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Nerve and Muscle Pain...4 months out! Need a "pep" talk


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Hello All,

 

After 2 days where I was feeling a bit of a window (I think)...or at least I did not experience burning for 2 days...today I woke up and could hardly walk.  I know that I have what you all call "jelly legs" but besides being weak and wobbly they just really hurt.  I feel like I do something that "damages" them when I actually fall asleep.  (I know that sounds silly)  But it is so hard every night to get to sleep because of the pain in my neck, shoulders, chest, and legs.  Once I do finally fall asleep, I wake up with my legs feeling "twisted".  On those 2 "good" days, my right leg was actually feeling better...but by bedtime last night, both legs felt as if I had been walking with leg weights on all day.

 

And the nerve pain...I HATE this!  Today it feels like there are little teeny tiny fingernails pinching the skin all over my torso...I don't know another way to describe it. There are also so many tender places in my rib cage, both front and back.

 

Even if you have encouraged me before, would someone come back and help me think this through?  I am living with the hope that this is withdrawals, but sometimes I think it HAS to be something more "serious".  (Not to downplay the serious nature of withdrawals...I hope you know what I mean)

 

One other thing...I have started having hot and cold flashes. Can this be withdrawal???  Or should I just assume it to be hormonal? 

 

Thank you, buddies :smitten:

 

~Leena :'(

 

 

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Leena, so sorry to hear this. I am a little over 4 months off of Xanax and I have the same stuff going on. My legs and arms feel like jelly. It feels as though somebody strapped a ton of bricks on my arms and legs and then just walked away. When I wake in the morning after hardly getting no sleep at all my legs are in so much pain. I feel like a big bolt of lightening is running through my nerves. I have been so weak that I feel so fatigue and darn right yucky!!!!! I never knew this was going to be this hard. We will get through this, hang in there. I know we keep hearing that we will pull through so I want you to know that I am here for you and feel your pain and anytime you want to vent look me up!!!!
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A HUGE "thank you" to you, Putter...for letting me know that you are feeling the same things...and you are about the same amount of time off of your benzo as I am. I certainly take no pleasure that you are in this pain, but it does help to know there is someone who is experiencing this alongside me.  Have you had any windows yet?  Have you found ANYTHING that helps?  About all I have found that seems to give (very temporary) relief is sitting in a hot bath with Epsom salts.  I also find that if I can get myself going on something like pulling weeds (where I am exerting myself a little physically on an activity that requires focus) it at least seems to distract from the pain.

 

I ventured into a pharmacy here in Austin that is known for natural remedies and happened to speak to a nutritionist/pharmacist who is the first "professional" person I have talked to who seemed to know what I am going through (with the benzo withdrawals).  She grabbed some 5-HTP off the shelf, along with some MSM and liquid B vitamins.  Told me I really needed to get my serotonin up.  I decided to try these things.  I think the 5-HTP helped the first night I took it, but I haven't noticed any help the past 2 nights.  The B vitamins, I think, had the effect that many on this forum warn about.  It seemed to "rev" up my nerves...not necessarily making them more painful but more alive in a bad way. (What is so weird is that last night I discovered I had another bottlle of 5-HTP and I could NOT figure out why I had it!  Then I started looking through the notes from another nutritionist I had consulted with, and discovered I had already been "prescribed" 5-HTP by him...had tried it and had obviously abandoned it for some reason.  I cannot believe how forgetful I am!)

 

OK...thank you so much again for letting me know about your trials.  I will add you to my prayer list of people to pray for while I am laying awake at night!  And likewise, feel free to PM me if you need a shoulder to cry on :'(

 

:smitten:Leena

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Hi Leena.  Sorry you've had so much pain and nerve issues of late.  B vitamins revved my system up.  I stopped taking a B complex after three days.  I've also been fatigued and just posted about it on a thread that Hope started on the subject.  I agree that neurotransmitters and stress hormones can be out of balance after benzo free.  I've also heard that many women have more symptoms during their cycle and/or impact possible from menopause... Guess us guys have it easy ;).  Anyway, as you know my Shingles virus that I got 10 weeks ago has impacted my energy levels.  I also still have occasional nerve tingle and itching which I hope is not neuralgia and just a sensitive nerve.  I've been tired and had blues for much of the year (got Shingles on 12/31) and I think its benzo related.  Wouldn't surprise me one bit to learn my serotonin might be down too.  I've heard 5htp might be helpful but I also read in some book that it should only be used intermittently, a couple weeks on, then off.  I also read a bit on samE which I think may also increase serotonin.  A member on forum recently told me he started St John's Wort, he did not want to take a full blown A/D.  Well, I guess we all have to make those decisions on our own or with our doctor.  So far, I'm giving it another couple months (to six months) to see if my fatigue and blues don't get better with time.  I may try more exercise as weather improves which may not be an option for you based on your chronic pain.  Well, hope something helps to get you on track.

 

Best and feel better,

 

V (no more)

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Hey leena,

 

    I am so sorry for your pain.  I can't speak to it, but I just wanted to drop in and give you words of encouragement.  It will get better...that is what healing and recovery does, it gets better, even though it may not feel that way. 

 

    I had to discontinue "B" vitamins early on because they revved up my symptoms.  I tried 5-Htp for sleep, but it caused me the worse depression.  The only supplement that I take is omega-3; otherwise, I am on the organic food/fresh fruit and veggie thing.

 

    Throughout my taper and for months after I jumped, I experienced hot and cold flashes/flushes at night; they would wake me out of sleep, and then I would get extremely cold.  I thought at first it was perimenopause, but the flashes stopped back in December, and the hormones are fine. 

 

    If you can muster up any degree of exercise, even if you have to sit in a chair in the garden and use a light free weight, rubber ball or elastic band for exercise, do so and keep the mind occupied, and work the muscles too boot.

 

    You are 4 months post benzo and you are a champion!  You are a hero!  Continue to be strong...and as I always conclude in my posts...stay the course!

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Thank you, Retire and Vertigo (no more)  ;)

 

I appreciate your comments very much.  You both are so helpful to many of us on this forum! I just need to hear things over and over and over again!

 

I still struggle so much with just letting myself accept that what I am feeling is all related to withdrawals.  If I could just do THAT, I think I would be so much better off.  As it is, it seems I am like a ping-pong ball, bouncing between the possibilities of:  fibromyalgia, post herpetic neuralgia, damage from levaquin that I took in September, gluten intolerance, messed up hormones, etc.  It just all seems so overwhelming!

 

IF I had people around me here who really understood the seriousness of withdrawal symptoms, it might be easier for me to just "let go" and believe.  I feel I am constantly having to explain the same thing over and over again (even to my husband).  I wish I had a poster diagram about GABA and that I understood it all well enough to give a decent explanation.  I just get so weary of it all that I don't want to talk to anyone.  I don't call relatives, because I know they are going to ask me how I am doing...and frankly, I don't want to tell them. 

 

SO...thank you buddies, for being there for me and being such a wonderful support group.  I COULD NOT DO THIS WITHOUT YOU!

 

:smitten:Leena

 

 

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Hey Leena I can't give you a whole bunch of advice and I wont try to, but in withdrawal I wouldn't advocate b vitamins or really anything extra. I think vitamins are meant to be introduced in the taper on the way down. "out with the old in with the new so to speak". But having said that. Things like grains,legumes chicken and fish have tons of B's in them and you are getting a complete makeup of nutrients which I think can help enormously. I would stay away from ALL processed food. This is gonna be a hard one, but if you look at food just about everything that comes in a packaged state is this way. I would turn into a vicious label reader and eliminate anything that says things like hydrolyzed,Xanathan,vegetable protein,MSG,aspartame,soy protein concentrate,yeast,BHT, modified corn starch and the biggest one NATURAL FLAVOR a huge MSG hideout that the damn FDA allows. BASTARDS!!!!!!!!  I think we are turning into a SICK (literal sense) society since the  industrialization of food supplies. Our food storage have become LOADED with dangerous chemicals that can excite the brain. Excitotoxins if you will. I think a whole foods diet is your best strategy to build up your body and brain again. I have gotten the jelly legs and still do here and there. Comes and goes along with twitches, ear fluttering, muscle and joint pain, and oh lord some other nasty poop. Anyway I have been going so deep and just keep going deeper into diet and find it to be a factor in getting me feeling better. Anything that we ate before needs to seriously be looked at since I feel we are now "chemical sensitive" we probably were before too, but it never came to the surface until our bodies started to show the signs of problems which is why we took a pill to begin with. Add to that the traumas some of us have gone through and you can see why we are all here together sharing our roads to recovery. I hope you feel better soon.

Your BB,

Rev Blue

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Hello Rev,

 

Thank you so much for the information about diet.  Unfortunately, this is my hardest task to tackle (besides the withdrawal itself, of course).  I know that I need to change and I pick up so many good bits of information from all of you.  I have seen you post on lots of threads about the importance of nutrition, and I usually read all that you have to say.  Is it really true that MSG is disguised like that in lots of things?  I always have read labels to try to avoid MSG...this news throws me for a loop! 

 

I appreciate your encouragement so much...and wish you "good healing" as well.

 

:smitten:Leena

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Hey Leena what is up? You are very welcome.  I guess the hardest part with diet is the fact that it "takes time" to feel any noticeable difference. And we so desperately want relief from all of our sufferings that the added stress of more work to strive for seems daunting to us while we are just trying to get through withdrawals. You are BLESSED to be in Austin and I am going to tell you why. I have been doing a bit too much research on the dangers of psych meds LOL LOL and came across this lovely bit on a anti-medication psychotherapist named John Breeding and his practice is located right in Austin. I thought about going there many times just to speak with this man. He seems so in tune with real human suffering and emotions and advocates an all natural approach. It may be worth your while to check him out. He of course has a website. Just google his name. Let me know how you are making out in this struggle for normalcy. Damn tough road for all.

Your BB,

Rev Blue

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Hi Leena,

 

I hope u r doing better today. My window of last week has now closed and I'm back to the nerve pain/burning/tingling phase. But the pain is a notch lower, and I'm praying that it stays that way. I had expected the symptoms to return... I think the beauty of this site is that it prepares us for the twists and turns of recovery.

 

U mentioned that u took Levaquin last September. I too took a fluoroquinolone antibiotic (Avelox) about a year ago, and i believe that this is what precipitated the tolerance w/d syndrome in my case. I can clearly trace my misery back to that single 400mg poison pill (+Klon of course).

 

There's a recent 2008 UK study that observed that 12 out of 13 of Benzo users that took Fqs immediately developed severe adverse reactions. This is a massive 92% for Benzo users vs 1-4% for the general population. But the good news is that time also heals post Benzo/Fq symptoms. Here's the link to the paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2435654/

 

But what can help w pain? Tylenol, Advil, etc cannot impact nerve pain, cos they don't work on the CNS. Heavy duty medications, such as opiates, do that thru GABA receptors, but this is not an option of us here. I also read that Elavil/Tryptizol (Amitriptyline), a tricyclic antidepressant, could be helpful, but i personally do not intend to take any now.

 

So we r left with our inner strength and patience (and a little help from our friends on BB) to continue the fight. Stay the course, we can do it.

 

Kev

 

 

 

 

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Hey Leena,

 

    I agree with blue on the diet.  I strongly believe that a change in my diet has accelerated my healing.  Although I have always been very conscious about what I put in my body due to my breast cancer days (currently a 14 year survivor), I credit a healthy diet to my recovery to date.  I realize that it is difficult to overhaul the diet (you are right, it is not easy), but once healthy food becomes a part of your life, and the benefits the body and mind derives from healthy nutrition, you will never go back to eating those things that hinder optimal health from returning to the body.  Of course, I have a cheat day here and there, but for the most post, I am very mindful about what goes inside my body.

Make changes slowly...there are so many foods to explore.  I mean, I just started enjoying avocados.  At first I frowned upon them because I never gave them a try, but now, I eat one nearly everyday, and I find that it is a very delicious fruit.  I also get my "good" oil requirement from  avocados, and I also take an omega-3 twice daily.

 

    Leena, keep your chin up...feel better...you are in my prayers...and as always, stay the course. 

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I also changed my diet, sure has helped! I eat mostly organic, with some exceptions. Lots of veggies! I get burning in my chest and shoulder muscles. Hopefully this will heal soon! I am thinking about trying buspar!  8)
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Hello Rev...and Kev...and Retire...and Yoda,

 

It was so nice to come sit down and see the replies from all of you!

 

Rev:  I did go online and look up John Breeding.  I haven't had time yet to read about him, but just wanted to see if I could find him.  Are you in Texas?  How did you hear about him?

 

Kev:  It seems like we are kind of on the same schedule with waves and windows. Thank you so much for sending me the link to the article.  I feel so badly that I took the levaquin...I was headed out of town for a trip with my husband and I was already feeling so bad.  I was afraid I was getting a UTI and I didn't think I could handle one more thing.  So I took it.  I knew a little about the risks for "regular" people but had no idea about the problem for people on Benzos.  I took the whole round just before I found BenzoBuddies and started trying to withdraw.  THANK YOU for telling me that time can heal the antibiotic problems.  I will definitely read the article.  Sounds like this could definitely be an issue for me.  I had no idea. I wonder if doctors (neurologists) believe this, if I have to go and get help.

 

Retire and Yoda:  Thank you for encouraging me towards a better diet.  My difficulty is that I just pretty much hate vegetables.  I have a big "gag" reflex and can get really "sick" over certain things, particularly raw crunchy vegetables (I know, I know...it is like a little kid).  Certain things I eat cooked, and I make myself eat things that don't make me gag, even if I don't like them.  I don't know why I am this way...it is like my taste buds never "grew up".  But I will try...

 

You all are so good to come by to give me advice/encouragement.  Thank you, thank you!

 

~Leena :smitten:

 

 

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Hi Leena!

 

 

I have read Your thread a few days ago..since then I prepair myself to write. :)

 

I'm five months out..after a relatively problemfree taper. I got slammed by a huge wave about two months ago. I have mostly physical symptoms, one of them a swollen legs(very rear)and nerve, muscle pains.

 

I have read about you swollen knees..it is better now?

 

I visited my GP today..the subject under investigation.

 

It should get better!

 

Teri

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Hi Kevin, I took Levaquin 2 years ago  and am still having alot of nerve damage from this awful drug. Matter of fact that is why my Doctor ended up putting me on Xanax because Levaquin did damage to my Central Nervous System and my blood-pressure would spike then I would have exreme anxiety. I also have been Benzo free since November 5th, 2009 so we are pretty much at the same time also. I have had just a few windows. This withdrawal is kicking my butt. I have horrible nerve pain and muscle weakness. My balance is still way off......feels like the room is spinning. I also have horrible tremors. My anxiety level the last two days has shot right through the roof. I can't wait for this journey to be over with. I wish this didn't happen to anyone but like Leena said that she feels better knowing that this has happened to other people  for then you don't feel as crazy!!!!! Thanks everyone for listening.....I want to be more positive but these past few weeks I feel as though I am getting worse not better. We can do this!!!! Leena, just a few windows not many. I hope you don't mind me quoting what you said to me in my post about not happy this is happening to other people but at least you know it is normal for withdrawal.
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Hello All...

 

Sigh...I am SO thankful for you all.  I don't think I can say that enough.

 

Teri, it is so "interesting" to me that you have a swollen leg...though I am really sorry for you.  I am truly sorry about all your leg pain.  That continues to be one of my main symptoms.  I would love to know what your doctor thinks about your swelling.  Does he have a theory?

 

I have been sort of "paralyzed" regarding making an appt to see a doctor.  First, I don't know what kind of doctor to see...and second, I don't know if they will believe anything I have to say, whether it be about withdrawals...or about the antibiotic...or even about having had shingles in this leg a year ago.  I guess what I mean to say is...I don't know if they will believe any of these things could be causing my problems.  I finally broke down today and called the orthopedist who handled me after my accident last year.  I remember that he is very conservative about medication (wanted me off painkillers as soon as I could get off) so maybe he will believe in the side effects of benzos.  My leg (that is, the tissue totally surrounding my knee) is swollen.  Sometimes it just feels really tight.  But sometimes it also really hurts, esp. in bed.  It seems that I am mindful of the pain in my legs all night, having to shift continually to try to get comfortable.

 

Diane, it sounds like your doctor DID believe that the levaquin had caused some damage to you.  But again, I am SO sorry that his answer for you was to prescribe Xanax.  This just all gets very complicated, doesn't it? 

 

When there are multiple factors (withdrawals...fluorquinolones...shingles) it gets very difficult to sort things out.  Perhaps all of them come into play with me...I just don't know.  I get so tired of trying to figure it out.  I DO think the only answer for all 3 is probably the same:  TIME.

 

Thank you so much for your encouragement that we can beat this.  We all need to hear that, over and over and over again!

 

On a happier note, my burning pain seems to come and go a lot faster now.  Was awful last night before bed...am not feeling it right now (9:30 pm Texas time).  I can handle the muscle pain much better when I am not also experiencing the burning nerves.

 

Love you guys,

~Leena :smitten:

 

 

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Hi Leena!

 

Sorry you have to get through this pains. We just simply don't deserve it :(

 

My doc concerned about my heart, and kidneys...

 

The docs don't believe in WD, and i don't mentioning to them..if I rule out other problems I will know what is it exactly.

 

I just can't get surprised anymore..what kind of new symptoms are coming.

 

Tommorow i go for 24 hours heart monitor, plus BP..then they do all de bloodwork again.

 

Well Time is definitely the biggest healer.

 

Benzo is a nasty beast..can mimic any other disease.

 

I'm happy to hear the burning is lessened for you.

 

X.Teri

 

 

 

 

 

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