Too little, too late 😪

Andrea54 Member Posts: 7
edited 28. Nov 2023, 14:10 in Living with arthritis

👋. This is my first return since August 2022. I did get to take the methotrexate, but it had to stop because my liver complained. After a long time being ignored I was started on more pills. Now awaiting biologics to arrive. In the very long time in limbo my hands have completely changed. Now officially 'very bad' and 'very active'. This is just so disappointing and frustrating. I'm now trying to come to terms with not being able to do what I enjoyed. I'm in dreadful pain which adds to my distress of course. Poor husband and daughter both in despair because of my mental state. This arthritis doesn't just ruin my life but is also ruining the lives of those I love.


  • noddingtonpete
    noddingtonpete Moderator Posts: 826

    Hello @Andrea54 good to see you back. It can be difficult coming to terms with the effects of arthritis and I hope that the biologics work for you when you get them. Have a look through the following article - I hope it will be of some use, and also we have a Helpline you can contact if you have any questions.

    The Helpline is

    Best wishes

    Peter (Moderator)

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

  • frogmorton
    frogmorton Member Posts: 29,021

    Morning @Andrea54 I am so very sorry you are having such a tough time getting the right meds to control your arthritis you have been very unlucky with the MTX not agreeing with your liver. I do wonder why you went so long with no treatment after that though at least now the biologics are on their way I hope.

    I hope you are at least on something (steroids maybe) to tide you over?

    I'm sure you are doing your best to put on a smile for your daughter and husband, but it's tough while you are struggling so much. Do ring the helpline if you can I have and it helped. Sending ((()))

    Toni x

  • Trish9556
    Trish9556 Member Posts: 390
    edited 31. May 2023, 07:26

    Hi @,@Andrea54

    I'm not sure I will be able to help you as my hand problems were and are mainly in my wrist/thumb and I had a trapeziectomy in 2020.

    My main points are don't use cream unless it's as you go to bed and wear a pair of gloves over your hands to stop the cream getting in your face/eyes. We are constantly washing our hands throughout the day so you're just wasting your money applying the cream.

    Heat is important and I have found Hot Hands or Little Hotties little packets of magic. They are air activated and can be held in your hand, squeezed or simply put inside a pair of fingerless gloves. One lasts about 12 hours and they do get very hot. A must have in winter when it's cold but work equally well in summer.

    You can get them as a packet of two in most shops to try out but if you get on with them but then by the box from online selling sites. They can be as much as a third cheaper buying them this way. I still use them.

    Alternate hot with cold and you can do this simply by running them under a cold tap for bout 10 minutes or plunging in a bowl of iced water. By using water rather than posh products you can do this anywhere and anytime simply by visiting the ladies! Don't try doing this with hot water though otherwise you could burn your hands without knowing how hot the water is going to get.

    Alternating hot and cold encourages blood flow I believe - I not sure of the science side but it works.

    I would recommend the use of a splint but without knowing the extent of your hand problems I would suggest you insist on being referred to a physio/MSK team to look at your hands and point you in the right direction.I don't want to suggest you purchase something that's going to do more harm than good.

    Speak to your GP and insist on having some stronger form of pain relief than over the counter remedies. Don't let them fob you off with just cream which can only be used twice a day and is swiftly washed off. I can't take anti inflammatories and have used a combination of 60 mg Codeine 4 times a day with 2 paracetamol half-way between doses to boost the pain relief. I have also taken, and still do, Tramadol, now for my hip.

    Compression gloves may help - I purchased a few pairs and they had no effect at all but we are all different and some people swear by them.

    As a form of physio, jigsaws are really good and can be done with your daughter - you may curse when trying to pick up the pieces but persevere with it. Physio putty and physio balls are good and can be bought together in online shops. They both come in varying hardnesses, just use the lowest one and play with it like you would play-doh or plasticene and the ball is usually egg shaped and can be used when sitting down watching tv and you simply squeeze and pinch it.

    I really do feel your pain and know how useless you must feel - I was a PA for almost 50 years bashing away on a keyboard and when my hands started playing up I thought that's it I can't go on, I can't get through this. My hands were so painful simply because of my thumb/wrist but I did by sheer determination and with the support of a brilliant surgeon and hand therapist.

    I hope I've given you a few tips, please please reach out to me either on this post or by direct message if you need absolutely anything. I can't guarantee to answer immediately but I will do as soon as I can.

    Love and hugs to you

    Trish xx

    Edit I've just seen you're already on meds so definitely worth speaking to your team about a referral to a hand specialist/X rays etc xx

  • noddingtonpete
    noddingtonpete Moderator Posts: 826

    Hello @Andrea54 @Trish9556 @frogmorton Thanks Trish that is really good advice. I use a stress ball (soft foam). OK actually it is a panda my wife bought for me and we sent our daughter in Australia a Koala. I think they cost about £5 and we got ours from the shops (we didn't spend online for once😀

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

  • Trish9556
    Trish9556 Member Posts: 390
    edited 31. May 2023, 08:39

    Hi all @Andrea54 @frogmorton @noddingtonpete

    Yes, any sort of soft ball is beneficial to start with and this time of year they're everywhere but as you progress you may need something that is going to push you a bit better. Imagine working up from a soft foam ball to a cricket ball but without the weight The physio balls I have are the size and shape of an egg and perfect for fitting in my small hands but we all find our own way of working and what works for one may not work for another and that's how it works in here, we all suggest what works for us and somewhere along the line it works for someone else.

    Love n hugs.

    Trish xx

  • jamieA
    jamieA Member Posts: 605
    edited 31. May 2023, 08:19

    Hi @Andrea54

    I'd agree with @Trish9556 that be careful if you use the likes of capsacin cream on your hands - I once happened to rub my eye a while after applying the cream to my knee then washing my hands and it was painful for quite some time. I use compression gloves and feel they work for me - both for the compression and the warmth that they retain. Immersing my hands in hot water helps a lot - so I'm now the family dishwasher. I also have what the orthopedics consultant I saw last month called night splints which I wear overnight. Prior to this I'd wake up around 3-4am due to my sore hands - I don't now. I think he said they were for carpal tunnel treatment as well. I've also bought quite a few aids to help me - particularly in the kitchen - stand mixer, bottle/jar opener, electric can opener, ring pull opener, large handle knives and hot water dispenser. Lastly I do my exercises daily and include hand exercise putty - which is a bit like playdough. Ask to be referred to an occupational therapist - they provided me with a lot of suggestions.

    I'm on the biosimilar of adalimumab Amgevita - along with sulfasalazine and MTX - and it made a great difference to me. Prior to going onto it in July 2021 I couldn't close my hands or do anything dexterous - I couldn't handle my medication. Now I'm back to being able to cook. I'm not cured but I'm in a far better condition than I was.

    I hope you get a treatment that works soon.

  • Trish9556
    Trish9556 Member Posts: 390
    edited 31. May 2023, 10:13

    These are my exercise balls and pack of putty. The long pink pen has a tip on the end for using with touchscreens. Ideal for messaging when I remember to use it lol xx

    Love n hugs

    Trish xx