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Author Topic: desperately need pain relief for peripheral neuropathy  (Read 6451 times)

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Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #15 on: November 26, 2007, 11:08:59 AM »
Caro,

Really hope you follow this up and get sorted. I know that peripheral neuropathy can be linked to several causes including lupus, RA, diabetes and alcohol. In my case they think the v minor trauma to my knee cartilage was the catalyst, as the onset of the neuralgia was from that point onwards. I can't believe you have been left to 'put up and shut up'. I would imagine that US healthcare was far better than our NHS in the UK, but I've found that once you get put into the right hands (pain clinic run by an anaesthatist) then stuff starts to happen in a more positive way.
 How do you cope with the Lyrica?? I hate taking it as I feel hungover on it, but I guess I should play around with timing to see if I can get it right. Sad to say the 2 nerve blocks have now completely worn off and the pain is hideous in the  sole of my foot. This pain is linked specifically to the tibial nerve. Have you been able to pinpoint your pain, and if so have they diagnosed which nerve is inflamed?

If anyone out there can advise on repeat nerve blocks and if this is the way forward then it would be good to discuss.
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 #16 on: November 26, 2007, 03:23:47 PM »
HI KATE
We really don't know what the exact cause is. My NS did many blood tests and did rule out diabetes and i don't drink so we know not that. I don't know if he tested for Lupus? MY feet have been bad since childhood. In 97 I had an ankle recon. on the left and that is when the that side started. The right I am walking bone on bone because all tendons are shot and there is nothing holding that ankle up. Thus the brace. OS wants to do ankle fusion but I want to explore other things first and get a second opinion. That can't be done till my knees are sorted out. The fusion ( if done) would mean 3 mo. in a cast and NWB. My knees could not stand that yet. I can't get the knee thing sorted till I get back on my feet from this latest bump in the road my retinal detachment. All in due time i guess :P I am taking 75mg of Lyrica in the morning and 75mg at night. I don't seem to be having any side effects now, but the dosage will have to be upped to see if I can get anymore relief. My insurance fought paying for the Lyrica and my NS fought them back. We won.
To tell you the truth I never thought of a pain clinic. I just thought that what I had was just something that wasn't treatable  and I had to live with the meds. I was given. I now have a whole new thought process going on.
MY pain is just on the sole of my feet and the ball being the worst. I really have the most pain when walking after about 10 min. My OS 's office just called this morning and said they have me scheduled for a Doppler Articular of the lower extremities for the 10 of Dec. So now it is a wait and see what that turns up. Dec. 17th I see the OS with the results.
I do believe your pain is in a much larger area than mine? You seem to have some of the RSD symptoms also. As painful to the touch. Blessedly except for the shoes and sock thing I can touch my feet and they do not hurt. Mine start hurting after they have been confined in shoes and walked on some. They do hurt 24/7 but that pain is low. Yours seem to be more aggressive. I feel so bad for you. I am almost 58 and no family to keep up with. You are young with a family I just don't know how you cope. What kind of work do you do? I do hope that you find your answer somewhere. Weather in meds or the nerve block . Was the nerve block Painful and where was the block inserted?  God Seed to you and we will see who comes up with the answer ??? ???             CARO.

Offline dm

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Re: desperately need pain relief for peripheral neuropathy
« Reply #17 on: November 27, 2007, 12:41:36 AM »
Hi kate,
I don't see anyone mention them here, but have you tried local anesthetic patches for the neuropathy, or at least for the hypersensitivity aspect? I use Lidoderm patches, which can be worn for 12 hrs at a stretch, for my knee pain. I have permanent damage to my knee, and have chronic pain issues, but thankfully no neuropathy. I'm looking at arthroscopy #5 here shortly, I think, since I hurt my knee again 6 wks ago. I made the mistake of not taking any painkillers for 24 hrs,trying to see if I could do without them, and it got so bad by the time I got home this evening that I was nauseous and wanted to puke, as well as amputate my leg. I had to force myself to eat and take the painkillers, and hope I wouldn't puke 'em up before they kicked in. Not a fun thing, let me tell you.

But, back to my comment.... the Lidoderm might be worth a shot, I don't know if the nerves that cause your problem are near the surface, I forget where the tibial nerve is, but if they're not way deep, then the patch may help turn them down a bit. If nothing else, putting a patch on where they're gonna do your blocks a few hours before the appt may kill the hypersensitivity enough to allow them to do a more extensive block for you.

I've heard of one worst-case solution for nerve problems... kill the nerve with radio frequency treatment. Definitely not something you can reverse, so it would definitely be a last ditch solution. It's something I've never researched, but remember hearing of someplace, but of course can't recall where.

I like the Lidoderm patches as they don't mess you up or have wierd side effects like some of the meds out there. Can't hurt to ask to try them.
multiple arthroscopies 2/00,3/01,6/01,1/03, 12/07,10/10. chondromalacia, severe medial joint space narrowing following 3 partial menisectomies, chronic pain problems, kneecap problems, OCD lesion, failed mfx.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #18 on: November 27, 2007, 06:16:09 PM »
Wow...it's amazing to be getting such guidance and advice from this. I thought my problem would be dismissed as freakish!!

Caro - I really hope your scan shows something positive, and I'm glad for you that the Lyrica helps and is manageable. I took a massive dose of tramadol (Zydol) last night to cut the pain but I just seemed to feel things on a different level. Then I felt hungover all day. The region of my pain is all down the outside of my lower left leg and into the sole of my foot and 3 bigger toes. Ouch. But I would imagine that the ball of your foot is awful as it takes all the pressure when you walk.

DM - I've never heard of Lidoderm patches - but I'm pretty new to this pain clinic stuff. It would be fantastic if they could be used before another nerve block. I was in agony just from the cold gel of the ultrasound. The tibial nerve runs down through the calf and into the sole of the foot and toes, and I think it is pretty superficial, but I'm not sure. I am really hopeful that they will do a bigger block for me to give me longer lasting relief. 48hrs was fab, but only 48hrs! As for arthroscopy x5, poor you. I'm on number 3 but have made a full recovery as far as both knee joints are concerned. At least I know my symptoms can be alleviated without surgery.

As for the permanent solution - I've heard of this method too. It's also quite commmon in the UK to cut peripheral nerves and it can work really well. I'm due nerve conductivity tests as soon as they can arrange, and if the damage is inside the nerve, not around it, then I will look at discussing this option. I know how you feel when pain just wants to make you throw up and be left alone. my temper with the kids has been awful this week, and I also think this is 1 side effect of the lyrica.

As for RSD (CRPS) I think the jury is still out. There is no obvious evidence of skin change, but other issues fit. Either way, it's the treatment that matters, not the label / diagnosis.

Hope you both keep posting and let me know how things go. I'm sure that if we can share experiences and treatment advice then there may be hope for us yet! 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 dm

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Re: desperately need pain relief for peripheral neuropathy
« Reply #19 on: November 28, 2007, 03:20:14 AM »
Kate,
I'm guessing that you don't live in the US, given the drug names I've seen you mention, and the "terminology" you use. That may be why you haven't heard of the Lidoderm patches. I don't know if they're available outside the US. Another option to try might be to ask for some lidocaine 5% gel, and apply that an hour or so before they're gonna do a block, and see if that kills sensitivity enough that they can do a more extensive block. Sometimes being from different countries is a help, other times it can be a pain, if someone can get something one place that helps them, yet someone in a similar position can't get it elsewhere. Oh well, not much one can do aside from try to come up with an answer from what one has access to.

Ironically, I've not been to a pain clinic, I learned of the patches on a message board, and asked my OS to let me give them a try. Then I later found a study that was done comparing Lidoderm to Celebrex in terms of relief of pain from osteoarthritis. The people using the patch got as good if not better results than those taking Celebrex, without the heart risks associated with cox-2 inhibitors like celebrex, mobic etc. My OS has been giving me painkillers as needed thankfully. I've been getting small prescriptions a couple times a year as my "last resort" pain management option, but since my knee got damaged again 6 wks ago, I'm on my third rx of painkillers, at 4-6tabs a day. I hate taking so many, but found out what happens if I stop taking them.... the pain is unreal.

I get my mri tomorrow, hopefully it'll show why my knee is screaming at me, and then they can fix me up so I can get back to the things I like to do.
multiple arthroscopies 2/00,3/01,6/01,1/03, 12/07,10/10. chondromalacia, severe medial joint space narrowing following 3 partial menisectomies, chronic pain problems, kneecap problems, OCD lesion, failed mfx.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #20 on: November 28, 2007, 12:38:01 PM »
DM,

You're right. There is a huge difference in the medication and care available in different countries. I think it also sometimes depends on what is licensed for different use by different governments. What a minefield.

I'm gonna take a look at all of these local anasthetic options and ask my pain clinic consultant if it would help. I'm sitting here now and I can hardly bear to have clothes touching the skin on my lower leg. It's like hideous sunburn that somebody is tipping icy water on to.

Hope that MRI scan gives you hope, and go steady on the pain relief!
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 dm

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Re: desperately need pain relief for peripheral neuropathy
« Reply #21 on: December 01, 2007, 04:43:18 PM »
Just a quick reply for you on my situation... mri shows meniscal tear medially AGAIN  :o and free floating hunk of meniscus in there. So it's back to surgery for #5. I asked about checking out the bone ends and filing down the sharp edges while he's in there, if it's gonna need it in a couple years anyway, might as well do it now while he's in there is my thought on the matter... I saw my recent xrays and the bone ends are growing sharper and closer together, the joint space right at the edge is narrowing more than anywhere else, so I think that filing them back now will buy me more time before they have to do something like that again. Waiting to see what they have to say about it, since I didn't remember to ask the dr the couple minutes he was with me. Grr... I hate it when I mean to ask something and forget to....
multiple arthroscopies 2/00,3/01,6/01,1/03, 12/07,10/10. chondromalacia, severe medial joint space narrowing following 3 partial menisectomies, chronic pain problems, kneecap problems, OCD lesion, failed mfx.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #22 on: December 03, 2007, 11:45:55 AM »
hey....always take a list of questions with you!!!

Sorry your MRI shows yet more trouble. If I was in your situation then I'd ask them to be as aggressive as possible while in the joint to try and prevent the need for surgery again too soon. I did this last yr on my RK (Dec '06 surgery) and the surgeon happily tidied up everything he could. No probs since. Go for it. Keep taking that pain relief. 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 #23 on: December 03, 2007, 01:54:44 PM »
HI Kate
I see things are still not any better for you. I am so sorry!!  Have you a date for your nerve conduction tests yet?? I pray for you that you get some answers. At least you will know how to proceed. Tramadol does nothing for me at all. My Lyrica does take the edge off my pain but I need to get back to my Doc and have the dosage upped. In the last 2 weeks I had 2 unexpected eye surgeries which have kept me from pursuing other options and having my scan.. I think if after the new year I will see about a pain clinic. I still do believe that my knee problems and feet problems are related. Both my NS and OS say no, but it doesn't hurt to pursue other opinions. it is kind of different for me. My feet will start screaming at me when walking with shoes on but at home w/o anything on my feet the pain is not as bad. They still hurt all the time and sometimes wake me but with taking the Lyrica before bed I seem to not wake up in pain as much.
Please keep me informed. I really want to see a solution for you. Your pain is in a very much larger area than mine. I hope your children will be able to understand how your pain effect your moods. Have you sat them down and explained to them about your pain?
Will be praying for a solution for both of us and some kind of answers after you test.                 love          CARO.

Offline kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #24 on: December 03, 2007, 02:24:03 PM »
Hi Caro,

Hope your other eye problems are resolving now...I see you're not in capitals anymore!!

I have EEG and EMG tests next Weds (12th). Pretty scared because I know that if the damage is identified within the nerve then I am potentially looking at major illness elsewhere in my system.

My children are great. The eldest (15) knows how scared I am and talks with me. The younger 2 are 4yrs and 2yrs so simply know NOT TO TOUCH MUMMY'S LEG! My husband has been fantastic in all of this. I sleep very little at present and he cuddles me through the night when things hurt most.

I don't think we can compare situations or severity of symptoms. We are all suffering different pain and problems, and I think it's important to take a confident approach to the medical profession in order to work with them, give them the information that they need, and get help for ourselves.

Hope things are OK on Dec 10th for you. Kate x
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 kateplate

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Re: desperately need pain relief for peripheral neuropathy
« Reply #25 on: December 29, 2007, 09:40:07 PM »
UPDATE...

Thanks to you all for your support and advice. Latest news is that the EEG / EMG tests are all normal and I am now waiting for referral back to a new OS. The overall picture is that I have some kind of mechanical problem linked to my accident in May '07, and this will ultimately result in further surgery.  I'm pretty nervous about this, as feedback from other people on this site implies heavy surgery with big recovery times that I know will be hard going with a job and 3 small children.

In the meantime, my pain management doc has sorted things. I now take pregabilin (lyrica 75mg) twice daily, and I'm also using a buprenorphine patches (strength 10). This combination is pretty horrific to tolerate to begin with, but I really feel the benefits now and will stick with it.

To all of you out there struggling to control pain and juggle life.... there IS hope and please stick with it. It's taken me a while, but I currently feel pretty painfree and positive about future prospects.

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.















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