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Chronic pain, nerve pain progression

(6 Posts)
roadkillbunny Mon 16-May-11 13:39:06

Hi, I suffer from chronic pain, a lot of nerve damage and it is progressive however when I had my first child nearly 6 years ago things got allot better, I had a focus, my medication found a good level and in that time I have done a pain rehab physio course, I now also have a 3 year old as well however over the last say 6 months or so I have been having my first progression in some time, at first I ignored it and hoped it would go away but over the last few weeks it has really stepped up several gears and I have gone from having dulled sensation and mild(ish) pain in my hands and feet (main pain area is upper abdo and lower torso) to now having no feeling except pain in my feet. Nerve pain as those who have it will know is very hard to describe but the pain levels are so very high and I am struggling to walk, took a pushchair on school run this morning just to help me walk even though dd was riding her bike and ds had his toy pram, any pressure on the ball of my left foot causes such a searing pain sad

I take Oxycontin, Oxycodone and pregabelin and have a supportive dh and good friends who are able to help but it is very hard right now as I have managed to be very independent for the last 6 years so it is tough to be back to struggling, felt like the evil wife with a whip yesterday having to say to DH all the time 'lunch needs making', 'dinner needs cooking', 'bath time needs doing' and all the rest, he is very very good but it is hard for both of us, he has to work and worries about me managing at home, the house is a tip and even though ds was at pre-school this am I couldn't do anything about it, just sit among the toy chaos sad

I need to see the doctor but we are rural, dh has the car for work everyday and anyway I can't drive right now, a friend is sorting an appointment out for me and taking me as well as picking my dd up from school today but I really hate being so reliant (especially as this friend has ME and isn't having the best time herself). I am also worried that my hands are going the same way, they are more painful then normal but not having the same issues as with feet for now, feeling returns after a short time but I am scared, I can just about manage with the loss of my feet but my hands, it is already bad enough that you would be silly to hand me something that breaks as I can't tell when I have hold of something and drop stuff all the time, I am very clumsy with my hands and it is taking me forever to type this with all the typos to try and correct!

I am also exhorted constantly and my mind has gone so scatty I can barely think, I am normally reliable and fairly organised but in the last few weeks I have forgotten to pick a friends child up (bloody mortified about that), miss read a letter even though I read it a few times and only found my error when I called to move an appointment for that day to find out it was on the same date of the next month and thought I had put something in dd's book bag when I hadn't even though I passed it over 4 times sitting on the side, my brain only connected the dots hours later. All this could be down to a few things, increase in my pregaberlin, not sleeping well with pain, the extra tiredness chronic pain brings on and also I think I am probably depressed.

I don't know what the point of this is other then to get it out and see if there is anyone who understands, I am feeling so hopeless right now, and angry with my stupid body and brain, upset for my children (who are very good and seem to understand but it just isn't fair is it?) and I am still hoping that this progression would just go away sad

PigeonPie Sun 22-May-11 20:08:45

Sorry for not replying sooner.

You poor thing - I hope that the GP managed to give you a bit of hope. Has s/he referred you to a consultant?

I'm fed up with nerves too, but they aren't affecting me as much as they are you at the moment. However, I do have a shopping trolley to help me walk as my DSs (5 and 3) are also a bit big for the pushchair now.

I've got a Sholley which, although it does look like an old lady's trolley, at least keeps me vertical and gives me somewhere to put all the crap stuff which DS1 needs to take to and from school. I've certainly had some envious looks from people, particularly at the beginning and end of terms when they've all got armfuls! I chose this one because it's got movable front wheels, so feels more like a pushchair and is really easily manoeuvrable.

Anyway, I hope you've been given some relief.

PigeonPie Sun 22-May-11 20:56:29

Amazingly, DH has just shown me a short TED talk (Technology, Education & Design) about nerve pain.

See it here

There are loads of talks on all sorts of different subjects. Hope it helps in a small way anyway.

sazza76 Tue 24-May-11 22:02:09

Hi RoadkillBunny,

Sorry to hear things are so hard for you at the moment. I have nerve damage in my jaw/face and in my rib area. I have a 2 and a half year old and I'm married.
A lot of what you describe really hit home with me. I often have to rely on my husband and then you feel guilty and you get into a viscious cycle. I also am very forgetful and struggle to concentrate because i'm just in too much pain. There isn't enough room in my brain for the pain and everything else! The other thing I find the most difficult is not being able to sleep, tiredness just adds to everything else.
Have you ever been seen in a pain clinic? I can't emphasise enough how they are the best people to advise you. They see people with chronic pain all day everyday and they know what works best. In my area they have a psychologist who specialises in chronic pain which is another thing that can help. I have a Fentanyl patch, it releases Fentanyl slowly into my system constantly. I find this works best for me because you dont get the peaks and troughs in your pain levels like you do when one tablet dose runs out and your waiting to take the next etc. I didn't get on with Pregabalin at all and you might find that the increase in dose is affecting you, but this should be temporary. The other type of drug thats good for treating pain is a low dose of something like amitriptaline, I am on Nortryptaline.
I might be wrong but I've always felt depression goes hand in hand with chronic pain for most people at some point. I have ups and downs but have had severe depression in the past from it. I think you get to a point with depression where you just can't see out and you need a little help. Please, please tell your Dr how your feeling, maybe you need to take an antidepressant for a while just to get you through this time.
The only other advice I have is, Be Kind To Yourself! We are often our own worst enemy, we beat ourselves up about all the things we cant do and all the things we thing we are doing to let people down. All any of us can do is our best, and life with chronic pain is bloody hard, we all need a helping hand from time to time and whats wrong with that?
Please feel free to private message me if you want to chat or there's every anything I can help with
Sazza x

roadkillbunny Thu 09-Jun-11 00:31:13

Hi, sorry it has taken me so long to get back to this, there are massive issues going on in life for me outside the chronic pain and I have been trying to deal with it all, still trying but that is all something else.

Thank you for getting back to me, it can be quite an isolating experience living with chronic pain, it is very hard for people who don't suffer to understand it especial with nerve pain as it is next to impossible to describe!

I am doing a little better, I have gotten more used to the new pain, my pregaberlin has been increased to the maximum dose for my weight (makes me want to put on some weight lol!), it is such an expensive drug, my GP and I ended up talking about it when I saw him as the computer system flashes up a warning about the cost of it when he enters the increased dosage. We worked out that last year, on my lower dose it over over 7K just for that drug alone, unlike gabapentin it is not available in a generic yet hence the cost, makes me feel a tiny bit guilty as I haven't been able to work enough to pay national insurance and tax for 8 years, but then I think how much of DH's wages go out in taxes and feel a bit better about it!
I have also been re referred to the pain team as a year ago I did a pain rehabilitation course run by the physio department, it was really good and taught me some really useful stuff and clarified things like how to pace, something I have always struggled with and got me thinking about my own needs a bit more, I have a much better social life now as I know it does me good and I am able (mostly) to pace better so I am not completely spent by the evening, however, doing the course automatically discharged me from the pain team (I bet that's all due to them needing to manipulate figures for targets) so it now needs to be done as a fresh referral, luckily the never seem to be long in getting me in. Only the pain team can adjust my Oxycontin and oxycodone, my high risk pregnancy team were able to do it to but my GP understandable just won't touch them so I have to wait it out, I am better for more pregaberlin though.
My hands don't seem to have got any worse in the last few weeks, my typing is still way, way off and I am dropping far more thing (who bloomin' bottle of Dr Pepper today all over the stable yard!), good job I don't have a small baby any more or have to do fiddly this like nappies and poppers, trying to look on the bright side.
The GP has given me the non pregnancy depression questionnaire to complete, things have got much more complex because of things happening outside the pain issues that are also having a huge impact on my mental health and my GP (and I) want to try and sort out all the diferent issues and emotions before going to medication so we are in a bit of a holding pattern with that right now, was due back next week but I am not able to go as ds has some medical stuff happening next week, I will go back to him as soon as I can though.

Over the years I have seen chronic pain go from this almost dirty word that had connotations of 'it's all in their heads' and 'lazy doctors' to an area of rapid research and breakthroughs.
Back when the chronic pain label was fist attached to me nearly 10 years ago in a big city and specialist hospital in Liverpool where I lived at the time there was one lone pain consultant, he ran himself ragged, was the butt of in jokes among doctors and did every single procedure himself from nerve blocks to acupuncture because he couldn't get the young doctors to come work with him unless they had no other option. Now things are so different, I am in Oxfordshire now which is also as it happens home to the very first ever pain clinic, over 100 years old I think, very well respected, large staff, it's own clinic suite, a full range of services from on call pain nurses who patients can call when ever they need advice to psychologist and physiotherapists. I know the Liverpool service has gone along that way to. Back then you got the label of chronic pain and nobody wanted to go never you (medically speaking) they just left you to rot and said there was nothing to be done now it is properly recognised, research is whipping along and we have far more names for things, chronic pain isn't a diagnosis any more, it's an umbrella term. People are looking into why it happens so they can better understand how to treat and manage it, it is truly breath taking the difference in attitudes and management in 10 short years. All that said, when you are suffering from pain, when you are in a bad time with it not a bit of the above matters, you just want the pain to stop.

I have had so many drug combos I could become a pharmacist I think (medical staff have often assumed I was a fellow medical professionally!), I have done the amitriptaline, was on gabapentin for years prior to shifting over to pregabalin because maximum dose just wasn't doing anywhere near enough any more. That family of drugs are a shocker to go on and change doses, I had to come off gabapentin when I was pregnant as it can cause birth defects if taken in the first 2 trimesters but by the thried trimester things were so bad for me both time that I had to go back on, as I had a toddler at home with my pregnancy with ds they had to admit me to hospital to manage my pain and to put me back on gabapentin, they didn't feel (and nor did I) that it was safe for me to be at home while upping the dose of gabapentin!

I guess what it comes down to is that over the years I have become extremely aware that even with the advancements that have been made there is really a very limited amount that can be done for me, you can't get a nervous system transplant (always on my Christmas list though!) so it is down to physio and meds, there is only so far you can go with meds, I am on the strongest types of meds so all that can really be done is up the dosages or possibly change type. I find it very depressing the idea of my medication just having to increase and increase, never to reduce, I suffer and muddle on longer then I probably should because every time my meds are increased I feel a bit like I have lost a battle. When I had to go on morphine, so the start of the opiate road, I cried for days, I went to my pain doctor and I shouted and cried at him to please help me but he didn't have anything else left, I have tried almost everything from nerve blocks (worked to short a time to be viable as the risks were also high) to acupuncture and homeopathy to no avail. I hope the new research will as well as the understanding it is giving be able to give more new treatment hopes in the future but until that time I and all the others just have to sit tight and do our best.

Sorry for the massive post. I am rambling I know so I would be surprised if anyone managed to read it. Thanks for the time if you did get this far though!

sazza76 Wed 06-Jul-11 00:13:45

Hi Roadkillbunny,

Thank you for your post, I dont want you to think I've not read your response I just havent had much of a chance to reply. I completely agree with everything you say and it's quite nice to hear someone who has similar experience and viewpoint (though obviously its not nice you have chronic pain!).
I will do a longer response when the pain lets me think straight, but in the meantime please feel free to contact me if you would like to stay in touch.
Sazzy

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