Struggling

I last posted back in April of 2019. I was talking about pain and mentioned that I was awaiting an operation. I had some very helpful responses for which I am very grateful. It was decided that rather than a knee replacement, I would have a double osteotomy.

However, I didn't get the operation in 2019 and I was hoping that I'd get it in 2020. Then COVID struck and waiting lists went on indefinite hold. To this day I am still waiting with no date in sight - my last contact with the hospital told me that the waiting list still hadn't started moving yet.

My neurologial condition (spinocerebellar ataxia type 2) affects the way I walk and caused the knee OA in the first place. Today I now have OA in my other knee and also my right hip.

I can stand for only a few minutes at a time before the pain becomes unbearable and i need to sit down. I'm using a wheelchair more and more because putting weight on my right leg is painful.

The OA is limiting my ability to move and lack of movement increases the progression of my degenerative brain condition. I've gone as far as I can with painkillers and I don't want to spend my time in some drug induced state of lethargy (my neurological condition causes enough brain fog as it is). I'm thinking of buying a TENS machine. Will that help at all and also what other strategies for dealing with the pain without popping loads of pills do you have?

Comments

  • Ellen
    Ellen Moderator Posts: 1,607

    Hi @Jason1972

    Wile you are waiting for one of our members to come along this might be worth a read?


    Scrolling down to 'physical treatments' includes information about tens for example.

    I do hope you have seen a physiotherapist? If not is that worth looking into? Maybe hydrotherapy might be something available in your area?

    Best wishes

    Ellen.

  • Darko74
    Darko74 Member Posts: 8

    So sorry to hear your struggling, hope you can get a bit of peace. In reference to physiotherapist I didn’t find them helpful at all, they manipulated me over two sessions and gave me some photocopies of some exercises to do at home, really I could have got them myself to be honest, hope you have a better experience than me. Good luck! 👍🏻

  • stickywicket
    stickywicket Member Posts: 27,704

    I don't know about TENS. I've never used one tho' I did once try a 'Pain Gone' pen which I think is/was a mini version. It totally failed to live up to its name😉

    It's really hard to think of what might help as there's your ataxia to take into consideration too and I've no experience of that. My go-to help is usually a physiotherapist. I know there are lots of useful exercises on here but to have some specially for our own needs does help. Our local (private) one spends ages just talking to you to ensure what's needed and what you can and can't do. They then ask you to do some while they watch and advise then print off a sheet for you with advice on how and when to do them - usually little and often at first but building up gradually. One session (about an hour at about £35) is all it takes though, obviously, you can go back if necessary. Of course it doesn't take away all the dross but it does help a lot, for me at least, if I do them every day or even just every other day.

    That apart, it's just distraction for me.

    I hope you find something helpful.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jamieA
    jamieA Member Posts: 698

    Hi @Jason1972

    I've got one of the generic tens machines from Lloyds Pharmacy with the separate electrodes - the one you can use anywhere. I didn't feel it really helped my knee - though it might have been my placement of the electrodes as other people recommend them. I see that you can now buy one specifically for your knee so that might be more accurate with electrode placement. I use capsaicin cream - when it's available - and the pain consultant I saw also recommended Ralvo patches which I use about every 3rd day when the capsaicin cream isn't available.

  • N1gel
    N1gel Member Posts: 160

    Hi @Jason1972 , I'm in the same boat (albeit an Ataxia of uncertain origin, and I've got ten years head start on you!). My left knee used to hyperextend so I started to use a knee brace about 15 years ago (I've been on crutches nearly 20), the brace keeps me mobile so I can do walks to and from the car but I've just been diagnosed with Medial TF Compartment OA and early PF OA. I already use a wheelchair and see it as a useful way to extend my 'range'.

    Totally with you on keeping drug use to a minimum. I didn't know immobility affected the Ataxia (although I've noticed changes post lockdown).

    Is it too late to consider a brace? People talk about muscle wastage but I find the Ataxia keeps my muscle tone pretty good.

    No tips on pain management I'm afraid, but mindfulness helps me live with and control the tremors - it might help with the pain? a long shot, but good luck.

  • alexander1
    alexander1 Member Posts: 70

    TENS doesn’t stop pain but I use regular as it disrupts nerve pain by being uncomfortable in a different way.

    I am on maximum drugs allowed at moment( not stepping to morphine)

    Have you been seen by a pain consultant. They tried ablation therapy for the back( didn’t work for me) but can be successful.

    i have lidocaine plasters issue which give some relief to be able to do something’s.


    I also try to go to the local hydrotherapy pool and just float around which is bliss


    Good luck with the operations

  • frogmorton
    frogmorton Member Posts: 29,387

    @alexander1 lidocaine plasters? Where are you based? I don't think we can have them here. I think a quick google said only for shingles sadly....

    Take care

    Toni x

  • jamieA
    jamieA Member Posts: 698
    edited 20. Apr 2022, 08:57

    Hi @frogmorton

    I've been prescribed Ralvo 700 plasters containing lidocaine since last year. They were initially prescribed for my shoulder as an MRI scan showed a muscle tear as well as arthritic inflammation. Since I've been unable to get capsaicin cream for some time now the Ralvo plasters have been prescribed for my knee as well. I think the doctors limit their use as they are so expensive. I find I only need use one every 3-4 days on my knee.

  • frogmorton
    frogmorton Member Posts: 29,387

    Ah right @jamieA thanks for that so it's a temporary measure in a sense if they are very expensive. When are they going to get the capsaicin back in stock honestly it's been far too long this issue hasn't it🙄

    Thanks

    Toni x

  • alexander1
    alexander1 Member Posts: 70

    @frogmorton Hi sorry for not replying sooner. I am in the UK


    I am under the Pain Consultant and he prescribed them for my back pains. I use two or three across the spine most days.

    GPs can’t prescribe them I think it’s mainly the pain consultants that can.

    It is literally a sticking plaster but can help you get through the day or at least an activity

    Ta

  • frogmorton
    frogmorton Member Posts: 29,387

    Wow! @alexander1

    So once the pain clinic has said you need the lidocaine patches you can have them! Very interesting indeed that.

    Thank you and hope you are doing ok

    Toni x