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Lidocaine.

Having a bad day today. Didn't get up till 2 15pm can't remember exact time we went to bed. What I'm wanting to ask is i wear lidocaine patches for 12hrs on a night. I take a number of other medication. But now my left I knee is swelling like my other knee does. Do u think i can wear 2 lidocaine patches at the same time 1 on each knee. At present i take morphine tablets, pregabaline tablets ammatriptaline ,dulocatine tablets also morphine patches also lidocaine patches. What doo you think?

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You can wear up to 3 max...no more.

Best to speak with your GP

x

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Hi I’m sorry to hear your knee is swollen. May I ask are you in the UK? I’m currently trying to get my dr to perscribe me these as I’ve heard a lot of Brits saying how effective they are, a few of them have said they can wear 3 at a time in varied places on the body. I’ve ordered some solonopas lidocaine 4% just to see how good they really are as here Drs say they’re too expensive.

Any advice you could give me would be great. Hope your feeling better soon

Jk

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Your GP probably won’t prescribe you the lidocaine patches pain doctors normally have to do it as doctors don’t like doing it.

Yes you can wear 3 at a time as long as it’s only for 12 hours and you have a 12 hours break in between.

I found them ineffective but I know a few other people who swear by them so As with all painkillers it just depends on your body

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Hi bexamy

Thanks for your reply. . It was my gp that prescribed me with patches. I was also under the pain management course arranged by my consultant, but I found it was telling me things I already know and do. To be fair I found it a waste of time.

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You must have a brilliant doctor then lol my doctor won’t do anything without my doctor Pain doctors ok, he thinks tramadol cocodamol and slow releasing my morphine is ok for someone who can’t walk and is bed bound lol.

I’m sorry you didn’t have a great experience with pain management, are you sure it wasn’t just the person you saw or the clinic you went to? As most doctors do not like dealing with long term painkiller prescriptions for chronic illness without having some sort of pain management program in place unless you already have one.

But as with the lidocaine patches you can 100% wear 3 at a time if you wish to cover the area needed it does say this in the leaflet you receive with it. Hopefully wearing them n both knees gives you more relief :)

X

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Hi bexamy.. The doctors/ nurses and physiotherapist were all really nice. I felt the course was just telling us to do what i already do, for instance like if having a bad day do your daily tasks a little at a time try not to do everything on a good day as doing to much on a good day will only exhaust you. Do gently exercises you can do gentle exercises whilst sat. I did the full 12 week course but Just felt it was all common sense. 🙁

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Oh right I’ve never have anything like that it’s always been about managing my pain with what painkillers there are and trying to get to the cause of the pain but if you’ve already found your right painkiller management you wouldn’t need all that lol.

I’m glad you have a good doctor who helps you through all this, but have they discussed your long term plan as all this tablets you are taking is an awful lot x

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Yeah my gp is really good. It's taken is many years to get where I am now. I've tried so many pills and potions over the years you won't believe.

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Hi jk2833

Thanks for the reply. Yes I'm in the UK. I've been using these patches for a while now . I've herd they are supposed to be expensive. I do feel they help me . Now i know i can wear more than 1 at a time i certainly will be putting an extra one on tonight .

Debbs.

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I have been using these for a few years. My gp did refuse to give me them after a while as he said they were only supposed to prescribe them for shingle Pain but the pain clinic wrote to him and re-prescribed them. I only use them if I’m really sore but I cut them depending on where I’m using them. As mentioned above, you can use several patches at the same time but I’m never using the equivalent of 3 complete patches. I also take Amlopidine, co-codamol, Duloxetine, Baclofen, Arcoxia and Fentanyl patches. The lidocaine definitely eases the pain for me.

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Hi. Yes i definitely feel it eases my pain. Like you i take duloxetine , pregabaline sevredol ammatriptaline morphine tablets and morphine patches as well as lidocaine patches.

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That’s a lot of strong medication and will likely be effecting your sleep. I’m also guessing with that volume of pain relief you are are fairly inactive. My advice, even although you’ll think I’m being mad, is to work with your HCPs to try to reduce the medication your on to improve your quality of life. It might be worthwhile asking your GP/HCP about a referral to a Pain Management service/programme

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Hi iainweir

Yes your right I am taking alot of strong painkillers and opiods but all prescribed by my gp. Its This high due to the amount of pain I'm in. Pain 24/7 is not good. It seems to be getting worse with different parts of my body aching constantly. I've been seen and attended a 12 week pain management course a few years ago. Like I said to bexamy it didn't do anything for me, it was just telling me things I already do on a daily basis. I flound it boring we were there for 3 hours each time😞.

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I’d suggest trying a Pain Management Course again. Not sure where about in the country you are. I help run pain management courses near me, and talk with HCPs to help them get a better understanding of chronic pain. I’ve a feeling that you maybe weren’t open enough or in the right place to get the most out of the course, maybe your group wasn’t really interactive or maybe the staff taking it weren’t great/right for you. From what your saying I’d give anything a try again to see if it helps. High Pain meds affect your body and mind in bad ways. Maybe even a medication review by a pain clinic or your pharmacist would help - there might be different options to try your gp isn’t aware of.

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Hi Iainweir.

Yeah I've gradually had my meds increased to try and ease my pain from fibromyalgia. I know it won't get rid of the pain. But when your body is in so much pain I'm thankful that i have my meds.

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I know what you are feeling. I am also a chronic pain sufferer. It wasn’t easy but I’m managing to get control of my life again and own the pain. It’s taking a lot of effort and time to keep my mind fully open and to try new things which don’t make a difference straight away. I’m glad I stuck at it though as my life is so much better now mentally and physically

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May i ask if u eere prescribed lyrica or gabapentin for fibromyalgia? I was and its quite strong,,,had a terrible time coming off this med, it helps but side effects outway the benefit, plz plz be careful as these were made originally for epilepsy but is also prescribed for nerve issues for chronic pain, i recently learned that medical marijuana works for nerves like a charm, i have had chronic nerve pain and have suffeted for several years, i tried a puff, just one tiny one and in 30 seconds the pain was GONE!!! I dont like the high part, i did get the card so i will be going to a dispenserary soon, they have cannabis that has a compound that can be purchased where you get no high but pain relief, i hear its expensive though

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Hi .Yeah i take pregabaline/ lyria.i take 250mg 2 times a day i was taking gabapentine 300mg 3 times a day. I switched bk too pregabaline as felt it want doing anything for me. Yeah i know it's an epilsey drug. Thankfully I've not had any bad side effects whilst i was taking either of these drugs. Yeah I've heard that cannabis (not the part of it that gets you high). A friend borrowed me his Herbva pen and that does help me.

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Sorry that you are struggling Debbs73.

I’m on the 3 week Pain management programme at St Thomas’ at the moment and have had some detailed information about all the meds - equivalent levels of morphine in all the opioids with other names for example. You are on a really hefty dose of a lot of meds. Top side effect for amitriptiline ( after dry mouth of course!) is sleep disturbance / hallucinations and agitation.

I agree with Ianweir, do try to get some help to reduce the meds. It’s proven now that opioids don’t work for chronic pain and we all get so tolerant that we don’t really get any benefit.

Good luck

😊

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Hi sorry to jump on your reply. I live on the south coast but my doctor thinks I would benefit from having pain management at St Thomas. How are you finding it? Is it actually worth it?

I mean I would have to travel for hours and hours in a car that would cause me even more excruciating pain as I can’t sit down but my doctor thinks it could be worth it as they are meant to be really good, do you have longer appointments and things?

X

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Hiya. I personally found the course a waste of time as was just telling us what i to do if having a bad day don't force yourself yup don things pace yourself. The time to relax taught us breathing technique and mindfulness. Is there not a course closer to home as like you i can't sit still for any length of time. By the time you get to the hospital your going to be in agony.

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I have pain management where I live but it’s not a course like how you’ve discribed it or anything it’s just discussing my medications. He wanted me to go there to been seen by better pain doctors who can prescribe me better things than what I’m on now that was why but I have said no as it’s to far for me unless I went in hospital transport lying down.

I can’t actually sit at all or do any daily tasks or anything apart from go to the toilet and I’m on two crutches just to even do that lol

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Wow im sorry that your living with crazy pain too, i too cant sit for long either, i had to be flown on a medical flight from arizona to new york to seek better medical help, so far its all the same, flight cost 25,000 ! So im in the same place but far away from home, im in bed all day long, i hate this, i do walk once a day and i make sure its a good one,to keep hips strong, but cant do it w/o without pain meds, now i need a knee replacement, the nerve pain goes down both legs to my feet so its a double wammy, hard yo tell if its knee pain or nerve pain

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Nobody understands this pain, not even the docs,,,only we do living thru it everyday

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Oh I’m so sorry your having to go through that!! Ouch that is very expensive for a flight :(

Is the care your getting there any better? Being in bed all day sucks doesn’t it , I love this forum though it keeps me grounded and I love being able to talk to other people who having pain like me and actually understand as someone is isn’t suffering from chronic pain they just don’t seem to understand the worst I find is doctors considering they are in the “care profession” most don’t seem to care.

I hope you are getting better care where you are it can’t be nice being so far away from home and all your comforts. Do you have anyone there with you x

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Im originally from ny, when my friend from high school heard of my med issues he flew me from arizona to ny on the med flight, he married me so i could have better health ins, the ins i had in az was very limited, shortly after i arrived both knees blew! My world! I had right knee meniscus surgery 2 weeks ago and no pt needed, in 2 more months i will have a total knee replacement on the left which will def need pt, i have no clue how thats going to work , im going to have to really push, once that heals then i will seek ortho surgeon and/or pain pump,,,i dont like pain meds everyday but i wont suffer more than i already do

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My faith has sustained me everyday, i wake up and read the bible, i dont know how i would have made it the last 5 years without it, i was alone for the first 5 years of this experience, 4 knee surgeries and 2 low back surgeries which left me with the nerve damage, but now i put my hope and trust is in God

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Oh you poor thing :( what an amazing friend though!! He must be an amazing support for you, it’s so amazing to hear that their are people out there like that.

Ouch that’s a lot for you to deal with but you sound upbeat and tough for someone going through it.

No I’m the same I hate being on painkillers all day everyday but going without just isn’t even a slight opinion for me anymore and I have tried but it was hell. Be just bought some CBD liquid to try out, have you tried anything like that?

X

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I never heard of that , what is it??

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Easiest way to explain it is .... cannabis has like two parts to it the CBD which has medical uses such as helping with pain anxiety depression etc and the THC which is the part that gets you “high” and gives you the foggy feeling.

So CBD is the legal bit of it and they use it to make tablets creams and liquid to smoke in a vaping pen like an e-cigarette that people use to stop smoking .

I’m not very good at explaining it all lol type it into google and have a look. But so many people swear by it for pain relief it’s helped a lot of people around the world.

I used to smoke cannabis and it helped with my pain so much but I just don’t like actually smoking it and because I’ve heard so many good things about CBD I ordered some a few days ago to give it a try x

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Yes yes yes, about a mo th ago i took one small puff, all i did was light it, in 30 seconds i was pain free for the first time in too many years of suffering, its been so long, i had a hard time wrapping my head around that i was out of pain! It works, but like u i dont like the buzz that lingers, the pain relief lingered as well, i did apply and i fit the critera for a meducal marijuana card and just received it a few days ago, i have to go to the dispenserary, from what i understand the cbd that eliminates the high portion is very expensive but i will get some of each, i cant stand the feeling of the high, its ok but it lingers and sometimes it feels like a heaviness, lazy feeling, i like to be of sound mind

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Oh I love that feeling as it’s the only thing that helps me sleep lol I would only ever smoke it at night once I wanted to go to sleep but couldn’t during the day because I would be a zombie lol it’s the fact you have to use backi and things I just don’t like as I’m not actually a smoker.

Is the medical marijuana the same as normal then? But yeah if you don’t enjoy the feeling but still want the relief then definitely have a look at the CBD products x

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Thats a great idea, i didnt even think of smoking before bedtime, ive been holding off smoking cause i didnt want to feel weighed down, in the morning especially,,but i really dont go out at all, hopefully when i go to the dispensery it will make the difference so after i have the knee replacement and go thru physical therapy it will be really helpful, between the canabis and pain meds i will get thru it, i really would like to back to arizona some time soon, i have a home there and the weather is so good in the winter time, its about 70 to 75 during the day in the winter, in ny,,,omg im freezing my ass off!!! Havent been in ny for 25 yesrs, i forgot this part! Yikes! I need to go back and thaw out! Its been in the single digits, snow, ice, crap!

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Yeah when I’ve been out of my mind at night and having weeks with no sleep I’ve just given in and smoked some and slept for over 5-6 hours straight in such a deep sleep and it’s stopped my spasms and everything you wake up feeling refreshed as it doesn’t stay in your system that long and you just sleep it out if you know what I mean lol. I just want to try something different now to see if that helps and as I’ve heard so many good things about it it can’t hurt to try :) I will let you know in a few days once I receive it and give it a go.

You poor thing having it in your knees I thought my hip was bad enough but knees I can only imagine the pain you both feel :( x

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Can you let me know how you get on with it please. My neighbour uses it and she swears by it. Which ones did you buy?😊

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Of course I will. I bought the liquid you use in a vape pen so I can smoke it rather than take the oil. I bought one of the strongest strengths you can 600mg , once it comes in a few days I will try it out and let you know :) i bought it from a site called CBD mods and they use Royal Mail first class so it gets there quick and they have a few different flavours but there are a lot of websites with already t more products and different ways of using it so it’s all about personal taste I guess as some people don’t want to smoke it. I’ve heard great things about it so fingers crossed it gives me some relief and helps me rest during the day and actually get some sleep at night lol x

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You can just buy it online? Do i need a card from a state like i do?? Ooh plz tell me more! The dispensery isnt around the corner, sitting ling periods in the car isnt a good idea, after 45 minutes im toast

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Yeah you can just order it online and get it delievered to you :) no you don’t need a card or anything as it’s completely legal x

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Thats great, only about 20 of the 50 states in the united states have passed it legal for medical use, only 2 states is legal for recreational use, not being able to sit or walk for more than 15 minutes i wasnt able to take a flight from arizona to new york, its about 2500 miles and 7 hour flight,,,the only flights that have pods where u can fully lay down are the internatuinal flights,,i really would love to get back to my home in az again within the year at least,,i hope something medically helps soon,, what time is it where u live? Ever been to the US?

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America is a lot more advanced than us in that respect , it’s completely illegal here except for the CBD stuff which was legalised last year I believe. You must get home sick a lot :( wow that’s a long flight especially if you have to sit up the whole time , that’s interesting I didn’t know that I thought they had like a lie down option or something on all flights in America as some flights like yours are so long. I really hope you get better soon so you can go home, what do you have to active in terms of treatments to be able to go back? home comforts when your like this is a huge thing. I hate being in hospitals coz I love my bed and my thousand pillows so much lol but to be honest I don’t go anywhere without my pillows even hospital appointments lol people look at me like I’m crazy 😂

It’s ten o’clock at night here I’m just watching telly in bed about to take my night dose of morphine and attempt to sleep lol. No I’ve never been I’m scared of flying so I couldn’t do a long haul flight the most I’ve been on a plane is 4 hours and that was bad enough lol , always wanted to go though for the food (I’m obsessed with steaks and grills that I see advertised and cooked over there and Disney lol. Have you ever been to the UK?

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No ive never been there either, 1st,, in 2 months i get the knee replaced followed by 6 weeks of pt, then i will resume on a few more ortho surgeon opinions, i know i have the nerve damage but the neurologist said that the pain from the nerve damage at the left and right sides of the s1 and the left l4 too,, should only effect pain from the knees and down and it does,but he said i should be able to sit and i cant,,,he told me to keep looking for a surgeon and not to quit, i have so much hardware from the 2 fusions that they cant get a good view because the hardware is in the way, 2 rods 2 cages and 10 screws from both fusions, other drs said i was fused and its as good as it gets, others prob dont want to go in unless they can see what theyre going in for and i get that, 2 others were going to do the revision surgery but backed out,,so im really confused, i will try a few more opinions,,,if it dont work out then i will try a pain pump which gives morphine directly to the area, right now im taking 22mg 3x day and 30mg 3x day alternating those doses, i will be lowering all doses over the next 2 months prior to knee replacement, its a lot but i was on more than double this current dose, ive been lowering slowly on my own, i felt like shit on the highest dose and im feeling much better now, and i know i can go even lower, my pain mgmt doc in az had me maxed out on 30mg 9x day and on oxycontin 2x day as well, i was disfunctional,,,ive been lowering 1/4 pill (7.5mg) weekly,,it feels like crap and i take breaks for a week or so to level out, but i have to keep going before surgery, it will work better, some docs just write the rx and dont give it a thought, not good doctoring, at least im not being made to lower im doing it on my own

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Oh wow that’s so much for you to deal with, can I ask what caused all of that? Well hang on in there and always get a second opinion. I hope this next op works well for you.

For someone going through so much you sound very positive and that’s amazing! Well done for lowering your pain meds yourself that’s great! Yeah taking that much just makes you a zombie doesn’t it and just not fully with it lol

X

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Ya im going to be fine, i was serving veterans free meals on veterans day, i volunteered to do it for 14 hours or as long as they came, about 7 hours in i took a break, there werent any chairs to sit down, i leaned against a wall and squatted all the way down, thete was a small round table next to me. I put my hand on the table for leverage to stand up, the table tipped over and i lost my balance and as i went to stand i tore both knees and tore my back, life changed at that moment, 6 knee surgeries and 2 back surgeries, crazy huh? I had my own business as a private caregiver for elderly and disabled helping them in their homes, such good work too, lost my bussiness, but i worked a lot and paid off my mortgage and wsd debt free, so i wasnt in terrible place financially when it happened, i thank God for that,,crazy but i was in really great shape when this happened, i wzlked about 2 to 4 miles a day and worked out in a gym 4 days a week too, i was working a lot,,,it probably wasnt too smart to do all that at 49 years old,,,

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Plz let know how the CBD works out

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Oh wow that’s crazy how your own life can change in blink of an eye, I’m so sorry that happened to you.

That’s good you have your own home to go back to and things though makes it a little less stressful for you and one less thing to worry about. Being that active at that age is a good thing I tell my mum all the time she needs to get out every now and then and have a walk lol. I was out everyday with my little one before this so he feels it more than me I think but it’s been so long now I’m not sure he knows any different .

Oh course, I will either do a post or give you a direct message about how I get on. I hope you get some rest today x

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Just received it in the post it’s on charge now so will try tonight and let you know x

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Hi bexamy, thinking of you tonight, hope your doing well

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Hiya thank you so much that means a lot, sorry I’ve been so absent I’ve been having a really bad few weeks , had another cyst on my overies it appears my other condition is coming back with a vengeance :( how are you doing xx

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Im hanging in there, im sorry your going thru so much, what is the plan the cyst? I know many women do get them, i too have one but it dosent seem to hurt

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I get really big ones all the time and normally they go within a month sometimes I have to have operations I’ve just got to wait and see with one unfortunately. I’m glad it doesn’t hurt you I wouldn’t wish this pain on anyone it’s not nice.

Glad your hanging on in there I guess it’s all any of us can do really lol xx

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Today is 30 days since my last dose of gabapentin, this has been the strangest thing ive gone thru, for 2 entire weeks my gums were in so much pain,,i went to the dentist and he said everything was fine, i woke up with it and went to sleep with it,,,3 days ago it just stopped and didnt return,,i couldnt stop my tongue from touching the gums, i had no control over it, so strange,,,now its as if it never happened,, try and explain this one!!

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That’s so random, some drugs do mess with your gums I’ve heard but not that one, crazy. Sounds really annoying though lol

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I have had some days of clarity which makes me believe that soon enuf it will all just finally stop, but in the mornings i still have double vision,,,im not going to see a eye dr,,,not this time!

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Hi Bethamy, i was thinking of you today, heres hoping this message finds you having a really good day, God bless you

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Thank you, thinking about you to. Hope your doing ok? I’m having a very bad time at the moment but hopefully it will get a little better soon x

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Im praying for all of us here, im having a terrible time too, i dont get any relief anymore,,im tired of being in bed, its exhausting!

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Tell me about it, not being able to sit in my own living room is awful! Just not a lot we can do our lives are in the hands of those who are trying to treat us. My son starts school soon and the fact I can’t even take him makes me feel awful. Are you any further to going home yet? X

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I cant imagine what your going through with a young child with you, my son is 26 and is in arizona, i miss seeing him, i dont see me getting home anytime soon,,,i need two knee surgeries and i dont see me being able to do physical therapy. I only walk to the barhroom and thats enough pain, what if they do the knee replacement and im unable to do the pt? Im going to be in big trouble

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I’ve got all my fingers and toes crossed for you if you do have the knee replacement. Do you walk with an aid? Xx

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I guess i can but if i walk stand or sit for 5 to 10 minutes i go into such horrific pain,, i know i will stay in hospital for 3 days after surgery, then they evaluate to see if u go home or directly to rehab,,they say people recover better at home and thats the goal,,,if i go home they will send for 2 weeks a nurse and a physical therspist 3x week,,,then i would have travel about 20 minutes each way for out patient pt for 6 weeks, i dont see it ,, i also can remain at the rehab for 2 weeks instead of going directly home,,see how it goes. It would be smarter for me to stay, there would be help, meals,medicine,,but of course i want to be in the comfort of my own bed, but my husband needs to work and i would be alone much of the day. What a mess huh?

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Yeah i feel the sane i hate the fact of being oon so might very strong pain killers and opioid but what can i do when i am in so much pain 24^7.😢

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What a good friend you have to do that for you. So I'm guessing your health insuranceis far cheaper in ny than it is in az. Here in UK our health service is free you can pay privately but i don't have thst22 kind of money. Lol.

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I was on the state insurance, being out of work i dudnt have private insurance , the state was good but limited to which docs i could see and at times was denied, its reslly not free as the rest of the working class taxpayers pretty much paid for those who couldnt, i was grateful, very grateful,,,the difference in the usa is we dont have to wait to see a dr or specialist, maybe a week or 2, there are people who r trying to vote in insurance for all but the majority in our country dont want it,,i wont not take the opiods and suffer, they work for me, at 55 years old i will do what works, some people put a stigma on people they take them and they clearly dont understand crippling nerve and back pain

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I used to work i was a career out in the community looking after people with ms , dementia and plenty of other illnesses. Before that i looked after people with learning difficulties. I've worked from the age of 16 until my illness made it bad for me to work.

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Me too, i was a caregiver for the elderly and disabled,,i loved it, i miss it so much

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Yeah I'd love to go bk too work as i loved doing what i did. I so miss it all. I had my own set off clients. The only thing i didn't like was the fact that the time each client had was sometimes not long enough and felt rushed. I miss the banter i had with each of them. But unfortunately due to my knees and back problem i could no longer do my job. I did have a couple of operations whilst working but due to the job like I'm sure you know yourself as u did the same work it is a killer on your knee and back. 😳😢.

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Agreed! Wow its comforting to chat with another woman who has so very much in common with me

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These sights have been a god send to me as ids nice to know there are other people like me. As i often feel alone. My husband and son are brill but unless you suffer 24/7 in chronic pain they can't fully understand. I appreciate that there are people out there far worse than Nye, but that doesn't make me feel any good. This time last year i was diagnosed with genetic haematomchrosis. Which means my body produces to much iron in my blood. So i have to have regular blood removed. But it also affects my bones what with that and my fibromyalgia it's very painful. Have you ever suffered body jerking with any off your medications?☺

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Yes i have, i was prescribed gabapentin for the nerve damage, i was supposed to take 300 mg 3x daily, i couldnt tolerate it, i felt so dizzy and kind of drunk, so i only took it at night because i slept so well from it and didnt wake up during the night with pain in both legs, i didnt realize at that time when i began taking it that i was experiencing was from the side effects, there were so many, my son had moved back home with his dog at the same time i started the gaba, i thought i was allergic to his dog, i had constant swollen glands, tongue swelling, hard to swallow,,,it wasnt the dog it was the gaba but i still didnt realize it until other things started too, the jerky involuntary body movements, anxiety, panic attacks, chest pain, left arm pain, jaw pain and so much more, i kept saying that i believed my nervous systom had been compromised, well it was and all from the gaba,,coming off it was a nightmare,,it took over 3 months as it has to be done very very slowly,, lowering opiods is a walk in the park compared to the gabapentin

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Hiya. Thankfully for that reply. I'm on 250mg off pregabaline 2 times a day. I was on gabapentine the same as you 300mg 3 ×daily. Now as far as i can remember i didn't have any problem with it. Also on a night during sleep I'm making some very weird noises. I've always talked in my sleep but nothing like this. My husband and son (he can here me on his room) say i I'm making screeching noises. I thought they were exaggerating so i recorded myself on my phone. All i can say is i sounded possessed. It's Been going on for a while now it's got that bad now we sleep in different rooms. Due to my noise. Now I'm wondering if it the pregabaline. I did mention it last week to the doctors not my normal oon as he's off. That doctor didn't seem interested. So asked for a second opinion. Which is today. Now from what you've said about your bad experience on gabapentine now that and pregabaline are off the sane family. I wonder if my body is reacting to it. I'm going to the Drs toddy so will mention all this and asked to be put back on gabapentine. It could all tie in. Thanks you may just be my saviour. Will keep you posted.

Debbs xx

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Dont be alarmed it 100 percent is the medication,,i have no doubt,,it works the gaba in the brain, many many people have had very strange medical experiences, so many have had to seek medical help for other symptoms other than what we originally started with and its all from this medication, im going to give u a website, i dont want u to be frightened by any means, i only mean for u to be educated as to other peoples experiences, always remember many do benefit from these meds but also keep in mind that unless doctors have this pain or an experience themselves being on this mef they wont connect it to the medication, even the US military has banned all of these medications, the manufacturer has been sued for for millions over this, only one state of the 50 in the US has it a controlled substance as it ought to be,,,google:" bluelight peoples stories of hell with gabapentin" ,u will also find the same goes with lyrica too,,u will find the stories are prettu much the same for both as they are related meds, i only want u to know other people symptoms and stories in the event u should expeience other symptoms so that u do not get overly frightened and just know that its the medication, these people are reaching out to one another for comfort

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Im sorry its "peoples stories of hell withdrawing from gabapentin" it will not only show the withdrawal stories which again are the same with lyrica,,,but symptom experiences while on it

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Now u can go to the doctor more educated and understand your mind and body, and know your going to be fine, God bless us and plz keep me informed

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Hiya. Yeah went to gp yesterday this one was far more interested in listening to me rather than the one last wk that's s totally different story he gave me a leaflet and said it could be something from my childhood causing it and gave me a leaflet and told me to see a councillor. Anyway told gp what's been going on explained you had same experience on gabapentine so long story short he's took me off pregabaline and put me bk on gabapentine as far as can remember never had a problem whilst on it . He's only put me on a low dose for now and build me bk up slowly. An fingers crossed all should be good. I'm so glad we talked as other wise I'd of driven myself mad, madder than i already am😰. I hardly ever read the side effects when given new meds. But from now on i certainly will be doing. These sites are so good to know that there are other people like me going through what we are. How are you bearing up?xx ☺

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Im so glad that i was used by the Lord to help guide you, i still have a purpose even from this bed! For me when the dose or med was changed, i felt fine, actually felt better, really good the first couple of days, but then it turned and it was ans still is one of the strangest and hardest things ive ever went thru,,and boy it got very strange, i didnt know how i would feel one minute to the next,its still different everyday, i dont know if this will happen if at all for you, we all react differently especially to this type of drug,,,but know if you happen to feel a bit odd/off or weird symptom begin,, u will know its just the medication and from changing it,,,lyrica is much stronger than gabapentin, if you do experince anything at all dont be frightened it will change, and i will be here to talk u through it,,,im so glad we connected,,,remember this type of med works best when the dose is taken at the same time and on time,,NEVER stop it at once, dont double up if u forget, but take it as soon as u realize,,,i have had memory issues with this stuff, i had to write down when i took it so i never messed up as i had twice, not good for me

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I didnt read the paperwork with wzrnings either, that wont hapoen again!

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I was so grateful to you for your opinion. I never thought the problems i was having could be down to that medication. I never read the info leaflet that comes with any medication either , but i to from now one will be doing so. I'm now 3 days in bring back on the gabapentine so far so good. I don't know if i mentioned to you that i was having problems when asleep. I've always talked in my sleep but mutt husband said i was not so much talking but making some very weird noises it's got so bad now we are sleeping in different rooms. I thought he was exaggerating slightly so i recorded myself on my phone and three noises i was making was like i was possessed. So i told the gp and again he thinks could be down to the med again. I bet the poor Dr was glad to get me out of the room. As i also mention to him about my left knee as it's very swollen. My right knee i have had loads of operations on but the won't replace it as they said I'd need it replacing in 10-15yrs time. I've had an arthroscopic procedure done many years ago but left one ain't good so he sent me for a x-ray so just waiting results. I often think ffs why me. Does anyone want to throw anything else at me. I must of been a right cow on aformer life.

How are you feeling today pain wise? Hope your not in too much pain. Xxx

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So glad we chatted too, i stopped the last 100 mg of gabapentin 2 weeks ago. Thought i was home free but NOOO! Yesterday and today i feel like im on a bad trip thats not stopping, cloudy, dizzy, feel really high, disoriented at times,,,,then a moment latr i feel just fine! i was originally on only 300 mg and only 1x at night, i lowered only 100mg the 1st time and slurred like i was having a stroke, lost my motor skills, memory and so much more, everyday was different, 23 days in i felt better and then i reduced another 100 mg and had much different symptoms than the 1st time, one day for about 30 seconds i had a very loud strong vibrating on left side of the brain, it it sounded and felt like aelectric air compressor, i was holding my head very scared, now that was wild but never happened again, ive read the last is the hardest, and that when u believe that ur feeling ok for a long period, then out of nowhere, cry for no reason, strange shit, double vision, ringing in my ears, crazy, my brain is trying to reboot! Pain is the same without gaba, i just slept really good on it, people say when they reduce/stop they dont sleep for days on end, so i took sleep aids to beat that effect, gotta have really good rest to deal with all of this and the pain, its the only time i dont feel anything is when i sleep, im so very glad that your doing well, glad its helping your pain, i read yesterday the lidocaine may cause exasperated pain sometimes, weakness too,,,i know when it does and i remove it, i too had 3 right knee meniscus surgeries and one left acl/meniscus,,,in a few weeks im getting the left knee replaced as the acl blew again,,,crazy right?

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I've been using these for about 6 years when I get those terrible zapping, burning pains across my back that is caused by fibromyalgia. They aren't a cure but certainly calm it down. On my box it says 1-3 patches. Have a look on the chemists label they put on with your name on and you should be able to see what your GP has prescribed. If there is nothing there I would just give them a ring to find out. Hope they work for your knee.x

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Hi roseine.

Yeah like yourself ive been on the patches now for some years. An it's weird as soon as I put the patch on I can feel cold an it feels like its working straight away.

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Yes it is that lovely cooling feeling which is the best bit.x

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yeah that's the best bit it's like you can feel it working straight away.

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Hi Debbs, wondering how your doing

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Hiya Michele. Nice to hear from you. I just seem to take things as best as i can. Everyday i wake up with a different part of my body hurting. Had to go get an x ray done on my left knee the other day as it's very swollen. Going bk too see my gp next week too find out the out come. I've also bought some c b d oil from Holland and Barrett as it's ment to be really good. So I'm going to try it tonight. It might not do anything for me. But for £9-49 I'll try anything. How are you feeling. You been doing much?xxx

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Sorry your hurting so badly, i know your pain too, im also having a bad bad day, pain is through the roof, pain meds arent helping and thats unusual, im supposed to have a total knee replacement in about 6 to 8 weeks, i dont think i can do the rehab because of the back abd nerve pain, back is so swollen, prob from not walking correctly ss well, i fell on ice about a week ago and landed on both knees in a prayer position, pain is hell, going to get med marij saturday, i have appt with pain dr thurs to talk about pain pump, i know ins is going to give a hard time, vrry expensive

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Hi Michele. Omg that must of hurt like hell falling oon both of your knees. I have problems with my knees and just the thought of you falling on your knees makes me wince with pain. I've asked why i can't have new knee there reply was im to young (44), my argument is surely it would benefit me doing it now rather than yrs down the line when i won't benefit from it. It's like I'm banging my head in a brick wall. Now my left knee is swelling it's always hurt a little bit not as bad as my right knee. I'm at Drs in 2 weeks i think i know what he's going to say it's all part of my fibromyalgia and probably my genetic haematomchrosis won't be helping either. So frustrating.😡. My quality of life is s##t. I'm sure you must feel the same. What is the marj drug you going to be getting? Rather interested too find out. I bought some of that c b d oil and tried it for first time last night. It taste rank😣. So if you don't mind me asking how much will it cost for u to get your knee replacement done. Hope your pain isn't as bad today. Sending gentle hugs. Xxx

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Hi Debbs, sorry i took so long replying, my left knee replacement cost 250 thats my co pay with insurance, i know your medical is covered in your country, i lit the med marij today, just lit it and it took me about one hour to wrap my mind around the fact that i was not in pain, ive been suffering soooo long with crippling disabling pain that mind said i was!! At my appt saturday i will buy the cbd without thc,,when i lit it this morning at 6:00am i just layed there like i big lump for 4 hours,,,i had been waiting to use it when i felt better from stopping the gabapentun,,,its been 30 days and i still have double vision, increased pain, headaches, disconnected and really off,,,i had a feeling if i used the marij feeling like this it would feely really bad at the same time,,,i was right i felt like crap, it def magnified the effects of the gaba wd,,but i was and remain out of pain! Im stunned, i was so afraid to so the knee surgery, not afraid of the surgery , but afraid i wouldnt be able to do physical therapy which is really important for a replacement,,i had reconstructive surgery on that knee in 2012, i wanted a replacement and dr said no im too young, i was 49! Really? And now i have to do it anyway,,he could have saved from going thru this now,,,i had 3 meniscus surgeries on my right knee,,i was very unhappy they wouldnt do a replacement on that by the 3rd one,,i asked what happens when theres no meniscus left to repair. He said then we do replacement! Wow

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I will let you know what happens and what i buy at the dispensery,,the dr wrote for 3 different kinds,,one with high thc low cbd, one with equal thc and cbd, and one with low thc and cbd,,he wanted me to start with the equal and will get that one, but i called the dr to give me the one with only cbd, i need that one while i still have the symptoms of gaba going on, since i took last gaba dose a month ago i only had about 3 or 4 days of clarity,,,,how are doing? Write me when your up to it

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Hi Michele. The medical marj you talk about, Is it just like a normal joint?. The c b d you are going to by oon Saturday is it the oil or is it a tablet. The c b d oil i bought tastes vile. If it is the oil i would advice you to use while u have a hot drink as the first time i used it i drank water after it and it made the taste even worse. So the next time i used it i had a cup of tea on stand by. Which makes sense as it gets rid of that oil quicker. Might not work for others but does me. I'm not sure if i should take it every day or just oon bad days as don't want my body to become immune to it. Sounds like u had as much fun as me with Drs saying to young for knee replacement it's madness ain't it. I've got my mri on Tuesday for my shoulder I've had to cancel it as they made it at stupid time so it's now 12 noon on Tuesday. I've had surgery on it a few years ago as i had a tear in my muscle they stitched it once but had stitched it to tight don had to undo it. But now getting more and more psin. Could just be my fibro but Dr wanted to double check. Have u seen the awful weather here. They are calling it the beast from the east it's snow and subzero temp coming from Siberia. Keep me posted on how ya doing. Sending gentle hugs. Xxx. 😃

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Hi Debbs, i went to the dispensary here in ny yesterday, the dr wrote my rx in a way where i could try each product, they arent as advanced here in new york than in arizona or other states in the us, where you can purchase smokable, oil, food, pens,,,i only could purchase the oil or pens,,i didnt expect that i was so disappointed, i did buy 2 diff oils, they were cheaper by 50 bucks and lasts longer than the pens, the pens cost 100,,the first is called harmony, it is equal amounts of thc and oil, the other is called awake, awake is a bit stronger thc and less cbd,,,i hated the feeling awake gave me, yikes! The other i will try tomorrow, the pain in my knees got so bad i can barely walk or stand,,after the drive and drive back, plus the time there was a lot for me,,sitting always hurts me, but i had to walk up and down a flight of steps and that did me in, calling ortho surgeon in the morning! Cant believe this, i just had right knee menicus repair 6 weeks ago and was supposed to see surgeom to schedule the left knee replacement,,,i hope they agree to do total knee on the right as well now ,its the 4th time it has torn,,enuf!! Please! How is my Debbs today??? Hope this message finds you well my new friend on the other side of earth!

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I didnt mean to write my debbs but meant to write my friend debbs! Plz dont think im crazy!

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You are very correct in saying the oil is very nasty. Its mild tasting like marijuana , but the squirting of the oil directly into the mouth is horrible, it does help with hot coffee or tea, thx for that info, very helpful

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Hi Michele. Don't worry my friend i don't think your crazy. 😂. Yah thought I'd give you and anyone else a heads up on having a hot drink at hand to get rid of the taste. Oon the bottle i got days leave it under your tongue for 2 mins, Bloody hell 2 mins is a damn long time when u have something rank in your mouth. 😝. I'm going to try and only take the oil on very bad days, as i think i have enough chemicals in my body with all the medications that i take,it seems it's very bad days now. I wake each morning with s different part of my body hurting. So i could end up taking it more often. I going for an mri scan tomorrow to see what's going on with my shoulder. But before that my son has got his car booked in for s service and his mates and girlfriend are at work so I've got to go with him to bring him back home then the him back to collect it. I'm dreading it. As i know what's going to happen in going to be in mega pain. These days i only do town driving which is about 7 miles each way now a day's as it's not worth the pain. I'm also due at the Drs next week too discuss my results from x-ray the other week. Only thing is it's not my usual gp as he's on sick leave I've got a very good rapour with my own gp. I'm just hoping this one is just as good. Going to ask and see if i can get medical marj on prescription. Will keep u updated. Well i need to move my arse of this couch as like yourself i can't sit for too long.

So take care my friend. Here's hoping your pain is not too bad today. Xxx

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I also have to stay close to home, isnt just terrible? Im still suffering from the trip on saturday to dispensery, its stunning,,i know and understand your pain all too well, hope all goes well for you too at the dr, keep me informed, always here to listen Debbs

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Hi Michele. How have u been the last couple of days? How's ya pain? Just thought I'd give u an update on how my mri went. It was eventful. Bearing in mind I've had a few mri scans in the past and have been fine. But yesterday however i wasn't. They put the shoulder brace on but then they put a strap over my arms so i couldn't move. I think that was what made me jittery. They gave me the button to hold incase i needed anything. They moved me into the machine. I could feel my breathing getting faster and my mouth dryer. I kept saying to myself only going to take 20 mins u will be fine but i felt like i couldn't swallow and breathing getting worse. Then they moved me further in the machine. That was it i had to press the button. It came over from the speaker are u ok Debbie i was like no i need to get out. They got me out. I was in less than 10 mins. The nurse said its fine don't worry just re bok it but goto your gp and get something ie diazepam to calm u down. I was shaking and everything i had to sk for a drink of water. Came home and re made apt. The person i spoke to said the unit i got it done at was a mobile unit. So they sending me to another hospital as it's a bigger and better mri machine and said I'd have a better experience. I said it couldn't be any worse. So a bloody nightmare. Sending gentle hugs your way.

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Oh Debbs im so sorry u had a hard time, ive done so many mri and ct scans and i always take xanax or i wouldnt get thru it either, i felt that once and i said never again without xanax, dosent seem like a big deal but u have been thru so very much already, dont knock yourself over if, shake it off my friend, you learned a valuable lesson, our nervous systems have been compromised , hugs oo xx

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Hi Michele. I forgot to say i did have some good news yesterday. My general blood tests i Have done for my haematomchrosis has come back at a fabulous 52. Which is brill as at my first ever one was in the 1500.... so thank God something this week is slightly better than it started. I have a love for tattoos ady present i have 9 an I'm booked Into get my 10 I the 20th. All of them mean something to me my husband son. My fur baby Bruno and this next one is for my beautiful Nan that left us at the beginning of the year. This one is going to be a cup and saucer as Nan always had her cup of tea in them. With a love heart either side. Speak soon. Xxx

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What a nice way to express love and never forget , thats great news for you, you deserve it xx

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Thats sounds really fun, a good lift for your spirits! You sound really good Debbs!

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Thankyou. 😃

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I would refer to GP as you don't want to overdose

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Hi, I'm allowed to use 3 a day, I cut them up smaller and wear them up to twelve hours and then I put them in a slightly different area next to where pain is, it seems to help heaps otherwise I feel numb if keep using in same place.

I'd speak to your doctor and tell them, it may need checking out or at least put in your medical records in case it gets worse, they can then monitor it..

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Yes defin wear lidocaine patches on both knees, i do and they help greatly, i even wear one on my back,, i cut the patch into 1/4s,,,u will get the same benefit from earing a whole patch,,,i use 3m tape so they dont fall off

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Hi Debbs 73. Get off all those painkilling patches and pills. Speak to your GP and get a referral to a Pain Clinic. The Walton Centre in Liverpool is the best in the country.

I have responded to several of the members on this subject. Look for some of my answers and see what you think. Right now all you are doing is masking the pain NOT treating it. Also it sounds like you are suffering with depression and nerves. We all suffer with that but do not wallow around in the state. Learn to relax, get some proper relaxation tapes or CDs. Look for a Tai-Chi class near you. I can almost guarantee you will benefit from it. I personally am on a constant flow of Hydro-Morphine via a drug pump under the skin. My pain has dropped from 10/10 to about 5/10. I still get pain but it is bearable. Some days I can’t move but I work around it. Try it and let me know.

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I wear 1/4 patch on each knee and a 1/4 on my lower back too,,,u can the same benefit as wearing a whole patch, i too have chronic pain everyday

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Everyone tolerates pain differently and our injuries are very different as well, do what works for you to give u the relief u need, living with chronic pain is no joke and it can and does effect our daily living and relationships

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I actually had my 6th knee surgery 2 weeks ago, this time i used the patches around the incision area and for the 1st time i didnt need pain medication, i found this on a ortho web site,,many surgeons are now allowing this because it works!!!

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Hi Debbs73, long time!! How are you?

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