Let's Welcome Patty-O

Hi, Patty, and welcome!  Golly, I live in the Tampa Bay area and absolutely love it.  I'm far better with my pain than I ever was up north in the cold and snow.  The summers in Florida with the humidity and rains in the afternoons are hard but they only last about three months.  Washington State has a lot of rain and cold rain from what I understand.

 

The reason I'm telling you this is you might have something more than just fibro going on.  I have had fibro for 25 years and recently found out I have a rheumatic illness that has really been causing a lot of the intense pain back and neck for me.  I have used ibuprofen for years to keep the pain under control but fibro isn't an inflammatory illness and I always did wonder about that.  I am still on ibuprofen and was put on Robaxin, which is a muscle relaxer.  I also take malic acid/magnesium supplements, vitamin D3, and an alternative pain medication called Curamin and am doing so much better.  I hope you find what helps you. 

 

I was on Tramadol and Vicodin and neither of these touched the pain.  But ibuprofen and Robaxin have me back on my feet.  You just need to find the right combination of things to get the pain under control.  There are many good doctors here.  You just need to do your homework and also ask if they treat fibro patients before you ever make an appointment.  If you live in the Tampa Bay area, just email me and I'll tell you who I see.  My doctors are excellent.  My Internist is affiliated with University of South Florida Medical School and my rheumy is absolutely fantastic! 

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  All the links are good so do read them.  Knowledge is power.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine 

Hi Patty,

Welcome to the fibromyalgia forum. I am so glad that you have joined us, but also very sorry for the reason.

I am sorry that the doctor wants you off of dilaudid. Hydromorphone is a very strong narcotic, and I can only imagine what it is like to have to go off of it. But maybe this way you can get your tolerance down and put off taking the dilaudid until later in life. I am just concerned because there isn't anything much stronger than the dilaudid. If you build a tolerance, you have no where to go. But if it was working for you as it sounds like it was, maybe then we go "if it aint broke, don't fix it". I am sorry you are going through this. I hope that the doc is going slow with the decrease.

I take 7.5 oxycodone, but I don't have all the problems that you have. I though still have pain. But I figure that I always will. But that is me... I hope that your move helps you and helps you to find a doctor that will work with you. Do keep us posted, we all really do care. Are you able to walk a little? If you can, do walk as much as you can. I go out everyday and it really helps. I don't go a far ways, but the little bit that I do go, does help me and increases my energy.

I have a question... What is a DAT test? I was just curious.

Keep us posted on how you are doing. I truly hope that you feel better soon.

Hugs, Karen

I am happy to go off the Dilaudid as I understand the addictive nature of this narcotic, however, with Spinal Stenosis, loss of lordosis, scholiosis, hernias, annular tear, both knees in need of repair, bursitis in shoulders, ankles shot, Fibro and muscle spasms that seem to cause the tremors and migraines, there needs to be a substitute. I should have started at the beginning, I was born with the bottom of my left leg backwards and was never supposed to be able to walk. My parents couldn't afford the surgery and my mom says she used to twist my leg whenever she gave me my bottle, so no surprise that 16 years ago I had knee surgery. The doc thought he was going to move my knee cap, but reshaped my knee instead and said I would need surgery every 5 to 10 years. I also worked with A.I. duPont Pediatric Orthopedic hospital from age 5 to 13 for scoliosis and a pelvic tilt. I did pt and wore a lift on my shoes, at the same time I took ballet, tap, gymnastics, swimming and field hockey. When I was first dx around 20 years ago, I kept up my hyper, multitasking life and rarely took meds although I had a standing scrip. Then we made a move about 6 years ago and it just trashed my back, taking heavy boxes upstairs and the constant bending over of unpacking, etc. At the time I was married to a worthless, lying, cheating, stealing, piece of work and I gave up my great job, insurance and all for his promotion/transfer. He cut me no slack and had fits if dinner wasn't on the table when he'd finally show up and I later found that he had been cheating all along and had passed along some nasty things which I believe contributed to my current state. According to my bloodwork as recommended by USF, I had Epstein Barr virus and when I think, it was when he and I hooked up, that's when all the dx's became unbearable. Apparently, I had several diseases that were left untreated for years and it seems reasonable to assume that his behavior is responsilble for my present state. While I was treated after I gave him the boot when everything came to light, it was too late. My non-medical opinion is that all these infections attacked my already damaged body and is responsible for my current and future state. I use a walker and am expected to never be able to drive or walk unassisted. I have worked hard at pt but can no longer tolerate it without any pain relief. Walking and standing are the worst, so for the time being I am taking it easy until I get moved and to new docs and treatment and hopefully some sort of meds that will allow me to get back to my active life. BTW, Tramadol made me sick as a dog, as do all NSAIDS. My only issue now is, HOW DO WE MOVE? I really appreciate all the input and well wishes, right back atcha'll. I do appreciate my doc's motives for taking me off of Dilaudid, but I also believe there should be some other pain reliever in the meantiime. I was told to get pain counseling, and while I don't dismiss this, it in no way magically makes the pain disappear which will only progress as my spine continues to compress. I'm already half an inch shorter and am only 48. While the Doctors say the worst thing you can do is Google and self diagnose, what else can you do but try as they aren't? But I will not let these things define my life, I will get past these issues and get back to some semblance of a life. Once I'm back on pain relief, I will be able to exercise and shed the 100 pounds I gained in the past 6 years since all of this started. Oh, and I don't know what a DAT test is, this was recommended by the M.J. Fox people. And I also take many vitamin supplements, eat vegetarian and use herbs and spices with beneficial properties.
Have a fun, funky Sunday!

Thanks so much Karen, but no pity for me ... I always remind myself that things could be so much worse. I think one of the things that is contributing to my level of pain now is getting hit by a car while walking across the highway. They said some things might not show up until weeks or months after the hit and I believe they were right. I also would like more investigation into the "unspecified white dot" on my brain CT, that showed up consistently after the accident, but according to the neurologists, nothing to worry about. Yet, I have a whole new set/style of headaches and the tremors.

On a positive note, for Fibro sufferers, one of my best pain relievers is Arnica, in gel during leg cramping and at night the pills help me sleep.

I did read through the Trigger Points article which is fascinating and also the Chronic Myofascial Pain documentation, have printed them out and intend to bring them to my doc's who keep insisting depression is my biggest contributing factor. Even though my shrink and I agreed years ago that it is more frustration and an appropriate response level of depression for my situation. I also am the single parent of a special needs adult child. If they looked further, they would see I don't fit the depression model - I decorate for the holidays and any tears are from physical pain, regardless of the pain, I get out there and feed the birds and bunnies and while not currently painting, I'm keeping a notebook of ideas and sketches.

I will dwell on this no longer and focus on my move, but I will continue to read the articles to be better informed when I see my docs.

 Too many to list. On a side note, I call the Vitamin place I order from and ask what herbs, etc they have for certain types of pain or disorders. I was told a long time ago by my PCP that synthetic vitamins don't do anything, you must eat the mineral/nutrient as well as supplement it with a natural vitamin.