Support from those who have ever decreased meds

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 1/3/2011 8:13 PM (GMT -6)   
So, hospitalized approx. four months ago, pain meds were tripled in hospital, now attempting to go back to previous dosage level and I am sooooooo sick: physically it's like I'm moving throughout the day in quick-sand, absolutely no energy, I am so uncomfortable that laying down, sitting down or standing up are all painful. I've been seriously depressed for a week now to the point that I can't do anything but lay on the couch and stare at the walls for hours, it's slowly getting better, but very slowly ( and yes I'm on an anti-depressant). This experience has got me thinking that maybe I should get off of the pain meds completely b/c I am experiencing the dark side and I don't want to do this again, but in reality I am chronically ill and know I cannot go without relief. BTW: I'm decreasing b/c I'm going back to work and can't be this medicated and my tolerance is just increasing and what does one do, just go up up up, so I'm attempting to go back to previous levels to see if I can manage with lower doses.
Has anyone gone threw this? Anyone successfully decreased pain meds and still get relief after they've built a high tolerance?

BTW my DX;s are: Ulcerative Colitis, Fibromyalgia, IBS, severe GERD.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/3/2011 8:23 PM (GMT -6)   
Hello Lucy!

I have not been through this, or at least not to the degree you are, but wanted to support you. I'm a big fan of your's! You have one of those Big! Big!... Personalities, that I just love! smilewinkgrin

You have a great heart as well! I sure hope you can adjust to the level that you want, and that your suffering is a minium.

SE wink

southviewgirl
Regular Member


Date Joined Sep 2010
Total Posts : 64
   Posted 1/3/2011 9:24 PM (GMT -6)   
I'm sorry Lucy, you're having to go through this. I have had some withdrawl symptoms when I ran out of med's before I could get in to the doctor, but not as bad as you're going through. I did feel lethargic and achey, and just slow.

I was in the hospital 2 years ago for a month, and I was on some pretty high dosages of several med's, then I went home on them, and slowly weaned down to my normal dose. The key there is slowly. It will take some time for your body to adjust and to get relief again. Your doctor should be able to help as well.

Go slow, and keep us updated.
-We must be the change we wish to see in the world-
(Mahatma Gandhi)

*Scoliosis, Degenerative Disc Disease, Spinal Stenosis, Osteoarthritis, Loss of Lordosis, Endometriosis, Kerataconus, Flast back syndrome, TMJ, loss of bladder func. indwelling cath. for 6 months.*
*20 surgeries- 8 spinal including 6 fusions and 2 for staph infections, 9 pelvic including full hysterectomy, 1 knee, 2 cesareans*

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 1/3/2011 9:54 PM (GMT -6)   
Lucy,
You said that you were on much increased dosages of your medications and now are attempting to reduce your dosages. Are you doing this under the supervision of your doctors? I am asking because if a tapering plan is done correctly under medical supervision, you shoud experience little to no withdrawal .
I have tapered off medications several times over the years, and if done under the supervision of your doctor, he should be able to provide you with a written plan that reduces your medication intake by a certain percentage every couple of days and you shouldn't really be able to tell or barely experience any withdrawal effects at all.
Sandi

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 1/5/2011 9:52 AM (GMT -6)   
Thanks to all the replies and best wishes. Yes, I've discussed w/ MD. The biggest challenge I face is that I have consistent stomach pain anytime I eat ANYTHING, on occasion even if I drink, so, pain is still present while lowering the meds, but I need to go down to be able to go back to work. Four month ago my body started rejecting food, couldn't even drink water, lost 25 lbs in two weeks, so away to the hospital I went. Ever since, I barely have an appetite, the smell of food makes me nauseous and I mainly have to stick to liquids--talk about no energy. Oh, and I have a major vomiting and diarrhea problem. Now you say with all this going going why would you go back to work, well, after being off three months for medical disability, my employer requires me to pay out of pocket for my health insurance and that eats up into my disability checks big time. My MDs continue to run ever GI test on a regular basis to make sure infection doesn't set in so I need the insurance for sure. I truly believe most of the depression-now that I think about-is due to my very challenging situation.

I'm sooooo tired. I told a friend the other day as we were watching football that I feel that I've been on the field for a very long time getting constantly tackled and I have not been able to sit on the side line to take a rest in years.

On the positive side, ha, if there can be one, I constantly get complemented on how thin my body looks and clothes looks fabulous (insert sarcasm here). When I tell people why I'm this way some actually say they wouldn't mind getting what I have for awhile to lose weight--people are out of their minds. I guess in our society it's better to look good than to feel good.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 1/5/2011 10:39 AM (GMT -6)   
Lucy,
I feel for you with the stupid comments. When I was very sick & way below my healthy weight range people made the same dumb comments to me -- especially my tailor. Ohhhh, it just really pissed me off. She kept asking me how I did it & wouldn't believe me that I wasn't trying to lose weight.

As for cutting down on the meds... I wish I had better news but it just took me a really long time. I tried to go faster, but all that did was cause a huge setback & I ended up back in the hospital. Do ask for something for the nausea/vomiting. There are all kinds of options. For general nausea, I liked Zofran the best. For nausea from w/d, I liked Promethazine. When I was really, really sick, I would go in for a shot of Reglan.
Also, you really do need to eat something. Go slow & try to pick something that has at least a teeny tiny bit of appeal, but eating actually will help with the nausea over time. They say that BRAT (Bananas, Rice, Applesauce, Tea) is the easiest diet to manage when sick, but mostly I hate all those things so I just picked things that I would eat, added plenty of seasonings to them and would aim to eat at least 2 bites of whatever I fixed. Ginger is calming to the stomach so I ended up fixing ginger chicken a lot, gingerbread cookies (yum!), and then would look up other ginger-based recipes to try.

As for the alertness, have you tried Provigil (or Nuvigil)? I know, it's another pill to take, but it really helped me when I couldn't get off the meds fast enough. My boss said she couldn't believe the difference. I will say it's probably not safe to drive with Provigil b/c you're not awake in the normal sense of the word, but other than that it's great. I was able to continue to work with hundreds of millions of dollars in transactions every day without making any errors. Often it's a bit of a battle to get insurance to cover it, but it was worth it for me. Also, sometimes psych offices get free samples. You'll have to just sleep on the weekends (not much energy for housework & you do need the sleep) but it will get you through the weekdays until your body can handle the lower dose and still function.

I hope that helps. I just want to cry when I read your story b/c it's so similar to the nightmare I went through. I was so scared about losing my job & eventually, when the economy went south, I did lose it but I lasted for quite some time there thanks to many more meds than I'd have liked to have been taking.

Oh, one more thing, you DO need to eat, but a second source of energy is Ensure. It comes in several flavors and has a whole bunch of calories and protein and vitamins and whatnot. I would put it in the freezer until it got slushy and then would drink it like a milkshake. Last but not least, pick a few foods and tell yourself that you like the taste of them. Be positive about your eating experience (I know it's not easy). Your brain can be tricked a bit and with enough reinforcement it will start to think that food tastes and smells pleasant again (even if you think it smells like #$%^ right now!).

many blessings,
frances

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16799
   Posted 1/5/2011 1:31 PM (GMT -6)   
Lucy I think I have posted to you before about this nutritional drink, its called Breezes made by Boost. You cannot find them in the stores but c an order them by the case from Boost online. This is what the dr orders when I have been admitted because of flares with either CD or UC. They are a fruit flavor instead of the nasty milk type drink and very good when cold. You can actually gain a little weight while drinking these too.

Also, has your dr ever tried you on Lialda for the UC? I went off of it several months ago, just did not get it refilled and now I am paying the price of not refilling it. A few more days it should turn things back around for me. As Frances said Zofran is awesome for the nausea, I wake up with it nearly every day. If I don't have nausea when I wake up I will have it before the day is over.

Take care.
Moderator Chronic Pain Forum

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 1/5/2011 1:35 PM (GMT -6)   
Hi Lucy -
I don't have anywhere near the problems you have, but I do have a rotten back, fibromyalgia, GERD (operated, but needing a re-do), bowel problems not labeled yet but possibly due to fibro and loss of nerves due to polio.

Every time I end up in the hospital: stomach surgery, knee and hand surgery, diverticulitis, ... I come out on pain meds and it takes a month or two to feel well enough to wean off. I actually end up feeling better off the meds!

Same for the fibro drugs. I've tried everything my pain doc has suggested, and I feel better off all of them - except for tramadol.

You want to get off your meds, so you will probably wean yourself off over time, and I'll bet you will feel better too. I expect, like me, you'll still need something for the fibro, but it would not be surprising if you feel better without the antidepressants. Those never made me feel less depressed! But off them, I only feel depressed when I'm hurting. As soon as the tramadol kicks in my mood lightens too.

Best wishes.
Alcie
 
 

Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 1/6/2011 3:39 PM (GMT -6)   
Lucy,
I haven't been on here lately, but it was all due to being terribly sick and really, really depressed (and I too am on anti depressants), so hello! My name is Stac or Catz4, whichever you prefer. In my own illnesses, I have found that depression can be the cruelest of all cruel things when someone is hurting anyway! I would say to follow what your body tells you because you know your body better than anyone else. Please make sure you get some sort of nutrients and plenty of liquids though! The lack of those will start a whole other battery of symptoms and that is certainly not something anyone needs! Please keep us updated on this. I care and so do others as you can see.
I will keep you in my thoughts and pray/hope that this gets resolved rapidly.
Take care,
Stac/Catz4
Stac/Catz4
DX’d-Syringomyelia C-1 to T-1, DDD, Diabetes Type II, Migraines, Chronic Muscle Spasms, IBS, Panic Disorder, ICC, Hypothyroidism, Bipolar Disorder, CFS, Fibromyalgia. Emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06. Frozen Shoulder and Torn Rotator Cuff in Left Shoulder. Surgery for shoulder recently, now in Physical Therapy.

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 1/7/2011 1:39 AM (GMT -6)   
Hi all, thanks for the thoughts and recommendations. Straydog: I tried a Breezes in the hospital several months ago and didn't care for it, too sweet for me; I have developed a very hypersensitive palette, salt and sugar if just slightly overdone can really put me off (and people appear to be having a love affair with salt and sugar--and fat!). I mean what's with so called "health" bars, Luna brand especially, there's a smores bar, cookies and cream, caramel this and fudge that, um, tangent there.
Frances: been on Zofran for four months and it's the best, I use to get Reglan which did nothing--found out MD didn't prescribe in the first place b/c of cost, HMO's always start with the least expensive med; cost of Zofran w/o insurance is approx. 1600. for 40 pills.
Doing much, much, better this week, depression lifted. Back to work PT which is physically challenging, but has done wonders cognitively. One hour at a time.......
Lot's of compliments at work on how skinny I got, I guess you can never really be to thin, no matter how you get there.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 1/7/2011 4:28 PM (GMT -6)   
L-
Glad you're feeling a bit better. Crossing my fingers that you continue to improve a bit each day.

blessings,
frances

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16799
   Posted 1/7/2011 11:55 PM (GMT -6)   
Big Lucy has your gi dr ever tried you on Lialda for the UC? I don't remember you ever speaking of what medication you are on for it. I have been on Zofran for several years and it has been a life saver for me.

Hopefully you are on the upward swing of things and they will just continue to get better as times moves on.
Moderator Chronic Pain Forum
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 8:14 AM (GMT -6)
There are a total of 3,006,383 posts in 329,333 threads.
View Active Threads


Who's Online
This forum has 161830 registered members. Please welcome our newest member, dcbumstead.
259 Guest(s), 8 Registered Member(s) are currently online.  Details
SoMuchFun, Cigafred, mattamx, jeffkrauss, 1000Daisies, getting by, Bluecrab, ddyss