Badges (1)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (26)

Mon, Nov 11 5:22pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

Gabapetine is a prescription. your Dr should be able to write a script. Cost will vary depending on your insurance/copay/etc. Cortisone usually helps with Arthrytis pain but IMO, does nothing for nerve pain. Actually that's one of the biggest problems for people who have a type of PN that has lots of pain as the symptom. Nerve pain is very hard to control. there are lots of things to try and you may find something that really help you. Everyone is different, your doc should help you try various main control methods to find what is effective and fits your budget. The trick is finding something that controls the pain but doesn't turn you into a zombie. Good luck, God bless!

Fri, Nov 1 7:26am · Anyone here dealing with peripheral neuropathy? in Neuropathy

Very sorry to hear about your disease. Unfortunately your story is not unique among this group. Nerve pain is THE most difficult pain to control. I suggest you ask your Pain Specialist (who should be a licensed Anesthesiologist) as they will have access and experience with the methods that work the best. As far as TENS, Lidocane, etc, try to find a specialist who will set up trials for these methods. I had a Tens but it did not help. I am allergic to Lidocaine, and have tried everything else. It sounds like your doc is working with you to find the best combinations of timing and dosage for Gabatpentin and Lyrica. Lyrica is the only thing that helps me although Percocet and a spinal infusion of Dilaudid (both narcotics) seem to control it better than anything else. I don't like being groggy either but so far the Percocet or DIlaudid has not caused that side effect. But everyone is different. The pain is reduced but i still have days when I lie in bed and scream in pain. But they are not as often as they once were. It sounds like you are doing what you can. The nervous system is like a chain of sausages strung together with pain signals traveling along the chains/sausages. My particular PN is called Demylinating PN. The little sausages are covered with a film called Mylin. My mylin is dissolving and causing the signals to still travel, but run into traffic jams, road blocks and mudslides – all of which disrupt the flow of the nervous signals and change the way the brain interprets the signal it receives. I sometimes have pain that I cannot find any words to accurately describe the pain. It is so frustrating to look at my legs or feet and see that they look perfectly normal, but the pain makes it seem like they should be mangled to have all that pain generated!

Thu, Oct 31 7:56am · What kind of mobility can I expect with an antibiotic spacer in my hip in Joint Replacements

You said you "have a ludicrous amount of anxiety/depression". My observations during the 20+ years I have had PN, is that mood is very responsible for increases in pain levels. From frustration (for any reason) to stress, and any other types of mood, can all increase pain levels dramatically. There have been times when I had reduced levels of stress and had reduced levels of pain as well. When the stress comes back, the pain comes back. You also said " I'm as lost and misguided here " indicates you need to find some help in managing your life in general. Also, please don't apologize when telling your story and don't feel you need to take your story down; your experiences are as important as anyone else's here and we want to hear about your experiences so we can try to help you. We are here to help you deal with your PN by providing insight into our combined experiences in how we all deal with this disease on a daily basis. Regarding the THR you would like. I am sorry, but I don't know what a THR is, but if you feel it will help you control your pain and PN, find a different Dr. There are a huge number of medical professionals out there and each one has a different way of treating each problem they try to help patients deal with. If needed, go to a different Doc, try a specialist such as a Anesthesiologist. Also find a doc to talk to about your Anxiety/depression and your feeling of feeling lost and misguided. Your nervous system is complex and a part of every part of your body. Finally, some people have found help in their church. Letting God into your life can have dramatic results for some people. Please maintain participation in this group (or another like it if you prefer) but don't bottle everything up and please know we're all in this together and will help you as much as possible. Keep us informed about your status.

Tue, Oct 29 9:20am · Burning Feet syndrome in Neuropathy

Yes, when I was diagnosed with Demylinating Polyneuropathy, I was having all kinds of pain. Still do but not as constantly as it was back them (97 iirc). Lyrica was a God send for me. None of the things they tried before helped. I also have a implanted pump which has Dilaudid and Bupivicaine which constantly provides medication. (Tried a TENS device but it didn't help) I have tried to reduce this but the pain seems to go up when I do. My pain is so intermittent it is hard to be sure something is helping. When the burning gets bad or stabbing pain starts I take Percocet which seems to help. I am taking 200mg Lyrica 3X/day and this is the max allowed although they have not published any side effects when people take higher doses. I read where one patient took 8000mg by accident (!!) without side effects. Of course a single high dose may provide different results than when taking higher doses for extended periods. So I take them as prescribed.
The "standing in acid" description is pretty close to what I feel occasionally. Thankfully it doesn't happen all the time. Today my right foot is burning but not too bad at the moment.

Thu, Oct 24 3:32pm · Burning Feet syndrome in Neuropathy

It sounds like Peripheral Neuropathy. That is how mine started. I had Intense burning that felt like I was standing in acid! I tried all the medications with very little help until a Rx called Lyrica was developed. You should consider seeing a Neurologist who will give a proper diagnosis. There are numerous variations of Neuropathy and most are treated similarly, but your Neurologist will be able to tell you which treatment will be best for you.

Good luck!

Wed, Oct 23 9:56pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

I was diagnosed with Chronic Demylinating Ideopathic Polyneuropathy (non-diabetic) in the mid-late 90s. Went from a feeling of having balled up tissue under my foot to so many kinds of pain I still can't find the words to describe them. Stabbing pains were the worst and my Neurologist sent me to a Anestheoligist to get stronger meds. I eventually learned how to manage each kind as well as possible. Stabbing pain required Percocet be taken as soon as the stabbing starts, otherwise nothing stops it. The intense burning is sometimes helped by walking, pressure, cold, and the Percocet also helped. At the worst times, I went without much sleep for weeks at a time – often only getting 10-15 minutes between the spikes of pain. It seems to be less severe for the time-being. I pray it stays like this for the foreseeable future. I was completely unprepared to learn there were no magic pills that would cure this disease and all we could do was manage the symptoms.

Wed, Oct 23 9:08pm · Leg length difference after TKR! in Joint Replacements

Thanks! Great idea/ I will look into that. Thanks again!

Fri, Jul 12 3:48pm · Leg length difference after TKR! in Joint Replacements

Thank you for those kind comments, It's True, it would be drastic and I will definitely get another opinion before I have any amputation.
The problem is the Neuropathy has damaged my bones (I'm told) which is why they were trimmed during each TKR. IMO, after 4 failed TKR's (still on #4 but it's time is limited) I think the surgeon's have given up on the idea of getting a TKR to work for me. Now that my Tibia is short, my present surgeon suggests he replace my (good) hip and run a rod between my hip and ankle. I will be unable to bend my leg at all but we avoid amputation. Lots to consider. I'm not seriously considering that option though. It would require probably 2 major surgeries which I don't want my wife to suffer through or me. ,
As Far As the way the docs act after the TKR, in my case I saw that. It was very subtle and may have been my imagination but I sensed a change.
As things are now I'll probably keep getting around on my walker trying to get my legs stronger and hopefully things will improve.
Thanks again,