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Neuropathy Help
About six months ago I went to the doctors because of pain in my legs and hands. I found out I was diabetic and that I had Neuropathy. I have been on a bunch of different medications to help with the pain they have all either offered minor relief or none at all.
Neurontin - No Relief Cymbalta - No Relief Lyrica - Minor Relief Elavil - No Relief As time has gone on things have actually become worse a burning feeling on my feet/legs/hands/arms and actually pretty much any where if something is rubbed up against it. After seeing my neurologist and trying these medications he is rather sure that the Neuropathy is not caused by my diabetes. I am to have a Cervical MRI next week. He is hoping he can do something to lower my pain levels until I am able to see nerve disease specialist. I am wondering if anyone else has had similar issues with these medications not helping and what they have done. And any other input would be greatly appreciated. |
Hi, I had diabetic neuropathy, with the Elavil what dose were you on because it took a large dose to help me with the burning etc, that with large dose trammadol sr helped me.
...and how our your sugar levels when the burning is at it's worst ? |
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My blood sugar when the burning or stabbing is 80-120. Most of the time the burning only happens when something is touching my skin. I tend to wear thin cotton pants now, this helps a lot. The stabbing feeling I get in my legs/hands/feet are harder to deal with because the are rather random. Currently both of my index fingers feel like they have metal or glass splinters in them. Is this a common feeling as well? Is lightheadedness when moving ones head have anything to do with Neuropathy? I have been having it a lot lately. |
Welcome to NeuroTalk:
Are you taking other drugs (not the PN ones)....like perhaps a statin for cholesterol? Diuretics like lasix or hydrochlorothiazide? Something for blood pressure? Have you had Vit D and B12 tested to see if you are low in either or both? Improving Vit D levels in diabetics helps with pain. B12 you should have done and get the numbers exactly....In the US the ranges have NOT be amended to reflect new low that is recommended now for the past 10 yrs. The new low should be 400 US units, and anything below that is no longer "normal". Taking a supplement would then be indicated and our B12 thread is here: http://neurotalk.psychcentral.com/thread85103.html If you are a poor methylator and have the generic errors in MTHFR enzymes your nervous system will become damaged unless you use the active form of B12 called methylcobalamin. You could also be low in folate, as it is methylated to be biologically active by the same system. If you took Cipro or Levaquin or Avelox recently, for Metronidazole (Flagyl) this can also damage nerves. Statins also can cause nerve damage. Many common RX drugs will deplete nutrients, causing nerve symptoms. Diuretics deplete B1 and magnesium and potassium. ACE inhibitors for blood pressure deplete zinc over time. Acid blocking drugs for the stomach block absorption of B12, folate, magnesium, calcium, zinc and iron. So first off, you need to look at your life and recent past, to see if something you consumed has caused this to happen. Then we can move on the supplements that help diabetics... lipoic acid acetyl carnitine CoQ-10 (must be taken with statins) also, edit to add: Have you had vaccines recently? And what do you do for a living, and hobbies...toxins can come from that part of your environment. Have an illness or food poisoning recently? |
I am also taking Divalproex ER for Epilepsy, which I have had for 15 years now.
I have had a lot of blood work done which included testing for Vit D / Vit B12 deficiencies. My neurologist did other blood work to check for other signs that could cause this issue. Which has lead him to believe it is something besides diabetes. There are some other factors he is taking in to account. I am guessing he is looking for nerve damage in my MRI or compression. The nerve disease specialist he wants me to see does not have a opening for 5 months. I write computer software for a living, and can not think of anything that I have been around that I could have been exposed to any toxins. I had one vaccine when I finally went to the doctor about the leg pain and found out about diabetes. It was a pneumonia vaccine. About 5 years ago I did have Diverticulitis, then I had Gastroparesis for a 2+ years. |
Thank you John,
This is a starting point. Get those blood levels of D and B12, , and did you have carnitine measured? Please get your number results for the B12 especially, because you could still be low and not know it. The medication you take depletes carnitine. http://www.ncbi.nlm.nih.gov/pubmed/10852092 Carnitine is one supplement used for some PNs, that are drug induced. Chemo drugs often deplete carnitine as well, and this is due to mitochondria damage. This is our mitchondrial information thread: http://neurotalk.psychcentral.com/sh...t=mitochondria Damage to the mitochondria over time stops the cells from producing energy. The nervous system seems very prone to this, and damage to it leads to all sorts of symptoms. Mito damage is now thought to be a major cause of PNs but that is still in the research arena. Do you eat foods that supply enough magnesium daily? If not doing that is very helpful, or a supplement (any type except OXIDE form which is not absorbed). Dose magnesium to start at 1/2 the RDA which is about 200mg elemental. Diabetics lose magnesium in the urine more so than non-diabetics, so looking into that would be helpful for you. Here is my magnesium thread: http://neurotalk.psychcentral.com/thread1138.html |
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I also tryed Cymbalta one 30mg dose , it was horrible and neurotin caused panic attacks. had to stop at just 100mg a day after 4 days. Also, why does your neurologist want you to see a "nerve specialist", How is he diff from a neurologist? My neuropathy was dx with a skin punch biopsy. All other tests including Bldwrk, EMG, NCS came back normal..I feel the need to go for another opinion for more testng, Im having a difficult time accepting its idiopathic..Good luck to you! |
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The supplement R -lipoic acid 100 mg, helped me with the burning part. |
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I guess 150 at night and 25 mg in the morning was a low dose. Did you have any side effects while taking it? How long did you take it for and did you having any problems with withdrawal with the lyrica? I take R lipic acid too, it helps me with the burning part too. I guess I will continue taking the 50mgs of lyrica for now, until I can find something else with less side effects and helps with this pain. Does the Tramadol help you? Some people on here are taking Savells, maybe I will check it out. Have you found a cause for your neuropathy? |
All the medications I have tired for neuropathy I was on for at least one month, with a dose increase after two weeks.
The Neurontin reached max dosage after one month. At this time Elavil was added started at 25mg at night. After a month or so Elavil was upped to 50mg at night. Neurontin was removed for Lyrica. The Lyric started at 50mg twice a day then moved to 75mg. After a month with no pain reduction my doctor increased. Cymbalta was added at 30mg a day. After my last doctor visit since Lyrica and Cymbalta have had no help he wanted me to stop taking them. Now I am just waiting to have my MRI and from that I am under the impression he will prescribe something else. He does seem rather worried tho, with only being 28 and only having been diagnosed with diabetes six months ago. On another note does body temp seem to increase pain for anyone else? When I am in a cooler room it's not as bad but everytime I am in a warmer room my pain levels shoot up and the stabbing feeling starts all over my feet and legs. Thank you all for replying and giving me your input! |
For many people--
--increased heat and body temperature exacerbates neurological symptoms--heat is the enemy of smooth nerve signal transmission. (Nerves seem to work better in a moderately cool to warm environment.)
The multiple sclerosis people talk about this all the time--increase in symptoms with heat is well documented in MS, enough so that there's a big industry selling cooling vests and ice packs to that patient population. It's also an issue for people with peripheral nerve damage--although, for people whose damage involves the small, unmyelinated fibers that subsume the sensations of pain and temperature, any temperature extremes seem difficult--and if the damage is extensive, it may be hard for them to tell what the temperature actually is. As far as the meds you've been taking go, I'm sorry you haven't had more relief. For many, finding a med regimen that works is very trial and error, with multiple meds being involved for maximum effect--I know many people who take meds from both the anti-depressant (i.e., Elavil) and anti-epileptic realms (i.e., Neurontin, Lyrica) and do well with the synergistic effect. some even add in something from the opioid area to get maximum relief. And don't forget supplementation--such things as B1 Benfotiamine and Lipoic Acid have been used for symptom relief for neuropathy for a long time, even before a lot of the current drugs were formulated. They tend to have lower side-effect profiles, too. |
John, have you tried a cold pack on the back of your neck?
The larger gel packs are very handy. I use them often. The ones with gel in them are hard to find in drugstores now, so I got my recent ones here: http://www.amazon.com/3M-COLD-PACKS-...ds=3M+gel+pack I use them on my wrists, and neck and lower back almost daily. One 20 minute period is all that is needed to turn off the hyper nerve signalling. Our bodies divide up sensations and assign them to different nerve paths. The cold sensing ones have priority so stimulating them blocks perception of heat. You can do this with ice pack or chemically with topical gels you rub on like Biofreeze. This is a link to Biofreeze: http://www.amazon.com/BIOFREEZE-Pain...ords=Biofreeze Biofreeze is a professional "secret" that only physical therapists had and chiropractors. But now it has become available in other outlets thank heavens. It is wonderful...I use this on my feet and knees. I find the ice pack on the neck is good for global discomforts in the whole body. Don't forget you need that magnesium since you are diabetic. This is very important. The magnesium may fix some of your symptoms. You will have to space any magnesium away from gabapentin/lyrica...by 2 hrs before or after. Also I have to wonder about that diverticulitis...did you take antibiotics for that? If so which one(s)? |
On another note does body temp seem to increase pain for anyone else? When I am in a cooler room it's not as bad but everytime I am in a warmer room my pain levels shoot up and the stabbing feeling starts all over my feet and legs.
Yes I was the same, I hated the warmer months and just about prayed for winter to come along. If it does turn out to be the sugar levels that has caused the nerve damage, the most important thing to do is getting your sugar levels back down as close to non diabetic numbers as possible and watch out for any lows as well as they to can damage the nerves. The peripheral nerves do have the ability to regenerate, it is a slow process though. best of luck to you. |
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John Thank you for replying, Sorry you havent had a good response with your meds. I see you had the "better" repsonse with Lyrica. Did you have any withdrawal symptoms after stopping the lyrica? How are you doing on the r-lipoic acid? I havent noticed any diff with body temp. Guess Ill find out in a few months when the temps here start to go up (summer). So far the cold dosent seem to make a difff, The "monster" neuropathy sitcks its ugly head out at any given time or temp. Keep us posted on your upcoming results..good luck. |
I had my MRI today and had them put it on a disc so I could look at it and keep it in case I see a doctor that needs access to it. From what I can tell it looks all normal.
** ** I should have the results tomorrow, so I am hoping for the best! Marie33: I did not having any withdrawal symptoms after stopping the Lyrica. |
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Hi John Did you get off the lyrica slowly or cold turkey? I think I may have to stop taking it side effects from lyrica becoming to strong. Does ambien help you sleep? My Doc scared me , said he wouldnt dx ambien for me because I could sleep walk. :eek: You said you had Gastroparesis for a 2+ years. Itsnt that nerve damage to the stomach nerves and affects bowel and stomach funtion? Was that caused from autonomic neuropathy. I thought once you have it ,it doesnt really go away.. Best of luck with your MRI results!! |
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Gastroparesis effects the way you process food, it was kinda of like being full all the time. Only if I ate I would get really sick. Heck if I did not even eat I would get sick. It was not fun at all. Once I reduced the seizure medication I was on it went away for the most part. I still get really bad nausea a lot, but I am able to keep food down. |
Ambien is in the news now ...especially for women!
Doses are being lowered. http://neurotalk.psychcentral.com/sh...ghlight=ambien |
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Good for you no side effects from going of the lyrica cold turkey. Dont think I could be that brave or lucky. I will have to talk to my doc about the ambien at a lower dose. Are you saying the seizure med caused your gastroparesis or just made it worse.? Is your nausea/gastroparesis from autonomic neuropathy? Just wondern, been gettn alot of strange feelings in my stomach lately sometimes wonder if its the lyrica or something else....feel better!! |
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a number of years ago i was given ambien because i wasnt sleeping well at all. couldnt get to sleep, kept waking up,etc. well one night i apparantly made a spaghetti dinner, put away the leftovers and did the dishes all while i was asleep, i remembered none of it. last time i took it.
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Well good news is the MRI was normal.
In other news I have been having an electric shock like pain on my right face that seems to travel down. It comes on very randomly and hurts quite a bit. Is this common with neuropathy? Also my neurologist has no idea what is wrong so he is sending me else where. |
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Glad about your good news! I have sfn and I get shock like feeligs in my legs and feet but not in my face. I get pins and needles on my right side of face cheek and my mouth and my lips tingle. I beleive it is common with neuropathy. Fun stuff! what do you take for pain? |
Currently the only thing I am taking for neuropathy Elavil, the doctor removed me from everything else since they were not helping.
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I haven't posted for a long time. I've had body-wide neuropathy for about 4 years now. After Neurontin made me near suicidal, I went on Elavil. Elavil makes the pain much more tolerable, but most important of all, it enables to sleep well most nights. I started out at 10 mg and have worked my way up to 40 mg each evening.
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So far Elavil does not help with the pain I am on 50mg a night. Once I see the doctor next month ill see if I can go up to 75mg. I have been on tramadol before but this was before I had Neuropathy. It helps with minor pain. I did not have any issues with it. I was given Elavil at first to help me sleep at night combined with a max dose of Neurontin. Seems almost as of lately as if things are getting worse and not better with my neuropathy, can it actually get worse or am I just starting to go crazy? I have been having the electric pain in my left side and left leg most of today.
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no, i never took ultram. i took amitryptylene(elevil) for a few years and it helped with the pain especially at night. i have become much more numb since then and the pain has decreased, except when i stand or walk it always feels like im standing on broken bones in my feet. nothing touches that pain.
from time to time i take benedryl when my feet hurt when i lay down to go to sleep. i also use melatonin at night to get to sleep. i also use interferential therapy ( sorta like tens) in a divided foot bath. its the only way i can feel it. by the way i live on the same sandbar |
Hi there
I appreciate your post, as I can relate, and am learning from your questions and others responses. Regarding your initial question: elavil 12.5 mg at night for me in the beginning was not effective Lyrica seemed to help after 3 weeks, for about a month or two at 100 mg/day but then seemed to drop in its effectiveness against burning. However, when I missed a dose 3 nights ago due to falling asleep before I could take it, I suffered enormously for 2 days with burning everywhere. Now 2 days later I'm back to my baseline amount of pain Just got a script for 30 mg of cymbalta which I am totally reluctant to try since the last anti D I tried made me grossly ill and dysfunctional. But, I am willing to try everything. I don't want to hijack your thread, but somebody mentioned that LOW blood sugars can cause nerve damage? What! This is important for me to know, since I have had hypoglycemia for 20 some odd years. anyway, best of luck and update us soon with any news. |
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I also have had a horrible time with medication. I did find some relief with cymbalta and now I take tramadol long acting and it helps a little. I have accupressure done once a week and I am trying a completely natural diet. However, it has taken me 4 1/2 years to get to this point. I also read in one of your post that you are having light headedness. I had a lot of that when I was taking ambien. I stopped that and started Melatonin. I don't know if you have ever tried that but it worked for me. I also saw where you ask if you were going crazy because you felt the symptoms were worsening. You are not. It happens, at least for me. My symptoms kept increasing, starting with burning then stabbing and shooting pain, then electrical pains. It has settled down now, not too many new symptoms. I am glad your MRI is normal. Kim Kim |
[QUOTE=hopeful;949079]Hi,
I also have had a horrible time with medication. I did find some relief with cymbalta and now I take tramadol long acting and it helps a little. I have accupressure done once a week and I am trying a completely natural diet. However, it has taken me 4 1/2 years to get to this point. I also read in one of your post that you are having light headedness. I had a lot of that when I was taking ambien. I stopped that and started Melatonin. I don't know if you have ever tried that but it worked for me. I also saw where you ask if you were going crazy because you felt the symptoms were worsening. You are not. It happens, at least for me. My symptoms kept increasing, starting with burning then stabbing and shooting pain, then electrical pains. It has settled down now, not too many new symptoms. I am glad your MRI is normal. Hi Kim, I also have had a hard time with medications. I tryed cymbalta (30mg) and neurotin (100mg), they both made my anxiety level horrible. I am taking 50mg lyrica for 25 days now , with no pain relief. I know its a low dose but Im still trying to get used to the side effects. Foggy head, pains in my lower stomach (bad distention). You wrote you are taking tramadol. I have a script for tramadol. How much do you take and dose it help you? You said your pain has settled down ( I have the same nasty symptoms you listed) , Is this from your meds or are you doing something diff to help with your pain? Im glad your doing better! Marie |
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I have tried the anti-convulsant meds on your list but had severe mental confusion such that my patient record lists me as allergic to anti-convulsants; then onto plus a number of pain meds like Lidocaine patches (allergic to the adhesive), spinal injections, Fentanyl patch, Percocet, and even Butrans (suboxone) patch without relief and lucky me some of the nastiest side effects. Have tried Trileptal & Elavil, Valium and more. I am trying R Alpha Lipoic Acid 1200 mg for the last 2 months but no significant change. Read-up on Chronic pain and the use of pain medications. A very misunderstood field. Also be open to alternatives - yoga, exercise, meditation, etc. Be very diligent re controlling your diabetes as the only cures I have heard about are for some people with diabetic neuropathy and who seriously control their diet, monitor their sugar levels etc. I assume you have been tested for other causes like heavy metal (lead) poisoning, B-12 deficiency, trauma and a few other known or suspected causes. Usually a specific cause is not found. If the pain impairs your sleep, ask for medications to help. If you don't sleep, it impacts you in many ways. My mother's pain ended when her feet & ankles gradually become numb and then the problem was difficulty walking. My neurologist has noted a slight loss in muscle control & thinks I may also have restless leg so I am trying Mirapex - usually used for Parkinson's disease - to maybe take the edge off the pain (nada so far). And finally, ignore the ads that claim to cure neuropathy. And if you use Google or just about any search engine you will begin to see ads for neuropathy cures at every opportunity because they have learned your preferences and search habits. |
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What type of inherited neuropathy do you have if I may ask. Thank you. |
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I have severe peripheral neuropathy. Lyria on a small dose, was not enough. I moved up to 200 mg. 3x. Okay for a while, but I got worse. Then, in addition to the Lyrica 200mg. 3x, I started on gabapentin, now at 600 mg. 3x. These two together, keeps the pain level to a "3". This is the best combination I've found. Only side effect.... sometimes memeory issues. Hope this helps! |
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