Page 8 | AIBU in thinking that Mumsnet needs a Chronic Pain Board

Ouchwtfthistime · 2021-02-26T18:04:01+00:00

Because we need to talk about: 1. Denial

ChristMyArse · 28/02/2021 12:18

I have found my people!!

I echo having a specific board - amazing call @Ouchwtfthistime

I have read all the posts and many resonate.

I also have children and find it very difficult to keep smiling all day long for them.

I am lucky in that, with my condition my doctors react very quickly, eg when I spoke to my GP on Friday to get antibiotics I also mentioned I'm not sleeping and he prescribed sleeping tables there and then as he understood why.

I'm also on the list for a spinal stimulator which I'm hoping will help.

To top it off I developed endometriosis a few months ago, and I'm now awaiting surgery to have it removed.

At least if we have a board @MNHQ we can hold hands and support each other!

Becca19962014 · 28/02/2021 14:19

Gabapentin did nothing for me! Even at a dangerous dose the prescribing dr had done the prescription on Wikipedia recommendation and the pharmacist hadn't noticed. It was like having smarties. Literally nothing at all.

Tramadol I reacted really badly to, and, had zero effect on my pain, again like eating smarties.

Only codeine type meds work. I change the times each day I have them slightly to try and slow down becoming tolerant but I dread that day. I know I can't have morphine patches due to my EDS (skin too thin) and liquid isn't recommended can't remember why.

It's wierd how everyone seems to find different things help!

TaraR2020 · 28/02/2021 14:21

Yes a chronic pain board would be great!

Worrysaboutalot · 28/02/2021 14:38

Becca19962014

Yes, Gabapetin and Amitriptyline are mainly best for nerve pain/damage but not good for every person with that problem either.

MrsAvocet · 28/02/2021 14:39

Yes that's true Becca. Different things definitely work better for different people. I find amitriptyline more helpful than gabapentin or pregabalin even though the books say they are "better". And I am completely intolerant of codeine - makes me feel terrible but has no impact on my pain. Tramadol is the single most effective drug for me and I get no side effects, though I recently got told by a pharmacy assistant (not a qualified pharmacist) that I should stop it because "it doesn't work for chronic pain anyway".🙄

EnjoyingTheArmoire · 28/02/2021 14:52

EXACTLY!!

I was in just as much pain when I was an ideal weight as I am now at super fat. Whilst I acknowledge that the weight will not be helping matters, losing it will not magically cure me so stop suggesting it will ffs.

Will finish reading the thread now. As you were, and +1 to the request for a Chronic Pain board please.

EnjoyingTheArmoire · 28/02/2021 14:53

Bloody quote didn't work

TheLaughingGenome · 28/02/2021 15:06

I'd prefer the word PAIN to be writ large in the board name, tbh.

Perhaps 'Chronic Pain and Chronic Conditions' might work?

There's already an Auto Immune Conditions board, btw, which I've found really helpful, which incorporates a lot of the conditions mentioned in this threas such as Rheumatoid Arthritis and Psoriatic Arthritis.

I think it's definitely the PAIN I would appreciate specific discussion of, with other people who actually experience it.

And to be honest, I think more posters will come to the board if it is specifically called (or includes) 'Chronic Pain'.

ChristMyArse · 28/02/2021 15:07

@Becca19962014

Gabapentin did nothing for me! Even at a dangerous dose the prescribing dr had done the prescription on Wikipedia recommendation

and the pharmacist hadn't noticed. It was like having smarties. Literally nothing at all.

Tramadol I reacted really badly to, and, had zero effect on my pain, again like eating smarties.

Only codeine type meds work. I change the times each day I have them slightly to try and slow down becoming tolerant but I dread that day. I know I can't have morphine patches due to my EDS (skin too thin) and liquid isn't recommended can't remember why.

It's wierd how everyone seems to find different things help!

I'm on pregabalin, I can't wee on gabapentin and Amitriptyline doesn't touch me. Maybe worth speaking to your GP and changing xx

Original poster

Ouchwtfthistime · 28/02/2021 15:40

@TheLaughingGenome

I'd prefer the word PAIN to be writ large in the board name, tbh.

Perhaps 'Chronic Pain and Chronic Conditions' might work?

There's already an Auto Immune Conditions board, btw, which I've found really helpful, which incorporates a lot of the conditions mentioned in this threas such as Rheumatoid Arthritis and Psoriatic Arthritis.

I think it's definitely the PAIN I would appreciate specific discussion of, with other people who actually experience it.

And to be honest, I think more posters will come to the board if it is specifically called (or includes) 'Chronic Pain'.

Interesting point @TheLaughingGenome, I can see why it'd be important to have the pain bit in there. Maybe Chronic Pain Conditions?

Talking of pain meds, Tramadol saw me in hospital for 8 hours. I definitely won't be trying that one again 😬

OP posts:

Becca19962014 · 28/02/2021 16:20

Pregabalin I'm allergic too. I was trying to remember the name of it earlier and couldn't!

I was ill for a week with tramadol, fortunately it was pre diabetes and I had a GP who was happy to visit me at home twice a day because I won't go to hospital by choice.

PlantIsTakingOver · 28/02/2021 16:37

Can I ask a question? Why not have a Chronic Illness Support Thread- for anyone living with chronic illness in the General Health Board?

The benefit of one thread (IMHO) is that it becomes more of a supportive community with members getting to know each other over time and offering support.

You could also have other threads as offshoots depending on what comes up.

E.g.
Chronic Illness-newly diagnosed
Chronic Illness-benefits (as in financial not the benefits of!)
Chronic Illness-pregnancy

ChristMyArse · 28/02/2021 16:45

@PlantIsTakingOver

Can I ask a question? Why not have a Chronic Illness Support Thread- for anyone living with chronic illness in the General Health Board?

The benefit of one thread (IMHO) is that it becomes more of a supportive community with members getting to know each other over time and offering support.

You could also have other threads as offshoots depending on what comes up.

E.g.
Chronic Illness-newly diagnosed
Chronic Illness-benefits (as in financial not the benefits of!)
Chronic Illness-pregnancy

I second this also @MNHQ

MonicaGB · 28/02/2021 18:28

I'd support a chronic illness board too. I have ME but suffer with pain alongside other symptoms. With long covid affecting an increasingly large number of women, a board to get support is way more important than some of the other dross there are boards for.

Seriously MN, what is there to think about?

Becca19962014 · 28/02/2021 18:42

@PlantIsTakingOver the reason for not just a thread has been explained in this thread. There have been threads in the past but it's simply too complex for one subject and people get lost in all the "voices" there are many many facets to living with chronic pain which get lost in threads like this. Hence the request for a board.

I've been on threads for chronic illnesses before and new people easily get a bit lost in them (that's not a dig to those who were on the threads!).

SparklingGin · 28/02/2021 19:16

Please let us have a chronic pain board I would find it so valuable.

DunravenBadger · 28/02/2021 19:48

@PlantIsTakingOver I won't repeat what's already been said but if you pop over to page 2 and the start of page 3, I think this question was addressed quite well by PP.

If anyone is interested btw, we do have a thread in the General Health board but like many of us have said, it really would be far more beneficial to have a board. There are just far too many topics to be encompassed and given justice to in one thread.

MedusasBadHairDay · 28/02/2021 20:17

I think as well that long running threads can be a little daunting to join if you haven't been there from the early days. A board would allow members to join in on less established threads, maybe more specialised ones.

Original poster

Ouchwtfthistime · 28/02/2021 20:25

@MedusasBadHairDay

I think as well that long running threads can be a little daunting to join if you haven't been there from the early days. A board would allow members to join in on less established threads, maybe more specialised ones.

Definitely agree with this. I love that people are able to connect and have those long running threads, it's great to see that level of connection, but I would feel like I was intruding if I joined one (I'm not talking about any thread in particular btw). That's probably my issue, but that's how I feel. I'm amazed at the amount of people commenting on here and how much it's already helped me. C'mon Mumsnet, you know it makes sense!

OP posts:

Akire · 28/02/2021 20:32

Where is the long running thread? I saw one for kidney disease but not a general one.

year5teacher · 28/02/2021 20:34

Hi everyone. I thought I’d post a bit about my experience so far. I have posted in General Health before so sorry if it is repetitive!

Some people have posted interesting things about denial and I think that really resonates with me.
I’m currently in the process of getting a diagnosis. I’ve had chronic hip and knee pain for years and years now, and I had blood tests for RA and EDS (I think? Or at least they ruled it out as I’m not hypermobile!), X-rays, and I have also had (useless) physio. What made me throw in the towel last time was when at one GP appointment, the doctor barely looked at me and said “yep it’s muscle pain”. I was so sick of being fobbed off that I just decided not to bother any more. I couldn’t get anywhere with GPS because they had ruled out degenerative conditions and at the time I was about 23 so they weren’t worried. They said it could be bursitis but the symptoms just don’t fit at all.

I’m now 26, and I’m pushing to find out what is wrong with me. I can’t function in the evenings sometimes. It’s not just the hip and knee pain (which encompasses everything from my lower back down when it’s bad), it’s my clothes hurting my skin, feeling sick, IBS symptoms, feeling absolutely exhausted and falling asleep at 7. It feels like I have flu! I have absolutely always thought that these things were just me being poorly adjusted to like... having a body 😂 I assumed everyone felt like that and I just lacked any resilience. I thought my hip and knee pain were a separate thing and that I was just a major wimp and that everyone felt generally unwell and wiped out a fair amount of the time.

I still think I’m being dramatic... I sometimes wonder what other people would think if they felt the way I do on a bad day. Maybe it is normal? I have an appointment the week after next and I just feel really worried even though it’s with a new surgery. I feel like I’ll be wasting their time and actually everyone feels like they’re coming down with flu three times a week...

PlantIsTakingOver · 28/02/2021 20:45

I agree a Board is better. I definitely asked the question a few years back.

I'm keen for it to cover pain and also chronic conditions which may or may not involve pain some/all the time, which a Board could do. I agree a variety of threads is better.

There might be other platforms we could use e.g. Health Unlocked, but it would be great to do it here.

PlantIsTakingOver · 28/02/2021 20:51

@year5teacher I really feel for you. I just started a medication and am reaching a point of tracking good and bad days as while it controls my condition the side effect is a mild version of what you describe. Its so crap not knowing if I am going to feel well or not at the moment. Currently I am trying to figure out the triggers. It must be hard when you don't have a diagnosis.

year5teacher · 28/02/2021 21:28

@PlantIsTakingOver thank you. It is, literally, a pain! I’m sorry to hear that. It’s just so frustrating as it can be fine for a few weeks then it flares up and it doesn’t seem to be specifically triggered by anything, so it’s hard not to feel like I’m exaggerating it to myself. I think I’m realising that most people don’t feel like this unless they’re actually ill.

DunravenBadger · 01/03/2021 06:12

@Akire

Where is the long running thread? I saw one for kidney disease but not a general one.

Less of a general long running thread, more of a who wants a chronic pain board that turned into a bit of a general chat as well.

@PlantIsTakingOver yeah I've seen a few threads over the years asking and it's always been met with the exact same response @MNHQ have given here. I'm starting to feel they have no intention of making one for us. There are definitely other platforms but agree it would be nice here.