The body symptoms are really getting me down. I tingle head to toe, but mostly from the hips down. It’s not that “cute” annoying tingle you get when a body part has gone to sleep and its waking up. No. That, I could cope with. This is intense, burning, tingles, bee sting, and a sense of muscles writhing around, and the sensation of being crushed, all at once. I can’t distract from it. Wish I could.
Today the burning/pain/throb in my upper spine is nasty. I have head pressure, jaw pain, tooth pain, ears ringing (always) chest pain, benzo belly, fatigue, intrusive thoughts/obsessional thoughts, tight band around head and chest, and more.
I am weary. God, I am SO weary.
I have stopped praying for healing as that was clearly a lost cause. Now I pray for the ability to hold on and cope. Some days I am pretty good at it. Today, I am not. I want so much to be/feel normal. I don’t want to think about death, benzo, withdrawal, anxiety, fear, sickness, existential thoughts… I just want to live in the moment, doing what needs to be done. Like my old life.
I want to be able to travel. Go places. Do things. Without fear. Without an effort to walk around.
I want SO much to get off this couch and out into the world.
I am feeling rather sorry for myself today. Sorry for all of us battling this syndrome that so few people understand.
I worry that these are my golden years. I hope I don’t spend many more of them sidelined. I don’t know how many more years I have, and to think they may be all spent on my couch, or in my garden makes me very sad.
Hope everyone else is feeling better. If you are not, know that you are not alone. I’m right there with you, feeling like shit and being very sad/angry/resentful about it. I know I have to practice acceptance, but c’mon. I’m human. I am allowing myself a few minutes of venting.
Does this shit ever really end? I wonder. I really do wonder. My body stuff is different and worse in some ways than it ever has been.
That’s all I’ve got today. Sorry it’s so downbeat. I’m worn out.
Im so sorry for the way you feel. My wife is feeling the same way. It feels so endless to her also. Please keep up the fight, it can be won. Others have and so will you
Jenn, the timing on your message was uncanny. I just walked in the door balling my eyes out because I tried to go to a movie and it was miserable. I was so sick of watching my husband go off and have fun and me stuck home again. I understand how you understand about the golden years. I just celebrated (?) my 60th and it was sad because I felt I had lost most of my 50’s. I am one month shy of 5 years and so desperately feel like its never going to end. I need to hear that there are others that have taken this long and still recovered.
Let’s you and I pray for each other because like you I quit praying for myself because it doesn’t seem to help.
PS for your information I bet I am the only one to cry through the movie” Dolphin Tales” because the dolphin suffers from depression. Thank God there were only 2 others in the theatre. Some day it might be funny but its pathetic now
Sorry you are suffering.
Geraldine Burns, one of our pioneers said she didn’t start feeling better until five years out. It took her 11 years.
I think five years is a turning point for many. Keep holding on.
What else can we do?
I used to believe the bible verse that if you prayed with the faith of a mustard seed you could move mountains. I prayed believing totally that I would be healed and back to work quickly. Hell, at four months off I opened a new office and tried to see clients. Waste of time and money. I’m 38 months out and still can’t work at my old profession. I’ll never go back to it. I truly thought god would answer my prayer. I prayed with such faith. No such luck.
Maybe if we pray for each other he will listen? 🙂
Sending you good energy. What little I have.
Prayers are being lifted —
Jenn, Regarding your symptoms, are you sure there not some of them from what you had wrote a few months ago; A possible autoimmune issue going on or did you already rule that out? I remember you stated that your blood work showed a possible auto immune issue…
I hope you starting feeling good again….
My heart breaks for you and Shari because you have both put in so much time. Unfortunately, so often our timing is not the same as Gods timing. But when it is Gods perfect timing,it’s going to be awesome. You won’t want your old life, because the new one is going to be fabulous 0ur golden years are going to be great. I’m right there with you. We’ll have a big celebration. Could our age possibly have something to do with healing?
My immune sx is pretty tanked. But why would that cause all this. ? Tired yes, but buzzing burning boaty etc?
I can’t believe Wd is over and some mean disorder has taken its place. But who knows? Maybe I got in the wrong line when they were handing out fate. :(.
I’m holding you to that. !! It better be awesome. And gods perfect timing is pretty strange. But I’m not god. Maybe he likes toying with us. Who knows. Maybe we are all just part of his video game. 🙂
Jenn – I just sent you some $$ by Paypal. Hope it helps. Thank you.
My physical sx’s seem to be getting worse too (31 months). I’m chalking it up to being so completely exhausted that my body just can’t take it anymore. I mean, really! I haven’t slept more than 20 minutes every few days for over 2 YEARS!! & that’s toxic sleep that I’d rather not have anyway!
Also, I read somewhere recently that benzo wd can cause autoimmune diseases, but can’t remember where-benzo brain! If I can track it down I’ll send it to you.
All we can do is hang on, keep going & not give up.
God has answered our prayers-we just really don’t like the answer: only time will heal a broken nervous system. (Hey, there’s gotta be a catchy tune in there somewhere! Maybe a new country hit-“The Benzo Blues”, performed by “Buddy Benzo & the Brain Zaps”! Gotta keep laughing, between crying jags!
Aw..sorry Jennifer : ( I feel that way..its discouraging..i want to cry, swear, n moan it all out n worn out n it STINKS.. i believe thats alright. God would not have put it in the heart to keep at it..a light n to all..knowing full well how much stronger u n all of us are and 1 day will be kinda complete.. depend on Him always n higher power..were NOT perfect..it does help seeing this n relating w/all of the support..we R trying..im not alone on this journey as the world doesnt quite c the truth..hope ok w/words. Prayers..
Jenn, I’m no medical professional by no means but being that you are three years off benzos its worth finding out If its not another reason for horrible symptoms that you’re still having. I think its worth exploring…
PS I would like to donate some money to this site, but don’t like using sites like paypal….. had a bad experience once… If you could email me your mailing address I would be glad to help.
Plese remember as I also try to remember; ” Everything happens for a purpose” I know its easier said than done, but what other good options do we really have?
I haven’t been on this site since April. Right before Easter my boyfriend was once again at deaths door as HS blood was septic with yet another bout of pneumonia. I was fighting my own battle with the benzo w/d and a blood clot which would not resolve. I was a millionthof an inch from killing my self. Instead I popped one of my boyfriends clonazepams. Took 2 a day within a week I was feeling human again. My eyesight cleared enough for me to drive an hour to see a shrink and now am back on clonazepam. I am lucky because I was into 4 months of c/t w/d.i still feel some weirdness Fromm my cns, still some burning but oh gosh I am glad I did it . I am living again.i have to admit Ii am frightened of being in the clutches of a benzo again. The future scares me horribly. But I don’t think I can go through a w/d again. Certainly not c/t. I never never never want to feel that way again. I just turned 65 and I want a little happiness. I feel like a time bomb because of 8 months of the blot clot not disolving . I could drop dead from a pe or a clot in my heart or brain. I know I cannot go without my evil k or I would make use of the large amount of morphine we have and I don’t want to do that. I am so completed despairing for all of us who were given this drug so heartlessly and left to deal with the ensuing Hell. When I read of the length of time people like you have been going through this and still grasping on to hope..I don’t know how you do it. I hope we are all enveloped with positive thoughts.
I cannot believe all the things I have read to you and how similar the things that you are going through are EXACTLY like mine and how I feel. You have brought me hope that I am not the only person in the world going through this. I know I have not found a doctor to believe me. My wife I think is very tired of hearing it. I just ask that you keep fighting with me and know that there is someone out here that feels just like you.
Keep fighting, I know we will WIN!!
This is so difficult and I am sorry I struggle with worries of if and whether it will get better, in whole or in part. Then again I have to face the fact that in my case, there is part of it that is Lyme disease and will not go away if I don’t deal with that. Is it possible that you are dealing in part with something like that? They don’t call it the Great Imitator for nothing. Working a lot in a garden might make you a more likely candidate…then again facing the thought of treating lyme while in wd is threatening…daunting. How I wish it was otherwise. I am 21 months out this week and not looking forward to an open loop of ‘recovery’.
Thanks so much for your blog comments. You help validate my jpurney as well. God will heal us in time. Patience and when we are feeliing well dont go overboard and overstimulate our systems, we are still sensitive even when we think we are healed. I know, I was 90% better after 4 years and went back in the tank from a dental visit, swallowed uncured epoxy from a temporary crown and whooooo, next 3 months were hell again and now after 2 1/2 years I am seeing some light again. Funy after starting to paint again, got hit with bad symptoms as well, gonna not paint for some time even though it is relaxing. Peace and God Bless you. Joseph
Im not sure what I have.. just wd? Lyme? My son had lyme. So … who knows. I’ve watched him over the years treat with the most god awful drugs and he is better but not healed. I am not going to go that route. At least not now. I am starting a diet to help eliminate inflammation. Thats about as far as I am willing to go. No more pills and NO way I’d put in a port and push antibiotics through my body. No siree…. 🙁 I wish you the best on your healing journey.
I hope you are feeling better Jennifer!I wanted to ask you if the dizziness ever lets up?Im 5 months off Lorazapam,and the dizziness,jaw pain and ear ringing is just awful.The anxiety lets up a bit,but I do have very bad days with that too.The dizziness is the worst.Ive had it for 3yrs.
Hang in there Jennifer…my story short version.. “Nam” vet…was a nervous wreck when I got back…was on valium for 13 years and the last five of that I added methadone….needless to say I was a player in some weird universe….turbulence abound…ended up in jail for 6 weeks of hell….cold turkey-ed off the valium and methadone….almost died…it was my choice…decided to live…heart almost stopped…I was lucky I was still in my thirty’s….it beat me up pretty bad…28 days of no sleep…hard to believe but true….after I got out I was a wreck as you can imagine…still wasn’t getting much sleep and high anxiety but I hung in there….I just stayed with my pain and it took everything I had at times….had to take baby steps for at least the first year….second year still fragile emotionally and physically….here is what really accelerated my healing process….started taking vitamins, high doses of Vit C, B complex, straight magnesium to bowel tolerance….I also started doing low dose lithium,,,health store kind…look up the research on it….physical exercise daily…start slow but keep it up! Sauna’s 3 or 4 times a week…really helps….got off wheat and dairy….probiotic’s to repair the gut…drink pure water…I think 5 years is the magic number…..though each month seemed better than the last….I also went to NA …the support was critical in my early fragile state…I have been drug free for 28 years…those years on the benzo,s are just a blur….it is a full time job recovering but I will say that pain is a motivating factor and I really accelerated alot of emotional healing because of it….if I can survive and thrive….I KNOW YOU CAN….let me know if I can help….
It lets up for me some. But I still get bouts of it. MIne isn’t vertigo, its more like woozy feeling.