Peripheral Neuropathy Help!
 

Hello,

I have had crohns for almost 20 years, diagnosed when I was 13 yrs old. I have been through just about everything with this awful disease, from two surgerues to almost every drug on the market. I had a flare up this past January and was hospitalized. Apparently humira stopped working after 5 years on it. While in the hospital they started me on prednisone (20 mg 2x a day), flagyl, cipro, and entyvio. I was discharged and told to continue to take the steroid and the 2 antibiotics. The cipro was removed quickly as a I started to have bad symptoms but my GI told me to stay on the Flagyl (250 mg 2x a day) and the prednisone. About 4 weeks ago I stated to develop extreme pain in my feet. I would get shooting pain, numbness, tingling, and hyper sensitive to touch. To this day, the pain has gotten worse. It is extremely hard to walk and I can only sleep at night if I take Percocet. My GI referred me to a neurologist who hasn't said for certain it was because of the flagyl but he did do blood work and an EMG which were normal. He wants me to take a drug called Gabapentin 3 x a day at 300 mg each. I am afraid to take it as I have read some pretty nasty side effects.

I am basically reaching out for some help. I don't know to do. The more I read about neuropathy the more I get scared. I have read that it is irreversible if it was from flagyl. I can't imagine living like this forever as even walking is so very difficult. The pain, numbness, coldness, and needles are so bad I can barely stand up to work. Has anyone else experienced these kinds of issues? I welcome any advise! It has already been 4 weeks and I feel like it is getting worse !

Thanks for reading.

Gaba
 

Hello Dman, Gabapentin and Nerontin,generic and brand name if I am correct. Since it is your first post I would say that there is much experience here but none have the sheepskin on the wall. I have not heard conflicting info here, not the case with U-tube. So learn to use the search function and lurk and read. There are many consistent themes that span many different types of PN and its symptoms. Gaba seems to work for some and not for others. It's side effects are not bad if it helps you. 900mg/d is only one-third the dose that some take. My side effects were mild blurry vision when drinking coffee and losing train of thought once in a while. So take everything with a grain of salt and try to confirm if you think you have been handed a pearl. Many start a journal to not lose things to the ravages of time and memory. Medications you are on, date, pain level, what symptom you are starting a new pill to treat, etc. I had such tender skin on tops of my feet at nightime that Mortons Epsom Salt Lotion let me use the bedsheets again. Good Luck, Ken in Texas.

Does it ever get better? That is what I am most concerned about. I can't imagine living the rest of my life like this.

Hi dman,

Sorry to hear about your situation. I'm not a fan of pharmaceuticals because, as you learned, you never know what can happen.

I can tell you this much about gabapentin, though. My neurologist is not a big pill pusher, and he was the one who prescribed it for me. When I later went to an integrative medicine doctor, and I told her I was taking gabapentin, she said, "Ok, don't be afraid of that one. Some of the newer ones are bad news."

I no longer take it because I just think I can do without for now, but after about a week's adjustment period, I had no noticeable side effects when I was taking it.

If you read through threads, you'll find a lot of suggestions for pain relief...Morton's Epsom Salt Lotion, Epsom salt baths, Lidocaine patches, etc..

Nerves can recover from injury and insult, so don't think you're doomed with this for life.

One suggestion I would have just on basic principal, high blood sugar is a well-documented insult on nerves, and not everyone with blood sugar issues is caught during normal screening. If you are prone to eating a lot of sugar and carbs, try to cut back.

Welcome dman9271. :Wave-Hello:

Dman: Getting better is a relative term. You may or may not fully recover and be completely pain free. But, I think most people can find some level of relief, through some combination of diet, exercise, supplements, and medications.

PN is one of those things that you may have to work hard on to improve. Your doctor may not offer anything but medications to treat the pain. But if you do your research, both here and elsewhere, you can find a lot of information on how to improve your diet, get into an exercise routine, start taking some supplements to support circulation and nerve health. Some people find meditation, acupuncture, and other alternative therapies to be helpful. And, ultimately you may have to turn to medications. (It doesn't have to be forever, but you may need to control the pain while you search for other things that can help to reduce your symptoms or possibly even heal your damaged nerves.)

I just want to say thanks for your post. I am new to PN also, and I too have (had) this fear that it is getting worse and that I will never get better.

I am so grateful for the responses above me and for the hope and insight given to you. (which I have received as a domino affect)

Also, I am grateful for other info I have been given and have read on this forum. MrsD comes to mind.

There is much information about diet, supplements, topical treatments, etc. to be found here.

Also want to mention that I too, have another disease/condition that was with me before PN struck. Myasthenia gravis, diagnosed 2000, but probably with me for longer. It has not been, and still is not a walk in the park. And I know your illness is not either.

And another diagnosis/illness added to the one(s) we already have is not something we needed or were expecting. It is quite frankly, the PITS!

But I think with the help of this forum; and as someone in an above post said; with some (it seems like many) lifestyle changes and vitamin therapy, hopefully our PN pain and symptoms can be somewhat alleviated.

Good luck. Try to stay positive.

We are ALL in this BOAT of LIFE and its challenges - together!

Things will change
 

I won't blow smoke and say that it will go away. Symptoms that are your first priority now may move to the back of the line. I have trauma-induced PN with a diabetic underlying cause. The tender skin on the tops of my feet is no longer my greatest concern. I had Amyotrophy that took priority over PN symptoms. The Gaba may help you. Time will help you. Nutrition cannot hurt you. I don't know anything about Chrohns disease but many here steer away from sugar. In my case it has gotten better but yea I still know its there. I also believe in excersise to tolerance. Good Luck, Ken in Texas.

It is 11:30pm and I'm very depressed and in extreme pain. The shooting pain in my feet is unbearable. My feet feel as if I was running through snow barefoot while little needles prick me non stop. I have taken the gabapentin as prescribed (300 mg x 3 times per day). I took two Percocet about an hour ago hoping that would at least let me sleep. But no-nothing at all. No relief whatsoever. I can't lay down because the blankets touching my feet and ankles sends me screaming in pain. I have to be honest, I can't imagine living my life like this. I'm not saying I'm suicidial but extremely depressed and frustrated. What can I do to change this?

Thanks for reading my rant...

Hi there. My name is Melody. I am so sorry to hear that you are in such pain. My husband has had this for many years. In his case, he could not tolerate the neurontin or any other meds. What does help him is rubbing Menthol on his toes. For whatever reason, it eases the pain of neuropathy (in his case). He also uses vicks vaporub. He uses Bengay, he uses whatever contains menthol. He's tried the compound creams, the meds, nothing worked. What has worked for me (because I had diabetic neuropathy) is a supplement called Methyl B-12. I have taken it for about 8 years now. Go to puritan pride on the internet and click on Methyl B-12 and read all about how it can help nerves. I started with 1000 once a day on an empty stomach. I then began 5000 every day (no side effects whatsoever) No more burning or pins and needles. I'm sure Mrs. Doubtfire will come along and help you further. She's the best.

I'm sorry you are going through this. You are in a lot of company on this forum. Keep reading all the info and do searches. And please do look into Methyl B-12.

All the best, Melody
P.S. Don't know if this might help you but just today someone bought us the Shaquille O'neal's Smart Relief Tens Unit. Many people here use it for their neuropathy. Do a search on Tens Unit in the search option and you can read all their results. We just got it today and it wasn't purchased for neuropathy but for back pain. I have back and knee pain and my husband has SEVERE back pain. When I put it on him, (I didn't ramp it up high enough), he didn't feel the effects of the tens unit. When I used it on my back, Holy Moly, it did the trick. Later on I put it on my knee and it's the easiest thing to use. You just press the PLUS option to ramp it up, or you press the MINUS option to ramp it down. Do a search on youtube and you'll see the video on the Smart Relief Tens Unit. I can't believe that I was able to go to dinner and wear this thing and I had no knee pain. It shuts itself off in 30 minutes. Look into these things. You just might find some help

Hi dman,

I know you have been living with Crohn's for a heck of a long time, but has your Depression you mention been with you, or is it new with this horrible condition?

Depression is a serious side effect of Chronic Pain conditions, one which can rapidly escalate if ignored. It also has a very physical affect on the body, increasing pain by 1-2 points on a Pain Scale. Then it starts having detrimental effects on work and family life.

If you have not already done so, I urge you to speak to your GP about your mindset with your changing condition. I'm not saying to bung handfulls of ADs down your throat, perhaps a few chats with a Counsellor experienced in Chronic Pain Therapy will help you cope with a new 'normal'.

Of course, you have already found us - your peers - who are living the life and can share first-hand experience and there are many Forums across the Board where you will receive support.

Dave.

Did I mention?
 

Mortons Epsom Salt Lotion was some relief in 15 minutes for me on my feet. The Gabapentin will have to build in your system so it may take a while to help. The Dr might increase the dosage also but you have to wait and see for that. I remember the state of panic that takes patience away. After the panic came a sence of loss that made me angry. Chronic pain can drive people to depression but IMHO it is too early to say that about you. You do need to tell your Dr. how much sleep you are managing to get. Your b-12 number needs to be above 400. I am still in a relationship w/sleeping pill Zolpidem. So rant on, many here to listen but none with quick fixes. Otherwise there would be no need for this forum. Good Luck, Ken in Texas.

Update
 

So I had my appointment this afternoon with a new neurologist. He was very nice, spent over an hour with me. He said that he has had one other patient who developed neuropathy from Flagyl. He said that it took her about 18 months to start feeling better. I almost fainted when I heard that, it seems like forever from now. It has only been a month and I'm going crazy! He said all my blood work and the EMG came back normal. He prescribed a stronger dose of gabapentin for the evening (600 mg) and then Lyrica 1 pill 3 times per day. Also gave me a prescription for Lydicine cream but said it might not help at all. Lastly, he told me to continue to take the oxycondon at night to sleep. I am not too crazy about this but I guess I have no option. I can't sleep without it.

Has anyone tried Lyrica before? Any thoughts?

Thanks
Dan

I know several people who have been helped a great deal by Lyrica. My husband could not take the side effects of either either Gaba or Lyrica. But I do know several people who were helped tremendously by the Lyrica. The only drawback was the weight gain. It just happens to some people when they take Lyrica. But it did decrease their pain level.

I guess it's a toss-up.

I do wish you well and let's hope you heal soon

Melody

Preface, everyone reacts to meds different out of the way? Good.

I was on Lyrica over a year. We moved up, down, around on dosage- we found 100 mg 3x day better coverage than 150 mg x2. 300 feels like/felt like the maximum I could bear side effect wise- any more and I felt driving may have to come off the table.

It cut dymptoms for me, with what short term felt like tolerable side effects. I had no weight gain, but my neuropathy is diabetes related, so I was reluctant to start it. At the end of the day the relief wasn't worth the feeling of dullness I had developed. It felt as if my head were a bean bag chair, put upon by some weight.

My sleep is no better or worse, but boy can I ponder with greater vividness and clarity.

Good luck,

Jon