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In so much pain..struggling to walk or do anything at all.

nam82nam82 Member Posts: 7 Listener
edited January 16 in Disabled people
Hi everyone I'm new hear. I wanted to say hi. And have a moan about how I am feeling. Wanting people's opinions on my post and health. 

So I've had fibromyalgia for almost 6 years I've always struggled getting pain management. And I've learnt to go steady and not over do things..last year in January I had a total thyroidectomy. Ever since I have gained 3 stone in weight. I am struggling to walk any where. My limbs mainly my legs and arms are constantly hurting me they feel so heavy it's unbelievable. I get regular tingling in both my legs and hands. Sometimes burning follows with that. 

I'm just wondering if maybe my conditions have other underlying problems like ms. I have been under alot of stress and suffering with my mental health. I'm getting the support slowly. I do feel am not getting any better and I've gotten worse..before Christmas I applied for pip. And also considering.a mobility scooter. I am starting to now tell my.self.that I do need help and I hate to admit this..given I was a very active person healthy and now just a house ridden mess. Let me know your thoughts kind regards Nikki. 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    I'm sorry you're feeling this way. Unfortunately, we are not medical professionals and won't be able to give you any medical advice. Please speak to your GP with any concerns you have.

    We have members here who have fibromyalgia, including myself. So i can totally relate to how you're feeling, although we are all affected differently by our conditions. I can only do a certain amount before my body starts telling me, i've done enough for that day. For me my legs and arms are the worst and walking is very difficult for me. I use a mobility scooter when i'm out, which helps. I find the cold weather makes my pain so much worse, which is why i hate the winter so much. Hot baths always help ease my pain, although it doesn't take it away completely. Does heat help your pain? I know we are all different.

    Please do have a look around the community and maybe pop into the "lounge" and join in with some threads that are posted in there. We are a very friendly community.

    If you have any questions with your PIP claim then please do ask and i'm sure there will be someone that could advise you with that.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • nam82nam82 Member Posts: 7 Listener
    Hi and thank you for your reply. Heat used to help.me but now it doesn't at all. I just struggle all round even taking a bath is so difficult

    I wasn't looking for medical advice.
    Now that I've read your reply I can clearly see that it is fibromyalgia that impaires our ability to walk. I get intense pain if I walk any where and my bones feel like they are ready to give in. 

    I am self.medicating with my pain. That's how good my GP practice is. I am changing my doctor's once I move house. As I fall over quite alot to. 

    Sending you my warmest wishes Nikki.  


  • Ross_ScopeRoss_Scope Posts: 3,229

    Scope community team

    Hi @nam82 and welcome to the community, I'm glad you've joined us. 

    Sorry to hear that you're struggling at the moment, I imagine the national lockdown being thrown into the mix doesn't help. 

    As you implied in your post above, I think asking for a different GP is a very wise decision if you are unhappy with the support you currently receive, hopefully that will bring progress for you in terms of the help they'll be able to suggest.

    I appreciate you haven't had the greatest experience with your GP, but have they or other health professionals ever explored the possibility of a pain clinic for you, to help you more effectively manage your pain? See information here from the NHS about getting help for your pain.

    There's nothing wrong with needing help and certainly nothing wrong with admitting that, it's often the first step towards improving things for yourself, and getting that help may help you to become more happy and independent. 

    Just wondering if you are able to effectively manage your mental health? You didn't say if you currently have any support in place for it but I hope you're managing it well :) 
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  • mikeymikemikeymike Member Posts: 39 Courageous
    hi and welcome, i can relate i suffer from complex regional pain syndrome it took me a long time to accept that i needed help i was lucky in some aspects as i developed this disease when i lived in devon and there was a lot of help available like a good pain clinic. i use mindfulness as well as it does help me relax to some extent when the pain levels start to rise. there is a lot of help out there now for chronic pain so as suggested maybe a different gp can help you a bit more with accessing the help. the damp cold weather plays havoc i know. but stay strong and remember you are important.
    take care and look after yourself 
    mike

  • nam82nam82 Member Posts: 7 Listener
    Hi Ross. Thank you for your comment. My mental health support is ongoing. I only admitted before Christmas that I needed the support. I've had other things happen which hasn't helped regarding family. The last gp I asked to refer me to the pain clinic told me they wouldn't want to see me and refused to send me even after arguing my point. Now when I call the drs I request to see the same Dr. As been passed around different doctors won't help. I am struggling tbh with my.mental health. Was put on sertraline 100mg and I've come off those due to the side effects of vertigo. I do have an appointment on Wednesday so I will discuss pain clinic to her. Thank you. 
  • janer1967janer1967 Member Posts: 9,247 Disability Gamechanger
    Hi and welcome 

    Sorry to hear about your pain 

    You mention not being able to get in bath di you have any aids to help you as there are lots about 

    I suggest you refer yourself for a care needs assessment on the gov website 

    Then an ot will come and make recommendations for any aids or adaptions to help you 

    I hope others on here can help with some suggestions 
  • nam82nam82 Member Posts: 7 Listener
    Hi Mikey. Yes I have tried meditation. Reading doing all the things to help clear and relax my mind. But I do feel if I'm not getting the right support how can I relax when in so much pain. I'm sure doctors think you make things up. We wouldn't ask for so much support if we didn't need it. I have a lady contact me which I forgot to mention from social prescribing. She is going to help.me with aids and adaptions when I move. It's nice to talk hear because at the moment I don't feel like anyone cares about my suffering. It's also nice knowing that I'm not alone. I do feel alone. So thank you for your comments x
  • mikeymikemikeymike Member Posts: 39 Courageous
    glad to hear that you are getting some help and support that is important
    mike
  • nam82nam82 Member Posts: 7 Listener
    @janer1967 I don't at the moment. I am waiting till I find a new home that suits my needs. It is definitely on my to do list. Thank you 
  • Ross_ScopeRoss_Scope Posts: 3,229

    Scope community team

    @nam82

    I hope you are able to get further help and support for your mental health, sometimes it's worth discussing your treament with a health professional if what you have doesn't quite work for you. 

    Please remember too, that there are services out there like Samaritans, who you can contact any time on 116 123, and the Shout service, where you text "Shout" to 85258 to be put through to a trained person to talk to. These will support you any time you need it.
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  • nam82nam82 Member Posts: 7 Listener
    @Ross_Scope thank you me to. It's been hard work with the covid situation as well. Everything is prolonged. And thank you for their number. If I'm been totally honest I will be saying to the Dr next week that if she doesn't help.me with some kind of pain reliever I will be complaining and changing go practice. I have an awful scar across my neck now because of the thyroidectomy I had last year. And I'm not been treated fairly with it. I'm at the hospital alot. X
  • Ross_ScopeRoss_Scope Posts: 3,229

    Scope community team

    Yes, I imagine the pandemic has been a massive inconvenience for you @nam82, much like it has been with many others.

    I think that conversation with your GP is very much needed if you feel as though you deserve better, never hesitate to ask for what you think you need.

    Stay safe.
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  • nam82nam82 Member Posts: 7 Listener
    @Ross_Scope. Yes it's been hard for many other people in the world. Thank you. And stay safe as well. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I have a very supportive GP and i've taken morphine for about 6 years but my pain levels are still through the roof everyday. I've been to the pain clinic several times, tried everything you can think of but for me, nothing helps in the long term. The pain clinic discharged me, they were beyond hopeless, my GP is more supportive.

    There was a time where i was taking almost 30 tablets a day but my pain levels were still through the roof, so i stopped taking a lot of them and i'm now taking 10 a day. I can walk but with extreme pain and when i stand up from sitting down i have to stop still for 10 seconds or so because the pain in my hip is very intense.

    I take Amitriptyline at night, which does help me sleep but makes me feel a little groggy first thing in the morning but for me it's worth it to be able to sleep a little better. Although what works for one, may not work for another. I also have other conditions too, which doesn't help.

    Hopefully the next GP you have will be more understanding but you may also find that fibro is something you live with and you have to find the right balance for you.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
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