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Posts (32)

Dec 31, 2018 · Lyme disease and neuropathy in Neuropathy

I have Lyme disease and bilateral peripheral neuropathy.
Can you tell me what test you had to test for neuropathy?
I too had a negative test result from my initial test for Lyme.
Then I went to a Lyme Literate Doctor who initially diagnosed me with Lyme based on my symptoms. Then confirmed that diagnosis by sending my blood off to one of two testing companies that are not supported by the CDC and so were at liberty to show all the test results (I sent it to Igenex in Palo Alto, California). Mine came back with several positive markers of Lyme.

I had it restested a few years later and again showed several positive markers for Lyme.

I do not know for sure that my neuropathy was caused by the Lyme, it had started many year before, but based on symptoms I likely contracted Lyme when I was in my early teens.

I would suggest asking your PC Physician if he would send your blood out to Igenex and have it tested properly. Igenex has all the info on how to do it on their website.

I wish you the best of luck.

Dec 25, 2018 · instep cramps ruining sleep in Sleep Health

I have sporadically gotten extreme cramps in my feet, ankles, calves, and lower thighs that would continue to hurt on thru the day. They had gotten worse in the last 6 months. (I've had total knee replacements on both knees about 1 year ago too and worried about getting them during recovery – but like you I was spared that during my recovery).
I've tried the banana thing, stopped caffeine for a year at a time, increased my fluid intake, tried various methods of stretching, etc. but never found any relief.

About 6 weeks ago they got worse – every night and in a different place each time, but they would recur after getting back to sleep and even when I tried to get out of bed.
I found that after the first episode at night I got some relief by sleeping with a hot water bag on it, but it worked inconsistently.
As someone above mentioned I finally picked up a potassium supplement and have not had ANY more since I started taking them daily.

If I missed you saying you have tried that already I apologize and pray that you can find some relief.
I will pray for you as I know how having them compounded my own already untreatable lack of sleep.


Nov 27, 2018 · fibromyalgia pain in Chronic Pain

Two thing to note off the CDC website:

1) https://www.cdc.gov/drugoverdose/data/prescribing.html
From 1999 to 2016, more than 200,000 people died in the United States from overdoses related to prescription opioids. Overdose deaths involving prescription opioids were five times higher in 2016 than in 1999.1–
Yes it is a problem.

2) https://www.cdc.gov/tobacco/data_statistics/fact_sheets/health_effects/tobacco_related_mortality/index.htm
Cigarette smoking causes about one of every five deaths in the United States each year Cigarette smoking is estimated to cause the following:
More than 480,000 deaths annually (including deaths from secondhand smoke)
278,544 deaths annually among men (including deaths from secondhand smoke)
201,773 deaths annually among women (including deaths from secondhand smoke)
Cigarette smoking causes premature death:
Life expectancy for smokers is at least 10 years shorter than for nonsmokers.
Quitting smoking before the age of 40 reduces the risk of dying from smoking-related disease by about 90%.

Note that the opiod related deaths were over 17 years
Note that the smoking related deaths are ANNUALLY!!!

Why is it that Opioids are a "CRISIS" that requires the Government to crack down on EVERYONE that uses/needs them
and smoking is just a warning on the label??
The "CRISIS" is WAY overplayed in great part to the "MEDIA" and yet our elected officials cave to any partial truth in order to make headlines and LOOK proactive despite who their arbitrary decisions and laws truly hurt.

Sorry for the rant. I have been in steadily increasing chronic pain with all kinds of guessed diagnosis for the last 15 years and the ONLY thing that has helped are the opioids – but now I am told I cannot use them – and there are few if any affordable alternatives to try.

I currently have a Stimulator and a DRG stimulator implanted in my back, we've tried over 20 back injection, every medication you can think of (a stack of over 4" high of warning sheets) – even Medical Cannabis with no appreciable reduction in pain.

Not looking for sympathy. Just pissed.


Nov 15, 2018 · Chronic pain and medical marijuana in Chronic Pain

That is correct. I’ve been in the medical cannabis program her in MN for almost a year. While trying to figure out what if anything helps I was spending between $600-$1200/ month (all out of pocket.
For me, it may take the edge off, but if I try to use enough to really cut the pain I get dizzy (equilibrium out of kilter) no high, just cannot function.
Unfortunately, the one thing that helped (specific opiod -extended release) is no longer covered by insurance. My out of pocket would be >$3000/month. Way more than my meager disability payment.
Considering looking outside the US for treatments.
Knee jerk reactions and sweeping restrictions by the lawmakers have put me back in pain treatment more than 8 years.

FYI, I also have and keep trying anything I can afford (or not) just to see if they help.
I have a surgically implanted Spinal Stimulator, a DRG (dorsal root ganglion) stimulator that took 7 surgeries to correctly place (still only 20-30% effective after healing in place.
Far infrared sauna, biomat, Gabapentin, sleep aids, CPAP, physical therapy, nerve injections and ablations, etc.
I know most of these treatments work on most people. Just not me.

I truly hope and pray that all of you out there find the right treatment to relive your suffering.

Aug 7, 2018 · Has anybody had an implantable neurostimulator for chronic pain? in Chronic Pain

I have a spinal stimulator for lower body pain and a DRG which is focused on my feet due to neuropathy. These are both St. Jude, now Abbott.

I am currently in the medical cannabis program in MN.

I have been down the Opiod path and honestly it worked the best and most consistent, but w the New Years attack by insurance companies (obviously the most qualified to make quality of life descisions across the board on all patients equally)(joking) I was forced to go to the only other thing available – cannabis. Unfortunately for me I don’t seem to get much relief from it.

Anyway, I was really going to say that the techs originally set your upper and lower boundary’s of the stimulator but then (depending on the model) you can raise and lower the intensity within those parameters. If u want to try something outside those parameters you need to see s tech and have them reset your parameters.

On both my stimulators I have the burst system software. My original was prior to that and was constantly zapping me as I changed positions.
Now I do not feel either one unless I try to turn it too high.

Mar 5, 2018 · Gabapentin use for neuropathy in Neuropathy

I had severe cognitive issues with Gabapentin, but have been taking 1800 mg of Gralise for years now w no cognitive issues (at least as far as I can tell – my wife might have s different view).

Now that I have been on disability for 2 years they are “allowing” me to go to Medicare in May. I’ve looked thru the plans and they have Gabapentin in their formularies but not Gralise. Not sure what I will do since the out of pocket cost would be $1800/ month.

No longer is housing the highest expense in life, healthcare has overtaken it with a vengeance.

Feb 17, 2018 · Has anybody had an implantable neurostimulator for chronic pain? in Chronic Pain

Wow, that sounds like something I need to look into. The only pain med that has ever worked for me is Dilaudid. I was taking 32 mg extended release Dilaudid plus rescue pills. This year the insurance company sent me a letter that I was taking over the “new limit” of 8 mg ER. I have worked myself down yo 16 mg but my pain is more debilitating than it has been in years (and I have 2 spinal stimulators, which do help but not on all my pain as I have pain all over my body in every joint).

I think I am going to get signed up for med marijuana on my next visit so I can see if it works on my pain at all.

I’ll research the pain pump idea as an alternate.


Jan 29, 2018 · Has anybody had an implantable neurostimulator for chronic pain? in Chronic Pain

I sure hope you are over the Flu – I know any cold or virus I get reeks havoc on my pain issues.

I too reacted poorly to Lyrica.
Regular Gabapentin made me brain dead, I could not even come up with a complete sentence.
They switched me to Extended Release Gabapentin and I felt fine and it definitely helps a lot.
That’s when I had cadillac insurance, according to the open market look-ups and the look-up for Medicare (which is what they are moving me to in May) they will not cover the Extended Release Gabapentin – it would be ~ $1800/month out of pocket – Not going to happen. Hopefully the regular Gabapentin works for you – I know a lot of people who use it w no side effects.

I wish you the best of luck and will be praying for you .