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Pain Concern
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Hi I’m Nexia121, diagnosed with CRPS

Hi I’m new to this site and unsure what to expect to be honest. I was diagnosed with CRPS only last week after a back operation in June last year. Nothing went wrong with the op but my nerves just haven’t settled back down I suppose. I’ve been really struggling with the pain but mostly I’ve been struggling with my emotions and my frustration with being in pain all the time. I’ve even starting to hate people around me for doing the things I wish I could do. Is this ‘normal’? Will this go away? I also suffer from depression and have done for many years so I know this will be affected by everything going on.

I guess I’m rambling now but I don’t have anyone at home to talk to or to help gauge whether my emotions are normal at this stage.

Would love to hear back from anyone, doesn’t have to be with any advice just a friendly hello will do, maybe so I know I’m not alone with feeling this way.

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Wish you all the strength to overcome the pain and depression. 😊😊😊😊Dave

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Thank you, I appreciate it.

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Hello Nexia121 and welcome aboard.

One thing about this pain concern forum is we always expect the unexpected!

None of us are Doctors but use our wealth of knowledge and experience to help and support everyone who comes here

Don't ever feel alone. Sometimes a reply may take a while due to members pain levels or other commitments.

Meantime if you go to the top of this page on the right..there is a search box. If you type in CRPS it will come up with all posts on that subject. Or if you have a specific other topic..type that in. You can spend days listening to them all!!!

So post a question here, have a rant or just pop in with whatever you like. No one judges you and may even be able to answer your queries

x

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Hi , nexia i am to like you i seem to misplassed my friends, they dont seem to remember my number to call a ill person to take to lunch or stop over..there busy moved on or working . I was a giver. I cant do anything i used to do. I took that time to learn to knit n crocket, something lost from our generation. So i replaced the sadness eith just things like that. My fam is in fl. So i scrape n save n go see my sisters ounce a,year . It helps..welcome

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Hi nexia. Sorry to hear you are struggling. If you don't mind me asking, what type of back operation and how long ago ? Also the medication you are taking and how you feel about it.

I had back surgery 18 months ago. I'd say it took me a full 12 months to recover and even now the muscle wastage is significant. I am 67 though.

Feeling resentful of those who have their fitness is a common feeling. I range from weeping for what I have lost to bitterness. Doesn't help that I have a cycle obsessed husband.

I hope you find support and encouragement here as well as practical suggestions. I certainly did and still do.

Dee

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You are older than me Dee!!

x

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Hi Dee,

I had a discectomy and a disc decompression in June 2017, so nearly 8 months ago now.

I take naproxen, pregabalin, morphine-based patches, oramorph and lidocaine patches. I’ve just had my morphine-based patches increased to 40 micro grams per hour and although I feel quite groggy on them occasionally, it does seem to just about take the edge off my foot pain. I use the oramorph if I have any breakthrough / flashes, I have about 5 episodes a day lasted from 5 mins to an hour.

I’m 32 and I’m seeing “friends” get engaged, pregnant or married, whilst I’m in pain all day and on my own. The only company I have is my parents who I live with and a few other family members who pop in time to time. I know I’m bitter and angry but that doesn’t stop me feeling hatred towards the people who are moving on with their lives.

This is the first site/forum that I felt comfortable posting on as I had looked through previous posts and liked the advice, encouragement and support everyone seemed to give each other.

Sorry for the long reply!

Nexia x

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Hi Nexia. You do sound as if things have got horribly bleak but there should be ways to improve things.

I discovered how much my frame of mind influenced my physical state and how I cope with it. You have seen your life narrow and diminish and are suffering the consequences of that interlinked ked with the pain.

The most important thing you can do is to make an appointment with your doctor and tell him / her what you have outlined here. Ask for an urgent referral to a Pain Management clinic. This service varies from region to region but should offer a course on helping you manage and deal with your pain through a variety of techniques. They will also offer medication review and advice and possibly physio if that is appropriate.

The hardest thing, and one I am still struggling with 5 years down the line, is that there is no magic pain killer and that possibly you will have a degree of pain all your life. Note I said possibly and a degree of pain. I am not medically trained and don't know about your individual condition.

Social isolation is not good for your or your ability to cope with pain. Maybe we can talk about that later. I have found study gives me a focus but that's not for everyone.

Wishing you a better day. P.M. me if you feel the need, at any time or just keep posting here. It's not as good as face to face support but we all understand which is a bonus.

Dee

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I think your feelings are normal. I went through the same sort of stuff. I've had spinal surgery, two hips replaced and a whole load of other stuff. I started feeling really angry and depressed when I lost my job and reached the understanding that I won't work again. Also that I'll be in pain for the rest of my life. It's ok professionals telling you that you need to accept it, but it's hard to come to terms with. Good luck with it all and welcome to the club!! Carol

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Hi Nexia,

So sorry to hear about your diagnosis. Just this morning I received a gmail ftom Dr Axe and he listed 10 foods that make pain worse. So perhaps you could Google his article. He believes in natural remedies which don't have the dreadful side effects. Then I wondered how you manage to do shopping or cooking. Hopefully you aren't dependent on ready meals as they seem to 'pile on the pounds'.

I'm praying that you'll find relief - and soon.

Love Jean

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Hi nexia what is crps I too have had a back op that went fine but has left me in severe pain. I'm fed up with people too lol

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Dear Nexia. Your emotions are completely normal because you just want to be your old self again. Nerve problems are a cruel illness. I had a routine laminectomy as I'd fallen at work years earlier. I worsened 12 years later hence the operation. The nerve was stuck to the bulge on the disc and the surgeon prised it off - I asked a neurosurgeon afterwards why the orthopaedic surgeon would not have left a sliver of the bulge on the nerve rather than disturb the nerve he looked at me so sadly and shook his head. Firstly for anyone out there don't have a back operation unless absolutely necessary and you want a neurosurgeon not orthopaedic surgeon for back operations. You need the correct pain clinic who will have sympathy and compassion. There is something called a spinal cord stimulator which may help your problem which only some pain clinics offer so look into that. Also have a look at the arc4lhealth. I do not know if it works as I have just sent for one. My own nerve pain is so flared at the moment I'm scared to try anything. I'm also trying homeopathy again as it may help in the long term. Try not to get stuck on loads of medication which in the end does not work. Gabapentin, amitriptyline have bad side effects. I wish I was on no medication as surely the pain could not be worse than it is now. The tablets backfire and are very difficult to get off. They both cause muscle tightening which makes the pain worse. My nerve damage absolutely flared with acupuncture so avoid this also be careful with physio. If you can do any only do gentle exercises, don't overdo it. A physio or chiropractor could make you much worse.

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