Ravenvision: Long-Term Pain

[Ravenvision]

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.

 

Raven

[LoveandLight]

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.

[Ever]

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!

[Meimeiquest]

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!

[Frustrated]

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!

[Ravenvision]

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.

 

Raven

[Ever]

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

[mammaP]

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. 

[Altostrata]

Welcome, Ravenvision.

 

Have you looked into food intolerances? For example

Food sensitivities

 

Histamine intolerance

 

SCD/GAPS/Paleo Diets

[LexAnger]

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?