nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

‘New’ to chronic pain

Dusty_Hammer

Yo, hi.

I’m wondering if anyone has any advice for how you first dealt with not only the chronic pain but also the emotional turmoil of realising you are now limited in certain aspects of life.

Just a bit of background first;

I’m a 32 yr old female. Issues starts about a year ago, and have progressively worsened.

I have what I can only describe as “burning nerves” from my left foot all the way up to the left hand side of my face and all through my left arm and hand. It kind of feels like numbness but also burning it’s extremely hard to describe.

I have not had a diagnosis of anything yet, I am awaiting an MRI of my head and neck. Felt very fobbed off by the neurologist I saw who, after briefly examining me, said “it’s probably nothing” and that was it. Being in pain 24/7 isn’t nothing to me. I am on pain relief but it only takes the edge off.

I am slowly discovering there are things I can no longer do, because I get way too exhausted, or new things I can’t do because of pain and exhaustion (I tried to start learning to drive and completely couldn’t do it, so going to retry in an automatic in a couple of months)

I don’t know. It’s very hard when I feel so isolated with it and fobbed off by medical professionals.

So. Anyway. I’m just wondering how people deal with the mental somersaults required to adjust to living with constant pain, and if anyone has any pointers to thinks to help me relax etc. I do take baths when my muscles go into spasm, as I’m not sure what else to do.

Thanks

Dusty Hammer

Find more posts tagged with

Comments

Dusty_Hammer

@woodbine hi, thanks for your comment. I didn’t know I could ask to see a different neurologist, so that’s really helpful. My GP is great so I would be happy to speak to him.

Also the pain clinic sounds like a good idea, I will also enquire about this as again not something I had thought of.

I do have problems with my mobility some days, sometimes I’m kind of okay so not sure whether I would qualify? I don’t want to take anything if I’m not needing it.

Ami2301

Hi @Dusty_Hammer and welcome to the community! I'm sorry to hear how things have been and currently are for you, it's never easy adjusting to life with chronic pain, or any disability, however you now have a community fully behind you who will support you every step of the way

There are different resources on Scope with information regarding chronic pain, I will mention a couple below as I don't want to overwhelm you with lots of different resources upon meeting you.

Dealing with chronic pain message board - you can browse through many discussions regarding ways to help manage your chronic pain.
Maybe try out our virtual coffee lounge and hopefully will become a good distraction.

Hope these help

Dusty_Hammer

@Ami2301 thank you, yeah I stumbled across this forum and website totally by mistake - but I’m really glad I did. Thank you for the pointers, I’ve already had a look in the coffee lounge.
I will have a look at the dealing with chronic pain posts as well.

Many thanks, happy to be here!

chiarieds

Hi @Dusty_Hammer - & welcome to the community. I deal with daily chronic pain, but will be the first to admit that what works for one person may not necessarily work for another, so it's what works for an individual, & is often a combination of things which at least reduce your pain. First, & foremost I would promote exercise.....this is just what you can do, & which certainly doesn't increase your pain. Even if you can do daily stretches, or exercise sitting down. As a physio student I taught relaxation classes & find these still help me on a daily basis. Please see: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf Yes, it's a breathing exercise, but it does help reduce pain, so I hope you might give it a try.

Other modalities I use are mainly distraction.....whatever takes your mind off how you're feeling whether listening to music, a good book, or looking into a hobby, or pursuing an interest.

Another thing I've tried is cannabidiol (CBD). I've been taking this for 2 years & it does reduce my lower back pain really well, but hasn't helped with my neuropathic pain unfortunately. A little bit of a few things has most definitely helped, I've found. Hoping some of this may help you too.

Jean Eveleigh

You may find this helpful in learning how to pace and goal set - https://www.paintoolkit.org/pain-tools

And also don't forget to allow yourself to grieve your old life and the plans and things you can no longer achieve, being ill is hard work

https://familydoctor.org/grieving-facing-illness-death-and-other-losses/

https://www.socialworktoday.com/archive/070714p18.shtml