Thanks for that as there are probably others the problem with being all over the world different time zones
Hi Jmk423. About that girl that her EM started after taking zoloft. I found this article http://rheumatology.oxfordjournals.org/content/42/4/601.full , relating the use of SSRIs to EM. In the cases presented in the article the symptoms desapeared after discontinuation, but it didnāt mentioned how long it took.
I started taking amytriptiline before my EM symptoms became present but i stopped taking it about 2 weeks ago and my EM is still here. So maybe it was a coincidence.
I am the girl who started symptoms after taking Paxil and Zoloft. My dr tells me that the blood vessels in the toes are the smallest in the body and thatās where my symptoms started. Pharmacist said reactions like this could take a long time to go away. He thinks my malnutrition is a main reason Iām not getting better. It now spreads to my foot and lower leg. My finger tips are starting too. Iām keeping my fingers crossed that as I get my weight up and better nutrition in my body that this will go away - still holding out hope. Where is your EM, Noelia? How long have you been off the meds and has it gotten better or worse ?
Well the weird thing about my EM itĀ“s that it started in my feet, then the next day in my hands and then ears and face. They donĀ“t usually flare together at the same time, some days i have symptoms in my ears and face, and sometimes in my hands and feet. Beings hands the most painful. ThatĀ“s why i suspected more of a systemic reaction. Most stories iĀ“ve read about people living with EM, it stared in one place then gradually spread.
I sttoped amytriptiline about 15 days ago and my symptoms are nowhere near gone. According to that article after discontinuing SSRIs it takes from 3 to 6 months for serotin levels to go back to normal. So thereĀ“s stil hope for both of us!!
Why were you taking paxil and zoloft for?
Hang in there!! Let me know how youĀ“re doing !
I forgot to ask did your doctor confirm that zoloft or paxil caused the EM?
I sent you a private message
Mom had mild burning foot syndrome like symptoms back in the middle 1990s when taking xanex. They stopped when she got off that pill.
In 2002 she took risperdol for six weeks and developed EM with bad ten level pain flares, constantly basically. She was using ice water to chill her feet almost freezing them. We went to re five times. She has a very bad version of the disease. Her MD at the time said the Risperdol caused her EM and he said he didnāt know how to treat it or what to do. He said she needed to go see others who could perhaps help.
She has had bad flares since 2002. Meaning she has seven level pain almost all the time, except sometimes in deep sleep she may not experience pain. She may not experience pain if her feet are almost frozen in cold ice water.
She has ten level pain flares. Nit would be ten level pain flares all the time if it were not for heavy duty pain medication. Fentynl pain patch and Norco.
We have tried many EM pain killers. Many treatments didnāt work for us. Each case can be different and can be from different types of damage.
My mom has reactions to diet and even warm food. She has flares in her face which are hot but not hurting her at times. Itās triggered by light. So she avoids the outdoors and sunlight. She also keeps her feet chilled using fans and an, ice packs, an EB cooler or water baths in a dish pan. The feet feel normal with 70 degree skin temps to her. Her flares can cause red feet with 90f or higher temps on the skin. She very rarely has cold or icy feet, maybe a few times in the past fifteen years. HI r problem seems only to be relieved by cold and medication just reduces pain from ten level to seven for her.
We have tried ketamine cream and also a tibial nerve block a diagnostic block. We have tried these and they worked better than all her pain medication. Reduced pain to zero for nerve blocks of tibial nerves, or down to a very low level of maybe 2 or 3 which she could ignore with the ketamine cream. 1/2 percent ketamine and 1 percent amitriptalyn cream. The amitriptalyn component however has me a bit worried for the cream thing. Because there are seven 5HT neurotransmitter receptors that regulate blood flow or temperature that are affected by Risperdol and amitriptalyn can affect six of those. So drugs that can affect the nerves or be given as nerve pills worry me a lot in the case of my mom. Because I donāt want to make her cindition even worse.
Also due to side effects we donāt use the ketamine cream but may try it again some time. The tibial nerve blocks for moms severe case, are risky and weād have to risk a permanent block which is unlikely a good path. It would be like amputation in some cases or giving her artificial diabetic feet without feeling and could affect her walking or cause her to need braces or even cause her to lose her feet, according to one doctors comments, So these more radical ways to bring down her pain have not been used for more than a short time.
Itās pretty much normal with EM that pain killers donāt work. I canāt really help much, but one thing that worries me is that I know it relieves the pain, but tell her to be careful with the ice cold water as it could damage her skin and cause more problems. I find that ice packs wrapped in a towel is good, but not all the time as it reduces circulation.
Yes ice water and cold water immersion has to be used sparingly. When I say ice water itās like four or five ice cubes in cold water and the water may fall to fairly cold temps below 60f maybe in the fifties or even if the forty degree range. In parts of the water the temps will rise from her feet heating up the water. Over time her feet will heat up the water to the 70 degree and above range.
Itās probably a good idea to not have your feet in the water more than 20 minutes max. She can handle 3 times the chilling a regular person could tolerate, due ther feet heating up the water. You will likely have skin condition or issues crop up if you use immersion therapy to much, and one way to reduce it is to put a little bit of hydrogen peroxide in the water or Epsom salts.
If you do a lot of cold water immersion that and perhaps the disease itself may cause your toenails to fall off. At least that was the case with my mom. That could be due to fungal j factions as well, which some experience and my mom experienced,
So I agree care has to be taken with cold water immersion. Having wet thin socks or wetting the feet and allowing evaporation to create chilling can help as well.
Quite a while ago I also put my feet in cold water, as you say not freezing. The other thing I did though to protect my skin was to put my feet inside plastic freezer bags so that the water didnāt actually touch my skin. My water used to warm up as well so I had an ice bucket by the side of me to keep adding a few.
Here is a little graphic image I threw together that shows the chief suspect which caused momās EM. Risperdol. Notice there are other antagonists that could affect the 5HT 7 receptor, like Amitriptyline and other antidepressants. With Risperdol for mom, it seems that it not only caused EM, but the damage was never repaired. Perhaps the antagonism is permanent, as you can see from the graphics. . . if the 5HT 7 was responsible for loss of normal temperature regulation or EM in her feet, then as you can see Risperdol is the prime suspect . . . in our case, which of course is rare. (Mom has had EM since 2002 keeping her at home with perhaps 6 short trips outside to a doctor per year on average now.)
Some patients with EM have good responses to Amitriptyline for their EM, so different people respond to different treatments with different reactions. . . in the case of Ketamine and Amitriptyline cream the mixture caused mild burning at first, but when we tried Ketamine without Amitriptyline there was no initial burning at all . . . but thatās a bit off topic. My point is the drugs that regulate or affect Serotonin can likely cause EM in some people. As I saw this happen with this extremely āsafe drugā which seems to be given out by some doctors like candy to little children, and pushed heavily as a solution for all kinds of minor issues . . . off label of course.
You are a very brave and strong ladyā¦