Chronic Pain Management Discussion / Advice

Peter_88
Peter_88 Online Community Member Posts: 7 Connected
in Neurological impairments and pain

I just wanted to bounce this off people in a similar boat, see if anyone had any advice, had been through similar things and could offer some suggestions or insight.

Background

I’m 36, have chronic pancreatitis, GERD, Barrett’s, IBS, Depression, Restless Leg Syndrome, Meralgia paraesthetica, Focal Chondromalacia Patella, Migraines, Hiatus Hernia, Urinary Retention (Catheter User)


The Pancreatitis was from Gallstones. Gall Bladder removal 2016.

In chronic pain daily, have to take Creon to eat anything, and have frequent daily bouts of flared up pain. Have previously gone through a mountain of painkillers and to be honest none really help, I have a high tolerance to most to the point it is virtually impossible to sedate me for any procedure unless it is via General. I have got to the point over the last 3 years where I have stayed with the same pain medication as it brings flare ups down slightly in the moment to controllable levels, that I can deal with. It doesn’t do much else, but now they are considering removing it.

The medication I currently take is as follows;

Zomorpth, MST Continus, Amitriptyline, Creon, Oromorpth, Esomeprazole, FostAir Inhaler, Jext Adrenaline Pen (for allergy to peanuts), Nitrofuratoin, Salamol Inhaler, Sertraline, Tamsulosin and Topiramate.

These medications I have avoided being messed with for some time because even though they do little in terms of pain relief, they do just enough to bring the daily flares to a manageable level. Without them, I don’t know where to think they would go.

previously have tried - Fentanyl patches, Buprenorphine, Tramadol, Codeine etc.


looking for similar stories and how you manage or have got through things and are managing now? They have ruled out a nerve block because something goes too close to the heart and it is too risky a procedure.

Comments

  • Albus_Scope
    Albus_Scope Posts: 8,327 Scope Online Community Coordinator

    Hi @Peter_88 I'm the same with pain medication, I've grown quite the tolerance to it all now. We unfortunately can't give any medical advice, but we can share out stories, there might be something for you to take to your GP at least.

  • Peter_88
    Peter_88 Online Community Member Posts: 7 Connected
    https://forum.scope.org.uk/discussion/comment/920194#Comment_920194

    Hi, Albus,


    Yes, while I understand the no medical advice and I know my conditions but hopefully by sharing discussions on how people have coped with chronic conditions and pain management over longer terms , it may prove helpful for a few of us.

  • chiarieds
    chiarieds Online Community Member Posts: 16,671 Championing
    edited October 9

    Hi @Peter_88 - I don't have any of your disorders apart from chondromalacia patella either from a ski-ing injury I sustained when I was 13, or due to hypermobile joints, or both!

    I have a little understanding with where you've come from; before my diagnosis of Ehlers-Danlos Syndrome (EDS), my GP tried me with various meds, which I either couldn't tolerate, or simply didn't do anything. It wasn't until later that I read that in people with EDS, NSAIDs, for example, just don't work. I've also been on Fentanyl patches, etc.

    It is helpful to find a pain regime that at least brings your pain to a manageable level, but, it has been found, that whilst opiods can be helpful with acute pain, they're not as good in helping the chronic pain you know suffer, so I presume it's perhaps these your Drs are hoping to discontinue. I hope you're able to discuss this with them, to see if there's anything else they may be able to suggest.

    That aside, as someone who suffers chronic daily pain, it has been found that often different modalities can help, with often a combination of these being the most beneficial, to which I can personally attest. I use gentle exercise, CBD oil, diaphragmatic breathing, distraction & mindfulness mainly; it's a matter of finding which combination of things best help you in addition to any medication, so unfortunately it can be a matter of trial & error.

    You might find some of this post about 'Chronic pain' here helpful, if you haven't already seen it:

    https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

    Some people have also found a referral to a pain clinic can help, so you could ask your Dr about these.

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