4 years off and plus group

[[Te...]]

Sweet pea......yes we would love for you to join the group ...anyone is welcomed just don't want to scare ones that haven't been through the journey as long....please let me know how your PT goes I'm doing it for my upper right arm/shoulder....hugs to you and your cat

 

Seeking....have you noticed any negative things from the quell device....please keep me updated as I'm thinkng about buying on off of amazon...

 

TM

 

 

 

 

[[ra...]]

Ali - I am astonished at your kind description of me as I don't see myself as anyone special, just a fellow BB trying to get through this very, very cruel experience  as best I can,  getting and giving encouragement  where I'm able, seeing us as strangers separated by distance, but friends united in our cause to support one another  along our journey into recovery.

 

Your group sounds a positive experience - I just wish the positivety  I once held dear hadn't deserted me this past 4th year and I hope in time I can shake off the negativity currently engulfing me in this brutal wave, as poor old Ian must be sick of the sound of my voice crying down the phone.How do these kind, caring help liners do the work they do listening to so much misery every day.  In my book they truly deserve a medal.

 

I used to ride - mostly cross country - miss it greatly but gave up after a fall 28 years ago age 46.

 

 

Regards - racksha  :mybuddy

 

 

[[Se...]]

TM, can you buy it from Quell directly as they have a money back guarantee if it doesn’t work.  I don’t think that Amazon does but I’m not sure.  I’d hate to see you buy it and find it doesn’t work for you.

 

So far, it has been great.  Really amazing to me.  I started last Thursday.  Yesterday was busy, didn’t put it on and I can really tell the difference, this morning I was back to generalized pain again (ugh) so it is back on.  I saw a difference within just one session.  I’ve been in so much immobilizing pain since September.  Within one 60 min session last week, I was able to get up and get going much better, the pain went that day from a 7 (0 to 10 scale), absolute agony for me, to a 2.

 

I wish I had tried it before.  It was here on hand.  Not sure what was stopping me.  I think, inexplicably, that I thought it wouldn’t make much a difference in my case.  Boy was I wrong.  It is not a cure obviously but anything that enables me to live my life better is so appreciated.  Apart from my muscle pain, I’ve healed a lot.  But to say muscle pain doesn’t really begin to describe how debilitating the pain has been.

 

In my case, once the pain flares up it generalizes and spreads.  It is like my brain is on fire with pain, my whole body hurts.  I just end up crawling back into bed and curling up, nothing touches it.

 

Somehow, I managed to stagger through the fall and keep us alive.  I managed to rehab my horse from his colic surgery and hand walk him every day despite the fact that as he healed he was a wild thing.  My right arm is hanging by a string from him acting up on me the final 2 weeks before we got the go ahead this Monday to turn him out off the lead line by himself.  It has been a long 2 months!

 

I see that the Quell has a 60 day guarantee:

 

https://www.quellrelief.com/returns/

 

 

Ali

[[Se...]]

Raksha, you are a rock and a star.  You’ve been through so much.  I’m glad you have the telephone support.  I told our local benzowise specialist who medically has supervised so many tapers over the past decades that he is an angel on earth.  Unsung and largely denounced by his fellow MDs, Dr. James Wright is a clinical Pharmacologist and the head of the Therapeutics Initiative here and has been talking about the dangers of this class of medication with doctors and pharmacists forever:

 

http://apt.med.ubc.ca/pharmacology/faculty-and-staff/dr-james-wright/

 

I’m glad my words lifted your spirits.  There are so many incredibly kind people on BBs, and of course the moderators are amazing.  Angels on earth.

 

 

Ali

[[be...]]

Sorry did not finish am tangling with the cat to type, he does not want me too, wants all the attention.  I have now progressed to pelvic floor exercises, still having one spot on a muscle on the right side that is giving me most of the distress. 

 

Sweet pea

 

Sweet pea, did you have the internal trigger point release? Also, what kind of pelvic floor exercises are you doing..if you don't mind sharing? I was in pelvic floor pt for three months my first yr off.

They did help me to sit more comfortable but I didn't have all these muscle spasms then...do you have muscle spasms in your pelvic floor? 

I ordered "The Wand" to help with the tight muscles in my pelvic floor but it doesn't help much.

Hope you get relief.

[[Te...]]

Susan ....that's how I would describe most of my pain it usually starts in mouth and goes on and some days I have such high anxiety....it's like I'm ramped up with pain and anxiety feeds off of it..

 

I have this bad taste in my mouth almost with teeth and burning mouth 24/7...and I've seen so many dentist,oral specialist,holistic,and burning mouth specialist....of course only one agreed it could be from clonazepam...but most thought it was my  silicone breast implants so I removed them this summer and ended up in a mess....I got a hematoma which ended up given me two gram negative infections and a total of seven weeks of antibotics and from the whole thing..I've seen no changes in symptoms only worse

 

So I'm praying for windows and better days...

 

Hugs

Everyone

TM

 

[[be...]]

Tm, sorry for all the trauma you went through with the breast implants removed and infections.

I remember when my mouth burned badly for months...it was horrible. I also lost all of the feeling in my mouth..couldn't feel my teeth or tongue. One morning I woke up and the feeling was back..a few days later the burning eased up and was tolerable but not gone yet...it went on for a few more months and gradually went away. I could tell it was nerve burning..no other burning like it.

People have burning in and on many places in their bodies so don't think for one minute that you are alone in this or that you are different. Wd does not discriminate..it will burn anyone anywhere anytime it pleases. The burning on my body has not stopped in four yrs..just gets better.

I know with this kind of suffering it's hard to hold on day after day..but hope is all some of us have.

Hugs

 

[[Te...]]

Beulah....I just read your post it was so nice to hear from you again....my mouth has really been bad lately....some days it's all I can do to keep myself together...like tonight....my mouth symptoms are so severe.....it can produce high anxiety....then my teenage daughter is having a teen moment which is not helping.....

Thanks for the uplifting post

TM

 

[[Ko...]]

TM, thanks for starting this group.

 

I’m in my 50th month and most of my terrible withdrawal effects are gone with the exception of boatiness. I was suffering terrible neuropathy burning pain in my lower legs but I’ve solved that problem by using the Quell pain relief device.  I believe it can help any of you with your pain. There is no risk involved because you can get your money back if it doesn’t work. You can buy it from Amazon or any drug store like CVS, Walgreens, Walmart etc.on line. They all charge the same and Quell guarantees your money back.  It cost $249.00. The only people that can’t use it are those who have knee or hip replacements or any other metal device implanted.

 

Now if only someone could figure out how to get my balance back. I’ve been to two neurologists and

one said there was nothing wrong and probably was benzo related. The other one wanted me to try

high doses of gabbapentin. Really! There was no way I was going to do that.

 

Hang in there.

 

Korbe

 

 

 

 

 

[[ra...]]

I  would give anything to feel well enough to post a positive message on here - I recall saying to my husband this time last year that I felt 2017 would be my year of recovery - How wrong I was, because this past 4th year things have got worse with new sx jumping on the band wagon.

 

Ian singleton told me that the last months of his wd he felt a lot worse as the sx built up to a crescendo  before he felt healed - This should reassure me, but the difference being when this happened for him he was at the 18th month off, whereas I have just reached my 4th year off, yet am feeling like a bloody train wreck, especially as my anxiety has now, understandably, returned. And am so ENVIOUS of normal folk. :'(

 

ANYONE ELSE FEELING WORSE THIS FAR OUT as I can't understand how this can be healing if one is feeling worse the further out you get ?????

 

 

Have no intention of seeing a quack as I no longer TRUST - And I Believe it IS drug wd  related because I do get the odd hour, usually late evening, when the sx get a lot less, whereas mornings and most of the day time are still a nightmare, so no way am I consulting someone likely to dismiss any wd and just want to hand out more pills. - NO WAY.

[[Te...]]

Racksha

 

I feel the same way....more symptoms and stronger nerve pain...and my lips are on fire last night I went to bed with pains in so many different spots ...I wonder why.....

 

Maybe others can chime in and tells that why saw great healing begin after there four year....

 

Korbie.....did the quall device take away your burning? Do you think it could reach the mouth ...for mouth burning ....sorry if I'm sounding weird ....but most of my I tense burning is in my mouth...thinking if it can reach shoulders it might help my mouth...any thoughts would love to hear

 

TM

 

[[Se...]]

TM,

 

The Quell device works centrally on pain via the brain.  They have some good descriptions of how it works, basically activating the brain’s own pain mechanisms.

 

I’ve found it to be effective for me and my pain is quite severe when I’m in a wave.  It also generalizes from my right side, when that happens it is as if my whole body is suffused in pain.  I guess I was sceptical that it would help me, that. Is why I held off using my husband’s device for so long.  It has made a big difference to my ability to cope.

 

I think it would be worth trying and they have a 60 day money back guarantee.

 

The first day I used it, I went from a 7 or 8 level of pain, down to a 2.  At 7 or 8, I’m immobilized basically.  At 2, I was able to drive into the city and attend a meeting.  A huge difference.

 

It does have to be used every day to be effective.  I missed a day, two days ago, because I was busy and I was feeling better and my pain ramped right up again.

 

I’m thinking of purchasing a 2nd unit for me as my husband’s pain is off the charts at the moment and we are sharing it back and forth.

 

I can’t wait until this wave settles down.  I hope that it brings me to a new level of healing, the past 4 months have been incredibly difficult, like being back in acute.  I’m so done.  Can share everyone else’s pain on this front.  This is truly the most difficult journey I’ve ever been on.

 

 

Ali

[[be...]]

TM, thanks for starting this group.

 

I’m in my 50th month and most of my terrible withdrawal effects are gone with the exception of boatiness. I was suffering terrible neuropathy burning pain in my lower legs but I’ve solved that problem by using the Quell pain relief device.  I believe it can help any of you with your pain. There is no risk involved because you can get your money back if it doesn’t work. You can buy it from Amazon or any drug store like CVS, Walgreens, Walmart etc.on line. They all charge the same and Quell guarantees your money back.  It cost $249.00. The only people that can’t use it are those who have knee or hip replacements or any other metal device implanted.

 

Now if only someone could figure out how to get my balance back. I’ve been to two neurologists and

one said there was nothing wrong and probably was benzo related. The other one wanted me to try

high doses of gabbapentin. Really! There was no way I was going to do that.

 

Hang in there.

 

Korbe

 

Hi Korbe, I remember your posts about the neuropathy and pain in your legs ..unfortunately I still have it. So happy you don't have it anymore.

How long did you use the Quell before you noticed results? Did you have neuropathy in both your legs?

A friend told me about the Quell and I am seriously considering ordering it.

Sorry about your balance problems..I also still have them..but a little better.

Be well!

 

[[Se...]]

Beulah,

 

Sorry to jump in here but I wanted to tell you that the Quell device worked right away for me.  You have to use it every day for it to be effective.  I used it 5 days straight then didn’t the next day and my pain ramped right up again.

 

I’m sharing it with my husband but seriously contemplating buying my own unit after my experience this week.  I was sceptical I guess, that is why I had the device here but didn’t use it for this length of time.  Last week, after a particularly horrendous few weeks, I put it on for the first time and within 60 minutes my pain went from a 7 to a 2 on a 10 point scale.

 

It has made a profound difference when nothing else has recently since my wave in September.

 

I honestly can’t see a downside to trying it.  It has NOT revved up any symptoms.

 

 

Ali

 

[[Te...]]

Does anyone else notice that some symtoms seem to get better where there is just a hint of the pain for it to come back months later but much worse...

 

TM

 

[[ra...]]

Wish someone would answer my question as am  feeling  somewhat invisible and am only  seeking info to see if It's  not only me

[[be...]]

Beulah,

 

Sorry to jump in here but I wanted to tell you that the Quell device worked right away for me.  You have to use it every day for it to be effective.  I used it 5 days straight then didn’t the next day and my pain ramped right up again.

 

I’m sharing it with my husband but seriously contemplating buying my own unit after my experience this week.  I was sceptical I guess, that is why I had the device here but didn’t use it for this length of time.  Last week, after a particularly horrendous few weeks, I put it on for the first time and within 60 minutes my pain went from a 7 to a 2 on a 10 point scale.

 

It has made a profound difference when nothing else has recently since my wave in September.

 

I honestly can’t see a downside to trying it.  It has NOT revved up any symptoms.

 

 

Ali

 

Thank you so much for the info. I'm ordering it..I'm desperate for pain relief..this all over body pain can take a hike.

[[be...]]

Wish someone would answer my question as am  feeling  somewhat invisible and am only  seeking info to see if It's  not only me

 

racksha, sorry..just saw your post. No..it's not only you..This week I have felt near death. My pain symptoms have gone all the way back to yr one..wth.

At 4and a half yrs out how does this happen? Don't know if it's a wave or a setback or what..just know I'm suffering big time with so much pain in my body. I have a lot of pelvic floor pain, pain and all muscles with so much squeezing I feel like I'm being tortured.

Nothing has changed, I'm still eating the same boring food with nothing new. No added anxiety or stress. No changes at all. This keeps happening throughout my wd.

I go forward for a while then backwards. Sometimes the backwards isn't so bad..then other times it just about kills me.

This whole time I have never had a pain free day..never ever. I only get a little better. Do you feel worse in the wintertime? I do. But I also worsen if I go into the bright sun in the summer for any length of time.

Sometimes I sit on my patio in the summer to soak up some d3 because I'm low in it. If I stay out longer than an hour my pain revs up.

I don't know what kind of pain and suffering you are having but I do.remember  you have a lot of nausea and not able to eat much...also weakness. I.still have a lot of weakness that I feel is due to my muscles being out and not working properly...I can feel.it's coming from the brain as most of my.symptoms are Neuro.

I wish with all my heart something I could say or do to help you..but the only thing I know is to share my healing journey with you. If you were hear I would make you a hot pot of soup and we could spend days talking and comparing. Sometimes I think that would be more therapeutic than anything. It's what we all need..togetherness, this is a lonely journey but don't ever think you are alone in your suffering. I hope you get some.relief soon. Many hugs!!

[[ra...]]

beulah - thank you for replying - much  appreciated. It would be so good if some of us could pop in for a nice hot cuppa and chat together every now and again - it would do us all much good - so as it's not possible it's good we can chat around the globe on bbs site. 

 

I  am sorry you're still suffering - it's beyond cruel that this vile experience can go on for so long causing soooooooooo much suffering to sooooooooooo many - It makes me soooooooooo angry

 

HUGS BACK 

[[Be...]]

What really stinks for me is that I've got other medical conditions.  Diagnosed with Lupus and it's the type that attacks the blood vessels and can cause seizures which can cause brain damage.  I feel like I'm always on the verge of having a seizure.  CNS Lupus.  No wonder I'm such a mess and have such poor mental functioning.  Diagnosed with Thrombophilia too--at risk of stroke or heart attack.  My circulatory system is a mess. 

[[Ko...]]

TM & Beula,

As far as the Quell goes I agree with Seeking Sanity. You do need to use it everyday, and even at night. Some days my pain is gone for 3 or 4 hrs, nut then it will come back. So you just put the Quell on again to get relief.

 

Yes Buela, I have the burning pain in both legs. TM not sure if it helps with mouth pain but it’s worth a try.

 

Korbe

[[ra...]]

Becks - you know how I feel about your situation as have commented many times that to do it on your own as you have to, with so many other conditions, must be horrendous for you and so hard to cope with. You are one very brave and stoic lady and I keep you in my  thoughts and prayers, as are all who suffer in this world.

 

As you know I, too, have other probs like heart and stomach stuff, but am fortunate to have lots of help via my husband, so whilst in these dreadful barbaric waves I can just rest up in my bed, and right now as it's brutal  am doing just what Ian Singleton told me to do when I first got ill - EAT - SLEEP - AND JUST KEEP THE BODY ALIVE TO HEAL.   

[[Te...]]

Thanks Korbe....it's my worst burning my mouth....but someone said it helped their shoulders so I guess the only way to know is if I try it...

 

Becks....do you have any pets?

 

Doesn't it sound so easy....eat....sleep...and heal.......if I didn't have that anxiety sneaking up on me with the pain...maybe it would be easy....idk

 

Hugs

To everyone.....

 

Football games tomorrow.....oh who will go to the big Super Bowl?

TM

 

[[Be...]]

I do have a cat named Lily.  She's my best friend.  I don't socialize with anyone anymore since I'm so sick now and am housebound except for walking up and getting the mail.  I'm alone and isolated 24/7.  The only communicating I have now is on this forum.  I can hardly talk anymore and can only type.

[[ih...]]

Hi Becks & Lily. Cats are great company, I miss my two badly, (both lived well into their 20s. I cant wait until i am stable & financial enough to commit to another pet. I love dogs too but cats are able to have more zen periods than dogs. who when not sleeping or eating usually want to be entertained.

 

Becks, please don’t take this as diminishing your suffering and hardship in any way but its clear from the way you write that you are still one smart woman. I know the lupus complicates things but with your strong cognitive reserve, i think that you still have good prospects of a better life after some more benzo healing.