Buddies, I need your help now more than ever.....

[[le...]]

Hello Buddies,

 

I apologize for what is going to be a much too lengthy post.  But I would so deeply appreciate your thoughts/advice about what is happening with me right now.

 

First of all, I am coming upon 18 months off of klonopin, and am still struggling.  My problem is that I do not know what to attribute to withdrawal and what to attribute to (something else).  I have had a pretty rough time for about 17 years with chronic pain issues, a lot of which I now can pretty confidently say were tolerance withdrawal from klonopin, which I was on for a total of 17 years  (so that would be 15 years of tolerance withdrawal pain, and just under 2 years of actual withdrawal pain.  I have had enough of my pain issues resolve that I have been holding out hope that all or most of my remaining nerve/muscle pain is withdrawal and I just need to keep waiting it out.

 

[i need to add that about a year ago, after I had been about 4 months off klonopin, my left knee suddenly became very swollen (something that had never happened before).  I was feeling SO bad back then, had some blood tests that indicated I had inflammation going on in my body, and the fluid taken from my knee was at least part of that inflammation.  A rheumatologist diagnosed me with psoriatic arthritis (he saw the psoriasis on my hands and did an MRI, where there was inflammation found in my spine).  Because I had never had this problem before withdrawal, I chose to wait it out...to see if it would go away with time.  The treatment for this condition is immunosuppresant therapy, since this is a autoimmune condition.]

 

Fast forward to this past week, when I went in for acupuncture (last Wednesday).  The acupuncturist also prescribed me some supplements, as well as 2 Chinese herbal blends. Shortly after I took one of the supplements (maybe a day later?) I started having some intestinal issues (lots of burping, bloating..) and since this particular supplement was to help the liver detox (he told me it would be slow) I got worried that maybe I had toxins floating around in my bloodstream and so I went to the health food store and bought a fiber blend that was supposed to help remove the toxins (if I sound ignorant at this point, it is because I am).  I used that one time, as well as some new protein powder that is made from raw food.  Things got even worse, not only intestinally but with very intense pain, as well.  (I do not know if the supplements/fiber/protein had anything to do with this...it could all be coincidental, but I needed to include it in the story).

 

For the past 4 days, the pain has gotten worse.  Today I would rate it at a 10 for the times when I have to get in and out of the car...or bend in any way...or even sitting.  I went to my nanny job today, and was able to maintain until about the last hour, when I could hardly do anything but stand up straight.

 

This pain is both abdominal AND in my back...the burping is mostly gone, but my abdomen still feels hard and bloated. (Is this benzo belly???)  I finally got really scared on my way home from work, and decided I would go to one of those neighborhood ER clinics.  Long story short, after lots of questions the doctor decided the main issue causing the worst of the pain is my back.  (I did try to talk about the withdrawal “stuff”, but it didn't get anywhere...).  But I respected this doctor tremendously, for reasons I will mention on my blog.  He knew about my medication fears, but said that I need to do something for the pain short term and then to go see my primary care doctor tomorrow to talk to him about further about if psoriatic arthritis could be causing this pain.  He asked if I would be willing to take a narcotic, just for a couple of days to get over past this crisis.  I said I would....because Buddies, I have NEVER felt this bad (and I have felt pretty bad over the past 2 years).

 

Here are my questions:

 

1)  Have any of you actually had withdrawal pain in your back/abdomen that approaches a 10 in pain level...that you are absolutely sure could ONLY be from withdrawal?  I am almost 18 months out, and I know that I still have withdrawal symptoms...but what about this?  Could this just be a really bad wave?

 

2)  Do you think that these supplements and things I took could cause a crisis like this, while my system is still so sensitive?  Have any of you had something like this happen that you would be willing to share with me? 

 

3)  Besides the “structural pain” in my back, my muscles in my abdomen, lower back, thighs, and under my ribs are burning like crazy.  I typically describe my nerve pain as burning...but this feels like there is a band of muscles on fire all the way around my core.  Have any of you had this as withdrawal pain?

Do you think the supplements could have “ignited” this?

 

 

I am to the point of  “surrender”, to admitting that maybe I DO have this arthritis (there are no absolute tests for this particular form.)  I do not think I can live with this kind of pain, where I cannot even move.  I feel like I need to make some decisions, but only my buddies here can help me know how withdrawal could be coming into play in all this.   

 

PLEASE forgive the length of this.  I absolutely apologize for this, but I am feeling quite desperate.  For any who have read this all the way through...and have some thoughts to share with me, I would be ever so grateful.

 

~Leena

 

[[Ka...]]

Dear Leena,

 

A message is being sent to you. 

 

Take care, and much love and prayers,

 

Kat

[[Ci...]]

...leena...

 

below are my answers

 

Here are my questions:

 

1)  Have any of you actually had withdrawal pain in your back/abdomen that approaches a 10 in pain level...that you are absolutely sure could ONLY be from withdrawal?  I am almost 18 months out, and I know that I still have withdrawal symptoms...but what about this?  Could this just be a really bad wave?

 

...i am not off of klonopin yet.  ...all i can tell you is that i have had ACUTE pain in my right abdomen...right side of my lower back...and...right hip.  ...it is EXCRUCIATING!  ...i KNOW that this is caused from both w/d and from an injury i sustained.  ...i get anxious...then the tension starts...then the pain hits.   ...it is NOT mild pain...either...it goes beyond a 10!

 

2)  Do you think that these supplements and things I took could cause a crisis like this, while my system is still so sensitive?  Have any of you had something like this happen that you would be willing to share with me?

 

...i believe that supplements could have increased your symptoms.  ..i..too..received acupunture...it made things worse for me.  ...i tried a chinese herb...a mixture....it made w/d and pain worse!

 

3)  Besides the “structural pain” in my back, my muscles in my abdomen, lower back, thighs, and under my ribs are burning like crazy.  I typically describe my nerve pain as burning...but this feels like there is a band of muscles on fire all the way around my core.  Have any of you had this as withdrawal pain?

Do you think the supplements could have “ignited” this?

 

...i can't answer any better than i already have...leena.  ...i have had pain since 1/09.  ...now that i have cut to .5mgs...i am in EXCRUCIATING pain....so bad that i could scream...beat on things...tear my hair out.  ...i am in torture and agony and nothing that i take relieves the pain.  ...i wish it did!  ...i woke up with it today.  ...it all has to be from our body still not producin enuff gaba and the gaba receptors still not functionin normally.  ...i have no other explanation.   ....the only other thing that could be things worse for me is that of sittin at a puter for hours.  ....however...i had slept many hours and woke up with exceptional pain.  ...tonite i am barely breathin as it hurts so greatly.

 

...i hope that others write to you.  ...i wonder why they haven't.   ...i know what it is like to have such concern...to write...to ask questions and not get replies.   ...i hope many more chime in.

 

...i don't have a solution.  ...if i did...boy oh boy...i'd be tellin you and everyone.  ...heat sometimes.  ..ice sometimes...hot bath...sometimes.  ...lots of rest...sometimes.  ...i am considerin goin to a pain specialist as i cannot keep livin like this.

...i hope you find some answers.

 

...keep grittin your teeth.  ...keep holdin on..leena.

 

-sam-

[[ja...]]

Oh sweet leena ..I am so sorry and I am praying for rt now..Hang in dear..I have to say I have had severe chronic pain for 4 yrs now and I also get more then my share of Kidney stones ..Have you ever had that checked be4? Sounds like lower back and front abdomen pain ..Like lower flank it hurts so much truely like child labor ..And does become a pain level of a 10..Just stay as calm as you can and if it becomes to much to bare pls go to er..Let them see for you ..Your in my thoughts and prayers today God Bless  Jenny

[[le...]]

Kat...thank you so very much for your messages.  They are very helpful and I appreciate your wisdom so much.

 

Sam...thank you for posting to me about your experience with pain.  We have "talked" a bit before, and I feel that we have much in common (though I am sorry that it is mostly related to PAIN). Thank you for reminding me about GABA and GABA receptors...I have been trying to do a search about this on Google so that I can feel more educated but also so that I can talk to my doctor this afternoon.  All my benzo knowledge just seems to turn to "mush" in my brain sometimes.  I wish that I had a more concrete understanding of what is happening with these receptors and how it can create SO many differing symptoms.  You would think I would "get" it by now, after so many months on the forum.  I seem to get some clarity...and then it seems to "leak" out of my brain.  I am terribly sorry for what you are experiencing.  When I can sit longer, I would like to "talk" to you about my experience with pain management.

 

Jenny...the ER doctor asked me yesterday if I had ever had kidney stones, and I told him that I had.  This pain is severe, but not as severe as when I had that kidney stone...but it is similar in kind.  I keep thinking that I have felt like this before...but I can't remember if it was early withdrawal or another time. 

 

I do have an appointment as a "work in" today with my regular doctor, since the ER doctor suggested I needed to do this.  (The ER doctor goes to my regular doctor, and thinks very highly of him...that was pretty neat to find out).

 

Thanks to all of you for your help!

 

~Leena

[[ja...]]

Leena ...Hello how are you feeling? My god I was thinking about you all day!!!

I have and many here have been praying for you and praying that recieve releif ,I hate to think your in such pain :'(..Your such a true  ..here!!! My sweet friend here once told me Angels arent supposed to feel pain ...I feel the same way ..Hopeing and praying today will be kind to you... ..Your worried friend Jenny

[[je...]]

Hi Leena, I am glad that Sam talked about GABA and you said "Oh, yes."  I am sometimes chidded for ascribing everything that is wrong with me to benzo withdrawal.  However, everything that is wrong with me is from benzo withdrawal.  I had some of the issues before benzos, but now whatever I have from upset stomach and headaches to high anxiety are a bazillion times worse.  We have all become scholars on benzo-related phenomena, and there are reports that healing goes on for years.  I hate that you are in such pain, but if other things are ruled out--cherchez las benzos.  They are the culprit.  I will add that anything I have taken by way of natural herbs and remedies have not helped and sometimes made things worse.  You are in my thoughts, and here are some flowers.  Take care and xoxox Jennie

 

 

 

Edit: Removed graphic from working board.

[[le...]]

Hello Jenny (with a "y"),

 

Thank you so much for your concern and your prayers!

 

Today I am feeling better...in fact, well enough that I am going to make it out to west Texas today (Lubbock) for my dad's 80th birthday celebration.  He just got remarried last summer and this birthday celebration is so important...with his new wife.  The party is at 3:00 tomorrow, and I am so glad that I will be able to help my sister (who is also going there from Austin today) get everything ready for the celebration.  This is a HUGE turnaround from last night.  I went to bed quite certain that I was not going to go.  I know this is a result of many prayers...both here as well as from my BB friends.  I am so thankful.

 

I am going to fly (it worked out with rapid rewards) and so I won't have the 8 hours in the car each way...which makes this feel much more "do-able" to me. We have just gotten the plans made, so now I have to help get my husband out the door so he can be there to pick me up at the airport.

 

You are so kind in your thoughts towards me, Jenny. 

 

I hope that you have a wonderful weekend and thank your for encouraging all of the buddies here.

 

Love,

Leena

 

 

[[le...]]

Dear Jennie (with an "ie"  )

 

I truly appreciate your thoughts here, which along with the thoughts of another buddy are helping me to see afresh just how devastated my body has become by the years on klonopin.  I was thinking about her words...and your words...and I realize that things that would not have affected me before might be affecting me terribly, just because of the changes that klonopin (and maybe other meds...I don't know) have wrought in my body.

 

I am seeing again how what might be good for a "normal" person might not be so good (in fact may be downright BAD) for me until my system is brought back into some sort of balance.  I have just put away the majority of the supplements that I have purchased and am only keeping out the ones that I feel pretty much for certain will not set off some sort of volcano!  I think the supplement for the acupuncture doctor (which would be good for anybody else...maybe) is what started the really bad situation I found myself in.  I know that is conjecture, but the more I think about it...the more I think it is accurate.  I may have other issues (perhaps this arthritis?) but I think the withdrawal is what is making my body so susceptible to flares like this.

 

I really appreciate, so much, what you have said...and thank you for the lovely flowers, Jennie!

 

Love,

Leena

 

 

[[Ka...]]

http://i113.photobucket.com/albums/n207/catts_02/YellowAscda.jpg

 

Much love & prayers Dear Leena 

 

Kat

[[le...]]

Dear Kat...

 

WOW!  Those are beautiful!

 

Thank you so much!

 

Am trying to get a PM off to you before I go!

 

Thank you SO much for your prayers!

 

Love,

Leena