Chronic Pain Society

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PandaWho
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#61
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#61
(Original post by chelseadagg3r)
Off to the doctors on Thursday to ask for a rheumatologist referral. I'm not convinced it's just fibromyalgia. There's indicators in my blood it's something more like rheumatoid arthritis but they've never bothered looking into it. I even have visible damage to both of my knee joints and the surrounding area, one more than the other, as seen on X-rays. It wasn't until my haematologist was like 'woah by the way did you know about xyz in your blood' and I did not, because my GPs had just not considered it important apparently

The last time I saw the haematologist was last year, about October, but everything went up with my brother and my mental health and I just forgot. Hoping I get somewhere with it though
how did this go? did they listen to your concerns?
im at the drs next week to get the results of my bloods and see where to go from there! been taking naproxen 3 times a day and it seemed to help, cos i forgot to take it for 2 days and iv been in pain all day and could barely walk! hopefully my dr can come up with something!
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zoe0712
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#62
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Hi, I finished my GCSEs yesterday and I wanted to thank everyone for your helpful advice - it really made a difference.
I'm intending to stay at my school to start sixth form next year, but I need a little bit of advice. My friends are all aware of my chronic pain as it has come about more in the last couple of years but I don't know how to tell/explain it to new people at school next year (or teachers that I've not had before) because I feel like people often don't understand, so when and how do I tell/explain it to people (especially as it's not usually obvious that I'm in pain)?
(Quick note to add: there is one teacher who is very supportive and understanding of me but many others aren't, and I'm having surgery on my knee this summer (knee has been the main problem for a while) so I will very likely be starting sixth form on crutches with a leg brace.)
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chelseadagg3r
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#63
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#63
(Original post by PandaWho)
how did this go? did they listen to your concerns?
im at the drs next week to get the results of my bloods and see where to go from there! been taking naproxen 3 times a day and it seemed to help, cos i forgot to take it for 2 days and iv been in pain all day and could barely walk! hopefully my dr can come up with something!
Sorry, just saw this A bit yes, a bit no. They think my weight is the cause, and won't listen when I say the pain came about 10 years before the weight did. The weight happened because of the pain and the added fatigue when I ended up with CFS. Saw your post in MHSS though, hopefully you can get a bit more support now :hugs:

(Original post by zoe0712)
Hi, I finished my GCSEs yesterday and I wanted to thank everyone for your helpful advice - it really made a difference.
I'm intending to stay at my school to start sixth form next year, but I need a little bit of advice. My friends are all aware of my chronic pain as it has come about more in the last couple of years but I don't know how to tell/explain it to new people at school next year (or teachers that I've not had before) because I feel like people often don't understand, so when and how do I tell/explain it to people (especially as it's not usually obvious that I'm in pain)?
(Quick note to add: there is one teacher who is very supportive and understanding of me but many others aren't, and I'm having surgery on my knee this summer (knee has been the main problem for a while) so I will very likely be starting sixth form on crutches with a leg brace.)
I'm so glad! Good luck for your results! :hugs:

As weird as it feels to say this, starting sixth form and meeting all these new people while you're wearing a brace and are on crutches might be a good thing. When people can see it, they understand it a bit better. At college, no one understood at all. Not my classmates, friends, nor staff. It wasn't until I spent a few days on crutches because my knee was so bad that it clicked for them. I haven't used them there since, but they've been a lot better about it since they've actually seen it. It could be worth meeting with your great and supportive teacher and maybe the head of sixth form to talk about it, and talk about letting staff know. Sometimes they will just whip an email to the teachers you'll have to let them know of the situation so that you don't have to go about explaining it to them all over and over. Will any of your supportive friends be staying on with you? If so, that'll be really helpful. If people you start to become friends with see how supportive and understanding your other friends are, they could well just follow suit. Sometimes it's a lot easier for people if there's an example to follow. When I'm explaining it to new people, I generally just go over the main bits and explain that everything hurts all the time which I can deal with for the most part, but my back gives me a lot of problems, especially with mobility, and that's not so easy to just grin and bear. If they want to go somewhere, I'll ask a lot of questions about where it is and what the plans are so I know what I can do, and what I can't, and I'll make suggestions to make it a bit easier on me to allow me to be more involved, so maybe if they want to go between a couple of places just asking if we can time it so we can get the bus instead of walking, or just meeting up with them for one part of the activity. Say, if they're going to a few pubs, I'll just meet them at the last few so I don't have to walk miles. I've not really missed anything by that point, but it just makes it a bit easier and I can enjoy myself more. I guess in a lot of cases, you can deal with things as they come up. I don't hide away when I take painkillers anymore, and I let people ask me questions if they want to, so sometimes it comes up then. Sometimes it just comes up in conversation. Other times I just have to come out with it and let them know. I think it's not something to worry about too much for now. Besides, you have a few months yet! I'm going to be in the same position for uni next year. None of them know me, nor the severity of some of my limitations. Unfortunately we have no clue what it's going to be like next year, but I think we'll figure it out as we go along. You have to remember, we've managed up to now!

Really good luck with the surgery, do let us know how it goes!
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zoe0712
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#64
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Thank you for the long reply, your suggestions will come in very useful.
I get what u mean about people understanding more when they see it, but that hasn't completely worked for me as I've been wearing a knee brace for over a year now, although after surgery it will be a bigger hinged brace so that might make it more obvious. I think the problem often is that people just assume it's an injury, which it sort of started off as but it's not going to completely go away (I also suffer from chronic back pain from a condition I've been told nothing can be done for although hardly anyone at school knows about that.)
As for the suggestion about the meeting - I might talk to the head of sixth form (or the person that deals with other sixth form issues) on my induction days which are in less than 2 weeks to try and explain the situation, although I'm not sure the other teacher would be able to be there as it won't be a proper meeting, but I'm sure he'd email the head of sixth form if I needed him to.
Also, most of my friends are staying on too so I'll still have them, although most of my A level choices are different to theirs.
And thank you, I'm hoping it might make things a bit easier in the long run
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PandaWho
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#65
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#65
(Original post by chelseadagg3r)
Sorry, just saw this A bit yes, a bit no. They think my weight is the cause, and won't listen when I say the pain came about 10 years before the weight did. The weight happened because of the pain and the added fatigue when I ended up with CFS. Saw your post in MHSS though, hopefully you can get a bit more support now :hugs:
Yeah i got told so many times my pains are due to my weight, even though it hurts just as much when laid down so i didnt believe that, i get that it wont help butbi dontvthink its the cause! So really hoping they listen to you soon!

Yeah hoping so, its nice to know that theres a reason for whats been going on. Hopefully the upped oain killers helped, although j dont see my 9 and a half hour shift i did today helping and a potential 8 hour shift tomorrow!

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furryface12
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#66
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Anyone had an 'ergonomic assessment' from DSA? They said they'd give me a chair and stuff but wasn't expecting an actual in person assessment-y thing for it.. assuming they'll just take my height and stuff? :dontknow:

Going to colour this thread title too cus I'm feeling extravagant wrong word, can't for the life of me remember what it is...
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Juno
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#67
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(Original post by furryface12)
Anyone had an 'ergonomic assessment' from DSA? They said they'd give me a chair and stuff but wasn't expecting an actual in person assessment-y thing for it.. assuming they'll just take my height and stuff? :dontknow:

Going to colour this thread title too cus I'm feeling extravagant wrong word, can't for the life of me remember what it is...
Yeah, it's just making sure that the things they provide are right for you. So they'll set you up pretty much like this

Image

They may get you to try different chairs, or to try out back supports, foot supports, wrist supports etc.

So they will measure your height, but it's also about your physical proportions. I have short legs and a long torso, so someone else my height would need a different set up to me. People can be pear shaped, or apple, or hourglass etc and that will affect things too.
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PandaWho
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#68
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:sadpanda: my legs are so sore i know full well iv over done it this week, but i still dont understand how my legs and feet hurt more when im laid down instead of stood up. rhis illness is really confusing
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furryface12
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#69
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#69
(Original post by Juno)
Yeah, it's just making sure that the things they provide are right for you. So they'll set you up pretty much like this

Image

They may get you to try different chairs, or to try out back supports, foot supports, wrist supports etc.

So they will measure your height, but it's also about your physical proportions. I have short legs and a long torso, so someone else my height would need a different set up to me. People can be pear shaped, or apple, or hourglass etc and that will affect things too.
Late sorry but thank you so much, that helped a lot! It felt a bit pointless tbh as it all could've been done easily over the phone and me just telling them hip to knee/knee to floor measurements but ah well. It's done, and will hopefully be getting a nice new chair and footstool out of it which'll hopefully help make things a bit easier for me thank you!



In other news... Had to walk quite a way today and sit for a while and owww. Know it's only going to get worse next couple of days and still don't have any decent painkillers and just argh. Oh well just sat with the dog and trying not to squeak every time she touches me but the idea of moving is even worse


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Juno
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#70
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#70
(Original post by furryface12)
Late sorry but thank you so much, that helped a lot! It felt a bit pointless tbh as it all could've been done easily over the phone and me just telling them hip to knee/knee to floor measurements but ah well. It's done, and will hopefully be getting a nice new chair and footstool out of it which'll hopefully help make things a bit easier for me thank you!
Just wait until you get the items! They'll probably insist on coming to show you how to use it, which is completely pointless because you must already know how to use a desk and a chair.
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furryface12
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#71
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(Original post by Juno)
Just wait until you get the items! They'll probably insist on coming to show you how to use it, which is completely pointless because you must already know how to use a desk and a chair.
They said something about that, was like what :lol: ah well, if it makes them happy..
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Juno
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#72
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(Original post by furryface12)
They said something about that, was like what :lol: ah well, if it makes them happy..
Maybe try sitting backwards or upside down to see their reaction

I think it's because a lot of people get new software etc which can be tricky to use and they don't want people to not know how to use them and use them wrongly or not make full use of the features. So if they make everyone have a session to see how to use it, nobody can complain they weren't taught.
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furryface12
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#73
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(Original post by Juno)
Maybe try sitting backwards or upside down to see their reaction

I think it's because a lot of people get new software etc which can be tricky to use and they don't want people to not know how to use them and use them wrongly or not make full use of the features. So if they make everyone have a session to see how to use it, nobody can complain they weren't taught.
'what, you mean this isn't how *you* sit on chairs?!'

Yeah that makes sense. I'm getting a fair bit of software with different things so some training will be helpful, if I went for all the two hour sessions they've said though I'll be dead before I even start the course. Might just be easier to do it myself by trial and error tbh, not got a hope of remembering what they show me anyway.
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zoe0712
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#74
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Hi, I'm 3 weeks away from my surgery now and everything finally seems to be coming together a bit more now. I have a pain clinic appointment on Tuesday and I've been assessed and now have a date to collect custom insoles to try and correct how I walk.
I had my sixth form induction days two weeks ago (at my current school because I'm going to stay on) which went well, although the first day was teambuilding games on inflatables so I was basically watching all day but I didn't get much of a chance to explain what's going on to the sixth form leaders (I told one that I'm having surgery in the summer but she was busy and I didn't have much time so that's all she currently knows) so I've drafted an email to her but now I'm debating whether to send it or not because I always feel like I should just get on with it and not make a big deal about it, but it would probably help if she knew too. Has anyone else been in a similar situation? Any advice? x
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furryface12
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#75
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(Original post by zoe0712)
Hi, I'm 3 weeks away from my surgery now and everything finally seems to be coming together a bit more now. I have a pain clinic appointment on Tuesday and I've been assessed and now have a date to collect custom insoles to try and correct how I walk.
I had my sixth form induction days two weeks ago (at my current school because I'm going to stay on) which went well, although the first day was teambuilding games on inflatables so I was basically watching all day but I didn't get much of a chance to explain what's going on to the sixth form leaders (I told one that I'm having surgery in the summer but she was busy and I didn't have much time so that's all she currently knows) so I've drafted an email to her but now I'm debating whether to send it or not because I always feel like I should just get on with it and not make a big deal about it, but it would probably help if she knew too. Has anyone else been in a similar situation? Any advice? x
Arghh I hate stuff like that but I'd say go for it it's not nice to do but it's not going to make things worse, and may well help a bit. That or you could wait until after your op and let her know then when you have more of an idea of how you'll be in September, it's probably better before though as she may not see it until the start of term otherwise. Don't worry about making a big deal of it, I'm the same but people would rather know! And if they don't then they can't help you. Good luck with the surgery too, hope it helps!
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lucydoyle
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#76
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Hey guys,

I am conducting a questionnaire on the experience of chronic pain in university students for my final year project and would be so grateful if any current students WITH CHRONIC PAIN would be able to take 5 minutes to fill the following questionnaire out:

https://rhulpsychology.eu.qualtrics....J8LTSft3fNuwDj

many thanks
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zoe0712
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#77
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(Original post by furryface12)
Arghh I hate stuff like that but I'd say go for it it's not nice to do but it's not going to make things worse, and may well help a bit. That or you could wait until after your op and let her know then when you have more of an idea of how you'll be in September, it's probably better before though as she may not see it until the start of term otherwise. Don't worry about making a big deal of it, I'm the same but people would rather know! And if they don't then they can't help you. Good luck with the surgery too, hope it helps!
Thank you, I've sent the email now so just waiting for a reply, there's probably not much she can do, but from things other people have said she seems much better than the person that dealt with this kind of stuff last year I finally have a pain clinic appointment tomorrow so I'll post update sometime soon x
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chelseadagg3r
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#78
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#78
(Original post by zoe0712)
Hi, I'm 3 weeks away from my surgery now and everything finally seems to be coming together a bit more now. I have a pain clinic appointment on Tuesday and I've been assessed and now have a date to collect custom insoles to try and correct how I walk.
I had my sixth form induction days two weeks ago (at my current school because I'm going to stay on) which went well, although the first day was teambuilding games on inflatables so I was basically watching all day but I didn't get much of a chance to explain what's going on to the sixth form leaders (I told one that I'm having surgery in the summer but she was busy and I didn't have much time so that's all she currently knows) so I've drafted an email to her but now I'm debating whether to send it or not because I always feel like I should just get on with it and not make a big deal about it, but it would probably help if she knew too. Has anyone else been in a similar situation? Any advice? x
Really good luck with your surgery! Be sure to let us know how it goes. Hopefully the insoles work! I found they helped loads with me, but I have very strong feet from my old dancing days andI could snap them too easily and they wouldn't shell out for the ones I needed because they were over £200 a pair or something Sorry to hear a lot of the first day wasn't very accessible :/ It's a shame when they do so many very physical activities. My college did as well, went to a rollerskating thing. Would definitely be worth emailing. It helps if they know beforehand so they can think about it more and prepare a bit rather than just finding out in September. It definitely wouldn't be making too big a deal of things. I emailed before I started college (both times), and have just emailed the uni I'll be starting at too :hugs:

Hope your pain clinic appointment went well! :heart:
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username2768016
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#79
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Hey guys, I'm new to this society but I've been in the MHoC for about a year now.

I have been diagnosed with fibromyalgia (diagnosis was confirmed on Monday), and Lord it drains you! Today I've had random episodes of pain in random parts of my body, and for the past few hours my stomach and my migraines have flared up again. I hope you're all coping as well as possible *gentle hugs*
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chelseadagg3r
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#80
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(Original post by Emily Porter)
Hey guys, I'm new to this society but I've been in the MHoC for about a year now.

I have been diagnosed with fibromyalgia (diagnosis was confirmed on Monday), and Lord it drains you! Today I've had random episodes of pain in random parts of my body, and for the past few hours my stomach and my migraines have flared up again. I hope you're all coping as well as possible *gentle hugs*
So sorry to hear that I have it too. My migraines have been flaring up again recently, and my stomach was mad yesterday. The thing that always gets me about conditions such as this one is that they like to kick you when you're down. You catch a cold and it'll jump in and make you feel like death, or you get stressed and it does the same. It's a pain lol. You too :hugs:
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