I guess I might need pain management. What the heck to do?
 

I've been fighting it. I can't sleep. The neuropathy has now spread throughout my whole body. The pulsing pains had me up since 3 am and I am so sick of it. My feet hurt so much to walk on them today and if I lie down the pain shoots all around with random twitches everywhere and buzzing. I am exhausted.

In the beginning (September) when this thing attacked me, I took the drugs prescribed because at that point they thought it was just herniated discs, so I wasn't afraid to take drugs (oxcodone for pain and valium for spasms) for such a limited time. I was told 2-6 weeks for healing. Then the neuros all said- no this is not herniated discs, its something autoimmune going after your spinal cord....blah blah blah. Throughout the course of different doctors for 2 months and without a diagnosis, there was still the chance in my mind that this was herniated cervical discs and that I'd make a recovery. I am so anti medication that it upsets me to even take an ibuprofen let alone narcotics or longterm drugs.

Anyway sorry this is taking so long.

I was told by one rheumatologist that while whatever is wrong is healing I should try cymbalta. I did and it kept me up all night and gave me crazy diarrhea (sorry). Then flexeril and zanaflex. That did nothing for the spasms and made my already low blood pressure frighteningly worse. Then baclofen. That did nothing but make tired and grouchy. Then tramadol and that made me jittery all night with NO pain relief and worsening of spasms.
One doctor wanted me to try nortriptylene, but my new neuro said it would probably give me side effects.

Have you thought about naturopathy, acupuncture, chiropractic?
If MDs can't help much, I'd think about trying some alternative care.

They are usually hesitant about prescribing narcotic pains meds until AFTER you have tried everything else (Cymbalta, Neurontin, Lyrica, Lamictal, etc...the list goes on and on).

If they have concluded the findings as to the cause (autoimmune), then they should be considering IVIG as well.

You should also consider some of the supplements MrsD suggests...can't hurt to try. BUt what ever you try, do so one thing at a time otherwise you won't know what is helping or what is giving you side-effects.

Jomar,
I have tried all natural approaches to no avail, although my holistic lifestyle is what I believe is keeping me alive. Before this happened to me (it's almost 6 months now) I was a practicing holistic health counselor... the picture of health! Now I feel like a living advertisement: Hey! Look what healthy living does to you.;) I'm so sarcastic. If I don't laugh, I'll cry. I still do believe I'm going to overcome this BS though. Am I delusional?

The thing is, they say yes it is probably autoimmune, but due to the amount of autoimmune antibodies that don't have test yet, they can't find it so it doesn't qualify for IVIG??? They also say it could have been triggered by a virus and throw their hands up and offer symptom drugs.

Yes I take all of the supplements effective for nerve health/repair and then some. At least it makes me feel proactive in some way.

Is medical marijuana an option where you live?

Hope at last...
 

Aloha... I just found this site tonight and learning my way around. I have suffered from PN for over 20yrs and do not want to do Rx's. It is getting worse as I age. Been to many Dr's... and the only real relief I had was from Capsazin and I do like soaking my feet too. Well... I have taken Valerian Root for many years as a calmative at night for sleep and then I saw it suggested for nerve pain... I had never tried it during the day as I didn't want to get drowsy. I took one capsule in the am and WOW did it work. Brought the tingling and pain down within 15min. I have been taking it for over a week now... PRN, as needed with my feet start to bark at me.... no drowsiness. I also am trying Benfothiamine with the ALA. It is a fat based B vitamin. Hope that help too. After all these years of suffering in silence I finally have hope...PS... lucky I live in Hawaii as I hate shoes... or they hate me :)

Welcome Malia. :Wave-Hello:

Thank you Kitt ...:Wave-Hello:

Pain management & sleep
 

Lots of people here hoping you get relief. I will throw in my 2 cents. Pain can drive a person to depression, if that is happening GO to pain mngmnt. Sleep is necessary for improvement even if it means taking yet another pill. Life has to be tolerable, you can withdraw later on. Good Luck, Ken in Texas.

Hi Ken,
Yes it is getting me down. I was so happy and loved life before this this crap hit me. So the pain is really getting to me. Making life more tolerable now, and withdrawing later on as you said sounds great, but with a progressive illness and being young, that terrifies me. I know no one has the answers though and in taking this one day at a time (which is all anyone has anyway), I guess I have to think of now and maybe willing to try something.

Roller Coaster
 

I gave in and was on Norco-10-325 for I was unable to be still. I had to keep moving and sleep was cat-naps. I then started generic Ambien and with the norco was able to get the sleep that is necessary. Fast foward about a year and no more Norco, just Tylenol w/codiene. I'm off Gabapentine since it did me no good.(not always the case). I still take the Ambien even though I feel I could probably drop it. I need to quit nicotine first as it is probably hindering further healing or at least slowing it. Good Luck, Ken in Texas

No, but if it was it would probably be helpful.

I tried everything out there, and I haven't found any relief, which is bummer. Of everything I have tried, MJ (edible) is the best but I don't live where it is available. Narcotics do work, but, you find yourself on a merry go round where you have to either escalate the dose to get relief or else wean off for periods of time and start the circus all over again. It's a constant battle with interdose withdrawal as well.

Our cases are similar, for me, now that all the crazy neuro stuff has subsided, it almost seems as if the fascia which has now been found to be highly innervated by small nerve fibers, is what is causing so much body wide pain. I feel like my fascia is too small for my body, very tight, very stiff, and very painful. I am trying to do stretching and if I could afford it I would have massage frequently. Other than that, it's oxycodone, as little as possible, which some days can be none, and an extreme change of lifestyle for me, which really worries me, as I have lost a lot of independence. Also IVIG was of little help for me. :/ I would love to try plasmapheresis but that isn't likely to happen.

I am just thankful that the very severe headaches are far less frequent now. Whatever I have, it is nasty and the treatments were nasty as well.

Hi Healthgirl,
 

I can offer you empathy; they *suspect* my neuropathy has an autoimmune cause. My bloodwork is mostly negative, however. So it's symptom management for now. I did find that amitriptyline, 50 mg at night helped me sleep by calming the worst of the twitching and nerve "zinging" pain. I am just now starting neurontin.

I'm reading Dr. Terry Wahl's book about diet & MS. From an autoimmune standpoint it's making sense. The changes are quite drastic for me. ;-) I love my gluten and sugar.

Hi Jenng,
Yes, I have that book and do eat almost paleo anyway. I still eat corn and rice sometimes though. I'm getting ready to eliminate them for a while since I'm still a mess. Six months ago when the shooting pain started in my shoulders and hands, I went cold turkey completely gluten free.
I don't have digestive issues, but my minerals are low and with a very high ANA, I'm not messing around with a food that is known to cause nerve damage and malabsorption in some people. I'm a holistic health coach and I recommend to any clients with any physical or emotional ailments to do an elimination of gluten, dairy, eggs, sugar, and soy for a month and see how they feel. Then each week, add only one of the foods back at a time.
Since gluten is a scientifically proven cause of gut and nerve damage, it is the first to go. It sounds hard, but after the first 2 weeks of withdrawal, you would be fine. It is so much harder than it seems and what if it was the culprit?

Excellent book. I actually asked a question about SFN of Dr. Wahls that made it on to the Paleo Solution Podcast - Episode 252 (about 30 minutes in). Her functional medicine take this condition was very thought provoking.

Thanks for letting us now. A PDF transcription is at the link below, and I think the exchange starts at the bottom of page 13.

http://robbwolf.com/wp-content/uploa...lution-252.pdf

Just curious, what pattern is your ANA showing? Mine started as fine speckled and then went to nucleolar. I just had labs drawn again and am waiting for results. I imagine it will be 2 weeks before I get them in the mail. I imagine they will also call me. Given you have a high ANA, it sure smacks of an autoimmune process going on.

Anti depressants are the best for me. Even low dose lifts my mood and helps a lot with the being eaten alive by red fire ants sensations

speckled 1:640

Mine isn't as extreme but I feel (literally) your pain
 

Have they prescribed Lyrica to you? Don't do the gabapentin... that stuff is nasty... The lyrica (at 200mg) isn't a cure but it helps me manage my pain... pain management is Percocet. My mom had shingles and she was up to 600mgs so it is effective. It's the only thing that knocks mine down so I can manage through the day. Only problem I've found is weight gain. So, now I have to deal with that but for me, anyway, the lyrica has been a godsend.