Chronic pain support thread

[DunravenBadger]

Hi all,

I suffer with joint pain due to hypermobility. I started a thread regarding how to cope with chronic pain and find it quite supportive. I thought there are lots of us on here dealing with chronic pain so thought it may be helpful to have a specific support thread?

How is everyone doing today? My pain isn't too bad today considering how cold and wet it is (normally worse in this weather).

[dementedma]

Recently diagnosed with fibromyalgia so looking out for top tips here.

[DunravenBadger]

@dementedma I will link to my previous thread here:

www.mumsnet.com/Talk/am_i_being_unreasonable/4106437-To-ask-how-you-manage-your-chronic-pain

DH has fibromyalgia. Are you on any medication for it? I'm on pain medication (pregabalin) but wanting to TTC next year so GP gradually weaning me off it and said she doesn't want me on anything when we start trying - obviously that may change if I really can't cope though.

[housemdwaswrong]

Hey, I'll join :)

I have lupus, so joint pain flares. Okay ish at the minute, but been up and down lately. I think restrictions aren't helping as I'm less active.

My go-tos are voltarol and heat for minor niggles. It will be interesting to see what others use.

Good idea for a thread, thank you.

[dementedma]

I'm not on any drugs for it specifically. Take magnesium supplements and vit B complex. Wrist supports when pain is bad. I also lie on an acupressure spiky mat every night which helps with sleep.

[DunravenBadger]

Ooh yes @housemdwaswrong heat helps so much! I have heat pads in my study chair and it's amazing!

@dementedma I've always wanted to try one of those spikey mats. Do you lie on it just before bed or for the whole night?

My wrists are sore this morning. Weirdly I find wrist supports make it worse. I've never really found anything that helps with it. Think I spent too long typing yesterday but I don't really have a choice at the moment.

[dementedma]

I lie on the spiky mat in bed for about half an hour before I go to sleep. Doing it on the floor gives more pressue so sometimes do that during the day. I love it .

[housemdwaswrong]

@dunravenBadger ooh heated seat things. Now that I hadn't considered oddly. Thank you.

How are you all doing after Christmas? Much payback on the pain side of things?

[DunravenBadger]

@housemdwaswrong honestly they're a life changer! I managed to get them through university disability support but would definitely consider buying them myself if I couldn't get them through university.

I'm struggling a lot this week. The cold weather definitely hasn't helped. How is everyone else doing? I intended to go for a walk this afternoon but have been stuck in pharmacy queue for about 30 mins so may not happen at this rate... Never mind, weather should be dry tomorrow so I'll try again tomorrow.

[SingToTheSky]

Great idea :) I was diagnosed with chronic fatigue syndrome and POTS in 2012 and fibromyalgia not long after. I have realised in the last year or two that I have some hypermobility issues too.

I’m frustrated as I was doing well earlier in the year - I had a virus in March (think it was covid but obviously they weren’t testing everyone then) and felt awful for a while after but then actually got a lot fitter than I’d been in years, did small amounts of exercise most days and finally managed to walk more without struggling. But recently it’s all gone backwards and I’m struggling with energy and muscle/joint pain more often.

[blossomtree323]

I have Fibro and CFS. The pain is worst at night and during changes in the seasons/weather. I often struggle to get to sleep and wake feeling shattered.
A couple of years ago I had a food intolerance test done. It turned out that I was intolerant of all dairy and a few other things. After I cut these out my joint pain decreased by about 90%. It still flares horribly when I'm stressed though. I find mild exercise helps.

[HereIAmOnceAgain]

Struggling with my pain. It's been constantly really bad for 4.5 years now. One hell of a flare. 22 years of pain now, diagnosed with Fibromyalgia and CFS at 18. Have multiple chemical sensitives, some hypermobility and increasing amounts of joint pain which I'm waiting to see a specialist for.

Last pregnancy, now 4 year old, really did a number on me, got so much sicker. DH is not helpful at all. We have 3 boys all with SEN. Eldest Adhd & anxiety, younger two autistic. Our middle boy has significant care needs. I deal with all of that on my own. I have a lot of allergies and bad reactions to most medications including every painkiller and anti inflammatory I've ever taken. I have sedating ADs that mean I can sleep most nights, keeps me balanced on the edge being able to go in coping.

[DRC2004]

Please can I join? I have only had issues from this year and no diagnosis so I feel like a bit of an imposter. Things should improve but I’m feeling worn down from the last 8 months. I had no idea what it was like to have daily pain and this has really flagged how much I underestimated what people do alongside pain. I hope that if anything this has given me much needed awareness.

I’ve had constant daily back pain since May but it is gradually getting better I think. I get pain in my mid-back, lower back and pain/numbness in my bum (everything serious ruled out though).

One thing I’ve found tricky is that often two steps forward feels like one step back. As soon as one area is feeling better another area feels painful. I’ve managed to come off most pain medication and substitute a hot water bottle (appreciate that I’m very lucky that my pain was low enough to do this), but now the hot water bottle is giving me the toasted skin syndrome marks so have to find something else!

I’m trying to keep positive and remember that things are already improving and will improve. Mentally I am much better than I was 5 months ago. Even if I can’t ‘fix it’, hope that I can learn more on how to manage.

Sorry for any ignorance, I know I can’t relate to somebody who has been managing pain much more long term but hope I can be here to listen and give people a boost.

[HereIAmOnceAgain]

I think that's a big part of the problem with Chronic pain. I do so much alongside the pain that it looks like I'm not suffering when I'm actually at the point often where every time I walk out of the room away from our DS that I feel my face crumple and start crying. I only physically stop when the exhaustion flattens me or when my muscle start cramping so badly I can't walk much or hold onto things.

@DRC2004 I hope your pain keeps getting better. Have you tried a wheat hot pack instead? Can usually get them at pharmacies. I haven't had any problems using them a lot.

[SingToTheSky]

DRC you’re not an impostor, we were all at the beginning of the journey at some point!

I’m trying to work out whether to try going for a walk again today. Got a lot of reading I want to catch up on!

[DunravenBadger]

@DRC2004 you're very welcome here and definitely not an imposter. I think it's something a lot of us can relate to though. I often feel like maybe my pain isn't bad enough. I have days where I can walk several miles and then days where I can barely do anything. So on the days I can do lots I feel like maybe people are judging me and wondering if I've really got a joint condition.

I'm trying to study today but in a lot of pain. Grateful for my heat pads and may put on my TENS machine in a bit.

[housemdwaswrong]

@drc2004 chronic pain is no respected of person, and itbauxks equally for everyone. 1 month can feel like a year when it gets a grip.

Have you tried these? <a class="break-all" href="https://smile.[[//amazon.co.uk/dp/B078S3QTJ6/ref=cm_sw_r_cp_apa_fabc_QFE7FbP8717Y8?tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">https://amazon.co.uk/dp/B078S3QTJ6/ref=cm_sw_r_cp_apa_fabc_QFE7FbP8717Y8?tag=mumsnet&ascsubtag=mnforum-21]]

An absolute Godsend. Have a look at the reviews and see what you think...plenty of different types out there, but I can vouch for these. :)

[DRC2004]

Just wanted to pop on and say thanks everyone for being so kind, made me tear up a little!! Thanks for the wheat and hot/cold pack recommendations, I will give them a try!

@HereIAmOnceAgain I saw we posted about the same time, it sounds like you have a lot on your plate with your DCs. Hope we can support as I think you’re a superhero for caring for others whilst managing your own difficulties. I’m sorry to hear that you’ve had bad reactions to medications, must be frustrating.

@DunravenBadger What are you studying? I am studying too! ☺️ Sitting at desk and work has been tricky, I’ve also found heat and TENS to be helpful.

Things I’ve tried that have either eased pain or I’ve found comforting in case they help anyone else:
Hot water bottle (soon to be swapped for what bag)
TENS machine
Acupressure mat
Vitamin D, Vitamin B complex, Magnesium
Headspace app
Sports massage
Pilates
Physio
Self-massage with spiky ball

I’m super conscious of being insensitive as I know it will be different for everyone. My friend has a chronic pain condition and gets really fed up of people telling her to ‘just try yoga’. Please call me out if I’m being ignorant!

Does anybody have any sort of resolutions this year related to chronic pain? Whether putting in some work to help ease pain (e.g. strengthening) or taking more time to be kinder to themselves?

[DunravenBadger]

I'm studying Healthcare Science. What about you? Have you got long left? I've still got 2.5 years left - but can officially say I'm due to graduate next year now so that's something

In terms of resolutions, just encouraging myself to walk more / do Yoga most days - so being more active even when I'm not feeling like it.

[DRC2004]

Healthcare Science sounds like such a cool degree! Best of luck with it. ☺️ I am finishing up a PhD (Cog Psychology) and hopefully submitting by April.

If anyone has Netflix, I’ve just seen that Headspace have added a series and there is an episode specifically on pain. It includes information on the mental side of chronic pain and a guided meditation. I’ve used the Pain Course on the Headspace app a few times and found it helpful, if you have Netflix it could be a way to try it out for yourself and see if it’s for you. I was pretty cynical but actually found it really practical and not as ‘woo’ as I wrongly assumed.

[SingToTheSky]

Ooh interesting about Netflix series thanks!

It’s good to read some of you are studying too. I’ve been doing some basic courses since first lockdown, just to get back in the swing of studying. I am starting to feel like I’m ready to think about career since I had to stop work a few years ago. But I also had to stop my OU degree then too. I have a vague idea what I want to do but there’s so much choice and I’m also painfully aware full time is never going to be an option for me realistically, and that could seriously limit my options. So it’s all putting me off making any proper decisions! Life is crazy enough as it is - two autistic DCs (one struggling at school, the other home educated) and a toddler, and DH is now actually much more unwell than me hence not working anymore... but I really need this for me.

I struggle so much with guilt though, anything that I choose to do that makes me tired/in pain I feel like I don’t deserve to use my energy on it if that makes sense?

[DRC2004]

Hi @SingToTheSky - congrats on completing some courses over lockdown! After 2020, I think any extra productivity is a massive effort! My chronic pain has only come on in the last year of studying, and my mental health really suffered because I was frightened I wouldn’t be able to finish after years of work. Sitting at a desk is still the most uncomfortable thing for me, but I’m feeling much more positive.

I do know what you mean about feeling restricted by things that cause pain or wondering if they are worth it. I’ve changed my outlook about this a lot during the last year.

One thing I know is that my back aches when sitting at a desk but I’m not actually doing any damage to my body. I had a physio last year who would ask me how long I could do certain activities for, and her said something along the lines of ‘I’m not actually too interested in the level of pain, I’m interested in whether you can do them and how long for’. At the time this felt pretty heartless, but I understand this a lot more now.

Before all I could focus on was the pain and it felt so consuming, whereas now I focus on what I can do despite it. For me (very fortunately), there isn’t anything that I haven’t been able to do even if I find it harder or I comfortable. That makes me feel so comforting that I can still live my life how I want to, although of course it gets me down that some things that used to be effortless are now through gritted teeth.

For the things that are uncomfortable (eg. desk work), I see it as a work in progress. I hope that my pain will improve, but if it doesn’t I can try lots of pain relief and I consciously put time aside outside of work to try and work on addressing the pain long term (for me: Pilates, sports massage, mental health support). I’m feeling a bit wobbly about returning to studying tomorrow, so I’ve written a long list of things that can help ease my pain when I’m working and a reminder of all the good things I’m doing to try and help my pain outside of work. Sometimes I find it is very good for me as my pain often occupies my mind, and when I manage to get into my work I can sometimes realise I haven’t thought about my pain that much.

Sorry this is turning into a mammoth post! I guess what I’m trying to say is, if there are things you can do to help your pain and you are already doing them, I think that you should go easy on yourself and not feel guilty for things you want to do. You might surprise yourself with what can be done, and it might be helpful to think what you would be doing otherwise. You say that you need this for you, and if the alternative is being in pain anyway and feeling down that you couldn’t do something then it is probably worth it.

I’m aware I’m a little naive as I do not have caring responsibilities so this might be a bit idealistic. But here to chat if you need positivity/encouragement. ☺️