Has anyone else had these symptoms ? How do you cope ?

  • Hi @Linnyloo ,

    Thank you for posting on our community forum, I am so sorry to hear how your pain is impacting on your life so much. Dealing with a long-term condition can be difficult, pain can also be made worse though periods of emotional stress which can have such an impact on our condition including arthritis.

    You mentioned that you have osteoarthritis in your knee. We have some information on our website that may be helpful to you which I will post below.

    We are also here to help and support you in managing your condition so if at any point it would help you to talk things through informally and in confidence to one of our Helpline advisors about how you are feeling you are more than welcome to call our Free Helpline on 0800 5200 520 weekdays 9am – 6pm.

    We will also be here for you on our online community. You've come to the right place and we hope our community can support you.

    Claudine

  • mrlambert
    mrlambert Member Posts: 4

    this is my first time on a site like this. i was diagnosed rhumatoid arthritis age 4 back then i spent 1half years in hospital getting different treatments im now 40 and now getting told its psoratic

    If you can get any help or even a direction on what to do jump at it as im now at over 15 different doctors and over 6 different specialists which all have a different way of treatments/helping. hundreds and hundreds of appointments and different treatments later im starting to think im always going to be in this pain its a life i wouldnt wish on anybody so if you find the help/treatment which works keep it

  • Ajg2022
    Ajg2022 Member Posts: 2

    I was a bit shocked. I know I’m not as young as many but I have been really fortunate to have not had allergies or illness throughout my life, so found it hard to accept this condition. The pain management has taken a bit of getting used to and I have now ditched neproxin and it’s all it’s toxicities and am seeking more healthy alternatives.

  • PeterJ
    PeterJ Administrator Posts: 872

    Hello @Ajg2022 and welcome to the community. We are a friendly and supportive group and I hope that you will find that as well.

    I understand that you are looking at alternatives for pain management. You do not say how arthritis is affecting you and normally we would look to provide some information on that, e.g. knee or hip. However I would recommend that you have a look at our website and use the search function. As examples see the links below which may be of help.

    Please do keep posting and let us know how you are getting on and if you would like to share more information then I am sure others will connect with you to share their thoughts and experiences as well

    With very best wishes

    Peter

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Ajg2022
    Ajg2022 Member Posts: 2

    Thank you. I have bone growths on my fingers and base of my thumbs. I have pains that range from my fingers to my wrists and elbows and then also in my feet. I now just accept something will hurt and hopefully it will not last too long. The GP thought I had Lupus but now they think OA. Still waiting for a treatment plan (first appointment was 3 months ago). No one has explained my diagnosis to me, I’ve just pieced together notes that they’ve published online (on mychart). Still haven’t had any feedback from the x rays of my hands and hips, which I think will be telling. Really looking forward to learning a lot from this group.

  • PeterJ
    PeterJ Administrator Posts: 872

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm