I’ve had erythromelalgia for almost 7 years. With numerous other medical conditions. My record shows they’re treating me for 45 conditions and that I’ve had 1250 Clinical medical appointments in the last five years. In horrific pain and now looking at a morphine pump or pain pump to alleviate the horrific torturous pain I’m in. Would appreciate any experience others have had with these devices. The pain in the feet spread to Hands, face and back, upper and lower. I have had epidurals, radio frequency ablation, blocks and tried endless amounts of drugs, With 16 drug allergies. Opioids and prednisone were helping me but are not reliable anymore. Oxycodin was a miracle drug for me for six years but now It’s no longer reliable.
You’re saying you’ve had the equivalent of a doctor’s appointment every day, Monday through Friday, for five straight years? Because 1250 appointments in that time frame is just about 5 per week.
Yes I am afraid that is what I am being told, a summary of Scripps and UCSD. Of coarse there are multi appts in a day. Plasmapheresis two or three times a week. Currently twice a week.
That’s pretty extraordinary. I’ve only heard of morphine pumps used for cancer, surgery or terminal illness. There isn’t a lot of feedback from community members when you search the forum using the words “morphine pump.” That’s likely because it’s rarely used for EM.
Also, don’t take this the wrong way, but if you’ve taken an opioid for 6 years, you have a chemical dependency. If lesser painkillers have stopped working, it’s not necessarily because your symptoms have worsened. The chemical dependency worsens the longer you take an opioid or opiate.
I have a friend of a friend who has one for 14 years because of major back surgery and says it’s like a miracle. There is a thread in the forum that speaks of the pump not only not helping EM. but actually making it worse in some cases (plural). That seems like a bold statement since I haven’t seen that much reporting on that pain pump and EM. I have on occasion been able to stop opioids i.e. oxycodone (80mga day) for a couple of days without any physical or mental considerations Simply because I had no pain and it didn’t even cross my mind to take anything.
For a little background I should mention that I have One of the gene Mutations for EM, and I have been worked up at the Mayo Clinic twice and have seen Dr. Jay Cohen a few times. It has also been suggested that I have some other Neuro condition going on yet to be identified affecting other parts of my body. I’m trying to figure out my options. Up until now oxycodone has been a lifesaver for me for six years, as well as prednisone. But the EM has gone to a whole new level of pain, it’s been difficult but it has gone to the unbearable. Any suggestions or insight you might have would be greatly appreciated.
Morphine is a strong narcotic. It was the first chemical alkaloid extracted from the opium poppy plant and has been around for centuries as an anesthetic. Heroin was synthesized from morphine in 1874.
Oxycodone, morphine, heroin, hydromorphone, hydrocodone, codeine, et al. are all either direct opium alkaloids or synthesized from opium alkaloids. They all come from the poppy straw plant. Some are more potent than others, but they’re all opium. You’re basically asking which opium is the best.
First let me thank you for your help with my predicament. My interest is not in the strongest Opoid but what options I have with treatments. Whether it’s ketamine treatments, IV lidocaine treatments (seems to be popular in the UK), spinal cord stimulator surgery, Methadone etc. IVIG infusions worked for me for a couple of weeks then suddenly stopped working. Fentanyl patches 75 mcg did very little for me. Do any of these options seem good to you? Or at least a reasonable way to go forward?
I’m not sure i’m qualified to say what is best. If you haven’t tried intravenous lidocaine, I would definitely give that a shot. It’s very surprising Fentanyl didn’t work for you, considering its potency. Is your pain primarily from erythromelalgia or another condition?
Hi Bottner,
I’m sorry you are struggling.
Fwiw, I just visited one of my doctors and had a heart to heart on what options I should pursue next. I told him I am really willing to try anything if there’s a shot at it helping my life. Discussed nerve blocks, ketamine, IVIG, lidocaine iv’s, etc. He said he is a fan of the lidocaine iv for EM and even other chronic pain conditions as it has a unique ability of resetting the neural pain circuits and targeting sodium channels. I am not sure about fentanyl, but he said sometimes people “need” a lidocaine iv first if they find they don’t respond to mexiletine (oral lidocaine analog), lidocaine patches. He said that other things like nerve blocks, opioids, beta blockers, etc don’t get to the “root” of the problem like the lidocaine iv can (although they might be worthwhile for symptom management)
I responded so-so to a 1 hr outpatient iv. Temporary anti-pain effect (under a week) and told him I thought maybe it wasn’t for me, since I didn’t have the same dramatic response I know some people can have. He said the dramatic response (where people are off and running again, eg) is not typical at least from what he sees and it might need time (more freqeuncy/duration) in my case to reset.
Anyway just passing that along, in case some of that is useful at all to you. I really trust the opinion of this doc and think he has been spot-on so far with me.
I think there are a few active members on the facebook EM group who have tried pain pumps. And at least one member in the yahoo EM group
Best wishes
I would say it appears that my pain is mostly from Small fiber neuropathy and small fiber polyneuropathy. The Mayo Clinic has reports that I’ve seen associating EM. with 50% and this high it’s 92% of EM patients. So to answer your question as best I can I would say most of my pain is EM related. However recently there are reports saying that small fiber polyneuropathy may be a separate disease. What I’ve seen is that it is associated with fibromyalgia, which is also a diagnosis I have.
Let me also thank you as well as the information and your input can be very helpful to me. With 18 allergies to medications you can see I’ve tried many options. The mexiletine which I found in a small study in France to be very effective for my specific gene mutation Did not work for me and to which I had numerous side effects. I am desperate and willing to consider anything.
Well let me advocate for CBD oil. I just started taking it (in addition to my Cymbalta and Lyrica) and I’m shocked that it’s actually working. Not just covering the pain but outright stopping flares where I otherwise would have definitely been flaring. I have many conditions as well, Ankylosing Spondylitis, Crohn’s, and EM. The first thing I noticed was my back didn’t seem to hurt as much and I found I wasn’t even taking my Tylenol 3s or at least only a few at night. I went strawberry picking for 4 hours with no problems, my back didn’t even hurt afterwards and normally I’d have been dying from all the up/down/bending. Then I came home cleaned all those strawberries and made Jam, standing on my feet for hours and after I water bathed the jars, I thought, Hmm…I haven’t thought about my feet once. I’ve only been taking it for about 11 days. I can’t wait to see where I’m at in a month, then two, etc…
If you want me to say I’m addicted to my Tylenol 3s because I take them every day, then I will. I’m addicted just as much as I am to the cream I must put on my feet several times a day, and the Nexium I must have for my ulcer, etc. Does that mean that people that deal with chronic pain should just suffer. If I didn’t have them, I wouldn’t be able to get out of bed in the morning and that’s not the addiction, that is my AS. I know some of it is the addiction though, I’m not in denial. But even if my body wants more, that doesn’t mean I’m going to take more. I’m tired of everyone treating me like I’m a heroin addict looking for my next fix. I never take more than I’m prescribed, never have never will and I will never become a heroin addict. Drugs like Tylenol 3 and Tramadol are not freaking gateway drugs. Even my Dr. told me that the opioid addicts are just going to heroin now since they can’t get the pills. I don’t see how that is better.
I’m just amazed at how stupid all the new government regulation has gotten. I had to pay $100 to go see my Dr to sign a Narcotics contract (federal requirement), then the next month I have to pay $100 again to go see Dr. to sign a state required form. The only one making out here is the Dr.
But seriously, if you haven’t tried the CBD oil, I highly recommend it. Especially if you are taking opioids. It will help you get off those too or at least lesson how much you need. Do the research.
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Hi jswilcox2 -
I’m curious if you use the CBD topically or orally?
Thank you! And glad you have found a combo that seems to work for you!
I use it orally. I can’t believe the difference it has made and others say it continues to work better over time. It will be two weeks Monday since I started. I’m not flare free but I only cold soak about 1/4 of the time I did just two weeks ago. I’m not taking as many Tylenol 3s either. I can do things I never would have done before. I’ve actually started cooking again. I did some canning. It was hot and humid today and I was outside working in my flower beds from 9am to 3pm and I wasn’t thinking about my feet every second. That is probably the biggest difference, that no other drug has been able to accomplish. I don’t think about my feet AND unlike all the other drugs, it’s not just pain relief, times that were an automatic flare, aren’t anymore or they flare is fairly minor… All I can say is I’m very happy with the results.
I’ve only told my Rheumy that I started taking it. He didn’t really offer an opinion one way or another but he did ask if I thought it was helping. I plan to tell the rest of my Drs. but honestly at this point, I don’t really care about their opinion on the matter. , I’m surprised at the positive reactions I’ve gotten from everyone I’ve told. I haven’t gotten one negative response. Most of them just want to know if it works because they want to try it for their condition. Even my parents were supportive. I think people are finally getting educated about the matter. I sure hope you find a solution. I I would seriously think about trying it. You have to watch where you buy it though. One of the other EM suffers from the group recommended Natures Love. That is where she gets hers so that is where I got mine. They have some on sale for $28/bottle (if you buy the tincture) which is a really good deal since they are normally $40/bottle. Check them out but do your research first. Good Luck!
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If you haven’t tried lidocaine infusion that would be were I would start. Lidocaine is a predictor for Mexiletine. Most people who will respond to lidocaine can sustain benefits with a PO form called mexiletine which shares some chemical similarities. Also there have been some clinical articles where people had no response to morphine for EM and where transitioned to lidocaine. I think it’s worth looking into . I believe a lidocaine injection must be done in a hospital setting like a ICU becuase of the drug class. I hope you can find something that helps
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I am so sorry you are having so much pain, I understand what you are going through. I have so many medical conditions and it’s frustrating. I have been on methadone since 2008 and it helps with my pain. You won’t need to increase your dose like you have to with opiates, you don’t feel high if you are at the correct dose, everybody needs different amounts to be theraputic. But it is one of the hardest drugs to wean off, so keep that in mind. For me I am okay with being on it the rest of my life and at one time I was almost off the methadone and then em took over and my pain was bad so bad so I went back up on my dose and it has helped. But I take gabapentin, cymbalta, amitriptyline, and methadone daily and I also take hydroxyzine when I am itching or nauseous. I use lidocaine, biofreeze, or voltaren as a topical med. I really hope you get some pain relief
Thanks for your input, I find it very helpful. Unfortunately I am allergic to gabapentin, cymbalta, amitriptyline. Oxycodin has serve me well for the last few years, but it is now failing me in a big way in that it’s requiring much greater dosages. Plasmapheresis which I do twice a week seems to help but I do need more pain relief. My autonomic system is totally messed up with severe SFN. So I I am considering methadone, pain pump, lidocaine IV drip and ketamine treatments. What are your feelings about these options?
Out of those treatments I think methadone has the least side effects. I stay at the same dose for a couple years and have gone down and up depending on something happening in my life health wise. But I have been steady for about two years now with the em. I know IV lidocaine is really bad on the heart. Pain pump is an extreme measures, but it might be right for you. When you say ketamine treatment do you mean taking it orally or topically. I have heard quite a few people say that the topical ketamine is their go to for topical meds, my insurance refused to pay for it so I don’t know personally. I don’t know much about ketamine. I would look up the side effects of each treatment and write down the pros and cons. Methadone can cause weight gain and sweating, just don’t give in to too much sweets. Don’t try to get to a high dose right away, you want to be at the lowest possible theraputic level, one dose will last you 24hrs but actually has a half life so you wouldn’t get sick for 2-3 days if you missed a dose. I have to go to a methadone clinic where I drink liquid, I originally got on methadone to get off opiates and now I stay on it for pain, I know if I get off I will end up needing pain medication and I can’t risk that again. If you have any questions let me know. Good luck, I hope you get some pain relief. What country are you in? I have to have a fan blowing on me at all times, I start to flare up if I don’t. I will flare with a fan too but not as bad. I use peppermint lotion on my feet and hands for smaller flares, even suburn pain relief with aloe and lidocaine can help a bigger flare. Have you tried biofreeze?
Sorry it’s taken me a few extra days to respond but they have been difficult days. In fact I had a severe shortness of breath issue, my primary care wanted to send me to the emergency room. That issue has gotten better. Possible drug side effect. In regards to ketamine, I am referring to oral or IV administration. The latest research I’ve seen has shown it can be very effective for chronic pain situations. What’s involved in going to a methadone clinic, and how often do you have to go, every day? For me opioids have worked very well , I don’t seem to get addicted, and if it wasn’t for the recent tachyphylaxis it would still be a great tool for me. It removes the painful numbness in my feet, the stomachaches that I have on a daily basis, increases my energy levels, etc. I have not tried biofreeze. My feet no longer get hot but rather either freeze or go numb with pain. In fact my feet no longer get hot but rather either freeze or go numb with pain. In fact they don’t get really red any more.
No worries, I am sorry that you have been having a rough time. I know exactly what you mean with the cold and freezing pain. My em started in my hands, and it was just intense burning that eventually spread up my arms, my cheeks, mouth, tounge, and ears. Then vaginal flares plus it has made my IC a lot worse, and my feet flare up here and there during the day but it’s the least severe of my flares. It was mainly burning the first two years and I was really looking forward to winter but instead I would go from ice cold and purple to burning red. It’s my new normal and the pain is always there, it’s one extreme to the other. Because you are not a addict you would have to go to a pain clinic if you are in the US. I am not positive if it’s different by state. I went to the methadone clinic because of an opiate addiction but have stayed because of my pain. When you first go to the clinic it’s 6 days a week and then after 90 days you only go 5 days a week and then after another 90 days it’s 3 times a week and then so on until you only come in once a month. If you are interested in methadone talk to your PCP. The problem with opiates is that a tolerance is built up and then you actually start to feel sick if you don’t take more. That’s how I got addicted because I was having so many surgeries for kidney stones in a short time period. Definitely go with what feels right to you. I personally think methadone is great for pain. There is another em site called erythromelalgia warriors and have talked to people who have gotten on methadone because of the em pain and are happy with it.