DESPERATE - PLEASE HELP - NERVE PAIN

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DESPERATE - PLEASE HELP - NERVE PAIN

Postby jinty1968 » Sat Jan 12, 2013 11:58 am

I had a TAH/BSO (total abdominal hysterectomy and Bilateral Salpingo Oophorectomy (where they take ovaries, fallopian tubes and cervix)) just over 9 years ago, since the operation I had twinges in my right side, especially when I coughed or sneezed and then it was like a stabbing pain and I'd double over, I have said to a few Drs over the years but they just kept saying 'nerve damage' and to be honest I wasn't that worried about it as it was only every now and then. Last January (2012) I fell down stairs on my bottom and hurt my coccyx but that healed and stopped being sore within a few months.

Since November 2012 I have had more and more severe pains in my right side and was hospitalised twice for it, the first time the Drs thought it could be kidney stones (as I had traces of blood in my urine) or my appendix and the 2nd time the Drs said I was constipated. The pain kept getting worse but only on my right side so I was referred for a colonoscopy and to the pain clinic, the colonoscopy came back clear.

The pain clinic Dr said he thought I had Ilioinguinal and Genitofemoral nerve pain, we tried pain killers (tramadol) and they didn’t work and then he did a nerve block on my stomach on the right side (which was agony, I was crying and begging my husband to tell him to stop) That gave me pain relief for 1and a half days and I actually thought, yes this has worked but then on the 3rd day I got up and the pain was there again and in fact it got worse and was now also in my right groin area.

The Dr at the pain clinic then suggested he do a nerve block and pulse radio frequency into my spine (T12, L1 and L2) where the nerve roots were and that there was only a 60% chance of it working but I thought 60% that’s more than half and as the only alternative was just to mess around with pain medication until it gave me satisfactory results, I agreed...anything to get rid of this pain.

I had that on the 2nd November 2011, the pain has gradually gotten worse and worse, I am now in total agony (lower right back, outside right left, inside right leg and down the right side of my labia). I am currently taking 50mg morphine (MST Continus) tablets a day (25mg in the morning and again at night) as well as Oramorph (oral morphine) to help ease the pain), it doesn't really do much except maybe take the edge off). I am also on anti-sickness tablets (Stemetil 5mg, 3 times a day) because of the morphine and Gabapentin 100mg 3 times a day to supposedly help relieve the pain. I also am on Epillim Chrono 300mg twice a day due to migraines, 60mg Duloxotine a day due to depression and 2 Amitriptyline 10mg at night to help me sleep.
I have now been signed off work for 3 months (since November 2011) and I have tried to go back twice but cannot sit properly at a desk for any length of time without the pain getting severe (I am a secretary/PA).
I am now at the stage where I daren’t leave the house because of the pain because if I walk for longer than a few minutes the pain just gets worse and worse and becomes unbearable.

I am now due back to the pain clinic on 25th January (I had to ask for an earlier appointment as the pain is now unbearable) but the last time I saw the Dr there he said it would be pain management with pills if the pulse radio frequency didn’t work, I am now terrified as I cannot live the rest of my life like this, in daily agony and taking numerous tablets a day as well as Oramorph...I just want and need the pain to go away, the Dr says it’s all probably down to nerve pain.

Someone please help me because I’m desperate and feel so isolated and alone, my sister who suffers from arthritis just says you have to get on with it, trouble is I don't have good and bad days. Just all bad days where I am in tears most of the time.
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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby Flash » Sat Jan 12, 2013 6:33 pm

Jinty, sorry I can't give you any helpful advise, I just had to aknowledge your post and let you know I am thinking of you.

The constant pain you are in must be debilitating for you and I feel for you right now. I hope so much that someone else can come on with some helpful hints, maybe someone who has experienced similar and can understand more fully.

Until then, just keep coming on and having a rant if need be. My thoughts are with you. Take care Hun, Sue. XX
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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby denys » Sat Jan 12, 2013 7:38 pm

Oh Jinty so sorry to hear how desperate you are, nerve pain is horrible like a nagging tooth ache but worse I really feel for you and wish I had a magic wand to help you sending you some gentle :hugs: :hugs: :hugs: :hugs: :hugs: and I hope the pain clinic can sort out some relief for you soon
Denys

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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby shazq » Sat Jan 12, 2013 8:18 pm

:welcome: Jinty
Sorry to hear about everything you have been through :hugs: :hugs: :hugs: :flowers:
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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby jinty1968 » Sat Jan 12, 2013 8:34 pm

thanks for your replies guys, I'm a bit worried about the pain clinic because I know he is going to say drug management but I don't want to keep messing around with lots of medication to find something suitable, I am fed up with amount of tablets I am taking at the minute, and its not doing any good except take the edge off. I crave to speak to people who have gone through this and are on the other side cos I'm scared I am not going to reach the other side.

Sorry for my reply being so negative, its just I've had another horrible pain day yet again and am fed up sitting/ lying moving about the living room and of my own four walls.

Thanks again though, nice to know people care enough to respond. xxx#
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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby FluppyPuffy » Sat Jan 12, 2013 9:18 pm

I'm sorry to hear what you're going thru Jinty, pain like you've described can be soul destroying :grouphug: :grouphug: I wish I had a magic wand to make things better for you :( :(

With chronic pain conditions, because so little is known about them, the best we can hope for at the moment is managing it. To do this, we need to find a suitable cocktail of things to try and make us a comfortable as possible. Unfortunately, for most of us, it involves a fair bit of time, trial and error to try and find the right ingredients, and quite often, what may help one may not do so for another :cry: :cry: :cry: :cry:

None of us wanted to have to mess around with different meds to try and find what could help us, unfortunately it is pretty much what we have to do so we can have at least a little easing in things. And to even achieve this slight easing, we need a fair number of different things in the mix, meaning we end up taking enough pills and things to make us rattle.

As much as we would love to have just a few things to take, until research starts to answer some of those unknown causes and reasons, we will still be on our quests to try and find the way thru to the other side.

Whilst I know this isn't the helpful reply you are desperate for, I hope that at least it is an honest one. This is how things are for most us at the moment, and until we start hearing that research and trials are making definite steps forward, all we can do is carry on trying to find the things that will help us.
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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby jinty1968 » Sat Jan 12, 2013 9:41 pm

Thanks fluppy puppy

All I want is peoples honest and at least I know most of you have been through similar, I didn't realise just how many people give you ideas that 'they' think is good like

work through the pain
maybe you should excercise more
have you tried hypnotheraoy
have you tried acupunture
why don't you try this or that

and the list goes on, I don't want a magic cure, its just I am now 45 and been in my ideal job (secretary) for the past two years and for the last 4 months of that I have been signed off sick and I am scared in case I lose my job because I am not capable for sitting that amount time
I can feel my depression getting worse and worse and don't see any light at the end of the tunnel, I don't even need the pain to totally go, just to go enough that I can sit and move around a bit, keep my job and have a little independence but I fear this may not happen.

Its nice just to go on to people who understand what I am going there and where I am coming from, my good friend and neighbour who has fibro has suggested that maybe I have this also but I don't think / hope i have this.

thank you again everyone for all the replies because even though my last post was so negative it was nice to vent and talk to people who understand...think this site may be my lifeline and sanity for the forseeable future

Jinty
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Re: DESPERATE - PLEASE HELP - NERVE PAIN

Postby denys » Sat Jan 12, 2013 9:53 pm

I have a friend who went through an operation and ended up with very bad severe nerve pain n a similar place to yours, she is in a desk job and has to sit for longish periods, she found a rubber ring helped at first until she got her meds sorted to deal with things through the pain clinic :dunno: :dunno:
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