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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

55 replies

MakeThemEatCake · 01/09/2015 14:36

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!

OP posts:
kali110 · 02/09/2015 16:18

I haven't been to a pain clinic however i have done all the options they would give me.
ThAnkfully my doc is brill if my pain gets worse she will change my painkillers, other docs just said id have to put up with it!

Anyone on here suffer from lupus? There is a chance i could have it found out today i also am at risk of clots Sad

make have you tried topirimate for you migraines? I sufferedfor years, every week for days on end.
You have to come offthe painkillers for few weeks though as you have to break the cycle ( some headaches and migrsines are caused my the painkillers and migraine tablets) mine have improved a lot.
I also take rizatriptan as i have tried i think all the other triptans!

MakeThemEatCake · 02/09/2015 16:39

Oh bollocks I just wrote a very long post addressing a few people and my laptop crashed at the last minute (keeps doing this) and it was gone of course Angry

I have to pop out now with ds but will be back to try again later! Thanks everyone for replies, its good to be able to share experiences.

OP posts:
CanuckBC · 02/09/2015 18:20

You ladies are my people!! I have chronic pain issues complicated by multiple different mental health issues. I have chronic pain disorders that takes stress, either mental or physical and makes my pain worse, it's f'ing fantastic. I learned about my families attitude about me when my sister in law spouted it off one day in conversation, they don't know anyone else with what I have so... Basically I don't have it, umm, ok.

I did go to a pain clinic and it helped significantly. The way you look at your chronic pain and illness can have a significant impact on how bad it is. They had us meditating, working out, walking, talking to a psychologist and more. They also had Drs who specialized in pain to help you get on a good mix of meds, sleep issues fixed, pain, depression etc. It really did help and helped you realize that you could live with your pain. My philosophy as a whole is it is what it is. I have some better days and some days with my migraines whe I have to stay in a dark room. I am a single mom of two boys so I do what I have to for them. We go camping, watersliding and recently went paddle boarding. Some days we hang at home and relax.

It sucks being in chronic pain when people don't believe you and you are having a bad mental health time and that amps up your pain. Them being assholes makes it worse.

I also got botoxed for my migraines and it works like a hot damn in conjunction with topimarate ( generic Topomax). I am also on a variety of other meds for mental health, pain, sleep etc.

MakeThemEatCake · 02/09/2015 21:45

TheFairyCaravan thanks for the info, I'll enquire about Botox. I've had to make headache diaries a couple of times, it was them that convinced the doctors that it is indeed migraine I suffer from due to the severity and specific nature of the symptoms. I've asked a few times to be referred to a neurologist but been told I don't have migraines enough - although they've increased in frequency recently so will ask again. What happens at a necrology appointment? I have health anxiety and am terrified of anything involving scans or looking at my brain! I've always had this fear I've got a brain tumour or aneurysm.

Underbeneath, thanks for sharing about your ME. It sounds really difficult. I have nothing but admiration for you with how you've coped, I think you're really strong and I hear what you're saying about acceptance, that can feel like an impossible mountain to climb.

Hey canuck SmileFlowers sorry to hear about the things you go through, you do sound like you've got an amazing attitude, iys so hard being a parent and in chronic pain, especially with children so young, obvs you can't expect them to understand fully. Although having said that, I've found children can be more accepting Tha adults if you're in pain! I've had some sarcastic, pissed off comments from family members and some downright rude ones too, but kids do seem to believe you when you say it hurts!

Kali I've never heard of topirimate. Just googled it quickly now and it looks like it might be suitable, doesn't interact with any of the other meds I'm on. I'll bring it up at next app, thanks Smile

OP posts:
MakeThemEatCake · 02/09/2015 21:48

Just reread my post, sorry for any typos am on my phone, and just seen it corrected neurology to necrology! dark

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