Please help me and give me advice please..all who view please give advice??

I am now 22 yrs old and have been with you guys since i was 18 yrs old and had my surgery. This past year has been a NIGHTMARE for me but it should have been wonderful considering i had a baby. My fibromyalgia kicked in , in high gear. I am rittled with so much pain i cry all the time. I am only human. I feel as if i am getting worse by the month. I don't know what to do. My body pounds with pain. I have a team of doctors, a family dr, a pain dr, a rheumatologist, and a chiropractor. Soon to add a psychotherapist and physical therapy.  I do every dance , prayer, jig and everything else my doctors tell me to do. I am faithful to my plans. They keep prescribing tramadol and darvocet. I refuse to pick them up from the pharmacy, they don't help me anymore they don't touch my pain anymore. I apologize to my pain dr that the meds don't work but he just keeps giving them to me. He now questions my mental status...Are u kidding me??? I feel as if i am being tortured. My body hurts so badly. I take Lyrica and Midrin too. I tried the Savella and i couldn't pass gas or stool the whole time i was on it so i stopped. At one point my dr gave me an extended release drug...um HELLO???? My family dr and the rheumatologist don't get why even with maalox to coat my pouch an infants dose of Ibprofen makes my pouch hurt and pinch for 48hrs. I know that my crying often is why they want me to work with the psychotherapist but i tell the therapist i cry because the pain is so severe. Our bodies are different then the regular people but the  dr's don't get that. They don't get the severe fibro pain. I feel bruised all over. I am stiff. I walk with a limp, i get lost in public , my hands feel arthritic and the dr's do throw lots of tylenol and sedatives at me...HELLO..?? I have a baby. I don't know what to do they would rather send me around to a bunch of dr's and keep making me do dances, jigs, and prayers, and i do. I do all they ask me to. Then they come up with somethign else for me to do then that fails. What can i do? Where can i go? Who can i see? I am tired? I am rittled with pain. I am a 22yr old woman who can only bathe every 7-9 days because its so difficult and takes so much out of me. I do go into my dr's appts now and just burst into tears everytime. I know i look crazy or like a junkie but at this point i am in so much pain and i know they are going to come up with so crazy new thing to avoid helping me. What can i do? Who can i see???? HELP...I am in so much pain....PLEASE????
Please answer my prayers ladies...help me...what do i do. I am starting the Fibro support group too but i am just rittled with pain.

I'm sorry you are in such pain.

Try to remember that your baby needs you and pray for help in the relief to deal with the pain so you can be a good mom and focus on her, hard I know but not impossible.

And I will keep you in my prayers as well.

Liz

Have you tried narcotic pain meds? They are really the only thing that help me. I know people don't like taking them and tend to feel like a junkie but the way I look at it is: if I had diabetes would I refuse insulin even tho it helped? I look at narcotics the same way, they are what works so I take them. If I don't hurt alot I don't take them but when I do hurt they are a huge help.  I can drive and go places while using them with no problem, I always wait a couple of days when I first try them to make sure I can function and some times it takes a few days for your body to get used to. Not totally pain free but able to get around. That is something else that maybe seeing a therapist would help you with  that you are going to be in some pain always so you have to make friends with that pain. Learn what makes it worse and what helps. Learn how to do relaxation techniques to ease the stress. Being in pain all the time just makes us in a state of super stress all the time. You have to learn to live with and work with the pain. This is hard for someone your age because you want to go live life like eveyone else. Focus on your little one and relax with her. Keep working with your docs or maybe check the internet and see if there are any fibro specific clinics anywhere near you. It takes time to come up with a plan that will work for you, lots of trial and error. I wish you the very best and pray that you will get some help with this. God bless!

I feel like i have tried EVERYTHING but narcotic pain meds.  I do comply with treatment. Because of my age they don't want to and WON'T prescribe narcotic pain relievers for my fibromyalgia. I feel like the tramadol and darvocet and midrin and lyrica to name a few are wrecking my pouch and i open them or cut the pills because i can't swallow them. I try really hard but we don't absorb the meds the same as others so our treatment plans should be different. I don't like taking all this tylenol. I am scared of what its doing to my liver. I don't like taking so many pills a day. I really wish they could find something else so i wouldn't have to take so much that doesn't even help. I just want to be able to function, i am not seeking any sort of med like they think so. I take what they tell me will help.  What can i do. I feel like crap and all these drugs are sedatives they give me. They just keep telling me to go see another kind of specialist. Yesterday i was told neurologist too.  My one dr told me cymbalta or savella and lyrica together are what they give patients with fibro. But what do i do when they don't help or i have bad side effects? They have no answers other then don't take it. I am sore and tired and throbbing. I want a dr to just talk to me and hear me out. I hate all these meds that don't help me. They wreck the pouch. THEY ARE ROTTING MY BELLY!!!

Have you gone to a pain clinic? They specialize in what you are going thru...just make sure you take the info on your surgery with you so you can help your pain doctor understand how your pouch works. You may need narcotics and to need them is not necessarily a bad thing when under the care of the right doctor.

Liz

Have you tried pain patches? I have a friend with fibro and she uses narcotic pain patches and has been since she was 23. I use pills (narcotics) but I will see how it goes since I have been banded. If I have trouble with the pills I will ask for patches. I regularly use lidoderm (sp?) patches for particularly sore areas. I love them for my shoulders because I have two 3-year-olds that I NEED to be able to lift. I cannot function and do not want to function if I cannot hold my little ones and interact with them. I had to switch doctors a couple times to find a NP that was understanding and PROactive about my condition and not patronizing. I have had a plan that has been working for me for a year. Another wonderful med that helps me is Xanax. I do not have an anxiety condition; however, when the pain gets severe I start panicking that I will not be able to relieve the pain and I feel trapped by the pain whi*****ites panic and stress which only increases my pain. So, while I am waiting for the pain meds to kick in I take a xanax and try to relax. Also, I am sure that you have thought of this, but I got a new mattress with pillowtop and stacked a featherbed on top of it. I am sleeping better because I don't have to roll over to relieve a pressure point every 20 minutes. My husband complains because it is too soft, but I told him his back ache (which he really only gets about once a week) is nothing in comparison to my fibro pain and that it is best for our children (I'm a stay at home mom) for me to get good rest and be able to be the mommy they need and deserve.

I really hope this helps you in some way. I'm so sorry you are going through this and I know how you feel. It took me forever to find a doctor that would listen to me and pay attention to what I was saying. I was frustrated and actually wondering what the point in being alive was if I couldn't LIVE. But I knew that God would bring me through this. I also looked to my children and husband for motivation to hang in there. I still have to force myself to move first thing in the morning. I hurt until I get some meds on board, but if I don't grit through the pain (even if I'm in tears) and get moving I will lay in bed all day. Inactivity is the devil for fibro. If you don't use it you will lose it!

You can do this. I wish all the luck and will be praying for you.

My heart goes out to you and I can relate to so much what you are saying.  Don't give up!  I was dx'd with fibro at the University of California San Francisco, when I was 24, which was 25 years ago.  I, too, have tried the gamut of different types of treatment, probably the greatest benefit has been to find practioners within a teaching hospital.  I now live outside of Portland, Oregon, and both work and get my medical care from Oregon Health Sciences University.  Through the rheumatology clinic there, I have found a fibro team that has worked with me the past year to try and find something that will work more than temporarily for me.  After going thru the Neurontin, Lyrica, Tramadol, Cymbalta at different periods for years, it became clear I was going to have to move to narcotics to get some pain relief in the day time to be able to function, as all of these gave out at some point.  I am not an addict and have never taken any of these drugs to get high - I 've taken them to improve my function to live without so much pain and fatigue. (As could be said about all fibro sufferers.)  The last med I tried after a short trial of Zyrem , (had to get off of it after 2 nights due to side effects) was fentanyl patches, which I was on for the past two months.  I have to say, the first month was fantastic.  My pain level was at a 2-3 instead of a 7-8., something I had never experienced for 25 years.  With the patch, of course, it bypasses the stomach and I didn't have to worry about absorption.  Unfortunately, I had a hard time finding the right dosage after a month and it was making me too fatigued to work.  After just over a month, I knew I had to get off of them.  I have had luck at night sleeping better, with the combination of 1 trazadone, 1 clonazapine, and melatonin.  Swimming in a warm pool several times a weeks is my saving grace, as is massage.  Other things I have tried have been accupunture, chiropractic, and craniosacral therapy, all of those not producing any help.  I have found recently a local chapter of a FM/CFS group that meets regularly. (Found thru Meetups.com and type in what kind of group you're looking for). Helpful to be with those who not only understand, but can also share what is working for them.  We had a speaker from the university's pain management group speak a few weeks ago.  She was having luck with Naltrexone on several of her patients.  A collegue of hers was having luck with tapazadol on his patients.  The specialist that I'm waiting to see uses suboxone and that will probably be the direction I will head in if he thinks it's best for me.  Everyone is so different and it is all such a trial and error thing.  My practioner was disappointed I had problems with the fentanyl, as that is something that works for many of her other patients.  I consider myself lucky to have found this fibro group, as I came to find out that most of the university hospital's pain management clinic won't even prescribe pain meds to fibromyalgia patients.  If they could live in my body for one day, is what I say!

I sit here writing this in almost the most pain I've been in my life, getting off of the fentanyl and waiting to see someone else within the rheum group who's booked out for another 2 weeks. (I've already waited almost a month to see him).  I can't work like this - and have asked to apply for short term disability today, at least until I can see this specialist and get back to a functional place.  It makes me sad, not to mention very scared as to what the future holds if I can't obtain some help.  I've got 20 years invested working for the hospital and don't want to lose my job, house, etc.

There's gotta be a rainbow in here somewhere though - for me, it's  been the weightloss -I have lost nearly 170 lbs. and goal must be comin close under all this skin.   In the past, I used food to blunt the pain of the fibro and won't do that anymore.  For that, I have to be grateful every day.

I responded the other day, but i guess it didn't go through.  Long story short.  I use the Duragesic Fentanyl patch, and change it every 72 hrs.  I put it were my bra straps go in the front, so I can wear tank tops or I put them on my hip, towards by bum.  They stick very well there.  I also use Norco as a breakthrough med 3x daily when needed.  So for the most part, the patch helps 99% of the pain.  I have a hard time of course in the winter.  But we all do.  Some probably worse than others, I am in CA.  It gets cold here but not like back east.  Anyway, ask your doctor if you can try the patch.  It doesn't make you loopy or not able to function.  I don't know it is on, I just know when it runs out. 72 hrs later.  It is a very successful option for me.  I hope you are able to get it.  I have Kaiser and I pay $10 for a month supply and $10 for my Norco.  Unfortunely, we do narcotics to help ease the pain.  The Cymbalta and others take the edge off somewhat, but the narc. seem to really help.  I think my mom had this condition too, I remember for her she would take a Motrin and would still be hurting then she would take a Vicodin and would be able to function better.  So, if you have trying almost everything, ask to try the Fentanyl patch.  

Dear figure0156,

I have had success with Cymbalta. Te thing is though, it has to be taken as prescribed or it is not effective like it can be. If medication is missed, the pain comes back.

Hot showers work wonders.

Heat and vibration work well also. I have one on my chair and my bed, and it makes the world of difference.

I have a rheumatologist who treats me for fibromyalgia. he knew right away what it was, took me off of arthritis medication and placed me on Cymbalta, and it got my pain in check.

I am the diagnosed type that has severe pain all the time, and this medication has worked well for me.

One drawback, i do dream but i cannot trade bad dreams for much less pain.

Hope this helps.

I had a few Dr's refuse to help me when I was 22 as well. Some just don't get the cycle of chronic pain. Pain doesn't discriminate, it can hit you at any age, young or old. The first pain Dr. I went to told me he wouldn't help me ruin my life and that he thought I was to young and to fat to be on pain meds. So I went years with no relief, no help, it seemed like no one would believe me. It took my therapist writing a letter to my primary at the time to even get vicodin. I finally found a good pain Dr. last year after 7 years of repeated ER visits and being labeled a pill chaser. He put me on the fentanyl patch and hydrocodone for breakthrough pain.
I'm so sorry you have to deal with this pain, it's not something I wish on anyone and I know what you're going through. I have had people tell me that I should be used to the pain by now since it's been so long. You don't ever get used to pain like this!