What do they do for EM pain? I haven't read anything that works other than pain meds which I know help. Trying to get a doctor to treat you with a monthly script for percocet is like trying to pull teeth. My doc will not do that even though I have been going to him for 6 years about this issue and he knows Im in severe pain during flareups which happen daily. Its almost like living in the twilight zone because Ive known people who have gotten pain meds for years because of back issue etc. This is one of the worst pains to deal with and I cant figure out how to get the damn meds, the pain management places my doc told me about want big bucks and dont give pain meds out, they want to "treat" you. AGAIN, what treatments will work AFTER you leave? They might do stuff there that takes pain away ie: epidural but when you leave then what?
One thing that has helped me is TENS - Transcutaneous electrical nerve stimulation. Not expensive. Tens is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes. Use by chiropractors and available to the public online.
Jimm, Sorry to hear you are caught up in the over correction many MD's are participating in as a result of the opiate addiction epidemic in the country. It is unfortunate that because of the actions of some, the rest have to suffer. Have you considered changing Drs? There are some that will still prescribe narcotics for their patients who have a legitimate need. Some have even taken the drastic step of having their patients sign a contract agreeing to not abuse the medication and some other stipulations. I understand that some Drs. are scared to loose their licenses if a patient overdoses or if they are found to be prescribing too many narcotics. The DEA is cracking down on the Drs. and also the pharmacies. I just learned yesterday from my pharmacist that the DEA allows them so many pills per month. When they run out, that's it. They cannot order more until the next month. I went to have my prescription refilled and they turned me away because they were out! This hurts their bottom line and I had to run around the neighborhood trying to find another pharmacy to fill my LEGIITIMATE PRESCRIPTION! How is this helping with the epidemic? From where I sit, it is not doing anything but hurting the pharmacy and the patient who has a hard enough time walking and now has to find somewhere else to go. I could not function without my pain meds and I feel for you. Try talking to your Dr. and ask him to refer you to someone else who will prescribe the meds you need. It is bordering on malpractice for him not to treat your pain or refer you elsewhere. What does he expect you to do? Good luck to you.
When I was going to a chiropractors for my neck issue I told him about my feet, the therapist they used to do the ultrasound massage also used electric pads they put on certain areas of my neck/back, they would turn it up to the point that was uncomfortable, then turn it back a touch. I asked them to put one on each foot, they did that a couple of visits but it never did anything.
Fixme said:
One thing that has helped me is TENS - Transcutaneous electrical nerve stimulation. Not expensive. Tens is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes. Use by chiropractors and available to the public online.
Im telling you its horrible, my doc is scared to lose his license, Im in So FL, home of the pill mills, seen so many busts on TV, hell, a guy I trained with MMA was a cop, he did the undercover dealing with these places, people were comming form out of state, some would sell pills as the came out of these clinics, many were snorting the pills in the parking lot. These JERKS screwed it up for us, people who need these meds because of excruciating pain. The junkies use every excuse in the book and give heart felt BS to get them so its hard when a person like me is looking for these meds because they look at you like a BS junkie I guess. I need pain relief, the tramadol that I take barely makes a dent in the pain.
Shih tzu Mom said:
Jimm, Sorry to hear you are caught up in the over correction many MD's are participating in as a result of the opiate addiction epidemic in the country. It is unfortunate that because of the actions of some, the rest have to suffer. Have you considered changing Drs? There are some that will still prescribe narcotics for their patients who have a legitimate need. Some have even taken the drastic step of having their patients sign a contract agreeing to not abuse the medication and some other stipulations. I understand that some Drs. are scared to loose their licenses if a patient overdoses or if they are found to be prescribing too many narcotics. The DEA is cracking down on the Drs. and also the pharmacies. I just learned yesterday from my pharmacist that the DEA allows them so many pills per month. When they run out, that's it. They cannot order more until the next month. I went to have my prescription refilled and they turned me away because they were out! This hurts their bottom line and I had to run around the neighborhood trying to find another pharmacy to fill my LEGIITIMATE PRESCRIPTION! How is this helping with the epidemic? From where I sit, it is not doing anything but hurting the pharmacy and the patient who has a hard enough time walking and now has to find somewhere else to go. I could not function without my pain meds and I feel for you. Try talking to your Dr. and ask him to refer you to someone else who will prescribe the meds you need. It is bordering on malpractice for him not to treat your pain or refer you elsewhere. What does he expect you to do? Good luck to you.
Jimm, I am really sorry to hear you are having the problem of getting the pain relief that as a human being you are entitled to. It really bothers me that they wouldn't let a pet -- your lovely family dog, for instance -- be in such pain without doing something to help and yet humans can be left to suffer. so many societies have trouble extending their humanity to their fellow humans.
I'm in Australia and I take low doseage of opiates every day. I have to jump through a few hoops to get my pain meds. I deliberately keep myself on a low, and not strong enough, dose because I fear one day the wheels will fall off the system I have in place -- seeing the head of a big hospital's Pain Management clinic every 12 months who then writes a letter to my GP who then doles out a prescription for a month's worth of pain meds and I get to pay the gap payment when I see the specialist and when I see the GP there's the gap payment there each month -- which all adds up -- as well as pay for the meds, of course. I also get to sit on some dinky chair once a month in my GP's waiting room, usually in pain, and wait for my turn. It's like I'm being punished for having pain. But at least I can get the meds. I've been very careful with them -- never asking for an increased dosage although my pain has gotten worse. And have been a totally compliant patient for 7 plus years. Yet, I still get to jump through those hoops. On December 18th last year, the day my Father died, I was by his bedside when he passed away. A of couple of hours after he died I had to leave his bedside and go to my pain specialist's appointment so that he, in turn, could write to my GP so they would continue to prescribe the meds. Seems extreme, doesn't it? And even my pain specialist said I didn't have to be there. But because my GP was new to me at the time I actually, really, had to be there. I explained to my pain specialist that I couldn't let the wheels fall off my pain medication bus. Because my GP would never have prescribed my usual meds without that letter from my Pain Specialist. He's very aware of the doctors who don't prescribe pain medications when they should. He travels the country attending medical conferences explaining why it is important for doctors to treat pain. I don't think he realized until that day, when I turned up after my Dad had died, that it's a job to get pain relief, even from him. But at least I can get them Jimm, which is much better than your experience.
What would I have done if my father had died a couple of hours later than he did? Would I have left his bedside to go to see my pain specialist? Probably. Because we knew my Dad's time was up. And I had to be able to do all the things you need to do when your Father dies. And I needed the continuity of the pain meds. It was almost Christmas time. Doctors close down. If you aren't on top of these things it so easily all falls apart. They certainly don't make it easy. They shouldn't make it too easy. But really, do they have to make it so damn hard.
I'm still much, much luckier than you Jimm. But, I have to stay organized and on my game even feeling like death warmed up, or burned up, in my case, and with Daily Migraine. All thanks to some wimpy doctors who are not brave enough to do the job they are trained to do. Essentially, they took up room at medical school only to let a few politicians and beaurocrats dictate to them their approach to pain care. As my Pain Specialist has told me, freedom from pain wherever it is possible is a HUMAN RIGHTS ISSUE.
blue....who has experienced censure from family, friends and many medical people for taking opiates. And who can only wonder at what degree of censure people that need much higher dosages of the stuff have to face every day.
Hi Fixme,
A TENS is an interesting idea. Where do the pads go to help your feet?
Fixme said:
One thing that has helped me is TENS - Transcutaneous electrical nerve stimulation. Not expensive. Tens is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes. Use by chiropractors and available to the public online.
I am sorry Jim you are left to suffer so much. It is very difficult to get the help you need . My doctor wouldn't prescribe me any pain meds because of the laws surrounding them now but did refer me to a pain clinic. I have been going there for te past 3 plus years. I had to sign an agreement with them stating I wouldn't get any pain meds from anyone else and in a emergency situation the ER doctor must first contact them before prescribing anything. I have to go to the same pharmacy and they have permission to monitor my scrips I have filled. I have to see them once a month every month for over 3 years now and get random drug tests to ensure I am not abusing them.
That said it has been a huge help even with all of the hoops. Not only am I prescribed morphine to help with pain they have also helped with other EM meda such as gabapentin and lyrica, They have recently given me lidocaine infusions amd Mexiletine to help with pain as well as cortisone injections and massage therapy. They do so much more than just prescribe a few much needed pain pills. There are some surgical possibilities we are saving as a last resort but they are willing to do such as a Neuro spinal stimulator implant. He says it is a battery and computer implanted with leads that go into the nerves and spine. It send off a gentle buzzing but not painful sensation that should mask the pain sensation. Each nerve can only experience one sensation at a time so the theory is give it a different non painful stimulation so the pain signals can't travel the same route. This has been known to help with other neurological conditions but there is no info on it being used for EM. It is quite invasive as it is major surgery that has to be repeated every 5-10 years to implant a new battery or adjust the position of the leads so it is definitely a last resort but at least I have my pain clinic willing to do it if need be.
I suggest you do some research and look at patient reviews to find a decent pain clinic and give it a try.
I hope you are able to get the help you need.
Take care,
Alina
Hey Jimm,
I’ve had migraines for 25 yrs and have a neuro who’s also in pain management. A year ago I developed EM in the palms of my hands. They are red and it feels as if boiling water has been poured over them. I’ve been to 4 different mad & couldn’t get diagnosed. Started doing research and KNEW I had EM. When I mentioned the disease to the first 2 Drs. I got a demeaning roll of the eyes. Last month I discovered the EM Doctors list and have FINALLY received my formal diagnosis.
Could you make calls to the pain specialists before going to ascertain if they have even heard of erythromelalgia? There’s no cure and we’re just trying to get the fire under control enough to live a somewhat normal life.
My pain dr gets angry with me & even yells saying I’m just stubborn when I have to discontinue a Med due to side effects. He does, however give me Hydrocodone for the migraine pain which has made life tolerable. I take them judiciously because of side effects.
So back to your question. For immediate relief its 20mg of HDC for me. I’ve been started by my new EM dr on a very low dose of gabapentin and if I don’t experience side effects he plan to increase the 100mg up to a possible 3000mg gradually.
Ice packs are my best friends. Just a thought, if you have a good relationship with your pharmacist, you might ask him or her if they can give you the name of a pain Mgt dr who’s not afraid to prescribe the proper meds to their pain patients.
My heart goes out to you. Flaring every day is a nightmare. Every once in a while I get a day or two off. Wish that for you.
Have done extensive research on foods & SUPPS that are vasoconstrictors ( i.e. Coffee!) and learned the hard way the spicy foods and alchohol are vasodilators. No more dirty martinis for me.
My goodness I’ve run on re your simple question. Good luck. Your pain pal, Patricia
Hi Jimm,
Just wanted to let u know you’re in my thoughts. Am hoping you’ve made some progress in getting control over the pain. You’re not alone. Interesting fact… There are 7,000 orphan diseases and erythromelalgia affects only 13 people out of 1,000,000. No wonder it takes forever to get diagnosed.