Help! HFMD for three months and counting!
Posted , 21 users are following.
Hi everyone,
I am literally at wits end! I am begging for anyones help I would appreciate it so much!!
In september (2015) I contracted HFMD, starting with large (r than normal) red blisters with white in the middle, on my hands and feet, with dehydration, mild temperature, tiredness, a lot of itching, and a bit of a sore throat, but hardly an issue around my mouth just one tiny bump and one tiny "leaking" lip area.
Three doctors saw me and all said, yep its hfmd it'll go on its on time don't worry! 10 days maximum.
Well!
Here I am almost three months later with reocurring rash (and lip leaking) which over time the size of the individual bumps have lessened, however, I can rest and be good to my body for a few days, and then if I have to wake up early for work or go out with friends, it'll start to creep back. (but noting that never has the rash completely dissapeared)
as the rash goes back then i can start to get those flu symptoms but minimally. I swear its acting like herpes??? as if its chronic! :'(
I have to start my education in a month and I feel incredibly alone, I saw an additional two doctors that have never seen a case like this lasting so long and nobody knows what to do.
Since i've got access to scholarly articles I read up as much as I could and from the limited info that was there, I decided to talk to my doctor to give me Acyclovine , which is usually used for herpes simplex, shingles etc, and although it is known to not have the same effect for coxsackie, a study and a case study indicate that it may help.
But really, this has turned into an absolute nightmare and if ANYONE else has experienced anything similar I would absolutely love to hear what happened to you and what you did, or if you have any advice.
Thank you so much
1 like, 40 replies
anna32166 sandra43030
Posted
I'm currently having a similar situation. I was diagnosed with coxsackievirus (HFMD) in August of 2019 when I came into the doctor with a horrible sore throat, nightly hives, headache, stiff neck and pink eye... after about 13 days I recovered and felt great! Skip to two weeks later when I caught a cold and my HFMD symptoms returned. I had horrible lower abdominal pain on the left side, a headache, stiff neck, muscle pain, joint pain, fatigue, dizziness and stomach rash.
I had several tests done including blood tests (for herpes, West Nile, mono and more), urine tests, a CT of my abdomen, a chest x-ray and a brain MRI. All of which came back completely normal. Skip forward again to November and I'm still dealing with these symptoms. I recently caught another cold and I think my pink eye is coming back accompanied by the headache and stiff neck (on top of the classic cold symptoms). I've had a headache and stiff neck for almost 3 months now and no results. I've seen 3 different primary care doctors and an allergist who all couldn't find what was wrong. I see an infectious disease doctor this week and I hope he'll have some answers. This sucks.
linda20521 anna32166
Posted
Have you had an actual blood test for Coxsackie A & B? no one knew what was wrong with me I had your symptoms plus some and it wasnt till the blood work was done that anyone knew what was wrong. I contracted of 2017 and still get symptoms symptoms including itchy rash on my foot. I had both strains with titers at 1600. the infectious disease dr said i could have for 18 months or more and the virus stays with you forever like chickenpocks. i had in Twenty years ago as well but not this bad!
obi53174 sandra43030
Posted
hey guys,
I m set to graduate from med school this year and I have got the same sympthoms. started about 4 months ago and was pretty sure its hfmd but because it lasted so long and it comes back/ gets worse when I don t get enough sleep or feel run down. I think is hsv 6 /7, its a herpes virus most people get as children and over 90% of the population has it. for peace of mind you can test for an active infection and leave an update
karen30982 sandra43030
Posted
Has anyone had any luck with this? I think i first got HFAM in July 2022. At the time it was mainly ulcer type sores in my mouth but I could still eat things, just soft things and I got a couple of blisters on my hands, which I didn't realise were both connected. I thought the blisters were to do with the extreme heat we were having in the UK at the time. After a week the sores and blisters were gone. All I really did was use antibacterial mouthwash and take ibuprofen. Roll on December of 2022 and my whole mouth was covered in sores, I couldn't eat much, could only sip water and could barely speak as my mouth hurt so much and lips and gums swelled up. I thought it was an allergic reaction. I'm not allergic to anything normally though. I went to doctor and because I had a cold sore they gave me herpes pills and a medicated mouthwash. They didn't know what caused it so just assumed it was connected to the cold sore. I get cold sores when I'm not well though, I really didn't think they were connected. Anyway, a few days after coming back from docs I got blisters all over my feet, I could barely walk and some on my hands. I used blister dressings and blister plasters and antiseptic cream for them. I knew then I had Hand foot and mouth and realised that's what I had in July too. I lost a lot of weight during this week as my mouth was too sore to eat most things. however the sores disappeared in my mouth and the blisters were all peeling and healing well. Now it's February 2023 and I have noticed new blisters on my toes and I keep putting antiseptic cream on my hands as my fingers especially feel like they are getting blisters. The cream seems to stop them in their tracks so they aren't appearing to the eye but I can feel them under my skin and my fingers tingle or hurt if I grip things. I can sometimes even see the red circular blister appear and the antiseptic cream seems to make them subside. I'm also using Blistex (cold sore, chapped lips cream) on my lips just to hopefully stop cold sores as well and ulcer gels in my mouth just in case. So far it's the blisters on my hands and feet that won't go away. I am constantly putting the cream on my hands throughout the day. I haven't went back to the doctors with this as I feel they were useless last time and I keep hearing they can't do much for HFAM anyway. I have also been taking prebiotic drinks, cranberry juice and now vitamin D supplements in the hope it helps my immune system fight off the disease. I am desperate though, although the blisters aren't yet appearing on my hands I feel if I don't keep putting cream on them they will break out again. I'm worried my mouth will too and I only just put weight on again after the last time my mouth had sores (I'm naturally skinny we don't put weight on easily). I don't understand how this can keep recurring or even how I got it to begin with as I dont have or was near young children at the time and I don't know anyone else who had similar symptoms. I did have this once around 15-19 years ago when my children were small though. Also in adults I read it can reoccur as its so contagious but usually not as bad. However my 2nd time having it was much worse than my first. I also feel like it's becoming like cold sores in that it appears when I'm not feeling great (I have a slight cold/sore throat) and that was the same previous times too). Any suggestions? Anyone had much success?
chrissy09716 karen30982
Posted
Hi, Karen. 32 year old mother of a four year old preschooler. I woke up 7 days ago with a sore in my mouth, i had assumed I'd bitten it in my sleep. I had a headache but nothing major. 3 days later, I noticed a bump on my finger, I had just finished writing my son's birthday invitations out and chalked it up to that. Next day, woke up with painful blisters on elbow, tops of feet, palms and tops of hands. I went to emergency and the doctor looked for merely a second and diagnosed me with HFMD. My son thankfully has not gotten it and I have not the faintest idea of how i contracted it. What hurts the most is the blister inside my lip. I'm wondering if you can lend some tips on the medicines you've found to be helpful. I don't trust doctors and i fear this is something more serious. Thank you.