TN, TMJ, Fibromyalgia, Reynauds Phenomenon & Epstein Barr Virus? Or am I the only weird on on here? Funny thing is the list goes on! Still, people tell me ‘I look normal!’ I could almost scream! Someone tell me, I look terrible, I look so sick!
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I also have Fibromyalgia and TMJ along with TN. I had the other two for about 10 years before I developed TN. I have found that some of the drugs I take for TN help my Fibromyalgia: Baclofen and Topamax. I weaned off of these meds in the Spring, hoping to get pregnant. I didn't realize how much better the Fibro had gotten until I weaned off of them. Back on meds now, pain too bad to stay off of them.
i think when people say things like "you look normal" or "but you look so good" they are actually trying to help and make us feel better a lot of times. I think most people don't realize how these words can be frustrating .
Sorry to hear you are suffering so much! Hoping for better days ahead for you!
I look at myself everyday wishing it was a gash in my leg that looked horrible. I'm afraid my job thinks im lying how much pain i'm in and unsure if i am even able to go back to work i'm afraid i will end up in so much pain
Hey thanks!
Sally, I simply don't know how anybody with chronic pain - TN - and the rest of what you have can carry on working. I was medically boarded because I simply could not do my job with the pain I was in. It was not only the pain but I just could not concentrate and it was becoming obvious in the number of mistakes I was making as the day wore on. It was obvious to me editors there was something wrong. I had always been so sharp. Then after being "boarded" I had a fairly good day and went to the mall. Met one of my ex-colleagues who said "you don't look sick". I just smiled. If people in South Africa only knew what goes into boarding an employee they would never ever make that comment. But I know how you feel. People have to see something to believe otherwise they think you are malingering. All the best to you.
I've just started with TN, approx six months now...but my issues go way back over 22 years, Epstein Barr, Fibromyalgia, massive migraines w/loss of vision, Shingles, Lyme Disease, HerpSimplex (ColdSores), long lasting effects from Lyme, nerve damage from shingles......more recently TMJ....This TN has knocked me for a loop to say the least. I am so tired of being tired & having all these "ailments" that most "normal" people just don't understand what it's like to be so drained physically, every day :( I am trying my best to deal with TN, so far without meds as I had been on neurontin & amitriptyline for many years w/lyme & migraines...weened off that years ago...Ive been doing acupuncture with great benefit :) just started massive vitamin therapy, which has already exacerbated my esoph/stomach/intestinal issues..damned if ya do, damned if ya don't... back to the "looking normal" part, Yeah, I to don't look "sick" amazing to feel so horrible, but yet, still look so "normal" it's insane!
Hi, Sally.
I have TN and Epstein Barr; wondered if they are related, but never have had an answer. I am pretty sure I have TMJ, too, but have not been diagnosed.
I feel your pain and feel frustrated that my ailments are not "out there" sometimes. I never can adequately explain what I am going through.If people could just feel what we feel for even a minute, it would be helpful.
Stay well,
Christine
I have pernicious ENEMIA, rheumatoid arthritis, Epstein Barr and Shogruns. Now I have developed TN. I have also ha shingles twice. I have wondered of the autoimmune didn’t leave Mr susceptible to these nerve issues.
Thanks for your kind reply Karen. I think we both know whow each other feels, for these are invisible conditions. I first started with TMJ years ago after a car accident. I got ENV in 2008. It just been the past two years that I’ve had TN. My Fibromyalgia was diagnosed 1 year ago. I had never heard of it before & was convinced I had a thyroid problem or was anemic or even had Lyme disease. I have only just found a drug that is helping with the Fibro. It’s called Lyrica. I feel heaps better. Thanks for sharing your story with me. Hugs Sally
Oh hey Christine. You got that right! Don’t you wish sometimes, some one else could feel your pain… Just for a minute! I dont want to sound mean, but no wonder we turn to each other on this wonderful site. Have a nice day Sally : )
OMG, mischief 66. You are such a strong person. You know, some times when you are that sick, you just get fed up & you want to give up! But don’t! You are a wonderful person & I am so proud of you. Just the fact that you are here. You inspire me & the next time I’m feeling down I will be sure to look at your message! Because it tells me, ‘I am not alone.’ So thank you for sharing your story with me! See, after all I’m not the only weird one on here! Lol! Please be smiling right now. Hugs Sally
Hi Candy, my goodness you are having to deal with so much! I know how painful TN is, but shingles is a very painful condition also. Do you have to have monthly injections for the enemia? And the list goes on. My heart goes out to you sweet heart! Keep going! I believe that things happen in our lives in cycles. Although you have all of these medical issues, please find just a little place in your mind every day, where you tell your self. 'it’s okay, things will get better & I believe they will! I will be thinking of you & wishing you well. Please message me anytime. Hugs, Hugs, Hugs! Sally
Hi dsm, Yes, I know what you mean. I always feel that I have to explain or validate my self. Because I’m sick, yet people just assume your fibbing because you might happen to look okay. Grrrr frustrating! I guess that’s why we keep our illnesses to ourselves alot. Except in situations like yours where it’s your employer. I no longer work. I used to be a very successful Real Estate Agent. But when I got sick, I took time off, then went back. Then I had to have more surgery & I was very ill. So I lived off my savings for a year, still trying to live the lifestyle I was accustomed to. But I did not get better. I just got sicker! So I had to give in. I became depressed etc etc etc! But I feel as though I am feeling a little better each day now! So there is always hope & there is always purpose. Remember, every thing changes. Thankyou for your nice message. I’m sending you a big hug! Sally
Hi Jstagrl29, Yes I know exactly how you feel about the ‘gash in your leg’ lol! Funny thing is last month I was in hospital and all of my meds were changed! So I was feeling a bit spaced out & tripped over. I hit my chin on the corner of a wall & fell really hard on both knees & even damaged a nerve in my elbow! Anyway my knee was so swollen that the doctor had to wrap it in this huge bandage. I had to have all these x rays etc! But the funny thing is… I wish I had a dollar for a every person who asked me, ‘oh are you okay?’, can I help you with that? ‘OMG!’ what happened! Thing is, my TN was hurting so much more than any of that!
Any way precious, thanks for listening. Hugs Sally
I know exactly what you mean about our "invisible" diseases. I only have the TN, but I have told people that the only way I know to describe it is to put a dog shock-collar on their jaw and turn it on 100-200 times a day, every time they open their mouths and then they would know how it felt. I had a few laughing when I asked them if they would let me do it so they could see, LOL! But I think after telling them that, they got the idea. And I sent them articles about it too, so they could REALLY grasp what was happening to me.
Hi Donna, at least you can get your frustration out here! Because we all know how it feels. Please don’t use that shock collar on your dog! I love animals & would never use it! Save it for those people who don’t understand & just don’t believe your pain is that bad! I think most people just think you have head aches or migraines! Thanks for your reply. Lol. Hugs Sally
Sally,
thanks for the hugs. Yes, I inject 2 times a month. I actually deal with my problems quite well, but TN has thrown me for a loop. My pain is managed right now, but the meds are difficult for me. I am a very active 59 year old and these meds on top of chronic fatigue is hard to bare. I just took my grandsons home, and I was thinking that three weeks ago I was begging for the pain to stop and now I am hating the way I feel on these meds. I will not give up. Don’t you give up either. :-))))))
I ask believe I have chronic fatigue syndrome.
"If only for a minute." How many times have I had that thought? Unfortunately I have experience early retirement as a result of the pain, and, no doubt, the medication I use to manage (too strong a word?) it. My boss could not understand how I could write so well and then, at time, so incoherently. Edits were obvious, but it takes twice as much time to work and then to review your own work for errors you would never have made before. Even I underestimated the cause of my cognitive disfunction at the time, so I never made excuses. Fibro fog. TN. It was them, not me. At home, the same dynamic is at work: sometimes my family, who know of my illness, can't take the fallout; the irritability, the begging off, the negativity. Thank God I have a wife who is naturally sunny, but all too often I rain on her parade. Therapy may have helped a bit: she's still here with me, though I'm sure she didn't envision "growing old together" quite this way. How could she? She doesn't know what it's like to live inside my skin and she never will -- unless Apple comes up with a eMpathy Pod.