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Old 05-10-2013, 05:38 AM #11
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My impression, is that you may have a "failed back"... So further testing with imaging is really the best thing to do at this time.

For pain, there are Lidoderm patches, which could be used on the area affected (your spine), to block the pain signals for you. These however, are expensive, if you don't have insurance. Ice packs twice a day for 20 minutes may help. Also the compounded pain transdermal RX products from compounding pharmacies with the various drugs in them, may be an option. But those are expensive also.
I would avoid heating pads, or hot tubs as heat will stimulate nerves. Also if ice works, don't overdo that... you don't want to compromise your circulation. Over time ice packs will settle down nerve firing, so be patient with twice a day use.

Having loss of muscle strength in the IMO is a serious thing. You should focus on that with your doctor. Perhaps there are isometric exercises you could do in bed, to keep your muscles working?
Physical therapists teach these, to people with injuries or who are post surgical to keep muscles from atrophying.

There are non drug ways to control pain. Learning meditation, and/or autohypnosis may help you not to focus on the pain.
This link has some interesting tasks, to help retrain your perception of pain signals:
http://www.openfocustraining.co.uk/exercise.html

I learned many years ago to alter my perceptions, which at the time was to facilitate my art work. But in reality this type of activity helped me to avoid focus on my painful feet which at the time were symptoms of an undiagnosed thyroid problem. I've used breathing techniques and mental exercises ever since and have found this to be very very useful for my chronic pain issues.

You might want to also post at our spinal forum... some of them have failed spinal surgeries and may have some advice for you as well:
http://neurotalk.psychcentral.com/forum22.html
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Old 05-10-2013, 10:41 AM #12
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Default

Just be careful when you do smoke. Take one puff and wait for a while (15 min). It's much stronger than it was 20 years ago due to breeding. You only need enough to deal with the pain or fall asleep, not to get loopy. It also depends on if you get mexican dirt weed or good green stuff.

And listen to Mrs D. She knows her stuff! She has helped me a ton.
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Old 05-13-2013, 04:36 AM #13
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Default Another thing to try

You have come to a good place; Mrs. D. and others have helped me with good information, which always helps.
Your mentioning your Italian heritage leads me to ask about your diet. Recently, I mentioned to an Italian friend of mine that I had gone gluten-free to heal my neuropathy. He said, "oh, you have the Italian disease. My whole family has it."
In fact, celiac disease, intolerance of the gluten found in wheat, is extremely high in Italy.
My wife and I love pasta. We found a brand, Tinkyada, that is gluten-free, but still tasty. Most brands are not as good as the traditional; but this one is.
I have been off gluten for one year now; and while I'm still not completely healed (I expect that to take another 1 to 2 years), I am able to get through my days without any pain killers; a year ago, I was popping Ibuprofen like candy, just to get through the day.

Good luck with your journey.
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"Thanks for this!" says:
Idiopathic PN (05-14-2013)
Old 05-14-2013, 07:21 PM #14
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Quote:
Originally Posted by chaos View Post
Your 13 yo should be doing a lot of stuff by now, and should be able to even cook simple meals (and it's the best way to teach him to take care of himself later on). The 7 yo can do things like take out the trash and unload the dishes. Getting them to do it is a different matter! I fight with my 10 yo all the time trying to get her to do stuff.

It's hard to ask for help, but you have to do it. I get that you make all your meals by scratch, I usually do to (I even garden and can food), but it's so hard to do things like hold a knife sometimes that I just can't sometimes. Just getting somebody to cut things up for me really helps. Getting somebody to take things out of the fridge and put them back even helps. I have to ask people to open jars and bottles now. I have to ask somebody to carry the heavy laundry basket back to the machine. I have to take much longer to get anything done, and I have to plan for it.

You just need a GOOD doctor. If I wasn't on my anti-seizure med, I wouldn't be able to work either. I work full time and my husband is a (lazy) SAHD. We'd be really messed up without my paycheck. I really worry about the future and how bad I'll get, and thankfully I've gotten better a little due to the right meds and supplements. Currently I'm just trying to deal with the breakthrough pain as the actual PN is getting worse. It started in my feet and is now in my hands and random other spots.

I know you've heard this before, but the best way to be a good mom is to take care of yourself first. You need to be on the right treatment plan. A pain management doc can prescribe the right meds for you, both pain relief and anti-seizure.
I totally agree. Teaching kids a certain level of independence is very important. I lived with my grandma and until I was 20 odd yrs old had never done chores or cooked. It did NOT serve me well. I literally couldn't even sew a button or boil water. NOT GOOD!!
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Old 05-14-2013, 07:39 PM #15
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Default Hello Fiestlady

Welcome to Neuro Talk. You will find compassion here. Lots of us have this horrible pain. We exchange ideas that may help I have PN or RSD in left foot and ankle. I go see a physiatrist. This is a pain specialist first, and then she treats on a cellular level. I have medicare-medicaid, and you are right, NONE of my doctors excepts that. Only they do.... I confronted my pain doc. and asked her why she sees me at all. She said honestly, that some can pay, and some cannot. In her opinion it balances out. I am ever so grateful she does see me on a regualar basis. Yes you do need more help. Some doctor has to take heart with you and treat you like a human being in pain. When you find this doctor, your life will get better. It is a question of searching. Get angry about it if you have to. You deserve good care no matter what state you are in, or what you financial situation is. Living in pain does drive a person nuts. It causes depression, and a feeling of worthlessness. Seek the help. If you post near where you live, perhaps someone on our site will have a name for you. Also your primary care doctor, should give you a referral, and if necessary call that doctor himself to get you in. don't give up, get assertive and find that care. We all will support you here on NT, while you go through these issues.
Have heart, someplace there will be help for you. ginnie
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