... Nobody I know has a clue?
Peripheral Neuropathy - Hi, I am new here and I guess I didn't know so many people were like me.?
Added 16 May 2013:
Thanks for the comments and support, its nice to know someone knows how you feel. I am really curious to know if anyone has tried all the medicines with no success, and has had their doctor recommend other treatments like neurostimulators or laser therapy? Mine is trying to talk me into one of these but I would like to know first if anyone has done this with any success?
We have all been through the, "Well, you look OK, so you can't be too sick!" That is why most of us have joined this support group --- for the support and advice from others who are living with and totally understand our pain. You will find that we have some really smart cookies on this site; some medical professionals, but mostly people like you and me who are living with PN. Welcome to DC, smileyzz. I hope to see you on the site often.
Hello Smiley. It is true that we may not look ill and people don't honestly understand we are dealing with hidden disease or ailment. On the other hand it is not so bad, since people treat us as normal. It gets more difficult when others including family don't get it. People want happy news not sad. Good listeners are hard to find. This site is a very good place to learn and discuss or situations. It is also very good to receive help and understanding and give back from our own knowledge. It helps us keep perspective and not fall into the self pity trap. There are even some laughs here.
Feel free to ask questions, tell your story and get some support. I am sure there is a place for you here. PN is one of the items on my list of crummy disease. Gabapentin gets rid of it for me, but the confusion from the med is my side effect. It sure worked well for the shingles I am recovering from. PN was negligible then too. I decided I would rather think clearly. Now I sting and burn. Sigh. The nice part was others felt that way as well. It helps to know. Happy to talk with you anytime, Karen
Smileyzz - welcome. I just started this site last week and I already feel like a little weight has been lifted off my shoulders. It's nice to talk/type to people that actually know and understand your situation. I work in an office with two particular co-workers who treat me as though I'm faking my pain and just trying to get sympathy - so it's heaven to go some place where there are no judgements!
I have tried all of the usual meds for PN, and cannot take them. I have not used a TENS unit, because I have a pacemaker --- bad combo. I am now trying Mobic and Flexeril. So far, no change other than the Mobic is irritating my stomach. I'm sure someone else on this site has or is using the TENS unit or laser treatments. Best of luck in your search for a treatment that works.
Hi again smileyzz. I have a spinal cord stimulator and to make a long story short, the trial went great!!! I could stand up straight, am bent over now, I could walk without pain and it was wonderful. BUT when the neurosurgeon put the permanent one in he could not get the leads in the same place as my PM doctor. The trial was done in my PM's office and the permanent one was hospital outpatient. Some people do get some relief and some don't. Some people get fantistic relief and some get a little. Best thing to do is ask your PM doc about it, I've talked to many people who had good results with it and everyone is different.
When the trial stimulater was working the Neuropathy was gone but it's back now. I take Trileptal ER 3 times a day for it and it does help. Neurotin and others did nothing for me but as usual, everyone is different. I have such weird reactions to meds and have tried many.
There is only one way to know if the stimulator will help you and that is to ask your doctor about it. I hope I didn't scare you off. My back is such a mess with degenerative disc disease that it's a wonder he could even get the leads anywhere in there. There is a lot of info on this on the internet also.
Hope this helps you, don't get discouraged and remember that we are all different and it may work great for you, I hope! Wishing you less pain day by day...
I just CAN'T imagine how I missed your question when first it was posted!
I too live with neuropathy which is so painful that no one but my husband quite understands what I endure. I'm so sorry that you are a victim of PN!
PN truly is so painful and eludes medications, making it difficult to treat.
Has your doctor found the reason for PN? I'd imagine you've had the myriad of tests, is that true? Or has your doctor just chalked it up to pain and let it go at that?
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