Readers Say Hi

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  • SeaVixon
    SeaVixon Member Posts: 12

    Thank you Anna, I might just do that ,as things are very black right now

    Thank you

    yours Sea Vixon

  • SeaVixon
    SeaVixon Member Posts: 12
    https://community.versusarthritis.org/discussion/51677/readers-say-hi

    Hi every one, I have just joined this community in the hope I can find a magic pill to counter pain . I have got Arthritis in most of my joints ,I also suffer from stenosis and spondylitis of the upper and lower spine , I also require new knees,I'm also waiting for operation on my Elbows. How ever I have been told because I also have stenosis of the Aortic valve ,plus hear disease the surgeons have refuse to operate on me .I have been on fentanyl for 6 years but that has now stopped working, I'm also allergic to morphine ,and have tried CBD oil and Turmeric, and have been through the pain clinic who offered drugs that affect the brain such as gabapentin but non have helped , I now believe the docs have given up on me, as they say they have nothing left to offer . I am at my wits end ,any suggestions will be gratefully received .

    Thank Sea vixon

  • Sharon_K
    Sharon_K Member Posts: 460

    Hi @SeaVixon

    welcome to the forums, sorry you have been having such a bad time of it. It must be incredibly frustrating to feel that the Drs have given up on you. There are a lot of members on here who will be able to share their experience of how they manage their pain with you. We also have a section on our website that you might find useful

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Pain is not an easy thing and it is something Versus Arthritis is working hard to support. We do also have a section on exercises that might help you to manage your pain here

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/exercises-to-manage-pain/

    As mentioned earlier I am sure our members will also share their experiences with you. Keep intouch and let us know how you get on

    Best Wishes

    Sharon

  • SeaVixon
    SeaVixon Member Posts: 12

    Thanks for the greeting Sharon ,it was much appreciated ,to be honest I was not going to join this forum, as I can't see how this forum can help me !.

    How ever, I must point out that In my first post , I stated I have hear disease, that of course was a mistake, and should have read ischemic heart disease, well it was late when I posted it and I was down . sorry about that .

    **** I have Just opened a letter from my consultant ,saying my appointment for April 29 has been cancelled . In the mean time, my consultant will be reviewing his list ,and will contact patients by phone, should he feel its necessary. That's one way of cutting down waiting list. I fear Covid 19 will be used as an excuse to get rid of patients from their operating, and out patents lists, once this pandemic is over ..is there no end insight to this misery now

    Regards

    Sea Vixon

  • MisterA
    MisterA Member Posts: 1

    Hi,

    Just a quick hello as I've just joined the forums.

    I have sero-negative Rheumatoid Arthritis, diagnosed about 5 years ago. My mum had very severe RA and I cared for her from the age of 18 until she passed away 10 years ago. I'm now 45 so was pretty scared when I got my diagnosis as I feared it would be as bad as my Mum's who was bed-ridden for the last serveral years of her life, but so far my path has been much less severe, I'm still able to do most things that I wish, though sometimes more slowly and with a grimace as I get going!

    I've done fund raising for Arthritis Reserach UK in the past in both the Great North Run and London Marathon, one before my diagnosis and one after, though I fear those days are over as I'm just a bit too sore and fatigued to do that any more, happy I can still go for a walk and ride a bike and that'll do nicely.

    I'm on hydroxycholriquine and methotrexate (though as I have a history of lung problems I chose to pause methotrexate in March to reduce my Covid-19 risks). Just what we needed - more complications!

    Hope everyone is coping with social distancing. Take care and stay safe.

    Andrew

  • Sharon_K
    Sharon_K Member Posts: 460

    Hi @MisterA

    welcome to the forums and thank you for sharing your experience with the community. I am glad to hear that your Theumatoid Arthritis has taken a much less severe path, long may it be so. Also wonderful to hear about your past fund raising contributions to Arthritis Research UK before it became Versus Arthritis.

    Please feel free to join it to any discussion that you feel drawn to our members here are very welcoming and supportive. I look forward to seeing you on the forums. Keep safe

    Best Wishes

    Sharon

  • Kacey
    Kacey Member Posts: 1

    Hi, I'm Kacey

    I've had arthritis for years now. some days are better than others. stress is a bad trigger for my arthritis. I have Cervical Spondylosis, Osteoarthritis and Psoriatic arthritis and take Sulfasalazine, daily to keep on top of it all.

    being stuck in doors is stressful, which is causing the proriatic arthritis to flare up more

    would like to get to know other people with similar arthritis and is there any way to control it better?


    Kacey x

  • Sharon_K
    Sharon_K Member Posts: 460

    Hi @Kacey

    welcome to the online community it is lovely to have you hear. I think many would agree that stress is a big trigger for arthritis we have a section on the website that talks about how to manage emotions here

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-well-being/

    We also have a section on complimentary therapies that can help with stress like yoga

    https://www.versusarthritis.org/about-arthritis/complementary-and-alternative-treatments/types-of-complementary-treatments/meditation-t-ai-chi-and-yoga/

    I am sure our members will also share their experiences with you

    Best Wishs

    Sharon

  • ChrisMartin
    ChrisMartin Member Posts: 2

    Hiya everyone, my first post here. Sorry in advance for the rambling.

    I have bad osteoarthritis in my right knee and very bad wear and tear, due to having my cartilage out in 1992. I have bone on bone under my kneecap because of this too, I was due a full knee replacement on the 9th April 2020 but CV19 but a stop to that. I am in constant bad, bad pain, also I am a carer for my wife who is registered disabled with chronic Lymph-oedema. The only pain med I can force out of my Drs sticky mits is Co-Codamol and 5ml oramorph 4 x daily. First thing on a morning I cannot walk and it takes about half an hour to get my knee going. Does anyone have any tips on what better pain meds I can try? I have tried CBD oil too, to no avail. If there's any recommendations I can put to my useless Dr.

    Thanks for reading Chris

  • Sharon_K
    Sharon_K Member Posts: 460

    Hi @ChrisMartin

    welcome to the online community it is lovley to have you here. Covid really does seem to have had a huge impact on life and sadly there are lots of people who have had their surgeries cancelled, whilst understandable it is very frustrating I am sure. You might like to read this information on our website

    https://www.versusarthritis.org/about-arthritis/conditions/knee-pain/

    I am sure our members will give you lots of support and ideas

    Best Wishes

    Sharon

  • ChrisMartin
    ChrisMartin Member Posts: 2

    Thanks for that @Sharon_K , I read all the knee pain stuff before I posted. Hopefully I can get some help from like minded folk in here.

  • Trish9556
    Trish9556 Member Posts: 740

    Hi

    Currently diagnosed with De Quervains, Dupuytren's contractions, cervical spondylosis and thumb arthritis. I have been shortlisted for an acdf to help with the neck but this was cancelled as they discovered an ectactic left vertebral artery which immediately put a stop to the surgery. I have now been referred to the Nuffield in Oxford who have reviewed all the scans etc and will see me when it's safe post Covid-19. I was also told I needed urgent surgery on the thumb but the anaesthetist has refused surgery due to the ectatic artery and will not let me have surgery until Oxford have sorted me out (hopefully). Struggling presently, just like the adverts and rattle. Can't take Ibroprofen due to tummy issues and cream is washed off. Current meds include Nefopam, Codeine 30 mg, Paracetamol, Amitryptiline plus hayfever and asthma meds. Snack on ready to eat prunes lol. Hope to be helped and and to provide help. Stay safe everyone. Trish

  • ajolly
    ajolly Member Posts: 59

    Hi Trish,

    Welcome to the forum! I am sorry to hear you have been struggling recently, it certainly sounds as though you have a lot going on. Please know you have come to the right place for support. All our members and moderators have experience with chronic pain and arthritis of some sort and are a great source of knowledge and support.

    I am sorry to see your treatment is delayed due to covid-19, this must be very frustrating for you. I have provided a link below from the Versus Arthritis website with information on managing neck pain. There is a section specifically on cervical spondylosis and another with exercises to help manage neck pain which you may find useful.

    https://www.versusarthritis.org/about-arthritis/conditions/neck-pain/


    I have provided a second link with similar information for hand and wrist pain which may be of help for your De Quervain’s tendinopathy, Dupuytren’s contracture and thumb arthritis.

    https://www.versusarthritis.org/about-arthritis/conditions/hand-and-wrist-pain/


    I do hope the above is of some use while you wait for treatment and I am sure our members will soon pop in to say hello as well.

    Please join in any of the conversations where you feel comfortable.

    Best wishes,

    Alice

  • Trish9556
    Trish9556 Member Posts: 740

    Thanks Alice, I will certainly go through those :-) Trish

  • Jeivers
    Jeivers Member Posts: 5
    Hello to everyone
  • ElisabethG
    ElisabethG Member Posts: 3
    edited 24. Apr 2020, 13:14

    Hallo

    Although I am an OAP I am still young at heart(ish) so thought it was about time I joined on here. I am 70 years of age and don’t mind admitting it. Live in Somerset and, of course, suffer from arthritis, fibromyalgia, polymyalgia, CFS etc. Ain’t life grand? Sadly I can barely walk and am lucky enough to have two mobility scooters: the small one is called BOOH or ‘Bat out of Hell’; the larger one is Super BOOH’. Have three daughters and six grandchildren whose ages range from 5 to 20 and whom I am missing like crazy right now although they all live nearby. Hope to see you around once I have found my way 😀

  • Brynmor
    Brynmor Member Posts: 1,755

    Hi Elisabeth and welcome to the Community. Its lovely to have you here.

    I love the names you have given to your mobility scooters. Do you have adornments on them to match the names? 😃

    Do join in across the Community, ask questions or call in for a cup of tea in Val's Café. You will be made most welcome.

    All best wishes

    Brynmor

  • ElisabethG
    ElisabethG Member Posts: 3

    Hi Brynmor and thanks for your message. No adornments yet although my middle daughter does threaten to paint ‘go faster stripes’ along the sides.

    Lizx

  • deefletch
    deefletch Member Posts: 4
    edited 26. Apr 2020, 14:29

    Hello My name is Denise and I have OA in my spine and now stabbing pains in my groin which could be a torn cartilage according to the physio. Im 59 and whenever I stand up from sitting Im like a rusty old machine! Ive just started taking Turmeric! Fingers crossed!

  • trayored
    trayored Member Posts: 3

    Hello

    I hope joining this site especially the forums will help me. I'm 68.

    In January I went on holiday to Sri Lanka with no problems but developed a stiff neck which went worse on my return.

    The doctor said it was osteoarthritis and gave me some excersises. However since then I have had numerous muscle problems. And I'm in limbo for a proper diagnosis due to Covid-19.

    Waiting for a head MRI scan after a telephone consultation call from the orthopaedic consultant on the first day of lockdown.

    Rheumatologist appointment for problems in wrist and kneecaps have been cancelled.

    Paracetomol for pain relief but it's all so frustrating not knowing what I've got where.

    I'd like to expand on each area for some advice on the forum.

    thanks

    Therese

  • chrisb
    chrisb Moderator Posts: 757
    edited 26. Apr 2020, 19:29

    Hi Therese and welcome to the Versus Arthritis Forum.

    Having been recently diagnosed with OA it’s unfortunate that you’re having to now wait for your MRI and appointment with the Rheumatologist, this must be very frustrating for you.

    Whilst you’re waiting for further diagnosis you may find this section of our website useful to browse

    https://www.versusarthritis.org/search?query=RA

    If you ever feel the need our free Helpline can be contacted on 0800 5200 520, or email helpline@versusarthritis.org (Mon - Fri 9:00am – 8:00pm).

    I’m sure you will receive some useful advice from forum members so please do participate widely within the forum.

    Best Wishes

    ChrisB (Moderator)

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

  • Hippychick1
    Hippychick1 Member Posts: 2

    Hello everyone I have just joined today .I thought it would be good to listen to others who are struggling and maybe pick up a few suggestions.My O A has been with me for about 20 years now but I have never been in so much pain and unable to get around as I have these last few years. Hip replacement is not an option I can take up,to be honest ,they 've put me off for the last five years so I can't see it happening ever.three times they have done a pre op only for me to be told there isn't a bed for me in ITU.looks like I just have to live with it.It's all over my body and I need to get weight off but can't move much.turning into a moaning minnie!

    sorry to go on a bit.

    thanks for listening

    H C

  • Annj
    Annj Member Posts: 59

    H @Hippychick1, good to have you with us, thanks for joining. So sorry to hear your pain is getting worse. I think we often learn to adjust to our "usual" amount of pain over a period of time and then it can feel really difficult to deal with when it takes a more severe turn. It sounds really hard as well if you have intermittently had the prospect of an op raised, only to have it taken away again.

    If you haven't flagged up your worsening pain with your consultant I'm sure it's worth doing, although obviously things are not easy at the moment with lockdown and appointments. It may be worth asking your GP to refer you to your local pain clinic, if you haven't already tried this.

    We have a free telephone helpline as well if you feel it would be good to talk to someone:

    https://www.versusarthritis.org/get-help/helpline/

    I'm sure you will find the forum a good place for sharing, asking questions, chatting and venting. Our members have a whole range of experiences of arthritis and are a kind and caring bunch.

    With best wishes,

    Ann

  • borisborisoff
    borisborisoff Member Posts: 1

    Hi everybody. Im new as you can see by my status. Just thought I would post on here and speak to other like minded people.

  • Ellen
    Ellen Moderator Posts: 1,841

    Hello @borisborisoff welcome to the Versus Arthritis online Community on behalf of myself and the Moderating team

    Do please tell us a little about yourself - for instance what kind of Arthritis you have - that sort of thing so that other like minded people can find you on here.

    Best wishes

    Ellen.

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