Is this for real??? For ever???

Discussion in 'Fibromyalgia Main Forum' started by ckatgo, Aug 26, 2005.

  1. ckatgo

    ckatgo New Member

    Hi there, I am 39 and have been diagnosed with FMS and DD and sprained sacroiliac (on both sides). I have been through different doctors, none whom which care or have enough time to help me out with the "Other" things that have been happening to me. Fro some reason I have not had and can't seem to get a Cat Scan or a MRI. I really think the sprained part of me is causing most of this pain. I have tried chiro, massage, physio, accupuncture, amd last but not least...mind over matter! I am a complete head case lately, I guess I am depressed, all I am taking is Diclofenac, it is not helping at all. I know there are hundreds of questions like mine on this forum but I am just at the beginning of this new journey of my life and at this time I am overwhelmed. I have a Dr.appt coming up and I want to start from scratch with this new guy. Any suggestions on what to insist or questions I should be asking, or maybe perscriptions that have worked for you?

    Thanks and have a great day!
  2. msthang

    msthang New Member

    i am just at the begining of this extremly long and painful ride myself. but have had the advatage of talking with several who have gone thru it for years. let me tell u that does really help. u should definetly try the support room for fm from this site if u haven't already. sometimes muscle relaxers can help to take away the edge i take skelaxin. also you should try vitamins such as glucosamine, vitamin c, and b complex. there are others i am sure but these are what i take. however i am not sure what the DD is? have you been to a rheumatologist? they generally can do more than a reg dr. it will take alot of trial and error so keep your head up and be strong. the best thing is to have support. that will help u when none of the meds will. and thats a fact.
    the depression is normal in these cases. i mean all the pain, who wouldnt be depressed. and you're not a head case you just have fibro fog. just give it time. remember trial and error.
  3. Lurlasgirl

    Lurlasgirl New Member

    I'm afraid it IS real, and it IS forever - at least for now.

    BUT - there is hope for improvement, and there are many things that can be done.

    I've had FM for more than 20 years, and I have to tell you that I am MUCH better today than when I was first diagnosed! Throught he years, I've been on different medications for pain and sleep, and different antidepressants, and right now, I'm able to manage without any prescription medications whatsoever.

    Even with the meds, the most dramatic improvement I've personally seen in the course of my condition came when I put myself on a very limited yeast elimination diet.

    I don't know if this is actually because I had an overgrowth of candida, or if I'm sensitive to some of the things I removed from my diet at that time. I DO know that when I eat things that contain white flour (breads, cakes, pastas, etc) and/or if I eat much sugary stuff I feel much worse.

    I feel much better when I limit the carbohydrates in my diet to vegetables, with brown rice, oatmeal, potatoes with skins on and sweet potatoes for starchy things. I can eat some things made with corn meal or oat flour without having many problems.

    I know this won't work for everyone, but it does for me. And if I'm able to walk several times a week, that also greatly improves how I feel. It's just that its been so HOT and humid here lately that being outside debilitates me ...

    Anyway - Please don't feel discouraged. There ARE things that can be done to help!

  4. ckatgo

    ckatgo New Member

    Thank you so much for the support and information. I think I have found my new place to learn and inquire with. I will stick in here with all of you and when I get new information I will share it as well.

    Take care,

    Kathleen... AKA... ckatgo
  5. rileyearl

    rileyearl New Member

    Like you, I'm fairly new to this diagnosis and this website. In just the couple of weeks I've been reading posts here, I've learned so much. I was in shock too, still am really, about finding myself with a weird sickness that won't kill me, but will cause me pain and trouble for the rest of my life. After reading about some people's experiences with the Fibromyalgia and Fatigue Centers around the country (FFC), I've decided to give that a try first. My family doctor has been somewhat helpful, but unwilling to give me anything to really help with the pain or sleeplessness. I've had 4 lectures about getting addicted to narcotics. For crying out loud. I'm 52, do the math, if I was going to have problems with drugs, it would have happened 30+ years ago. I guess he's just spouting what he's heard in the medical community, however outdated that may be.

    I wish you well. Your healthcare is definitely something you will need to steer yourself. There are lots of great books out there to get you started. Be careful about propping the books up on pillows to read or your back and shoulders will give you a hard time the next day. In spite of learning that the hard way (it felt like I'd been painting ceilings all day), I had to laugh at how silly it sounded. When I think of what I used to do, well, better not go there. One of the books I really got a lot from was about the first year after diagnosis. It's written by a woman who has FMS herself and works for a doctor who treats FMS patients. I ordered it from Amazon, but I'm sure you can find it about anywhere.

    So, welcome! I look forward to your posts and hearing that you've figured out how to ease the pain.


  6. elsa

    elsa New Member

    We have all been at our wit's end , so no need to apologize. I'm sorry you are hurting so badly. Things can get better though.

    I am really glad you have found a new doctor. Finding one that believes in CFS/FM is the first hurdle. Ask him for a sleep study ( if you haven't already had one done). Sleep doesn't happen for us, and you and your doctor can help it greatly. Lunesta, Xyrem, ambien and natural supplements are out there for your particular sleep problem.

    Ask him for pain medication. Print out the recent post about the study done on FM patients and quality of life with pain medication. I specifically asked for tramadol. The study was done with ultracet ( which is tramadol with tylenol added.) I take 2 50mgs every 6 hours. Also ask for a rx for muscle relaxers. I take very small doses of flexeril from time to time. Most docs try to give you AD's for pain ..... they don't control pain for the majority of people.

    If you are like me, you're interested in any supplements you can take to help heal your body ... my goal is to get so far along in my remission, I won't need my rx's. By getting a sleep study and the proper sleep med for you and taking pain medications, you'll give yourself time to research through all the information that's available to you.

    By getting good sleep and either breaking the pain cycle, or at least staying ahead of the pain, then you'll have at least a chance to feel decently while you decide on your treatment plan for the long haul.

    I hope this made some kind of sense to you. It sounded brilliant to me in my own mind ... but reading it through afterwords ... it's kind of questionable !! LOL

    Hope it helped some and good luck at your appointment ......