Guess I’ll have to pray to her, as God doesn’t seem to be listening these days. I mean really. I keep praying for healing but… the wave just keeps gets bigger and bigger. I’ve been mostly bedbound the past few days. I have a lot of sx I had in the very beginning and I have to say it is more than a little upsetting. The mental crap is better, for sure, but the body stuff is agony.
I won’t list all my sx here, as that’s just too depressing. Let’s just say that 27 months off is proving to be a bitch. I was having more good hours than bad, and thought rather smugly, that the worst was over. Never get smug in wd, that’s what I am learning now.
I read so many emails or comments from people saying they find hope here in the blog. That was my original intention. Spread hope. But today hope is hard to come by. I’ve already had a crying meltdown on the phone with my daughter. I. Just. Don’t. Want. To. Do. This. Shit. Anymore. Period. I am tired of the burning, pain, tingling, weakness, dizziness, broken sleep, nerve pain, fatigue, head pressure, memory loss, chest pain, spine pain/burning, joint pain, bone pain, stomach issues, itching skin, itching ear canals, vision disturbance, feeling like my body is being crushed, freezing, hot flashes, formication, DP and DR, feeling like I am moving when I am sitting still, twitching…..Ok, so I listed my sx… or at least some of them.
I read stories on recovery_road.org and get scared that I STIll have years ahead of me. I used to comfort myself early off, telling myself that it would only take 2 years AT THE MOST, to heal. Two years. Two years. Two years. That was my mantra. I blew past 2 years a few months ago. Now what do I tell myself? Three? Four? Five? Fifteen?
I am losing hope that we ever do heal. Sorry. But that’s the truth. I see people years ahead of me having setbacks. It isn’t reassuring. I wish we knew what was causing these sx. Why is we have many of the same sx that people with Lymes disease, MS, lupis, CFS and fibromyalgia have? What in the world is going on inside of our brains?
A friend in withdrawal just came over. Misery loves company. I am grateful for my wd friends. No one else on the planet understands this torture.
Hang in there everyone. I will too. It’s getting old, this journey. Very. Very. Very. Old.
*Sigh.*
Hi Jenn, Just wondering if you might benefit from contacting Fred Davis, the man who does my taper. A lot of the symptoms you describe, are similar to what he calls Vit. B12 deficiency, and he thinks I have a lot of those deficiencies too, as i previously mentioned, and I’ve been taking “some” of his supplements as you know. I’ve been feeling like a mess, too, and don’t understand why. I would love to be of some comfort to you, as this is a living hell, and you sounded so much better before. Please let me know if I can comfort you in any way, and if you want Fred’s phone number or email. It is certainly worth a try. love, Aryana
I am thinking of you and struggling with you! I am glad you have a friend over. Someone who understands.
Who is Fred Davis?
Hi Jenn, I am still in taper. I am very lucky I don’t have to work. Was on them 25 years or longer. If I taper to fast all hell breaks! And if I do to much it will hit. I am alone on this no one to talk to just read. Wish people were not so scared to give phone numbers I know if I had someone to talk to I would feel better hearing about the pains if we all have the same thing going on. Yesterday I had to go to Philly Pa to Thomas Jefferson’s hospital I need sinus surgery and have my nose fixed. To get showered and dressed and drive down 55 miles come home make something to eat I was dead all the pain and everything all over. I found I must just do little things and rest for a while . Today I went out and cleaned some of my yard came in fell asleep and woke up to such pain in my arms. So now I am sitting her writing to you I hope you don’t mind. I wish I could have someone to talk to . I am so sorry about you seem to go backward but if you are like me we just do to much. If anyone would like to talk call me 610-939-8940 thanks and hope everyone of us well! Tommy tberg1322@aol.com
Aryana – where is your doctor? Can she call him?
Thanks for the concern. I don’t want to work with Fred, but thanks. I know the B vitamins can be tricky to take in wd. I don’t recommend that people take supplements in wd as so many people have problems with them. I know we are all desperate for a cure, but alas, I think it is mostly time.
I feel your pain..hang in there. I have other health issues besides post ed from benzo and still feel a lot of what you talk about. This totally off the subject but I have found out my ferritin level is super low…so maybe get that checked if it is low it could be contributing to all ur post wd symptoms…I don’t know when I will feel better ot what all my pain is from but hoping it gets better in time. So keep hanging in there and make sure you get ur ferritin level checked.xo
I just read the above posts and taking supplements I’m not a fan of this..but since I got my ferritin level checked and its way low I’m taking vitron-c a iron supplement and you should only take iron if a doctor monitors you and tells you that you need it…but having your ferritin checked is a key in making sure your checking everything. I think this is making me feel so sick along with my post wd from benzo.
Hi Jen,
I have been following your blog for some time now. I am thinking I could provide you with some vital help as you continue to work through your condition. Please visit this site and let me know if you would like to at least have an initial session?
Tommy, some of us are so sick that even a phone call is not a great idea. Maybe you would like to go on a forum, like benzo buddies. People in withdrawal tell their experiences and offer support too. That way you wouldn’t feel so alone. You can join in the discussions whenever you feel well enough to do so. Hope this helps!!! You are NOT alone!
Tommy, people will talk to you if they get to know you first. I have a small group of benzo friends that I talk to regularly. I met them on one of the Facebook groups for benzo withdrawal. So that’s a good route for you to go.
I can relate to this blog post. I have my own blog which I used to post to semi-regularly. I meant for it to give hope to those earlier on in their benzo recovery journeys. But when it became apparent that I was going to be a protracted benzo sufferer, I pretty much stopped updating my blog. It’s tough when you want to be real, but worry that your story will scare the newbies. Still, I think it’s important to put it out there and I’m glad you’re doing so.
Here’s my take on scaring the newbies: honesty is the best policy. First, when I was 3 months out, someone told me that the symptoms I had would be the ones I battled from there on out. That I would not get new ones. I believed her. So you can imagine my horror when things started to change and new sx appeared. I worried something was drastically wrong. Remember early off it was hard to be rational, so I was super worried.
Second, Everyone kept telling me 6-18 months. So at 18 months with little breaks from the sx, I was bordering on devastation. Then people kept telling me two years. That was what I held onto. The hope that 2 years it would be better. So when 24 months rolled around and I was still waking up to the burning and tingling, pain etc, I was pretty much bummmed out big time.
I don’t think we do the newbies ANY favors by hiding the fact that for some of us, the healing journey is a long and tortuous one. Hiding that fact feels like offering false hope. I am more than pissed off that some of the people ahead of me healing made me believe that 2 years everything would be better and that we all heal. I am now realizing that we dont heal 100% We will always be a bit susceptible to relapsing if we have too much stress in our lives. Old sx can return many years out. we need to always practice extreme self care.
So that/s my take on things. People need to know that this can be a very long and hard battle. Is it worth it? I don’t know yet. I’ll let you know my take on that when I am more recovered.
I dont think its fair to those of us who are in protracted withdrawal to hide our stories and not get support because we have to worry about scaring the newbies. I for one am NOT going to sit back pretend that life is fine. I did that for many many many years growing up and that is what helped get me on this shit in the first place. I believe in rigorous honesty. And my truth is that I still have benzo withdrawal sx that are very hard to cope with, especially because they have gone one for a very long time. I as on that crap for 18 years. If I could sue the doctor who put me on this shit, I would.
Perhaps you can tell I am a bit angry this morning. I am so tired of waking up sick. 🙁
So newbies, if you are reading this, know that for some of us, healing takes years not months, especially if you were on long term. Not all of us get hit like I have been hit, so you may heal quickly and with few sx. I wish you the best on your recovery journey.
Stacey
if you are following this blog then you are aware I, and the others who follow this, are in benzo withdrawal. It causes anxiety, pain, depression, weakness, etc. Most of us here are not battling “normal” anxiety. If you have read any of the links on my blog then you know that people who never had anxiety become terribly anxious, paranoid and terrorized in withdrawal.
I have posted your comment with the URL link removed.
While on one hand, I can sense your desire to help, on the other, I feel it is inappropriate to troll this site in hopes to find a new client to make money off of. We are not anxious because of life circumstances. We are anxious because we have damaged GABA receptors, which means we have a glutamate “heavy” brain and body which means a whole host of problems.
Thanks for not “ambulance chasing” on my blog.
Jennifer
I am with you–I am tired of waking up sick!!!
Dear Jenn
One thing I can see in following your blog is the roller coaster ride of emotions as well as symptoms. I find this somehow comforting because I thought it was all me and my inability to”handle” my awful anxiety and fears…that I was weak not strong. But we are going through this. Overwhelming symptoms. I pray to the blessed Mary and to our Lord each morning and evening but having not often asked so desperately for answer to prayer, I am discouraged. Please know that you are in my prayers and I hope this wave is over for you. I haven’t had any real windows, very little relief. Thoughts are negative, fearful and depressing and along with them comes my trembling and shaking, heart racing.
God bless, Karen
Dear Regina
I also have bad mornings, full of no hope and waiting for worse
Symptoms to come. I am so sorry for your pain.
Karen
Dear Jenn <3
Im Now trying medical cannabis Oil ……we are able to buy this in DK, and yesterday I talked with a Young guy WHO was Like me praying to god each Day, enstonige to die and leave this hell.
He had 28 pills each Day for 3 Years, Benzos and lots of others antidepressives, psykotic medicine and medicine for medicine, medicine for asthma, medicine for diabetes 2 ……. After about 3 weeks on this medicine cannabis Oil he was freeeeeee!
He says life is better than ever, he is Now Living a normal life again.
Menopause, and Lymes can cause same symptoms, and I have it all, even Lymes is being threated with this Oil……..cost a lot, but I Now only have everything to win.
Thinking of you <3
Gitte from DK
PS! Sorry about the spelling, have lent an IPad, my pc is dead and Im not able to buy a new one……so thats why words goes wrong……. 😉
Hi Tommy up there, if you want a friend, Im here…..in Denmark.
Facebook my name is Gitte Forsberg Bøjsen
I Think we need lots of friends in this hell of WD from Benzo……..
And Jenn I have all the symptoms you mentioned and feel the depair, and when I look back at my life I can recall early symptoms, but didnt know then What it was, it always weaned, but with time sx has become Closer and Closer………and Like you, I have the thought about if we Will ever heal again, but Im here for you, love your site here, so Much love is to be found in this nasty nasty suffering.
Wish I could stop the rest of my Benzo because They scare me to death, TSH last year my sxs has increased that Much and What if…….!?
Love xxx
Well three years to the day feel like shit still I was on 2 2mg clonazapam for 6years went off cold turkey three years ago to the day I have been in hormon replacement therapy because the wd lowered my test levels to almost 0 I felt alright while on the test now I have been off of the test for 3 weeks now and back to the benzo bullshit , sore joints sick stomach . Crazy intrusive thoughts , depresion , muscle cramps , numbness , dereliAtion .cold sweats , shaking , peranioa ,resure in my head , like what in the hell do they put in those demon pills to harm us like that I am so tired of this this benzo crazzieness has to stop three years now and I am still going through this he’ll I have thought I have had every sickness know to man and have been checked I have low t and thyroid problems like what in the hell and why in the hell has no one stopped this stuff from being produced I am a stones throw away from driving my car through the front doors just to get more light shinned upon all this like come on three years allready
Please seek help if you are feeling suicidal! I know we are all frustrated that the FDA hasn’t stepped in and regulated these drugs, but crashing your car isn’t the answer. Be safe. Withdrawal does come to an end, eventually. I’m sorry you’ve been suffering for so long. Some of us do, unfortunately.