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Hi, my name is Alex1970!

Alex1970 Member Posts: 21 Connected
Good morning everyone. Hope you are all having a good one. I'm here to hopefully get some advice and support and if possible return that too. 


  • poppy123456
    poppy123456 Member Posts: 23,910 Disability Gamechanger
    HI and welcome,
    Do you have a question you'd like to ask? I'm sure someone will be able to help you further.
  • Teddybear12
    Teddybear12 Member Posts: 782 Pioneering
    edited October 5
    Hi @Alex1970 I hope you enjoy being part of the Community. If you have any questions please ask. Please join in.
  • Alex1970
    Alex1970 Member Posts: 21 Connected
    Thanks everyone 😊
    My question would be how on earth does everyone cope? I've got lymphedema with arthritis and now a cyst in my knee. I'm in so much pain that I can't sleep and I'm exhausted. I have therapy for the lymphedema which helps massively but is very expensive at £63 a session. I'm having a scan on my knee on 23rd October so will see what comes of that. My GP gave me codeine for the pain which helps but makes me sleepy. I work full-time at a desk job which doesn't help with all the sitting down. And I'm going through the menopause 🤣. It's getting me down and I'm sure there's tons of people in the same and worse situations sadly. All advice is really appreciated. X
  • Ross_Scope
    Ross_Scope Posts: 5,005

    Scope community team

    Hi @Alex1970

    Welcome to the community, it's good to see you join us!

    Sorry to hear that you are finding things difficult at the minute. In truth, everybody probably copes in different ways and everybody will have their good days and bad days naturally. I think it's important to access any help that you are entitled to, which you appear to be doing, and utilise the love and support from family and friends if it is an option for you.

    Furthermore, having hobbies and interests that take your mind off the struggles helps, relaxing your mind is essential and those sorts of things will do that for you.

    Is your employer aware of your conditions? Have you had any conversations with them about any ways in which adapting the way you work could benefit your health?
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 352 Pioneering
    Hi @Alex1970

    Welcome to Scope's forum. It is great to see you have joined us. I think it is wonderful that you want support and are also wanting to support others. I am doing well thank you, how are you?

    Forget that if it sounds like a silly question! It sounds like you are in a lot of pain at the moment and are feeling frustrated. On a similar note to the wonderful advice @Ross_Scope has already provided, I would be more than happy to provide further information about reasonable adjustments if this is something you would like to access but are uncertain about how to approach. Just let me know!

    Additionally, although we don't provide medical advice here at Scope, I am wondering if the therapy is offered by the NHS? If so, is this something you would feel comfortable discussing further and navigating with your GP?

    Take care, I wish you the best of luck with your scan and I will look forward to hearing from you again soon! 
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi @Alex1970 - & welcome to the community from me too. Thank you for joining, but I'm sorry to read you're in so much pain. Pain is exhausting, but, as Ross has said, there are ways sometimes to make it that bit more manageable. I live with constant chronic pain, & it's finding what may work for you. First I would suggest talking with your GP, as codeine is making you feel sleepy, which can't be helping with your job; perhaps there's something else they could suggest.
    You will see mention of physiotherapy, &, as this is my background, please see the following website too from the Physiotherapy Pain Association: https://ppa.csp.org.uk/content/links-people-living-pain
    I haven't got lymphoedema, but I do have generalised osteoarthrosis, & a Baker's cyst at the back of one of my knees; my joints are hypermobile, & I also have neurological pain. I'm a great believer in exercising gently, which I think you know, as your work involves sitting down a lot, so having short breaks where you could move around a bit would be a great 'reasonable adjustment.' See Scope's info about this: https://www.scope.org.uk/advice-and-support/work-careers/reasonable-adjustments/
    So, there are some options open to you.....at least worth considering. Hopefully you will know more with your scan, & ask to have a copy of your specialist's letters; I've always found they were willing to send me a copy if asked.
    I hope some of the resources above help; be open to trying different things that might work for pain..... we're all different, & sometimes it's a combination of things that work, & please kindly let us all know how you're getting on.
  • Alex1970
    Alex1970 Member Posts: 21 Connected
    @Ross_Scope, thank you for your reply and advice. Work is actually one of the main problems. I work in construction on building sites and they are not at all helpful; everything is seen as a way of getting out of work. I'm trying to change the industry I work in but after 15 years in this one people seem to think that's all I can do. But, I do have an interview on Friday for a local government job so fingers crossed! 
    I'd love to start yoga but I'm super nervous about starting. I know logically that I'd be fine once I made the first step but it's actually making that first step....

  • Alex1970
    Alex1970 Member Posts: 21 Connected
    @L_Volunteer, thank you for your message. Hope you are well. Yes, the pain is getting me down. I'm ok if I can constantly fidget! Advice on reasonable adjustments would be very handy thank you.
    I did have some appointments for lymphedema at the hospice but they seem more set up for people who have the condition after having cancer treatment. I kind of felt bad using their time which could be used for cancer patients. 
    The scan is on 23 October so hopefully shouldn't be too long before I know what is going on.

  • Alex1970
    Alex1970 Member Posts: 21 Connected
    @chiarieds, good morning and thank you for all the information! I will have a good read of everything - dealing with pain without being dependent on painkillers is something I'd like to look into as being sleepy as you say isn't good for work and definitely not good for driving! I'm thinking I have probably got a Bakers cyst too - do you find anything in particular that helps you manage it? It sounds a bit weird but I feel like my health declined after my greyhound died and I stopped walking her and I love another older dog but my landlord won't allow pets. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi @Alex1970 - you're very welcome. At first my GP tried aspirating my Baker's cyst, but we gave up after 2 goes as the swelling returned in less than 24 hours. As can happen, mine was probably caused by osteoarthrosis, which in my case was due to excessive wear & tear because of having hypermobile joints. When I had a MRI scan, it showed that I had a snake like connection from the front of my knee to the back, so fluid easily moved to the back of my knee. I was offered arthroscopy when I saw an orthopaedic surgeon privately, but I had no faith in him, & 9 years later my knee is no worse than it was then. I think my physio background has helped in keeping on exercising; I just do a little, but often, as that works best for me. I can't tolerate codeine, & non-steroidal anti- inflammatory drugs just don't work for me. I tried CBD hoping it might help with my neurological pain; it didn't, but my lower back pain is kept at bay with it, & I seem to have fewer partial dislocations of my knee, so that helps.
    I'm sorry about your dog; greyhounds are such lovely dogs, & together with whippets are my favourite breeds. However I have to put up with dog-sitting my son's Bedlington terrier a couple of times a week. He's really lovely too, apart from the fact he chases my cat! I hope your job interview goes well, & that you let us all know how you get on. :)


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