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Hi. Need Help. On 2 Benzos. Complex physical issues. Drug hx incl. Baclofen etc.


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Hello. As outlined in Intro, my situation is complex. Searched so many threads and not many folks have physical issues pre-benzo or due to benzo, or do not post often due to pain [can't blame them].

 

In UK:

Currently on 1.375mg Clonazepam and 8mg Valium as of 2 days ago. Was 1.5 Clz and 5V since mid-Oct when first swapped, but recent worsening biomechanical issues forced me to swap again some Clz out for V. Clz causes too much hip/leg tension. V seems to help slightly but only dose at night, makes me feel sick + drugged during day. Never able to split Clz dose either.

 

GP is on board but leaving in Jan. Wants me to take Lyrica - but afraid to - ie, Floxxed in 2009, ADs cause glaucoma. Adverse sx from Mg. CBD oil seems to block benzo.

 

In Canada:

This all started July 2016 w/Baclofen for spasms, pulled muscles, in back and L hip/leg.  Then, forced to c/t by GP after 2 months, told to replace w/Mg. Lasted 2 days then reinstated and tried to taper twice over a couple weeks. Nightmare ensued. W/D horrible, seized up body, caused rotated hip in R leg [due to bearing all the weight of limping Left leg].

 

GP said all in my head, dx Fibro. Also had multiple tendonitis in joints and tears.

 

Then UIT macrobid, went to ER after trying Mg again, thought was kidneys. ER gave me Ativan tho they knew i was doing the Baclofen taper. Alas 1st benzo. 

 

Then GP gave me Zopiclone to help taper Baclofen. But paradoxical - shivering, scratching, etc. Tried every few nights but gave up after 2wks. Suddenly dependent on Ativan during these wks to sleep. Tried Naturopath but took all the herbs now know to avoid - gave up after 2 wks obvs. didn't work.

 

Finally mid-Oct 2016 -- Clz .75mcg -- b/c had to move overseas in 1 month. Instant joint pain, and seemed to lock hip rotation. Severe atrophy all over by this time but could walk a bit. Needed w/chair for airport tho.

 

In UK:

2017 seemed stable and made 'some' progress w/fitness - could walk 20 min, grocery shop, but not lift bags. Slept well, never felt anxious to take dose [night only], no rescues, nothing. Rheum. said stay on for 1 more year until more fit. Started Vit D as was too low. Not sure that induced tolerance? Lots of chamomile tea too.

 

Then, last Dec, anxiety and hip/leg muscle tension, then nerve pain in foot, started limping, then Achilles pain, which is the root of this now.

 

Tried orthotics, leg pain worse. Then wore outdoor shoes day/night for 7 months on Podiatrists orders, instead of flat slippers as had been habit for many yrs. Seems muscles shortened. Can't stand in shower more than 1-2x per/wk.

 

In July, anxiety thru roof, can't sleep for a week. Needed rescue doses. New GP said 'tolerance w/d'. Updosed me to 1mg. After 1 week, direct switch to 10mg V [too low]. Didn't sleep for 4 nights, back to 1mg Clz. Lots of w/d sx from switch. Lasted 2 weeks, then more tension. Upped to 1.5 C. Lasted 2 wks, then more tension.

 

GP didn't believe it was Clz, said it was Fibro. Wanted to up to 2mg, i said no.

 

Got fed up. Started my own Ashton taper when GP did not return calls. Used 1.5C as starting point. He was supportive, tho against the concept. Lasted 25 days, got to Stage 3 c/o of .75mcg C and 18 V [GP did big V updose to start]. Overall dose ~ 1.65C.

 

Then GP said 'Stop' - Rheum says V bad for Fibro/ME + other issues [hypermobility, hip, etc].

 

So back to 1.5 C, no V at all. Lasted 3 weeks using ibuprofen [didn't know better], then sudden w/d sx set in - joint pain, etc. Upped to 1.65C, ie, last dose during Ashton. Then new Psych said go up to 4mg C, I said no. But went up to 1.75 for 1 night, but more tension/pain. Next night asked GP to swap out 0.25 Clz for 5V. Gave some relief in morning to try to stretch legs.

 

In Oct - tried to cut V to 4.5, felt weak, wobbly. Then 2 days later cut 5% overall, and cut out all V. But lasted only 1 night. Cut too much out of desperation.

 

So now forced to wear old flat slippers again due to feet swelling started after Ashton stopped - can't wear any shoes. Ankles, knees very swollen too. Lots of other sx.

 

This is plenty confusing. And overwhelming - so sorry.

 

Just Hoping for any insight, advice. Feel trapped, want off. Desperate, can barely walk or stand 10 min every hour during day, housebound since mid-July. Sleep in fixed position on back w/pillow under knees since July. Knees frozen [knee probs prior but never this bad].

 

GP supportive but clueless, and moving on. Psych said tension not caused by Clz -- he discharged me [after that 1 appt. as above].

 

Hate being on 2 benzos but helpless/hopeless due to physical issues. Also know they can be working against each other. Can't get to Pain clinic, anyway they want me on Lyrica. Tried Osteopath, made things worse.

 

Too much chopping/changing, cuts, switches, updoses, tolerance, maybe kindling. Terrified. Hubby supportive but at wits end.

 

Sorry so very long and complex. No easy solutions, I realize.

 

Very grateful for any help, ideas, anything at all.

Hope I can return in due course. Many thanks for your patience and reading my desperate ramble.

 

 

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Welcome to BenzoBuddies!  We are glad you decided to join us.  You'll find a lot of support and information on this forum, which is the only one of its kind online.  Your first post is very long and complex, so this is just a general welcome.  Also, it's a good idea to create a signature with pertinent info, like the one at the end of my post:

 

CREATING A SIGNATURE

 

To do this, Click on 'Profile' then 'Account Settings', Then 'Modify Profile', in the drop-down list click 'Forum Profile'. From that page, scroll down almost to the bottom and type in your info in the Signature box. Make sure and click 'Change Profile' at the bottom. And that's it!

 

 

For those starting a taper, we generally recommend starting out at a rate of 5 to 10% every 10-14 days, then adjusting the taper to suit your own needs.  Note: very short term users may be able to taper faster.

 

Withdrawal symptoms, which vary widely but commonly include anxiety and insomnia, often occur during a taper, but these are temporary and will get better in time.  In general, first tapers are easier, but cold turkeys or multiple withdrawals may be more severe and longer lasting.  Here are a few links to get you started:

 

The Ashton Manual, a concise reference for tapering and symptom issues.

 

Withdrawal Support (during your taper)

 

Once again, welcome!

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Thank you. I just wrote a reply but it got deleted when i tried to post.  :-\

 

How do i make a sig w/such a messed up hx?  :-[

 

Made more changes in past month and left that out b/c so confusing, up/down, failed swaps, etc. 

 

my heart goes out to others in same boat ..... GP errors, even if intentions were meant to help. but instead caused severe harm.

 

been reading posts for 6 mths now so quite familiar w/BB threads etc.

 

just looking for an outlet for sorrow.

have many external stressors. would not be here if not for hubby. his mum is very ill and he tries to care for us both and work from home. i can't function on my own. and we have no support.

 

also i have past family trauma which worries me i will not heal. worried can't survive taper whenever it is that i can actually start it.

 

wish i had a time machine and tapered when at .75mcg and semi-functional. don't we all....

 

sorry for long pitiful ramble again. so very depressed. thanks for listening.

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Chipmunk, I can see why creating a signature would be tough! Obviously your body hates medications..  that is very clear.  I was surprised to hear that Clonezapam gave you tight muscles as it is a muscle relaxant but can totally relate to the locked hip and your pain. But you did it! You are here now and are tapering to get better.  Although it may take a good year, you are recovering and by eating well and resting with acceptance- I know you will feel better! I too had ruptured Achilles’ tendons on Benzos.  Never knew to was related until I found BB. Awful that this is what happens from a drug that is supposed to help but instead damages.  :tickedoff:
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thank you so much Leslie for the kind and helpful reply

 

good grief, that's horrible about your Achilles - both actually ruptured?

 

was it b/c of tension in your legs? during taper?

 

could you walk at all?  how did you cope?

 

oh my gosh i hope they healed OK?

 

i'm terrified mine will rupture. but don't know what the damage is as can't get out to do any scans, can't travel at all, couldn't cope. 

 

Re Clz - yes, that's what me and my Docs don't get - why more tense w/updoses?

maybe paradoxical?

 

otherwise, i'd go up to 2mg if i thought it would relieve tension.

 

maybe just tolerance, no different than return of anxiety, insomnia?

 

also seem to become tolerant to V relaxer as well. Psych said cross tolerance, to put me off taking it.  tho he doesn't believe tension is caused by Clz.

 

so very confusing. Docs all say it's Fibro. but it only started w/updoses....

 

when i took first rescue dose when still at .75mcg, for lack of sleep due to heel pain -- but not insomnia -- well i got awful rebound spasms in my legs hours later.

 

so yes you're right, my body hates meds, esp. benzos.

 

my Canadian Rheum Rx'd medical cannabis 2 yrs ago at the time this all started. but i didn't fill it b/c we were moving to UK in 1 month and not legal here. so never tried it.

 

he said to avoid these meds too, b/c he gave me cortisone shots for tendonitis in R shoulder and R hip [bursitis] during that time 2 yrs ago w/all the benzo mess, and my shoulder flared up all red and swollen for weeks. 

 

how i wish i was tapering but instead have kept going up with V due to this tension prob. it's worse every day now since the last swap 4 days ago. altho the swap means less Clz, it's still higher dose overall ~ 1.775C.

 

don't know if Clz is more potent muscle relaxer than V? 

 

afraid to go back to all Clz in case it makes it worse. but it would simplify things.

 

inability to accept -- esp. now want to spend time will hubby's ill mum but can't.

 

... thank you so much for taking time to provide supportive reply.

 

hope you are healing.

 

 

 

 

 

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Hi again,

 

You don't have to put everything into your signature, just the most salient things which are most important to you.

 

Signatures help others to see and remember your major issues. Its also very helpful for you because you won't have to rewrite your history in every post. Most members are suffering and going through their own difficulties, and they probably won't go back and read your old posts. 

 

You can add to, subtract from, upfate or rewrite your signature as often as you like. 

 

:smitten:

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A lot of questions! I will do the best I can. Just my right Achilles actually ruptured but both were very strained and painful... so I was AT physical therapy when the right one went. Again, they knew I was on K but no one attributed it to that.  I got PRP surgery and healed with a lot of time off. My point is that traditional methods of healing the Achilles may make it worse until you get off Benzos! And yes, CLZ is definitely more of a muscle relaxant ( much stronger too) than V. But since you had paridoixal affects then going back on won’t help and is the worst thing you could do for your health.  Keep tapering properly and stay the course! You will get THROUGH this.. not around or under.  Thanks for caring!
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thank you Leslie for your info, and so sorry for all the questions, and all you had to suffer. how very painful it must have been and very scary.

so very glad you healed and can now walk.

 

were you Floxxed?  Or do you think it was just the K?

 

yes -- afraid of Pain Clinic -- took 5 months to get appt. -- but was already too late for my body...... the Physios there will try to manipulate, stretch, etc -- like you, my body can't handle it in this state. 

 

That's why i tried an Osteopath who did home visits, but as gentle as she was, still seemed to make things worse.

 

i'm afraid i may be paradoxical to both C + V.  Psych said i was cross tolerant.

 

together they make me so weak as well and the combined sx may be worse than on just 1 benzo?

 

my legs are so weak and atrophied, and ankles and knees so swollen and stiff, seems they are all that is able to hold me up.

 

also as my GP is leaving -- a new GP may force me back to all Clz.  they don't agree w/2 benzos... i will find out today/this week.

 

am sure they will say swapping benzos is not tapering... tbh, just winging it.

 

i don't want to be on 2 benzos, just got desperate. 

 

i agree -- i hate the idea of adding Clz back in again for like the 4th time, but i may not have a choice.... dreading this...

 

thank you for taking the time to offer support and advice. wishing you all the best.

 

 

thank you again megan

 

yes sig makes sense as you describe.  i will try to edit complex hx and make sig somehow. 

 

just makes me so anxious trying to compose anything coherent.

 

read your bio and sorry for all your suffering, so glad you are healing.

 

 

many thanks to you both  :smitten:

 

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Hi LeslieJ

 

Many thanks again for your helpful replies, and sharing your similar sx in support :smitten:

 

So sorry to ask again - will be brief - would be so grateful for just a few details please? 

 

1. Did your Achilles become strained due to tension in entire leg? Or just heel pain developed without leg / hip tension? ie, from Clz?

 

2. You mentioned it happened while you were on Clz - were you in tolerance at that point? Did you feel tension from Clz?

 

3. You mentioned locked hip / pain - is this post-rapid-taper? Not while on Clz?

 

4. Were you ever Floxxed, ie, antibiotic like Cipro?  ie, it causes Achilles rupture.

 

 

So sorry you suffered/are suffering all this pain too - I very much hope you can walk OK now?

 

Wishing you more healing each + every day.

 

Thank you so much in advance for your time and support, am terrified of this situation  :-[

:hug:

chipmunk

 

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Hi,

 

I am having a nightmare with muscle contractures, spasm all along spine, neck, shoulders face, buttocks, jaw.

 

 

 

ME/CFS diagnosis since 1996. Out on amitriptyline and Zopiclone.

Slipped disc 1998 - ended up with whole right side in spasm for over a year.

Had surgery for disc and to remove a piece of disc from spinal canal. By that time legs had lost tone and pain was so bad I wanted to die. Drs wouldn’t listen. Put on diazepam and methocarbamol.

 

3 or so years ago was diagnosed with hypermobility which may have caused it all.

 

Also might have Lyme as had bite and rash back in 87 but Dr didn’t recognise rash so nothing got done. Going to get a test as soon as feel able to cope with it.

 

Been pretty much house bound for 22 years. Had problems sitting, supporting head upright since 96.

 

Tightness in right side and left shoulder plus jaw and neck never went away fully despite physio, doing exercises (mostly floor based), loads of other body work.

 

Have degeration in parts of spine and two vertebrae have fused at top of thoracic spine.

 

In WD all of this has got much, much worse. No position is remotely comfortable.

 

Ended up being diagnosed with dystonia in middle of back, abdomen and neck but think it is actually severe muscle imbalancefrom right sided contracture along whole spine.

 

Had to reinstate. Retapering.

 

Also have horrible sensory (all senses are altered) and perceptual symptoms and terror of everything since WD.

 

So, you ate not alone!

 

 

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Thanks Stodgers

 

Yes, Cipro in 2009. thank you for asking. took ibuprofen at the time, nothing else.

 

v. worried about it and long term consequences, esp. Achilles -- and i've had torn tendons in L shoulder twice, have calcific tendonitis in R shoulder + big chunk which tore L hip/G trochanter.

 

also took macrobid during 2016 [during benzo/Baclofen hell], that seemed to make things worse at the time as well.

 

 

have you had issues as well?

 

hope you are healing. many thanks again.

 

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Dear Ajusta

 

thanks so very much for your support + reading my story + sharing your story of horrible suffering.  :(

 

oh my goodness, so very sorry to hear it.  my heart goes out to you, you've been through so much. you have an enormous amount of courage and endurance, good grief, you give me hope  :smitten:

 

i have more / similar to share in solidarity, will write back asap.

 

sending much healing and hope to you for better days to come. you are not alone either. we will find a way.  :hug:

 

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  • 3 months later...

Ohmy.  So sorry for your pain chipmunk...for everyone's.  I'm sharing some of those sxs w/you & LeslieJ, too.  R. ankle's been quite painful since last August '18.  Don't recall injuring it.  As tapers continued, pain just worsened.  At one point, I'd thought achilles tendon, then I'd thought, perhaps, gout, as I feel almost a "crunchy" sensation (crystals?) outside r. side @ knobby part of bone where ankle joins foot.  Then, pretty much attributed to neuropathy.  By now, both ankles swollen.  (HBP?) I ice most evenings & began taking a diuretic 2 weeks ago; no difference.  Been housebound, too.  Days usually a combination bed or on computer.  In pain 24/7. Eyes have begun aching, stinging, itchy Jan. '19.  I've just been following "anything new is most likely w/d sxs".  No, can't stand much. Jelly legs.  I'm finally at a point where I do kind of want to see a physician - only to get r. ankle x-rayed, blood pressure check & blood tests; that's all, so will go to a medical walk-in.  (Live in U.S.)  Having to get over general mistrust/fear of doctors now - & It sounds so ridiculous but I have to summon the courage, strength & fortitude to get in the shower!  "Steady as we go" ...what choice(?)  :(

 

I think I saw something on a post here re: Cipro.  Just learned within last couple of days that Cipro, as well as Flagyl (another antibiotic) used to treat c. difficile colitis, which I've had twice...different from colitis; it's an infection of the colon - very bad - Flagyl's only antiobiotic which treats; it can be caused by too many antibiotics - does the medical world have any idea what they're doing??! >:(  - either of them, as well as ativan (& I imagine all benzo's) can cause peripheral neuropathy.  Yet physicians just continue to deny, deny, deny - They're blameless.  This community proves otherwise.

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dear CuzKK

 

not sure if you got my PM -- after your post here...?  so copied it below -- just in case you thought i missed your kind reply  :hug:

 

hope you can get your ankles checked out soon... glad you can ice them... that's some treatment, at least.

 

i hear you RE Docs... 7 various Docs disabled me past 3 yrs  >:( 

 

SO MUCH ANGER.

 

.....SORRY for further delay to your post.... so just a quick update:

 

cut too much nasty K last week + had to add back some.... OMG even more painful... !?  IDK why ?! 

 

+ then, OMG -- shock, horror..... head / neck + ankles / feet jerking violently side to side... TERRIFYING.... NEVER had that before !?  :'(

 

HATE K.... = ALL PAIN...+ neuro disorders now.... ?!

 

should've just taken some V instead... IDK... so messed up + so much anger  :-[

 

 

due to bad back + frozen knees -- i can't reach my feet /ankles ... so really worried about damage being done / untreated.

 

also, those 'frozen knees'... trying mild heat for just a few mins.... but different parts of knee feel like different probs....  IDK, they're like huge swollen grapefruits that feel like cement.  ankles similar.... just smaller versions.

 

GP said water pill won't help swelling.... guess she knows it's the benzos / lyrica lingering...

 

sorry diuretic not working for you  :(

 

GP suggests compression stockings.... but hate the thought of horrible, hot, tight nylons .... my feet burn + chafe.... + hard enough for spouse to help me w/socks...

 

sorry to ramble... BELOW was my PM to you

 

 

just a quick note to say....  :smitten:

 

....thank you so v much for your incredibly kind, thoughtful + encouraging reply to my Intro... not sure how you found me... but so glad you did.

 

+ so v happy that you're finally off this poison!!  how i envy all who are off, tho sad the suffering continues for many, while healing.

 

want to reply properly to many points in your post, sorry for delay.... in meantime:

 

.. i've been trying to catch up w/your Hx.... as well as the sxs, ABs, Fibro, etc ... we have much in common.

 

i'm so sorry you're in pain 24/7 too + share similarly awful sxs, so disabling  :(

 

i do hope + expect, that healing is underway + soon you'll be more mobile + healthy.

 

well, since my INtro ... severe downward spiral.... w/forced + failed lyrica trial early Jan -- which tripled both ankles swelling + caused DVT + still have these sxs... along w/odd colitis-type stuff too.

 

then a 2nd Ashton attempt about 5 wks ago - this time ironically forced + failed miserably... now tolerant to both V + K...  should've been allowed to do it back in SEP....

 

so now very destabilized + even more disabled, trying to apply for disability.

 

sending  :hug:  + hope -- you'll get thru this...  i've got miles to go... so thank you for reaching out x

 

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My apologies, CM.  I did receive your PM.  Unusually, I'd received several PMs around same time.  I think I missed replying to some; not intentionally no response...Even when I'm @ worst, will send a quick note to acknowledge receipt.  Sorry, have been in quite a pain-fog last several days.  Have been online doing alternative therapies/research, so am tired now (it's overwhelming!  ???:sick:), but wanted you to know that lack of response wasn't deliberate.  :smitten:  CuzKK - Will see if I can use "quote" to send this reply via PM, too, or a "cut & paste"; don't know if that's possible w/Technical/IT.
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no worries at all dear Cuz... :hug: 

 

no need to send as PM as well... this happens to me too, i tried to reply to a PM but sent it to myself.... ???

 

oh the pain is unrelenting -- v sorry you're in the thick of it too... just no respite here while still on these poisons + in tolerance.

 

but hope you get a window soon + healing continues -- so v lucky.

 

owe so many helpful buddies a reply to forum posts .... just get way behind w/disabling SXS....  :-[

 

+ sorry if my post was full of rage + panic...  was in no way aimed anywhere but at all the Docs + myself for believing them  :(

 

can't even sit to watch TV or read a book, so distraction is hopeless.

 

hope you find some helpful remedies / therapies soon x

 

 

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  • 1 month later...

Hi There Chipmunk and friends:  sidebar: (a note about prolotherapy for muscle and ligament tears)

 

I knew you and I had things in common but I just realized that you took fluoroquinolone drugs,  it looks like three times.  Oh my Gosh.  If there

is any doubt that your severe complications have been instigated by the ingestion of these drugs with a benzo, I am one who would say not maybe, definitely!!'

 

I am so sorry.  I now know my spinal meningitis-like symptoms 7 years ago and the severe symptoms were caused by Amoxicillin/benzo, not even a fluro.  Then

5 years later, two heart attacks while I was taking Rifampin, and doxycycline.  Those drugs aren't even on the watch list but they should be.  No doubt they

are what caused my heart attack and then afib and myocarditis. 

 

But, Chipmunk, I did get gradually better after each episode.  My healing stopped at a given point though because I was in tolerance withdrawal and didn't realize

that the benzo was the source of all my hell.  I am sure you get that!! 

 

I just wanted to tell you that I have just 4 days ago jumped off my C.  I kind of rolled off really because I was taking such a low dose for the last month.  I actually

had the best 2 days in 8 months two days before I jumped.  So, some good news.

 

I did want to mention something that may help you if you have access.  It is called prolotherpy.  This is a D.O. specialty these days.  It is an injection at the

torn ligament or meniscus site of damage using saline or sugar to invoke an infection, thus causing your blood to rush and heal the injection site.  Rafael Nadal

was badly injured before he played Federer in the Open and went on to win (lol, not trying to rub that in)  Other major athletes have used this to heal torn ligaments.  There is hopel

 

Hoping to hear some good news from your side of the world.  Love and hugs

 

Klonkar

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