Page 6 | Chronic pain Pub Corner - support thread#4 All Welcome

Akire · 2022-01-31T14:01:00+00:00

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.

Original poster

Akire · 07/02/2022 13:17

It does feel so unfair doesn’t it some people get away nothing wrong while rest of us end up loads different conditions. My pain settled enough to feel like going out for half hour wasn’t a tortuous experience so that’s something!

@HerRoyalHappiness gentle hug

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RainbowZebraWarrior · 07/02/2022 13:52

@MedusasBadHairDay

Went to the hospital last week for something unrelated to my joint pain, got diagnosed with nail psoriasis, turns out that often goes hand in hand with psoriatic arthritis. So know I'm wondering if I need to be talking to the doctor about that too.

I sat here earlier trying to work out if any parts of my body work as they should, as far as I'm aware my skeletal system does what it should (aside from the broken ankle), but everything else appears to be faulty. And I'm so tired of it.

I feel like I can handle the joint hypermobility on it's own. But when you add in the psoriasis, the asthma, the pcos, etc it's just far too much to even think about.

I know what you mean. I could handle the hypermobile element of EDS, but then the osteoarthritis came along, the asthma got worse and my MCAS is getting stupid now.

I've had to ban all fruit. Too much histamine. I thought I'd be fine with a handful of pomegranet seeds Friday. Nope, body had to purge and had to pull over on school run to vomit in shopping bag. My list of safe foods is getting smaller and smaller. I feel like such an unhealthy lump. If one more dietician tells me to eat Kimchi, drink probiotics / kefir or have a smoothie a day I'm gonna scream. My body cannot tolerate any of that shit.

Still calorie counting though. So far I've had a gluten free bacon butty and a litre of water. Got weighed Friday. Was 15 stone 12. Hoping to lose 1.5 lbs a week

Original poster

Akire · 07/02/2022 14:06

I caught myself saying last night but I’ve felt awful all day I deserve this biscuit! Need change mindset but it’s hard not feel like that.

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MedusasBadHairDay · 07/02/2022 14:11

@HerRoyalHappiness

Mt fingers are bad today. So is my hip. I wish I could have just one hour where I didn't feel pain.

People who are pain free have absolutely no idea how lucky they are.

I think I've said this before, but DH had a follow up appointment after some surgery a few years back, during the appointment the consultant asked him to rate his pain, and he said zero. And that blew my mind. I can't imagine feeling zero pain, I forget it was possible. I consider a 2 a really good day.

RainbowZebraWarrior · 07/02/2022 15:15

Zero really is mind blowing. I have this diary which I fill in most days. Lowest pain score I can find is 5. Can recommend it though, it's good to keep track of trends and triggers. And what meds you've had with. And to take to medical appts and scare the doctors by showing them your mad crazy ramblings.. haha

Chronic pain Pub Corner - support thread#4 All Welcome

Original poster

Akire · 07/02/2022 15:18

That’s amazing where did You get book? Looks like do for most conditions

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RainbowZebraWarrior · 07/02/2022 15:23

@Akire yeah, I think it covers a lot of our conditions / symptoms. It's from Amazon £5.ish I think you can get different designs/ named conditions. May also be one called "All my chronic pain shit" or similar...

Original poster

Akire · 07/02/2022 15:27

Just had look but only covers can’t see what like inside nor does it give details. So have take risk

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HerRoyalHappiness · 07/02/2022 15:32

That diary looks ace

HerRoyalHappiness · 07/02/2022 15:35

I've just ordered this one as it will cover all of my conditions. I scrolled to the reviews and found a pic of the inside.

RainbowZebraWarrior · 07/02/2022 15:36

Better look inside mine. I'd you order this one the at least you'll know what you're getting

MedusasBadHairDay · 07/02/2022 15:42

@RainbowZebraWarrior

Better look inside mine. I'd you order this one the at least you'll know what you're getting

I was looking for something to track food and reactions (rather than calorie counting), so that looks useful. Especially with that cover 😂

RainbowZebraWarrior · 07/02/2022 15:50

@MedusasBadHairDay Yeah, I think that's what made me buy it. It's kind how it feels. 'All my shit' And I liked the way it covered the reactions too as I was in a mess. I showed the cover to my Rheumatologist last time I went ant they gave me a rueful smile.

Original poster

Akire · 07/02/2022 15:50

I like EdS one as really need lose weight so can use that keep calorie count as well and weight as incentive.

I’ve ordered EDS and the pain one will keep one and gift one. Really good idea, I have awful days and some manageable days be good track If any pattern or even just see better days will come.

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wildthingsinthenight · 07/02/2022 16:02

@MedusasBadHairDay

Went to the hospital last week for something unrelated to my joint pain, got diagnosed with nail psoriasis, turns out that often goes hand in hand with psoriatic arthritis. So know I'm wondering if I need to be talking to the doctor about that too.

I sat here earlier trying to work out if any parts of my body work as they should, as far as I'm aware my skeletal system does what it should (aside from the broken ankle), but everything else appears to be faulty. And I'm so tired of it.

I feel like I can handle the joint hypermobility on it's own. But when you add in the psoriasis, the asthma, the pcos, etc it's just far too much to even think about.

My dad has PA and it started off in his nails. He has weekly injections that he does himself.

For you xx

Original poster

Akire · 07/02/2022 16:46

How did the phone appointment go @wildthingsinthenight?

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wildthingsinthenight · 07/02/2022 17:39

@Akire

How did the phone appointment go *@wildthingsinthenight*?

Ahh thank you for asking. Well she agreed to change my HRT as this one doesnt suit me and seemed disappointed that it had not had any affect on my pain. She is very casual and vague and I feel she minimises all the time. I started ro launch into all my notes then suddenly decided against it. I said I have so much to discuss that I need a face to face DOUBLE appt asap. Said I'm not prepared to rush through it over the phone. She gave me a face to face appt for next Thursday. So happy about that. I get so kerfuffled on the phone and end up not saying half the stuff I need to. So next week I will go and be ready. I'll not leave there without a referral to someone!

Original poster

Akire · 07/02/2022 17:44

That’s great well done for sticking to your guns. It’s harder to ignore someone face to face. She’s disappointed?! Shame it’s another 10 day wait but still progress.

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RainbowZebraWarrior · 07/02/2022 17:55

@wildthingsinthenight if you don't mind me asking, what pain was your GP hoping HRT would help with? I'm on Evorel Sequi and my GP was very firm regarding my expectations and said it it would do nothing for my pain. She was right. It didn't. But it did get rid of the hot flushes. Sorry I've tracked back but couldn't see anything of detail in any recent posts. Like I say, it will largely depend on what type of pain it is.

wildthingsinthenight · 07/02/2022 19:09

[quote RainbowZebraWarrior]@wildthingsinthenight if you don't mind me asking, what pain was your GP hoping HRT would help with? I'm on Evorel Sequi and my GP was very firm regarding my expectations and said it it would do nothing for my pain. She was right. It didn't. But it did get rid of the hot flushes. Sorry I've tracked back but couldn't see anything of detail in any recent posts. Like I say, it will largely depend on what type of pain it is.[/quote]
She thought my joint/bone pain might improve. She didn't say anything about the nerve pain. I am on Elleste Duet.
I've read menopause can trigger joint pain so I must admit I was curious if it would do anything!

RainbowZebraWarrior · 07/02/2022 19:56

@wildthingsinthenight ah, I see. My GP categorically said it wouldn't help. Ant she was right. I've been on it over a year now, and did tonnes of research. The progesterone is usually responsible for increasing joint pain, oestrogen can help to a degree. I think possibly testosterone can help too. I've stuck with the first HRT I was put on as it got rid of the flushes and I was scared to try too many others as I've had shit side effects with hormonal contraceptives in the past and didn't want to chance owt.

I guess it might depend on the reason for your pain. Some on the Menopause board swear it helped with their generic aches and pains. My cartilage and collagen are both buggered in my joints so while I hoped it might have been life changing, it fell a little short. Still, not having 20 hot flushes a day is one less thing to worry about.

Hope you find best one that works as well as it can for you. It's a minefield. And good luck for your face to face next week. I've got 6 things to discuss written down for my Rheumy. I know how anxiety inducing it is when they just skip over things. I've also got Adult Autism Assessment initial appt this week.

God, sorry, usual bloody ramble from me.

wildthingsinthenight · 07/02/2022 20:50

[quote RainbowZebraWarrior]@wildthingsinthenight ah, I see. My GP categorically said it wouldn't help. Ant she was right. I've been on it over a year now, and did tonnes of research. The progesterone is usually responsible for increasing joint pain, oestrogen can help to a degree. I think possibly testosterone can help too. I've stuck with the first HRT I was put on as it got rid of the flushes and I was scared to try too many others as I've had shit side effects with hormonal contraceptives in the past and didn't want to chance owt.

I guess it might depend on the reason for your pain. Some on the Menopause board swear it helped with their generic aches and pains. My cartilage and collagen are both buggered in my joints so while I hoped it might have been life changing, it fell a little short. Still, not having 20 hot flushes a day is one less thing to worry about.

Hope you find best one that works as well as it can for you. It's a minefield. And good luck for your face to face next week. I've got 6 things to discuss written down for my Rheumy. I know how anxiety inducing it is when they just skip over things. I've also got Adult Autism Assessment initial appt this week.

God, sorry, usual bloody ramble from me.[/quote]
Thank you
Hot flushes are gone and bladder/urinary issues HAD gone but are now creeping back so gp has put dosage up.
I hope your assessment goes well
I have a very long list of notes for next week.

RainbowZebraWarrior · 07/02/2022 21:07

@wildthingsinthenight Thank you and to you too. Funny enough, my bladder issues are back too. I had a note in my diary for a review next week as it would have been a year since my last period, however one came from nowhere. Massively frustrating. I thought I was actually finally in menopause, and now it seems I'm not. I really don't know what to do. I'm almost 51 by the way, and perimenopause probably started at the same time as my pain worsened. That's the reason I had hoped HRT might have helped me with all of my symptoms. But I was diagnosed with osteoarthritis at 48 and Ehlers-Danlos syndrome 6 days before my 50th birthday. It's like falling off a cliff.

Original poster

Akire · 07/02/2022 21:35

Can I ask what bladder issues are? What more nasty perimenopausal things do we have look forward to?

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Original poster

Akire · 07/02/2022 21:36

Bladder being very sensitive and sore but think that’s treatment from consultant the cream. I mean pretty obvious steroid creams going get in and around urethra and can’t be doing much good

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