I’m new to this site and look forward to any comments.
My problems started this spring when I was on three different antibiotics for a sinus/ear infection. For 30 days I completely lost my appetite and lost 16 lbs. I was only 116 lbs to begin with and couldn’t afford the weight loss. I was then hospitalized for a few days because of malnutrition and abdominal pain, etc. They ran a ton of tests and couldn’t find anything wrong with me. All labs, ct scans, gallbladder tests, endoscopy, etc came back normal. This brought on horrible anxiety. This is where the EM comes in.
They started me on an antidepressant (Paxil) and the very next day the burning/redness started in my feet. I gave it a few days and continued to take the med. After three days I went to the emergency room because I was freaked out. They said I must have had a reaction to the med. I stopped the med and the burning subsided a bit but didn’t go totally away. Two weeks later they started me on Zoloft. Go figure, the burning got worse. They then decided that SSRI’S were not for me.
I have started CBT for the anxiety which is getting better and am now on a low dose of Xanax. I am still struggling with trying to put on weight but managed to get back to 110 lbs. My anxiety is now mainly because of the feet. Went to a rheumatologist who took 7 tubes of blood and I know i do not have lupus, RA, and my sedimentation rate is very low, My primary dr thinks a lot of the reason my feet aren’t getting better is because of my malnutrition. I tried a baby aspirin but got no relief. Am terrified to try any other medication for fear it will make things worse.
I have flares daily. It’s been two months since I stopped the meds. Don’t know why this won’t go away. Mornings are usually okay, but come afternoon I have to elevate my feet and cool them off. I wear flip,flops every day. I sleep with a fan blowing on my feet every night to keep them cool. Nights are the worse.
Has anyone else ever had this come on as a result of a medication? Any help, suggestions for relief from the hot/red/burning would be appreciated.
Certainly sounds like EM but I personally have never heard of it being caused by medication.
I used to find that a fan at night was the best thing to help. However I can’t do that now as I have ulcers on my left leg which are bandaged. The other leg has recently been amputated due to ulcers.
My rheumatologist found the cause of my ulcers is rheumatoid vasculitis. In August I had an infusion of Rituximab which has not only helped my ulcers to start to heal but has also made my EM far better so in conclusion my EM I think must have been caused by vasculitis.
I know this is no help to you but I think it’s very interesting.
You say you try and cool your feet down, how do you do this. I always found the best way was to wrap some ice packs in a towel and put them on my feet. It’s important to wrap in a towel as putting an ice pack directly onto skin isn’t good. There are lots of tips in existing discussions to help keep cool.
I hope you find being a member is helpful if nothing else being able to talk to others going through the same is a great comfort as EM is rare it’s highly unlikely you will personally know someone else who has it.
Great to have you onboard.
Thanks for responding back to me. You’re right, just knowing others are going thru the same thing as I am gives me comfort. My husband tells me not to think about my feet. Easier said than done when they feel they are on fire.
Sorry to hear about your problems. Guess I should consider myself blessed that I’m not as advanced in this disease as others.
To cool off my feet I have a spray bottle that I keep next to my recliner filled with water. I spray my feet and turn on the fan. Helps most of the time. Won’t use ice packs - heard horror stories about problems that can cause.
Thanks again for your response. Have a good evening.
You certainly have my complete respect that not only did you have ypur leg amputated, but your attitude is so positive And upbeat.
I know we are supposed to be positive and not talk about dark feelings, but that is very hard to do for me. I feel like a fake.
There is just no way to not feel how this illness takes your life away, bit by bit. I have tried to do the Suicide , (in Europe )
Tourism method, but because my toes swell and burn so much with altitude that it would not work out for me. I feel I’m forced to go along with this tortuous illness until the other avenue opens up one day.
I hope so much for you that you will experience much less pain and gain a better quality of life.
Goodness knows you DESERVE it.
Beth aka Twinkle Toes
Hi Twinkle Toes
Thanks so much for your kind comments! People keep telling me I have a very positive attitude, but no sense in being otherwise. I just have to make the most of life. Having my right leg amputated was a relief as I then had no EM pain, but I wouldn’t recommend it as a solution! The other funny thing people laugh at is that I tell them I have lost weight, of course they don’t realise what I mean until I explain that my leg must have weighed quite heavy:-)
However, there are times when I am alone that I feel very much down in the dumps and wonder why this had to happen to me.
I hope one day I can have a prosthetic leg, but that isn’t possible until my other leg is good. Then I can learn to walk and have a normal life.
Please don’t ever feel like going down the route of suicide. There is always hope that one day a cure or even a better way to relieve the symptoms of EM will be found. The more we make people aware of EM the more chance there is of research being done into it.
I must admit that there was a time a couple of years ago when my husband and I seriously considered it. He had terminal cancer and I had to look after him on my own, no help at all. He passed away nearly 2 years ago on the 1st November 2014 and I am really glad we didn’t do it.
Julia aka Sheltielife
There are a lot of down days with this disease. Dark days.
But I am really glad you are still here, still helping people with your experiences.
As for myself, I have learned that if I keep trying, things eventually get better. Not always the disease… sometimes my ability to handle it or find support around me. Even after or during the dark years. Or dark decades.
There is something to be said for just continuing to breathe. And helping people. Even if it’s just a kind word.
I agree, there is nothing better than being able to talk to people going through bad times and even helping others gives pleasure.
There is a lot to be said for positive thinking, but sometimes it’s hard.
Jmk423 what type of antibiotics did you take? Fluoroquinolones (ciproflaxin and levaquin are examples) are known to create problems in some people, particularly those who are older and may be low in magnesium. Medical complaints include EM and ruptured tendons. That particular class of antibiotics was “black boxed” by the FDA in May.
Dr Jay Cohen, a psychiatrist, was “floxed” by cipro and got EM as a result. His web site, medicationsense.com, is a good resource on EM and how he treated himself. The site is a little tricky to navigate but thankfully it has remained up as he passed away last winter from cancer.
I had an adverse reaction to Norvasc (amlodipine) which was prescribed for Raynaud’s which I had in the mornings, followed by EM in the evenings. The EM was in my feet, but one dose of that med caused a horrific and painful EM flare all up my arms to my shoulders and legs up to my groin. Did some internet research and found that Norvasc caused EM in a few people (rare occurrence). After that bad experience, I now always research meds prescribed for me and start with a 1/4 dose. (Dr Cohen did this with most of his patients and wrote articles and a book on this topic)
My EM was secondary to a B12 deficiency caused by pernicious anemia (PA). B12 is needed for nerve health, making blood cells and DNA for repairing cells in the body. Symptoms of deficiency include panic attacks, racing heart, fatigue, hair loss, insomnia, tingling hands and feet. B12 deficiency causes nerve damage. You might want to get your B12 checked. Even though considered normal, 200 - 500 pg/nL is a gray area where neurological symptoms can occur. My B12 was196, barely below the minimum, but it was the cause of many of my problems.
My EM improved a bit after I started getting B12 shots regularly. I do have other medical issues beyond PA. But I believe the late diagnosis of PA has brought on many of my health problems, including EM.
Thanks for responding back to me, gracious geek girl.
I was started on ammoxicillin first, then omnicef. I knew from 10 years ago I was allergic to Levaquin. Got a rash but it went away when I stopped the med. The reaction started the day after starting an SSRI - Paxil. It improved a tiny bit when I stopped it but started again when I was put on Zoloft. I found another young girl that hers started after starting Zoloft.
I’ve been off those meds for two months with no improvement in symptoms. My labs all came back normal, although a bit low on vitamin D. I currently take multi vitamins along with vitamin D3 and B12. Will ask the dr next week to check my b12 again.
Hope you continue to see improvements from this horrible disease.
Since you are supplementing B12 you may not get an accurate test result (it will be high), especially if you are taking it in large doses (1000 mcg or more daily; RDA is something like 2.5 mcg). You have to stop it for 4 months to allow time for all your red blood cells to be replaced. But if it is low or low normal even after supplements, investigate further for a reason.
If you thought you might have pernicious anemia (can run in families) then get tested for antibodies (2 different tests, neither is infallible). Stop all B12 for several days prior to getting a blood draw for it.
I have found that my pernicious anemia (or maybe it’s the Pure Autonomic Failure which I’ve also been diagnosed with) has made me super sensitive to certain drugs. I can’t predict which ones, but have not been able to tolerate any SSRIs, tried Lexapro and Escitalopram. I’ve also tried a SNRI (Cymbalta) and had a similar reaction. I did briefly have some luck with a TCA (nortriptylene) until it started causing tachycardia and water retention problems. Then I tried gabapentin, followed by Lyrica for the foot pain but those also caused water retention problems and bad psych effects. At this point the only antidepressant I take is Remeron (mirtazapine), at night for sleep and to increase my appetite. I lost a lot of weight with these illnesses (got down to 125 lbs which at 5’10" was unhealthy).
I am 5 ft 4 inches tall and dipped down to 100 after the antibiotic fiasco. I’m up to about 110 but was literally forcing myself to eat for the first two months after stopping the antibiotics. I finally have an appetite now so can finally get enough calories to start the weight gain. It’s taken me 4+ months to put on 10lbs. I need to add at least another 8-10lbs to be at a healthy weight because I also have Crohn’s disease. The anxiety from the EM doesn’t help the situation.
Dr will not let me try any meds for EMbecause I am very drug sensitive. What do you do help with symptoms besides your meds, or do your meds keep your EM under control? I
My EM pain improved with regular injections of B12. I’ve also been taking florinef and midodrine for the PAF for about a month, but they don’t have much effect on my EM symptoms. I still can’t walk much without pain but at least the pain when reclining isn’t as bad.
Have you tried R-alpha lipoic acid? It’s an OTC supplement (an antioxidant), you can get it on Amazon. Some people say it helps for pain. I took it for about a year but didn’t really notice an improvement.
You probably have absorption problems from the Crohn’s which possibly may be behind your EM. Lately I’ve been reading about low dose naltrexone, LDN (google it). A measurable percentage of people with Crohn’s improved greatly on it. Perhaps your doctor can prescribe it. It needs to be compounded for the low doses.
It’s funny that you mentioned R-alpha lipoic acid. I see my Dr next week and that’s on my list of things to ask him about. I’m very med sensitive - they won’t let me try amitrptyline, neurontin or any prescription med for that matter. Will also ask about magnesium. A friend of mine recommended an accupunture person that has EM as a result of menopause. She has reduced her symptoms by doing a liver detox and by taking Chinese cooling herbs and a foot soak. May try to go that route as it’s helped her.
Don’t remember if i asked you, where do you live? How old are you if you don’t mind me asking and how long have you had EM?
I live in northern California. I was 57 when I started having EM symptoms. I had symptoms of B12 deficiency several years before that but my doctors couldn’t find anything since they only ran thyroid and CBC blood tests. It’s been 3 years.
I take magnesium every day, have for a couple of years. It seems to be something that is low in many older people or those with malabsorption. I think one reason is that our soils are being depleted and magnesium is not getting added back in fertilizer.
Did you notice the magnesium helping? Has your EM gotten progressively worse? Would love to keep in touch with you as you have been so helpful to me. Are you on Facebook? Send me a message and maybe we can be friends. I promise I’m not a stalker
My EM improved after getting B12 shots, but it took a long time. Most of the tingly pain in my feet I think is from autonomic nerve damage and problems with blood flow from the PAF. I’ll PM you.
BTW, I take .25mcg of synthroid and for the past 4 months my levels have goe to the very low end of normal. I’ve asked my dr if I could be turning “hyper” and that’s why I can’t put on weight quickly. He keeps telling me I’m still in the normal range.
I live in Wisconsin where it was a brisk 40 degrees this morning - 62 degrees in my house. I keep my front door open to get the cool breeze coming in. My feet love it but my poor husband is cold.
Do you both know you can talk using private messages on here? Just thinking it would be more private than Facebook.
For conversations between people who have made friends that way other people wouldn’t be disturbed if they have set their preferences to be emailed when anybody says anything e.g. I have and I am in the UK and it’s nighttime here my iPad keeps beeping that I have an email. I know I could turn my sound off but I use it as an alarm plus I don’t want to miss an important message.
Just a thought in case you hadn’t thought about it.
Sorry we just started our first private message