Hi, my name is Rae.....I lurk around in the sections: Chronic Pain, Peripheral Neuropathy, RSD... Frankly I don't know where i belong. All i DO know is that for the past 5 years I have been plagued with horrible pain in both legs - piercing pain at the knees radiating outward. Neurologist diagnosed me w/small fiber neuropathy via Nerve Conduction Study. However, i do NOT respond to any of the neuropathy meds (Neurontin, Lyrica, Amitriptyline, etc) I was told by another specialist (pain) that it is RSD. The pain began in the same timeframe i had broke my left hand (kicked by horse)....the hand healed fine, but this unrelenting pain in both legs is about to drive me nuts. It has basically ruined my whole life.

The only relief i get is from powerful pain meds. Currently Fentanyl 100's every 48hrs and Lortab 10's for breakthru pain. And even THEY are becoming less and less effective. SO i am VERY concerned that either: A) my tolerance is going higher and B) my condition is getting worse or C) BOTH.

I'm going to be trying a Spinal Cord Implant (targeting Radiculopathy). I have searched the forum and found wonderful people everywhere with input and struggles of their own... I just don't know which section I fall under. I am needing advice or at least point me where would be appropriate.

Please help ....

So glad you are asking for help-this is the place in gerneral and in specific needs for support. I am relatively new also and share on several levels as I perceive the focus. I have a very complex combination of issues, too many to list or fit in one category. And this has led me to some beautiful folks on several threads. Start with the PN forum and I am sure you will begin to feel there are things you can do to feel less dependent on pain meds alone. I encourage you to hang in there- you are not alone-and others do care and are capable of understanding where you are at All blessings to you, Tinglytoes

Hello,
Be sure to check out the useful sticky threads on most forums, if you haven't done it yet.{ above the main threads list on each forum}
The stickys usually contain a crash course in the best sites to learn about each forums subject.

Hi

It's good to meet you.

I doooo understand. I guess a couple of things. It won't always be this way. There's tweaking to be done when you have problems. For now, it's okay to do what you're doing with the pain meds. Don't feel bad about it. There's lots of cautions and I'm sure you know that. I would be worried too. Tweaking again, with the meds and ways to administer pharmacological regimens. You have to do what you have to do to get by right now. It's okay. We all understand.

Please be cautious about doing anything invasive when you don't understand things. Most the time you can't reverse invasive procedures. It's bad now but it could be worse. Not meaning pain pumps as the need to be most cautious about, but you have to feel comfortable about the results you're going to get even though there are known risks. Is that particular procedure going to fix my particular problem, or a particular problem? Do they know that it will help that particular problem, minus any known risks occuring? And a lot of times, unbeknowest to most patients, the aftercare and limitations of some procedures can be more than you bargained for. I know pain is hard to endure on a 24/7 basis. I know that. Just be sure.

Five years is a long time. I say I've lived through 7 years of hell. The last two haven't be a picnic, but not HELL! There is a difference in HELL and tolerable and managed and anything in between. I do sympathize with you. I wish it weren't so.

As you research here, you'll have lots of things to explore and try. I gathered morsels from wherever I could. Trouble was, not everything helped. I had to try, and try something else, and something new, someone new. I learned to grade things as positives and negatives. Your body will know.

Yoga is good to start with, kind of gets you in touch with your body. Even though I had to have supports and props at first, I still did it. It got easier and I got better at it. Yoga master's not working at this time and I miss her.

Just this year, I found a nautropathic healer and visited her for several months. Said she'd been in my town for 20 years. I'd never heard of her. She had lots of new ideas and things for me to try. Business got bad. She closed up shop and moved to Florida.

Oh, probably in late 2007 got to try LED and infrared light pads that really made a beliver out of me, for me. That's new to most people, even doctors. You may have that in your area and not be aware of it. Massage therapist and some chiropractors and PTs use them now. Lots of different models and versions. Would share in that knowledge and experience if you want.

There are other alternative things to try. Don't give up.

Better nutrition and hydration is a must.

I even gave up smoking my Winstons. Don't miss it now but that was hard. That was a double positive for me.

I hope you find some relief soon, in whatever way you have to get it.

Sure is nice to get replies from you guys - means alot to a newbie...
5 years ago I was the one that was helping others.....involved with youth groups in church bands, spending time with the lonely elderly folks, playing guitar at nursing homes....etc.... and NOW i feel so pathetic and useless and the depression cloud takes over.....One of the hardest things to try and figure out is WHERE did i go WRONG??? I just dont' understand what happened!
Alot of people have SOME medical issue to attribute their pain to, but for the life of me I just don't get it!!
My apologies for sounding like a crybaby....

Thank you Broken Wings (perfect title --wish I'd thought of it first ha)
you give good input Re: treatment options that get away from medical mainstream.....I'm wondering if the LED and infrared lites is the same as "ChromoTherapy". I did that for awhile....quite a few sessions actually....It's where you lay under different colored lighting depending on what is being targeted.... tried acupunture.....holistic meds and treatments... chiropractors, herbal cocktails galore ..... I could give Yoga a good shot...haven't done that...

Believe me, 2 yrs ago when i first was told about spinal cord stimulator implant i laughed it off and said i would NEVER consider something that seemed so 'radical'.......but here i am......
Can't keep taking hardcore meds forever.....eventually liver/kidneys will wear out. I recently had to take a bunch of "Milk Thistle" and cut way back on the acetaminaphen products to get my liver enzymes back down. That sure was a wake up call.
Anyway, i just want to thank u for making me feel welcome
I come from a small town and nobody seems to 'get it'. It's just too hard to comprehend. I don't want to seem like I'm looking for attention, so i basically just hide away in my room watching the days go by. I've turned all of my friends away with one excuse after another because it's just too hard to say 'I hurt'. Boo hoo. I can't believe what this had turned me into.

My heart goes out to every single person on this forum because THIS is where people 'GET IT'. Everyone here has struggles. Someday i hope to be more of a 'helper' rather than a 'whiner'...... meanwhile.... i'll look around the forum....
God Bless
Rae

Welcome. We all have our battles it seems. Hang in there. Thats all I can offer at this point. Good Luck and hit me up if you need to just talk or vent.

Dewey

hi Rrae and welcome,

i'm sorry for all the pain you're in.
i hope your drs will be able to help you.
i don't know anything about your dx. i have MS.

hope to hear more about you.