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Author Topic: desperately need pain relief for peripheral neuropathy  (Read 6448 times)

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Offline kateplate

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desperately need pain relief for peripheral neuropathy
« on: November 25, 2007, 10:30:47 AM »
Hi,

I damaged my left knee in May '07 which resulted in a partial medial meniscectomy in Sep't that was totally successful. But at the time of injury, and ever since, I have had increasing problems with nerve pain that is now unbearable. I've tried amitryptiline and tramadol, and have recently been prescribed pregabalin - it's pretty hard going. I was seen in pain clinic this week and offered nerve blocks for the perineal and tibial nerves in my lower leg, and I went ahead and had this done a couple of days ago. Now after 2 days pain free I can feel all of my original symptoms returning. The allodynia is horrendous and I can't imagine going on with this for much longer. I have a busy life, 3 kids, job etc etc, and it's all falling apart for me because of this pain.

Any ideas on whether I should get the nerve blocks done again?? The relief was instant, even if short lived, and I know that I was only given a small dose of steroid so I assume they can 'up' this until they get the right dose?

Please reply if you can offer any help or have suffered a similar situation which is now resolved. Thanks
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline Nettan

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Re: desperately need pain relief for peripheral neuropathy
« Reply #1 on: November 25, 2007, 11:20:54 AM »
Often nervblocks after success is given in a serie. And as you reacted positive on these ones even if they didn't last that long, there is a big possibility that they can help for longterm and give you painrelief.
Have a open discussion with the painmanagemnet clinic and see what they can do for you. The good things is that you are in right hands.
I am dealing with nerv damage and RSD and have gone through most treatments, for me though no success. Though I live a pretty good life now as painlevels has gone down some through the years. If I can help you in any way or if you have questions, please let me know and I will try to help you.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #2 on: November 25, 2007, 11:41:01 AM »
Hi Nettan

We've spoken before! Great to know someone else is out there to advise and encourage. I know that these problems can be chronic and life changing, hope things are OK for you at present.

I will definitely express my views at pain clinic and ask about a series of nerve blocks. If it you think the effects will stay longer each time then that is brilliant, and so encouraging. I'm taking the meds as prescribed to try and give some ongoing pain relief in the meantime.

How often would you think they could do a nerve block?? I hated it first time round as the hypersensitivity over the tibial nerve made touch unbearable, but the doc is so kind and patient and I think I could put up with it as an ongoing thing if the results are good.

Also - I'm now waiting for nerve conduction studies. Have you had these??

Bye
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline TIBBAR

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Re: desperately need pain relief for peripheral neuropathy
« Reply #3 on: November 25, 2007, 12:43:07 PM »
KATE
I HAVE HAD THIS ON THE BOTTOMS OF MY FEET FOR ABOUT 8 YEARS. ( SEE SIGGI ) IT STARTED IN MY L. FOOT AFTER A ANKLE RECON. AND NOW IS IN MY R ONE ALSO. FOR A FEW YEARS I TRIED NEURONTIN. IT HELPED SOME BUT AT SUCH A HIGH DOSE THAT I COULD NOT FUNCTION IN LIFE. I HAVE NOW BEEN TO A NEUROLOGIST.HE WAS LOOKING FOR A CAUSE. HE DID A BIZILLION BLOOD TESTS AND NERVE CONDUCTION TEST. SADLY HE COULDN'T FIND A ROOT CAUSE. SO NOW I AM TRYING LYRICA AT A MEDIUM DOSAGE. SOMETIMES IT WORKS AND SOME DAYS I CAN'T HAVE ANYTHING TOUCH MY FEET. CAN'T WEAR SHOES OR SOCKS. CAN'T WALK ON THEM SOME DAYS AT ALL. WE WILL BE UPPING THE DOSAGE AGAIN TO SEE HOW IF A HIGHER DOSAGE HELPS. I HAVE NOT BEEN TO PAIN MANAGEMENT YET. I WAS HOPING THE NS COULD FIND A CAUSE. WHAT ARE YOU TAKING NOW FOR THE PAIN AND IS IT HELPING AT ALL? YOU ARE THE FIRST ONE I HAVE SEEN HERE WHO HAS ASKED ABOUT PERIPHERAL NEUROPATHY AS SUCH. PLEASE LET US KNOW HOW THINGS GO WITH YOU AND WHAT YOU FIND THAT HELPS. I DON'T KNOW IF A NERVE BLOCK WOULD WORK FOR FEET, BUT IT MIGHT BE A THING TO ASK ABOUT OF MY NS. SOME DAYS I WOULD BE OPEN TO TRY ANYTHING.              CARO.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #4 on: November 25, 2007, 01:46:32 PM »
Hi Caro,

So sorry for you. I'm struggling after 6 months so I guess that 8 yrs is horrendous. I've actually been 'tackled' really quickly. Got doc referral 2 weeks ago to pain management clinic and on that basis I have already been seen and treated. At least being in 'the system' in the UK helps.

My symptoms have arisen from 2 seperate neuropathies which started at the same time during my injury in May (which was a very minor accident, ironically!) The perineal nerve runs down the outside of the leg, and the tibial nerve leading to the sural nerve starts in the calf and ends up in the bottom of the foot, which sounds exactly like your symptoms. My pain is confined to the lower leg, and also the foot - and I get intense symptoms in my 3 bigger toes and coming out of the sole of my foot in a patch the size of penny (dollar!!) The nerve block took that pain away immediately, and although it has now returned, and is getting worse as I type, the respite was brilliant and I slept through the night. I would definitely ask your doc to consider giving this a try. Nettan suggested that if a nerve block works once, even briefly, then there is hope! I think the docs just need to juggle doses and delivery to suit individual needs. I'm also taking Lyrica (diff name over here) and it works OK although tends to make me hyper before I can get to sleep. I don't enjoy the side effects and, like you, it tends to work sometimes and not others, but any relief is fab.

Let me know your thoughts, I'm happy to chat about this further. It's comforting to know that I'm not alone suffering this, although it's horrid for all of us that have to grin and bear it every day.

Kate
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline TIBBAR

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Re: desperately need pain relief for peripheral neuropathy
« Reply #5 on: November 25, 2007, 02:13:26 PM »
KATE
SORRY WE HAVE TO MEET LIKE THIS. I HAVE NO SYMPTOMS IN MY LEGS AT ALL YET. MY RIGHT TOE DOES ACT UP ALSO BUT NOT THE LEFT. I WAS SO HOPING FOR A CAUSE. AT LEAST IF YOU KNOW WHY YOU MIGHT PREVENT IS MOVING. SOME DAYS I CAN WALK ON THEM FOR A LONG TIME AND SOME DAYS CAN'T WALK ON THEM BUT A FEW MIN. THE WORST PROB. I FOUND IS NOT KNOWING WHEN THEY WILL BE GOOD AND WHEN BAD. CAN'T PLAN TOO MUCH WALKING ACTIVITIES IF YOU DON'T KNOW HOW YOUR FEET WILL REACT. WENT SHOPPING WITH A FRIEND THE OTHER DAY. FIRSTIME IN A LONG TIME. WE WERN'T OUT BUT AN HOUR OR SO AND I HAD TO STOP. PEOPLE JUST DON'T GET IT. SHE TRIED BUT I AM SURE SHE WANTED TO SHOP MORE. MY JOB IS SOME SIT DOWN AND A LITTLE WALKING. I CAN MANAGE THAT WELL. IF I HAVE TO I SLI MY SHOES OFF FOR A FEW MIN. LETS KEEP IN TOUCH . WANT TO KNOW HOW YOU GET ALONG. YOU DO SEEM TO HAVE IT WORSE. I DON'T HAVE A FAMILY TO TAKE CARE OF AND IT IS ON MY FEET ONLY. NO WHERE ELSE.   CARO.

Offline Nettan

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Re: desperately need pain relief for peripheral neuropathy
« Reply #6 on: November 25, 2007, 02:53:12 PM »
You definately should read up about the condition and learn as much as possible.
There is a lot of research going on with neurological pain. And there is definately hope for future. We just need to find treatment that works meanwhile.
Painmanagement clinic can have better resources then just a painmanegement doc. Also worth to know.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #7 on: November 25, 2007, 04:08:10 PM »
Hi Caro / Nettan,

Thanks so much to both of you for replying today. This is probably my lowest point ever. Was so desperate for this nerve block to work, and instead I'm sitting here with such pain in my leg and foot and amazing sensory disturbance. My leg feels so cold to touch, and the the sensation of ice is unbearable at present. I will certainly follow up everything and investigate further and keep you posted. A friend has suggested Western accupuncture (deals with pain at the site of origin) so may chase that up.

Hope your day is OK so far.  Kate
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline Nettan

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Re: desperately need pain relief for peripheral neuropathy
« Reply #8 on: November 25, 2007, 04:20:27 PM »
Kate, you have a diagnos of your pain ? I don't remember..can you fill me in.
RSD do that I can't use ice..and my leg is always cold.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #9 on: November 25, 2007, 06:22:23 PM »
Hi Nettan,

Diagnosis has varied depending on which doc I talk to. CRPS and RSD have been mentioned, but at present I am focusing on a diagnosis of peripheral neuropathy of the perineal and tibial nerves, with sural nerve involvement.  Ultimately I need treatment, not a label of my condition!! The ice feeling that I mentioned started after the nerve block so I hope it will settle soon. At present my foot feels cold to the touch and I am wearing lots of pairs of socks to try and reduce the cold feeling!

This is so awful. I am only 39 yrs old and I feel that my life has been taken away from me by this pain. How do people cope long term?? I hated the nerve block, but if it was offered again at this moment I would grab it with both hands.

Hope you're OK today, K
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline TIBBAR

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Re: desperately need pain relief for peripheral neuropathy
« Reply #10 on: November 25, 2007, 07:37:32 PM »
EITHER OF YOU TWO KNOW THE DIFFERENCE BETWEEN RSD AND NEUROPATHY? BOTH ARE NERVE RELATED SO ARE WE TALKING SEMANTICS HERE OR IS THERE A DIFFERENCE? MY FEET ARE COLD MOST OF THE TIME ALSO BUT SOMETIMES PUTTING SOCKS ON IS AS BAD A THE COLD. SO I HAVE A SOFT DOWN BLANKET THAT I LAY OVER MY FEET AT HOME AND THAT HELPS A LOT. OF  COURSE AT WORK I DO HAVE TO LEAVE MY SOCKS ON lol .   I USUALLY DESCRIBE IT TO PEOPLE AS MY FEET BEING COLD AND BURNING AT THE SAME TIME. I ALSO HAVE AN  ANKLE PROBLEM AND WEAR AN ARIZONA BRACE WHICH ADDS TO THE SOCKS AND SHOES TO BE HURRIEDLY TAKEN OFF AFTER WORK.  WOW THIS IS SO AWESOME TO TALK TO SOMEONE WHO KNOWS THE NEUROATHY. I DON'T KNOW ANY ONE ELSE WITH THIS.        CARO.

Offline Nettan

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Re: desperately need pain relief for peripheral neuropathy
« Reply #11 on: November 25, 2007, 07:50:41 PM »

http://en.wikipedia.org/wiki/Neuropathy
Neuropathy due to wikipedia.

http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome

RSD/ CRPS due to wikipedia.

Read and see, the are differences. But a lot of symptoms and treatment are close.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #12 on: November 25, 2007, 08:04:58 PM »
Hi again Caro,

As far as I am aware, RSD is the same as CRPs, and both imply hideous nerve pain with an idiopathic (unknown) cause. From what I have read I think we are all in this with differing symptoms and the mainstay of treatment revolves around findng a doc who can recognise and treat the worst problems to give some relief. I don't think there is a cure for this, but a good doc will identify his patients needs and work with them to offer respite. I never though I would be a 39 yr old mum who is hooked on heavy duty drugs and needs weekly hospital appointments to provide light at the end of the tunnel. I don't know how many of us suffer like this, and I really hope we are a minority, but it's great to hook up with someone else who can understand where I'm coming from and appreciates that we are struggling to stay afloat here. My heart sank when the nerve block wore off after 2days, but I have to stay positive and ask for the same treatment again in the hope that things improve. My partner is an NHS consultant and he had never heard of this condition, so that kind of sums up what we are up against.

The cold feet thing is probably not as debilitating for me as for you. I think my issues are perceived, not actual, but the cold feeling is horrid. I have also suffered symptoms such as hot water pouring down the back of my leg, and an inability to tolerate touch on my leg (allodynia). This is so awful at times when all I want to do is sit with my young family and cuddle them.

I will let you know as soon as I have further treatment or discussion, please advise me too. Maybe between us, and many medical minds, we can sort this out . K
Dec '05 RK plm; Dec '06 RK plm&pmm; Sept '07 LK pmm. Jan '09 LK pmm and synovial joint repair / removal of fat pad.
March '09 insertion of spinal cord stimulator for permanent nerve damage in L leg.

Offline Nettan

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Re: desperately need pain relief for peripheral neuropathy
« Reply #13 on: November 25, 2007, 08:14:16 PM »
Kate, symptoms you mention is some of those I have too. I am diagnosed with a nerve damage and RSD/CRPS.
How to cope..yeah that is the biggest issue. For some years that was not possible. But today that is better.
Somehow pain has been changing off and on and the pain when I was as worst with 9-10 on the VAS scale is now around 6-7 24/7.
Can sound rough, but for me who doesn't know anything else for 10 years back, that is my daily life.
I have worse days when snow is in the air or the temperatures is between 0-7 C.

The mainkey when you have problems like this is finding a good doc with knowledge that you trust, be patient, make surrounding aware of the condition, live with the condition not against that. If you do that and follow your own body life isn't that bad.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline TIBBAR

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Re: desperately need pain relief for peripheral neuropathy
« Reply #14 on: November 25, 2007, 09:13:32 PM »
THANKS NETTAN....... OK, FOR ME IT SOUNDS LIKE WHAT THE NS SAYS NEUROPATHY. I DO NOT HAVE SWELLING, SKIN CHANGES OR PAIN TO THE TOUCH. EVEN ON DAYS THEY ARE HURTING ME THE MOST SOMEONE CAN TOUCH MY FEET W/O ME HAVING EXTRA PAIN. ACTUALLY IT IS ALMOST LIKE BEING NUMB. BEEN TESTED FOR DIABETIES WHICH ALSO PRODUCES THE NUMB FEELING. I SAW MY OS FOR MY KNEES 3 WEEKS AGO AND HE PALPATED MY FEET. HE WAS JUST A LITTLE CONCERNED ABOUT THE BLOOD FLOW IN MY BETTER LEFT FOOT. SO NOW WHAT DO I DO. DITCH THE NS AND SEE IF MY INSURANCE WILL PAY FOR A PAINMANAGEMENT CLINIC APOINTMENT? WOW THIS HAS OPENED UP A WHOLE CAN OF WORMS FOR ME. I JUST THOUGHT I HAD TO LIVE WITH IT AND TRY THE LYRICA FOR A WHILE.  MY PAIN IS 24/7 BUT VARIES. RIGHT NOW W/O SOCKS ON IT IS ABOUT A 3. IT CAN GET PRETTY MUCH HIGHER IF I HAVE TO WALK AWHILE. THO READING IT DOES SEEM THAT THE RSD PAIN IS WORSE AS IT INVOLVES MORE AREA AND PAINFUL TO THE TOUCH. LOT TO THINK ABOUT NOW. WHAT IS MY NEXT STEP? I JUST HAD SURGERY LAST SUNDAY FOR RETINAL DETACHMENT ( HENSE THE CAPS TO SEE ) AND THAT SEEMS TO BE ON THE MEND. LAST SUNDAY I HAD NO VISION IN MY RIGHT EYE. AFTER I GET BACK ON MY FEET FROM THAT I WILL SE WHAT IS NEXT FOR ME. THANKS KATE FOR POSTING THE WORDS NEUROATHY I WOULD NEVER HAVE PERSUED THIS PAST MY NS. JUST THINKING I HAD TO LIVE WITH WHAT THE MEDS I NOW HAVE GIVEN ME.        CARO.