Maybe I am just having a down day. My sister and her kids have been here for a week as they live in another state and I only see them a few times a year.... BUT, today has also been a pain filled day. No matter what I do, I can't seem to shake the pain and break it. I have not had that problem yet in the progression of this condition. Usually I get a painful period for an hour or two, then the oxy takes over and while I am not 100% pain free, it is at a 1 or 2 so I can carry on and have a good day.... today that was not so. I have had to take the maximum amount of my painkiller, at every possible intervel that I am allowed and still the pain level has been at a 4, sometimes a 5, must of the day. and the problem with this is that I can not figure out what the trigger was!!!!!
I am sick of this! I am sick of living like this! I am sick of not being able to work. I am sick of being scared to leave the house, the fact I can't drive half the time (like today when it was supposed to be a special time with my 3 year old niece). I am heartbroken that my niece saw her auntie writhing in pain and that it scared her so much. I am heartbroken that I can't make plans. I want to be there when my newest niece is born..... but I am of little use. My sister can't really count on me because I never know when this thing is going to strike.
I JUST WANT MY LIFE BACK.
I am sorry. I had to let it out. My family does not get this at all. They say they do, but they don't really.
They don't but we all do Lisa. It is virtually impossible for anyone else to understand this condition as it is at times so evil. And you are having an evil time right now. I wish I could make it go away for you. I hope that the Hospital you are waiting to visit will be able to help you in due course. Take care, we care.
as Jackie says ,please know we understand and feel for you x I also hate feeling useless ,today my husband's car had to go for service ,I couldn't drive in the town ,just can't do it ,so my daughter had to meet him at the garage ,which takes a chunk out of her busy day and I am here feeling like a useless £^%$£"
It is difficult for our families to fully understand ,more so when it goes on for so long ,my husband always says "have you taken your pills?" when I am really bad (!)
I am sure your niece will have many, many happy memories of you ,when your pain is calmer ,you can cuddle up together ,look at a book ,even if you can't read to her ,watch a dvd under a blanket .
lets hope there are better days soon and you can really enjoy your family ,xxx
Lisa, if you think it might be constructive, we can set up a telephone call for me to talk with you and someone else in your family about the pain journey you're going through. I would also recommend a book by Dinah Federer, titled "Chasing Normal -- A Guide for the Newly Disabled and for Those Who Love Them". It's available through Amazon. Dinah is a TN patient on top of having a life-long neurological disorder called Charcot-Marie-Tooth which weakens muscle control in the extremities. She knows this territory well. In a spirit of fair disclosure, she's also a trusted personal friend of mine, and the originator of some of the materials I've incorporated in our Coping With Crisis article on disability application.
Lisa, my heart goes out to you and I can relate to so much of what your wrote. It's so discouraging and maddening that we can't do the things we want to do because of TN! It breaks my heart to have to say "no" to the people I love and to have to opt out of special events out of fear that my TN or MS symptoms will flare up.
I can say a resounding "amen" to all you said. You are definitely not alone in your feelings of frustration and sadness.
Hi Lisa, I was just telling my husband that I keep waiting for this to go away like a virus or something and well.... It has been 30 days from first episode. I actually got to drive to gas station yesterday and take my grandaughter to school this am ( I usually do ). Haven't driven in 30 days. They are right down the road. I am greatful for that. I so badly want to go to church tonight and I just don't think I can. It is getting windy here in SC and I am a little testy. It is so frustrating. I pray for peace contentment for the all of us. I am greatful I can cook dinner and do laundry. Small graces. I don't think my husband could take it if he had to do that. Hopefully you will feel better soon.
Thank you everyone! For your kindness and your understanding. Last night was a bad night, the boring pain in my face was terrible. This morning my sister and her children left to go back to colorado. The airport is an hour away and because my nephew is autistic, my sister (who is pregnant) needed assistance. My face was on fire and painful, I did not want my mother to go alone. I learned something important..... getting out helped. I still hurt but had something else to get my mind off things. We stopped at Walgreens on on a weird let's try this thing, I bought a pain patch with capsion (sp?) Darn thing worked! At least on the outside of my face pain. I think I will be going to the local homeopathic store to see what they say and if they have any :) But this 24/7 pain is so new to me and it is discouraging........ Hoping to see it go away for awhile. Sigh.......
Red, I may take you up on that offer in a bit. I am hoping when I go to the neuro, and mom comes with me, that she will get a real sense of what is going on. If not, then I will talk to you:)
Lisa I was in excrutiating pain for two weeks and decided to take asprin after talking with my pharmacy and after that I was totally pain free! For days! I could't believe it! My neurologist wanted me off asprin due to stomach problem possibilities and uped my carbamezpine. I now take 800mg a day but I am a little testy. I am so glad you got some relief! Every little bit helps!
Lisa, I'm sorry this thing has reared it's ugly, (now quoting Jackie) evil head! She is right, it is evil. It steals, burns, kicks, bruises and then pushes us off a cliff! Totally sucks. Completely disabling and depressing. I found out for people with chronic pain, the serotonin level in our brains diminish as the pain/day go on, and it's the neurotransmitter that causes "happy, positive" feelings. When I hurt, I reach for amino acids (a combo drink kind) and it makes the serotonin in the gut and sends it up to my brain. I also have an elliptical which gives me endorphins after 20 minutes or more. The more I walk on it, the better I feel. The pain is still there, but my toolbox is full of vigor and steadfast in NOT letting today be a loss. And, if the day is not what I really, really wanted, I remind myself that this is no surprise to my Father :-) He is here with us and can help bring the peace we need for this moment. Yesterday was hard for me until my workout at 1pm. Then it was better, but so dark with pain in the morning hours :-(
This TN started when my youngest was 18 months, my second was 3 years and oldest 9 years. My little ones have never really known a mom without this pain. When they were little, we would snuggle and watch Veggie Tales and other funny kid shows and this way I did not have to walk, talk or tend to them...just be with them. When it hurt, I'd ask them to kiss my owwee and I think it helped them to realized they were part of my solution, or OUR solution as this is a family problem.
If you're going to see Dr. Burchel at OHSU in Portland, I'm not far from there. Message me if you want to get together and talk (before, during, or after...anytime is fine). I think we are about equal distance from this hospital. Message me, okay?
I know exactly how you're feeling right know, it's only a few weeks ago since I felt like this. Like yourself, I'm unable to work or drive at the moment due to effects of the medication and it is so frustrating and makes me feel so angry at times. My daughter recently had her first baby and I was unable to drive to see her,luckily friends and my other daughter came to the rescue and I am still relying on them to take me to see her and my lovely little grandson. My pain and side effects were so bad when she had the baby but seeing his little face helped make me forget for a while.....and it still does!
For the past week I have had constant 24 hour pain which has been driving me crazy and like others have said people really don't understand how it feels,they tend to look at you and say'oh, are you okay' and then leave it at that. I don't blame them as they just don't understand just how painful and disabling this condition is!
I went back to my GP yesterday and he has now upped my Amatryptline and has also put me on Tramadol, alongside my Lyrica.....I feel very woosy this morning but am near enough pain free today. It seems to me that you can have one or the other....be pain free and feel like .... or feel alert etc and be in pain! It's swings and roundabouts! My GP is now following a treatment plan provided from my Neuro so I feel as though my condition is now been treated properly.
I reaally hope that you get some relief and hope back once you have been to see your Neuro and that you can start getting out and about a little more once you get some pain reief. That is a lovely offer from LyndaS, I wish I lived nearer to others who suffer from this condition it would be good to meet up from time to time and offer support to each other.
Hi Lisa - this is something we can all relate to...for me the meds work then they dont, one that is constant is change. So this is my advice, think about what you can do when you are in this pain. It sounds nuts, but for me high intense exercise is the only thing I found that blocks the pain (my mind is soooo busy focusing , it does not slow down) - also I found that I can channel this "extra energy" into some impressive workouts. Also, I find cooking also therapudic as I have to focus so hard on the cooking (and folks tend to leave you alone while you chop/cook/etc).
The other thing is that I personally am making major drastic changes to the structure of how I managed my work and home life to accomodate multi-hour episodes. At times, my bad ones have lasted over 2 days, but typically the super intense moments are aprx 2 hours are so. Therefore, I have claimed a room and I am creating a "happy place" - not some mystical place I can meditate and float away to, but a real room with all my fav things, pics of my fav people, trinkets from my fav trips - anything and everything to help get regrounded while the pain does its thing.
To think i can control it is silly, but I learned I can control how I react to the pain and what I do during those massively intense episodes. Hold your head up.
Also if you live in cold area, consider taking Vitamin D and spending 45min a day in front of a UV light, it helps keep the spirits up in the down times.
O Liza, How I wish I am beside you right now. As If I am reading a flashback of my life years back when I was new to TN. and because of frustration I am so angry that I struggle with the pain and the more I experience pain, so I learned to relax when I am attacked and wait till it calms down. I stayed in my room with some favorite things, books and handcaft, and sketching . O f course I longed very much to go back to work. I kept praying for that, and I have learned to talk to God, crying when I do, cause it comes right from my heart since it was new illness, my family can't seem to understand and it became a problem to them. When I am feeling good, i have a friend to accompamy me around till I gain my confidence. It has always been like that, I hoped for a cure I even tried some faith healers, etc. by being busy for anything sometimes it served as a theraphy, O I could tell you lots of experience I had. my ups and downs with TN, but I tell you Liza, we have hope.... One day we will be free with this
in various ways....I will include you in my prayers...., cheers!
Lisa, I find reading psalms comfort me alot! You could have someone read them to you. It only takes a few to lift me up. Also, remember your family could be in denial also. It happens and takes time. Praying for you!
I also don't want to sound that my family is not supportive... they are. They just are having a hard time understanding how debilitating this thing is. Also, my father went through a total knee replacement surgery not long ago. He is in pain as well and just grouchy. My mom was just seen by her GP because of various aches and pains and the doctor believes it is situational depression. He explained that some moms take on the pain of those that they love... it is how they are wired. So since both are suffering from pain and able to "push" through it, they think I should be able to somehow.
Me? I do have my happy place in that I have turned my room into a peaceful place to rest when the pain comes on. I downloaded an app on my itouch that is ocean waves which I play to try and calm me down as well as put lavender scents in my room, and soft lighting. I purposefully remove myself from the situation as to not be mean to others.... Also, I have found the more sound and commotion going on, the worse my agitation level rises during pain, which then rises the BP, which then means the pain gets worse.....
Kimburlee, thank you for asking. Yesterday and today were better days pain wise. No crippling stuff, just annoying pain and some pressure... but I can deal with that. I have had a couple of busy days errand wise. Getting out of the house was good for me, scary but good. I have noticed I am getting tired easier, so by 5, my brain is numb and the pressure starts getting to me. I think I need to focus more on listening to my body :) Something I have never been good at doing.
Thats great! I have had 2 really good days and I am shooting for #3. I have been on carbamazapine since dec. 14 and was just uped to 1000 mg on thursday, We are hoping that will be THE number, Prior to that, starting at 3:oo I would start going downhill. My memory is still very frustrating to me. I just started to drive again this week and that has been great. Blessings
This is now my fourth day pain free. Been maintaining my Tegretol 300mg at 6AM ,300 at 12 N and 300 8 evening. before, my Dr prescribed the gabapentine as combination, but I dont feel good with it, i dropped the gabapentine and retained the tegretol, the frequency of the pains were becoming lesser, the severity of pain also lesser for almost 2 months. if the pain increases, its 5/10. I am crosing my finger it will maintain this way till it dissappear. I had an observation of how it turned this way. next post.
So much support! I am so glad I found this site Lisa !!! We all walk together through this process.... !!! Bad days and good days... We are all there together... And finally something feels good about this monster.