Hi, my name is Victoria. I live in NZ and I am having trouble trying to see the right Specialist. I have had Raynaulds for many years and get chilblains all year round. I also have EM and IBS. 15 years ago I used to get the odd migraine but about 3years ago I woke up one day and I was getting them nearly twice a day to 4 times a week. I have had an eye test and have glasses as short sighted but still get them. My GP put my on 10mg of Amitriptyline. The dose was not helping and my EM was getting worse, so my GP increased my dose to 50mg. My GP sent me to Dermatologist who confirmed I had Raynaulds and EM and prescribed me with Doxepin ( I havent tried this yet). My GP sent me to a Sleep Specialist thinking maybe I had a sleep disorder that could be causing issues, and not getting enough air at night sleeping or brain wave could be having a knock on effect with the issues I seem to be having. I saw him yesterday and he said that all my sleep tests came back fine. I asked where do I go from here as I am right back to the beginning again. He said go back to my GP as he doesn’t know who could help in regards to the EM. I also have had a number of blood tests and they came back fine also. Apart from the health issues the biggest thing is my work is suffering. I have had so many sick days off for either GP visits and Specialists and tests done but I have also been in pain or been up all night trying to sleep because my knees and feet were burning. What doesn’t help is at work there are 3 main buildings that are separated from each other and the one I work in doesn’t not have running water or toilets yet (after 3years of protest these are being added but wont be until later in the year) but for me to get water or use the toilet I have to walk about 5mins each way. I know that is not a lot to walk but if its a -4degree frost at 7.30am or Im caught in a hail storm or even worse its 35degree heat, so that has a knock on effect also, as I am being exposed to rapid temperature changes from an office to walking outside. I feel I am being tossed around from DR to DR as I feel EM here in NZ is not well known enough.
I would love to hear what medications have worked or tips and what type of Specialists you found to have the most knowledge and knew how to help.
Victoria, welcome. See my earlier reply under the NZ thread.
Regards
Btw alert: it’s not usual to use both amitriptyline and doxepin at the same time as they are both tricyclic antidepressants even though they are commonly used for many other conditions. Or maybe that wasn’t the intention?
Talk with your GP before making any changes as this need rationalising- unless there’s a rather unique reason, you should only be on one at a time.
Although as a patient myself, I’m not here primarily to give advice as a GP I notice myself feeling ethically compelled to address potential “issues”
I have Erythromelalgia and Ehlers Danloss and live in NZ. Where do you live in NZ? I live in Feilding and saw somebody here and another in Auckland.
I have seen a specialist to get diagnosed for the pain and he put me on Gabapentin and Aspirin which works quite well for me. I also have a bed frame to keeps the sheets from touching me so I can get some sleeep. I have found exercise makes the burning legs worse.
Hi Stan, I checked with my GP and yes as you have said I only can take 1 type medication. So I am to half my Amitriptyline for a week then start the Doxepin. Thanks for prompting me to check.
Hi, I live in Christchurch. My GP has said I need to exercise as I have had high blood pressure for 2 weeks now. I showed him photos of me after some excerise. Bright red in the face like I’ve run a whole marathon, although I had just mowed the lawns for 20mins. I explained I can’t just do excerise and carry on, if I excerise I suffer for half a day with bright burning red in face, knees and feet. I’m trying to find something excerise wise I can do without the pain afterwards. Still looking.
Hi there! Swimming is the best exercise I’ve found, maybe that would work for you
My understanding is that doxepin is usually given for sedation/insomnia (at least what my psychiatrist told me when I was on it … though I don’t know exactly how it compares with amitriptline) so hopefully it will help improve your sleep. I really feel for you in not being able to sleep with the burning – I need medication myself to help me in that regard.
best wishes
Everybody is different and some have luck with Amitriptylin or other medications while others may react to it. I’m not a doctor or professional in the medical field and my mom has EM which is very bad and keeps her from walking more than 25 feet or so per day.
She developed EM from a medication called Risperdol which is a serotonin antagonist. Seven neurotransmitters are affected which can control temperature or blood flow by Risperdol. One of them receives an irreversible antagonistic effect from Risperdol. Well Risperdol or other drugs may be the cause for some nerve damage for some small percentage of EM suffering people which already is rare. If only 1 out of 80,000 people in the USA have EM maybe only 1/10 have it from drug reactions so it’s almost one in a million or so perhaps this is just my guess from what I’ve read here on the boards or in studies only a few seem to get it from q drug reaction.
Now one expert doctor in the field is at the mayo clinic in Minnesota in the USA there are maybe a few specialists in the USA who deal with this and one of them passes away a few years ago. There is test for those who have failure for most all pain medication which a few have tried and that uses a cream which is a mixture of ketamine .5 percent and amitriptyline 1 percent. Some report good results with the mixture of both but also some study patients or comments have said they feel a slight warming of their feet from the initial allocation of the cream which lasts for maybe five minutes and then the ketamine kicks in. Ketamine is an NMDA blocker which may help some people with rare CRPS type 2 pain issues also called RSD. It is taken in stronger doses on those patients and it’s an hallucinogenic drug like LSD or PCP. It was used at times as a way to knock out people when they were being operated in with grievous injuries because they go on a trip and may not recall the details of the operation. Rarely used by doctors for human patients it’s sometimes used in animals by animal doctors. One vet I know said they used to knock out cats at w local animal hospital with it and cats would be in a bad trip when coming out of the sleep with ketamine. This MD who doesn’t practice told me ketamine is too dangerous and he would never give it to humans.
Some people call ketamine horse tranquilizer and some use it to trip out and call it a ketamine k-hole trip that they are on. It may also be used as a date rape drug so it’s quite dangerous but if one is in a lot of pain with a really bad form of EM and never gets relief from things like pain patches and Norco one may want to find a way to get ketamine prescribed and try it.
Here’s what happened with my mom she tried the ketamine amitriptyline cream and had good relief but some bad side effects rapid heartbeat and other issues. We stopped the trial after a few days and she was off it while I studied the possible side effects of ketamine and amitriptyline. Wikepedia shows the side effects of drugs which affect serotonin neurotransmitters and Amitriptyline in an antagonist for six of the seven same neurotransmitter sites which Risperdol affects. In the same way so the cream it would seem with the low level of Amitriptyline will perhaps cause the same effects on my moms feet as Risperdol did in other words damage the activity needed to control blood flow and heat regulation. It’s not as bad as Risperdol but to me as a casual caretaker that’s bad enough to merit extreme caution. I’d venture and uneducated guess that the warming EM suffering folks feel from the mixture of the cream is from the Amitriptyline. So we tried another application of ketamine without the other drug ok the cream.
The second test which lasted a few days as well showed some promise as well and no side effects which were present with the Amitriptyline in the mix. So for my mom the Amitriptyline is something to be avoided. The ketamine cream was as good as a nerve block with a numbing agent which we also tried. It was four times more effective than Norco and fentynl pain patches which she took during the ketamine test. It will reset the system to opiods so it will cause an additive effect and also make you nor sensitive to future opiods in some cases so the ketamine cream on the feet is one of the last drugs of choice some may decided to risk trying. Doctors will be very hesitant to prescribe it and you should consult your doctor hopefully a neurologist before taking heavy duty drugs like this.
I’d say you should be wary and cautious in using amitriptyline. It may only hurt a very small percentage of EM suffering folks but if it did hurt you you should try to avoid it.
Some that is a very few on the board la here have had it make their symptoms worse or started their EM symptoms.
Everyone is different and the specifics of nerve damage can be widely different between patients with up to 100 types of neuropathy it’s easy to see someone could have a few types and possible be super unique in their own health response due to the strange mixture of damage to their system.
My mom also had a bad reaction to the pure ketamine cream with less control over her walking so she was not able to use that for pain relief alone either.
Hi Dene,
Who have to been to confirm your EM. I have found that EM is so rare doctors know nothing about it. You are correct that exercise makes it worse so be careful how much exorcise you do.
Do you get the electric shocks on your lower limbs? I find that is the worse pain as they can be so violent. Have you seen anybody regarding the pain if not ask to be seen by a specialist. My Doctor sent me to a pain specialist who gave me the Gabapentin
I really feel sorry for you but don’t give up. I also went to a Muscular Skeletal guy in Auckland who is doing a thesis on the Elhers Danloss for the government and he thinks they are connected. Have a look at BacktoLIfe and Fraser Burling. I think there is some stuff on his website about ED’s and EM.
Please let me know how you get on.
Regards
Iris
PS How do you manage at night
Hi. I’m sorry to hear about your mum and what she is going through. Thank you for your post including medication that has worked and not worked for your mum, it gives me something to study and look into and present as options when I find a good specialist.
I went to my family GP with photos I had taken when my hands were flaring up. They were so bad I had to stop typing at work as I couldn’t bend my fingers and then once they calmed down start typing again. My GP is great, he is on a medical board which involves other DRs from different backgrounds and they meet once a month. He’s very clued up with his knowledge. He was the one who first classed it as EM but didn’t confirm it until months later my EM got worse he sent me to a Dermatologist and he confirmed my EM. I have big issues with sleeping. On a good night I might wake 3 times but on a bad night easily 5/6 times. Always tired and run down and that’s when I get the migraines.
Thank you for your suggestion to look into med and Backtolife. All these posts are great, I’ve gone from knowing not a whole lot to having a lot to look into.
Hi Victoria
How are you going? Has the switch to doxepin helped?
Hi Stan, sorry in the delay been a bit happening personally. I saw the DR who agreed to changing meds but with what I’ve read and comments I didn’t end up taking. I have instead increased my dose of Amitriptyline to 70mg from 50mg. My GP has suggested my next step would be a rheumatologist. I’m not sure if that’s where I should be heading. With Winter coming I’ll have Rynaulds plus EM. Really not looking forward to that. Is this the direction I should go, or is there another direction?
Hi Vic (Dene301)
I was following your posts and it seems like you are really battling. Have you ever tried Lyrica (Pregabalin) I am also using Amitriptyline but only 10 mg at night. They tend to make you drowsy but your body seems to adapt to that after a while. It didn’t help on its own. The Lyrica really helps my EM. I started with 75 mg at night and after a month or so increased it to 75 mg twice a day. They really make you very sleepy for a while but luckily it gets better after a while. According to my intern specialist a dose lower than that will not really have any effect. I started taking coated aspirin as well, 100 mg once daily and that really works. The lyrica gave some relieve immediately but full effect comes gradually. My Intern specialist warned me that it takes 6 months up to a year to really help. I am taking it now for 7 months and is much better. Even started walking again, half an hour or more brisk walking. Only times that is still really bothersome is about 19:00 for up to 2 hours it flares but not bad and then it settles down most nights. I can even sleep with my feet covered for most of the nights. I was really having a good night if I could sleep for an hour without pain, my feet could not even touch the bed, had legs elevated without my heels touching anything! I really hope you can get something that will help.
Some people will develop EM as a side effect of amitriptyline or it may trigger symptoms. It will act as an antagonist on six of the seven 5HT neurtotransmitter sites which are affected by Risperdol. If you have flares taking Amitriptyline, or they are getting worse I’d suggest you may want to consider stopping that drug and talking to your doctor. Do a wikepedia search on the effects of 5HT or Seratonin sites for both drugs and notice many of the nerve functions that can effect blood flow and temperature thermal regulation are affected by these drugs. Risperdol in my mind is worse of a threat to perhaps (some) but this is from my non medical opinion. I’m not a doctor. . . than Amitriptyline. It however could be a rare side effect, perhaps extremely rare. It could be so rare that perhaps no other patient I’ve heard of other than my mother was affected by Risperdol.
In at least one study paper of Ketamine and Amitriptyline cream tests for EM some comments were made that some patients experienced a slight warming of their feet before the Ketamine kicked in. This made me wonder what was causing the feet to start to feel warm with that test? When I looked and saw that some people on this board have said they developed EM from the Amitriptyline I decided to see how it affected 5HT or Serotonin sites and low and behold it affects them almost in the same way as Risperdol does. This to me mean people who experience a slight warming in the tests are probably having their EM triggered even by a treatment method.
Each case of EM may be slightly different and react differently to different treatments, so you’ll have to have patience in trying different drugs and levels of dosage to find out what works best for your particular condition.