Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

FM

May 22, 2014 1:38 PM

Why o why won't this agonising pain give me a moments rest bite, years of never ending pain, pain, pain, so tiring.

May 24, 2014 1:01 PM

I know! I feel like a broken record. It is indeed exhausting. I just keep putting one foot in front of the other and I manage to get where I need to go, do what I need to do. You can do it! We are all there with you, one way or another.

May 25, 2014 12:20 AM

Thank you.

I don't know if u know know about this, I receive this Thursday what they call Lignocaine Infusions which I go into hospital to receive through a drip. this gives me about 50% relief for around 3/4 weeks. worth asking your GP about. Lignocaine is what a Dentist uses to freeze ones mouth when having a tooth extracted.

May 25, 2014 7:35 PM

have you had one of these drips and if so did it help? if not will you give this forum some feedback if you do? I am not at that stage were I need to look at other types of pain relief, but would like to know about what is available and how well it works. I had a minor procedure done in hospital a couple of months ago and instead of general anaesthesia I was given a spinal block (this was because of concerns about my bac and neck if I had to be moved) anyway it was quickly administered took effect within 5/10 minuets and lasted about 7 hours. it was the best relief my back had had in a year and the afterwards my back was hardly sore for the next few days! so I bet that the infusions you are talking about bring at least some relief and respite from the relentless pain your having.

May 26, 2014 7:49 AM

Hi there, I receive my next infusion this coming Thursday 29th May, having received this treatment now for near two years it's made a difference to my pain, thoughts etc. The day after one feels a bit tired and not quite with it but day 2 I feel the difference solely approaching with a reduction in pain. I still feel the pulsations but without the high levels of pain and everything else that comes with FM. I have in the early years had flare ups while infused, but that was my own fault for feeling human/normal again and doing too much of what others would call normal everyday things like gardening etc. Having had discussions with others this treatmeant does not work for everyone, but for me it does for a little while, letting me smoke again. One word of caution, when the effects of the lignocaine wear off the pain is intense as one tends to forget for a few weeks what the pain is like. I hope this helps and please keep in touch as FM is a lonely thing like all types of pain.

yours

John

May 26, 2014 7:49 AM

Hi there, I receive my next infusion this coming Thursday 29th May, having received this treatment now for near two years it's made a difference to my pain, thoughts etc. The day after one feels a bit tired and not quite with it but day 2 I feel the difference solely approaching with a reduction in pain. I still feel the pulsations but without the high levels of pain and everything else that comes with FM. I have in the early years had flare ups while infused, but that was my own fault for feeling human/normal again and doing too much of what others would call normal everyday things like gardening etc. Having had discussions with others this treatmeant does not work for everyone, but for me it does for a little while, letting me smoke again. One word of caution, when the effects of the lignocaine wear off the pain is intense as one tends to forget for a few weeks what the pain is like. I hope this helps and please keep in touch as FM is a lonely thing like all types of pain.

yours

John

May 26, 2014 7:50 AM

(Smile Again), mistake in original reply

May 29, 2014 11:23 AM

Just received my Lidnocaine infusion in hospital, eight hours of feeling the pain slowly being
numbed, tomorrow I know I will have a smile on my face for the next 3/4 weeks. I receive this infusion every 7 weeks. Was every 4 weeks but others require the same as me so it's now a victim of its own success. Lidnocaine doesn't kill the pain but it does give relieve, not everyone gets the little rest bite I get from it. Anyone reading this who hasn't heard of this treatment please ask you GP about it. I live in the outskirts of Highland Scotland & travel to get my infusion into Tayside one of the very few who offer this treatment.

Hope this helps someone out there.

John

May 29, 2014 4:34 PM

Trevor, what are the side effects or down side of this treatment? It sounds somewhat promising.

May 29, 2014 7:36 PM

that surprises me that your in Scotland (uk) as I m in northwest England and I haven t heard of this form of treatment, let alone requesting it from my GP. From what I ve read its possible to request treatments when you are paying for treatment in the USA. I did have a discussion with my pain specialist about maybe having steroids injections in my lower back, but I am reluctant to have them because I had severe tendonitis in my Achilles' tendon and had steroid injections, they worked twice then didn t work at all so I ended up having tendon decompression surgery! I heard about a similar lignocaine injection into damaged facet joints in the spine which relieves pain for a while!
when you say infusions were exactly is that, into veins, muscles etc? into affected areas or into general circulation? how long does the treatment take in terms of time?

May 30, 2014 5:51 AM

Hi there, I receive two 50ml bags which take around 7/8 hours to infuse into the body, this treatment has been given to pain sufferers for over 10 years up here. Once my pain specialist thought my pain had now reached a damaging level I was put on the Lidnocaine infusion program. Specialist nurses are with one all day checking on ones progress. I'm so sorry down your end you don't get offered this type of pain control. For instance on Tuesday of this week I couldn't walk, couldn't do anything due to my pain, today I've cut my lawn with no problem. I can still feel the pain pulsating away in the background but the pain has been reduced for me around 75%. I know we are lucky up here in Scotland as Fibromyalgia taken very seriously by the Scottish Government. I suppose it depends what your NHS spend their money on, I am so upset when I read others suffering and I receive resbite for 3/4 weeks before the substance runs out. I receive my infusion every 7/8 weeks now as it's now became very popular, but at least I know it's there for me which helps with the stress etc. I do know it's not for everyone & when you say your receiving steroid injections which don't really do the job as I refused them at the start. I have a fantastic GP who goes out on a limb for me, so tell your pain specialist that you will cut a limb off or something similar, then they may look into Lidnocaine. Lidnocaine is a very cheap treatment and I'm astonished that down in England no one seems to have heard of this form of pain management. Thank you for your message and I hope I've helped you in some way.

Regards. John

May 30, 2014 1:59 PM

I tried epidural steroid injections for a while and the best it did for me was moderate pain reduction. However, it did allow me to return to work for a while as it reduced the pain by maybe 25% to 50% for 7 to 10 days after the injections and maybe 15 to 25% for the 10 to 15 day time frame. I could only have an injection every 21 days so the 15 to 21 day time frame I was right back to full on pain.

They always had problems getting the needle into my epidural sack because I don't have disks in the lumbar region anymore and there is so much scar tissue there it was like trying to stick a needle into tough gristle. The last time I went, it was so painful from them using me like a pin cushion that I would never go back. I had to go back the next day after that last one for them to inject Lidnocaine directly into my sciatic nerve as they irritated it so bad that I was couldn't stand the pain and none of the narcotics would even touch the pain. So I have had Lidnocaine direct injections into the nerve but not as an intravenous drip. I have read if you have high blood pressure or heart problems that they likely won't allow you to have the infusions. Unfortunately I do have high BP and had a heart attack at one point.

I would always suggest at least trying the epidural steroid injections, I had talked to some people at that pain clinic where I received the injections and it helped them a lot, it just wasn't that helpful for me.

May 30, 2014 8:23 PM

I had steroid injections in my Achilles' tendons a few years ago and the first two round of injections worked wonders and I got 6 months relief from pain, so I had just over a year of being free from pain, but after that they simply didn t work at all, so I ended up having surgery on both Achilles' tendons. after this experience I realise that they have limited usefulness for me and this is what puts me off having them in my spine!
I m not saying that in the northwest we don t have lignocaine infusions, cos l don t know if we do or don t, I just mean I haven t heard of them. and as you say, it depends on how our health authority spends its money and weather they would allow that sort of treatment. I do however know that they have cut the cost of medications because four of my medications have been changed to cheaper brands! Additionaly, I have under active thyroid and have a miriad of health issues associated with that, and found out that the artificial thyroxine is far cheaper than the organic one. research in America suggests that the majority of people do better with the organic stuff, so I spoke to my GP about it because the artificial stuf hasn t reversed most of my symptoms. first he tried to say, they don t prescribe it in the uk, so I took some I formation back to him about supplies in the uk and that I can be prescribed here! he told me that there was no research available to suggest that it was any better than the artificial one. plus the articial one cost about 60p as oposed to £25.0+ for the organic stuff. I came back with, I had nothing to lose as the artificial one was having little effect and that I was considering buying some in from abroad, I was told if I wanted it prescribed it would have to be a private consultation and I would have to pay the full cost of the organic stuff, game over, I can t afford that!
so you see, I have tried to be pro-active about treatment and was met with a load of excuses about why they can t give me it, cost being one of them. I would fully expect that if I suggested a different treatment they would dismiss it for a load of reasons.
Interestingly though, when I was looking for pain diary apps to use, I came across a self help app regarding muscleskeltal pain which was designed and was being used in Scottish NHS. when I started using a pain app, I told my pain specialist about it and he hadn t heard of this type of pain management, but was very interested in finding out about it. so I sent some of my pain diary logs to look at and plus the Scottish app too. I am looking forward to finding out what he thinks about it and if our health authority might like to trial it!
clearly there is a good case for disseminating what individual areas know and use as treatment for pain or indeed any other treatments. it may be useful to tell my pain specialist about the lignocaine infusions that your area uses.I just reviewed what you both said and realise that your authority's have been using this for ten years, so realistically you would expect that they know about it. so I will get back to you when I find out about it.
if you haven t heard about that app for muscleskeltal pain and self help, I will get the information about it for you tomorrow.
thanks for the feed back and discussion about pain methods and management.

Jun 01, 2014 4:19 AM

Lidnocaine has now kicked in giving me rest-bite, pain still there but dumbed down thanks to the infusion. I've also found that since stopping smoking over two years ago, and cutting down on sugar, eating Cherrys also has contributed to helping my pain threshold.

it's a lovely sunny day here in Scotland today so going to let the heat into my aching joins, muscles etc.

Jun 01, 2014 7:09 PM

glad your getting some restbite from the pain and it does help good weather. I gave up smoking 18 months ago and feel so much better for it. I can t say I ve heard of cherrys helping in pain relief but I might try it.
it's been sunny in the north west to today, so I took my little dog a walk down the canal and it's so quiet and peaceful.

Jun 02, 2014 12:59 AM

yes! it's been shown that certain Cherrys helps with pain, cutting down/out sugar has helped me also as sugar can cause inflamation. I also find a hot bath with 400grms of Epson Salts in'as the salts ease & dumb down the nerve endings in one feet, also good for detoxing the body. I use a Tens Machine when the pain gets too much for me, I feel I have every gadget, pill & cream, not one takes the pain away but they certainly help to ease the pain a little. Real stiff and sore this morning, outside it's damp, wet & murky'say no more. Hope you had an enjoyable walk with your dog, I have two Cocker Spaniels, both of them help me big time, some days can be a challenge though.

Jun 02, 2014 8:19 PM

I know what you mean by having an aray of pills and potions to use against the pain. I have a TENS machine and only use it when I carn t keep pain away medicine wise. I sometimes use a microwave heat pad with wheat and lavindar in. it's good to rap round joints or in the small of my back. I m still working part time but I don t know how long it's going to be before I have to give up. I try to keep as mobile as possible. I have a pedigree Lowchen dog, who's quite little, I feel so relaxed when I take her for walks and she loves the canal and meeting other dogs. winter must be torture for you with wet cold weather. I found that regular trips to a sun bed in winter is quite therapeutic as it warms you body it down to the bones. it kind of fools your body into thinking its good weather rather than bad. I only go every few weeks cause it's not the sun tan I m after. I just have 6 mins on the sun bed and at the very least you ll have a healthly looking glow.

Jun 03, 2014 12:57 AM

I never thought about sun beds etc, & yes some winters can be long, cold & wet' at least winter past was quite a mild one with snow & ice not being much of a problem. I have to be honest here ans say if it weren't for my dogs I don't know what or where I would be today. sometimes when a flare up goes on the rampage through my body it's hard to want to stay on this planet. when I was first told from my pain specialist that pain would change my life' I didn't quite believe her/him. How right they were.

I am very lucky as I'm a freelance abstract artist and when I do my work or commissions I feel no pain during the period I'm painting, but' the moment I stop the pain attacks me big time as unknown to me I've over done the standing etc over the hours while working.

it's not easy, but between my dogs, garden and my best friend life's so worth living but tough.

thank you for keeping in touch as not many people understand what I'm/we are going through.

John

Jun 03, 2014 7:20 PM

I know what you mean about work being a distraction, if that's the right word. I m a young peoples worker and when I am at work, I disconnect personnel thoughts and concentrate on what I m doing a 100% and luckley I can either stand or sit? I am no good at gagging that l ve over done things! until I get flustered and start shaking and all I can think of is getting home and laying down a while.
I know that it is now a matter time and I will have to stop working and I m just trying to stay with it for as long as possible. I want to go through the absence staging and take medical retirement, and which I can then access my pension early. I plan to take another degree once I can t work anymore, otherwise I ll go out of my mind with Bordem.
pain is such a funny thing ( not funny haha), strange, because it changes your life so dramatically and over time I find that I ve gone from me controlling my life to the pain dictating what l do with my life. it's also scary as I don t know how bad it's going to get, as over time pain therapy loses it affectiveness and I imagine it gets to a state where surgery might have to be done and perhaps I ll lose my independence and become reliant on my children. so a few months ago I decided that I m only going to think about pain now and today and deal with rest of it as it comes. I do get depressed at times because it wears you down some days, but I go to bed and get up the next day and try to be determined.
You now what, there are these program's about "the secret life of........", and I think they should look at the secret life of pain because there so much of it that is unseen, like how much pain people have to endure, how much it changes your life, the length people have to go to to try and keep it at bay, and what therapys or treatments there are etc
we could write a book on the A to Z of pain with all the experience we all have!
thanks for replying to me, hope in don t bore you. I

Gill

Jun 04, 2014 9:19 AM

Hi Gill, u will never bore me by writing, as it's great' when im alone and a bit tired with all this pain stuff just know that out there someone else is going through the same, if not' worse!. Since a child I worked, then when grown up worked in construction, on road construction' then linesman on the power lines where I suffered so much pain every day for years cos! I thought I was just overdoing the day before. When I was told pain would change my life I kinda laughed inside at the specialist, thinking I knew better!!! we'll' how wrong was I, change my life!! it almost cost me my life as I've been so close to saying enough is enough. Not now though' kinda like yourself, but as u say It controls me most of the time, on a good day if I just go, just a little after the warning signs I pay big time now.

I've went to the four corners of this earth looking for something to ease my pain, found the best and something that didnt give me any side effects, took my mind off the pain ' gave me that little bit of rest bite was Cannabis chocolate I got while abroad. Wow! what a difference that made to me, that's a few years back now and sometimes I think, maybe again! as I'm getting torn apart all the time, every day, every min. don't know your ethics re natural remedies, but that certainly worked for me.

I had to take my car for new brakes etc today and had to put boots on for the first time in months, so please excuse me as I say cheerie for now. Take care etc.

john


Jun 04, 2014 8:44 PM

Hi John
I work with young people (PC name) and there is no way you can be judgemental and do your job because what you aim for is informed choice and safe use. We have drugs training every few years and that looks likely to be more frequent as new drugs come on the scene. that's the formal stuff!
I had a fall in a shop 14 years ago and landed upright on my knee. I damaged my hip and after a few months they realised I had also damaged my lower spine (that's part of the problems I have now). I was on heavy doses of pain killers but couldn t keep the pain at bay and it was really wearing me down. one night a friend of mine came round and I was in tears with pain, she suggested I try her cannabis joint and being so desperate for pain relief I tried it. the relief I got from pain was amazing plus a good nights sleep, so I now were your coming from.
I only tried it twice and to be honest I forgot about it's usefulness till you mentioned it. there is a wealth of people who testify to its usefulness and so meny people who risk breaking the law for its benefits and they carn t all be wrong. anyway I am pro medical use!
just though, have you ever tried amitriptaline for pain? it's anti depressant but it's now commonly used for cronic and long term pain. I was put on it when l had the fall I mentioned and it transformed my life and has given me years of reduced pain and given me a semblance of a normal life? it really can be a game changer!

Jun 04, 2014 9:19 PM

had a senior moment there and posted it before I had finished! most of the pain I have stems from the accident I had in the shop. although I was getting acute bouts of pain as the doctors said I would and took a few times off work with the pain, I would go back to work and get on with things. last year I d had a couple of really bad bouts, so my doctor felt it was a good idea to see were thing were at with my spine, so I had an x-Ray done and was shocked to learn I had quite damaged facet joints and further scans revealed 3 bulging discs in my neck and osteoarthritis in the rest of my spine. it's causing also sorts of problems to my upper body.
I m still working but I don t know how long that will be for. If I stand to much I get pain, if I sit too much I get pain, if I sleep badly I get more pain, if carry bags that are heavy I get more pain, if I sit in a badly supportive chair causes pain etc I m sure you ll know what I mean, it's relentless and sometimes overwhelming.
I m glad to hear you get some restbite from reduced pain from the infusion and am glad you feel better and a little bit more cheerfully when it's not so bad. I guess it's when the pain subsides that you get some art work done.
well my eyes are heavy and I need to sleep. so I ll say bye for now
Gill

Jun 05, 2014 4:07 PM

Yes! I know exactly what u mean re pain, never ending pain. I don't know what being free of pain is like now, been so long and so tiring, this is coming from a guy who rode motorcycles, climbed the odd mountain, walked trails here and abroad, crazy! sometimes I cannot get my head round it all. I just didn't believe this would change my life down to having to write notes remembering myself what needs. Biggest thing for me is all the folks I thought were friends, people I did lots with just don't visit me anymore, only one person still visits, keeps in touch and at times helps me out. Why are so many people false?? Like u I'm getting tired so will say cheerie for now.

It's good to let things out, thanks for reading/listening.

john

Jun 05, 2014 8:25 PM

I ve been lucky really, I have two brilliant friends that have been friends with me for lots of years. they are not my only friends but the two closest to me and I have a few friends that are good and supportive. I learned to recognise real friends and fair weather friends early in my adult life. I think the real problem is that people see the medical side of you and not person you are and also dictates how they see you and treat you.
People are scared of "invalids/disability etc as if what you ve got is catching, when of course it's not. people see health problems as a sign of weakness even though it could happen to them. and finaly people don t know how to act or be around people who are ill cos it raises questions like "do I ask about there health"or "I m not interested and that might be all they talk about it"! it must be doubly worse for you having been physically active in the past because they probably think they have nothing in common with you now your not as active.
I tell you about a situation i m in at work. because I work for the government our service have had budget cuts and there has been a couple of rounds of voluntary redundancies. I have had a lot of time off this year with my back that has osteoarthritis. if you breech levels of acceptable absence there is a disciplinary procedure, ie stage1 stage 2 etc. I have breech the stage 1 and am due to have a stage 2. while I was off, a work friend told me that my line manager had been telling people "If I apply for voluntary redundance, I will get it"! when I confronted him about it at work he didn t deny it, but tried to say that it was a generalisation about redundance, so I asked him why he used my name specifically and of course he didn t answer. He didn t even do it private/confidentially, so everyone I work with now know I am having a stage 2! They also now know my line manager pretty much wises me to go and take redundance! nice to feel wanted!


Jun 05, 2014 8:56 PM

part two, sorry not to computer savi!
I used to wonder how it was possible for people to accidentally over dose until a few years ago. I take medication morning and night and some of it has a sedative affect and messes with my memory. I had one pill divider and managed to take the wrong dose at the wrong time. I then got two pill dividers and still managed to take them at the wrong time or even forget to take them. I moved the night pills divider to my bedroom and left the other downstairs for morning. I still managed to either take two doses or not take them at all. I then tried an app on my phone which reminded me when to take it. it worked for a while and then the app went daft and was no use. a few times I ve been on auto pilot and put the morning ones in the night one a vis verse. I try to keep to a routine so that it's related to it but still maneged to over or under dose! anyway, that's just the tip of the ice berg, in terms of memory and forgetfulness. I hate knowing a word but not able to recall it, forgetting appointments or things I need. the list is endless. but this is just another aspect related to pain and trying to control it and it's these things that make pain so complicated! anyway your not alone in that.
thanks for replying and listening.
Gill

Jun 06, 2014 8:46 AM

Gill, find out who your manager said that about the voluntary redundancy and talk to them to see if they would be willing to be a witness if need be. Your manager should never had said that in front of co-workers. That is a form of constructive dismissal and if they do force you to leave, then you will have a strong case for constructive dismissal. Maybe go talk to a labour lawyer and see what he/she thinks.

Jun 06, 2014 9:24 PM

the person who told me asked me not to say she told me, so when I had it out with him in public, so to speak, I told him "people have been telling me you........!". from the fact that he didn t correct me suggests he had told more than one or simply couldn t remember who he said what to! plenty enough people were around when he started talking about it and when I got angry. when suggested speaking to a senior worker, he told me that person was on leave and when l suggested I go even higher he tried to say that person was aware of the situation and was ok ing things. however he looked shocked when I said l may speak to HR, he moved the "discussion into the office and started apologising! the out come of that was that I would wait to speak to this senior worker, once they and I came back off holiday leave. I not sure if the person who told me would back me up. so I will speak to a senior worker about the situation and if needs be I will make a formal complain. just goes to show people's attitudes to ill health and pain.
Do you find that with pain it's a constant dilemma? on the one hand you want to look after your self but that you might be giving into it to easy. it always feels like a trade off, if I want to have a normalised life and sanity it means putting up with pain but then you have so much medication so that it's difficult to function. sometimes I push myself so much, I end up flustered and shaking like a dithering idiot and feel embarrassed. Some of the time I work but then I spend my days off just resting and recouperating so that I can go back to work. What are your thoughts about it?
I m now on holiday leave for two weeks. I m off to Rome next weekend, so the idea is to rest and be in the best condition I can for when I go and then I have a few days when I get back to recover. my son and his partner are taking me there, as it's somewhere I have alway wanted to go. it's a bit of a test really, as the last couple of times I ve been away have been grewling despite maximum painkillers and I have ended up recovering for a few days. this time instead of coach travel it's in a car to gatwick and flying to Rome.
anyway, how are you doing, has your infusion kicked in? Have managed to do any work? unfortunately, I m not artistic, just creative at times! what do you paint if you don t mind me asking?
well that's it for tonight
Gill

Jun 07, 2014 1:59 AM

Hi, yes' infusion is now doing its job, I still feel the pain throbbing away in the background but! while infused the pain threshold drops giving me some standard life for the next few weeks. I have to watch as I have given oneself a Flare up while on Lidnocaine and boy was that a flare up. I tend to over do everything when first infused but have now learned the hard way.

Today Sat going to be a nice day as it's lovely and warm up here already plus managed to get some chocolate!! which should last me a week or so, so nice day in the garden for me.

If u go into Google and type John Trevorrow Artist my name should pop up, I'm building a site which is about fin @ jtrevorrowart.co.uk, have a look' firstly I'm an Abstract artist, secondly I think u may like some of my work.

Coffee with no sugar and toast ready so I will say cheerie for now, Ah! Rome' u will love it there as like u it's on my must see list. Last year it was Cyprus fir me as I always wanted to go there, would go back in a shot. Enjoy your day.

Together in pain.

John

Jun 07, 2014 6:58 PM

John, I explored your site. Your colors are so nice and clean. Love your use of line and contrast. Photography was my dream. While I was a part of two showings, it really never took off. Now getting out to take photos is hard. Keep it up!

Jun 07, 2014 9:35 PM

I don t know anything about art, though I should because my dad was an art lover, but your work is amazing. I really liked the moonlight one but would hang any of the ones I have seen on my walls. Dark blue and cobalt blue are my favourite colours. it's strange but they made me feel relaxed and they seemed to have depth to them, like there is more there than you see.
the trip to Rome is to see some of the art work. I want to see the Sistine chapel (I m not religious, I m an agnostic and love theology and may very well do that as a second degree) as religion has played its role at inspiring art and there is so much of it in Rome.
I have been in a lot of pain in my legs and back over the last few days and current pain killers (tramadol or codiene) just don t cover it. I didn t want to go off sick before I took some holiday leave. so I resorted to take ibuprophen, I shouldn t use it cos it affects my asthma, but the odd one or two is ok when I need to be least painful and I am desperate. I am off now for two weeks so I can rest and recuperate. when I am working and it comes to days off, I get two but realistically it's only one as I write off a day to rest and get my pain levels back down!
I hope the weather is good in Rome, as I m looking forward to it. the next place I would like to go is Israel or Japan. my sons partner has a home in Cyprus and we may have a trip over there in the future. my son has been there a few times and my brother lived and worked out there for several years and loved it.

anyway it's late and I need to get some sleep.
Gill


Jun 10, 2014 4:13 AM

Gill, I totally relate to your situation about the need to do things so that you feel like you have purpose in life but the pain gets in the way. a lot. I can also totally relate to what its like when you over do it and the need to recuperate and that it can take days for you to recover to a level where the pain is no longer unbearable, but still there at a more tolerable level.

I cant really offer you too much advice other than try to find a medium where you stay active, because thats important both mentally and physically, but not over do it and end up hurting yourself with the need to take time off work. Always stay conscious of what your limits are and do not go beyond that limit.

I havent been able to work now for about a year. I was off work for 2 years once before and managed to return to work for 2 years but it became impossible for me as the pain caused by simply being up and around was too much for me. It got to the point where doing any regular routine caused unbearable pain and now its becoming unbearable even if I do simple tasks,

Jun 10, 2014 8:30 PM

the only people who understand what it's like are people who also suffer lots of pain, it's near on impossible for me to explain what it's like to my family and for them to appreciate what it's like. they seem to accept I have health issues that are sometimes good and sometimes bad.
Take today, I didn t even think about pain medication before going to town shopping, so consequently was in a great deal of pain to the point I could barely walk and found I had to curtail the the trip. I think it's because l medicate when l feel pain, when perhaps I need to accept a trip out will cause pain and medicate well before. I go!
I m lucky really, in my job I can sit or stand when ever I want and most of my work is verbal as it's informal education. Though in the last year I have taken four months of with my back. when my back is severe all l can do for a few days is lays down. I keep drinks, food and medication by my bed so I only have to move for the toilet. sometimes it's so bad that even the imperceptible movement is enough to take my breath away because of the severity of pain. even though l get down about it, l know that with rest etc it will get to the point I can do things again.
I know what you mean about trying to keep mobile as much as possible. I have pain every day the only difference is how good or bad it will be. The only thing keeping from me from losing the plot is work. my job helps me disconnect from my situation and focus on what I need to do for a few hours.
anyway, how are you feeling with your infusion and your chocolate! have you manged to get some work done?

Jun 11, 2014 12:24 PM

Reading these posts only make me realize how lucky I am. Your determination and persistence make me feel more able to keep moving forward on my own level. I cannot take meds, and am surviving by way of adapting. I see this in all of you too!

Thank you for showing me the 'how to' for survival. I need to put out more effort to move, keep moving and I find the example by reading your posts.

Jun 11, 2014 9:01 PM

I did it again today, forgot to medicate before going out, though this time I took it a lot slower and it wasn t as bad. your right about knowing your limit and not going over it. it's hard to get that right, sometimes you just have to try it and see!
going to miss my bed this weekend while l m away. my son bought me a memory foam topper last year and what a difference it makes, even with a really good bed. finding a good pillow is like trying to find the holy grail. I bought one 6/7 years ago, with a shaped foam core, then wadding round it. I ve had four new pillows in the past six months and l just cannot sleep on any other than this battered old pillow!
I tell you what, me and my friends have an agreement that it's alright to have a rant to each other when we have challenging days. we know it's not aimed at each other and it's the best to get it off out chest and feel better about it, so share if you want to.
well it's late and some sleep is better than non
Gill

Jun 12, 2014 1:14 AM

Just to let everyone know that my Lidnocaine has kicked in now giving me the restbite which make all the difference to my life, back doing my art, editing photos using various apps etc these all help me forget about my pain for the duration of my Lidnocaine 3/4 weeks. Not a wonder drug as the pain is still there it's just pushed into the long grass, mind you! a flare up while on Lidnocaine I cannot even explain. Horrendous!

Let the sun shine on me, not to give me a tan!! ( I'm not vane) but to feel the heat on my joints.

Jun 26, 2014 10:59 AM

Why o' why does such a little bit of gardening create such pain??

Jun 26, 2014 10:59 AM

Why o' why does such a little bit of gardening create such pain??

Jun 26, 2014 5:31 PM

Understand totally. Gardening was once my stress relief, now I rarely try! :-(

Jun 27, 2014 2:59 AM

Once I loose my enjoyment of the garden I feel I have lost everything I either did or loved.

Jun 27, 2014 2:16 PM

I have some orchids, a few potted plants, and my memory makes it hard to remember them! Had a small TIA in December. Going to try and do more this fall and winter...live in Florida!

Jun 28, 2014 2:33 AM

I grow(try) Plumerias, one starting to flower after three years of trying, living in Scotland made this quite a task. I love orchids my favourite flowers, again living in Scotland makes that a bit harder. I can manage my pain but during cold long winter days it's a trying experience. I so hope you get back into horticulture in some form,because I would be lost without it. thank you for chatting away with me, bet it's nice and sunny in Florida just now? keep in touch. John

Jun 30, 2014 10:17 PM

when o' when will I get a normal nights sleep, it's just last 4am had to take medication fir my pain, is there anyone out there who has any good ways of getting a nights sleep??.

Jul 01, 2014 5:03 AM

wish I could help but I'am lucky to get 3hr a night , I have joint hyper mobility and osteoporosis ,so sleep and pain don't mix and on a lot of meds , it would be nice. if anyone comes back with any ideals !

Jul 01, 2014 7:59 AM

I feel lucky when I read your posts. I sleep, but it is not restorative. I have sleep apnea, and learned I have had a silent stroke in the Pons area of the brain. So many body functions are controlled through this major communication area of the brain.

Like honeybee, I wish there was an answer. Good sleep is our key for survival! Without it, it is harder to deal with what life throws our way.

Jul 02, 2014 2:34 PM

Due to trying be normal!!! I tidied the garden until the ache became a pain, "(in more ways than one)" i do nod off only to wake again quite soon stiff all over and pain/s, I cannot explain how sore it is' but do I suffer for trying to be like everyone else. Just a pity I'm not living in the United States where I could get medical grade cannabis, I've read how it helps with pain by taking ones mind off it, it also helps with sleep. up to now that's the only thing I've read about that others swear by, as it helps them big time. has anyone else read similar?? if so I'd like to know more.

Jul 05, 2014 3:41 PM

Like many meds, cannabis affects every one differently. It is only available legally in some states and even then, it must be prescribed. In my state, it was recently made legal, but it is the oil or tincture and that is aimed more for children with severe seizure activity. It is a great help for them. Once I did try some high grade marijuana and it put me right to sleep. Since it was not prescribed, but off the street, it was most expensive!!! Cannot go that route...not being legal makes it a double problem.

Jul 05, 2014 8:43 PM

haven t been on here for a while, l m in the process of changing my broadband provider and it's going to be a few more weeks. this is the first time l have had a good mobile data signal for two weeks!
Have had my lyrica upped to a morning dose as well as an evening dose as l have been having trouble managing my pain by medicine during the day. this is because I have had a strained ligament in. my knee. I have also been told I have water on my right knee, which is part of the water retention in my legs and my other knee hurts too, so it's likely that the other knee has water on it too!
Though I sometimes have problems sleeping, when l do drop off, I can sleep for half a day easily and have missed whole days that way. it's because I have under active thyroid and one of the features is constant tiredness and wanting to sleep all the time. my problem is getting off to sleep, which can take hours. in the past six months I have not dropped off to sleep till 7 in the morning, I m just glad I don t work till the evening!

Jul 05, 2014 8:43 PM

haven t been on here for a while, l m in the process of changing my broadband provider and it's going to be a few more weeks. this is the first time l have had a good mobile data signal for two weeks!
Have had my lyrica upped to a morning dose as well as an evening dose as l have been having trouble managing my pain by medicine during the day. this is because I have had a strained ligament in. my knee. I have also been told I have water on my right knee, which is part of the water retention in my legs and my other knee hurts too, so it's likely that the other knee has water on it too!
Though I sometimes have problems sleeping, when l do drop off, I can sleep for half a day easily and have missed whole days that way. it's because I have under active thyroid and one of the features is constant tiredness and wanting to sleep all the time. my problem is getting off to sleep, which can take hours. in the past six months I have not dropped off to sleep till 7 in the morning, I m just glad I don t work till the evening!

Jul 07, 2014 4:43 AM

life just aint easy having to live with my pain buttons jammed on full 24/7, trying to get a good nights sleep I've given up on. Must be years now since I last enjoyed a real nights sleep like all the "normal people out there". I going through the worst of my pain now as my Lidnocaine has run out and it's three weeks before my next infusion. Its a nice warm summers day outside but I'm so sore and feeling tired to enjoy. I remember when first diagnosed being told that pain would change my life inside out, how right they were. The most hurtful thing is discovering how many real friends I don't have!! don't see a soul nowadays, kinda sad that human beings don't behave like human beings should, maybe just me because I thought stupidly I had real friends around me, all I want to do is join in with people again. That's my grumble fir the day done and dusted, just hope everyone out there are fine although being sore.

Jul 13, 2014 5:18 PM

One week down till your next treatment! Went to the mall. Have always enjoyed 'people watching' so I enjoyed that. Feet did OK till I got home. Tonight be an 'feet on the rocks' night. I soak my feet in ice water and it helps. I feel most fortunate that something this simple works for me. Hope you are at least able to sit in your garden to soak up what good feelings it can give you.

My life is quiet. If it was not for my partner getting me out, at least for a drive, I could be called a hermit! Take care...

Jul 14, 2014 12:35 AM

Thank you for thinking about me, I received a phone call from the hospital I use telling me they have brought forward my day for tomorrow Tuesday, two weeks earlier has pleased me no end. I know about being stuck indoors, I do drive but usually too sore to bother with it.

Hope your fine etc, talk again soon.

From a sunny Scottish morning.

John

Jul 16, 2014 4:41 AM

Just received my Lidnocaine pain infusion, my pain has now settled down meaning I can do things again for a few weeks. Lidnocaine has/is my saviour as it works a treat on my pain, it does not take the pain away, it soothes my pain meaning I can smile again until it runs out. I'm so surprised, maybe shocked that very little is known about this treatment outside Scotland.

Jul 16, 2014 7:28 AM

Enjoy you pain-lessened time! Glad it is available to you.

Jul 21, 2014 2:57 AM

Why not make it available to you also, there's 12hr Lidnocaine patches also available, no use to me as me pain is throughout my body. worth asking for, No! worth telling whoever you want this treatment either through infusion or patch. hope you are fine etc. John

Aug 10, 2014 7:06 PM

Finding the need to create over taking me. Used to do sculpture, both wood and clay. Love papier-mâché. Hey, that auto correct did that just right! Right now all I am doing are small bits of crafts as gifts. Creating makes my spirit feel good. Even the crafts can help lift me. It is the starting that is so hard. Anyway...hope you are creating at your side of the world.

Aug 11, 2014 8:15 AM

not much creatively happening this side of the world, over the past week the weather changed from fine to storms, rain, hail stones and gale force winds, remnants of the Hurricaine Bertha seemingly. my pain has shot up, been in bed until lunch time of a few occasions now, "that's just not me" as I like to get up with the Cockeral. I'm so sore, feeling crap with cold sweats thanks to the medication I'm stuck with. I hope this is just an interlude in the weather before the cold Scottish winter creeps in. my lack of creativeness is mainly down to spending all my time in the garden in the hot sunshine, but as you say' it's getting started that's the prob, usually when I get started I get right into it. I have appointment with my pain clinic the end of thus month as I feel I need my medication changed as it causes as much problems as it sorts. Glad you are getting little things started, from small acorns as they say.

you take care and hope to hear from you again sometime soon

john

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