I have "Jelly" Everything!!!! Do u?

[[Ca...]]

I posted this already in the anxiety forum.  I was told to post this here..........

 

Havent read too much about people having trouble walking or lifting things.   I mean not just "jelly legs' but jelly hands, jelly ankles,

 

jelly arms, jelly back ect.  I also have INCREDIBLE anxiety.   I am trying to figure out what triggers this because it is VERY hard to hide

 

the fact, that sometimes, i cant walk without stumbling.  Anyone else have this or am i as alone as i feel?  Also what causes this? 

 

thanks for responding.  Heal well buddies Candy 

[[jr...]]

Hi Candy-I have had this sensation since my c/t, although it has improved with time.  I still have problems when taking a shower, and closing my eyes to shampoo my hair.  I have to hold onto something.  I don't seem to have any problems when I am out walking around, like in a store.  It will get better, but it just takes time.  Hugs,  Jenn

[[Ca...]]

Jenn,

Thanks.  Thank God someone understands this!  I can only lie on my bed after a shower...and if I wash my hair it's WAY worse!  Been trying to figure out why this is.  Why do u think this happens?

[[jr...]]

Dear Candy,

 

I'm not sure why it happens, although I have read somewhere that it is a side-effect of w/d.  It IS really weird.  I think it has something to do with the nerves coming alive after being suppresed by benzos, or at least that is how I look at it.  I remember in the early days of my c/t being afraid I would fall down if I tried to do anything.  I never did fall, but I always felt very wobbily.  I still do, but it's not as intense.  I spend a lot of time lying in my bed, shower or not!   It's the only place I feel truly safe-so weird.   I have read that other people on this forum have had the same problem. I hope it doesn't last too long for you.

 

Hugs,

 

Jenn

[[ti...]]

Hi Candy, just wanted to say you are not alone, I have difficulty walking too and have had for about a year while I was in tolerance w/d and now following d/c.  I stumble too.  I feel like the muscles of my legs are frozen almost.  It is very embarrasing.  Also have terrible problems in shower...have to hold on to something.  Take care, Kathy. 

[[Ca...]]

I was in tolerance w/d for 2 yrs.  I was having problems walking.  Had MRI of my brain and spine to r/o MS ect.  NO DOCTOR suggested

 

it could b the xanax.  In fact they said "no, it cant b that"  Came to bb and found out my REAL problem...interdose w/d.  So now Ive

 

been withdrawing for 3 yrs now.  MAN am I pissed that I was poisoned!  I feel like i weigh 1000 lbs, & my sheet that i have in bed feels

 

like it weighs 100 lbs.  Heck, my arms weigh 200 lbs each and my legs feel like they weigh 300 lbs each.  I have fallen 3 times. 

 

SOOOOO scary....also embarassing, especially at the store when I start that "leg jerking walk"...anyone get this?  Candy

[[ti...]]

Candy I am terrified I have MS or some awful degenerative disease but heres a story that might interest you:

 

Years ago before I started taking xanax for anxiety, I went to the emergency room with pneumonia.  They said they might have to hospitalize me and I got very panicky so they gave me a shot of xanax.  Well they didn't hospitalize me and I got over the pneumonia pretty quickly but my legs became stiff and I could not walk right for about a week...they sent me for tests...NOTHING.  Nobody ever mentioned that it could have been the xanax. 

 

Well fast forward a couple of years later I started taking xanax daily for about a year.  I decided maybe I should get off it...stopped cold turkey..OMG my legs!  I could barely walk.  I reinstated.  I had completely forgotton about that hospital episode until recently.  Well anyway, after five years of xanax my legs got so bad I said to myself "I can't get any worse" and made the jump.  Unfortunately, still have the stiff and shaking legs.  Hoping it will get better though!  Take care, Kathy

[[su...]]

Hello Candy,

 

I saw your questions and put some information together that may be helpful. I wanted you to know that the symptoms you're having are well documented. I have three references for you. I am the type of person who seeks to know what is happening and why, it brings comfort to me. I hope it does the same for you.

 

“Benzo-Wise, A Recovery Companion” by Bliss Johns, 2010

 

Symptoms from A to Z

 

Weakness: feel drained of energy, almost unable to move or even sit up

 

Muscle twitches/Jerks/Spasms: involuntary movements – myoclonic jerks, tics, twitches and spasms in different areas of body including extremities

 

Muscle/Joint pain: joints feel arthritic and muscles stiff and hurting, muscles feel as if performed rigorous exercise

 

Muscle rigidity: muscles all over feel extremely stiff, inability to move agilely

 

 

“The Accidental Addict” by Di Porritt & Di Russell, 2006

 

Muscle and Joints

 

“Severe muscle and joint pain, spasm, tension and weakness are all very common. Muscle pain is often a general dull ache but at other times it can be particularly severe, especially in the neck and shoulders. Wrists, elbows, knees, and ankles can also be very painful.

 

Muscle spasm and tension

 

“People often wake up in the morning with cramps in their legs or tight knots in their necks and shoulders.”

 

Muscle weakness

 

“Weak muscles can make the simplest tasks difficult in the early stages of withdrawal. Just to get up out of a chair or hold your head up is too much at times. Any activity which involves raising the arms above the head is completely exhausting.”

 

 

 

"The Ashton Manual" by Heather Ashton, 2002

 

BENZODIAZEPINE WITHDRAWAL SYMPTOMS:

 

INDIVIDUAL SYMPTOMS, THEIR CAUSES AND HOW TO DEAL WITH THEM

 

Muscle symptoms. “Benzodiazepines are efficient muscle relaxants and are used clinically for spastic conditions…..It is therefore not surprising that their discontinuation after long – term use is associated with a rebound increase in muscle tension. This rebound accounts for many of the symptoms observed in benzodiazepine withdrawal. Muscle stiffness affecting the limbs, back, neck and jaw are commonly reported, and the constant muscle tension probably accounts for the muscle pains with have a similar distribution. Headaches are usually of the “tension headache” type, due to contraction of muscles at the back of the neck, scalp and forehead – often described as a “tight band around the head”.

 

“At the same time, the nerves to the muscles are hyper excitable, leading to tremor, tics, jerks, spasm and twitching, and jumping at the smallest stimulus. All this constant activity contributes to a feeling of fatigue and weakness (“jelly-legs”).” Jelly legs: legs feel weak and rubbery as if about to give way. In addition, the muscles, especially the small muscles of the eye, are not well co-ordinated, which may lead to blurred or double vision or even eyelid spasms (blepharospasm).”

 

“None of these symptoms is harmful, and they need not be a cause of worry once they are understood. The muscle pain and stiffness is actually little different from what is regarded as normal after an unaccustomed bout of exercise, and would be positively expected, even by a well-trained athlete, after running a marathon.”

 

 

“There are many measures that will alleviate these symptoms, such as muscle stretching exercises as taught in most gyms, moderate exercise, hot baths, massage and general relaxation exercises. Such measures may give only temporary relief at first, but if practiced regularly can speed the recovery of normal muscle tone – which will eventually occur spontaneously.”

 

I hope this is helpful,

Summer

 

 

[[su...]]

Jenn,

Thanks.  Thank God someone understands this!  I can only lie on my bed after a shower...and if I wash my hair it's WAY worse!  Been trying to figure out why this is.  Why do u think this happens?

 

Hello Candy,

 

I saw your question regarding, "Why do you think this happens?". I put together some information that may be helpful.

 

 

 

Why Benzos are difficult to get off of compared to other drugs?

 

“The Benzo Book, Getting Safely off Tranquilizers” by Jack Hobson- Dupont, 2006

 

 

“It is the down-regulation of the neural receptors that differentiates benzodiazepine dependency from that of all other substances. That is the explanation of why getting off these drugs can be so horrendously difficult for some people, and why withdrawal symptoms for some can last days, weeks, months, even years after the last dose of benzodiazepine is taken. It is ignorance of this aspect of benzodiazepine discontinuation that leads medical professionals-- even addiction specialists who should know better-- to misunderstand the plight of benzodiazepine users. All of their exceptional difficulties and often bizarre discontinuation phenomena are a result of the single problem of down- regulation of the neural receptors after exposure to benzodiazepine.”

 

 

What is the deal about the GABA receptors that makes it so hard for me to taper faster?

 

“The Benzo Book, Getting Safely off Tranquilizers” by Jack Hobson- Dupont, 2006

 

 

“Those who are in the throes of benzodiazepine dependency would do well to absorb that idea: the sole problem you are having is that benzodiazepine has interfered with one of your body’s most elemental functions, that of attracting GABA to its neural receptors. The results of this condition may well present as a staggering array of withdrawal phenomena, everything from insomnia and anxiety, which would seem understandable, to dental distress, difficulty breathing, sinus problems, twitching muscles…..the list is seemingly interminable and contains phenomena that would appear to have nothing to do with the nervous system. Subjectively, these phenomena feel like illness. What is happening to someone whose many trillion nerve cells are down- regulated because of benzodiazepine is neither disease nor tissue damage, but more like a mechanical malfunction. Therefore, recovery is more akin to ‘repair’ than ‘healing’. Being aware of the actual nature of what is wrong helps demystify the rather bewildering process of getting on with recovery.”

 

 

How does GABA affect the body?

 

“The Benzo Book, Getting Safely off Tranquilizers” by Jack Hobson- Dupont, 2006

 

 

“What GABA does is to bind to parts of the neural receptor. It is this action that calms the nerves. Benzodiazepine binds to a different place on the neural receptor than where GABA binds, but its presence there strengthens the bond that the GABA makes, which increases the power of GABA to inhibit stimulation.”

 

What is down- regulation of GABA?

“The Benzo Book, Getting Safely off Tranquilizers” by Jack Hobson- Dupont, 2006

 

 

“Professor C. Heather Ashton found in her extensive research was that, in some people, after exposure to benzodiazepines, the ability of the neural receptors to attract GABA is reduced. So, even after there is no longer any benzodiazepine in the body to influence the receptors directly, they still aren’t able to bind enough GABA to themselves to inhibit electrical excitation sufficiently. This phenomenon is called “down regulation” of the GABA receptor sites.”

 

 

Why down- regulation of GABA causes a vast array of withdrawal symptoms?

 

“The Benzo Book, Getting Safely off Tranquilizers” by Jack Hobson- Dupont, 2006

 

 

“Dr. Lance P. Longo and Dr. Brian Johnson of the American Academy of Family Physicians, wrote in “Benzodiazepines- Side Effects, Abuse Risk and Alternatives”, that:

 

“With long-term high-dose use of benzodiazepine there is an apparent decrease in the efficacy of GABA receptors, presumably a mechanism of tolerance. When high-dose benzodiazepines are abruptly discontinued, this ‘down-regulated’ state of inhibitory transmission is unmasked, leading to characteristic withdrawal symptoms such as anxiety, insomnia, autonomic hyperactivity and, possibly seizures.”

 

“What Professor Ashton determined was that even when benzodiazepine isn’t ‘abruptly terminated’ as described above, it still has the potential of down-regulating the action of the neural receptors to inhibit excitatory states. While this is a simple, uncomplicated difficulty, the function of GABA throughout the body is so widespread, so fundamental to the operation of a wide variety of bodily systems, that to have it impaired produces an opportunity for a vast array of possible problems to appear.”

 

 

Why do benzos have to be out of the system to feel better?

“The Ashton Manual” by Heather Ashton, 2002

Mechanisms of withdrawal reactions. “Nearly all the excitatory mechanisms in the nervous system go into overdrive and, until new adaptations to the drug – free state develop, the brain and peripheral nervous system are in a hyper-excitable state, and extremely vulnerable to stress.”

 

I hope this is helpful,

 

Summer

 

[[Ca...]]

Summer,

I have no words BUT thank you! Thank you! Thank you!  I have been researching this for years and havent found the answers you

 

provided me!  Yes, I do feel MUCH better knowing all this.  I did see MANY specialists.  ALL said I was a very healthy gal......I wud cry

 

in their office because I was slowly dying and no one knew why. (2 yrs of tests which I finally diagnosed myself as interdose w/d, then

 

tapered myself)  I havent been able to walk for three yrs now!  Thank you so much for taking the time and effort to write that up for

 

me!  If u were here, I'd hug and kiss u! Bet you're glad u r not here lol!  Candy

[[Bi...]]

Hope I can jump in here and say what an informational post, well presented.  Thank you Summer

[[...]]

Thanks guys! I just had a horrendous day of staggering and dizziness, my ear is ringing like a bell, I was looking up ENTs, then decided to come on the forum and after reading know it is probably the withdrawal. Oh, as an added treat I had my whole left side seive up in pain, my stomach began to tighten so bad I doubled over and felt like I was going blind! Just another day at work! So you are not alone, this is standard stuff for me.

[[su...]]

Summer,

I have no words BUT thank you! Thank you! Thank you!  I have been researching this for years and havent found the answers you

 

provided me!  Yes, I do feel MUCH better knowing all this.  I did see MANY specialists.  ALL said I was a very healthy gal......I wud cry

 

in their office because I was slowly dying and no one knew why. (2 yrs of tests which I finally diagnosed myself as interdose w/d, then

 

tapered myself)  I havent been able to walk for three yrs now!  Thank you so much for taking the time and effort to write that up for

 

me!  If u were here, I'd hug and kiss u! Bet you're glad u r not here lol!  Candy

 

Hello Candy,

 

You're welcome. I'm so happy to hear the information was helpful. Thank you for the kisses and hugs.

 

Hugs and kisses to you,

 

Summer 

[[su...]]

Hope I can jump in here and say what an informational post, well presented.  Thank you Summer

 

Hello Bilbo Baggins,

 

You're welcome. I'm so happy to hear the information was helpful to you.

 

I wish you only the best,

 

Summer

[[ta...]]

Oh Candy!  Boy do I feel for you.

 

I haven't posted here for eons (but keep checking in).  Today I felt like I'd had it and came here to see if what was going on was normal.  The 'jelly everything' is exactly it!  I stood on the sidewalk this morning - it's beautiful sunshine and we're two blocks away from the lake - I haven't been able to walk that two blocks for a few years.  Just looked down the street and felt some big self-pity that I've been trying so hard to avoid.  I KNOW what you're feeling.  Somehow we need to remain optimistic and hopeful and work on appreciating every single positive thing we come across (just the taste of something delicious!).  Hmmm, am I preaching here to you or myself??  THIS WILL PASS and we will be so much better for it.  It sure is bizzare though, can hardly remember what it feels like not to be jellylike    Can people really go for pleasant walks through a park?  No matter what my determination this morning - just to walk to the end of the block, I literally couldn't do it - not just anxiety (which is there) but literal inability - and that is so hard to wrap the head around with this benzo stuff, that it can really be this bad.  My husband is starting the 'it has to be psychological' talk ... oy vay!

 

Summer, thanks to you for the time you took posting the information.  It gave me greater resolve and affirmation once again.

 

Thanks to everyone here!  Candy, I am thinking of you right now and will continue to send you positive thoughts throughout the day. 

 

Lots of Love,

 

Ellen

 

p.s.  yesterday I stumbled on a site called nightlyhealing.com.  I've been trying not to obsess over 'healing' and just trust it, but when the internet surfing starts, who knows what you end up at.  Anyway, it links you to one of those conference calls live every night at 9:00 p.m. (Eastern) and has a live meditation on healing.  I tried it last night (felt a little odd) but it was really amazing.  Just a peaceful meditation - and there was something very cool about it being 'live' with all kinds of people listening all over the world at the same moment.  I found it really powerful and am going to try it again tonight.  Anyway just FYI, never know what can help us emotionally.  There was a long distance number, then a link to local numbers around the world (piles of smaller towns as well), I got one here in Toronto that was free (although long distance rates aren't so bad anymore).

 

Okay, I am SO rambling.  This was one of my rare coffee days and boy can I feel it!