12-24 months and up support group

[[La...]]

Good afternoon!  Just wanted to reach out for some encouragement today.  I am really struggling.  So much anxiety, depression, nausea, head pressure, tingling, and the list goes on!  Feeling so defeated.  Lately I have had a very hard time talking myself off the ledge.  I used to be able to grab hold of some positive thoughts and sort of regain my "balance", but I can't seem to do that now.  Everything is just gloom and doom; worried about everything.  I wish I could be more positive and offer some encouragement to those of you who are also struggling, but I am barely hanging on myself!! 

 

So grateful for this group!!

 

Lisa, open your arms….wider…..you ready?

 

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[[La...]]

Stitch:

 

Are you able to put your drug information in your signature and where you are currently?  If not, I totally understand.  It isn't required, it just helps us know where you are in this process.

 

I appreciate your understanding. Though you are right, it is helpful.

 

But they had me on over 15 drugs. I was on at least 10 drugs at once that they kept switching out. benzos not included. They also where giving me four different benos throughout the week. They thought rotating them throughout the week would be good? Then they CTed me off everything except the three listed. Before the CT I was already a mess. This was all under a year. The doctor ignores my request for records so I don't have a complete list of the drugs I was given. I know about 17 of them.

 

Zoloft was the last one I was CTed off. The others on the ones I am still on.

 

I don't have enough room in my sig. I couldn't figure out how to list all them. Maybe if I didn't have benzo brain I would see the obvious way? Like "Way too many drugs" It might be for the best because I do not want to scare anyone.

 

I got drugged because I lost a friend. And drugs were given not counselling. I was grieving not depressed.

The doctor also was corrupt I found out later. He purposely diagnosed people wrong and overmedicated them. He hurt a lot of people. He should lose his licence, but doctors have too much protection.

 

 

Sorry for the wall of texted. I guess I rambled and a lot of it wasn't important to your question. But I really can't figure out how to fit it. 

 

For now I am doing ok. Not great but I am managing. 

 

I just got out of the doom cloud.It will pass. Hang on tight.  When that feeling comes I just have to wait it out and hang on to anything. Hang on until it passes. Hope comes and goes. It will come again. You can make it through. Things seem dark right now. But the nature of withdrawal is that it changes, even if it doesn't feel like it.

Stitch, please excuse my “ French”……what a sick bastard that quack is!!! I’m not going to call him a doctor because he doesn’t deserve that title! Low down f*&#%+! It makes me so mad! Unfortunately this has happened to many many many patients including us. Ruining people’s lives for money. Yes I said it! That’s all they care about. They know certain things won’t help but play mind games to get patients to believe it magically will. Look how long ago Dr Ashton came public with this. So you mean to tell me that they don’t know? Bull butter…yes they do! I personally have had two experiences to where a medical professional accidentally let it slip that they knew. I’m still pissed about that.

I hope you heal quicker and walk into the sunshine of your new life. Love and hugs 🤗

[[La...]]

Thank you Lisa and LadyDen.  Much strength to everyone. Good job on the driving, Bess. I've been terrified to get behind the wheel.

Me too, Pashu. I have to be able to make it walking to even get in the car first. Then endure riding in it before I can even consider driving. I really miss driving and going places. It is a freedom, once it’s restored, that I’ll never take lightly again! Some days I walk to the front of my apartment building and I just stare at my car sitting there. I whisper to it that soon I’ll be driving normal again with no fears, worries or symptoms.  If I didn’t have the windows of my symptoms disappearing or nearly gone, I’d think this was permanent. Thank God for those windows!

I've driven twice but no more, it's not responsible to get behind the wheel with my current cognitive functioning. Luckily I can get where I need to with my bike or public transport. Glad for your windows! Have had no windows myself so the fears of this being permanent have been clouding my thoughts. It's been getting increasingly tough, but eyes on the prize.

Don’t let those thoughts take root! They’re big old lies! It’s not permanent. Time will be your best friend and testament that it wasn’t permanent. You hang on to positivity, faith in God, get support here, let the days of repair add up no matter ho long it takes! You are a warrior! Believe in your healing. Believe it and you’ll see it! I know just about everyone thinks or says they’re the worse case….including myself being completely bedridden for soooooooooooooooooooooooooooooo long! Now I can get out of bed whenever I want, cook for myself, take short walks, take a bath, etc. God and time has proved those thoughts wrong. 

You have two middle fingers, right? When those thoughts pop up….wave hello to them 

[[La...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

Thank you Leann! You’re so right that the mental aspect of this makes it hard to be positive. I’m very aware of that. I’ve had the mental symptoms in early acute and it was quite difficult. So I hope nobody is offended when I express my positivity or encouraging positivity. It certainly isn’t meant to upset anyone or make anyone feel bad if they can’t be more positive. Since I can be then I just try to share it. To bring hope to my loving friends here that need it. That is my only intention. I honestly love you all very much even though I’ve never seen your physical face. You all are my family as well as a few others on another thread. My heart wants all of us to magically wake up tomorrow simultaneously healed together! Wow what a wish!

I’m glad that you’re hanging in there with acceptance and as much positivity as you can muster. Sending you a big hugs. I’m glad you posted because I was growing concerned. 🌹❤️

[[La...]]

Live and Helen how are you both doing today?

Happy healing vibes are sent your way ❤️❤️❤️❤️❤️❤️❤️🙏

[[le...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

Thank you Leann! You’re so right that the mental aspect of this makes it hard to be positive. I’m very aware of that. I’ve had the mental symptoms in early acute and it was quite difficult. So I hope nobody is offended when I express my positivity or encouraging positivity. It certainly isn’t meant to upset anyone or make anyone feel bad if they can’t be more positive. Since I can be then I just try to share it. To bring hope to my loving friends here that need it. That is my only intention. I honestly love you all very much even though I’ve never seen your physical face. You all are my family as well as a few others on another thread. My heart wants all of us to magically wake up tomorrow simultaneously healed together! Wow what a wish!

I’m glad that you’re hanging in there with acceptance and as much positivity as you can muster. Sending you a big hugs. I’m glad you posted because I was growing concerned. 🌹❤️

 

 

 

 

 

 

 

 

No positivity is great, and it does help people absolutely. But having been told couple times I’ll never recover with a negative attitude, wanted to reassure others who struggle with always staying positive that  absolutely isn’t the case. I asked Dr Jen, and she said regardless of whether you think you will recover or not, you absolutely will.

I have spent so long fighting this trying every therapy and supplement going, think sometimes just have let it run it’s course.Not give up more case not constantly fight it. You haven’t offended anyone, we all need people like you to boost us up, give us hope, don’t ever stop. Just wanted to let those of us that don’t really get windows, and get  bad waves, it’s OK to not feel great. Everyone’s symptoms are different, I just got upset being made feel my attitude was hindering my recovery, reassure others it isn’t the case. You are our cheerleader keep it up we need you🤪

 

[[...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

 

Leann i am so sorry you continue to struggle with these mental symptoms day after day and for so long. I am right there with you.  Your words of wisdom resonate with me this morning.  All we can really do is accept, distract, be as positive as our symptoms allow, and wait it out.  You are truly a warrior.  After dealing with these symptoms for as long as you have, I can dare say you are one of the strongest people on earth.  Hugs to you and hope you have a better day today!

[[La...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

 

Leann i am so sorry you continue to struggle with these mental symptoms day after day and for so long. I am right there with you.  Your words of wisdom resonate with me this morning.  All we can really do is accept, distract, be as positive as our symptoms allow, and wait it out.  You are truly a warrior.  After dealing with these symptoms for as long as you have, I can dare say you are one of the strongest people on earth.  Hugs to you and hope you have a better day today!

 

I totally agree! Leann you are a very strong person! I admire that. And you are too JBen.

It is true that no matter if we believe in our healing or how positive we are, time will heal us anyway. But, positives can help ease the journey. It has kept me from breaking apart. This is sooooooo hard to endure. I’m very grateful that atleast I had that positivity to get me through each day.

[[...]]

Good afternoon!  Just wanted to reach out for some encouragement today.  I am really struggling.  So much anxiety, depression, nausea, head pressure, tingling, and the list goes on!  Feeling so defeated.  Lately I have had a very hard time talking myself off the ledge.  I used to be able to grab hold of some positive thoughts and sort of regain my "balance", but I can't seem to do that now.  Everything is just gloom and doom; worried about everything.  I wish I could be more positive and offer some encouragement to those of you who are also struggling, but I am barely hanging on myself!! 

 

So grateful for this group!!

 

Wow that is a long list of symptoms to have to manage all at once.  It is ok to feel defeated.  It is ok to feel whatever you are feeling.  Be kind to yourself and let whatever feelings come your way happen.  It is sometimes cleansing to just feel anything.  You will get past this.  Our bodies are meant to heal.  Hang on as best you can.  You will feel better.  It may take some time but you will.

[[Ga...]]

Good Monday Morning Fellow Buddy Friends😍.  I have been somewhat MIA for a couple of reasons:  trying to get my poor hubby through a case of the shingles, and an onset of neck, shoulder and arm pain.  Quite the ordeal between his meds and a recent X-ray, now to be followed by an MRI:  it is suspected that on top of some pretty bad arthritis he may have a pinched nerve!  He is finally feeling somewhat better after a six day course of prednisone.  He has also been able to take an antiviral, a week of gabapentin, and prednisone, only to suffer a little stomach upset……I am happy for him, but sure wish that we all had better luck with so many drugs.  Anyway, he is now all set for the time being.

 

As for me, I have been doing quite well until yesterday when I started with the female symptoms again, after having been treated for a UTI just a couple of weeks ago.  I feel like the yeast infection may be trying to take over which worries me as I am scheduled for the uterine biopsy this coming Thursday.  I am drinking lots of water and praying that these symptoms fade away quickly.  The one dose of Diflucan I took three weeks ago zapped the yeast infection quickly.  It seems as if my whole gut and female systems are out of whack.  I think I will stop the heavy duty probiotic and see if that helps. So that is my story and I am sticking to it!

 

I am saddened to read that there are still quite a few buddies going through the misery of BWD, all pretty much in the same timeframe.  When I feel awful I just go back and read over and over again the success stories to calm myself down.  Does it get rid of my symptoms…..NO!  But does it allay my fears that my mental and physical pain is forever….YES! 

 

So, we soldier on, one little step at a time.  That’s all we have to do…..step step step!

 

Big hugs,

 

GG

[[le...]]

Hope you are all doing OK, still struggling bit here. Sort of in acceptance mode at moment, realise this takes as long as it takes, trying to distract is good, but trying keep fighting it , or pushing yourself too much, doesn’t make you recover any quicker, I just end up more frustrated and depressed. Try keep remembering what Jennifer Leigh said everyone recovers regardless whether  you think you will or won’t, but obviously if you are more positive person like Lady Den helps the journey, and makes everyday life more tolerable. But for those of us struggling, who find positivity hard ,believe me  with mental symptoms it’s super hard, it doesn’t mean we won’t recover. My words wisdom for the day😃

 

Leann i am so sorry you continue to struggle with these mental symptoms day after day and for so long. I am right there with you.  Your words of wisdom resonate with me this morning.  All we can really do is accept, distract, be as positive as our symptoms allow, and wait it out.  You are truly a warrior.  After dealing with these symptoms for as long as you have, I can dare say you are one of the strongest people on earth.  Hugs to you and hope you have a better day today!

 

I totally agree! Leann you are a very strong person! I admire that. And you are too JBen.

It is true that no matter if we believe in our healing or how positive we are, time will heal us anyway. But, positives can help ease the journey. It has kept me from breaking apart. This is sooooooo hard to endure. I’m very grateful that atleast I had that positivity to get me through each day.

 

 

 

 

 

 

 

 

Don’t feel very strong, after all my moaning, and I absolutely agree if you can stay positive it does help you get through a lot easier. Just those of us with mental symptoms it is lot harder, and wanted reassure others it’s OK, not to feel very positive sometimes. Doesn’t make us weaker, or a case we aren’t fighting enough, or should push ourselves more , the journey is different for all of us. But if you can find positivity so much the better. Lot focus on mental health here after lockdowns, the slogan is “ it’s OK not to feel OK” quite apt. Keep spreading the positivity LadyDen, hopefully it will rub off. Got cross the ocean mind you to get to me❤️

[[Fo...]]

Fox, when I was in tolerance w/d I went to see a Neurologist and he ran an ANA blood test and it was positive and high and he told me I had Lupus, and then he did an EMG test and noticed that I had Carpal Tunnel Sydrome.  And then I was referred to a Rheumatologist and she ran another ANA blood test and it was positive, and then she ran more blood tests and diagnosed me with Raynaud's Syndrome and the Lupus was confirmed.  I have a procoagulant antibody in my blood called Anti-Beta 2 Glycoprotein 1 (IGM).  I also went to a Hematologist then and he diagnosed me with Thrombophilia because of my procoagulant autoantibody in my blood.  I'm at risk of stroke and heart attack.  Maybe you can have your doc run an ANA blood test which screens for many autoimmune diseases?  I was told to take Plaquenil for the Lupus, and I took one pill and it made me feel very bad.  Then she wanted to give me Gabapentin, but since I'm prone to depression she wouldn't give that to me.  Then she gave me a script for Seroquel and I got that filled and took a bit of that for awhile, but it made me feel horrible.  So now all I take at bedtime is a baby aspirin or two.  I also was diagnosed with Lupus Encephalitis a few years ago which explains the severe head pressure I've got all the time.  Also diagnosed with Memory Impairment, Amnesia and Stuttering too a few years ago.  Also diagnosed with Paroxysmal Tachycardia too a few years ago.  This all explains why I'm so sick now.  The drugs have damaged me severely.   

It's weird I have, all the things you have and I actually am getting those blood tests next month for the clotting factors.  Do you bruise easily ? I developed raynauds during withdrawl or as a reaction to buspar, not sure which .

[[de...]]

Leeann:  So glad you posted!  Hopefully things are starting to calm down a bit for you.  Whoever told you that you will not heal as long as you have a negative attitude is completely wrong.  You can't stop the body from healing.  That is what the body does.  It heals!  It regrows!  I have a friend who just donated 3/4 of her liver to her brother and within two weeks her liver had grown back to its full size.  Our body heals and there is nothing we can do to stop the healing process.    You will heal no matter what.  Unfortunately, it is just taking a little longer than you had hoped.

 

Also, I have been thinking just the past couple of days about the differences between people who are struggling with this beast.  It seems that people either have mostly mental symptoms or mostly physical symptoms.  Very interesting.    My symptoms have been mostly mental, however, I do have some physical symptoms as well.  I agree with you in that it is hard to stay positive when your brain has been completely hijacked by anxious, depressing thoughts brought on by benzodiazepine withdrawal, but it can be done.  I spend most of my energy each day trying to redirect my thoughts.  The way I do this is by reading stuff that is encouraging, watching uplifting things on Netflix, talking to my friends who are encouraging, talking to God and reading His word, talking with my husband who is extremely positive, reading LadyDen's posts over and over again.  I realize I cannot trust my brain/mind; it has been hijacked by this chemical madness.  I cannot trust what it tells me about today or about the future therefore I have to look to people that are more rational than me at the moment and believe what they tell me.  I have friends in my life that knew me when I was well, and they keep telling me that I am getting better and that I will continue to get better.  Have they ever been through this?  No?  But they have listened to me and researched this themselves and they know that everyone heals. 

 

I am so grateful for LadyDen, GG and others who are able to speak truth into this very difficult situation.  The truth is:  we all heal.  Yes, if we are looking for a 1 in a million case of someone who doesn't heal we will find it, but we don't know that person or their situation.  They may not be telling the truth, they may have a previous mental illness, or any assortment of things of which we are unaware.  Chris Paige, a therapist in West Palm, whom I meet with periodically who has gone through benzo withdrawal told me to get off this forum because there is so much doom and gloom on here that is not based in reality.  And he knows; he has been on here for years and knows a good bit about some of the people on this forum.  Jennifer Leigh, who is a friend of mine, told me the same thing.  I have chosen to stay engaged primarily with this group, but I have to be very careful about venturing too far into other threads.  There is some scary stuff on here written by people that are complete strangers. 

 

Anyway, I am just telling you this to try and encourage you.  You will heal!    I had someone tell me the other day to look at this as a season of my life and to picture myself getting to the other side and what that will look like.  That was such a great thought.

 

Hope you manage to have a decent day today.

 

 

[[Fo...]]

Fox, I’m not sure but it could be a combination of kindling and buspar. Because you were in unknown WD, your body could have over reacted to the buspar. Unfortunately there may be no way of you ever knowing so if I were you I would just not dwell on it….let it go. What’s more important is that we heal.

This is why I don’t sit and waste too much time trying to figure this out. And also I’m mindful that there must be a good reason why we can’t figure out this. Possibly it is for our own good not to know too many details. We probably can’t handle it. So I focus on as much positivity as possible. To feed my brain some goodness. 

 

Thank you for taking your time, it means alot...I always say that but you just don't understand,  I am so thankful for your time. I was doing well around 7 months by ignoring symptoms and pushing myself more and staying busy despite the early hours of crazy.  I then started a new job and was what seemed like thrown back into acute, I couldn't handle the stress and driving and when I decided it was too soon and quit I really started allover with panic and dysregulation.  I started feeling freezing alot and clammy, what's strange is for most of this I have had extreme body pain, and now the pain has lifted some but I am back to very anxious.  I will take your words and apply them to my daily.  I am alone most of the time and it can be very scary. Thank you so much

Thank you for sharing. I’m sorry you’re alone often. I’m also alone physically most of the time. I know what that’s like. I said physically because I know God is with me for he is omnipresent. That makes it alright in my world. He made me a very creative person. So oftentimes I play games online with others, visit zoos aquariums museums monuments etc around the world on YouTube. It serves as a great way to go somewhere even though I can’t physically as well as learn things. Perhaps give it a try? I usually pick a country a week and go from there. Gives me something to look forward to the next day. 

Oh I almost forgot…..there are also live cams of zoos and national parks 

With time things will settle down. Be encouraged my dear!

 

This Is such a great idea ! I never knee about it. =]

[[Li...]]

Hello to all my buddies,

 

I feel very overwhelmed and hanging on barely. This intense chemical fear is worse than anything I've ever experienced. It has actually ramped up even more in the last day or two last night was unbearable and today I can barely get through a minute at a time. I don't understand why it's gotten so awful. I'm really scared. I have other symptoms too. I'm so sorry, I want so badly to post something positive. I really need help and encouragement. I'm trying so hard to stay positive. I don't know how much longer I can endure this level of intensity. Sure hope it gives me a break soon. I do know when we're in the thick of it it's hard to see our way out. I'm sure there is a way out, and I do think it could be soon because it's been so bad. I always appreciate  LadyDens  positive posts.  And I know exactly what you were saying Lisa about reading negative posts, won't do us any good. We don't know someone's life and what they're going through or what they're doing. We have to try and stay positive and believe that soon we're going to turn a corner. Look to others who speak truth when we can't and God's Word, Psalm 119:105 it's a light to our roadway. And I really love Philippians 4: 6,7 where it talks about not being anxious, pray and look to the peace from God. I really appreciated your post Lisa. Even the main Forum can have scary posts. And you can stumble on them without realizing what has happened. We all will heal, it could be tomorrow. I just need a break so badly. I know we all do.

 

Sending love and hugs to all!

 

LiveLife

[[de...]]

Live:

 

Oh, I so want you to get a break!!!  Hang on!  Hang on!!!!  I had an absolutely horrific day yesterday, and today I am feeling quite a bit better.  It may not last, but I am just so grateful for a bit of a break today.   

 

It is so very hard to see our way out of the thick darkness that surrounds us.  (I am talking to myself right now as well).  I believe your brain is going through some deep healing and it is trying very hard to reach homeostasis. 

 

You are not alone!    Just get through the next hour and then the next, and you will string a day together. 

 

Keep reaching out!

 

Lisa

[[Fo...]]

Pardon me, I'm writing for my own sanity at times and didn't mean to blow into you all group but I just am so at a loss, i was in such physical pain and now I feel so foggy, I wake up and it's like I don't even know how to function really, new achey legs , not sure why , hip to toe, feels like I'm low on potassium or sowmthing but am not. Feel gait is unsteady and have muscle twitching, tight jaw, sigh.  The issues with this is that the changing of symptoms always seems like it could be an emergency

[[Li...]]

Lisa,

 

Thank you so much! So glad to hear you're doing better today. It all does make sense that I'm doing deep healing and I'm hanging on to that thought. But thank you for saying that, I need to hear it. Today is one of those days that I'm taking an hour at a time. Maybe tomorrow will be better for me and even better for you. That would be wonderful!

 

Fox,

I'm so sorry to hear of your struggles. I really understand. This whole process can really be frightening. You are healing. It doesn't feel like it but you really are.

 

Hugs!

 

LiveLife

[[...]]

Hello to all my buddies,

 

I feel very overwhelmed and hanging on barely. This intense chemical fear is worse than anything I've ever experienced. It has actually ramped up even more in the last day or two last night was unbearable and today I can barely get through a minute at a time. I don't understand why it's gotten so awful. I'm really scared. I have other symptoms too. I'm so sorry, I want so badly to post something positive. I really need help and encouragement. I'm trying so hard to stay positive. I don't know how much longer I can endure this level of intensity. Sure hope it gives me a break soon. I do know when we're in the thick of it it's hard to see our way out. I'm sure there is a way out, and I do think it could be soon because it's been so bad. I always appreciate  LadyDens  positive posts.  And I know exactly what you were saying Lisa about reading negative posts, won't do us any good. We don't know someone's life and what they're going through or what they're doing. We have to try and stay positive and believe that soon we're going to turn a corner. Look to others who speak truth when we can't and God's Word, Psalm 119:105 it's a light to our roadway. And I really love Philippians 4: 6,7 where it talks about not being anxious, pray and look to the peace from God. I really appreciated your post Lisa. Even the main Forum can have scary posts. And you can stumble on them without realizing what has happened. We all will heal, it could be tomorrow. I just need a break so badly. I know we all do.

 

Sending love and hugs to all!

 

LiveLife

 

Hugs LiveLife.  Please dont be sorry about posting something positive.  It is perfectly ok.  We are here for you.  We know how much you are struggling each and every day.  The chemical/physical fear is the worst!  I have had it the last two days again and it is a pefect but horrible reminder of how bad it can be!  I am so sorry you dont get relief from it day after day.  It can take a real toll on your mind, body and spirit! 

 

This is temporary.  It is going to pass.  These words may not provide you any comfort while you are suffering minute by minute but it is the truth.  Please keep going.  Please keep posting. 

 

The biggest, biggest hugs to you. 

[[Th...]]

 

Stitch, please excuse my “ French”……what a sick bastard that quack is!!! I’m not going to call him a doctor because he doesn’t deserve that title! Low down f*&#%+! It makes me so mad! Unfortunately this has happened to many many many patients including us. Ruining people’s lives for money. Yes I said it! That’s all they care about. They know certain things won’t help but play mind games to get patients to believe it magically will. Look how long ago Dr Ashton came public with this. So you mean to tell me that they don’t know? Bull butter…yes they do! I personally have had two experiences to where a medical professional accidentally let it slip that they knew. I’m still pissed about that.

I hope you heal quicker and walk into the sunshine of your new life. Love and hugs 🤗

Oh my goodness! Two doctor let it slip? I can't believe it, how horrible. I hate seeing so many people suffer because of greed. I hate seeing people suffer at all.

 

It felt surprisingly good to hear what you said, when no else would listen. I thought evidence was in my favor. They should make it easier to get rid of corrupt doctors.

But let us move forward into better places.

 

[[le...]]

Hello to all my buddies,

 

I feel very overwhelmed and hanging on barely. This intense chemical fear is worse than anything I've ever experienced. It has actually ramped up even more in the last day or two last night was unbearable and today I can barely get through a minute at a time. I don't understand why it's gotten so awful. I'm really scared. I have other symptoms too. I'm so sorry, I want so badly to post something positive. I really need help and encouragement. I'm trying so hard to stay positive. I don't know how much longer I can endure this level of intensity. Sure hope it gives me a break soon. I do know when we're in the thick of it it's hard to see our way out. I'm sure there is a way out, and I do think it could be soon because it's been so bad. I always appreciate  LadyDens  positive posts.  And I know exactly what you were saying Lisa about reading negative posts, won't do us any good. We don't know someone's life and what they're going through or what they're doing. We have to try and stay positive and believe that soon we're going to turn a corner. Look to others who speak truth when we can't and God's Word, Psalm 119:105 it's a light to our roadway. And I really love Philippians 4: 6,7 where it talks about not being anxious, pray and look to the peace from God. I really appreciated your post Lisa. Even the main Forum can have scary posts. And you can stumble on them without realizing what has happened. We all will heal, it could be tomorrow. I just need a break so badly. I know we all do.

 

Sending love and hugs to all!

 

LiveLife

 

 

 

 

 

 

 

 

I’m 16 months ahead of you live, still not healed but here to tell the tale. Can you watch TV at all, I love Virgin River on Netflix , real escapism, filmed in a lovely setting, the latest series just started, about a community how things used to be , everyone looking out for each other? You  will get through this, doesn’t stay this bad forever❤️

[[Th...]]

decatur

I am glad you are able to take a breath. God knows how precious that is. I hope things stay low key. Keep us posted. Healing is happening in the background!

 

foxclover

I am sorry you are in so much pain. People say mental is worse than physical. But the truth is, any symptom is as bad as any when taken to its extreme. I am sorry this has been so debilitating. I'm sorry your muscles are giving you pain. I wish ice and heat packs could take it all away. The fog on top of the physical symptoms it is so unpleasant. It's withdrawal playing mind games. Posting is good for the soul.

 

Pashu

I had no widows for the longest time. I thought without windows and waves how can I get better? I found a few other like me. The said they slowly healed over time. Don't believe those thoughts. Healing comes.

i

Gardenguru

Its good to see you again. I am glad your husband is feeling better. I understand gut issues, I am about to try an enzyme soon and scared out of my wits that it will set me back. Yeat infections are a stress. I am sorry you are dealing with one. Sitting in a bath with 5 cups of epsom salt for half an hour always helped mine. I would do that a few times throughout a couple days. I found out later it is a natural destroyer of yeast. Hang in there

 

Leann

Ha, never recover with a negative attitude? pish posh.  It was impossible for me not to have one, my depression was one of my symptoms. I would keep saying positive things to myself (as one should) but didn't feel it. And I improved. And now that I am more positive I am waiting again. So that sounds like a blanket statement. Im sure positivity helps i many ways, but it is not the cure. You're a hell of a person. Whether you have positivity or not.

 

Lady Den

Thank you for all the support you give. I hope you are doing ok yourself. Last I read you got hit with a bit of a wave. Hope that is better. How are you doing now?

 

JBen

Good to see you. How are you doing. I hope you had some good moments. I must have missed a few of your post.

 

LiveLife

You deserve more words than I can type. Sorry my pain is getting bad. But keep hanging on. Don't look toward the bad. There is a way out even if you can't see it. If you keep going forward you will find it.

 

Man, It seems like the planets align in such a way that many of us got hit at the same time.

To anyone I missed, keep going and healing to you all.

 

[[Pa...]]

Thank you Lisa and LadyDen.  Much strength to everyone. Good job on the driving, Bess. I've been terrified to get behind the wheel.

Me too, Pashu. I have to be able to make it walking to even get in the car first. Then endure riding in it before I can even consider driving. I really miss driving and going places. It is a freedom, once it’s restored, that I’ll never take lightly again! Some days I walk to the front of my apartment building and I just stare at my car sitting there. I whisper to it that soon I’ll be driving normal again with no fears, worries or symptoms.  If I didn’t have the windows of my symptoms disappearing or nearly gone, I’d think this was permanent. Thank God for those windows!

I've driven twice but no more, it's not responsible to get behind the wheel with my current cognitive functioning. Luckily I can get where I need to with my bike or public transport. Glad for your windows! Have had no windows myself so the fears of this being permanent have been clouding my thoughts. It's been getting increasingly tough, but eyes on the prize.

Don’t let those thoughts take root! They’re big old lies! It’s not permanent. Time will be your best friend and testament that it wasn’t permanent. You hang on to positivity, faith in God, get support here, let the days of repair add up no matter ho long it takes! You are a warrior! Believe in your healing. Believe it and you’ll see it! I know just about everyone thinks or says they’re the worse case….including myself being completely bedridden for soooooooooooooooooooooooooooooo long! Now I can get out of bed whenever I want, cook for myself, take short walks, take a bath, etc. God and time has proved those thoughts wrong. 

You have two middle fingers, right? When those thoughts pop up….wave hello to them 

Thanks for the kind words. I intend to keep chugging on, one day at a time. The head pressure and lack of mental clarity make it tough, but it is what it is. I wouldn't say I'm the worst case as I find people suffering here longer than me, but we're all here because we got the short end of the stick. I'd love to type more but I can notice I can barely formulate any coherent thoughts at this moment so I'm gonna lie down and watch some TV. Keep battling everyone, no matter how dire the situation seems.

[[de...]]

Stitch:  What a lovely post.  Thank you for your encouragement.  I love reading what you said to each person. 

 

Yes, it does seem like a majority of us have been hit with a bad wave at the same time.    I am praying for everyone, especially LiveLife!    And to LeeAnn who has been fighting this for so long....we are with you!

 

Thanks again, Stitch!

 

Decatur (Lisa)

[[Be...]]

Fox, when I was in tolerance w/d I went to see a Neurologist and he ran an ANA blood test and it was positive and high and he told me I had Lupus, and then he did an EMG test and noticed that I had Carpal Tunnel Sydrome.  And then I was referred to a Rheumatologist and she ran another ANA blood test and it was positive, and then she ran more blood tests and diagnosed me with Raynaud's Syndrome and the Lupus was confirmed.  I have a procoagulant antibody in my blood called Anti-Beta 2 Glycoprotein 1 (IGM).  I also went to a Hematologist then and he diagnosed me with Thrombophilia because of my procoagulant autoantibody in my blood.  I'm at risk of stroke and heart attack.  Maybe you can have your doc run an ANA blood test which screens for many autoimmune diseases?  I was told to take Plaquenil for the Lupus, and I took one pill and it made me feel very bad.  Then she wanted to give me Gabapentin, but since I'm prone to depression she wouldn't give that to me.  Then she gave me a script for Seroquel and I got that filled and took a bit of that for awhile, but it made me feel horrible.  So now all I take at bedtime is a baby aspirin or two.  I also was diagnosed with Lupus Encephalitis a few years ago which explains the severe head pressure I've got all the time.  Also diagnosed with Memory Impairment, Amnesia and Stuttering too a few years ago.  Also diagnosed with Paroxysmal Tachycardia too a few years ago.  This all explains why I'm so sick now.  The drugs have damaged me severely.   

It's weird I have, all the things you have and I actually am getting those blood tests next month for the clotting factors.  Do you bruise easily ? I developed raynauds during withdrawl or as a reaction to buspar, not sure which .

 

Yes I do bruise easily.  Sometimes I get bruises and I don't even know how I got them.  One time I fell off a chair backward after changing a lightbulb and I have a very dark bruise on the inside of my upper arm that was about 6" long and 3" wide.  I also break blood vessels in my fingers when I'm outside just using the padded grass shears.  My theory is that these benzo's and Z-drugs damaged our nervous system and our nerves innervate our blood vessels too much and damage them.  Are the veins on the back of your hands and legs ballooned?  Mine are.  Hopefull01, Joey, on this forum complained a few months ago on his blog about how his feet were purple and he believed his blood was pooling in his feet.  Mine used to turn beat red when I'd sit on them and if I even try to now, they go numb.  Circulation problems for sure.