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 am currently recovering from an immersion blender injury. I lost my fingertip and practically severed distal phallanx of my right index finger. I shattered the bone, severed all the tendons and nerves. More about an injury here: www.mumsnet.com/Talk/general_health/4165670-Lost-my-fingertip-in-tons-of-pain-Warning-graphic-content-title-edited-by-MNHQ?pg=1

My wounds got infected, I have been in enormous pain for six weeks unable to function as a housewife and mother of 2,5 yo daughter. Currently I am on hydrocodone, tramadol and novalgine shots, I take atb and they apply also atb shots.

I ask whether there is some possibility of pain relief.

Ouchwtfthistime God, I completely sympathise! I’m either in complete denial or in tears about what’s happening to me. Mine also started at about the same time as yours, and yep, I don’t want to imagine 10 years in the future. I keep cracking on with my physio exercises and Pilates to strengthen my core to attempt to hold myself together but I can’t do any of that when I’m in pain, which means my joints get looser and I go backwards again.

Was hobbling around on crutches for the last few weeks at work, and so many people were so kind and asked me what was wrong, and I was quite honest about it. But at the end of the day, when I’d had to explain what was wrong with me about 20 times, I just came home and cried for ages. Going to have to print out a T-shirt saying “Don’t ask me why I’m on crutches. I’m in denial.”

MinchyP
I think I read your thread a couple of days ago and your injury sounded horrific. I’m so sorry that I don’t have any advice on painkillers as you’re on stronger ones that I can take, but I just wanted to send you some sympathy. I know that’s not any help with the pain though.

Are you in America? Do they have anything like pain clinics specifically for rehabilitating this kind of injury?

MinchyP - that sounds bloody awful. I remember the throbbing pain when I shattered my wrist so I can't even imagine what it must be like with the complexity of your injury. I hope they can at least get you more comfortable with appropriate medication.

TaxTheRatFarms - good to hear I'm not alone with denial, it honestly looks like I'm staring in at someone else's life sometimes. I have days when I have a cry but it's almost like I can't let myself because I'm scared if I start I'll start giving up. There really are times when I think 'this is too hard' and think about giving up work, but apart from the obvious need to earn money, I just cannot contemplate that. I feel like a fraud when my OT tells me how well I'm doing considering my conditions and when applying for PIP I always think they'll turn me down because I'm not bad enough - it's a shock when they reaward it. Not that I should moan about that, I'm grateful for it but it's the confirmation that I am restricted due to my body that gets me. I'm well up for 'Denial' T-shirts 😆

I really want sweet potato fries tonight. Why are those buggers so hard to cut? I'll find an inventive way to get it done I'm sure!

@TaxTheRatFarms thank you much today they changed my bandages, cleaned the wounds and got me some shots more but not much progress. And it hurts all the time. I am in Florida. I am not well versed in local healthcare since I am foreigner here. Never needed. Just gave birth there and now this. At least I can ask.

@Ouchwtfthistime I hope it will get better with the change to antiinflammatory analgetics. Now the pain is realy annoying. Driving me crazy, hurts like hell more than month

Yes, I don’t know what I have but I’ve had chronic knee and hip pain since I was a teenager. It’s not RA or EDS so GPs stopped bothering to find out what it was.

@year5teacher

Yes, I don’t know what I have but I’ve had chronic knee and hip pain since I was a teenager. It’s not RA or EDS so GPs stopped bothering to find out what it was.

That's so frustrating when they do that, just because a diagnosis is difficult doesn't mean they should just give up.

Yes I would, I have hypermobility and hip dysplasia

Oh gosh that sounds horrible @MinchyP

Yes I have major denial. I once tried to convince myself it was all in my head and went cold turkey off my pregabalin. That was not fun and I ended up back on it a week later. Still deny there is anything wrong most days. And on good days I think maybe I'm just making it all up on the bad day.

Can someone remind me not to engage in threads which are filled with ableist bullshit 😣

Had a consult with my new rheumatologist last week, my old professor retired. After an evaluation NMR/MRI (right before Christmas) and blood testing, doc had the delightful news I'm currently "not bad enough" to be eligible for Symponi injections. Inflammation values are currently not high enough. I should be excited. But I'm not, the pain is never gone.

I used the injections before, but we really wanted to try for a second child and my old rheumatologist told me not to bury dreams just because of being chronically ill. The year we tried was filled with periods of pain and other drama. We had to put our dreams away. Then covid started in March and consults just kind of disappeared, had to wait 'til November.

So now... I'm really trying to be optimistic, but I know inflammation levels in my blood will rise again and so will the pain. And then what? Bit more poking and testing and hoping I can inject myself in the future. I must admit I'm incredibily disappointed.

MinchyP I hope your get adequate pain relief very soon. The whole situation is horrible and must be exhausting for you

year5teacher is it possible to write down the history of your pain? I mean like when does it hurt most, what kind of pain is it, do you wake in the night, does exercise help or give more pain, what you have tried, what the result was? Is it bone pain, muscle pain, tendons? Your GP can not in good faith just leave you hanging! Be adamant that you need a referral. Even if it is not RA, the specialist has to have some insight?

@Navilana, it seems that thresholds for being prescribed drugs like Simponi and Imraldi (biologic TNF-a blockers) by Rheumatology Depts are extremely high.

I'm on Imraldi now via Dermatology, and I know it has relieved the pain in my joints, along with gentle physio for all the learned bad habits of muscle clenching around the painful joints.

(I have psoriasis and PsA.)

It's such a bloody hill to climb.

Having said that, my Dermatology Consultant was very caring about my PsA, which is why she offered Adalimumab / Imraldi over another alternative, even though her job is to focus on my skin. I was lucky she was happy to think holistically. It's all coming out of her Department's budget, not Rheumatology's.

I suffer with hyper mobile related joint pain which is ongoing in my right knee and other joints so would welcome a chronic pain outlet

It does seem like there's potential for some long-running chat/advice type threads within a Chronic Pain Board ...

Types and efficacy of pain relief medications
Types of treatment
Getting diagnoses
Applying for PIP

... seem to crop of a lot.

Plus acronyms / abbreviations as a 'sticky'.

Any thoughts yet, @MNHQ? There does seem to be a need and a want.

Feels like been asking for ages but only two weeks. But when everyday is a slog feels like a long time.

@Akire

Feels like been asking for ages but only two weeks. But when everyday is a slog feels like a long time.

I reported the thread to MNHQ and they said they were keeping an eye on it. 🤷‍♀️

We have both chronic pain and fatigue networks where I work and I find them so supportive. Both practical tips and people who understand. What a good idea OP.

Yes. Chronic pain here. Multiple health issues

@DunravenBadger @Navilana thanks for your sympathy . the pain itself I can overcome its just annoying and tiring. but the worst thing is I am literaly unable to function or to do anything bcs of it . this makes me mad. I am switching painmeds trying to find out the best combination but nothing helps I was at the doctor's today once more. the inflammation does not retreat yet

TheLaughingGenome
Thank you for sharing your experience with Imraldi! I think I might go for further examining, as the Symponi worked. Also, I've been struggling with skin problems since a couple of years. After reading your post yesterday I started looking for cause-effect pictures again and it could all be related. (ofcourse will have to wait if the experts agree on that)

I'll pm you, I missed the part where you volunteered to make the list of abbreviations and was working in a notepad on my phone on one . Hope it's not completely doubled!

@Navilana, thank you for helping with the list(s)! I've messaged you back

Thank you @MedusasBadHairDay. Frustrating response given that's been their response on every other thread I've seen about this over the years and we still haven't got a board. Thing is, I think a board might be a bit busier than a single thread as people might not think to come here, but might think to post a topic if there was a board.

@Akire I totally agree that two weeks can feel like forever. Heck sometimes just waiting a day when you're in pain can feel like a long time.

I am finding at the moment it's a tiny bit warmer so the symptoms have eased a tiny bit. Making very slow progress on the medication taper, now 2 thirds of the way there - only 4 months down the line. Might eventually be able to TTC this year (fingers crossed!).

Agreed. There are questions Is like to ask, but I'm reluctant to put them in this thread (lovely as everyone is) because they'd get lost very quickly.

Would it help if we all reported to MNHQ ?

Akire's statistics to me were mind-boggling, but surely it proved to MNHQ, together with our posts, a need for people to express themselves an a dedicated board on MN.

Hoping everyone gets juuuust the right amount of better weather and heat in the coming days.