alkoholiq

Hi, today I have been diagnosed with alcoholic neuropathy at 36. 12 years of intense drinking. All the blood work and vitals fine. Still, painful symptoms in calves and behind the knees when standing. Bilateral. Stabbing pain/pierce in the right foot. Random and in any position. Interferes with sleeping. Appeared just 4 days ago, upon my quitting and withdrawal crisis.

I am afraid if more's to come and if it will ever go away. I quit drinking completely just recently but won't start again.

My question is. For those who were diagnosed with neuropathy, did you truly experience improvement of your symptoms after 1 or more years of abstinence and PT/exercise?

Did the stabbing pain go away? Are you able to sleep now? Did standing/walking got any easier for you?

What I see online is confusing and contradictory, so some honest first-person testimonies may help me get a realistic picture of my future, and maybe some hope.

Please let me know.

suki44883

I was diagnosed in May of last year with peripheral neuropathy, however it isn't related to alcohol. I have been sober since 2008. I can't respond to whether or not it will abate with sustained sobriety. I am curious as to whether your doctor recommended any tests, such as a CT scan, EMG test, or other tests in an attempt to find a cause. How can the doctor be sure it is caused by alcohol? I am also curious as to whether your doctor prescribed any medication for your painful symptoms.

Dee74

Hi and welcome alkoholiq
I have no relevant experience to share but I do hope things will get better with time.

Welcome aboard

alkoholiq

I am doing EMG on Friday which is expected to confirm. I asked for it two years ago, but they told me my neurological exam was wonderful, without doing the EMG. I was redirected to PT for supposed hamstring issues. They suspected a lot of things. The pain persisted and I kept drinking. Two years down the road we are doing the EMG that should show the extent of damage.

I tried Gabapentin already, for suspected back pinch. Didn't work. Weened off. Now it's Cyclobenzaprine, which according to doctor who diagnosed me today won't work. I will reconvene with the other doctor who gave me the pill without suspecting neuropathy to discuss further options.

As it is, and with these symptoms, my life is not worth living. Unless pain killers and antidepressants can change things, I'd rather not live. Yet I can't quit because of my loved ones. I can't quite pursue my career any more. I was doing well, and "balancing" school with frequent binging. Didn't know this can happen. Onset was surprisingly rapid, on the whole. Disaster.

suki44883

I felt the same way with my pain. Said I didn't want to live the rest of my life in excruciating pain in my hands and feet. It was so bad I'd just sit here and cry. They finally got me on a high enough dose of Gabapentin that actually helps.

They never found a cause for mine and said that about 50% of the time, a cause is never found, so they just treat the symptoms. I've accepted the fact that I'm probably always going to have some limitations on what I can do, but I will take that over the horrible nerve pain any day.

I hope they can track down a cause for yours and cure it, and if it really is alcohol related, I hope continued sobriety makes it go away. I wouldn't wish nerve pain on my worst enemy.

GG7

You can and will recover. Unfortunately, I started having some tingling that started a few months ago, then spread to feet, and other areas. Went to get an EMG and from the test it made it worse for about 2 weeks. Then pain went away, but the tingling came back. There are many folks on here who went through it. surprised not to see more replies to your post from others who got past it. There are folks who got better within weeks and some months. But the important thing there is hope. I do feel like I am getting better. I started excercising a few months ago, stopped drinking, and take vitamins and amino acids that are supposed to help. Try Thiamine, Vitamin B12, R-lipoic acid 300mg, inositol, and a multivitamin. And "do not drink". I believe it will pass, and if you drink you are eliminating or prolonging that from happening. The pain will minimize if you don't drink. Right when I thought it was getting worse a week or two later it started minimizing. Now I am just waiting for it to go away completely. Yours will! Be prayerful too This is all just my opinion based on what I have gone through and heard from others.

Dee74

Just a reminder that sharing personal experience of what worked for you is generally fine - but recommendations for others is medical advice - and that is not allowed.

Dee
Administrator
SR

least

I had some discomfort in my legs and feet. Don't know if alcohol caused it but after a while it got better, so being sober certainly didn't hurt. I never had any tests for it.

I hope they can find something to relieve your pain.

alkoholiq

Strange. My EMG came out right. No nerve damage. All good. Makes sense in the light of my other good tests and vitals. Now I suspect my anxiety to be the cause of my strange, unbeatable pain. Back to some heavy binging to break it, I guess.

J/K

suki44883

Alkoholiq, my EMG test didn't show anything either; neither did the CT Scan nor the mammogram. All my blood test came back fine, too. Even so, that doesn't mean my severe pain wasn't real. Thank God, my neurologist believed me and we will continue to monitor my progress every six months, and I will continue with the Gabapentin as long as it continues to help.

alkoholiq

What's the dose of Gabapentin you're drinking and for how long, may I ask? I went to 900 mg (max allowed being 1200) for a short while and was on 600mg most of the time for like two months. To no avail. Doctor weened me off.

Were you diagnosed with neuropathy?

I am not sure my pain is primarily nerve pain. It might be myofascial, meaning soft connective tissues of my muscles got clumped and need to be relaxed and "melted," as they say, eventually releasing my tight muscles and strained nerves too...

All best!

suki44883

Yes, I was diagnosed with neuropathy.

I'm not sure I am allowed to tell you my dosage, but it's higher than what you were on. I don't drink it...it is in tablet form.

alkoholiq

I see thanks. If I return to Gabapentin, I will do as my doctor prescribes.

I apologize for a false statement in my opening post. To clarify: even though the ER doctor who examined me after I had a panic attack the other day virtually (but not definitely) diagnosed neuropathy, said I should do EMG, and gave me a handout for neuropathic pain management, today the neurologist who did my EMG said I don't have any nerve damage and my nerves are in fine health. This is the third neurologist in two years who had outright denied that I have neuropathy. It always kept coming back to me, because the pain certainly doesn't feel like muscle pain, and no amount of exercise helped. However, I never did soft tissue treatments, and my principal doctor indeed described my pain originally as myofascial before forwarding me to several specialists who tried all sorts of things to no avail.

So I don't know. As it is now, I am trying to be rational and put fears aside. I explicitly asked the neuro today about excessive drinking and he said there is no nerve damage and the spread of my symptoms is too odd for neuropathy... For the time being, I will take it, but I have to see what PMR doctor who referred me to this neurologist will say. I might see a spine specialist too.

As you say, the pain is real, and I will consider all my treatment options. But I'm starting to like this idea of myofascial pain that gives nerve and nerve-like symptoms too without being this horrible, irreversible neuropathy... I will have to try different things at a time.

I hope this thread will be of some use to other desperate souls in the future.

alkoholiq

Update and two important points:

1) Suki, our cases are much different. No wonder your EMG and blood tests were good in May last year, since you quit drinking in 2008. Since I quit drinking so recently, alcoholic neuropathy would have shown nerve damage, and blood tests would not be so good.

2) I self-diagnosed, but I nailed it at last. It is spinal stenosis. In fact, my lower back MRI had shown a mild narrowing of my L5 disk. However, my doctor said my pain “probably” isn't caused by that. I did some research, and some targeted exercising today, and Mayo Clinic's simple description of my symptoms wonderfully ties everything together, explaining the process, the changes in symptoms, etc. Targeted exercises gave immediate sense of warmth and response in my lower back, unlike any other exercise regime I tried so far (none of which targeted lower back). I'm a far cry from relief, but 100% sure it is stenosis. I will make an update if it turns out I'm wrong, but I am reasonably certain I have figured it out. All the weird, seemingly unrelated symptoms are explained by Mayo's description of stenosis (especially that it can be in both legs, and that it only hurts while standing and walking, not while sitting, unlike typical sciatica). This renders this post borderline irrelevant (perhaps it should be deleted). If anything, it shows that nerve symptoms can come in incredible variety, and that we shouldn't trust our doctors as much as we do. After 2 years of exams, they finally had it read correctly by the radiologist, and still they say it's “probably” wrong. I'm heading to a spine specialist next, but if they say it's not stenosis, I will say they're probably wrong.

All best to everyone. I will post updates if necessary!

Stay sober. A good year of sober exercise is ahead of me!

alkoholiq

For the sake of record keeping, let me update you on my spine exam. My spine specialist doesn't think my mild stenosis is causing my pain. So I was wrong again. She took me all the way back to what my first neuro (April 2018) thought was a hamstring tightness as a cause of my pain. It stems from an old, long-forgotten soccer injury I had ten years ago. It gives me nerve symptoms too, which can "absolutely" happen according to the spine specialist. Still, my nerve exam was "beautiful" according to my doctor, and I don't have a neuropathy.

Same consequences, though--sustained sobriety and exercise. Same uncertainty. My right hip movement is considerably restricted after that injury. If more intense therapies don't help, I will have a hip exam, and (hopefully) a surgery, because I think only surgery can fix this. It appears this injury has seriously, though not quite visibly, compromised my muscle balance and posture, pushed me into a bad gait pattern, which gradually brought about the symptoms.

Same conclusions--alcohol is bad for you, but one shouldn't panic and imagine extreme and irreparable conditions until they are medically confirmed.

Dee74

thank for the update alkoholiq

Its good its something that can be fixed.

D