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Pain Concern
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No Pregabalin.

Hi just a quick blog to say that after a severe and painfull constipation I can no longer take any Pregabalin tablets no matter what my doctor says as its my body and I have enough pain without adding any more. My mental state was shot to well where ever it went to.

My medication now consists of CoCodamol 30x500 mg and my Tens Machine and my mind over pain already by being off Pregabalin I am lucky as I have has no with drawel symptions. I asked my doctor if there was any other medication apart from Pregabalin that I could take his reply was INCREASE YOUR DOSE UP TO 3X100 MG A DAY,I am in pain not stupid.

I hope that all of you have a more understanding doctor .

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It works for many and doesn't work for as many.

Pain clinic prescribe it when other meds have been exhausted - sort of last chance.

David like you became a zombie. Tried it 3 times over several years with the same effect. No pain but neither did he know who he was or where he lived.

He now has 75 mgs fentanyl patches topped up with co cod. Plus the other usual suspects.

This is no longer enough for pain relief but as he still wants to drive it is difficult to decide next move.

And yes we have a wonderful GP and pain Clinic team.

Pat x

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Pirate 185,

I agree absolutely. I was on Pregabalin also and had hallucinations all through the night in addition to the constipation. I have been prescribed everything and have just come off tapendatol because of the withdrawal symptoms. Back on co-codamaol and tens machine to try and lead a life that is coping with the back pain.

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Hi ron281i am glad to say that since I have now been off Pregabalin for a full week I have no regrets and I have no doubt that my choice to do so was the right one as I am doing well with my Cocodamol tablets . Hope this finds you on a good night.

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i too have hallucinations, i enjoy them, all the different colours and shapes, helps to pass the time or am i just wierd........take care

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It's just depressing stuffing self with pills all the time, coping with side effects. I don't know what's worse taking the pills in the first place or stopping because they don't work! Constipation is no joke! My Sympathy to you Pirate - i know how you feel! - my pain consultant just got bored of me coz he ran out of ideas and the GP is frankly useless. :(

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Boozybird I was going to comment but I am so tired .

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Boozybird

Agree with all you said. Often the side effects when you come off are worse than the pain. Especially the morphine based drugs. My consultant is also out of all ideas and just recommends another drug which lasts another couple of weeks ,is not working , and then the withdrawal symptoms again. He also wants me to give in to the pain and sit in a chair all day for the rest of my life. We must all try to remain positive. Ron281

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Hi Ron, yes, we must try to remain hopeful. Afterall, yesterday someone came out of the wood work with an idea to treat a few 'lucky' unlucky back pain sufferers with antibiotics as a potential cure! Only 6% of chronic painers but oh to be one of those! Who knows when or where the next idea will come as it surely must to help the rest! Here's to waiting and hoping...;)

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Hi pirate185 I am on pregabalin 200 mg twice a day,to be honest I don't know if it is helping me or not I am afraid to come of it incase it is helping,and also I missed 3 doses at a weekend forgot to pick up prescription before chemist closed at lunchtime ,by Monday I had to ask my husbandl to stay home from work because I was in an awful state ,felt so anxious and jittery,and really unwell. By the way I am a 67yr old with lumber stenosis and osteo arthritis both knees are bad,so I find it difficult to walk most days if I do go to the shops I just want to be home. I am going to make an appt with my GP again( new doc we moved to a new area) it is hard to get used to someone new who doesn't know you. She did send me to the Ortho man I feel he took one look at me decided too fat too old didn't even say he would see me again, sorry I seem to have rambled on . You just feel no one cares so get on with life as best you can.It has been a good life until the last few years.

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Hi priegi thats me home from my wee part time job and guess what both my legs are sore I have took my Cocodamol pills an now I am off to my bed ,the pills should kick in soon an the sooner the better . Hope you are having a good day :-D.

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Thank you for taking time to answer me. I hope you were able to get some sleep ,I have no problem sleeping due to 200 mg pregabalin and 2 Tramadol at night,it starts the as soon as I wake PAIN in back legs and feet. It will never get better, but I wish the doctors would listen to me instead of me speaking to the back of their head will the fight with the computer ,before you know it your 7 mins is up and you don't like keeping them late I hope your weekend will be good.

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I am on 60mg per day MST CONTINIUS( these starts at 10mg up to about 200mg) which seems to hold pain at bay most of the time, if it gets bad they have given me ORAMORPH which makes you don't care anymore but it works. take DOCUSATE for constipation.

Have acupuncture every week aswell this helps me sleep at night

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Bunndy hi since I stopped taking my Pregabalin my constipation has stopped altogether now.As for my legs yes they still hurt even now as I text, but I take my Cocodamol tablets . Where would we all be without our pills ?

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I guess you were on it for neuropathic pain as I was, it made me feel awful and did zippo for me, I ten tried Gabapentin as well but as I was trying to increase the dose to 6 per as orders by my GP my PC screen melted Matrix style one sunny afternoon which was seriously unnerving experience, ironically I'd also had two very near misses in the car around this time and I had suspected it might be the drug that was effecting my vision, as it was I kept on seeing dark shapes in my peripheral vision for some time but I also started to wonder if it was blanking out objects as well, All I know is it's not good to look down a road see that it's clear then pull out only to have a car screech past you in blue tyre smoke so I gave up on it in one hit and had no problems with doing so, but doing so again left me wide open to some seriously unpleasant full on neuropathic pain.

Now that said I finally found some decent relief in Cannabis, I'd been a user for a few years when I was in my 20's but had stopped for a long time and only found out about it's usefulness for neuropathic pain control, I know I'll get a load of abuse and probably banned from here for saying so but it has been such a good neuropathic pain control I don't care what the legal status is here right now the pain is so strong I have little option anyway.

My experience with it is it doesn't stop all the pain coming through but it caps it so it doesn't get seriously out of control like it use to, the flares were so bad I'd be physically sick but since I'ver been using BCD rich Cannabis I can at least function again, it's been 2 years now and I've not been as bad since thank God.

Now I understand like all drugs it's not going to be helpful to everyone were not all built the same so there are risks with it but from a personal perspective it's be a life saviour to me.

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mr Fibble yes you were right Neuropathic Pain is my problem and I find that it takes all of my mental ability to keep me sain as the pain in my legs is constant I use mnd over pain I however have not yet perfected this approach but I am trying hard that and my Cocodamol pills. At least you have a way to help you with your own pain and at the end of the day thats what counts.

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Apparently magic mushrooms are good for lifting mood too!

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Boozybird I think I better try some of those :-/

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Hey Pirate

I've gone the other route and knocked the co-codamol on the head. I was sent to hospital because I was having really bad pain and they diagonosed that it was possilby constipation due to long term co-codamol use (they did not advise me to stop taking them but advised to ask for laxative on prescription), I've got so fed up with popping pills. I still have the occasional co-coadamol but I have to be in such a state that is the only option. I am still taking my pregablin 150mg because they have been helping me sleep and it was the lack of sleep I wasn't coping with, however sleeping is becoming a problem again for a variety of reasons including pain in the night. I wouldn't advise anyone to stop medication without talking to your doctor - however I have given up on being treated as I seem to be getting no better and am fed up with taking holiday or getting up at the crack of dawn for medical appointments. I have physio tommorrow and am thinking of removing myself from this list, I've already canclled my oh hand therapy as I'm getting conflicting advice from all the hp's.Am thinking of trying accupuncture I did get some relief a few years ago but stopped as I was going to have to pay for it, this time no choice. Good luck with whatever route you take. :)

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Snappy Hi yes the Route to take thats the big qustion ? And as for luck well I think that w am going to need a container load that and my Cocodamol tablets, my sense of humour is one thing that keeps me going. Hope that you also get a result .

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can u use laxatives prescribed by your gp, im on 100mg morphine tabs as well as lots of gabapentin, works fine , I wont be in pain for anyone x

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Lollywilli hi as I am now off the Pregabalin I am glad to say that now I have no constipation.

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Hi Pirate,

I am on pregabalin and have been for many years, my body will only tolerate 300mg a day after that things I would rather not talk about happen,but along with this I take senakot in the evening. I can not say whether constipation is caused by the pregablin or not as I also am on a high dose of morphine and this is very prone to cause constipation however with out it I would not be able to move or function. I think that whatever is causing your pain if it is neurological pregabalin will be of benifit, if pain is other then your right it is probably not for you. If you speak to anyone who like myself have been suffering for over twenty years we have all tried many combinations of drugs and many cause the effects mentioned it really your pain meds that need looking at as co-codamol is crap what you need or sounds like you need is a complete rethink by a compedent Pain consultant ( not always easy ) but if you have no joy with the one you have your GP now has the ability to search for a compedent one depending on you condition. I know it's not easy I am still looking for a person that has some idea of what it's like living every day without hope of improvement , Just to treat me and forget about what others think, if I need more I should be allowed more unless they now what living with it is like these doctors are just guessing " pissing in the wind " Good luck

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Dogbreeder hi an thanks for you imput I was on Pregabalin for a year but only the higher dose over the past couple of month. As for now I will stici to my Cocodamol tablets.

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Hi Pirate

I couldn't do pregabalin either. Gabapentin was the next one to try which is similar. It doesn't matter what pills I take, they all seem to mess with my digestive system, and turn me a bit funny.I don't take anything now other than the odd co-dydramol and ibuprofen, and heat helps.

The best advice I had was from a pharmacist in the pain clinic who told me there was no point taking any medication if the side-effects out-weighed the benefits. It's a shame this advice wasn't passed on to the doctors prescribing the meds in the first place. There does seem to be a thing about "take this medicine, it will make you better", and limited knowledge on the part of some (not all) doctors about other options for pain management when it doesn't help. I have been told to come off and then increase the dose for gabapentin by the same doctor - no wonder we get confused!

Can you try another GP? At the end of the day, it's your body and up to you what you put in it. Difficult when the only crutch being offered to you is medication that doesn't agree with you, but I got sick of feeling ill and would rather have the pain.

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I used to suffer with constipation so I was prescribed Is

MOVICCAL PIowder to get me going which cured the problem. Mind I do have a very good. Doctor"

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Colboy at least you got a result and thats what counts .

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I have Movicol and Docusate along with my oxycodone and low-dose gabapentin, which helps the constipation.

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Ever wondered how laxatives work!

Movicol, Dulcolax and other wonderous 'laxatives' contain something called ethylene glycol which is used in automotive antifreeze and brake fluid. According to American sources, it is associated with memory loss, dementia, and Alzheimer’s disease and adverse events which have been reported are serious kidney, urinary, bowel, blood, skin, and neuropsychiatric symptoms. :( :(

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Ethylene Glycol is also injected in to the spine with epidural injections which inclued steriod injections this is the major cause of spinal diseases such as adhesive arachnoiditis which is when a injection goes through the Dura sac of the spinal cord, the the injection is pushed in and causes mass nerve clumping, this is irreversable and patients then spend many years searching for answers as to why THESE INJECTIONS ARE NOT LISENCED FOR INTRASPINAL USE so the chances of getting answers are not great, we are all then put down as back pain suffers However because this does so much damage it distroys evey nerve you have in your body so you end up with Pain everywhere, every day forever with no hope of a cure because its still hidden as these people responsible are still carrying out thousands of these injections every year without even warning people what could happen even with the most experienced of consultants so what out. Do not let a needle near your spine.

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Nightmare. :(

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....but what about people like me who cant manage pain any other way and need laxatives, my pain is 80 percent controlled which is 600mg gabapentin split in 2 to 3 doses 100mg zomorph baclofen paracetamol , without this I could not live as as well as fibro I have regional pain syndrome plantar fasciitis shin splints arthritis, so i'm alive atm and able to do some voluntary work, guess I have to take the risk that the anti freeze won't get me first.

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I use something called 'ageless hydro c' which is just vitamin c powder (1,175 mg per day) and a glycerine pess after breakfast which stimulates the gastro colic reflex which the drugs inhibit but which we need the brain to register in order to go to the loo. It's taken a long time to train the neural connections and I'm hoping it will eventually not require the glycerine!

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Any person interested in spinal injections see Dr Oz

The New Links:

Part-1) doctoroz.com/videos/oz-inve...

Part-2) doctoroz.com/videos/oz-inve...

See for yourselves

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I take 400mg of pregablin 75mg amitriptilyne plus 8 co-codamol tablets every day but my doctor advised against senacot for constipation as it has long term health problems so he prescribed laxido which takes a week or two to start working but after that regular as clock work as long as I take 2 sachets each day, I have had all the injections mentioned none of which worked for me I have also had a spinal cord stimulator fitted this did not work either, I have just done a trial on lidocaine infusion and have had the best weekend ive had in the last 3 years so just waiting to go back to pain clinic to try the tablets to see if the improvement continues so fingers crossed has anyone else had the lidocaine trial?

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Vivikin Hi thats good news that this Lidocaine infusion looks promising for you . I have not heard of this before but I will ask if I can get this when I next visit the Pain Clinic in July. And best of luck and I hope that you are lucky and that this Lidocaine does the trick for you .

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well after reading all these i am sure most of my problems are now related to the pregablian and when i see doc on friday i will be asking about stopping it. i not sure if the pains will all go away but if i can get rid of the swelling of ankles and legs that might help with the heavy leg feeling

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IF you are lucky enough that the pregabalin - or opioids, antidepressants or any other pain relief method works, I'd never recommend dropping them merely because of constipation, even if it reaches the state where you need treatment for faecal impaction (getting really 'bunged up')

Although stimulant laxatives, such as Dulcolax, senna etc. aren't advised for regular use as the bowel may beome dependent on them to work, or oily laxatives, which can affect nutrient absorption, there are some things which can be used, some without and some with a prescription, which are, for example, used by hospices etc. for people on permanent constipating medication:

- increase the fibre in your diet (preferably fruit and vegetables rather than bran, which can interfere with nutrient absorption)

- plenty of water

- Fybogel - available over the counter. It tastes reasonable if you don't let it stand around too long

- docusate sodium (in Dulcodos for occasional use, but available on its own as capsules)

- lactulose (Duphalac) - OTC or prescription - does taste foul.

-Movicol - taken in water. The dose can be very flexible, so unless you have heart problems etc., under medical advice it can even be used for impaction. The usual dose is one or two sachets daily. (Good with a little squash or similar).

- in desperation, one-off Dulcolax suppositories, or slightly more frequent glycerine suppositories!

When things are available on prescription, if you are either eligible for free prescriptions or have a pre-payment card it works out cheaper!

Do check with your GP if you have other medical conditions such as diabetes, lactose intolerance etc. which might affect what you can take.

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I have just been reading the book Bad Pharma by Ben Goldacre ISBN 978-0-00-735074-2.

on page 68 last paragraph it says:

"in the 5 trials on pregabalin and pain, lots of people dropped out during the study period."

He then goes on to say at the bottom of page 68

"We know, after all, that people dropping out are more likely to have done badly on the drug."

I have my interpretation. To get Ben Goldacre interpretation and an idea of whats been going on you need to read the book.

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Hi and thanks for that john.

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