Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

Sending gentle hugs all round.

I'm just back from mammoth paediatric consultant appt with DD. Pretty good, nice people. Have referred for urgent Genetics appt as 'strongly suspect, EDS but feel it's too niche for us to diagnose'

I have appt in an hour for initial Adult Autism Assessment so two fairly hefty issues in one day is making my head spin. But needs must, so pushing on. I had late physio rehab last night and got DD back at hosp tomorrow for her Paediatric Physio so I think I'll be locking myself in a cupboard at the weekend.

@Akire yes im still taking my standard Naproxen and codine for normal pain. Just to give an idea- pain will be about 9. I take Naproxen, codine and Gabapentin.( taking amytriptiline 1 at night) pain will drop to about 7 for about 2 hours and then head back up to 9. I then have about 4-6 hours before i can take anymore. These are the times i go in the bath or sleep, but as i said i feel like i just exist between tablets and sleeping.

I think we all feel that way @Redannie118 it seems its just pills, sleep, repeat.

@RainbowZebraWarrior that's a lot in one day! I've no idea how you are managing!

That is huge amount hope you’re got through the assessment ok

@HerRoyalHappiness I think we are all in awe of each other in the sense that we all know what we are struggling with in various ways. It's exhausting, but we know we have to keep on going as the alternative is giving up

Thats very true @RainbowZebraWarrior and we can't give up. Because we matter. Me and @OneNightTimeMenaceStrikesBack were talking about this before. Its so shit that it seems the government thinks so little of us and we're practically ignored and left to fend for ourselves, but we do matter we are important and we arent the scum of the earth some would have people believe.

@Akire the initial assessment was with my GP in order to be properly referred. It went better than my wildest dreams could hope.

She believes I have very strong autistic traits and confirmed that the wait list was at least 2 years. But then told me that because of the huge backlogs, they were able to outsource privately and could have me fully assessed and very likely diagnosed within 4 months. Stunned. Totally stunned. It is a very powerful thing to be believed and have such a positive outcome.

It's so worth fighting. It's been a long and stressful day, but it is always worth fighting to be heard. I also had a phone call back from DDs Paediatrician to say she was being referred to the top Geneticist in the region.

@HerRoyalHappiness and @OneNightTimeMenaceStrikesBack 💜

How’s the day been @Redannie118?

Was going met friend but never got back to me so little disappointing but there you go. Least will pop out tomorrow for an hour.

@RainbowZebraWarrior that's great news about the assessment and DDs referral!
@Akire it's no good when people don't get back to you. I don't get out very often except the school run, so that would really upset me.
I dont have a lot of RL friends though. I am meeting one for lunch on the 4th March though. We've not seen each other for about a year but it's always lively to catch up and like nothing has changed when we do see each other.

Think we all posted the same time! That’s great news @RainbowZebraWarrior she must be able to tell how much impact it is having on you to want to refer and get you down as urgent. Plus your daughter! Time to get out proseco! I know can’t make things right but knowing what you are dealing with and getting some/any support makes such a difference.

@HerRoyalHappiness That is so right in a medical, social, physical and financial way. Everyone wants us to be someone else’s problem. NHS/social care/ benefits/housing access to work/employer. No wonder we start to take it to heart

@Akire thanks. Feels like a little bit of weight lifted. And you are right with everything you say. Sorry to hear your friend didn't get back to you

How is everyone else feeling tonight?

Kidney pain slowly aching away goodness knows what that is. Did have electric bill but when clicked I had got the warm home discount so that’s something. Was wondering to do a food shop or not as everything is so much. How people can feed family 6 for £60 a week I’ve no idea.

Everything is so expensive now it's ridiculous

@Akire we do a family of 4 for about £60 a week. It's creeping up though. We usually do one big shop per fortnight and it would be about £120. Last time is was £140.

Always meal plan so we only buy what's on the list, take advantage of yellow stickers. We've got a big freezer in the garage so can stock in there. Never buy branded, always basics. And I don't buy any curry or pasta sauces, always use tinned tomatoes as a base and get curry spices in bulk. Oh and I check the Lidl website before simon goes and try plan meals around what's on special offer!

I would like to think I'm quite thrifty when it comes to food shopping!

@RainbowZebraWarrior that's excellent news about the referral!

Struggling right now as this is the time my nerve pain is at it's worse. Bloody psoriasis has kicked off again. I've only ever had it 3 times and all have been linked to stress. It's itchy and it looks horrible! Thankfully just on my foot at the moment!

@RainbowZebraWarrior. Before retiring I was part of an Autism Assessment tea. I also was part of a genetics study at Addenbrookes. There is a very definite link (running at about 25%) between EDS and Autism. And yes I am Autistic as is one dd and one ds both with EDS.

Got a doctors appointment booked to see if I can get a referral to a rheumatologist. See if some of my joint pain might be arthritis rather than hypermobility. Nervous about it though, at this point It's rather it was just the hypermobility because that seems easier to manage than arthritis. Tempted to stick my head in the sand and hope the issue just goes away, but know I need to deal with it. Wish me luck.

@MedusasBadHairDay

Got a doctors appointment booked to see if I can get a referral to a rheumatologist. See if some of my joint pain might be arthritis rather than hypermobility. Nervous about it though, at this point It's rather it was just the hypermobility because that seems easier to manage than arthritis. Tempted to stick my head in the sand and hope the issue just goes away, but know I need to deal with it. Wish me luck.

Good luck! I have both hypermobility (EDS) and Osteoarthritis in most joints. If you get a referral to Rheumatology, they will likely appoint you a specialist Rheumatology Physio. If they don't, do ask. I'm on a long term rehabilitation programme called movement medicine and I'm at the hospital gym a few times a week doing very gentle supervised exercises to keep my muscles as strong as possible (since joints and bones are buggered) Also ask Rheumatologist for OT referral (if they are any good, you shouldn't have to ask)

@Gilead that's so fascinating. Last time I took part in one of EDS UKs webinars they said they thought it was running as high as 40% now. I'm on a couple of interesting threads on the new Neurodiverse Mumsnetters board. Lots of people have posted about their links with Autism and other health issues like hypermobility, asthma etc.

@MedusasBadHairDay unfortunately if you have EDS the likelihood is that you will end up with arthritis anyway. Our collagen problems tend to dictate that. My right hip is bone on bone as the cartilage has gone. It’s rather like an elastic band that becomes over stretched as you play with it and eventually it just rots away or snaps.

[quote Gilead]@MedusasBadHairDay unfortunately if you have EDS the likelihood is that you will end up with arthritis anyway. Our collagen problems tend to dictate that. My right hip is bone on bone as the cartilage has gone. It’s rather like an elastic band that becomes over stretched as you play with it and eventually it just rots away or snaps.[/quote]
That's reassuring 🙈 It's never ending isn't it?

Well I saw the doctor and could have hugged her, actually felt like she was listening to me and didn't just dismiss me as too fat to help. She's sending me for blood tests, looking for inflammation markers and also coeliacs (as it runs in the family). I'm not currently showing any coeliacs symptoms but she pointed out that if you have one auto immune condition you may have others. She doesn't think it's arthritis after adding me a few questions about how the pain presents and my history, so wants to hold off on the rheumatologist until we have more info.

[quote Gilead]@MedusasBadHairDay unfortunately if you have EDS the likelihood is that you will end up with arthritis anyway. Our collagen problems tend to dictate that. My right hip is bone on bone as the cartilage has gone. It’s rather like an elastic band that becomes over stretched as you play with it and eventually it just rots away or snaps.[/quote]
That's exactly how I describe it to people! The elastic band theory.

Aye, it's a bastard when you end up with arthritis in your 40s, on top of everything else. Think mine was diagnosed at 46