after a few years of taking tramadol I stopped using it, my doc was saying he doesn't want to issue it anymore and to see a pain clinic. I would still feel pain during flareups but the tramadol seem to keep me from waking up during the night, long story short after coming off the tramadol I found out I have two issue. My feet were in deep pain at night, could not sleep at all with the pain and the could ice water didn't seem to work. I realized I may have a small fiber neuropathy. When this 1st started it was more of an issue with a toe feeling wierd, like a numb feeling, when I had tests done like the "can you feel this" type stuff I could feel something touching my toe but still had a weird sensation like my sock was bunched up in my shoe, this weird feeling slowly started to effect my toes on tboth side and after 6 months or so is when a slow pain crept in, after a year or so is when the heat pain started, so basically I didnt realize I developed erythromelalgia along with this neuropathy. Please note, this is my diagnosis based on thousands of hours of research, doc seem not to know much. anyways I asked for neurontin and it seems to work like tramadol for the nerve pain issue but like doesn't do much for the erythromelalgia. It helps me get some sleep which is important, at this point the only thing that works for both is percocet but its a btch to get.
My mom suffers from a bad case and we hope to try Mexiletine Oral lidocaine soon. We are also going to try an experimental block to the tibial nerve on both sides soon for her. That may lead to other experiments with treatment via that sensory nerve. Everyone with EM may have different reasons for their EM which could be genetic or could be some other reason. Each patient will respond differently to different drugs to reduce the pain an swelling and flares. Some may only respond with a moderate decrease in pain and symptoms and just have to deal with it as it shuts down their living options.
It's a good idea to see a pain clinic or a neurologist, both can give you heavy duty drugs and treatments for your EM. Many doctors will shy away from increasing drug dosages or giving heavy duty drugs for long periods of time because they are conservative and fear lawsuits or side effects. They may not be as experimental and take as many risks as the doctor you might need for the chronic pain or rare pain issue you are hoping to get relief from.
We have seen over 30 doctors in the past 14 or so years with my mom's EM condition. She has had other conditions as well, but nothing like EM.
Some medications that work well for some with EM don't help or make things worse with others, so your case will be different than others. . . about the only thing that seems to be the same, is each EM case is different.
My mom had no luck with tramadol which is one of the first drugs many doctors will try on EM. The patient has to have patience, with the doctor process, because the doctor may not make an adjustment until the next appointment which may be a month away. That's really difficult if you start experiencing a ton of really painful flares, which is what happened to my mom. She got a really bad case of what seems to be one constant flare, that gets worse and rarely better. She could get relief by freezing her feet in cold water at first, but that took it's effect on the feet and that was only temporary, as the foot warmed up the flare returned. It seems that mom got hers from a drug reaction that may have damaged her nerves in some way, but of course that is just our major suspicion based on what we saw in her case. Each case may be far different, with different forms of damage or symptoms. And mixed symptoms of course can happen as well with different factors. For example it seems some have EM flares but they may have mostly numbed feet much of the time and a cold form of neuropathy for lack of a better term.
Don't burn the bridges to the old doctors even if they are very conservative and can't seem to help you now, they may be useful later for some ailment or you may need to return to them for help from their perspective. But if a doctor doesn't want to help, feel free to move on, it happens a lot with EM patients especially when they are starting out.
In my mom's case some doctors said, we can't treat you and bowed out with grace. They knew it was to much for them. Others thought they knew what was wrong and figured they had a quick cure. Which of course didn't work, so they were a short blip in her history.
Mom saw a large group of hospital doctors and interns in one of her many visits to a hospital. She had many look at her and they went over her tests and had some battles as to the diagnosis and treatment. That was interesting.
Mom tried tramadol, Neurontin, Lyrica, Vicodin, Effexor and Cymbalta and none of them worked for her. But some of them work for other EM patients so this is just a comment about results for my mom. She claimed Cymbalta helped some with the pain but side effects to her mind are to great for large doses and it really doesn't seem to help her pain as far as we can witness, it may somehow alter her brain chemistry and change her focus off the pain or do something in her mind, but it does not free her to walk around more with less flares or anything dramatic. Her Neurologist thought he would keep upping her dose of Neurontin to a huge dose and cure her nerves, it was worth a try. And we figured why not try it, we need someone who has to guts to try new things for this rare and hellish disease/syndrome. But the Neurontin caused her to lose sleep and start to hallucinate. So that was abandoned.
The side effects of some of these drugs can be rather dramatic and may prevent them from "helping". She had some decent results with oral morphine, but we had to go to a pain clinic to get the prescription refilled, as doctors we were seeing would not prescribe that drug. That pain clinic was in Detroit and my mom and dad had to many problems getting to the appointment and I worried about their safety visiting the clinic in Detroit, so Oral Morphine was abandoned. Vicodin helped a little but not enough for her, but as the neurologist started adding more pain killers we found some moderate or perhaps minor relief, enough so she wasn't suicidal. She has a really bad case as you can tell from this last sentence.
Her pain went down from an almost constant level 10 flare to a level 7 pain and flare issue. Her feet or pain level is almost always at 7 now, which is a three point drop from constant hell with ten all the time. She takes Norco, which is a replacement for vicodin and a fentynl pain patch 50mg every three days for the patch. The pain patch is something that might be worked up to for those who have it really bad. Because it's really heavy duty, more powerful than Morphine. So she takes these currently. She tried Percocet and that did nothing for her as well. It didn't touch her pain.
My mom also takes other pills which are for secondary conditions which may have resulted in the strange and difficult pattern of coping that evolved to avoid flares and avoid having to walk as much. These secondary compensations, like compensating for an injury can cause further secondary problems, not related to the main problem, but are caused by the way you cope and things you may do to avoid the pain of walking. I won't go into all that. She also has a very restricted diet as many substances and even stress excitement and anything that gets her to excited may trigger a pain flare. Salt, sugar, spicy foods, are all pretty much off the list. A very boring diet. Over time she has reintroduced some things slowly into her diet as a special treat to keep her diet from being so boring. But these things often have a kind of "pain cost" that she can weigh to see if the treat is really worth the resulting flare.
There are a number of tests that can be performed. For small fiber neuropathy, a hospital or pain clinic may do a test and some doctors offices may do this as well. It's a punch skin biopsy. They may do this to sample a small plug of skin from your foot and they will look at slices of the sample and look for small nerves in these and count them to see if you have the average number a healthy person would have. If you have that number that seems to be normal you will likely be told you don't have small fiber neuropathy. If you are missing small nerves you will be told you have it because the nerve count is low. This test in one study had an 84% efficiency in providing the correct diagnosis. Also there is QST testing that can be done by a neurologist. It will have a 48% efficiency if it's like the tests performed in one study. That test tells you if you have small fiber neuropathy based on tests the doctor gives you to see how your respond to certain sensations during the test. It takes about an hour to take that test. Those two tests combined are considered the gold standard. I read somewhere that a microscopic test can't tell if one has SFN, but that may be in relation to a Neurological condition where something is attached to the small fiber nerves and the damage can only be seen using an electron microscope. That may be not important and may be not as important for your test, a clinic or those giving you the tests can verify and fill you in on the details of the test. Large fiber neuropathy damage can be tested with Nerve velocity studies. That involves small needles and signals being sent and measurements taken. It sounds like you may have had that test, already.
There are other tests. But some may be avoided and not even necessary. I had my mother tested for RSD. They gave her a sympathetic nerve block in the spine to one side for one of her legs. To test to see if pain signals were going through the sympathetic nerves. Some patients with a sympathetic block have found relief from EM. In the case of my mom's test, the test was to see if she had RSD which is a different disease. The pain clinic doctor who saw my mom felt she didn't have RSD from his observation, as he saw more than one RSD case. He said my mom's condition wasn't as bad as an RSD case. I found that amazing, and probably true. It was hard to imagine someone with a worse pain condition than my mom. Because when she had bad flares at the beginning as I've said to some, I knew it was bad when she asked me to kill her. When you have enough pain, and that is for severe cases that you are seeking Dr. Death, you know you case is a really bad one. Of course over time hopefully most cases even the severe ones can find some relief if not a cure. For many EM patients they find a dose of medication that works best for them. For patients like Carter who find out that the sodium channel blocker restores a lot of their health and they get virtually no flares, WOW all I can say that seems like a miracle. It may not be a cure, but it sure can restore a lot of the life you would have lost.
So all these different drugs and approaches may be worth the pursuit. I'd give the Mexiletine a chance early on if you can get a doctor to try it. Having a drug that helps you now should give you a base of some relief to work from as you may work through other meds that hopefully will help you even more.
Sometimes an added drug to the mixture can show interesting promise or help a lot as well, and doctors will not often change a lot of drugs at one time. Sometimes in our case we have tried to switch drugs and get off the older ones that seemed to work "marginally okay, giving a little bit of relief", but the new drug did nothing at all and gave bad side effects, so we would abandon the new hopeful wonder drug and return to our basic treatment that provides at least some level of relief.
Some drugs may also be added or prescribed for side effects that happen of course as you're disease changes or others thing happen from it. Hopefully it will change for the better or you'll find a really stable and mild form of the disease that is very treatable for your condition. My mom for example has high blood pressure issues which can often be related to the pain of a flare and the heart is responding to pain and flares. The blood pressure can cause flares and visa versa, but we have found cold water or ice pack chilling of a flare can reduce blood pressure without the drugs quite a bit. We still use the blood pressure pills. And in my mom's case the syndrome seemed to affect her normal blood pressure. She used to have a very low blood pressure with a normal active life. Now her resting blood pressure is much higher, and ironically when she gets the greatest relief, sometimes with very cold and chilled feet and good drug mixtures. . . her blood pressure will return to a really low level, much like it was when she didn't have the disease. To some doctors who are conservative a really low blood pressure is a bad sign, because it seems the persons CNS system is depressed to much and they may be so drugged up that they are on the verge of collapse. So some doctors will be very wary of drugs that hit the system to much or make you to drowsy and sleepy. That's more or less natural and understandable. Sometimes I wonder if under really heavy drugs, but we are not usually even close to the most drugs mom took. . . I wonder if those heavy drugs are almost taking her down so much, that the blood isn't flowing much and the heart isn't working much, because the pills are suppressing the system so much. And the symptoms of EM can't happen because we are literally taking her system down very far. The blood pressure readings of some, for example one medical professional I talked to can be low and low compared to the norm. I talked to a pharmacist who told me her normal blood pressure was 90 over 60. If the blood pressure is below 80 or 70 you may not even be pumping blood when the heart is not pumping. A low blood pressure like 70 over 50 could be a sign you're on your way out because blood isn't even being pushed through when the heart is beating properly. So obviously people with "normal" low blood pressure who may find themselves with high blood pressure, may find doctors nervous if their blood pressure is returning toward their old healthy norms.
That's about it for now. . . as usual my posts are often a bit to long and I don't tend to proofread and shorten them much so forgive the typos.