Chronic Pain Society

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chelseadagg3r
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#41
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#41
(Original post by Tiger Rag)
Have you applied for a bus pas and a blue badge? You can normally get them if you have long term walking difficulties.
Working on those and PIP at the moment. Not so confident though because they always assume because I can walk like 5-10 metres to get from the waiting room to consultation room that it means I'm lying when I say I can't walk more than about 30 A lot of the time
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Tiger Rag
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#42
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(Original post by chelseadagg3r)
Working on those and PIP at the moment. Not so confident though because they always assume because I can walk like 5-10 metres to get from the waiting room to consultation room that it means I'm lying when I say I can't walk more than about 30 A lot of the time
Good luck with that. They did similar with me - because I can get to my parents house (I used to live there) I have no problems getting around safely. I was given a home visit because I wouldn't be able to get an assessment centre because I can't get anywhere that's an unfamiliar place, safely.
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chelseadagg3r
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#43
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(Original post by Tiger Rag)
Good luck with that. They did similar with me - because I can get to my parents house (I used to live there) I have no problems getting around safely. I was given a home visit because I wouldn't be able to get an assessment centre because I can't get anywhere that's an unfamiliar place, safely.
it's just so ridiculous honestly
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Tiger Rag
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#44
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#44
(Original post by chelseadagg3r)
it's just so ridiculous honestly
Quite. I did a reconsideration and got fully mobility. Utterly ridiculous.

I've now started getting pains in my hands again. Especially my thumb. That was fine until I fell over in January. Urgh.
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PandaWho
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#45
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#45
(Original post by chelseadagg3r)
Working on those and PIP at the moment. Not so confident though because they always assume because I can walk like 5-10 metres to get from the waiting room to consultation room that it means I'm lying when I say I can't walk more than about 30 A lot of the time
For a bus pass just get your dr to write a letter thats what we did to get my ex one :yes:

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PandaWho
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#46
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So went to the drs today to discussmy pain and fatigue, and concerns about fibromyalgia (a nurse questioned if i had it when i went to minor injury with my shoulder once) and last time i went to a dr about she very bluntly said "we dont test for it" and pretty much kicked me out.
So i didnt know what to expect today, but the dr i saw was lovely asked questions and explained about fibro and that theres not a test that can be done to say for sure, but shes asked for my bloods to be checked and then go from there depending on if my bloods are clear or not.

She didnt dismiss my pains or my concerns either which is good.
In the past if had drs say my pains are due to my weight or my flat foot or this or that. She genuinly seemed interested in actually looking into it.

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Juno
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#47
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I'm moving house this week. It hurts.
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chelseadagg3r
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#48
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#48
(Original post by PandaWho)
So went to the drs today to discussmy pain and fatigue, and concerns about fibromyalgia (a nurse questioned if i had it when i went to minor injury with my shoulder once) and last time i went to a dr about she very bluntly said "we dont test for it" and pretty much kicked me out.
So i didnt know what to expect today, but the dr i saw was lovely asked questions and explained about fibro and that theres not a test that can be done to say for sure, but shes asked for my bloods to be checked and then go from there depending on if my bloods are clear or not.

She didnt dismiss my pains or my concerns either which is good.
In the past if had drs say my pains are due to my weight or my flat foot or this or that. She genuinly seemed interested in actually looking into it.

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That's great! When I initially brought fibro up I was told it was impossible for a child (I was 13 or 14) to have it. It's not, but I was told they would not even consider it until I was at least 18. Thankfully the GP I saw about it later on was a lot like the doctor you saw! Reckons I've had it for yeeeears. I always get so annoyed thinking about the number of years I could've been getting help for it but this doctor refusing to acknowledge it as a possibility meant I had to suffer even longer Hopefully things move nice and quickly for you :hugs:

(Original post by Juno)
I'm moving house this week. It hurts.
Ouch! Hope you feel a bit better soon
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PandaWho
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#49
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(Original post by chelseadagg3r)
That's great! When I initially brought fibro up I was told it was impossible for a child (I was 13 or 14) to have it. It's not, but I was told they would not even consider it until I was at least 18. Thankfully the GP I saw about it later on was a lot like the doctor you saw! Reckons I've had it for yeeeears. I always get so annoyed thinking about the number of years I could've been getting help for it but this doctor refusing to acknowledge it as a possibility meant I had to suffer even longer Hopefully things move nice and quickly for you :hugs:



Ouch! Hope you feel a bit better soon
Yeah i was really nervous about bringing it up because of the reaction i got last time, but she seemed nice about it and to actually understand it. I dunno if it was an age thing with the drs, or what but the last dr i spoke to about it was id say in her 60s. She was lovely but i think fibro is a reletively newly found illness she wasnt that knowledgable about it.
I dunno.
Got my blood tests booked in for 16th may and i go away on the 18th so wont be doing much till i get back, but hopefully something can come about from it

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Juno
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#50
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(Original post by chelseadagg3r)
That's great! When I initially brought fibro up I was told it was impossible for a child (I was 13 or 14) to have it. It's not, but I was told they would not even consider it until I was at least 18. yeeeears
I got that when I was being diagnosed with arthritis. I was doing my A Levels, and "people that age.don't get arthritis". Except sometimes they do!


Ouch! Hope you feel a bit better soon
I think I'm over the worst bit now, because everything that had to be done to move out is now done. It's just unpacking left, and at least that can be done when I feel like it.
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zoe0712
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#51
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Hi, I'm 16 and start my GCSEs in 6 weeks and looking for advice on anything that may make it easier to manage/cope with chronic back and knee pain during exams? (My school have already arranged for 'rest breaks' so I can get up to walk around and stretch during the exams)
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chelseadagg3r
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#52
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#52
(Original post by zoe0712)
Hi, I'm 16 and start my GCSEs in 6 weeks and looking for advice on anything that may make it easier to manage/cope with chronic back and knee pain during exams? (My school have already arranged for 'rest breaks' so I can get up to walk around and stretch during the exams)
I can't second the above advice enough. Keeping well hydrated will help keep your mind there. Make sure you don't overdo things in the days before, but make sure you keep doing enough so that you won't stiffen up or anything. Take a nice relaxing bath, shower, whatever you enjoy the night before and just treat yourself a bit. I know for me feeling a bit more mentally prepared to deal with the pain helps. If you find you're struggling, ask for a different chair or table, even room if you think it might help for other exams. I find if I'm struggling with the pain, cooling myself right down helps. Other people find the same with warming up. You might find asking to sit near a radiator or a fan helps. If they have someone to supervise you through rest breaks them I'm sure they could accommodate something of my suggestions. On the rest breaks though, don't be afraid to use them if you need them

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zoe0712
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#53
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(Original post by chelseadagg3r)
I can't second the above advice enough. Keeping well hydrated will help keep your mind there. Make sure you don't overdo things in the days before, but make sure you keep doing enough so that you won't stiffen up or anything. Take a nice relaxing bath, shower, whatever you enjoy the night before and just treat yourself a bit. I know for me feeling a bit more mentally prepared to deal with the pain helps. If you find you're struggling, ask for a different chair or table, even room if you think it might help for other exams. I find if I'm struggling with the pain, cooling myself right down helps. Other people find the same with warming up. You might find asking to sit near a radiator or a fan helps. If they have someone to supervise you through rest breaks them I'm sure they could accommodate something of my suggestions. On the rest breaks though, don't be afraid to use them if you need them

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Thank you both for the advice, I usually drink a lot of water so I'll make sure I keep doing that. I'm going to be sitting the exams in the hall with everyone else and that's what I wanted (might sound strange but I do!) and I can have an ice pack/ heat pad during the exams and breaks and I'm going to talk to my school this week about taking something in to put on my chair (don't think they'll give me a different chair). I can't thank you both enough for your replies and I see a specialist next week so will see if he has any other suggestions
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chelseadagg3r
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#54
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#54
(Original post by zoe0712)
Thank you both for the advice, I usually drink a lot of water so I'll make sure I keep doing that. I'm going to be sitting the exams in the hall with everyone else and that's what I wanted (might sound strange but I do!) and I can have an ice pack/ heat pad during the exams and breaks and I'm going to talk to my school this week about taking something in to put on my chair (don't think they'll give me a different chair). I can't thank you both enough for your replies and I see a specialist next week so will see if he has any other suggestions
No, I totally get that! If you feel more comfortable with it then it's the right thing to do. It's great that they're letting you have ice/heat packs as well. Good luck
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chelseadagg3r
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#55
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#55
(Original post by Juno)
I got that when I was being diagnosed with arthritis. I was doing my A Levels, and "people that age.don't get arthritis". Except sometimes they do!



I think I'm over the worst bit now, because everything that had to be done to move out is now done. It's just unpacking left, and at least that can be done when I feel like it.
Exactly! Annoying to say the least, but also quite worrying considering a diagnosis like that is so important as well.

I'm terrible for unpacking. I recently unpacked a bag I took away with me from August 2014 Hope you're settling in okay!
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PandaWho
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#56
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My bodies come up with a mew pain. I dunno wether to be excited because its new or concerned!
Its like right by my tail bone but i hadnt nocked it when the pain started and iv not nocked it recently

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chelseadagg3r
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#57
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Just wanted to let everyone know that it's CFS/ME and Fibromyalgia awareness day today! I know not everyone here suffers with either condition, but the fibro part especially is relevant to chronic pain and there's some discussion about chronic illness going on, so if anyone wants to get involved the main thread is here Hope everyone's doing okay! :hugs:
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username2769500
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#58
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I had to get a very large part of my skin removed when I was very young and it was from the muscliest part of the body. I now have a bit of a limp or a weird walk that my parents noticed and I'm self conscious about it. I have noticed that my left leg is considerably larger than my right in this area (the skin was removed from behind the right leg) and it is as if I have lost more than my skin, literally nothin will grow there and I have hip pain in that side. Did the doctor have to remove some of the inside of my leg because there's no loss of mass from the front, lower parts or the opposite side just in that part tucked underneath my behind? It's causing a lot of hip pain when I walk and running is out of the question I've pretty much gave up sport because of that and I'm partly too heavy that it makes my whole moving awkward
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Juno
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#59
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Woohoo! It's nearly summer!

I know this because my fingers on my right hand are now very swollen, and this happens every time the weather changes. Who needs Michael Fish?
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chelseadagg3r
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#60
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#60
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
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