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I live with chronic pain and a hearing impairment AMA

42 replies

Deafdeafdeath · 12/08/2018 17:32

I can’t imagine anyone cares, but if you’re interested batter in!

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JellyBears · 12/08/2018 18:53

How would you describe chronic pain? It’s hard to understand when you don’t know the pain etc.

Deafdeafdeath · 12/08/2018 19:01

It depends, I have back pain which ranges from a near constant ache to feeling like someone is drilling into my spine. I have pelvic pain which is more nervy so like electric shocks plus what feels like period pain most of the time. I also have pain on my side from surgical damage which can feel like I’m being torn in two.

Chronic is a deceptive word - it’s not any less painful, it just goes on longer!

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Dapplegrey · 12/08/2018 19:08

Is there any medicine or physio or any treatment which helps the pain?

You have all my sympathy - I've recently had painful dental treatment which got better and certainly wasn't chronic but it was hell while it lasted.
Being in permanent pain must be horrendous. I hope a treatment will be found for you that provides a respite from it all.

Deafdeafdeath · 12/08/2018 19:14

I take nortyptaline which is an anti depressant often used for nerve pain (a lot of the time you hear amitriptaline being used, it’s similar but has more side effects) which seems to help a bit and then cocodomol if things get unbearable.

I’ve tried a lot of different drugs, physio and injections into my sacrum but haven’t found any miracle cure yet. I’ve started doing Pilates which gives some relief but doesn’t fix it.

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W33XXX · 12/08/2018 19:29

Hi I have Hypermobility and fibromyalgia (unfortunately plus a few extra conditions) and since my last pregnancy and developing spd have constant pelvic pain. I see the physio for strengthening exercises but don't feel these are helping whatsoever, take amitriptyline and naproxen to relieve this though only 'dulls' the pain. How do you best manage the pelvic pain?

Do you find your pain 'radiates' throughout the day? It drives me insane, through the constant pain and not knowing what is going to hurt when, also that although one thing hurts in the morning a few hours later something else sore either in place or as well as the original source of pain. Sometimes I think my husband/family/colleagues think I'm at it! Sad

Deafdeafdeath · 12/08/2018 19:34

Im not allowed any NSAIDs so naproxen is out for me - i had voltarol for a while until they realised it should never have been prescribed...

Managing the pelvic pain is a case of not standing for any length of time, not walking too far and taking cocodomol. I use a hot water bottle which doesn’t exactly help but is a bit more comforting. I do think Pilates is making it a bit more comfortable though, I sit at night with a small pilates ball at my sacrum which feels like it takes some pressure off.

One of the osteopaths I saw told me I have hypermobility which is the reason for all the pain but I’m not sure.

Absolutely, my back is constant but very often I’ll suddenly get a crippling pain in my groin or down my leg. In some ways it’s worse than the constant ache because it’s so unpredictable.

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lettuceWrap · 12/08/2018 20:22

You have hypermobility, chronic pain and hearing loss?

Have you been tested for Osteogenesis Imperfecta (OI)? Are your teeth unusually brittle?

I suggest you might want to google the milder subtypes (which are much more common than the subtypes that result in dozens or hundreds of broken bones).

Deafdeafdeath · 12/08/2018 21:04

Hi lettuce

I don’t, I have regular dexa scans. I don’t believe I have hyper mobility, no doctor has ever told me this, just an osteopath so I remain unconvinced.

I had cancer, the treatment caused hearing loss and the pain started after various surgeries and losing a huge amount of weight within a couple of weeks.

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W33XXX · 12/08/2018 21:16

😳 lucky nothing bad happened. I have found it's a bit of a guessing game / trial and error when it comes to reducing/managing the symptoms Sad

My work in particular don't get that either sitting for too long sets it off or being on my feet for too long sets it off Hmm by setting it off I mean it goes from dull achy pain to excruciating pain. Occupational health are trying to put in measures to help stop the pain from becoming excruciating though manager is dragging her heals. I'll definitely have a look into Pilates thank you. Do you do them at home? How do you do it?

If you don't mind me asking how long have you been 'suffering' / living with this? How do you find your care with your GP is with regards to general health when you see them? Are they quite dismissive putting any new symptoms down to your diagnosed condition or do they listen?

Do you find your family life is affected much by your condition?

Sorry I don't know anyone with same conditions so intrigued and have a load of bottled up questions! Blush

Zippea · 12/08/2018 21:23

Have you tried pregablin? I have chronic pain, arthritis, fibromyalgia, Ménière’s disease (including bilateral hearing loss). I didn’t get on too well with gabapentin but was switched to pregablin - it helps with neuropathic pain.

Deafdeafdeath · 12/08/2018 21:27

Have you been through access to work? They’re fab, for example you could get a standing sitting desk which is adjustable. That way you can sit when you need to and Stand when it helps. I have a few things which help at work like in line document holders and a really good chair, they make a massive difference.

I’ve been going to a class specifically for people in pain, it’s brilliant and the tutor (?) is great for helping me adjust stuff so it doesn’t cause me more pain. But I’ve done some “normal” Pilates too and found it pretty good. It’s very gentle, I really would reccomend it.

I’ve had pain since I was 21 which is when I was diagnosed with cancer. Unfortunately when the cancer was gone I was left with a lot of pain and of course the hearing loss. I look at it now as there being a before and a now, but ultamitely it’s a small price to pay to be alive. But there are some days I feel I don’t want to go on and that’s tough.

I live alone, so I still have a pretty dependent relationship with my parents which is hard at times, I’m 30 now but I still need my mum to help with my housework and look out for me despite the fact she’s now 60. I really don’t know where I’d be without my family and friends.

It’s tough, it makes dating tough and it’s just altogether frustrating- but what’s the alternative?

How about you? Do you struggle with looking after your family?

Ask away, it can feel so very isolating when no one understands.

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Deafdeafdeath · 12/08/2018 21:28

Yeah, zip, tried them both. I didn’t get on too well with either. Nortrypatline is the best thing I’ve found so far out of it all, although I’m not pain free. It keeps it under some kind of control.

Menieres is horrible - can hearing aids be used to help?

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Deafdeafdeath · 12/08/2018 21:33

Oh my GP is amazing, she really is the most lovely lady and knows her stuff. When she doesn’t she refers me on straight away.

I’m under a chronic pain team but I don’t find them very helpful. I prefer speaking to my gp than to them because she is a lot more understanding. She finds very nice ways to say that it’s best to learn to live with it and accept pain without being patrionising about it. That’s a real skill!

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W33XXX · 12/08/2018 21:55

Oh my goodness I'm so sorry to hear that. I can only imagine your relief at beating cancer but can kind of understand (having not having gone through cancer battle of course hence the kind of understand) the not wanting to go on. Hugs to you Thanks.

I'll need to ask the physio next time I'm down if there are any local classes. I have two little ones so getting out for classes can be troublesome as husband works away. Though I'm guessing if I learned the basics and went every few weeks you'd be able to do some at home?

Occupational health were fab when they done my assessment and had a chat with me. Recommended correct chair, the inline document thing, a vertical? Mouse and a few other things though manager is dragging her heels for ordering Hmm one of my work colleagues is really understanding, others have no clue, just think I nip away for a loo break/printer etc and one colleague is a complete prat to me - though it's not gone unnoticed by others (except manager who chooses to burry her head in sand!)

That's good you have your family to help out. I do find family are a life saver. My parents help with childcare whilst I am at work so I do feel bad asking for any additional help, they do offer - to which I always decline. I do end up running myself into the ground eventually at which point everyone points out I should have accepted help. Though I feel being young I don't want people doing too much for me? It's a vicious cycle. Some days everything builds up so much (from the pain, pins and needles, swollen joints, down to complete exhaustion) that I have an overwhelming urge to just cry (that heavy feeling in your chest and all worked up?)

With regards to dating, I have said many times if I wasn't already settled down atm I would have no energy to date. No-one seems to appreciate how much it drains you getting yourself built up, dressed, made up to get out that by the time you leave the front door you just want to turn back and go to bed as you are exhausted and in pain.

With regards to friends I don't think I'm as lucky as you as I literally only have a couple left, the rest have slowly disappeared over the years as they have not understood my need to turn down nights out etc in order to recharge. With regards to friends how do you keep the friendship 'alive' if that makes sense? I am scared of losing the last few friends!

Do you find the cold makes your pain worse?

Deafdeafdeath · 12/08/2018 22:11

Getting through treatment was a bit of an anticlimax to be honest. There was a feeling of “I got through it, but whatvhave I got left” because my friends had all graduated and moved on with their lives while I stood still.

Dating is the worst, aside from the whole getting yourself ready to go out, at what point do you tell them all this stuff? It’s a total minefield but also it’s amazing how someone can supposedly love you but just not get it.

I lost a huge chunk of friends when I was ill and absolutely appreciate the ones I’ve got. I don’t have a lot, but the onEs I have are brilliant. I think letting them in is a major thing. Let them help, even if it’s iust asking them to drop off some bread on a day you can’t face getting out of your pjs! I’m pretty honest as well, I think it helps manage expectations! But I’m at the point that I know who I can just tell I’m having a shit day and they’ll not mind. The ones that get annoyed, well are they really friends?

Work is hard, you try so hard to look good and not let colleagues see how you really are. I don’t know about you, but I’m a bit too good at it and they get a shock if they see me without the front.

The doc holder goes over the keyboard so you’re looking at what uoure typing in line with the screen. It means no twisting and I’ve found it to be amazing! Have you tried a tens machine?

I see no difference with the weather - I’m always intrigued when I hear people saying that. Do you have more flare ups in the cold?

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JellyBears · 12/08/2018 23:09

Gosh it must be hard to live with that constant pain. I hope you have things to relive it somewhat.

Deafdeafdeath · 12/08/2018 23:18

distraction and a good balance is about the nearest thing. And very occasionally getting blind drunk.

I know my limits, going out after work 3 days one after the other isn’t a good idea. Being busy both sat and Sunday isn’t an option. But I know how to make it work now to an extent.

I do wish there was a better understanding of chronic pain though, it’s the whole invisible disability thing. I’ve had some right stinkers drawn at me and been challenged on using my blue badge more than once. Purely because I look too well to other people.

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Deafdeafdeath · 13/08/2018 21:02

I just read my own thread and realised how depressing this is Blush

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bananafish81 · 13/08/2018 23:53

Sending Thanks to all those with chronic pain

I suffer from chronic pain following on from a spinal injury when I was younger - have been on long term opioid therapy since I was 19 (am 36 now), have had lots of steroid injections, radiofrequency denervation, spinal surgery and tried the majority of pain meds available to get to a regimen that works and that's acceptable to the GP. Thankfully I have a fantastic pain consultant, who has quite literally been a life saver

I didn't realise the extent to which my medications make a difference to my life, until I had to come off them to do IVF - during my (sadly unsuccessful) pregnancies I had to be off all my opioids - I didn't have any opioid withdrawal or anything like that, but I was in so much pain, it was relentless. I couldn't work of course, just going to a Drs appointment wiped me out, the pain kept me awake for most of the night. I hadn't had fully uncontrolled pain in so long that I really hadn't fully appreciated just how much of an impact the meds make to my quality of life

I also have hypermobility - the spinal injury is the root cause, but associated pelvic pain is very much linked to the hypermobility as well.

I have a fantastic pelvic physio - she teaches other physiotherapists in pelvic pain therapy, and asked if I would consider coming along to a course on pelvic neurodynamics that she was running at Chelsea and Westminster hospital, as a teaching case, because 'they'll never have seen a case as complex as you' in their clinics. She's had two of the leading pelvic physiotherapists from the US assess me, when they were both in the country, and they both said that I was an extraordinarily difficult case

I am very lucky that the opioids do enable me to have a decent quality of life overall - I work, I socialise, I go to yoga. But I am always in pain. I mask very well so colleagues say they had no idea if I tell them, so people often find it hard to get their head around the idea that I am always in pain, to a greater or lesser extent. It's like the volume knob on an amplifier. At 3-4 the noise from the speaker is there and certainly noticeable, but you can sort of get used to it being there in the background if it's on all the time, and you never have complete silence. Sometimes the volume gets whacked right up and you really really notice when it's much much louder, much more unpleasant, impossible to block out

It's incredibly exhausting

bananafish81 · 14/08/2018 00:03

I can heartily recommend two books for pelvic pain in case of interest

Healing Pelvic Pain - Amy Stein
A Headache in the Pelvis - David Wise & Rodney Anderson

(the subtitle "A New Understanding and treatment for prostatitis and chronic pelvic pain syndromes" suggests it's written specifically for male patients, but it very much does address female pelvic pain)

Custom orthotics have massively helped directly with my hypermobile ankles but more importantly helps to stabilise pelvic alignment (along with physio exercises, pilates and manual soft tissue work). That's more just general tinkering round the edges though, doesn't make any kind of dent in the main spinal pain in itself. But important to have a broad set of pain management strategies, even if high dose strong opioids are the mainstay of my pain control

gandalf456 · 14/08/2018 00:05

How bad is your hearing loss? Do you use hearing aids?

Deafdeafdeath · 14/08/2018 08:07


My colleagues are quite unaware how much pain I’m in and aren’t always surprised to see me taking tablets.

I’m going to chat to my pain team about the hypermobiliy - as I said, I’m not completely convinced mainly because the osteopath said all my issues stem from it, not the 3 major surgeries and extensive nerve Damamge that and chemo has caused.

Severe bilateral hearing loss - I can hear but without hearing aids (and often with them) I can’t follow a conversation. I do lipread now which makes life simpler but people are always surprised when I tell them I wear hearing aids.

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bananafish81 · 14/08/2018 08:32

OP have you ever been investigated for endometriosis?

Deafdeafdeath · 14/08/2018 09:17

I had ovarian cancer, so I’ve had extensive surgery. I don’t have endometriosis.

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Deafdeafdeath · 14/08/2018 09:18

*are always surprised

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