Has anyone here decided to/ or become pregnant while having EM? I am curious as to any complications you have come across. I know many of my medications would need to be stopped or reduced. To most doctors this seems to be something they have never dealt with before and while I will definitely consult with them, I would love to hear your stories.
Any comments? Successes?
I have just accepted a new member that is pregnant. She only got EM during pregnancy. Maybe you should talk to her.
I am the new member who is pregnant, my name is Jama. I got this starting my 19th week but it was just a bit of swelling and pain in my feet and hands. Over the last 10 weeks it has progressed. They thought it was peripheral neuropathy. I just spent 10 days at UCSF Medical Center and they diagnosed me with EM. They thought it could be Amyloidoisis, but fat pad and biopsy came back negative. They also thought it was PCV but my JAK2 test just came back negative. As far as I know no one has really seen this brought on by pregnancy.
As far as becoming pregnant, I think the drugs will be the toughest. I was taking tylenol until mt third trimester but I have tried Nuerontin with no result, but you should not be on that your 1st trimester. I am weaning off neurontin and now taking OxyContin and Oxycodone as well as Nortriptyline. Again I don’t think I would have taken any of these in my first trimester. I am scared to death of the withdrawal effects on my son but I have no choice. I am going to try to reduce the medication when I am closer to delivering, but I don’t know if I will be able to. This combination gets me to the point where I can get relief only with my feet in a cool water bath. I put a trash bag in the water and my feet in the bag so my skin does not suffer. I literally sleep sitting up with my feet in the bath.
I can’t tell you in pregnancy has made this worse as my symptoms started after pregnancy. I know you all know this, but this is hell. I dread even taking a shower because the warm water hurts so badly. I don’t know how you manage your pain, but I am barely managing mine. I am simply counting down the weeks until I deliver (10 weeks) and I pray this goes away. I am barely dealing with the pain and some days are harder than others.
I don’t know if I answered your questions but I do wish you the best. Do you know what has caused your EM?
Hi, re your shower difficulty, another member gave me a tip a few months ago of how to shower wothout too much pain. Only works if your shower is over your bath tho. I fill my bath up to my ankles with cold water then have my shower normally with feet standing in the cold water. Hope you are able to give this a go. I also bath with me feet hanging over the edge if bathing.!
Jama said:
. I know you all know this, but this is hell. I dread even taking a shower because the warm water hurts so badly.
Hi there. My EM was brought on from taking an antibiotic -- a fluoroquinolone called Avelox. Other FQ antibiotics are cipro... levaquin.. and floxin. IT caused peripheral neuropathy and a so many other terrible symptoms. But the antibiotics are commonly prescribed for sinus infections and UTIs... and sometimes the reactions are not immediate. Check to see if you took one. Thank you for your feedback. I hope you get relief.
We only have a shower but I love the bath/shower idea.
I have not taken any antibiotics. The only drug I can think I took was anti-nausea when I got the Flu during pregnancy, it was called Zofran.
I did take an anti-biotic about a year ago after I had a motor bike accident in Bali on my honeymoon. I don’t remember the name but I will look it up in my medical records today.
I am typically an anti-pill kinda girl but this EM is breaking me down with the pain.
~Jama
I developed extreme EM during my 2nd trimester of my pregnancy with twins. I still have it, but not to the extent it was. It was SO bad during pregnancy. I has to literally be in front of a fan and use cold packs and had to set the thermostat to 57 degrees. HORRIBLE. I have it in my face an ears and recently developed it in my hands. The doctors had no clue as to what it was while pregnant, so I just recently got a diagnosis. I didn't get to try any meds while pregnant. Let me know if you have any questions!!
I just talked to my pharmacy and I took Keflex or Cephalexin, I just looked it up and it can cause this!!
Devastating that the medications prescribed to help us are doing so much damage. It developed EM in FEB and it is miserable but I cannot stand the thought that Avelox caused peripheral neuropathy in both hands and feet, and EM – I do not want it to keep me from getting pregnant and having a family. Please keep me updated on how you are doing.
I was pregnant with EM. I have 2 healthy children. I had terrible flares with pregnancy- especially my first who I had after a long, hot summer. They sent me 2 vascular at the time because I was not diagnosed at the time. I was not on any medications. Let me know if you want any more info or support.
My pregnancies were devastating. Although I have just recently been diagnosed with EM I know now that I have been suffering for 13yrs. My first pregnancy I was very sick with many flare ups, kidney stones and a whole bunch of complications. My second pregnancy was horrible. I had a complete breakout over my entire body at 6 months along. Picture a "rash" covering your whole body as itchy and painful as EM. It took over my entire body to the point of near death. I was misdiagnosed 4 times and was told my baby was blind and deaf. I was put on a ton of medecation that saved my life but had devasting side effects. My baby was born 6weeks early at 10lbs 12oz and addicted to a lot of medications. at 6months old she underwent surgery to remove a brain tumor and today is a happy healthy 6yr old!.I am not able to have anymore children but am so gratful for the 2 I do have. There isn't a week that goes by I don't think about all we have been through, I was bed ridden and so close to dealth, it changes you. It took 2yrs to recover and get back to work ect. I know I have not made you feel better but prehaps I have helped prepare you more. Feel free to ask me any questions ect. Best of luck
Hi, I am also very eager to start a family, have had EM for 5 years now (self diagnosed at this point) and am very nervous to take that next step. I have read so many horror stories about it worsening during pregnancy or passing it along, which is extremely scary. And, the information already shared has been very similar to other information that I've read.
Well I should update this thread and say I made it! I now have a beautiful 4 month old son. I had EM right through the pregnancy and even when they induced me I felt each contraction in my feet! I ended up having a C-section and when they gave me the spinal I was so happy to not feel my feet! I saw some relief with steroids they have me for the baby (to help his lungs develop because they induced me at 37 weeks). They gave me more steroids after I delivered (7 day tapered down Medrol pak) and I haven’t felt heat since then.
Before you congratulate me, I do now have severe neuropathy in my feet that is quite painful. But I’ll take quite painful neuropathy over EM anyday! (How sad is that!?!) I keep trying to figure out why this all started because I had no issues until I got pregnant. They have done hundreds of blood tests and nothing shows up abnormal.
Good luck to all you pregnant ladies, again I feel so blessed the heat went away after delivery and steroids. I’d love the pain to go too, but maybe time will heal these poor feet.
My 7 year old daughter has EM in her groin area and the only thing the dr's cant tell me is how its going to affect her as she gets older and goes through puberty and then wanting kids:(