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When you're Not believed

Aug 28, 2016 5:08 AM

Hi
I'm an amputee of 2 years, I have been suffering from phantom pain since the day I had my lower leg removed.
I live in New Zealand where we have the Accident Compensarion Corporation - where if you have an accident that stops you from working they will pay you 80% of your wages, assist with rehab etc. my amputation was a result of medical misadventure - basically I had a broken foot which was diagnosed as a sprain I then got an infection in the bone and my foot turned to chalk.
Anyway I pushed myself to get back to work after 3 months - I worked for about 3 months until the constant pain and resulting fatigue, nausea etc meant I needed to take a leave of absence - my work were good and gave me 3 months of where I tried new drugs (gabapentin and amitriptyline) both of which didn't agree with me. Physical therapy, psychologist etc.
Got back to work, 3 months later a crash again due to the pain and fatigue.
I've been off work since then, I've lost my job and relying on ACC
I received a letter today from them saying that they don't believe the reason I am off is due to pain, but due to the fact I am depressed.
I'm depressed because I'm in so much pain and I am so tired - but I still work at PT see the psychologist
I still want to work - but couldn't at the moment - I don't think anyone would employ me with the unstable way the pain makes me.

The next option the doctors advised would be morphine or Oxy - but considering I'm a zombie on tramadol - I don't think that will get me anywhere close to going back to work.

I'm reluctant to try these as they are both addictive - but if it would get me out of bed and be able to function will give it a go

Aug 28, 2016 5:20 AM

You will be depressed due to the pain not being managed! Don't be pushed around by ACC. Get a specialist ACC lawyer if you have to. Make sure your GP is aware of what ACC claiming your inability to work due to mental health issues NOT pain. Ask your GP to speak to or email your case manager... They are vital advocates in this situation.
Hold your head high... ACC is required to look after you... Don't be pushed around...
I'm having struggles with ACC too, so you are not alone... NZ being mismanaged by ACC so they can not meet their obligations... And make a profit!!! NZ'er deserve better!
Wishing you well, stay strong!

Aug 28, 2016 5:23 AM

Thank you so much - I'm glad that you replied it's made me feel so much better - I hope you do okay with your ACC issues

Aug 28, 2016 5:45 AM

Hello JMB ⚘so happy to meet u.
Im so glad u have great advice from Chchkiwi 🌻 its good advice.
All i can say isπŸ€— dont give up... you will get there in the end sweetie 😚

Aug 28, 2016 5:46 AM

Thank you so much - it's so very hard sometimes when people can't see what the issue is - I mean the leg is gone - but the pain hasn't

Aug 28, 2016 5:51 AM

Its a well known fact hereπŸ€—... im sure ..."phantom" limb pain bcos of the signals being sent by the nerves...πŸͺ making the brain perceive the pain...🐫 its still pain. U r not loosing the plot... u r bound to feel depressed bcos ur pain is not managed correctly! . I am shocked they are being so hard on u 😚

Aug 28, 2016 6:05 AM

Hey jmw,
Like everyone else has said, your pain is real and you do not deserve to be treated the way that the ACC are treating you. Phantom limb pain is very real and can be very painful it's caused by the nerves misfiring, this happens in lots of conditions and basically means that the nerves are sending the wrong signals to your brain which then interprets it as pain. Another thing that can cause additional pain is the muscles of the remaining parts of the leg can become very tight and stiff. There's a few treatments that have been tried designed to help these muscles and the nerves. Private message me and I can tell you a little bit about them and see if I can find them online. You could also check to see if you can get it on your insurance or health scheme.

Gentle hugs

Aug 28, 2016 11:35 AM

Not being believed about this is unbelievable to me. I don't know what is available to you in NZ but I just read an article about ketamine treatment being helpful for the condition of phantom limb pain. It may be controversial but I'm hearing more about it--I just wanted to let you know because the article specifically mentioned phantom limb pain being treated with good results. Anyway it's something you can look into if you're inclined. I'm so sorry you're going through this at all, let alone not being believed and supported in the best possible way. Wishing you relief and comfort.

Aug 28, 2016 5:27 PM

I'm so sorry you're going through this jmw! I don't have any additional advice than the others. Hugs love & prayers your doc can help you with the ACC issue! πŸ™‚πŸ’•πŸ™πŸŒΈ

Aug 28, 2016 6:14 PM

JMW, I'm so sorry that you're having such a problem and that you're having so much trouble with ACC. Do not give up!! You can get through it and you have found the right community and people to help you. Bidding you welcome and wishing you all the best. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Aug 28, 2016 6:40 PM

Sending smiles jmw. I have been on both the gabapentin and amitriptalyne plus tramadol. None of which work really well apart from making me nauseated and giddy. Hope is out there we just have to keep trying something different each time another drug etc fails πŸ˜„πŸŒ»

Aug 30, 2016 10:38 PM

Thank you so much

Aug 31, 2016 9:37 AM

I'm so sorry you've been through all that. I was very reluctant to go on perocette for pain for the same reason you are. The pain clinic explained to me that there is a difference between dependence and addiction. That helped. Taking it has given me some of my life back.

Aug 31, 2016 9:41 AM

Oh and I lost my bladder 17 years ago and I still have phantom pain. It's wicked.

Aug 31, 2016 12:07 PM

JMW, Welcome. I have a question for you. Has PT ever mentioned to you the possibility of trying mirror therapy for phantom limb pain? I know I don't experience the same kind of issues that you have, but there is an individual on YouTube who does.
Her name is Christina, YouTube channel is "The Amputee OT". She's got really good videos explaining alternative therapies.
Just a suggestion.

Aug 31, 2016 5:11 PM

I was going to mention mirror therapy. Anything is worth a try. Good luck to you. Stay strong and don't give up.

Aug 31, 2016 5:15 PM

I saw that on House... ⚘
Hi 5 LMB🌹... interesting conception 🐴

Aug 31, 2016 6:22 PM

Mirror therapy is supposed to be very effective and although house is inaccurate due to dramatisation, part of the principal is to tense the muscles so that they can relax. Many other therapies are worth a go too. Sorry, I had tried to PM you but you don't have a version of the app that allows it and then with where my pain level has been the fog made me forget. I will try to collect my thoughts and ideas and write you a few paras in the morning (I'm in the UK and it's 12.22am)

Sep 05, 2016 6:53 PM

As others have said, the mirror technique is worth looking into.

I actually find it a lot easier to function mentally on morphine than tramadol. The pain is only slightly improved but compared to the tramadol, the slow release morphine is nice and predictable. I'd find myself having mood swings like a yo yo and the pain fluctuating a lot on tramadol but with the morphine it's more consistent - it does just about last the 12 hours it says it should. It still makes your brain a bit fuzzy though.

This is all just my experience - obviously different things work for different people. I hope you find something that helps.

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