Would anyone be interested in a chronic pain board?

[DunravenBadger]

Hi all,

I posted in Site Stuff but MN have recommended I post here. I've seen a couple of threads about this where MN have said they're "interested" in what's being said but nothing ever comes of it. Sometimes posts get lost here in general health and chronic pain / limited mobility doesn't come under "special needs". I thought it would be good if we had a specific board.

Would anyone be interested if MN set up a board specific to chronic pain (or similar if anyone has any alternative suggestions?

[Title edited at OP's request]

I have an interesting mix of understanding from my friends and family.

I’ve lived with or been on holidays with most of our close friends who have actually seen how much the pain has wiped me out, eg. Unable to walk to my bedroom door. Or I’ll push myself too much on a holiday and they’ll see the impact the next day. So I only really get understanding from them. We’re lucky in that we don’t have many ‘new’ friends 😂

Interestingly it’s my family that have a harder time getting it. They seem to think it can still all be fixed. If I just try some more physio or do some more exercise, if I have a flare up they always ask what I did to cause it

It’s been interesting being pregnant and trying to find info on mobility aids that could help with picking baby up, when all I get from my mum is ‘its not like you’re disabled’ and ‘just do some weights before the baby comes and it’ll be fine’.

I’m just hoping I don’t crash and burn with a A, a massive flare up from pushing baby out or B a massive flare up a few weeks later after lifting baby. I will have lots of family help around and DH’s work is very flexible so we will be supported if I do need to be in bed more than most.

How were people immediately post birth? I’m almost more worried about how much my neck, shoulders and head will hurt from pushing than my downstairs

Pinkplantcase I would highly recommend a wrap carrier for when baby comes. I used one with my second son and it made life so much easier.

@PinkPlantCase I was really worried that I would struggle with getting down to baby level post-birth, as it happens, all the msk pain I experienced went post-birth. But I used a sling, and I also got the Stokke Tripp Trapp with the baby seat that’s suitable from birth - this was amazing. It is expensive, but baby is ten this year and is still using the Tripp Trapp - so a great investment!!

@PinkPlantCase congrats on your pregnancy!

My youngest is now 10 and my baby days are over but when I was pregnant with her I was under a specialist because of my pain and they were brilliant and induced me bang on 37 weeks as I just couldn’t walk anymore.

I don’t remember any increase in pain levels due to the birth and having a newborn but I do believe the epidural made my back worse and I had a bad reaction to it.

@PinkPlantCase when is your baby due?

@StealthRoast was your pain specialist helpful at all during your pregnancy or just at the end for the induction? I'm really hoping I'll be seen before we start trying later this year. I'm on the waiting list but I've no idea how long that is.

Sorry about the separate posts, my phone is playing up.

Thanks all, baby due near the start of June, so I’m 24 weeks at the minute

The Tripp Trapp looks good as the baby carrier is quite high! No bending needed

Here's a question I would have asked on the chronic pain board if there was one. I guess I could ask on general health but a specific board would be better as amitriptyline isn't used much for anything other than chronic pain now.
Anyway, the question...
Has anyone noticed any breast changes whilst taking amitriptyline? I swapped from gabapentin to amitriptyline a couple of months ago in the hope it might get me better sleep and I've noticed my breasts are feeling a bit tender. I've just noticed they are kind of lumpy, a bit like they used to go before a period, but I'm post menopausal. Both sides are affected but one more than the other. I've read that breast enlargement can be a side effect of amitriptyline but can't see anything particularly referring to lumpiness.
As it happens, I have a routine screening mammogram booked for the week after next so I've not bothered calling my GP. I doubt I'd get seen by her and referred to the hospital before I'd had my mammogram anyway. I'm not desperately worried though obviously if I didn't already have an appointment I would make one, but would be interested to know if anyone else has experienced similar?

I have had chronic pain for a year and it affects my mental health, I often feel like I'm drowning in Depression and sadness with my pain. Unless people go through this too they just don't understand. I feel so selfish as I know people are suffering and there are a lot of people worse than myself, but I still can't help the way I feel. My Daughter made my Breakfast this morning and washed and dried my hair, she helps with dishes and washing. On bad days I can't put my socks or shoes on and have squeeled with pain. It's good to have people who can understand too.

Hello, I would love to join in, and would really appreciate our own section @MNHQ.

I have fibro, depression, OCD and now, chronic migraine too. I feel constantly knackered and in pain, and my DD has had to live with my DM when she isn't with her DF, for the past few months.

I am so tired all the time, seem to catch every virus going, and pissed off that so many plans I make have to fall by the wayside when I wake up and feel shit yet again.

I know exactly what you mean @OYBBK. I am so bored of explaining to others how shit I feel. I can't help feeling that they must think I am a hypochondriac, which makes me feel even shitter. Does anyone else wish that these conditions were visible, so that people know that one of my "good" days is one of their "need to take the day off work" days.

@TheLaughingGenome

That'd be an interesting thread on a Chronic Pain board - 'Mumsnet fave clichés addressed to those in chronic pain'.

Have you tried yoga?
Maybe relax more (Echoes of 'spa day')
Have you talked to your GP?
Benefits are for those who really need them, not you
Etc

Yep - my not Dparent would always say, 'well, if you lost some weight.....!'

At 5'10" and weighing 9st at that point it was gloriously unhelpful.

Fibro for 20 years here.

Abb - FMS for FibroMyalgia Syndrome

Thank you for suggesting this. It is most welcome.

A chronic pain board would be fabulous! I have hEDS, so chronic pain and fatigue and rampant sublaxing/dislocations. It’s difficult to find people who understand, so it would be great to have somewhere full of like minded/also in pain people

Yes please - Fibro/hip bursitis both sides/frozen shoulder both side here. Regular poster.

God I'd love a place where I can have a bloody good moan and hopefully get some tips. Currently dealing with a dislocated ECU (wrist tendon) which was missed last year when it ruptured, even the sodding wrist surgeon didn't spot it so I've been struggling on. I'm in next week to have a moulded brace made to try and get it back in place. So that's the left wrist, the right wrist already has issues which I exacerbated by breaking and dislocating it last summer simply by falling over. It is such hard work with two wrists fucked; single parent with a dog and a very busy job. Can't drive atm either (not that we can go very far!).

Current diagnoses are: psoriatic arthritis, hEDS, small fibre neuropathy, gerd, multiple allergies, Graves' disease and they say fibro but I don't believe that - simply because every time something hurts it's because I've injured it/it's subluxing or dislocating, they're just shit at getting the diagnosis right ^ see wrist above as a prime example.

I generally just try to crack on in life but this year has just been one medical appointment after the other, sometimes I don't even know who I'm seeing or why. They just keep sending me to things but seem to miss the bleeding obvious. I did stop seeing anyone about 5 years ago because I got so fed up of it all, but was ref'd back to rheumatology last year and it has gone crazy again.

My biggest concerns atm are my wrists, my left hip which clicks in and out (showed physio and all she said was don't do that, showed consultant and he jumped ten foot but had no suggestions as what to do) and the fact I fractured so badly from a standing height fall. I'm 39 ffs, it was dislocated and fractured in 8 places. Between all of the consultants they just point at each other, one told me they weren't concerned because I'm not the right age to have low bone density issues. I've not followed it up because I'm sick to my back teeth of not getting anywhere with anything.

Phew...that was a rant. In good news, I've had a Lycra top and bottoms made by orthotics to try to help with subluxing shoulders, elbows and hips. The bad news is I can't pull it on because of my wrists 😂 Chronic pain sucks. I can't even remember a time when I didn't hurt.

@MrsAvocet

Here's a question I would have asked on the chronic pain board if there was one. I guess I could ask on general health but a specific board would be better as amitriptyline isn't used much for anything other than chronic pain now. Anyway, the question... Has anyone noticed any breast changes whilst taking amitriptyline? I swapped from gabapentin to amitriptyline a couple of months ago in the hope it might get me better sleep and I've noticed my breasts are feeling a bit tender. I've just noticed they are kind of lumpy, a bit like they used to go before a period, but I'm post menopausal. Both sides are affected but one more than the other. I've read that breast enlargement can be a side effect of amitriptyline but can't see anything particularly referring to lumpiness. As it happens, I have a routine screening mammogram booked for the week after next so I've not bothered calling my GP. I doubt I'd get seen by her and referred to the hospital before I'd had my mammogram anyway. I'm not desperately worried though obviously if I didn't already have an appointment I would make one, but would be interested to know if anyone else has experienced similar?

@MrsAvocet I've been taking amitriptyline for about 6 years and haven't noticed any breast changes, I do find it really helps with sleep so I hope you can stick with it

Ouch
“(showed physio and all she said was don't do that, showed consultant and he jumped ten foot but had no suggestions as what to do)”

That sounds so familiar! The first lot of physio I had was some useful strength gaining techniques, but also a lot of “don’t do that! Or that!!” Most frustrating was “you should stop that movement when you feel resistance.” I don’t ever feel resistance - I’m sodding hypermobile! Tore my rotator cuff by stretching my arm behind me and twisting it in a position that shouldn’t technically be possible - but my body didn’t know that! Went to a different physio who taught me how to build up my muscle in that shoulder so at least the muscle would hold it in place better. Much more effective than just telling me not to do something I don’t know how to not do!

Hello, yes please make a designated spot for us all :) When I started reading on Mumsnet, I was pregnant (DS nearly 10 now) and had been struggling with pain/hernia/lumbago for months before getting pregnant. Many times it concerned my back/shoulders/thighs/knees/migraines ... I was diagnosed with Ankylosing Spondylitis (AS?) before DS turned 1. I don't even meet the standard requirements for this lovely foe, but here I am ☺️

I still have trouble some days at getting my head around the fact that, like Akire said, unless I'm constantly trying to find ways to avoid more pain, the days I cope on all fronts are sometimes really fragile.

It's hard. One shouldn't be so hindered in living life to the fullest. At times it can feel like you can never fully "be there."

I hope I translated it all correctly, not sure about lumbago? Sorry, I'm not from the UK 😚

@DunravenBadger

When I booked in at 12 weeks I was assigned a specialist who I saw right through the pregnancy. I was considered high risk anyway because 8 years previous when I was pregnant with ds I developed severe pre-eclampsia and was in hospital from 30 weeks until he was born at 37 weeks but I didn’t get it with dd. Was 25 when I had ds and 33 when i had dd.

The specialist was so supportive of my situation and was able to tweak my meds and promised to induce me if I couldn’t cope which turned out to be the case. We had to stay in hospital for a couple of days after giving birth (naturally) to assess dd which I still feel horribly guilty over but I couldn’t have coped without pain relief throughout those 9 months. She was absolutely fine and is a strapping 10 year old now.

Please try not to worry as most (all?) hospitals should have a specialist who deals with pain/chronic health conditions in pregnancy. You will be referred from your booking in scan.

Hope that helps

I only recently started using heat pads (Decathlon) to ease pain on schouders / back and I've learned they do make a difference and it's easy to keep them on too long. The ones from Decathlon can be stuck on the outside of a light fabric shirt and yet don't turn me into a sweat fest all over (like thermal shirts like for skiing).

@PinkPlantCase Congratulations!

@swampusdonkus I completely understand you feeling like you aren't the mum you wanted to be. Pain and fatigue and discomfort indeed have a ripple effect in many aspects of life.

It's hard to accept my whole life view has changed and pain has crept up and tainted all sorts of things I imagine I would have handled better.

About the Ignorant Comments, people tend to think I wouldn't have AS if I wasn't overweight. Funny, as I recall, I was at my lowest weight (WW and sport every day) and lost 35kg before the "hernia" issues started .

I do mini workouts since, but it's not the same. Obesity makes chronic illness worse, I get that. But it's not the Cause.

Gentle hugs to everyone. This thread (and hopefully future Board) has made me feel very emotional. Recognition is a powerful thing! I'm sorry so many of us deal with chronic issues. I hope we can lean into and learn from eachother 💜

I fell off this thread - this is why a board would be helpful @MNHQ !

I very rarely talk about my CFS/ FMS /OA in real life. Hardly anyone even knows I have it. So it would be really nice to have somewhere where I can reliably have a chat. I’ve managed to get on a pain management course next month - I was meant to do it ages ago but it clashed with work / school pick up, so moving it online is one of few things I can thank Covid for!

I’m a bit odd in that hot weather worsens the FMS - cold weather the OA! Can’t catch a break I swear!

It’s so annoying being sensitive to both extremes isn’t it. I find my fibro much worse in cold weather, I think it’s because I tense up to stop shivering and that makes my muscles sore and my joints just hate it.

But in summer the heat makes my PoTS flare up. Luckily it’s mild and I don’t faint but I hate having to avoid so much.

I’d quite like it to be spring all year round really. Autumn tends to be getting too cold for me and the increasing dark definitely impacts my MH too.

I’m finding it really hard to drag myself out for a walk each day, yesterday I just had a little stroll in the park with DH and our youngest, and I was so shattered after. But if I stay home I find my joints get stiffer really quickly and I get anxious about going out again, my mood worsens etc.

It feels insurmountably complicated sometimes, TBH.

I'm another one who suffers with both extremes of weather. My pain if definitely worse in the cold, but my bad foot swells up like a balloon when it's hot.
We had been seriously considering living in Spain in the Winter and the UK in the Summer when we retire but of course Brexit has put paid to that idea. DH and I would be entitled to Spanish nationality if we chose, but our children wouldn't automatically get it and it all just gets a bit complicated and expensive so I guess I'm going to be stuck with the British winter!

My ms gets a lot worse in the summer, well when it’s hot. That’s generally same for most people with ms. It makes the fatigue worse and spasticity. When my nerve pain gets terrible though heat is the only thing that works! A hot bath and then I’m wiped out for the day, but at least the pain is helped a bit

Yes TaxTheRatFarms, I have no idea what normal range of movement is 🤦🏼‍♀️ Really hope I can get one wrist at least sorted this week, it's so limiting having both hands out of action.

Does anyone else experience severe denial, almost to their detriment? I feel like all of this is happening to someone else. It's been 10 years (since the prem birth of my daughter) since all of this started and I still struggle to get my head around it. I'm slowly but surely becoming more and more limited in what I can do, with various body parts failing but I still just brush everything off as if it's not happening. I get irritated at sympathy from people and tell them I'm fine, it's just life and keep going. I don't like to think of how I may end up, especially as it's not predictable with my conditions but when I consider my deterioration over the last ten years, if I keep going at this rate I'm going to be in a right state.

I'm also trying to make some career decisions at the moment and I'm scared to make a change in case my health continues on this downward path. At present I have a stressful but manageable job with a good pension etc and they make reasonable adjustments, but there's an opportunity which excites me elsewhere. I don't want my health to limit me, but I need to be realistic too. Anybody have any experience/advice they can offer?