Hi, my name is Sarahosullivan! I've got small fiber neuropathy, and am struggling. Anyone else?

Sarahosullivan

H I've got small fiber neuropathy and I'm struggling has anyone got it thanks 

Tori_Scope

Welcome to the community @Sarahosullivan How are you doing today? 

I'm sorry to hear that you're struggling with your small fiber neuropathy at the moment. Is this something you receive any support from doctors for? 

I don't have the condition myself, so I can't offer personal experience, but I've renamed your post and moved it into a different category so that other members with similar experiences might be able to find it more easily. 

chiarieds

Hi @Sarahosullivan - welcome to the community, & thank you for joining. As Tori says, I also hope your Drs are supporting you with this. If it's something like pain you're struggling with, your GP may be able to find an alternative med for this, so it's always worth discussing this with them further. Is the cause of your SFN known, as, if it's possible to identify an underlying cause, this may be helpful too.

Sarahosullivan

Chiarieds thankyou I'm not very good with computers or this sit.. I'm going to pain management in Oct and I'm on better  tablets.. I don't have any other under line problems. I'm struggling with diagnose and just is this it now forever.. Sometime the simplist things  I can't do so I'm just crying all the time. I'm om antidepressants. But I don't won't to live like this.. Sorry thank you 

chiarieds

Hi @Sarahosullivan - I'm sorry you have such a wait before you can get to pain management, but it seems like your GP is being supportive in giving you better tablets.

I too have a neurological condition & live with chronic pain. As we're all different, we have to find different things that help us cope, & it seems it's often a combination of modalities that works better. Exercise comes first for me; probably my physio background, yet this is often the first mentioned thing, including on the NHS website. Please see: https://www.nhs.uk/live-well/healthy-body/10-ways-to-ease-pain/    As far as the 2nd point, 'Breathing right' goes, here's a link as to how this should be done: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf

This breathing exercise is another of my mainstays; it helps reduce pain & stress.

There are some other resources here: https://ppa.csp.org.uk/content/links-people-living-pain

As you will see, looking through these links, it's as much about looking after your mental health as any physical problem, e.g. I use distraction (reading, listening to music & gardening mainly, but it's whatever interests you) & mindfulness.

I'm not saying it's easy, but taking small steps in trying is the way forward. Exercise can be just doing some simple exercises that you may enjoy; a little & often is the way to start. Also try thinking about the things you can do, & perhaps try to find ways around doing those things you're finding difficult.

So many of us on the forum live with pain, so you will find ever so much support here too, so please chat here any time.

Tori_Scope

Hi @Sarahosullivan I hope that the information chiarieds has posted above is useful. As they've said, everyone is different and it's often a case of working out what works best for you. It's good to hear that you'll be speaking to the pain management team in October too. 

Have the antidepressants been helping at all? Has your doctor discussed any other options with you, such as talking therapy? This could help you to work through how you've been feeling about your diagnosis, and how this has been affecting you. 

There's no need to apologise, and you're certainly not alone in feeling the way you do. Please remember that you can always contact the Samaritans if you ever need to talk to someone without being judged or told what to do. You don't have to be suicidal to get in touch with them, either. You can call them on 116 123, or email jo@samaritans.org. You can also text SHOUT to 85258 if you'd prefer to chat to someone over text message.

Sarahosullivan

Thank you so much I've only been on antidepressants just over a week some1 is ring me on 15th from talk wirral.. And I've joint mind.. But thank you so much.. How will I know on here if someone has the same als me 

chiarieds

There was a recent post about this @Sarahosullivan - & also if anyone sees yours that also has SFN they may join in with your post. Please see: https://forum.scope.org.uk/discussion/82519/hi-my-name-is-viv50-small-fibre-neuropathy?_ga=2.261232520.421942884.1628719921-462006494.1594920585      

Tori_Scope

It can take a while to get settled on new medication @Sarahosullivan, especially antidepressants, as I'm sure you know, so hang on in there and keep in touch with your doctor It's good to hear that you've followed up with some other avenues of support, too. Let us know how the phone call goes!

I'd encourage you to keep an eye out for posts from people who have the same condition as you. These will most likely be in the chronic pain and disabled people categories, and you can keep an eye out for new members in the welcomes and introductions category too. 

Sarahosullivan

Tori scope.. Thankyou so much x