Acute Disseminated Encephalomyelitis (ADEM) Support Group

Pain Management

Hello,

This is my first discussion as I am new. I was diagnosed with ADEM late 2008 when I was 24yrs old. I have been dealing with things ok up until about Nov. 2014. I can't take the pain anymore, symptoms are worse, my balance and walking seem worse now than ever and I found this website in my search for answers. I see my Dr. later this week so we can discuss where I can go for help. I have been turned down by pain management over the phone, and one place actually said I could schedule an apt, but it was cancelled just the day before after waiting for what seemed like forever.

During my search online when I found this page, I also saw that neurosurgeons treat chronic pain. My Dr. and I are going to talk about that option as she too couldn't believe this pain management said that they couldn't help.

I was wondering if anyone else has problems with paid who were diagnosed with ADEM and if so, how they manage it, if anyone else has had problems trying to find a Dr. to help them with their pain management, etc.

Hi Bratt, what kind of symptoms and pain are you having and what type of treatment have you been under all these years?

Lynn

I'm currently taking gabapentin, doc just upped my dose yesterday from 300mg 3xs a day to 400mg 3xs a day (neuro said we can keep increading that), cymbalta 2 times a day, and LDN 3 pills at night a day. I also take adderall b/c of adhd, but yesterday at my apt I asked the doc if maybe I dnt have adhd and my mentality is just due to the adem. She said either way, it is what it is basically.

symptoms and pain: i was good for a while after i was walking quite normally. for i cant even tell you how long now, when i get up my legs will shake and i walk real stiff/funny lookin but am able to walk it off like right away, so that not a huge deal as i've come to deal with that. what i cant stand are the very few days when my walk is like that all day/night long which then too i also have the wrap feeling around my core as the MS hug. since this year, i have always had vicodin for pain as needed, which for me as needed was taking it as long as the weather was cold. my doc let me know whenever the laws changed and he could not give me that, but it was when the weather was still good and i did not take care of it right away. now since nov i'm in pain about every single day. i've been turned down by a few pain mgnt places and still currently trying to find one. its been so bad as i cant work but drag myself to do so a few times a month as i'm behind on every single bill which i have very few.

the pain is always different. different pains in different parts of my body, but its always my back, shoulders, legs and trunk/around my ribs. i've been trying desperately to find some way to cope online which is how i came to find this site, i take otc pain meds and found online that this cream/gel caspain works for nerve pain. i was disappointed in how much it cost, but i got it and that too doesnt seem to help. i have multiple things i wrap around my pain areas as that helps. a back brace, a waist slimmer, medical bandages, etc.

if you pm me i can get back to you if you are interested in other meds i've tried and quit b/c they dnt help. ....if your interested, i just dnt have the time at the moment to look into that. the gabapentin i was on after the hospital when it all started b/c it felt like i had bugs under my skin and that was literally driving me mad b/c i wouldnt be able to sleep. so i was on that at the beginning, i know i quit it a few time, i think twice, but like i said, i'm back on it. can you relate to any of this Lynn?

The only symptoms I have left are in my hands. They are stiff and feel like electricity is running through them from my wrists to the tips of my fingers. They constantly cramp and when it is cold outside, yes, the cold bothers them. I am on no drugs however. I simply deal with it on a daily basis. I had to learn how to use my hands all over again after I was diagnosed. Have you tried a Chiropractor? He or she, may be able to help you manage your pain without the pain meds.

Lynn

Are you by any chance seeing any of the specialist at the Cleveland Clinic?

Hi Bratt. Don't take this wrong, but I was kind of excited to read your post. My husband developed ADEM in 2012. At the beginning he had to be in a wheelchair because his balance became so bad. After a few months and taking Prednisone he was able to walk with the use of a walker until he fell and broke his hand. His balance became increasingly worse and now he stays in a wheelchair unless I get him up walking for exercise. His legs (feet) shake frequently t-o the day. I notice especially if he is stressed by something or at night as the sheets pull at his feet. About 4 months after onset he started complaining of a weird "itching", sometimes pain, on his chest at nipple line. His back also experienced "itching". He is still experiencing all of this, and it is driving him nuts. His neurologist could not figure out why he was feeling this, which surprised me because even I knew it was the nerve damage. We went to Stanford and the doctor there placed him on Lyrica. Helps a bit, but not completely. My husband had to go into the hospital for aspiration pneumonia as his swallowing is affected somewhat too. While there his prostate acted up and they gave him Vicodin. He realized it did help and he is taking that 2 X a day with the Lyrica. He is also taking a antihistamine type drug, Hydroxyzine HCL, to see if that helps because his skin reacts to touch. He currently keeps a shirt off most of the time, which makes it hard to go anywhere. I have at times wrapped him around the chest and back tightly w/ an ace bandage to try to mute the feel of the fabric on his skin. I am looking at a site that sells medical grade compression shirts, but haven't ordered any yet. They are made very tight to bind everything up. You should still be able to get the Vicodin prescribed, it is just a pain in the rear. We are at the point of giving up on the Stanford doctor, and surprisingly we are getting more logical thinking and help from my husband's PCP's physician's assistant. He is the one who is prescribing the Vicodin now and the hydroxyzine. He is researching and thinking things through. **Just read all this to my husband, and he is nodding his head to all of it. He states that at times he feels like he is being stuck with a hot arrow.. We both just feel that reading your post was like he was writing it. I hope we can help each other somehow if one of us finds an answer.

Good morning from Southern Europe! I had my First symptoms on January 1 2013 age 48 and 11 days. My hands went numb…could not even hold a cup of coffee…During the First 10 months had to be administered IVs of solumendrol 4 times X 5 sessions each… All hands and feet always felt as if electricity was running thru them. Dizziness a permanent feature, sometimes it feels funny when I am walking. This has not affected my balance though, as I am still riding my motorcycles. It just gets me when I walk. Hot weather affects me too. Pain comes and goes, sometimes headaches, most recently an acute back pain I had to fight with Mensulid. The latest MRI I had last November (7th in 2 years) did not reveal something new. Pain comes and goes in various parts of the body but it is not permanent. At one stage I had epilepsy seizures and was prescribed KEPPRA, I am now coming slowly off it as I did not have any mishaps during the past 12 months. I guess it is different on each individual and it is always nice to share our stories to see how other people are affected…Maybe age has a role to play, maybe other factors such as temperature humidity, tension at home… The sad conclusion I came to after being treated by several docs in 3 Countries is that it is very difficult to find a dedicated person to pay attention to your complains.Maybe they too are fed up with all the stories they listen. They look at you from a distance, maybe because they are used to listening to all these stories and are not interested in each individual’s ones…

I was numb from the bottom of my feet all the way up to my chest, down my arms and into my hands for a month; in addition to bad vertigo. Five days in the hospital on IV cortisone and the doctors wanted to insist I had MS. I don't. Half of my symptoms went away after the cortisone and the rest took a couple of months, except for my hands. ADEM requires alot of time and patience.

I am seeing a doctor at the Cleveland Clinic. This is the 2nd one. He said he has never met anyone with ADEM and is against pain meds. He did however mention the Spinal Cord Simulator and the shots in the back as possible treatments. He said with the simulator he would have to make sure I could get one which would allow me to have MRIs because of my condition. His comment on the pain meds was that he wasn't going to 'ruin my life'.

Do you have back and neck issues? Have you considered trying a Chiropractor? My husband is one and I know that he has made a big difference, along with good nutrition, in my condition.

Lynn, I just started seeing a chiro, and have an apt in just a bit. I am scheduled to go 3 times a week.

A spinal simulator should be your last option. There is nothing after that than a morphine pump for example. My brother has both and at 43 years old, his life is very limited. If you have any questions after you start the chiro treatment, let me know. Good luck. One thing to remember...chiropractic can be wonderful, but you probably won't see HUGE improvement in just one or two visits. Lynn

omg Lynn....i had to cancel the 3rd apt for the week. Thursday i could barely move and was just in so much pain just everywhere in my back!! yesterday i was getting around, but not very well. I was walking sideways and bumping into things and still had pain, but not as severe as Thurs. I ended up canceling my chiro apt, and then another I had w/ a counselor. I go back to the chiro on Mon and am going to ask if I should maybe take off the 3rd day and only go there twice a week. yesterday i think i could def fee how 'uneven' my body was, which would prob also explain me bumping into things and also using my cane.

i do have a question, as i emailed my neuro about an article i found posted in one of my groups about an antidepressant and morphine working very well for chronic pain.....my neuro got back to me and said opoids (spelling) should not be used to treat chronic pain and that my best bet is this PT program which is 5 days a week all day long, which....when i went the 1st time, i was totally prepared to get into this program, but they sort of turned me away and said to just work on things like meditation, stretching, etc. they said i could always go back....but now i do not have the time to put into that program. I have to call the pain dr. on monday, as they called and by the time i had called back (like 5min later b/c i was driving, lol), i could not get thru.

if the pain mgmt dr tells me i can set a date for the SCS, should i go ahead and do that? i'm so nervous about that, but i really dont know what else to do.

I can't tell you what to do, other than be very careful with the pain meds. We know of too many cases, including my family, that got into real trouble due to meds. What did the chiropractor tell you about your condition and pain? Did you get ANY relief from the pain? I'm sorry you're having such difficulties. Lynn

Hello Lynn,
I m 22years old I was diagnosed on 20th of Oct 2016 and I was in coma from 20th to 24th Oct.den I was shifted to general ward from ICU.after that I tried walking but cudnt walk and I had swelling on my rip hip.on 27th of Oct I was discharged and kept on steriods for a month.i was having body pain even after discharge.unfortunately that swelling didn’t went after eating medicines for 25days and doctor had to operate and found tissues of size 1cm and doctor had told me that bcoz of that lesion ur body might be paining.on 28th Oct operation was done and then for 1 month there was no body pain I used to feel like how I was b4 then from January 1St week of 2017 again body pain started went to many renowned doctors bt there is no diagnosis of anything so the started throwing dart in dark and since January I m eating tablets on depression and nerve pain but no progress.my chief complaint is I have chronic pain in my right leg,abdomen,back ache,cannot sit for long time.the pain is so severe that sometimes I feel like crying and since February 2017 I noticed some designs getting in front of my right and some black small patches.i m saying this bcoz in my reports when I was admitted in Oct it was said that my right eye’s optic nerve had demyelination.is Dat designs and patches due to Dat?if somebody is suffering like me den plz do suggest if ur cured from similar symptoms like me

i know this is an old post but i understand what you are going through. you feel like there is nothing out there that will help with the pain. i was diagnosed when i was 7 years old. that was 14 years ago. since i was 7 i suffered from a lot of pain. the most memorable is my severe lower back pain. i remember being young and nobody believed i was in the amount of pain i was saying i was in. there have been times where i was in so much pain i was stuck on the floor unable to get up. the only reason i finally got to see someone for it is because my parents found me lying on the floor. i have been on alot of medication and steroids. nothing takes away the pain. i went to the chiropractor and all he can do is help me manage it not make it go away. i had the option to do surgery put the neurosurgeon refused me do to me still being young. i dont have an answer that will fix your pain. i cant tell you that i have this magical remedy. but i cant tell you that i like ice packs and biofreeze. the freeze is like icy-hot except it works when you do. you have to move. add the ice pack for 10 min while you lay down.