Hi All, My name is Sarah and I just signed up on here a couple of days ago. My meds are lidted on my page but i take cymbalta 60mg/day (which i think is actually starting to help), xanax 2xday, and baclofen 3x day....although i have noticed an improement in my mood, and my hands havent been cramping up(surprising because here in michigan the last couple days its been below zero!) I have a torn rotator cuff and a lipoma(fatty tumor) that have been causing me a lot of pain, besides the random breakthrough pain...ive been sick for four years diagnosed with lupus in april but u of m has ruled its just really bad fibro...at least it won't kill me right? But I have pain issues with my kidneys and have been having heart issues...goes on and on. I also take ultram 50/mg 2xday for pain, and when i ask she will give me norcos 10 at a time per my request...I used to have a pain pill problem but have been sober for 6 yrs but having issues to where I now need these drugs is messing with me...i know im taking them becuz i need them but its just awkward asking her although she is great and has given me anything i have asked for....but is there anything stronger than ultram besides norcos that works well when the pain is unbearable but asking for it wont make me look like the drug addict i used to be? and has anyone found a muscle relaxer that actually works? ive moved from flexeril to baclofen and neither seem to do anything :( thanks for any input...i just want to be able to get dressed before noon and get a job again at some point!!!
Hello Sarah, I take cymbalta also, 150mg/day, 30 in the morning, and 120 at night. For breakthrough pain I take tylenol 3's and nabilone at the same time, it helps. I am currently being weaned off narcotics, and am still on 50mcg fentenyl. (was on 125mcg's and percs). What I'm taking now is helping. Sorry I don't know what baclofen and ultram are? I wish I could tell you something helpful, but my drugs are being shuffled and changed often trying to find the best combo. Everybody on this site have different combo's of meds, everyone is different. Good luck, and I glad to know you have a doc that listens. Charlie :)
Hi Sarah, you have definitely come to the right place to for support, information and understanding !
Congrats on getting clean, that is just so awesome… So I can understand your concern about pain meds. Personally I have not been able to find anything that works, the ultram ( Tramadol ) seems to be a favorite of the dr’s , but it didn’t help, the Lortab ( Vicodin ) and Percocet causes me nervousness increased heart rate and head ache, so I’m currently only taking my Savella ( which does help ) and 2 Tylenol . I was actually given a low dose 12.5 fentanyl patch, it worked wonders for two weeks. Then it just stopped working,. And after reading story after story of how you have to keep increasing it and it doesn’t help after a while and then the withdrawal is a night mare I decided against it.
Now I am just trying different diets, exercise and stress reduction, lots of sleep and frequent rest period with yoga stretches and my heating pad, around daily activities … So far so good,
Taking one day at a time !
Hugs & blessings
dee
Hi Sarah and welcome. You have come to a great place for support and understanding. I am new as well and have had much support since I started on here. I tried Cymbalta but it did not work for me .. We are all different and from what I have read on the site different things work for different people. I am sure you will get a response from someone with more experience than me. I also take Gabapentin and arthrotec along with a tylenol #3 for the bad days . I am still in pain and still waiting to see the rheumy doc for my first visit. Anyway I just wanted to say HI and welcome you. I do hope you find what works for you . Big hugs Lisa
congrats on getting off the pain meds. that must have been hard and i can see why u r leary about what u ask for now. right now all i can think of as far as muscle relaxers is called skelxian. i am pretty sure thats not spelled right but if u call the dr they should know what it is. i have never used it caused flexerial is working right now.
what dose of narco do u take? for me i have to take 2 of the 10/325 at times and that only cuts the pain in half. i have used narco so much its not really working. the next step up from narco would be oxicodine combined with either tylenol or asprin. one is called perocet and the other perkodent(spelled wrong sorry). from there u move to morphine then fentanyl. there is dualited which is hydromorphine. as far as something stronger than altram i am not sure.
my knowledge of these drugs comes from 2 places 1 helping my mom study to be a nurse 2 being on this site for a long time u learn alot. some if it is from persoonal use too.
i think you just need to be honest with your dr and let them know that what u r taking now is not helping and that u need a change in meds. this is very commen for fibro patients. dont think that u r heading down the path of abusing drugs. that is not it at all. u have a chronic pain disease and your meds will have to be upped and changed and u will need stronger meds at times. please dont be afraid to ask. u know yourself the best and it sounds like u have a great dr which in our world is very hard to find. try to be patient and try new things till u find what works for u.
a warm welcome and many hugs
Welcome to the family Sarah!
I take both Cymbalta and Ultram. I take 120 mg of Cymbalta every day and at least 200 mg (1 pill 4x a day) of Ultram each day. I can take up to 400 mg (2 pills 4x a day). On days where I still have break thru pain I also can take 2 Arthritis Strength Tylenol. I also have osteoarthritis and take 2 200mg capsules of Celebrex. This combination has been working for me. My dr won't give me anything stronger for pain at this point since most of the time this seems to work. I have a problem with addiction so I haven't really pushed for anything stronger the times this hasn't helped. Thankfully it isn't that often.
I hope what we've shared helps you. Everyone here are more than willing to share their experiences or just listen to one of us venting. We're all here for the same reason. Let us know how things go.
Gentle Hugs!
Dottie
Welcome Sarah! I live in Michigan too. (I'm about 20 miles south of Detroit).
Be careful with U of M. My Rheum there tried to take away my lupus diagnosis and wanted to take me off of my meds. My internist was not happy. He said "No, we're not doing that", so I fired her and he is treating my lupus and now the fibro. I was diagnosed by a different Rheum, and my internist said he sent me out there for treatment, NOT a second opinion. Make sure someone keeps an eye on that and does lab work periodically to look for issues besides fibro.
All I'm on right now for fibro is a baby dose of gabapentin at bedtime and Wellbutrin SR in the morning. The fibro seems to be pretty mild at this point (I was just diagnosed in December), but what I'm on is not helping my back or foot pain. The Wellbutrin gives me a nice energy boost though, and the gabapentin helps me sleep.
I don't take pain meds, so I can't help you there. Anti-inflammatories when I have to. My doc works really hard to get what's causing the pain under control rather than mask the pain with narcotics. The only muscle relaxant I've ever taken is Flexaril and it worked well for me.
I have lupus and fibro, and I'm up at 5:30 every morning, out of the house by 7:15. I work and try to have as normal of a life as possible. Have faith, it can be done. (Not every day is easy - I do have rough ones). If my doctor had a dollar for every time I told him "I need to be functional!" he'd be rich. Lol. I just expect to able to function, and I expect my doc to help make that happen.
Good luck, hope they can get your meds figured out and you start feeling better. :)
Hello Sarah
First you need to remember that we are not doctors nor are we medical professionals. You must discusthis with your doctor. I take 60 mg of Cymbalta per day. The other meds I have not used.
Gentle hugs
Rachel
Hello Sarah,
It sounds like you are dealing with alot. Well my meds is Amitriptiline HCL 10 mg., Savella 50 mg., Wellbutrin 200 mg., Clonazapam 0.5 mg., Tizanidine 2 mg.(muscle relaxer) and Tramadol 50 mg. 1 tablet 2-3 times a day.as needed and I take 2 tablets at bedtime. My pain is always worse at bedtime. I have tried so many meds within the last 10-12 years. And these seem like they work best for me for the fibro. I am on other meds to for other problems also. You just need to keep trying different meds to find the right one for your body. The Savella helped alot...I wish I could take the full dose of 100 mg. but it puts my HR up to 165 bpm. I do take extra strength tylenol if my pain is not to bad so I do not have to take a tramadol. But in the winter that never happens since I live in PA. I hope this forum helped you. And it seems like more and more people are getting this terrible disease. I wish you luck and may God bless you and help you find the right meds for you. Hugs to you!
Nancy
Parafon forte is the best one I have found, but you do have to keep an eye on liver enzymes while taking this muscle relaxer.
I was taken off Ultram because there's a risk of seratonin syndrome when it's combined with Cymbalta. They could increase your Cymbalta. I also take Xanaflex which works well for me but only at night. Supplements may help - try Curicumin (Tumeric), Ginger, Boswellia Serrata. All have no side effects and are natural anti-inflammatories and Curicumin is helpful with the pain. Best wishes!
Nancy
Hi Sarah, Love your name. I hope you are proud of yourself for being sober, you really should be...Drug and alcoholism is a disease. My sis is 10yrs sober and brother is 21/2yrs sober and I am so grateful and happy for both. First I am confused about you being diagnosed w/Lupus than another Dr. saying no. There is a test for Lupus. I just had this because I showed several signs for it and my sis has it, but I am very lucky not to have it. I am on Cymbalta 120mg, and Ultram aka Tramadol 200mg total per day along with my other meds. My doc just increased the Ultram, I can take 50mg every 6 hrs. I still havent gotten the right dose of some meds but are working on it. Hang in there, tell your Dr. how you are feeling and what is working and you will get it right soon. Gentle Hugs coming your way, Robin
Robin, do you know what test that was? I've never heard of one specific blood test to diagnose lupus, and the University of Michigan Lupus Clinic rheumatologists don't use it. I'm wondering if there is something brand new?
HI Sarah - Welcome to the site! I joined about 3 weeks ago, and it's the best thing you could do for yourself. I still haven't found a muscle relaxer that works yet. I have been on several of them over the years, and nothing has really helped my spasms in my back and hips. Keep checking back with us, as we are always talking about ways to make us feel more comfortable. I have gotten quite a bit of information and suggestions with this group that I will bring up to my doctor. Having Fibro is really challenging. But my signing up with these wonderful people in the group, I am so much better mentally, because I felt such a sense of isolation for along time, before I joined. To know that others have our illness, is a real eye opener for me. I see so much of myself on the discussion board. Take care of yourself , Sarah, and if you need to 'vent' - as I have done on this board, do so! Gentle hugs!! Laurie
Nyucenta
Hi Sarah, I am on norcos too, but also take robaxin (muscle relaxors) which actually seem to help, I was taking Savella but I had some major side effects so I stopped taking it, plus Savella gave me a really bad sick stomach unless I took it on a very filling meal. I also take predisone 5mg/day and motrin 800mg twice/day.....it is not 100% pain free but somedays it helps quite a bit. Hope I could help and goodluck. I have been on the pain killers for over 2 yrs and I am 100% sure I am dependent on them but without them I can bearly get out of bed. I sympathize, it is always a trade-off, most drugs that work carry some kind of risk of dependency and side effects. Flexeril doesn't work on me. Maybe try the robaxin...good luck
Wendy please be very careful with the motrin. i just found out my stomach is lined with ulcers from taking to much motrin and aleve throught the years. i didnt take more than the recomened dose but i was taking on or the other almost every day for the fibro pain. these ulcers hurt like u wouldnt believe. they r getting better now with threatment. please be careful.
hi i thought i would answer for Robin. i dont know the exact name of the blood test but i know it measures your ANA its what shows the anount of imflamation in your body. i just had the test done but i havent been back to get the results yet. u should of had the test before ever getting a true dx of lupus. u cant argue with a blood test.
I think it's the A.N.A but Ill double check with my hubby. I have been really forgetful lately oops lol. If different I'll let you know :)
Thanks Stephanie, Thats what it is, xoxo