To think people sometimes don't understand chronic pain (physical AND mental)

[MakeThemEatCake]

Not really sure if this is the best place to start this thread, but just feel I want to.

I understand that my issues are probably nothing compared to what some people go through - but I have a few health issues and I think people either think I'm making them up, exaggerating, or just need to 'man up'.

I have something bizarre going on with my belly button, it keeps getting infected over and over again. In the last 3 years, 5 courses of antibiotics have failed to get rid of it, plus antibiotic and anti fungal cream. Above my navel its all swollen, I had a scan and was told I have an abscess first then an umbilical hernia but thats not what the lump is - she said maybe a lipoma(?). I now have to see a surgeon soon to arrange an investigatory op.
All through the night I have pain where this lump is and around it, I can't run too well, can't do much exercise and as it's constantly infected it's so sore in my belly button and is 'icky' which makes me self conscious :(

I also get very very bad migraines, a couple a week usually. I also have carpal tunnel syndrome in both hands and suffer numbness and pain. I had an op on one of the hands a few years ago but its coming back gradually.

I suffer from anxiety and depression too and am regularly 'in pain' there even if others can't see it.

People are sick of me, my mum is fed up of me 'always having something wrong' with me, others when I say my hernia is playing up or have a migraine say 'Oh that again' and I can tell they think I'm exaggerating.

I think if it's a short term illness or accident people are more understanding but when things are chronic and long lasting, I've found people get impatient and I do feel a burden because my problems have been going on for bloody ages.

What I think I'm getting at is, am I being unreasonable to get annoyed that people don't understand I'm often in pain and I'm not making it up, or trying to get attention and that they should be a bit kinder!!!?

Sorry this is so long!

dont dismiss applying for pip.i applied myself on the main basis of Bipolar and got it without any medical,enhanced rate for 5 years

apply you may be suprised

Chronic pain is awful.

I'm suffering with spd at the moment and in the past I've had injuries that laid me up for several months. I was lucky enough to recover, and hopefully I'll recover again, but it showed me how bloody miserable constant pain is. I wouldn't wish it on anyone - it grinds you right down.

You have my sympathies.

I agree, even DH doesn't understand the amount of pain I'm in.

I've got severe SPD, had it 19 years and had 6 major surgeries on my pelvis. I've also, got arthritis in my spine, hip impingement, labral tears in both hips, fibromyalgia, severe migraine (around 15 a month I have Botox), carpal tunnel syndrome, ulnar nerve compression in both arms and hyper mobility.

My FIL said to me "have you tried not taking your tablets and seeing how you are without?" .

I had a nurse telling me i shouldn't be taking painkillers everyday!
I told her it was that or i wasn't able to get up or walk.
She asked me if id tried physio or heat patches er yes amazingly i have.

My mom does try, but tells me to ignore the pain or go for a walk!
Erm i can't walk or my head is that bed i can't even lift it off the pillow!!
I'm back on esa again.
I tried to go back to work but it was not a good idea.
I'm trying to challenge pip but i think i'm going to give up.
Badtards got hold off my notes that they shouldn't have doc is not happy. I feel violated.
Do they think people would seriously go through this for a couple of quid a week???

Also at home on this thread. Thankfully I had some active decades, but in the last few years I have been diagnosed with cauda equina syndrome - (fubar'd the discs at the bottom of my spine,) spinal stenosis - osteoarthrisits, fibromyalgia and ME. I look the picture of health! The pain, brainfog, etc do drag me down sometimes - anyone with any long term illness is prone to depression, but my GP agrees I'm not actually clinically depressed, just fed up of being ill. However, all that is seen is me, overweight, on the sofa. Told to take a couple of aspirin and get out for a walk. It doesn't help that hubby had major cardiac surgery 2 years ago, and is again very fit and active. He doesn't understand my 'refusal' to get better.
I've been kicked out of and sidelined in some groups I belonged to, as I was unreliable and not fun enough to be with whilst waiting for diagnoses, also I can't drive far or be anywhere noisy. Thanks for the support there, girls!
I had to laugh at myself the other day, tho. An occupational therapist came to help advise me with bathroom aids - step, grab rail, etc. She advised I also apply for a blue badge. I said, but I'm not disab...umm, wait a minute, yes I am! If I don't recognise it in myself, what hope is there!
Hope it's ok to put a link
motherinlawsblog.blogspot.co.uk/

Some of you are mocking the idea of stepping down the painkillers but for chronic pain they're sometimes not the best option. My husband has two herniated discs in his spine following an assault in his teens and has not had a pain-free day in over twenty years since then.

He does have strong medication for particularly bad days when his back is in spasm but otherwise prefers to try to manage his pain using other methods, some of which he learned at a chronic pain clinic. Over-reliance on medication can lead to a sort of descending spiral of dependence and for some people the side-effects of painkillers - the constant mental fog, irritability, forgetfulness, inability to concentrate etc, as well as other physical symptoms like constipation make their lives even more difficult.

I'm not for a minute saying anyone here should just do without their tablets, by the way. Just that there are other approaches which can be used as well.

, and to everyone on this thread.

I get when I state how little medication I am on. They then do again when I explain pain killers don't work on me.

Oh wow, I am sorry to read about people's experiences and what they go through. Sending lots of to you all.

Interesting to see that others suffer with 'get a bit of exercise' relatives. I know they care, I know they want to help, but it often makes me feel guilty for the things I have wrong with me.

Its hard for my son too, as he's got older its a bit easier but he hates when I have a migraine. All I can do is lie down with an ice pack over my head and be next to an open window. I can't even talk to him as my speech gets affected and I slur my words.
TheFairyCaravan you mentioned Botox, did you get referred for that? I've heard great things about it for migraine, I'm on beta blockers as a preventative (they make me exhausted ) but can't take any Triptan medication due to the antidepressants I'm on so rely on codeine.

It helps to have a moan about all this, I talk to NO ONE in rl about this aspect of me as nobody wants to hear it! I even worry about annoying my counsellor! Its lovely to hear from others, feel free to vent on this thread

My last pregnancy knackered my back, herniated disc which went undiagnosed for two years and caused all sorts of issues. Had surgery and everyone expects a miracle recovery and are just fed up when I'm still in pain. I am a little better, I don't quite get so bad but it's maybe 90% still there - I'm in a bad patch at the moment, it's lasted a few months now. Pain relief is limited and no Dr will give me anything more effective so I dropped everything but codeine as needed. However having effective and long term pain relief is really helpful in breaking the cycle of pain = spasm = more pain. I've lost a lot of friends but two of the most understanding have suffered with long term pain themselves. In fact they are more sympathetic as their pain was isolated in a particular part of their bodies so didn't effect their walking and sitting - I struggle with mobility and am mourning the loss of being free to do so much or the limits on what I would want to do.

No chance of disibility benefits as I can mostly dress and wash myself but I know my ability to work is severely restricted. I'm also look young and sit in the priority seats if needed, I even carry a fold up walking stick occasionally but I'm too embarrassed to use it. My husband acts like I'm making it up and am just using it as an excuse to be lazy - I'm a SAHM with three voluntary jobs and do schools runs of up to 2 hours a day, even when in agony. I'm also suffering with depression and that adds so much to the "laziness" as its so hard to overcome the feeling that there's no point in doing anything.

Oh pasta my heart goes out to you, that's so upsetting. Your dh just doesn't understand, he simply can't put himself in your shoes and see what you're going through and what you struggle with each day. Is there anything that can be done in the way of physical therapy? (sorry if silly question)
Can anyone help you with the school runs?

I think you're doing amazingly

Oh also, I know that feeling of 'laziness' that comes with depression, its not a nice place to be. You're def not alone though.

When does not understanding move over the line to using a disability to criticize and humiliation? When does it move from not understanding to putting strain on to a disabled woman so she becomes isolated due to exhaustion of daily living?
www.refuge.org.uk/get-help-now/help-for-women/help-for-disabled-women/

MakeThemEatCake wrt the Botox, I was referred to a neurologist after suffering with migraines frequently for a couple of years. My GP had tried a lot of preventatives, I still take them, but the migraines were so severe and so frequent that I couldn't cope.

I had to keep a headache diary for 3 months, and after they studied it they decided I was eligible for the Botox. I've had 5 treatments now, I still get the migraines, but they're less severe and more manageable now.

I haven't experienced this (the not understanding) but we live in an extremely remote area of South America and where we live everyone is cloyingly genuinely sympathetic to anything anyone is going through. I collapsed in the bank not long ago and when friends found out what was wrong with me they were aghast and smothering hugely sympathetic.

Until that point, very few people knew just how ill I am (only DH, our housekeeper and our foreman) as I don't feel the need to talk about it, I really don't want anyone's sympathy and their understanding is completely irrelevant to me, so people were pretty shocked to find out.

I think everyone should keep their beam out of other's business, YANBU.

I have had chronic neck and back pain since I was 18. I'm mid 40s now and I t hurts everyday. Most days I put up and shut up because people don't want to hear about it and actually you just have to carry on with life. Sometimes it gets so bad though that I can't sleep or work and I lie there crying - not necessarily from the pain itself but from the frustration of no relief IYKWIM?

Someone up thread said painkillers don't work on them, I am the same so I rarely bother now. The only thing that helps is diazepam but the doctor is so worried about it being addictive the most they'll give is 3 days worth about once or twice a year!

I can highly recommend a pain relief clinic. If you haven't been ask for a referral.

I was sent to a pain clinic, it had a psychologist, an OT and physio. Anyway I have seen a world expert in my condition, they know we feel more pain and don't respond to locals and other pain killer drugs, currently they don't know why.

At the pain clinic I went to I saw a consultant who specialised in pain relief. He assessed me and only then did I see others for treatment.
And psychologists can help as how you feel psychologically does have an impact on ho you feel your pain.

I was sent to a pain clinic. I saw a waste of space who pushed me to walk every day, no matter how bad I felt. I just became more and more ill, and my back gave me more and more pain, my heart rate got higher and higher. Eventually one day my heart rate went over the safe maximum for me (164) , and stayed over 100 bpm for 10 hours, even when lying down (usually 63). I thought I'd had it! I refused to have anything more to do with her. Some people who don't believe we are ill can upset us, some can damn near kill us!

Sad to read about all these unsupportive husbands The one you think you can rely on to understand. for you all

YANBU I've had ME/CFS for just over a year and I feel like I'm always reminding people. I hate doing that and I'm sure they think I'm moaning on or exaggerating but a lot of people seem to forget I have limits now that I need to stick to. I suppose it's because it's invisible. Plus they don't see the bad days because then I'm hidden away resting. So it's partly my fault for hiding it. I'm still trying to adjust tbh so it's all confusing. Even the GP has left me to it.

Under Really good to hear from someone who recovered from ME. It really does give me hope so thank you for sharing. Very pleased you got better.

to anyone with chronic illness. It's hard work.

YY to the exaggerating. I always get "oh, it can't be THAT bad", which really frustrates me because it's like...I'm 26. I don't WANT to be in pain everyday. I used to do so many activities and now I can't do them thanks to the pain. People think make it up as an excuse to get out of things/be lazy but it couldn't be further from the truth.

I hurt standing up in one spot for long periods, so I struggle doing things like washing up or cooking over a stove. If I move around a little, it helps, but then again if I do too much movement, it hurts more! It's a struggle to find the middle ground and when I'm at work and stop doing things for a bit to ease the pain, certain colleagues just tell me to get a move on/not be so lazy. Thankfully my managers are more understanding but I hate being told I'm lazy/slacking

Waggle and cake, ME isn't something you can fight. Think of it like a skid in a car- if you push the wheel against it, you'll skid further. If you drive into the skid you'll get control of your wheels.

For me my healing started when I absolutely accepted that I was very, very ill.
I drew a circle of wellness around myself and I strictly patrolled the boundary of my circle. Anything or anyone who wasn't 100% onboard with my recovery was ejected.

I had no contact with unhelpful family members, including my mother. I had no hesitation to stop listening to shite people came out with.
I changed my doctor to one who specialised in ME and CFS.

I rested, had cold and hot baths (with black pepper oil for muscle pain, and lavender for relaxation) walked outside once a week, (whenever I could) and did not read, or talk to anyone for days. I got my groceries delivered. I carried money for taxis if I was out and about and was unapologetic if I had to leave (even in the first few minutes of something)

I was really strict with my diet, and went on a candida elimination diet. I patrolled my thoughts, stopping myself from any downward cycles.

I got a lot of art books, and looked at beauty.
I decided to use my ME as a rebirth. I focussed on what I wanted, and dropped everything not on that list.

Getting well was my only job for 8 long years, from 22 till 30. But 8 years isn't forever, and I learnt a lot, about myself, and about how the world actually works, from being so ill.

I have a friend who fights her ME, didn't and won't accept it and she still is off work with crashing fatigue 25 years later. Now that's longer than most prison sentences, even for murder!

There is hope, but you must be ruthless about cutting away from everyone and anything that isn't in your nurturing circle.

Invest in yourself, buy help, drop everything that isn't helping, and accecpt your situation- your journey to health starts from where you are exactly, and right now.

to everyone!