CHRONIC PAIN- accepting your diagnosis.
picklemewalnuts · 08/03/2021 14:10
I'm sure I'm not alone- I was diagnosed with Fibromyalgia when my thyroxine, vit D, Iron, Vit B etc were all ruled acceptable but my pain and tiredness remained.
I keep hoping I'll find the missing nutrient, sort out HRT, discover a trigger... and be well again!
I also comb my history to try and pin down when it started.
I head off down rabbit holes about multiple chemical sensitivity etc.
Anyone else want a chinwag about accepting your diagnosis?
MrsAvocet · 08/03/2021 14:32
It's not just us who have this issue - its loved ones as well!
My DH can't get his head around the idea that not everything can be "fixed" and that pain can persist even when bones have been mended or damaged tissue removed. He's an engineer and I think he forgets that human bodies aren't machines where you can mend or replace a broken component and make them as good as new. So he keeps wanting me to get other opinions and "insist" on further interventions etc and it does wear me down a bit. I know he means well, but I wish he'd stop hoping for some miracle cure. I am actually considering some further surgery at the moment but there's lots of pros and cons and it certainly won't be a complete cure even if it helps. And it could possibly make matters worse. But DH has very over optimistic hopes for it. I wish he didn't!
picklemewalnuts · 08/03/2021 14:36
Very true, Mrs!
And actually, that puts you under pressure- are you 'trying hard enough' to get better? Will he cope if you don't improve? My DH has mentioned he's really worried that I won't be able to 'keep up' on holidays. I pointed out that there was more to a holiday than a forced route march around every castle in the region, and that perhaps we could plan holidays that suited both our preferences!
MyVisionsComeFromSoup · 08/03/2021 14:37
I've had umpteen threads on here, as I'm not totally convinced I "just" have fibro, but I do seem to have had everything else checked and ruled out .
But, I'm currently in a really good place in my head, and it would seem that a lot of my pain/brain fog was being made worse by stuff that was going on in the rest of my life, and having dealt with that shit, I'm able to deal better with the health stuff. And annoyingly, all the doctors and physios were right about losing weight helping
Took me along while to get here though.
doadeer · 08/03/2021 14:37
Exact same. My partner keeps saying just think in a few months you'll be better, need to stay optimisic.
My next procedure is to burn the nerves in my back, they eventually grow back.
I've been having 3-4 weeks relief from facet joint injections but it's short lived.
I exercise most days, I put in so much work to being strong but the damage to my facet joints might never fix. It's hugely demoralising.
CMOTDibbler · 08/03/2021 14:42
It was a really key moment for me when I knew that my pain was never going to be better, and that now I just needed to get on and manage my life around it and accept that I would be in pain all the time so I could not do things I wanted and be in pain, or do stuff that was important and still be in pain if that makes sense.
huuuuunnnndderrricks · 08/03/2021 15:46
I have chronic pain , it's tiresome but I'm very much used to it . One part of me always seems to hurt at some point and the rest is low lying pain .. I don't know what it's like to not have pain .. weird isn't it ! I have thyroid disease and have a private medication that helps a bit but not much . I also have a bad back from many riding accidents when young . I saw a fibro nurse a few years agai and she said yes you most probably have it but there is no cause so it doesn't help you much anyway ! 🤷♀️
DianaT1969 · 08/03/2021 16:02
This isn't to derail the serious issues of the thread, but I just wanted to mention that I have seen a lot of comments by people with Fibro in my FB 16:8 intermittent fasting group saying that it helps a lot. It decreases inflammation generally in the body. In case you haven't explored it.
TheLaughingGenome · 08/03/2021 16:12
Medication? I don't feel like paracetamol and ibuprofen do anything really and I'm loathed to take anything else as it makes me trippy!
Zapain, and naproxen or celebrex or high strength ibuprofen, and amitriptyline. On top of adalimumab injections fortnightly.
I try to keep the tablets to a minimum which suggests I am in some sort of denial, like one day I'll just throw them all away and run through fields of wheat.
I also sometimes drink some alcohol for pain relief which is a whole other thread.
Grimbelina · 08/03/2021 16:16
I was (still am!) struggling with this too. Various issues for a long time but then a virus 3 years ago which has left me with CFS/Fibro (holding diagnosis basically as beyond a post-viral diagnosis). I was in denial for a long time and also have periods where I am well... when of course I thought I was better and didn't pace myself and the cycle continues.
However, I am gradually shifting to a place of living with it and learning to take care of myself in a much better way in the hope that I can delay any further deterioration rather than cure myself. My diet is now much more anti-inflammatory, I do a version of intermittent fasting, lots of Vit D and C (amongst other things), I hardly drink, gentle exercise, most importantly dealing with stress and pacing.
Meditation has been helpful (less the actual practise than the ideas behind it which are comforting). The book Full Life Catastrophe by Jon Kabat Zinn has really helped.
I am struggling most with my limited ability to do the things I formally loved including my work, having to reduce social contact etc. as it is so tiring. It is so hard for others to understand too....
MrsAvocet · 08/03/2021 16:38
I've actually found my pain is a bit better since I gave up on the idea of ever being cured. I think I'm less tense and angry about the whole situation now which I'm sure helps to a degree.
That's one of the reasons why I am a bit eary of undergoing the surgery that I've been offered actually - it will put me physically back to square one for a while which I'm not wild about but I think I can handle it, but I'm afraid it will also set me back mentally and that may be harder to deal with.
TheLaughingGenome · 08/03/2021 17:04
I think there's also a pressure put on people who are applying for PIP to seek and obtain a written diagnosis, whether that's right for them or not. The 'rules' of PIP might say you don't you need a diagnosis, but my experience is that claimants need both a formal diagnosis and proof of how this affects their daily activities to have a cat in hell's chance of successfully claiming.
This can set up a lot of psychological conflicts for the claimant and their family members.
And some people really can't afford to forego PIP to save on the stress. For many, it's a passport benefit to other essentials like a blue badge, disabled bus pass, council discounts, assisted bin collection, getting deliveries, being allowed carers present at appointments, etc.
So 'voluntarily' chasing a potentially damaging label becomes part of the disability system, in order to survive financially and practically. It's very fucked up, how much cognitive dissonance people with disabilities are expected to live with.
picklemewalnuts · 08/03/2021 17:06
There are some really interesting points people have mentioned. I'm going to check back and reread, but also...
Several people have mentioned things that have helped- losing weight, reducing inflammation via diet, acceptance. I'm going to start a thread called Chronic Pain: things that helped. I'll suggest it be a 'no comment' thread, that we can list what has helped us, ask each other questions about it, but not argue or disagree about whether it's a 'valid' treatment or not!
greybluegreen · 08/03/2021 17:12
I've just gone through a load of blood tests but am in constant pain. I'm not on any medication and have a fibro/ms diagnosis. I feel absolutely fucking crap, like my skin has three degree burns. Stabbing pains in my bones, constant anxiety and some muscle pain. This has been going on for nearly ten years. I'm completely fed up.
picklemewalnuts · 08/03/2021 17:13
CHRONIC PAIN- things that help. www.mumsnet.com/Talk/general_health/4186690-chronic-pain-things-that-help
picklemewalnuts · 08/03/2021 17:18
@TheLaughingGenome that's so true! I experienced it applying for DLA for children with disabilities. I'd be devastated after completing a form that focussed on everything they couldn't do. The complete opposite to how I manage day to day life.
huuuuunnnndderrricks · 08/03/2021 18:18
Historically the lighter I am the less pain I have but it's not a cure !
That is an awful lot of medication , are you able to work or do anything physical?
I put my pain down to many many riding accidents and putting a lot of stress on my young body . riding , crashing , carrying heavy things all the time .. being dragged along by a naughty pony but u am on the flip of at incredibly strong . i just suffer for days aftwe if i do anythung aside from the usual day to day things !
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