Help Needed!

helpingmum
helpingmum Member Posts: 5
edited 26. Jan 2017, 03:47 in Living with Arthritis archive
Hello!

I have come here on behalf of my mum who is really struggling and doesn't know what else to do.

She is 60 and has had osteoarthritis for many years. She's had a double hip replacement and knee surgery. She suffers from other health conditions - scleroderma & CFS to name a couple.

The past year or so she has deteriorated badly. In severe pain 24/7. She takes a very high dose of Amitriptyline & Co-Dydramol for pain relief. She's been told the only other option is Tramadol but she's taken this before and the side effects are too much of she is to continue working. She currently has acupuncture and physio which does temporarily help but has been told she can't have this as an on-going treatment. She has been offered cortisone injections but doesn't see the benefit when her pain is widespread and not in one particular area (like when she has had them before). She's been to a pain clinic on several occasions and they are saying there's nothing else they can do for her.

Some days, she really struggles to walk and describes it as not being able to put one leg in front of the other. Her legs physically will not move. She is finding this really distressing as she gets more and more housebound. She barely sleeps because the pain is too severe when she is lying down. She says when she wakes in the morning, every part of her is in pain, even her skull (?). She has gone part time at work but is close to quitting as she can't cope.

She sees her arthritis consultant next month and would like some advice on what other treatments are available, if any? Everyone just seems to be shrugging their shoulders at her.

I don't know if all of this is to do with her arthritis or if something else is at play. Any help or advice would be very much appreciated!

Emma

Comments

  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hello Emma

    Welcome to the forum, I am sure you will find support and advice here for your mum. There are lots of others on here who have Osteoarthritis and I am sure that they will offer some advice for your mum.

    If your mum or you would like to speak to someone about this you can contact our helpline on 0808 800 4050 (Mon to Friday 10am to 4pm)

    I am one of the moderation team, we all have one or more 'arthritis hanger ons' or look after family with the same. If you need help with the technicalities of the forum just get in touch via a personal message.

    Best wishes
    Chris
  • frogmorton
    frogmorton Member Posts: 27,475
    edited 30. Nov -1, 00:00
    Oh your poor poor mum :(

    That sounds dreadful :(

    I think you should go with her to her appointment to support her. They are more likely to take action if two are there (my experience).

    She should write everything down succinctly, but everything.

    What hurts, when and for how long. What helps? Heat (wheatbags) or ice? How much do painkillers help? how long for? What does it stop her doing?

    Has she considered patches instead? I have Bu-trans (synthetic morphine) some have fentanyl which is morphine.

    Advantages are that I don't get the woozy feeling with strong painkillers when you fist take them OR that desperate feeling when you need them, but aren't due yet.

    Also 8 less tablets to take a day!!

    Take care and thank you for posting for your Mum

    Love

    Toni xxx
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    That sounds tough but at least she has a kind, thoughtful daughter.

    I'm a bit puzzled because you speak of osteoarthritis (OA) yet also of her 'arthritis consultant'. This is usually a rheumatologist and they normally deal only with autoimmune types of arthritis such as rheumatoid (RA) or psoriatic (PsA). If your Mum had one of these types of arthritis she would have been given disease modifying anti-rheumatic drugs (DMARDS) which do help to slow down the progress of the disease.

    Perhaps her consultant is her orthopaedic surgeon. I doubt he can do anything for the arthritis other than another operation and, if it's widespread, that might not be helpful.

    There are other so-called 'painkillers' besides what she is taking but I'd have thought the Pain clinic would have suggested any that might be appropriate. Unfortunately, some people with OA do have to give up working as it becomes too much.

    I think the 'shrugging the shoulders' thing is simply because there is not a great deal that medics can offer with OA. If she keeps doing her physio exercises at least she should help to keep her muscles strong and this does ease the pain. A good, healthy diet and non-smoking help too. Other than that, much of it is a matter of adapting to our reduced circumstances and making the most of them.
  • helpingmum
    helpingmum Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you everyone for your kind words and help!

    I will print off the links provided. I have told her to start keeping a daily diary of what meds she is taking, symptoms, pain scale etc. I have a chronic pain condition also and find this so useful.

    She has never mentioned painkillers in the form of patches so I will put this on the list of things to suggest. I am going with her to the appointment so I'll have a list of questions and suggestions ready. I know she finds it overwhelming going on her own and feels she gets fobbed off.

    She uses a wheat bag for the pain which helps ease the pain. She describes it as widespread and struggles to pinpoint a specific area which doesn't help things. Some days she is better than others. I am trying to teach her that she needs to know her limitations and as frustrating as it may be, a lot of days she will just have to rest. She finds physio difficult and often puts her in more pain. I keep encouraging her to persevere as she needs to keep moving. She has been told she can't have physio as an ongoing treatment as she has already had well over the number of allotted sessions. Makes no sense to me!

    Stickywicket - She definitely has OA but does see who she describes as an arthritis consultant. He also helps with her scleroderma so he may well fall under rheumatology. I'm hoping after I have been to the appointment with her, I'll know much more!

    Emma
  • moderator
    moderator Moderator Posts: 3,640
    edited 30. Nov -1, 00:00
    Hi Emma,
    I'm glad you found all the information and links useful and I'm delighted that you are going with your mum to her next appointment. If she has scleroderma as well she will be under a rheumatologist. Please let us know how she gets on as we will all be thinking of her and you. I'm sorry to hear that you have a chronic pain condition as well it must be very difficult for you to manage your own condition and worry about your mum as well. Take care and look after yourselves.
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    I hope you'll know more too after the appointment. I'm sure you'll be very useful to her.

    It's true that physio has to be rationed but, usually, once we've learned the exercises and are doing them correctly, the physio's job is done. The rest is up to us. I dread to think where I'd be without mine.

    I've just been reading through Arthritis Care's booklet on exercise and it's really good with stuff for all levels of arthritic pain and ability. Have a look or maybe, more importantly, get your Mum to look at it :wink:https://www.arthritiscare.org.uk/what-is-arthritis/resources/218-exercise-and-arthritis

    Please let us know how you both get on.
  • frogmorton
    frogmorton Member Posts: 27,475
    edited 30. Nov -1, 00:00
    I am pleased we've helped you a little.

    Please do let us know how you and your Mum get on next time she goes to the doctor. I hope you can go too.

    Fingers crossed things can be improved for her even if only a bit :)

    Love

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I empathise with your mum, I have PsA and the joint damage from that has led to OA in both ankles, both knees, both hips and elsewhere: the pain is ongoing, never lets up, I can make it worse by overdoing things and ease it a little with resting. My rheumatologist deals with my PsA and ignores the OA because that is not her remit, whereas my GP deals with the OA and ignores the PsA for the same reason.

    I am pleased you are willing and able to her next appointment, as Sticky said physio is a short course where we are given exercises that suit us as individuals and then the ball is in our court, do them and keep the range of movement we have or don't do them and lose what we have, making starting them again much harder work! I still do the post-op exercises from my first synovectomy in 2002, from my second and third in the following years and others which have been added as new conditions have joined my creaky party.

    Please let us know how your mum gets on, has she ever been referred to a pain clinic? You may have mentioned this (or it's been suggested) but I'm not at my sharpest today! I wish you both well. DD
  • barbara12
    barbara12 Member Posts: 21,257
    edited 30. Nov -1, 00:00
    Oh Emma I do feel for your mum and you having to see her suffer like this, I see you have had lots of advice ..so I wont go on but do hope the appointment goes well and they can offer some help..please let us know how it goes..x
  • helpingmum
    helpingmum Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you for all the replies :)

    She has now been prescribed painkillers in the form of a patch which were helping but her right knee had completely given way now. She can barely walk, is housebound and the pain is excruitating 24/7. She says it's exactly the same pain as she had in her left knee some years ago and they had to operate. She has been referred to a consultant and given liquid morphine for the pain. This doesn't seem to particularly help and to watch her crying in pain today saying she can't go through this again was utterly heartbreaking. The same thing has happened with her left knee and both hips. The doctors couldn't believe how quickly the joints deteriorated, almost overnight it seemed.

    I'm doing my best to keep her spirits up but feel so helpless. Apologies this has turned into a bit of a sob story, I only really wanted to say thank you for taking the time to reply!

    Emma x
  • stickywicket
    stickywicket Member Posts: 26,707
    edited 30. Nov -1, 00:00
    This must be truly awful for you to witness and I really feel for you. If your mother is on both patches and liquid morphine it's hard to see where else the docs can go. Will your Mum come on here herself and talk to us? Or maybe ring our lovely Helpline people? I'm afraid that's all I can I think of.
  • helpingmum
    helpingmum Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you for the kind messages. We were told yesterday her surgery is scheduled for two weeks which is great news. She has also had a cortisone injection which has helped with the pain in the meantime. Unfortunately, my mum isn't very computer literate so she would be useless trying to navigate herself round a forum! With surgery not far away, she's in better spirits which is great to see.

    Thanks again
    Emma

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