I'm finding with this latest flare up that my anxiety is worse than my EM. It wakes me at night and I feel panicked whenever I feel my foot burning. I've had a bad year with other issues and I think this recent flare up was the "straw" for me. It's been manageable for 1 1/2 witout any meds.
I'm scared to try the meds for EM because of all the bad side effects, but think I need something for the anxiety. Any suggestions of what's worked or not?? I've used Amitriptyline in the past and it's helped my feet, but even at 10mg I have issues with constipation.
I've taken a Mindfulness Meditation course and it helps a little, but now, nothing helps with the panic.
How do others deal with the anxiety of EM limiting their lives???
Drugs like Celexa and Effexor, Cymbalta have been recommended but I hate all the side effects!
But I can't live with this anxiety and we have a trip planned to Italy in 5 weeks. I don't want to disappoint my husband who's been dreaming of this forever!!
Hi Lynee
I’m from Montreal Canada and I also suffer from anxiety/panic attacks
I do find that the anxiety gets worse as EM worsens
I too have refused all types of anti depressants, I did try Effexor for a while but anxiety symptoms actually worsened. Have you tried Clonozepam or Ativan? You only use it when needed so it doesn’t involve a treatment such as Effexor…
Good luck to you and PLEASE enjoy your trip to Italy
Have you tried 5-HTP by any chance? It's basically an over the counter natural alternative to SSRIs. I was taking it for my social anxiety before I got put on Zoloft...
The only side effect I experienced was drowsiness, but if you take it at night that may help your nighttime anxiety.
Why did you go to Zoloft if the 5-HTP was working?
Stryker said:
Have you tried 5-HTP by any chance? It's basically an over the counter natural alternative to SSRIs. I was taking it for my social anxiety before I got put on Zoloft...
The only side effect I experienced was drowsiness, but if you take it at night that may help your nighttime anxiety.
I can relate. I sleep okay most nights (in a very cool bedroom) but just have such general anxiety about the approach of summer and what Spring is already doing to my EM.
If you haven't tried it, Magnesium has a bit of an effect of relaxation and helps some people's EM, including for myself. It's only very mildly relaxing though. I do NOT recommend Paxil for anxiety.
Have you had the Cytochrome P450 tests to find out what drugs you are able to metabolize properly? It was very helpful to me and was available through Lab Corps (in USA). It turned out that I'm an intermediate metabolizer of an enzyme, CYP2D6, and that's why I react so badly to many drugs. Most SSRI's, tricyclic antidepressants and opiods are on the lists of the drugs that will cause problems for people who have a problem with that enzyme.
I'm in Toronto, Canada and have no idea where I could get that test. [Anyone know??] I've always reacted poorly to anxiety meds and maybe that's why.
I've tried small amounts of Magnesium (Calm) but it gives me a bad stomach ache and the runs. I doubt I could take enough to affect the EM.
Anyone in Toronto know about this Cytochrome P450 tests . Kentuckian said:
Lynee,
I can relate. I sleep okay most nights (in a very cool bedroom) but just have such general anxiety about the approach of summer and what Spring is already doing to my EM.
If you haven't tried it, Magnesium has a bit of an effect of relaxation and helps some people's EM, including for myself. It's only very mildly relaxing though. I do NOT recommend Paxil for anxiety.
Have you had the Cytochrome P450 tests to find out what drugs you are able to metabolize properly? It was very helpful to me and was available through Lab Corps (in USA). It turned out that I'm an intermediate metabolizer of an enzyme, CYP2D6, and that's why I react so badly to many drugs. Most SSRI's, tricyclic antidepressants and opiods are on the lists of the drugs that will cause problems for people who have a problem with that enzyme.
My son Drew, age 13, takes Zoloft for anxiety. He was diagnosed with EM at age 6. At the time we didn't realize the anxiety was connected to the pain. We have learned a lot since then. He has learned several calming techniques through pain management counseling. He also takes Clonidine daily. He takes .1 mg at lunch time, and .2 mg at bedtime. He can take a dose as needed if he feels a flare coming on. It lowers his heart rate and shortens the duration of the flare. Clonidine was originally developed for patients with high blood pressure. The .1 dose does not make Drew tired. However, the .2 mg dose he takes a bedtime does help him go to sleep. I hope this is helpful!
Very interesting. Do any other people use Clonidine for EM and find it works?? My son has taken Clonidine for the past 20 years, since age 5, for behavioural issues and Tourette Syndrome. I never associated it with EM! I'll have to ask.
I'm so sorry to hear your son developed EM at such a young age. I'm sure it was a difficult diagnoses to make and not easy for him to cope with. I hope he can still enjoy his life.
Dawn said:
Lynee,
My son Drew, age 13, takes Zoloft for anxiety. He was diagnosed with EM at age 6. At the time we didn't realize the anxiety was connected to the pain. We have learned a lot since then. He has learned several calming techniques through pain management counseling. He also takes Clonidine daily. He takes .1 mg at lunch time, and .2 mg at bedtime. He can take a dose as needed if he feels a flare coming on. It lowers his heart rate and shortens the duration of the flare. Clonidine was originally developed for patients with high blood pressure. The .1 dose does not make Drew tired. However, the .2 mg dose he takes a bedtime does help him go to sleep. I hope this is helpful!
I have had anxiety/panic attacks ever since unexpected scary surgery in 2009 - my EM didn't start until almost 2 years later. I find that deep abdominal breathing helps, but I mostly rely on knowing how to recognize when I'm experiencing anxiety. If you know that's all it is, then you can get over it more quickly. For times when I've not been able to beat a panic attack on my own, I've found that Ativan is the best as-needed anxiety med. I have had horrible experiences with daily depression/anxiety meds (Zoloft, Paxil, Lithium, Wellbutrin, etc.) so I will never rely on them again. Not worth it for me.
One other thing that has helped is finding the right meditation. Mine is built upon a particular song that has a tension-releasing effect on me. ("Black and Blue" from Brubeck's Concord on a Summer Night live recording.) Maybe there is a piece of music that is therapeutic for you - something that is engrossing, washes over you and awakens your senses while releasing tension. Music can be very powerful in that way.
Overall, I think the most important thing is believing in your own willpower. If you have the mindset that you can beat anxiety, that alone goes a long way in making it true. Good luck!
I agree with you 100%. I took an 8 week Mindful Meditation course last fall and it helped me so much. But when I can't walk cuz of the EM, the meditation doesn't help me. My panic is from feeling trapped. I've had anxiety most of my life, but I find with this bout, breathing meditation, nothing helps. I think if I find a better solution for my feet, the anxiety will lessen. I also feel some pressure because we have a month trip planned to Europe and I want to enjoy myself. The pressure of figuring out what to do before I go is adding to my panic.
I tried the older anxiety meds too and never did well. But am willing to give Cymbalta a try as it's helped my son a lot. And yes, soothing music helps me at night to fal asleep. I also believe we can do a lot more for ourselves to help with anxiety, which is why I've avoided the meds until now!
Thanks for taking the time to write! I'm finding all the advice very helpful.
LibbyK said:
I have had anxiety/panic attacks ever since unexpected scary surgery in 2009 - my EM didn't start until almost 2 years later. I find that deep abdominal breathing helps, but I mostly rely on knowing how to recognize when I'm experiencing anxiety. If you know that's all it is, then you can get over it more quickly. For times when I've not been able to beat a panic attack on my own, I've found that Ativan is the best as-needed anxiety med. I have had horrible experiences with daily depression/anxiety meds (Zoloft, Paxil, Lithium, Wellbutrin, etc.) so I will never rely on them again. Not worth it for me.
One other thing that has helped is finding the right meditation. Mine is built upon a particular song that has a tension-releasing effect on me. ("Black and Blue" from Brubeck's Concord on a Summer Night live recording.) Maybe there is a piece of music that is therapeutic for you - something that is engrossing, washes over you and awakens your senses while releasing tension. Music can be very powerful in that way.
Overall, I think the most important thing is believing in your own willpower. If you have the mindset that you can beat anxiety, that alone goes a long way in making it true. Good luck!
Hello, I have had EM since birth and in my adult life is when it became the worst. I mostly just dealt with tingling intense itching and pain in my feet that would make me want to crawl out of my skin. In my adult life I now recently have been dealing with it spreading to my lower legs, arms and hands. I have for years been woken up out of a sound sleep with anxiety and the feelings of EM. I would have to get up and deal with it for hours until I went on medication. I am now on Cymbalta, gabepentin, and oxycontin. Before I went on meds 24/7, I would take darvacet to deal with the Em and its physical feeling. The anxiety I felt from the Em would wake me up from a dead sleep. I would get up , take a darvocet and each time It would calm down the physical feelings and then the anxiety would disapear. I do have anxiety anytime I am sick and can't take my meds because Having the feelings and anxiety of EM intensely and being sick on top of it is horrible so I go to the dr asap. I also have anxiety about changing climates, medical procedures, operations etc. because it has brought out my Em so bad in the past that I Was hopitalized and taken care of by people who did not understand and medicated me the wrong way and make things worse.
I have always felt that as I calmed the EM the anxiety was better of disappeared. Hope this helps.
You're probably right about your ability to take Mg if you had that reaction to a small dose of CALM since I think it's Mg Citrate, which most people tolerate well. If you ever decide to try again, I'd only take 100 mg at first and build up slowly in divided doses to 400 mg and stay on that a while before considering anything higher. But I wouldn't try it right before a trip!
Whatever lab your doctor normally uses may have a test for Cytochrome P450 enzymes. It's more readily available than in the past because there's a simpler, cheaper way to do the test now. But you have to convince your doctor you need it which may or may not be a challenge. My doc did it because I have a long list of drugs I've reacted poorly to or didn't respond to at all. Lab Corps had 3 of the enzyme tests available, but only 2 fit the drugs I have trouble with and 1 came back abnormal. If you do it and they say results are normal, be sure and ask for a copy of the report. The lab labeled mine as normal when it wasn't but my specific scores were listed. They keep finding new mutations, so it's good to have the report.
Lynee said:
I'm in Toronto, Canada and have no idea where I could get that test. [Anyone know??] I've always reacted poorly to anxiety meds and maybe that's why.
I've tried small amounts of Magnesium (Calm) but it gives me a bad stomach ache and the runs. I doubt I could take enough to affect the EM.
Anyone in Toronto know about this Cytochrome P450 tests . Kentuckian said:
Lynee,
I can relate. I sleep okay most nights (in a very cool bedroom) but just have such general anxiety about the approach of summer and what Spring is already doing to my EM.
If you haven't tried it, Magnesium has a bit of an effect of relaxation and helps some people's EM, including for myself. It's only very mildly relaxing though. I do NOT recommend Paxil for anxiety.
Have you had the Cytochrome P450 tests to find out what drugs you are able to metabolize properly? It was very helpful to me and was available through Lab Corps (in USA). It turned out that I'm an intermediate metabolizer of an enzyme, CYP2D6, and that's why I react so badly to many drugs. Most SSRI's, tricyclic antidepressants and opiods are on the lists of the drugs that will cause problems for people who have a problem with that enzyme.
I am new to this site, and don't have the knowledge other people have. My doctor gave me Voltern cream to put on my feet and upper back when I get a flare. I also gave severe arthritis in my feet and use a walker. I don't use it frequently because it will lose it's ability to work.
The Voltaren set my feet on fire! I hope you are getting help from it though and not reacting like I did. I can't do Diclofenac products. If you have trouble with it, you may want to talk to a good compounding pharmacist for other suggestions.
Funny, I hesitated to use it on the bottom of my feet when I had a tendon issue on the top. It didn't bother me there but I haven't tried on the soles because I do worry about a flare up. I'm using a compound of 2% amitriptyline and 1% kertamine. I don't know if it's a coincidence but I have fewer flare ups and they'e less severe. We'll see what happens when the weather gets warmer!!
Anyone else ever tried this cream?
Kentuckian said:
The Voltaren set my feet on fire! I hope you are getting help from it though and not reacting like I did. I can't do Diclofenac products. If you have trouble with it, you may want to talk to a good compounding pharmacist for other suggestions.
Lidocaine is also supposed to be good in compounded lotions for EM. Haven't tried it yet, but I'm about to. It also has ami, an NSAID, gabapentin and something else that I can't remember right now. Hoping it will help. The base for the compounding lotion I'm to use is made up of lidoderm lotion (water based) and wheat germ oil, so gluten-intolerant people can't use it due to the wheat germ oil.
Hi Lynee - I can totally relate to you wanting to be all natural and your distaste for medication's side effects. I'm fairly new into the realm of EM, just diagnosed 1 year ago. Initially I was put on amitriptyline which did not yield any benefits so I did some research and found an article http://medicationsense.com/articles/2012/emtreatment.html this articled helped me understand the treatment options and I was put on a blood pressure medication (Propranolol) 20mg 3-4 times per day which has significantly helped my quality of life. Hope you find this helpful.
