I have a girlfriend who suffers from chronic pain. Pelvic neuralgias, Central sensitization, Interstitial-cystitis and Mast cell activation syndrome.
The Problem
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Sometimes, the future looks bleak and they feel suicidal
Not knowing what will happen next causes anxiety
They will close up / shut down / be non-communicative during flare ups
My question
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What can I say or do to help them live through it? I want to support in the best way.
What I have tried
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Reassurances that i'll stick with them rain or shine
Not visibly freaking out when they close off
Trying to remember the health issues / get educated
Thanks
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SylvanLibrary
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11 Replies
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If it is neuropathic pain similar to IBS (which I think IC is), she could possibly try Ambroxol for her chronic pain. I have Parkinsons, & I use it for nerve pain in my shoulder and to slow my overall progression, but I have heard good reports from those who have used it for pain management with fibromyalgia, IBS & IC. You can find it on Amazon and it could possibly help her, but she should always check with her doctor to see if they're ok with it (mine is). Some research on it below:
DHPSR, have you researched thiamine for Parkinsons and neuropathic pain? The TTFD forms of thiamine such as Lipothiamine offer more absorption through the blood/brain barrier. Benfotiamine offers high absorption in the body outside of the brain. Thiamine requires magnesium for bioactivity. Always consult your health care professional before using any supplement.
Hi, what your girlfriend is going through is awful, are they getting support with their mental health from a pain management service, GP, counselling? If not, first things first I would gently encourage them to seek this sort of help. Sadly there's not much a partner can do to help with the mental and emotional strain of chronic pain other than be there and be reassuring which you're already doing, they need professional help if they're feeling bleak and sometimes suicidal. About 6 months ago I was in a similar way, feeling like it wasn't worth going on. I put off getting help because I didn't see how it could help but trust me, it does.
Pain is two things: a physical sensation and the emotional response, which is automatic and natural. Its our bodies way of telling us there's a threat and motivating us to do something about it. But with chronic pain that emotional response becomes unhelpful and makes things worse. With assistance they can learn to control the emotional response to pain and lessen it to the point where they can cope. I'm on this journey myself and its tough but I no longer have "dark thoughts" and while my flare ups are still intense, I'm able to remain somewhat positive/not depressed through them which I wouldn't have thought possible 6 months ago! I've also found my anxieties about the future have eased - I've become more accepting that this is something I probably will have permanently and may get worse but am able to accept this and not feel hopeless, which again I wouldn't have thought was possible. What's worked for me is counselling and antidepressants. Its certainly worth considering your options and encouraging them to let their GP/specialist know and ask for help. If they're already getting this help, tell whoever is providing it that they're still having problems and need to review it.
Its lovely that you want to be so supportive and are reaching out for ways to help. When it comes to them being non-communicative during a flare up, I would just let them do this. During a flare up of serious pain, no one wants to talk much! Gentle distractions can help - having a pleasant, easy to follow movie or audio book playing in the background helps me get through flares as its something else to focus on. But pain takes up a lot of your mental capacity and social energy so, aside from getting their mental health taken better care of, I would just try not to worry if they're very quiet and just keep them company. Sometimes it's reassuring just to have someone you love near you.
I hope some of this is helpful, and best wishes to you and your girlfriend
I suggest asking her what it is she needs from you because most people in pain have different techniques that work for them and manage the emotions in different ways. (I am not suggesting there are no common themes but we are all individuals). If you haven't already, creating a pain/fatigue plan can be useful as it will help remind you both what you can do that helps and it can be very specific, for the different conditions and pain levels. I am wondering if you could do with some support too. Seeing someone you love in pain and feeling like you can't get help them can be upsetting and frustrating.
Support for yourself from forums such as this one or ones that are specifically for those who support people with chronic conditions or pain. As well as making sure you have people around you who you can chat to when you may find it tough. I have had chronic pain for over 20 years. I am also a counsellor who works with chronic pain. With some conditions it is assumed that carers/loved ones etc need support but not often does that include chronic pain. Living with pain is hard but seeing someone you love in pain can also be hard and for some a feeling of powerlessness. I see how it impacts on those who love and support me.
Hiya, I have a chronic pain problem (central sensitisation of sciatic nerve) and it has put stress on my previous relationships so I can empathise.
Firstly, the fact that you are searching for help on a forum like this is great as it obviously shows how much you care and want to help. And the list of what you are doing to help sounds great.
My personal 'wants' from people would be: reassurance as I get anxious about flare ups. Someone to listen whenever I need to talk about it and not be impatient about it. Someone to help out around the house/everyday life during flare ups. And for them to have a good understanding of my pain experience/problem.
I also advice having a discussion with your partner when she is having a good/not so bad pain day rather than a really bad one in regards to how she wants to be supported. I can always think more logically rather than emotionally when my pain is at a lower level.
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