I was just diagnosed last week with this and I am feeling overwhelemed. In the past couple of years I have passed two, very painful, kidney stones and last month I started noticing a burning in one of my calves.
I don't mean to be child-like, but I am feeling like stomping my feet and shouting. I am just so exhausted. To make matters worse, I don't just have the lightening pain, but I also have this lingering, burning, numb feeling after it goes away. I have also had this on both sides.
I finally got a nuero referral, but I am being told it will take three weeks to get my MRI scheduled and maybe he won't want to see me until the MRI is done. I have taken a week off of school (I went back to college) and I am just feeling like this is all hopeless, and as if I am somebody's voodoo doll. (Oh wait, did I mention the fall I took in November that caused a high sprain ). I am tired of being that friend that is always hurt and in pain. I am worried about finishing the rest of the school semester and my 10 year old daughter who sees me crying all the time.
I am even too tired to keep writing this pathetic post. LOL
Oh, and did I mention the non-stop construction going on in my neighbors back yard?
Any suggestions to raise my spirits would be greatly appreciated.
Stephanie...bless your heart! This is such a terrible, yukkie disorder and I am very glad you have found this site! I wish I had some advise for you - BUT I can encourage you to keep each day separate...yesterday is a memory, today is a 'present' (we try to make it count and endure the hardships we are dealt) and tomorrow is a new hope of relief! ...believe me I DO understand!
What meds are you on? Your pain is shared here - we are / have been EXACTLY where you are! Please know there is hope! :D ... read the articles above on face pain; there is alot of info in them that helps! Wishing you a pain free nite, my friend...
I am taking norco now for the pain, but it's more for the forgetting of the pain.
It doesn't take the pain away.
I just started taking Tegretol this week, and tomorrow the dosage goes up.
I haven't had a choice this week but to "lie down on the job".
My husband has been carrying more then his share of the load and right now I am amazed that anybody can work while going through this. The pain, waiting for the pain, and the ghost of the pain has been terrible.
I tried this morning to not take any pain meds, and by 9:30 I was shaking in pain.
I am hoping that tomorrow will be better.
I am supposed to go back to school on Monday and I have no idea how I am going to manage that.
Oh hon...DON'T not TAKE your meds...they have to get a certain amount of 'build up' in your blood stream before you will have long term relief. I totally understand about the lying down on the job thingy; I was in and out of my job for about 3 months - my principal was / is so understanding! I sent him and my assistant principal info on just what this is and how it affects me / anyone around me. That helped. Please don't think I am strong, it just that today is an okay day (low levels of pain - Trileptal 600mg a day with Tegretol 100mg PRN as needed for breakthrough pain) - I also have a loving, supportive husband / sons that keep me strong and help to keep my mind off of 'things' sometimes. You are welcome to message me or any of us if you need to talk further...we are here for each other kiddo! :D
Cris
Stephanie Rudin said:
You both have been so supportive.
I am taking norco now for the pain, but it's more for the forgetting of the pain.
It doesn't take the pain away.
I just started taking Tegretol this week, and tomorrow the dosage goes up.
I haven't had a choice this week but to "lie down on the job".
My husband has been carrying more then his share of the load and right now I am amazed that anybody can work while going through this. The pain, waiting for the pain, and the ghost of the pain has been terrible.
I tried this morning to not take any pain meds, and by 9:30 I was shaking in pain.
I am hoping that tomorrow will be better.
I am supposed to go back to school on Monday and I have no idea how I am going to manage that.
I second that, if you need pain meds you need them. I have made it about 4 days now without needing opiates for the pain (thank goodness for that), but if I need them I need them and I wouldn't deny myself meds.
I feel for you, my kids also see me in pain and I hate that fact, the last time my kids went to stay with my inlaws for a break my 4yo was convinced I was back in hospital :(
I hope Tegretol works for you, and if it doesn't don't be disheartened as there are more meds to try (Tegretol gave me side effects that put me in hospital but it works for many many people, I'm now trying gabapentin). You just have to give it a chance to build up in your system.
Feel free to stomp your feet :) We all feel like that a lot of the time!
I feel for you! How many times have one or another of us been here? We understand, we care and we hope for better for you. A massive run of bad health coupled with bad luck can be a massive strain on anybody. We only have affection and empathy to offer, I hope it helps.
I am sorry you are having such a hard time. I have also been having a hard time, but have to work so i just try to get through the day. It is most definitely okay to stomp your feet though i recommend against crying or getting angry faced because both at least for myself and several other people on here make the pain much worse. I am often upset and spend much of my day isolating to a quiet place in my house because noise is a trigger (and my neighbors are doing construction too) i would like to be more social but i know i need to have a better handle on this before i can go out and do stuff. this makes me depressed and when i brought it up to my gp she told me she would be more concerned if i wasnt depressed right now. I have found learning about hte condition has helped me get a handle on some of this, and keeps the fear down.
Yay for your husband for helping out and recognizing you can not do some things right now.
I hate the how are you feeling question because if i answer "okay" within minutes i am not, i feel like if i say anything it will come right back and does. I even try to not think about that i am okay right now. I have asked that my friends, family and husband assume if i am up doing things i am okay and if not i am not, also you can see by my facial expression when i am not okay.
I hope the medications work for you and that you get your mri and neuro appointment. It took more than three weeks to get my mri (its on thursday) and my neuro appointment took more than a month (its next week) but i have heard that those are normal waiting periods for these and am happy that my gp was willing to medicate me for the time being until the neuro appointment. I am on tegretol and still have bad attacks but do not have constant pain any longer, it however makes my stomach really really upset.
Stephanie, I want u to know that u are not alone…most of us have been or are in the same place as you!! Once I found a med combo that kinda worked I added cymbalta( an antidepressant) which works to calm the nerve as well as with depression. I really didn’t like the idea at first but, I honestly feel so much better and can handle life now. My kids have seen me cry so many times and I felt that I was being a bad mom until someone told me that my kids are learning a life lesson. Life isn’t always great, there is pain and hardships. My kids have learned to be compassionate and help people in need. They now understand what having a disability means, and that people with disabilities have different needs than they do. I have to say my kids have been right by my side all the way, and have matured into very beautiful people who can look beyond their own needs and help someone else. TN has been a curse and a blessing at the same time. It has bonded us together as a family!! I hope my words bring u encouragement!!
My daughter is learning that not everything goes well all the time.
I guess I am just super tired, and feeling very sorry for myself.
All I can do is lie around to avoid the pain.
Even typing this is difficult.
My husband has been wonderful, and I am so blessed by my family.
Lisa26 said:
Stephanie, I want u to know that u are not alone..most of us have been or are in the same place as you!! Once I found a med combo that kinda worked I added cymbalta( an antidepressant) which works to calm the nerve as well as with depression. I really didn't like the idea at first but, I honestly feel so much better and can handle life now. My kids have seen me cry so many times and I felt that I was being a bad mom until someone told me that my kids are learning a life lesson. Life isn't always great, there is pain and hardships. My kids have learned to be compassionate and help people in need. They now understand what having a disability means, and that people with disabilities have different needs than they do. I have to say my kids have been right by my side all the way, and have matured into very beautiful people who can look beyond their own needs and help someone else. TN has been a curse and a blessing at the same time. It has bonded us together as a family!! I hope my words bring u encouragement!!
I am so upset thinking about having to withdraw from my classes for the semester because I just can't imagine getting dressed, let alone making it to school.
I can't keep my eyes open without pain.
My husband has been hounding the nuero office to get the appointment, and of course my my GP had a travelling MRI available yesterday and they kept calling the wrong number so I missed it!
ARGHHH
downrachel said:
I am sorry you are having such a hard time. I have also been having a hard time, but have to work so i just try to get through the day. It is most definitely okay to stomp your feet though i recommend against crying or getting angry faced because both at least for myself and several other people on here make the pain much worse. I am often upset and spend much of my day isolating to a quiet place in my house because noise is a trigger (and my neighbors are doing construction too) i would like to be more social but i know i need to have a better handle on this before i can go out and do stuff. this makes me depressed and when i brought it up to my gp she told me she would be more concerned if i wasnt depressed right now. I have found learning about hte condition has helped me get a handle on some of this, and keeps the fear down.
Yay for your husband for helping out and recognizing you can not do some things right now.
I hate the how are you feeling question because if i answer "okay" within minutes i am not, i feel like if i say anything it will come right back and does. I even try to not think about that i am okay right now. I have asked that my friends, family and husband assume if i am up doing things i am okay and if not i am not, also you can see by my facial expression when i am not okay.
I hope the medications work for you and that you get your mri and neuro appointment. It took more than three weeks to get my mri (its on thursday) and my neuro appointment took more than a month (its next week) but i have heard that those are normal waiting periods for these and am happy that my gp was willing to medicate me for the time being until the neuro appointment. I am on tegretol and still have bad attacks but do not have constant pain any longer, it however makes my stomach really really upset.