I know my family and friends love me but they will never understand what I go thru. I am 24 with TMD, Nueralgia and IBS, All of this within the last 7 months. My boyfriend of almost 7 years has completely lost faith in me and thinks my inability to work is all in my head. Nevermind the last 7 months of Drs appointments and surgery and my closet full of medication. I feel all alone until I come here and see Im not crazy! I have lost 90% of my social life as well and i cannot stand it.
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You're never alone -- we're all here, just a keystroke away.
I know it's hard for others to understand what we go through. I've basically lost all my friends too. I barely want to leave the house, let alone go out and be social, pretending that everything is okay when I'm dying inside. I'm sick of acting.
Since I live with my partner and he has seen me go through this from the beginning, he has some idea of what I go through. He can even tell my pain levels without having to ask me - he just observes my behavior and then he knows. I love that about him.
It bothers me that your boyfriend thinks this is all in your head. My facial pain doctor, his fist study (25 years ago) was to prove that this is NOT in our head. There's a standardized psychological test called the MMPI that is generally accepted in the medical world. He had all his patients take this test, and by the analysis of the test results, he was able to prove that his patients had no difference than the general public.
IT IS NOT IN YOUR HEAD and don't ever let him make you believe it is. I'm sorry he's not more supportive. But he may come around -- he's being affected by this too, so maybe after he processes it all he'll do some research and then understand.
I can't say much, because I'm very new to all of this, but I'm also 24 and have been experiencing what I think is TN. I am horrified and my family is brushing it off as if it is nothing. In addition, my boyfriend of six years just received his orders to DC for the navy and has been gone for three weeks, and will be gone for a much longer duration. I feel as if I'm about to go through a whirlwind of doctors and medication, and I am terrified. I'm supposed to be moving for college in the fall and I'm scared to death, because I will then be truly alone and in an unknown place. In addition, like you, I have lost a majority of my social life. I get off work and find the nearest place to lay my head. I'm even scared to exercise like I used to, because I never know when the pain will decide to come around. All in all, I've told you this because you are definitely not alone! As for your boyfriend, I hope that he becomes more supportive, because I feel like that plays a huge role in dealing with this. Someone to support you. My family is very apathetic, and it makes everything worse. But that's what this site is for. We're all here to help each other and I hope to goodness that it gets you (and I) through this!
I understand the loss of social life as well, between the pain and the meds I have been out of work for months. I deal with people all day in my job and am on the road as well. I miss the interaction with my customers. I have friends that do try to help and ask me to go to lunch etc. but I dont have the energy, am dizzy or in pain that I cant go, let alone the financial hardship. You are not alone at all and I am sorry that your boyfriend is not supportive. My ex used to say things like that to me when I had a migraine and was sick from Thyroid disease, hence why he is my ex. Hopefully he will come around for you. I am also new to this as well but forever grateful that I found this support group, I hope it gets better for you and have faith that it will for all of us, Wendy
youre not alone! im 24 single live alone and suffer with TN and IBS! I do have my mom thats only two hours away so thabk god i can go visit her. Iknow what you mean by losing your social life! i feel like an old woman laying around my house in pain wasting my life away! thank god my nuro is suggesting the MVD surgery so im joping to get it next month and get my life back! If you ever want to chat, Im here for you! Know that youre never alone! Also, do you live in the US?
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You guys can see if there is a local support group -- it realllly helps me - AND helps hubby understand.
You can also look here and put yourself on the member map by location.
Learn all you can -- and if you need -- we can post what to tell family members --- its a few pages back - so they will "get it"
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Thanks guys! (and gals) I only have my dad and younger sister and my bf family, I agree that it may be hard on him as well, I went from SuperWoman/Mom., to complaining nonstop how terrible I feel and needing alot of help with daily life. I can understand that being a big pill for him to swallow that I am not in the same health as before. I just hope he comes along. He recieved his paperwork in the mail today, his portion of my disability case since he is the one that helps me with daily life. Lots of the same questions I filled out with my claim, so hopefully reading those questions and being able to respond he will see how different my life is now since all this pain started. I thank God I still have some good days but the Dr. reluctantly told me those will come less and less with age., Oh joy. Has anyone here had any luck with disability?
you cannot expect anyone outside of this group to "understand" - you are different person and will be a different person, you need to put alot of energy into thinking about how this new person can be a great person regardless of who decides to stand with your or in your shadows as you walk onwards. Hang in there, there is ALOT of love from everyone here
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I am so sorry. I totally understand how hard it is for your family to understand. My three daughters and husband sometimes just don’t get it and think I should be able to “get over it”. It’s not that easy! What I found that did help them to understand is educating them as much as I could about TN. The post “Hells Plague” was a good post to share because it gave a clear picture of how bad the pain can be. It used examples that I had never thought of. I changed a few words to fit my pain and my family understood a little more. I too have not been able to work now for 4 months and it has been torture for me not being able to do what I love and being on only one income. Just hang in there. Better days will come and don’t dwell on how bad the future may be. Live for that day only and focus on the positive. Even little things can be accomplishments for us.
I will be praying for you. I hope your pain is soon and know you have an understanding “family” and support group here.
God bless!
Nikki
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I am currently on disability from my job, so yes, you can obtain it if you qualify with whoever you work for. My job requires driving approx 100 miles a day, and the meds dont allow me to do that, I am too dizzy. E-mail me if you have any questions about disability and I will try to help, I am an insurance adjuster so I can help with some questions, Wendy
I am so sorry you are going through this at such a young age. I am also on disability. I was in a nice I.T. career and loved it. Leaving it was so difficult. I have lost many friends and don't go out much. Luckily, at my age I have a few friends that understand and actually want to hang out at home. There is a write up on here that I posted from another site awhile back. It should be under "featured" discussions but you might need to go through them. It was a nice article to describe what we can go through. Good luck to you all. Those young men will need constant reminding to understand. My husband still does sometimes.
Hugs,
Debbie
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I am sorry you have to suffer at such young age. It will be a long and difficult journey. You are not alone, we are in the same boat. Perhaps you invite your boyfriend to join this group because this will help him understand more about TN. You are in my thoughts. Take care.
Yes, it is Hells Plague and they can never understand. Only the one in pain, and others with the same pain, will EVER understand. My husband, loving and sweet and long-suffering, said to me several months ago "you're not really sick" and believe me I lost it!!!! Bad choice of words. I hate him feeling like he walking on eggshells around me, but when you're in pain and can't do the simple things you used to, it's easy to lose it and get pissy and emotional. WE ARE SICK - even if we don't look like it. IT IS A REAL DISEASE. It would be so much easier if those we love could, for one hour, have our pain at its worst. Isn't that a terrible thing to say - but sometimes there is so much anger!!!!
Hey Pinky - how you doing? please keep in touch - the more we work together, the stronger we will all become
Hello, my name is libby. I am new to this site, just looking around to see what everyone has to say. I understand your comment and it may sound bad, but I agree. When I am hurting I find it difficult to remain pleasant. Even when the pain is mild I find myself on edge, because I know it is going to get worse before the day is done. I have gained a new Diagnosis of anxiety, I think because it always feels like impending doom. I hate it!
I am so sorry to hear of all this pain. I too have multiple things going on - TN, bad back and knees, and IBS, ulcers and gastritis. Unless people have gone through chronic illness, they will NEVER understand the pain. I hear many times "you're always sick" and even "you've been sick as long as I've known you." I feel like saying "so what's your point?". My husband has been there through all the ER visits, etc. but still he gets fed up. Since no one but you (and all of us) understand, when things get bad I say to myself "I'm all I've got" and plan to take care of myself. Do WHATEVER you can that you enjoy. Help others who cannot do as much as you can. That old saying "@#$# happens" is true for all of us. Hang in there.
Thanks Everyone, I have been distant lately Im at my wits end, I had a bad attack last week on top of a migraine that took half hte vision in my right eye for a good while. I try to push thru it I know my family needs me but sometimes I just need them to be there for me! A hug would be nice, a chance to just take a break. My dad has kept the kids for a few days so I can try and focus on me and my pain management, I have a slight migraine today and pain behind my eyes. The stabbing pain in my ears has returned and worse then ever, Im glad it only happens every other day or so. Im still waiting to hear back from disability. I stopped recieving my STD from my job since I will not be able to go back to work.. Social security takes forever here in Oklahoma but I am prepared for the wait. My boyfriend has since started working a second job to provide for us and I feel terrible it has come to that. He was already working 12 hr shifts at his first job.. :( I hope some sort of relief finds us soon..again thank you all for your kind words and prayers, I think about you all often and hope everyone is doing well.
Hi, I was just diagnosed a few days ago. I am 23 years old. Please contact me. I would love to have friends who understand the pain. Thankfully (and unfortunately) my pain got so bad I was convulsing and in the hospital for 2 days to get my pain down. Thankfully because it showed my friends and family how bad this disease really is. Before they were blowing me off and telling me I was silly to not just go back to work. Now they are worried. I wonder how long it will last before they get tired of me being sick all the time. It has only been a week since the pain started. I needed my friends so much last week, that I am scared they now think of me as someone who needs help, not who can be in a friendship. Please contact me. I am sure we can support each other.
There are very few of us with TN (ATN) in our 20s. We should stick together.
Love and Patience.
May your remission start today and last forever.
We are sick. Like havin a broken arm. ALL the time. You don't want to go out when you just broke your arm. They don't understand that. Why would they?? Yet this is what we are forced to deal with every day. Plus when you do go out there is the side effects of the medication. Which can be embarrasing at times. So there really isn't a desire to be A SOCIAL butterfly for me. TN is the most challenging disorder and yet is entirely invisible. We are up against a mountain people, it is no wonder it is difficult. We got to be easy on ourselves.... This is the WORST!!!!!!!!!!!!
You have seen by finding this site that you are neither alone but rather there are many like you that are battling TN, AD, etc. One of the best things you can do is keep checking in here and if nothing else just read the posts of other folks, wonderful and caring folks like you were once looking for ways of coping and many of us still do. Your boyfriend may not (likely does not) understand the scope of what your dealing with. I've been married to what I have realized is the most wonderful woman in the world, even with all we've been through and the limited lifestyle she has, I find myself striving to find strength to match hers and be 'worthy' to be her husband. She has given me three terrific kids, all moved out now and they didn't understand why the doctors office visits, the neurosurgeons or trips to the dentist for root canals and tooth grindings. One is now an EMT, another a NICnurse and they have each circled back to regret how insensitive they were. It's ok, they were just uninformed and unaware. We are now getting ready to teach a new pain doctor, so we are downloading as much current info on her condition that we can find.
Take each day on it's own...some will be better than others. I can say that through it all, we have grown closer than I thought we ever could and yes in the beginning I was wondering how anyone could go through all she has....just make sure to check in and get to know your new friends :-) you can make it...you can help others while you go through it and as you have already seen others can help you by just being here and offering insights from different experiences and perspectives. Personally I've watched amazing strides occurring in medicine in SOME areas and pharmaceuticals has been one of them!
We've been away from the forums for a while and finding this site today, it gives my wife something she can look forward to when it is a 'drapes shut and head under the covers day' just to minimize the triggers that set off her breakthrough pain.
I wonder if anyone else has seen a relationship between barometric pressure and breakthrough pain...boy did we do research in the early days :-)
God Bless All!