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Posted By : Alcie - 5/8/2017 6:41 PM
Broken neck 4 years ago - C3, 4 others crushed; ACDF C3-4, C4-5 fussed spontaneously. Broken ankle, with foot twisted backwards, 2 years ago, tendon transferred from toes to ankle, Evans osteotomy last year.

Tried ALL neuro and pain meds for tingling, burning, pain. Side effects worse than the level 8 pain. cervical MRI "not much worse." Nerve study last year - no nerve problem in legs.

Saw neurologist today. No clue what to try next. Burning pain increasing in foot to hips, losing balance, falling a lot, bladder and bowel mild loss of control. The severe itching - major complaint last appointment (6 mo ago) - lessened, not gone, by itself halfway last month with no treatment.

I didn't and won't, and not allowed to, ask for pain meds from him, as I see a pain doc, whom I trust. Next appointment with pain doc next month. Meds changed 2 months ago, not helping enough. Oxy, tram, Ativan. Fibro, slipping ribs, scoliosis, injuries ... I've had numerous spinal injections, ablations. Worked for original conditions, not helping for neuropathic pain from broken neck, and now, ankle.

Neurologist says will do MCG next appt in November if no change or worse. Had one last year. Not fun! Hurts!

Ankle swells, and severe pain at osteotomy area. From the metal? I still hurt where the plates and screws were taken out at the 3rd surgery. They hurt awfully all the 10 months I had them. I have a new plate in foot, and it's swelling and very painful, despite pain meds.

But the worst is the burning pain. Increasingly intolerable. Worse when I walk a little. Care for spouse in serious medical trouble, cooking, cleaning, mowing, gardening and kidsitting grands and drive self to appointments and shopping. I'm needed, can't quit.

Any new ideas for neuropathy?

Posted By : (Seashell) - 5/9/2017 7:50 AM
Alice:
I hear you. You are miserable and need relief.

In a previous post, I mentioned compounded pain ointments that are providing pain relief for a wide swath of neuropathic pain conditions.
The specific post is located back on page 4 and is titled "chronic pelvic pain - male."

My mother is using a pharmacy compounded pain relief ointment with good effect for neuropathic pain in her foot due to peroneal nerve injury during a total knee replacement. I also know a family friend with diabetic neuropathy who is using a similar compounded cream with good results.

The ingredients can vary depending on your needs. Most contain some mixture of ketamine, lidocaine, Elavil, and an NASID or a steroid.

Go to the site I reference in the post (CompoundRx.com). This site is a wealth of information. Many pharmacies have many of the individual compounding options already compounded and available for dispensing. The number of people with chemotherapy related neuropathies due to the platinum-based drugs is staggering and growing the need for therapeutic options for pain control.

Best wishes that something here brings you relief,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : straydog - 5/10/2017 8:45 AM
Alcie, I wish I had something for you to consider but I am out of ideas. Perhaps looking into some of the things Karen suggested above may be an option.

I know you have a lot going on & have a ton of responsibility at home in addition to dealing with all of your health problems. Your ability to handle all of this is just staggering. My hope for you is that you get some relief. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Lynnwood - 5/10/2017 10:34 AM
Has anyone discussed Lyrica with you?

It is used to treat nerve pain, but it may not be something that a regular "pain Dr" would consider a pain medication. It's original use was with epileptics & diabetics, now it's often used with fibromyalgia and lupus.

You may need to discuss, with the neuro, things that alleviate nerve inflammation (thus relieving pain). I don't mean go around the pain Dr, but maybe get some fresh ideas to give the pain guy.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Alcie - 5/10/2017 2:46 PM
Thanks for the suggestions!

I am trying to understand how topicals can help with nerve pain that is from the spinal cord. I know touch sensation is jumbled in my neck where it was broken, and my brain is interpreting everything as pain. It's worth a try to see if local treatment will stop sensation, especially Lidocaine. I'll need a prescription, so will run this by my pain doc. My local home town pharmacist will compound. Lots of them will.

I took Lyrica for fibromyalgia years ago and gained half a pound a day, and it wasn't all water. It took months to get the weight off. Neurontin caused me a bout of apnea and I thought I was going to die.

I have a full typed page of meds I can't take for allergies and bad reactions. This includes nearly all the "nerve" meds like baclofen. OTC meds don't agree, mostly because of sulfites.

I'm already on Norco, tramadol (for fibro) and Ativan (lorazepam - at night for muscle spasms). I tried other benzodiazepines, but they all lasted too long, except for diazepam (Valium), which scares docs thinking I'll get addicted. (Frankly, I'm more dependent on lorazepam than I ever was on diazepam.) Pain meds don't even touch the burning sensation. I thought they worked in the brain, but maybe somehow it's because the pain isn't "real" and is just something my brain interprets from the jumbled signals where I broke C3.

Topicals sound like a good thing to try!

Posted By : CaliJR - 5/13/2017 9:57 AM
Hi Alcie. Are you in a location that you can try medical CBD or THC for pain management? It can help with pain and insomnia from the pain, I know I used edibles during the rough parts of my cancer treatment. I mean, if you really have tried everything medically then you you have to look at alternative medicines I guess. I wish you luck in your journey. Take care. -JR
CaliJR
Age 52. PSA 7.1-PSA Free=5% 9/15: PCa G9 (4+5)
Prolaris Score 3.6-High Risk
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IMRT: 28 Fractions Completed 5/5/2016
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Chronic Pain Forum: Rotator Cuff & SLAP Repair 2-16-2017
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Posted By : Alcie - 5/13/2017 6:48 PM
Not yet. My pain doc wouldn't prescribe until PA gets a lot less restrictive anyway. I'm trying OTC lidocaine and such. It may help a little.

The broken ankle isn't helping anything, just confusing the issue of the spinal cord problem. When I walked around our pond yesterday I barely made it to the house and needed the knee scooter all evening. It's a year and a half since the break, 8 months since the 3rd surgery. I don't get to see the surgeon until June. I'm going to ask for an MRI.

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