Jump to content

Ravenvision: Long-Term Pain


Recommended Posts

Hi I am Raven,


I have been on Paxil for most of the past 20 years.....yes 20.   When I think about this I often feel defeated but I also have begun to think that I may be on it for life.  I am just going to be honest and let the chips fall where they may.  This is a summary of a long ordeal.


I became very sick when I was 29.   It started like the flu.....felt sick and threw up all the time for a week.  I felt a bit better after 2 weeks and wrote it off as a bug.   But about a week after that it got worse.  I went to a doc who gave me some zantac for the stomach issues.  I went through a cycle of get a bit better then worse.   I saw several doctors that tested for everything you name it and found nothing.   I had so many strange symptoms - insomnia, food went right through me, drastic loss of weight, strange nerve things (tingly feelings, vibration feelings that started after the zantac was switched to axid - a similar drug).....at one point I couldn't even really walk for a few days - my husband had to carry me up the stairs to bed for about a week.   The docs kept saying nothing is wrong with you........it's in your head.   I was at about 85 lbs at this point.   So I went to a psychologist cause damn lets fix this then if its "in my head"  -  over the following months she maintained that I was physically sick.  We worked on self hypnosis and other pain and anxiety reduction strategies.


The worst symptom was pain.......it would start in the morning and not stop until I could finally get to sleep.   No doctor would really treat that or believe it.......I had a few pain pills from the start of this ordeal that helped some.......but I was mostly in pain for 6+ moths.   I went back to work still very sick because I figured i can hurt and be sick at home alone or at work with people around.   I was probably taking about 12 tylenol tablets a day but that didn't make much of a dent in the pain.   At the end of the 6 months I was definitely depressed and considered that there might be only one way out - which terrified me beyond belief.   My psychologist said I needed to see a doctor and I needed to get on an antidepressant which I fought her on all those months.


So new doc says that I have some sort of horrible viral illness that can't be really defined - probably similar to "chronic fatigue immune deficiency", which was "new" around that time.  He said I was only person he ever met that he felt even had that illness.  He felt a virus was damaging my nervous system.   He said go on paxil to help with pain and depression.


Over the next 2 years I slowly recovered to being out of pain and living a mostly normal life.  I could work at my career and enjoy life.  Too much exercise or stress would induce some of the old symptoms - and still do to this day.   I had to eventually ramp down the career ambitions to fit the new me.


I have tried to quit paxil 3 times.   Each time I have had to reinstate for the same reason.  After awhile off the pain comes roaring back.   I have been able to finally determine that most of that pain is centered/generated by my digestive system and have a great gi doc now that believes my degree of pain will treat me properly.   I tried to quit about 2 years ago.....did a slow taper over 6 months (which is probably waaay too fast).   I was totally off for 5 months with some symptoms - grumpy, snippy, a return of panic attacks - that I was dealing with pretty well.  But when the pain came back I caved....I tried to endure it for about 6 weeks.   I took the PP advice to see what docs offered to treat it.   3 different docs said same thing - try a barbituate, a benzo, or go back on paxil and probably need it for life.   Paxil seemed like the lesser of those evils.   Two weeks back on paxil the pain went away.  


I am now 52, had a baby girl at 39, adopted another girl at 41, have a wonderful husband that stuck by me the whole way.  Life goes on.   Will I ever try to quit again.....I don't know.  Not until I get some good answers about why I get this pain but I'm not holding my breath.   You might find it interesting that anxiety/panic runs in my family - my dad, my sister, me and now my daughter do get panic with very similar symptoms.


Sorry for the long winded.     I would really like to hear if any of you had pain as a major problem.  I would also like to find out if anybody who did a really long taper - and not crash a few months after being totally off.   Thank you.



20 mg paroxetine for 20 years.  3 times stopped but unsuccessful each time.

Link to comment

Oh sorry to hear what you've been through..no I'm afraid I cannot relate. I'm hoping someone can relate and give advice but that must be incredibly difficult to deal with.

2000 - sertraline for job anxiety low confidence (17 years old) ..which turned the next 16 years into nightmare!


On/off sertraline severe withdrawals every time. 2014 - felt better as reduced dose of sertraline no more inner restlessness. Doctor rushed off again. Hit severe withdrawal. Lost the little I had in life. Couldn't get stable again on 12.5mg. Was switched to prozac. Had severe reaction to prozac..came off in November 2015 at 6mg as felt more confused and damaged on it..Even more withdrawal ..rage, depression, dyphoria, near constant suicidal ideation, self harm impulses, doom, concrete block in head, unable to do much of anything with this feeling in head..went back on 6mg of sertraline to see if would alleviate anything. It didn't..reduced from December to June 2016 came off at 2.5mg sertraline as was hospitalised for the severe rage, suicidal impulses, and put on 50mg lofepramine which in 2nd week reduced all symptoms but gave insomnia which still have..psych stopped lofepramine cold turkey..no increased withdrawal symptoms new symptoms from lofepramine except persistant insomnia which has as side effect.


Taking Ativan for 8 months for the severe rage self harm impulses 1-3 times a week (mostly 2 times a week) at .5mg. Two months (I'm unsure exactly when the interdose started to happen) ago interdose withdrawal seemed to happen..2 days I think after the Ativan.



Nightmare that could have been avoided!

Link to comment

Omg Raven. You have been through the wringer! I had Chronic Fatigue Syndrome for years, back in the days when no-one here had ever heard of it. Huge pain for years, went to doctor after doctor. All said nothing wrong with me. Luckily, I found a doctor who DID diagnose it and was set on the path off regaining my health and life. Was a long hard road, but I am fully recovered from it.


I wouldn't be coming off the paxil either if it were the only thing that stopped that suffering. I hope someone can shed some light on it here - fingers crossed.


I have crashed many times about two months off paxil, but this site has shown me that I have jumped off far far too early, so I am full of hope that this time, I will succeed by taking a year or two or six to taper the 4mg I'm on now.


Good luck Raven!

Put on Prothiaden for severe depression in 1989.  Recovered.   Prescribed Paxil for another bout of depression around 2000.   Have been trying to taper ever since but always crash about 2 months after getting to zero.   Because of the crashes, for years I thought that there was something wrong with me.   Then found that the crashes were simply withdrawal.   Now following a maximum of a 10% reduction every month or so and ready to slow down any time I feel any symptoms whatsoever.  Feeling good:).

7th Jan 15 - 3.6mg

28th Jan 15 - 3.2mg

Link to comment

I have a few thoughts,Mobutu certainly haven't been through that. What kind of "gut work" or work up have you had? I think more and more of us are affected by the changes in our food supply. I recently read that pain meds cause much more of a rebound pain than most people realize. A great book on this sort of stuff is The Diagnosis and Treatment of Chronic Fatigue by Sarah Myhill, MD. She has a website that contains a lot of the info from the book, website is free.


My experience was that I had widespread pain, diagnosed with fibromyalgia, but the pain went away when I stopped SRI's. But it doesn't sound like your situation matches that at all.


Good luck!

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

Link to comment

Wow your story is very close to mine. I had a flu 17 yrs ago that never went away. It ended up being diagnosed as fibromyalgia. I have noticed an increase in my body pain now that I m mostly off the paxil but I know at this point that it is withdrawals and I am hoping that it gets better with time. My pain from fibro was never this bad so it is clear that the withdrawals are simply amplifying everything. I will heal eventually and I hope the same for you. Welcome!

2002-put on amitryptiline for fibromyalgia. 10mg.2004-stopped abruptly. Didn't think it helped.2006 approx.-put on Paxil for mild anxiety 20 mg.2007 upped to 40 mg. not sure why.2011- tapered from 40 to 10. went nuts and went back to 20mg2014- tapered from 20mg to 0 from April to The end of June.current meds- Metformin(type 2 diabetic) and low dose aspirin.Take multi vitamin and vit b12, vit. D and magnesium. 5 months off Paxil. Still suffering.recently added 1.2mg of Paxil to alleviate withdrawals.(Nov 30)Dropped to .9mg because having symptoms from reinstatement.(dec 23)<p>taper to .76mg-.8mg (Feb 3) approx. weight .010 to about .008-.009 on scale.
.6mg (march 19th.) .5mg(April 19th)
.4mg(April 27th)
.2 (June 27th)

0mg.  done taper at beginning of August.

Link to comment

Thank you all for the replies.   CFS/Fibro is no fun but at least they think its a real medical problem now.  I have had plenty of GI workup.  I get an upper endoscopy and colonoscopy every 5 years now.  Also had a CT scan just a couple of months ago.  I try to eat "clean" food and will do better on that in 2015.  Allergies are part of the picture and been part of life since day 1.


Wishing you all the best in 2015 - things get better.



20 mg paroxetine for 20 years.  3 times stopped but unsuccessful each time.

Link to comment

Happy New Year to you Ravenvision! Hope you find some answers and some help here :)

Put on Prothiaden for severe depression in 1989.  Recovered.   Prescribed Paxil for another bout of depression around 2000.   Have been trying to taper ever since but always crash about 2 months after getting to zero.   Because of the crashes, for years I thought that there was something wrong with me.   Then found that the crashes were simply withdrawal.   Now following a maximum of a 10% reduction every month or so and ready to slow down any time I feel any symptoms whatsoever.  Feeling good:).

7th Jan 15 - 3.6mg

28th Jan 15 - 3.2mg

Link to comment
  • Moderator Emeritus

Hi Ravenvision, welcome to SA. I'm sorry to read that you have been suffering from so much pain, and that you had to go

back on the paxil. It is possible to get off paxil by tapering very slowly. We recommend cutting no more than 10% of the

current dose every 4 weeks but in your case I think I would do a micro taper which is much smaller cuts but more often.

With micro tapers the cuts are so small it is like 'sneaking' the drug away from your brain without causing disruption. 


I'll put some links up for you to read and then you can make an informed decision when you are ready to try again. 


The slowness of slow tapers. http://survivingantidepressants.org/index.php?/topic/2364-the-slowness-of-slow-tapers/

This taper would take years but if you are going to be on it for life otherwise it is well worth it in the end . 


You might find this interesting too, about PPI's such as zantac. http://survivingantidepressants.org/index.php?/topic/2533-that-acid-reflux-pill-may-be-causing-your-health-problems/


It would help if you could put your drug history in your signature, you will find a link to the instructions in my signature below this post. 

**I am not a medical professional, if in doubt please consult a doctor with withdrawal knowledge.



Different drugs occasionally (mostly benzos) 1976 - 1981 (no problem)

1993 - 2002 in and out of hospital. every type of drug + ECT. Staring with seroxat

2002  effexor. 

Tapered  March 2012 to March 2013, ending with 5 beads.

Withdrawal April 2013 . Reinstated 5 beads reduced to 4 beads May 2013

Restarted taper  Nov 2013  

OFF EFFEXOR Feb 2015    :D 

Tapered atenolol and omeprazole Dec 2013 - May 2014


Tapering tramadol, Feb 2015 100mg , March 2015 50mg  

 July 2017 30mg.  May 15 2018 25mg

Taking fish oil, magnesium, B12, folic acid, bilberry eyebright for eye pressure. 


My story http://survivingantidepressants.org/index.php?/topic/4199-hello-mammap-checking-in/page-33


Lesson learned, slow down taper at lower doses. Taper no more than 10% of CURRENT dose if possible



Link to comment
  • Administrator

Welcome, Ravenvision.


Have you looked into food intolerances? For example

Food sensitivities


Histamine intolerance


SCD/GAPS/Paleo Diets

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Link to comment

Hi Raven,


I'm very sorry about the suffering you have been going through. I have the same issue and in fact pain is my major problems on lexapro when I was on it for the first few years and also when I started tapering. I found most other ppl have mainly other issues when tapering so it's been hard for me to learn much in handling the pain. I feel I have all different types of pain over the years, needling, solid, sharp, tension, it comes either solo or combined on different areas, head, ear, jaw, face, neck, shoulder, back. They change like every few minutes, before and after dosing. They are so severe casusing me nausous and heart problems. I have them every single day. I took med round 10 am. Most days it lessons later of day like in evening. What is your pain like? Do they have a pattern?

Drug free Sep. 23 2017

2009 Mar.: lexapro 10mg for headache for 2 weeks.

2009-2012: on and off 1/4 to 1/3 of 10mg

2012 June--2013 Jan,: 1/4-1/3 of 10mg generic, bad jaw pain

2013 Jan-Mar: 10 mg generic. severe jaw and head pain;

2013 Mar--Aug. started tapering (liquid ever since) from 10 to 5 (one step) then gradually down to 2.25 mg by July. first ever panic attack, severe head/jaw pain

2013 Aug.: back to 2.75 mg; Nov: back to Brand Lex. 2.75mg -- 3mg,

2014 June: stopped PPI, head pressure/numbness. up-dosed 4.5mg, severe reaction mental symptoms added on

2014 Aug--2015 Aug: Micro taper down to 3.2mg, .025mg (<1%) cut holding 2-3 weeks.

2015 Aug 15th, Accidental one dose of 4.2mg. worsening brain non-functional, swollen head, body, coma like, DR

2016 Feb., started dosing 10am through 11 pm everyday 2/13--3.2mg, 3/15-- 2.9mg, 4/19-- 2.6mg, 6/26--2.2mg, 7/22 --1.9mg, 8/16--1.8mg,8/31--1.7m g, 9/13--1.6mg, 9/27--1.5mg, 10/8--1.4mg, 10/14--1.3mg, 11/1--1.2mg, 11/29--1.1mg, 12/12--1mg, 12/22--0.9mg

2017: 1/7--0.8mg, 1/15--0.7mg, 1/17--0.6mg, 1/20--0.52, 1/21--0.4mg, 1/22--0.26, 1/23--0.2, 2/13--0.13mg, 2/20--0.06mg, 3/18--0.13mg, 6/1--0.12mg, 7/6--0.1mg, 7/14--0.08mg, 8/17--0.04mg, 8/20--0.03mg, 8/28--0.02mg, 9/6--0.0205mg, 9/8--0.02mg, 9/17--0.015mg, 9/20--0.01mg, 9/21--0.0048mg, 9/22--0.0001mg,

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Create New...

Important Information

Terms of Use Privacy Policy