CRPS and My Virtual World

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6 years 8 months ago #20738 by grappers
Replied by grappers on topic CRPS and My Virtual World
Kim, had the same problem during my drug trials, because they had me on multi medications at any one given time, they blamed the side effects to withdrawals, as medications of one sort had to stopped straight away, like you said endep, they tried that on me under the guise of helping me get to sleep and help with pain, well it didn't work, but was great at stopping my bladder working, I have been through every pain medication on the market, all drugs to do with depression, anti spasmodics and anti epileptics, there is only one that I have been able to tolerate and that does work to some degree and that is kapanol, recent change over trial proved a bad experience, but I had to try, otherwise lose the risk of losing the one medication I can tolerate, the worse meds for side effects were the antiepileptics and antidepression drugs, followed closely by Methadone, that one made pain worse and every inch of my body.
I do have the stim implant, and lucky I have not had the problems with migration like you have, but the pain relief is on par with what you did get, but reverse when lying down.
The person who changed my life the most with coping with CP, and the only person who really took notice on what drugs were doing to me was my Psychiatrist, believe it or not he is part of my pain clinic at the public hospital I still attend, the pain doctor just kept trialling new combinations, where as he put a stop to it, it was rough coming down from all the meds being pumped in, even though once clean from meds, the pain was bad, but I was feeling better from not having all the side effects, it was also the time when they said they had not trialled kapanol, would I be willing to give it a try, I did but started at a low dose, to start I had problems with constipation and little else, it was then raised to maximum dose.
Funny though damage has been done now, when I damaged my shoulder, it was the usual treatment of cortisone injections, first one was alright but didn't do anything, second one they decided to give an extra strength dose, well side effects kick in, felt like a truck had just hit me combined with the worst case of flu, so now cortisone is marked on my list of no no's.
Even the flu jab which I have to have every year, can't have the normal flu vax, has to be the expensive alternative that is not derived from eggs , once you develop intolerances it seems a downward spiral to any other medication, I get lots of unexplained rashes that pop up any time of day, the itch can drive you crazy, not allowed to use soap based products, or any petroleum by products, vitamin D I can't produce, so it has to be high strength substitutes, and testosterone I don't produce , that is an injection every three weeks, all gone to since drug trial days, but you are never warned that this may happen.

Don
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6 years 8 months ago #20739 by Johnno
Replied by Johnno on topic CRPS and My Virtual World
Hi guys,

I feel blessed I see my GP every f/night and get a new script for pain killers and he checks me to make sure I am ok , my pharmacist is amazing they will check with me and or my doctor in regards to dosage etc.

I can call in at the chemist and just sit down and chat which has probably kept the black dog away more than once , you never get over the feeling of despair you just have highs and lows , I now try to give myself a goal which is far enough away to keep me thinking about it .

I see my physio every month and my psychologist monthly .

I am on the maximum dosage of 300mg Lyrica twice daily and it has really helped to relieve the nerve pain from my right hip to my toes , the pain is there but the excruciating pain is now bearable whereas I am able to handle working Monday ,Tuesday ,Wednesday off then Thursday ,Friday on and weekend off .
I am sorry to hear that some have had such adverse effects to Lyrica but I had some wild experiences with pristiq but then again we all have different reactions .
The only thing I could recommend is to keep on trying different meds there will be something that will help , I will sometimes use panadol osteo as they can be a good option but again please don't take my advise I am not a doctor .
I called Sally @ The Wesley Hospital yesterday to have a chat and I find they are all very helpful there and will call back if they are busy which I think is awesome .
The one thing that sticks in my head is to pace yourself
Johnno

as long as I wake up alive I'm happy
Because it could be worse

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6 years 8 months ago #20741 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hey Kim

Now excuse any typos but I am tapping away on my ipad. If I hear you correctly you are talking about the option of ending the pain via endng life!!? Well this is a point I know well, there have been times when I have said " I just don't think I can keep doing this" usually I am sleep deprived and in your case you have just been told it's more than likely spread to your hands- you have hit rock bottom,you are angry and striking out at family - this is normal so dont berate yourself, peters advice on this one is good. You are also fearful and have a sense of despair and hopelessness- does this sound about right?

I still end up rock bottom BUT I have learned to focus on the fact that I don't stay there and can will be in better shape mentally, with less pain in the future. Can you see that at this point in time you are overloaded? Now is not the time to make any decisions about life. You have options and can seek help via your GP who can arrange some urgent councelling perhaps. See how you feel in the morning. It is often the hardest thing to recognise we need to ask for help and when we are not coping. You have come this far so don't let crps win, there is still life despite the pain.

If I have misunderstood your words and you were just venting, ignor my serious response. No you are not alone, many of us are doing it tough and are here to help each other so hang in there and let time soothe these raw emotions and allow you to think more clearly.

End of my rant! Apologies if I am totally over the top but I care.

Josie
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6 years 8 months ago #20743 by Kim
Replied by Kim on topic CRPS and My Virtual World
thanks peter joise don and jonhnno, As i said beforei know now i should not take it out on my family i get that.
Im worked up most of the time when im awake due to my pain levels i take 3x60mg zyprexa to sleep and thats when im at my best as they knock me out,the more i focus on something other then pain it makes my pain worse, i do get counselling every monday but it isnt a Psychiatrist there isnt one in bundaberg it means i have to travel and i dont have money to do this.

i spoke to my doctor today he wants to change the cymbalta but apparently you need to wean off it so i need to wait 2 weeks but after he told me about cprs into my hands i just dont see a light at the end of the tunnel.
(sorry about the bad spelling) all i feel is pain when im awake and i dont want to feel anymore.
im not so much fearful i have just had enough and dont want to be in pain josie.
Don seems like so much alike you know, man they wont give me nothing, i would rather be asleep 24/7 then feel this pain i have asked the doctors all of them and i get the same response you have had all we can give.
so my statement stands in a degree for me this is it ? for me

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6 years 8 months ago #20744 by Johnno
Replied by Johnno on topic CRPS and My Virtual World
Just something to ponder

Johnno

as long as I wake up alive I'm happy
Because it could be worse
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6 years 8 months ago #20804 by Punk265
Replied by Punk265 on topic CRPS and My Virtual World
I am so pleased I stumbled across this forum topic tonight and I apologise in advance for the ramble to follow! I have posted only a few times on the forums previously & seem to go long periods where I'm disengaged, but it's nice to have a place to turn when needed; whether it's for support, information, venting, sharing or for reading other peoples experiences and taking something away from them.

My condition has worsened over time, to now encompass CRPS in the diagnoses (along with peripheral neuropathy and chronic pain) and trying to explain or illustrate it not only to friends/family but also your loved ones, is very hard. I don't blame them for the lack of understanding, but it does frustrate me from time to time, so I have now asked my partner to come along to my rehab sessions so he can see how hard I work, to still have limited functionality (I walk with crutches & have a wheel chair for when needed). To me, I feel this will show him just how much these conditions actually impact me away from the walking aids and positive personality, I know he knows if that makes sense?! But I think these sessions will add another layer of perception to it all for him. I don't know if anyone else has done this or had success with this, but I'd be open to other suggestions to help him understand better? At the end of the day I know that pain is a very personal sensation/perception that no one else has the capacity to understand (except for everyone on these forums), so I don't have a high expectation from others around me & I think that also helps in adjusting to pain.

I am fortunate to have a very intense 'detachment' side to my emotions, so being that way has enabled me to accept my condition as 'it is what it is' and try to focus on moving forward in life, despite the hurdles thrown in my way.... But not everyday is (or has been) like that & I have also felt so isolated and withdrawn from my previous life that I understand what it's like to be feeling like you want the pain/life to end. I think once we grasp that 'acceptance' side of things, the world softens a little bit and moving forward seems a bit easier than yesterday, but it's certainly one day at time. I also find focussing on what you 'can' achieve, as opposed to what you 'can't', makes a big difference in the daily pressures you put on yourself.

I struggle with pacing but I make the most of my 'good' days & even on bad days find it in me to smile. I have been through phases early on, where I begged daily (through lack of understanding) for my leg to be amputated, where I just wanted to be 'high' on medication to stay away from the new reality of pain (referring to hospital, my longest admission was 3 months & I was written up for extraordinary amounts of pethidine 2hrly, on top of numerous others) & often finding myself seriously considering taking a knife to my own leg once initially released from hospital, to now being relatively calm and adapted to my 'new life'. In saying that, I still climb new hurdles frequently and am still learning my pain boundaries when pushing myself too hard etc and of course I do still have many bad pain days where it's very easy to let the harsh reality of pain consume me, but as I said before - there's always a smile somewhere within and a fantastic pain forum to turn to that I'm highly grateful for despite being a minimal poster here.

Sorry to ramble and I haven't even gone through everything like meds, surgeries, treatments and scs!! Hope this finds everyone well as can be and I hope that you're feeling a little better this week Kim.

Peripheral neuropathy/CRPS/Chronic pain

Keep ticking off the attainable by focussing on the 'Can' rather than the 'Can not' in your day.

It is what it is, tomorrow's a brand new day.

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