jp619

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Insulin
Thanks Matt,

I'm still trying to work my way through this. The pain isn't bad normally, it's more annoying really - being kept awake by nerves tingling and my leg jumping. And then constant tingling in other placs probably serves as a reminder of what's going on that I'm struggling with mentally. It does occasionally get bad, I guess I have to work thisout over time. My mental health going into this wasn't in a great place, so antidepressants are probably a good idea. I think my doctor figured if they help with pain as well then there's a double benefit. If I'm being realistic, my challenges are probably more mental than physical, sso I'd be interested to hear how people deal with that side of things.

Longer-term, I'm interested in finding other solutions. I've been trying CBD oil and that seems to make a difference. But it's hard to tell as it comes and goes so quickly anyway. Any idea
 
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Matt2023

Guest
Hi JP,

I hear you about the mental health side of things, it is not easy.

Your probably right, your doctor thought might as well try them for both depression and pain relief, I have heard of them before being given as a pain reliefer for this condition.

The only thing that has worked for me personally to help with the pain is a vibration plate that vibrates your feet very quickly and is also good for blood circulations. They can be found on Amazon, well in the US but I am sure in the UK too. This is the machine I mentioned earlier.

Thanks.
 

dunco123

Newbie
Messages
1
Type of diabetes
Treatment type
Tablets (oral)
Thanks again for your informative answers.

During my research, I’ve found that statins may contribute to PN. I remember reading a post from someone who stopped using them when they got PN.

Has anyone else heard of this? I’ve been taking statins for a couple of years (although the doctor seemed quite flippant when he put me on them).
I had really bad tingling sensation in my left hand when I first started on the statin called Arvostatin. It's listed as a side effect, luckily went away. My non diabetic husband has nerve issues like you have described - due to slipped discs in his spine. His feet are numb, sciatica down from his buttock to his feet....
 

jp619

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Insulin
Hi again everyone. I was wondering, when you do get into pain, what's the best way to get relief? I'm not in too much pain yet, but concerned what will happen if it ever kicks in.

Matt2023 mentioned a vibrating plate. I have a hand massager that relives my tingling so I may get one of those. Is there anything else anyone uses to relieve pain?
 
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Mess unhonest people being broke
Thanks guys.

One more quick question. I'm feeling the pain right now. What do you guys use for relief? Are there any pain pills that work? I've tried some CBD oil today and that seemed to make a difference. Anyone else have any thoughts?
For neuropathy im on amytriptalin meds two ten mg tabs a night and slow release tramadol which dont make me drowsy so driving isnt an issue but i try not to use the tramadol unless its that bad ive had pheripiral neuropathy for three years now sadly its not the best ive also gone onto caffine free tea more water used for drinks than tea/coffee only have normal tea if at someones house and its offered which has helped massively also less sugar in the diet hard i know but its also helped i also take marine collagen tabs one a day that has helped also but i still wake with the neuropathic pain just not as bad as it was im aware it never goes as is nerve damage
 

helenannb

Member
Messages
5
Type of diabetes
Type 2
T2 diabetic and diagnosed years back with pernicious anaemia (B12 deficiency) despite a good diet. I get PN symptoms when I'm due for my B12 injection, then it resolves. This month the pharmacy dispensed the wrong medicine - Ferrograd C instead of Ferrograd Folic. I started to get neuropathy symptoms.
It might be worth testing for any vitamin deficiencies.
 
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Oldvatr

Expert
Messages
8,453
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Two possibilities to reaearch. Cervical spondylosis, and possible vitmin B deficiency. The first is a mechanical problem in the neck /spine area, which can benefit from physio or chiropractor, and the second is a known cause of nerve problems. We absorb less of the B vitamins as we grow old. The first suggestion would explain posture related symptoms and the general overall spread of the symptoms. The final idea I have is possible circulation problems from furred up veins. a vasodilator med may help relieve this.
 
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Messages
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Hi everyone,

Can you help me please with some advice please? I'm a T1 diabetic (39 years) who has been diagnosed with peripheral neuropathy today ... it may be, but I have a small doubt.

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve as it seemed to get worse when I tweaked my back). The doctor ran blood tests that all came back OK, and booked me in with a physio.

Since then the back pain has gone, but the foot tingling has remained. It's been like it now for about 2 and a half weeks. It's not been painful, just a tingling. At night it's worse, still not painful but feels like my whole leg is twitching in-time with my foot and wakes me up a few times. Whilst it was just one foot, I was hopeful that it was back-related. Then, a few days ago, I have developed some pain and tingling in the other foot, which has set my alarm bells ringing.

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough. I mentioned a few things such as piriformis to the physio, but he told me that was fairly rare so not likely. He suggested I talked to my doctor about peripheral neuropathy as I'm diabetic, which I did today.

My doctor took the same stance - I have tingling, I am diabetic, therefore it's peripheral neuropathy. He said he couldn't think of anything it cold be, but conceeded that some other symptoms I have are "weird".

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing liek that has been offered to me.

Any help is greatly appreciated. I'm quite worried at the moment. Thanks in advance.
I have PN and I am quite surprised nobody has mentioned Gabapentin, I take 300mg 3 times a day which was prescribed to help with the pain and it does help but certainly doesn't completely stop the pain neither does it stop the leg twitching. I have consistently cold feet and not just cold but freezing even when wearing comfortable warm socks. Also hands get freezing cold very easily. It seems everyone feels as long as the pulses are good in your feet then everything is ok but I persisted about the pain so was then prescribed the Gabapentin. Remember with Type 1 you ARE far more likely to suffer with other problems like I have low bone density and have had TWO frozen shoulders for nearly four years now which is common to have one for diabetics but rare to have two at the same time. I find it is harder to get diagnosed when you are diabetic as they do like to use it as an easy diagnosis unfortunately.
 
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Badger09

Newbie
Messages
3
What's causing your symptoms is a puzzle, your GP will be working down a check list of the most likely suspects and checking them off received test results, If you stop seeing him (give up) he will stop looking for solutions, so persist.

This location gives a good overview of what the likely candidates are and what you and your doctor can do to narrow the field and prevent further damage search for cleveland clinic peripheral-neuropathy (sorry not allowed to post an actual site address).

If it truly is diabetic related peripheral neuropathy than the most urgent thing you can do is improve your diabetic control, the better you get it, the less damage will occur. (One doctor described it to me as sugar in the blood acting like acid, eating the nerve covering, once gone /damaged it doesn't repair) If it is this type of damage then pain killers don't really work to mask the pain, so improve your diabetic control. Sorry to be a bit scary but it is SCARY.

Taking meds on time everyday is important, do regular blood tests to check your sugar levels. Cut out all simple carbs, anything made with white flour (cakes, bread, pastry, pasta),avoid potatoes, white rice. Eat lots of vegetables, use Celeriac or butternut squash to replace potatoes, eat smaller quantities of brown rice and wholemeal pasta, good portions of lean meat and fish will help make meals still interesting. Get to like porridge/oatmeal for breakfast, (a little grated fresh coconut makes this into something you will probably relish.

Try to eat your breakfast late (when you are hungry, not just because its whatever o'clock) say 10 or 11 or even later and your next meal between 16.00 and 18.00. You will find that you are always comfortable never really hungry (complex carbs keep you full longer and provide a trickle release of energy). Your diabetic control will massively improve you will lose weight and you now will permanently not need a lunch meal (and save those 1,000 calories).
Try and fit in regular exercise even if its only 15 minutes of Thai Chi off of YouTube each day

Best of Luck
 
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arkle

Member
Messages
14
Okay "meds" etc.

Back in the early 80's, I first became aware, that I had what I thought was restless leg syndrome, And as this was pre-internet time, some research found that evening primrose oil was helpful with this (& still is today) as it "calms the nerve endings". This worked pretty well until the early naughties, maybe 02. When I approached my g.p. "Oh, I don't know what that is, I'll have to look it up". She didn't & went on a 2 week holiday.

My bed, just happens to be adjacent to a wall & I usually sleep on my side, facing it. Having previously told g.p. that I was losing sleep, with the ongoing & increasing number/pain from these shocks, she still didn't bother.

A few days into this "holiday", I was forced to go & see her locum, as I had rugby kicked the wall at 03.00 & was woken with severe pain. By the time I got up, my foot had swollen, so much I could barely get my shoe on. I went to see him & all he was interested in was reading the newspaper. His attitude, was frankly beyond belief, like " I'm only here to earn £300 a day, stop wasting my time", After some reluctance, he gave me some in-flams, a 7 day supply. I returned a week later & got exactly the same from him. I returned to see my g.p. the following Mon. who was not exactly overjoyed, that the locum hadn't sent me for an x-ray, so she did. This was (again) the following Monday. Whilst at work, the following Weds, I rang her up, complaining of excruciating pain, left my number, so she could call me back. The results weren't due back for a week, so she had to jump the queue. About an hour later, she called back. "You've got a broken foot" "I've booked you into, (another major hospital)N & basically "get there A.S.A.P." So I closed the business down, after calling my boss, went home, threw a few things in a case & got a mate to take me down there. I got dropped off & eventually, after walking round the huge site, into 5 different depts. got booked in through a&e. I then had a 20 minute walk, to get to the ward. Another 5 hour wait, to get a bed & was asked why I was there, as my g.p. had NOT either booked me in (as she said) not transferred the x-rays. So that meant a poor student nurse, had to push all 18 stone of me back down to x-ray. Upon our (Uphill) return, the new sister, said "you have a broken foot", Yes, that what I told your colleague before she went off shift. About 10-ish that evng, a consultant came in & arranged that my foot should be in plaster etc. He also mentioned he "didn't like the look of that & it may have to be amputated, as the re-calc, had gone to far (time-wise) for any degree of success". So we agreed, to at least go through the motions etc. I left after 3 days, in plaster & on a different antibiotic.

2 weeks later, & back at work, as had changed my car to an auto. I took a call from the consultant, who want to see me, as a matter of urgency. Another 2 days passed & we met again, in another hospital, late in the afternoon. This was about the time when mobile phones, started to become popular. So as soon as I got out from his office, I rang my boss & said had to give up work, immediately, like NOW. Anyway, a few months passed & the plaster remained, but the foot got worse, so as one of the central metatarsals had started to force its way through my sole. The cons. who is also one of the foot surgeons, said to "come in next tues & I'll operate on Weds, to remove that bone". during the op, they were unable to close my foot, as the re-calc, was "so dramatic" They had to continue with plaster, at least for the time being, these 3 days for the op-, magically turned into 6 + weeks, b.t.w. They were still unable to close it, some 2 months later, this time with one of the worlds leading foot surgeons, who happened to be my consultant's boss.

Several months later, things had gone downhill & the only option was a b/k amp. The morning after, amongst all the other stuff that was going on, morphine infusions etc, they put me on gabapentin. This was intro'd gradually over a few wks, to almost the (then) max dose. I was in, for about 11 wks. this time. Had to live downstairs, on my return, as no stair lift etc & the local council had to alter my rear path to improve access etc, as I would need to return for physio, 3 x a week, for several months, via wheelchair in ambulance. Your stump, swells up & down, pre-op so during the first year, I had 5 different legs made up.

That was back in 03/4, swelling, has settled down after 1st 12 months, so I'm still using one of the original sockets, which was made from a plaster cast of my stump, albeit wrapped in cling film, at the time. They've tried, scanning both my stump & the socket, several times, but just cannot get it right, b.t.w.

Also, during these early years, my p.n. was very frequent & would come on with no warning whatsoever. It made no difference what my sugar levels were, either at the time or in the days/weeks prior. The internet had started to become available by then & I found several "interesting" cases, as the pain was off the scale, for me. A retired g.p. called it "screaming agony", yes, been there etc. These attacks, could last 20 mins/2 hours/a few days or even several weeks, non-stop.

I rarely get them these days & my gab, dosage has increased, along with newer guidelines from 2300 to 3300. I was also prescribed di-hydracodiene tabs, as tramadol, did nothing for me. When things get beyond "noticeable" now, the gab, is maxed along with the di-h.

Quite a few years ago, I was aware that, magnets could be used to "control" cramp, as the magnetic waves, would interrupt the micro-signals going between the area, where the brain still thinks the nerves are etc. So I tried it with the p.n & phantom pains, as well as taking, until very recently, quinine bi-sulphate for cramp. My g.p. advised me to stop the quin, as it has caused irregular heart rhythms, so I now have it "in reserve" just in case ever needed, for short periods...
Anyway, back to magnets, the type I use, came from ebay & are a circular ceramic type, inside a plated steel caseing, they are called "tool box magnets" & are reasonably strong. Never, ever buy the neodymium type for this purpose, as they attract themselves to each other and will shatter themselves, leaving razor sharp edges. Just apply at least 2 with some micropore or similar, directly onto or slightly above the area for best effect.

Sorry for extended read, b.t.w.
 
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hh1

Well-Known Member
Messages
1,358
Type of diabetes
Type 1
Treatment type
Insulin
@jp619 you might find this helpful: https://www.nhs.uk/conditions/peripheral-neuropathy/ It refers to not only neurologists as the specialists who deal with this condition, but also alternative causes. It's worth reading all the way through this as some of the alternative causes are mentioned later on. Good luck with getting a definitive diagnosis and some relief.
 

KennyA

Moderator
Staff Member
Moderator
Messages
3,863
Type of diabetes
Treatment type
Diet only
Hi everyone,

Can you help me please with some advice please? I'm a T1 diabetic (39 years) who has been diagnosed with peripheral neuropathy today ... it may be, but I have a small doubt.

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve as it seemed to get worse when I tweaked my back). The doctor ran blood tests that all came back OK, and booked me in with a physio.

Since then the back pain has gone, but the foot tingling has remained. It's been like it now for about 2 and a half weeks. It's not been painful, just a tingling. At night it's worse, still not painful but feels like my whole leg is twitching in-time with my foot and wakes me up a few times. Whilst it was just one foot, I was hopeful that it was back-related. Then, a few days ago, I have developed some pain and tingling in the other foot, which has set my alarm bells ringing.

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough. I mentioned a few things such as piriformis to the physio, but he told me that was fairly rare so not likely. He suggested I talked to my doctor about peripheral neuropathy as I'm diabetic, which I did today.

My doctor took the same stance - I have tingling, I am diabetic, therefore it's peripheral neuropathy. He said he couldn't think of anything it cold be, but conceeded that some other symptoms I have are "weird".

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I also have tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing liek that has been offered to me.

Any help is greatly appreciated. I'm quite worried at the moment. Thanks in advance.
It doesn't sound like my PN at all (I'm T2 in remission) . Mine was the "burning feet" variety, which has continued to fade the longer my BGs stay normal - now a sort of warm tingle at worst.

I have tingles/numbness/pain from physical injuries, and physio or osteopathy has usually been helpful. The two sets of tingles were/are totally different although similar sensations, can't think how to explain it. Currently the PN in my toes feels a bit like what happens when your feet have been cold and the circulation starts returning. The injury ones - feel different, more twingy?

It's not always the diabetes, so my advice is to get it checked out. I've found private physios to be streets ahead of what passes for physiotherapy on the NHS.
 
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arkle

Member
Messages
14
A few moments ago, on the ITV regional news, Bristol & West country, they showed a 13 Y.O. lad with C.R.P.S. Who had a fundraiser launched to send him to Texas to undergo a form of treatment, not (currently) on the NHS.

The similarities, between the symptoms, are virtually identical. He had been off school, for a year, stuck inside his bedroom, with agonizing pain 24/7, screaming non-stop at most times day & night...
 

jp619

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Insulin
Hi again. It's been a few days, so here's an update.

I've seen another doctor this week, who again prodded my feet a few times and told me it's probably diabetes related. He's going to send me for nerve conductivity tests, but it may be a month or more before the appointment comes through.

Do these tests confirm it's diabetes related. or just confirm peripheral neuropathy? I accept I have PN, but it seems different than what I read elsewhere (gone from totally healthy to pain, no sleep in 2 or 3 weeks, have good diabetic control, tingling all over body including back, face, etc). In the space of 4 weeks I also seem to be devloping a bit of a tremor, is that normal?

If it's PN caused by something else would these tests tell the difference?
 
Last edited:

meggerz

Member
Messages
9
Type of diabetes
Type 1
Treatment type
Insulin
Hi Matt,

Out of interest why do you say that about pain meds at an early stage?

My doctor has already put me on meds, an anti-depressant Duloxetine. Partly to help with my mental health, and partly because the same meds will help with pain.

I've gone from no pain 3 weeks ago to quite a significant and disruptive pain. I have a follow-up appointment with a different doctor on Wednesday. He was also really surprised that everything has happened so fast.
Has the duloxetine helped?
 

jp619

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Insulin
Hi Matt. It's hard to say at the moment. I've had afew days with less pain, but it comes and goes anyway, and seems to keep on changing (sometimes tingling, sometimes sensitive, sometimes fine, sometimes in other parts of my body, etc). I've only been on duloxetine for about 10 days so far, but fingers crossed. And I seem to be sleeping better.

My concern is that if this is caused by something else other than diabetes, then I'm missing the chance to stop it progressing. I've gone from fully-fit without any problems at all to where I am now in the space of 4 weeks. And all my doctors say is 'diabetic'. It just seems weird.
 
M

Matt2023

Guest
Hi Jp,

I also have my good nights and bad nights with PN.

That's the annoying bit about it to be quite honest, because you just don't know how bad it's gonna be that evening. As for me it's the evenings I have more trouble with, when I'm laying down in bed trying to sleep. During the day sitting or standing not an issue, well maybe an odd twinge now and then here and there but nothing compared to when in bed trying to get to sleep some nights, but not all nights thankfully.

I have to admit my NP did not come on as quick as yours has seemed to have done but I am sure your doctor is fully aware of the onset of this condition and the short time it took and if he felt it was too quick, with his experience I don't think he would also have come to the same conclusion as it being NP.

Stick with what your doctor's telling you if you find it helps then that can only be a positive thing, if after three or four months you do not feel there is any improvement then for sure go back and see your doctor further examination. No harm in that at all.

Thanks
 

jp619

Active Member
Messages
28
Type of diabetes
Type 1
Treatment type
Insulin
Hi Matt. Thanks.

I think I'm coming to terms with it all - I accept it's probably diabetic neuropathy. But there's also some other weird stuff going on so I'd like a second opinion, just in case there are other causes and I'm able to prevent it getting worse (for example, I read PN can be caused by an auto-immune disease that you can get if you are T1 diabetic, and this can be halted with steroids). At the moment it seems to be stabilising and maybe getting a bit better, which is good so fingers crossed that continues. I actually had a full night's sleep last night, whereas for the first few weeks I was getting about 3 hours sleep a night.

I really appreciate and respect the doctors here in the UK, they do a fantastic job. But our health system is crumbling after years of neglect, and so there's no capacity to be as investigative as they would have in the past. Doctors are forced to mainly treat things after they've gone wrong rather than have the resources to prevent them. It's not a great situatin so sometimes patients are having to take matters into their own hands and go private if they are able to afford it. It's a shocking govt. failure, but I'll spare everyone the political rant!
 
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M

Matt2023

Guest
Hi JP,

There is absolutely no reason whatsoever why you should not seek a second opinion, but there will come a time when, as you say yourself, have to accept what it is and deal with it the best you can at any given time.

I also noticed the more I have my sugars controlled throughout the day the less the NP causes me trouble at night.

My understanding of NP (And I could be wrong) is that due to having poor blood circulation in our extremities, our nerves overtime get damaged and then give false signals to our brain, pain signals, involuntary movement signals or your feet feel very cold when they are warm to the touch. Unfortunately once nerves have been damaged there is no way to repair them. Though I have read claims online that nerves can be repaired, but from what I have read scientifically it is yet still impossible to do.

But don't give up hope, look how far we've come in treating diabetes in such a short period of time.

As for the NHS, many a year ago I was a patient, and I can't praise the NHS enough. It is one thing I can honestly say that I miss in the UK, but I chose to leave it to follow my own ambitions elsewhere, knowing full well that I will lose the safety net of the NHS and all that comes with it, like everything is free and you get the very best in medical care in the world. On my travels around the world I have seen some extremely poor healthcare systems in place, and it is not uncommon at all when you are thinking about someone’s life you are weighing up the financial cost of keeping someone alive even though the technology is right there to be able do so, it can be very costly and it is at times more financially viable to just let that person pass away peacefully, even when they are young, it is a tough decision to make, something that does not have to be made in the UK thankfully. Anyway like you, I do not want start comparing healthcare systems from around the world, for everyone on here, there really is no point. :)

I wish you well JP and if you feel I can be of any further support with your NP or diabetes, then please do get in touch.

Thanks
 
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Brettskee

Well-Known Member
Messages
114
Hi Matt I have severe neuropathy in lots of places got so bad cannot move my toes .I had all the ecng tests literally electracute you with all kinds of needles that is the only way they can definitely diagnose you for peripheral neuropathy at the same time I have 2 lower discs bulges 1 in the middle and 1 in my neck which compresses on my spinal cord and does paralyses me from time to time near enough bed ridden with this can’t hardly walk with loss of balance due to no feeling in feet my blood sugars were in the high twenties all the time on 9 injections of insulin a day still blood sugars didn’t come down the specialist told that I’ve literally fried my nerve endings I get tingles in my head back all legs arms hand fingers and and very bad one up my penis .was on all of the drugs tried work for a week or so then you get used to them they end up putting you on max dose and .There is one thing that does help this condition though it’s called capsaicin cream 25ww it is very strong completely numbs the area of the horrible stabbing pain don’t think a doctor can prescribe it though would have to be a consultant I think . sorry don’t want to frighten you with how bad it can get I do put mine down to over 25 different operations on my body over the years had neuropathy for about 12 years but as got worse and worse hope the cream thing helps if you can get some if you get some word of warning don’t touch your nose eyes with this on your hands good luck