Just diagnosed

[Angelaangel]

I've been suffering with pain and symptoms of MS and symptoms of brain damage for over a year now. I finally got to see a neurologist and he straight away diagnosed chronic pain syndrome. I have still to have a brain scan. I really do not understand this condition. Any tips out there how to live with this debilitating condition?

[Hidden]

Sorry you have been diagnosed with this. Could you ask to be referred to a pain clinic to help you with the pain? Sorry I don't have any other suggestions as I suffer from a different condition but the pain clinic have been such a fabulous support to me throughout the last years

[Angelaangel in reply to Hidden]

Hi

I've just been referred to a pain clinic. I really don't see an end to my pain. The muscle spasms are excruciating.

[Hidden in reply to Angelaangel]

Sadly there is nothing that takes 100% of your pain away (at least for most of us). It's doing lots of things that help a little to make the pain manageable for you.

For me for example medication takes 35% of my pain away, mindfulness takes 10% away, warmwater bottle 10%, stretches 10%, tens machine 10%, so now Im only left with 25% of the pain and manage that with rest and pacing.

It also helps a lot to accept your condition and try not to fight it. My pain psychologist has been great with helping me to accept all the losses I have been trough over the last years (los of job, house, independence etc)

Don't give up, hope you find out what helps for you!!

[Sheila-Squirrel]

You said your diagnosis is chronic pain syndrome. Do you mean CRPS? Complex Regional Pain Syndrome. Also previously known as RSD- Reflex Sympathetic Dystrophy. I have CRPS. If you have been diagnosed I’m happy to help with specific issues. I qualified as a nurse so can help from both sides.

[Angelaangel in reply to Sheila-Squirrel]

Hi

I'm not sure. I'm struggling with coming to terms with my diagnosis. I've been told I might not get better, but get worse. I can't walk properly and the pain and vibration is excruciating. I'm at my wits end.

[Sheila-Squirrel in reply to Angelaangel]

Get a referral to physiotherapy as keeping function and range of limbs is one of the most important things with the condition. You also need to see a pain management team or pain specialist. It’s about keeping what you have and not losing more when it comes to mobility. Over time the pain changes. I have flare ups but mostly it’s background pain. The pain is intensified by overdoing things. You have to find your body’s limits. The first year after diagnosis for me was about what I had lost. The second was about what I could still do to use as my baseline. After that it’s been about trying new things and not beating myself up if I can’t do them. Please download “ Complex regional pain syndrome in adults: UK guidelines for diagnosis, referral and management in primary and secondary care” May 2012. It’s a Royal College of Physicians 80 odd page report that is supposed to be used throughout the medical services. I printed off a copy for myself and my GP. You have to become your own expert as time is important to keep moving and control pain. You are at the centre of your treatment. Use your GP to get to the different things you need e.g. if your feet become affected you may need to see a podiatrist. Sorry for long reply, there’s so much more I could say. Hope you’re having a less pain day x

[Sheila-Squirrel]

Forgot to say gentle stretching exercises in water helps with range and pain. I take a foam noodle to the pool and put it in a U shape to sit on either way. It’s good front to back with it between legs so I can dangle and stretch my legs in the water.

Here’s the link for the report. It’s a multidisciplinary report with input from patients and patient representatives.

rcplondon.ac.uk/guidelines-...

Here’s a useful link for pain management while you’re waiting for your appointment. I waited over a year and that isn’t unusual. You need information before that. The Pain Toolkit is brilliant. The link to it is within the text of the link.

nhs.uk/Livewell/Pain/Pages/...