Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Viewing 15 posts - 1 through 15 (of 15 total)
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  • #29576
    Katie
    Participant

    I’m wondering if anyone has seen any information about whether people with CRPS should self-isolate against corona virus? On the government advice pages it states that people with ‘chronic neurological conditions such as MS’ should self-isolate. CRPS is a chronic neurological condition so I’m wondering if others have any answers to this question? Many thanks.

    #29628
    PoppyToms
    Moderator

    Hi Katie,
    This is a good question, I think we’re all so unsure as CRPS is never mentioned in any medical lists. As CRPS means our bodies usually don’t regulate our immune systems well then I’m taking it as we are ‘vulnerable’ and I am self isolating.
    The article on the home page is being kept up to date and explains the effects on CRPS patients well. I’d recommend we err on the side of caution and protect ourselves.
    Hope this help, take care.

    #29630
    Katie
    Participant

    Hi Poppy,

    Thank you very much for your response. It’s really helpful to know that you are self-isolating and to have more information in the blog. I’ve been self-isolating to be on the safe side and will continue.

    The next challenge is working out how to somehow make up for twice weekly hydrotherapy now that the pools have been closed. I’m considering getting an inflatable hot tub to help with pain management! Any other suggestions gratefully received :-).

    Take care,
    Katie

    #29631
    PoppyToms
    Moderator

    Hi Katie,
    I agree the lack of our usual appointments is going to be challenging. In the grand scheme of things it is totally understandable why we cannot attend and resources are being used elsewhere but our situations aren’t going to change, we still need to continue with what works for us.
    I’ll be working on my physio exercises at home until we get to see them in a few months. If hydro works well for you then if you have the means to install a hot tub then that sounds like a great plan. If not, could you adapt any of it to the bath and increase other exercises to keep the muscle improvement up?
    Guess we’re in a time of improvisation for a while lol.
    πŸ™‚

    #29632
    Katie
    Participant

    Hi Poppy,

    It’s very nice to receive your messages. I’ve not really reached out to other CRPS sufferers before (worried about the horror stories) and it’s a relief to feel like someone just ‘gets it’. Yes, I agree that whilst the closing of Pain Clinics and other sources of support for the likes of us makes sense and will ultimately save lives it makes for a challenging time. I’ve been trying to have regular baths, yes. My CRPS means that my leg is usually freezing cold so any warmth is very welcome. I’m still pondering the inflatable hot tub idea as it’s not cheap and I want to make sure I would really use it before committing…

    Glad to hear that you’re continuing your physio exercises from home. I have wondered whether some physio departments might offer sessions over skype, just to offer encouragement and advice rather than completely cutting off for a few months.
    If not, improvisation it is πŸ˜‰

    #29637
    PoppyToms
    Moderator

    Hi Katie,
    I am glad you reached out, we don’t need to be alone with this condition even if we won’t come across people in ‘real’ life with it there is still a lot of us out there.
    My physio has offered Skype with another member of the team (she has headed to the ICU wards from today as she is respiratory trained, amazing! ) so that is an option, they are going to ring me in a couple of weeks to see how I’m getting on.

    I flip from hot to cold, mostly cold these days but one thing that I find is an absolute blessing for me is a heated throw, it seems to make me a little more comfortable no matter which way I’m flaring, plus it’s just nice snuggled up with a warm blanket lol. The dog loves it too!
    I’m no good in water, after 2 sessions of hydro they pulled me out and asked me not to come back as my leg was a horrendous colour eek lol, I’ve daren’t try a bath since, but the thought of soaking in a lovely warm hot tub sounds great. Like you say they are expensive though, what about a second hand one, or even hiring one for a week (our area has small businesses that do party ones for girls pamper parties etc) I’d imagine with fresh water and all the chemicals they use it should be hygienic enough but I’m sure they’d be able to advise on that.
    I already spend a lot of time at home, like a lot of us CRPS folks so not feeling too overwhelmed by it at the moment, but the rest of the family here is lovely for company (but quite tiring as I’ve more to do!) thinking of taking this opportunity to learn something new, a language or skill or something though. How about you, how are you finding it all?
    πŸ™‚

    #29647
    Katie
    Participant

    Hi Poppy,

    Glad that you’ll be able to have physio over skype, that’s brilliant! I’m just waiting to see whether my physio might consider that too.

    Brilliant that you find a heated throw helpful. I bought one of those and then it had to go straight back to the shop as the electric currents in the blanket made my nerves go even more haywire. So weird how differently people react. I find systematic desensitisation brilliant – I do it several times a day and that brings the pain down and somehow tells me leg that I haven’t forgotten it. So sorry that your hydro caused such awful colour changes and that you had to stop. Maybe it might be something that you can bear further down the line. I’ve taken the plunge (excuse the pun!) and ordered the hot tub – my PIP was finally awarded after nearly a year’s wait yesterday so this will pay for that which is great, phewf!

    Tbh life hasn’t changed much for me very much as I sit most of the time with my legs elevated to help the circulation, and have to be very controlled in how much I do or my anxiety and pain go up too much. So the only things that have really changed are not going out for hydro or other medical appointments. How about you? Are you able to work normally/does this mean that your daily routine is very different?

    #29655
    PoppyToms
    Moderator

    Isn’t it interesting how different everyone’s symptoms and eases can be for the same condition? People can be total opposites or very alike. I am really hoping to revisit hydro one day, I’m working on water as I really want to be able to go in the sea one day with my daughter as she enjoys bodyboarding and I told her i’d try it one day…realistic goal?! haha, I’m not sure but we have to hope lol.
    I don’t work in employed work anymore, but I do some voluntary work online with Burning nights and some with another charity which involves home visits to families. With the virus we have stopped all face to face contact so i’m now doing them over the phone. I find working voluntary much less stressful, I don’t have to worry about regular hours, needing time off for appointments etc. I just do what I can when I can so suits. I also spend most my time legs up lol, have a big chunky footstool and cushions and have to pace my activities…which I am terrible at and often over do things! But hey, we’re just figuring it all out aren’t we?
    Exciting news about the hot tub, and congrats on your PIP, hopefully it will ease some stress.
    You’ll have to post a picture of it all set up when you get it πŸ™‚

    #29672
    Katie
    Participant

    Yes, it’s extraordinary that people are affected so differently, and also how symptoms and therefore eases (good word) can change over time. For several months last year I was desperate for the next ice pack from the freezer and now I have a constant hot water bottle! Have you had any success with mirror work? I’ve found it fascinating to discover how this works.

    I do hope that you manage to get back into water and achieve your dream of body boarding with your daughter one day. It’s important to have goals; I’m dreaming of going dancing in Italy in the future at some point!

    It’s interesting to hear about your voluntary work for the two charities. That sounds great. It’s really important to have a sense of purpose and helpful that you can work when you can/want to rather than feeling pressurised because it’s a paid position.

    Hot tub should be arriving today, fingers crossed!

    #29783
    PoppyToms
    Moderator

    Hi Katie,
    Just thought I’d check in and see how you are doing and how the hut tub is going? It’s supposed to be lovely weather this weekend so hopefully you’ll get some relaxing time in there as well as physio πŸ™‚

    #29808
    Katie
    Participant

    Hi Poppy,

    How kind of you to be in touch. The hot tub is all set up and I’ve now been in a couple of times! It’s great – 36 degrees and enough space to really be able to move my legs around comfortably so that I can do some of my exercises. Not as good as a hydropool but a brilliant half way house. With the glorious weather at the weekend it felt like being in another country!

    How’re things with you? How’s your crochet coming along? Hope you’re managing OK and that no-one you know has become ill with Covid-19.

    I’ve also been working on a mandatory reconsideration for PIP – I was awarded enhanced mobility but nothing for daily living. Have you gone through the PIP process?

    Katie

    #29989
    PoppyToms
    Moderator

    Hi Katie,

    Pleased to hear the hot tub is working so well, we’ve certainly been having the perfect weather for it! Glorious sunshine most days here (although sometimes a bit chilly) but yes, lay back and imagine you’re on holiday haha

    I’m good thank you, so far so good with the virus and family and friends luckily, hope you are too?
    I have been through PIP process, only once and I was awarded it so I haven’t had to do the appeals process but I believe the Citizens Advice Bureau can be very helpful. Fingers crossed it goes well for you, how incredibly frustrating that you even have to go through this!
    Hope you are keeping well, take care πŸ™‚

    #30017
    Katie
    Participant

    Hi Poppy,

    Glad to hear that you and your family and friends are keeping well. So far my family are fine, although I have heard that two people, in their eighties, who I knew (but not that well) have died of Covid-19. These are very strange times, especially as people then can’t get together to support one another and have a proper funeral.

    I’m so grateful for the hot tub and our garden. I do feel for people without much space.
    How’s your daughter finding the lockdown? I hope that it’s not too challenging for you if you’re having to do home schooling..

    I’m really glad you got the PIP first time. Can I ask if you got an award for both the mobility and the daily living sections? If so you did SO well to get this first time round :-).

    Keep in touch,
    Katie

    #30048
    PoppyToms
    Moderator

    Hi Katie,
    Great to hear you’re keeping well, so sorry to you’ve lost acquaintances to this awful pandemic, it seems to be starting to trickle through to people we know or friends of friends now. Still finding it all so surreal!
    Homeschooling is on the whole not too bad, the teachers have been incredibly organised, more motivational issues as teens would rather not get up and have their mum nag at them to work lol
    I did get both first time in PIP but not enhanced, to be honest I was surprised I’d got anything given all the negative feedback you see about the whole process. I really hope it comes through for you πŸ™‚

    #30080
    Katie
    Participant

    Yes, surreal is the word! Though I keep joking to people that I’ve been practising for lockdown over the past 18 months anyway so I have coping strategies down pat ;-). You have to laugh!

    You did so well with the PIP. I’m hoping that second time round I’ll get something for the Daily Living category.

    Glad to hear that you’re doing OK with homeschooling. Ah yes, I can imagine it’s really hard to motivate a teenager! I guess at least there’s not the pressure of exams this year. Though actually I rather feel for pupils who won’t be able to take A-levels or GCSE’s…it just feels wrong on so many levels that they don’t get the chance to actually sit them.

    Take care! πŸ™‚

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