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PMR used the "F" word, family thinks I'm crazy...

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:27 AM in Fibromyalgia
Hi all! I'm back to the boards, I've posted in the past during my back surgeries and and chronic pain and depression eras...

Anyway, I am 9 weeks post-op having my hardware removed from L4-L5. I still have massive leg nerve pain, doc has increased my neorontin to 2700 mg. They say, though, that there is nothing on the nerve, and I should heal.

Ever since my first back surgery, I've experienced wide-spread pain. I've even gone to the ER with my first migraine and severe tension headache that they gave me valium for and did a CT scan of my brain that comes back fine. I've had every area MRI you can think of, and everything comes back normal, with mild tendonitis or birsitis (except for my back, of course). I now wake up in the middle of the night with a wierd aching in my knee that I can't explain. It keeps me up all night so I don't sleep, no matter how many drugs I take.

I have numbness in both hands and feet, pain in my shoulders, front and blades, and if you touch my back near the area of my SI joint, but a little more inside and higher, I will scream bloody murder. My face gets red all the time like a rash, but Lupus tests came back negative (mom has Lupus). That part keeps getting worse, and happening more. My family thinks I'm tanning and getting sunburned. But it comes and goes whenever it wants.

I can't find a good rhemy to save my life, and my neorologist just keeps giving me more drugs. My orthopedic surgeon gives me trigger point shots that last for about two weeks, and keeps sending me to PT. My spine surgeon thinks I'm nuts.

Then, for the first time, my PMR doctor suggested I might have Fibro. He called it a "garbage can diagnosis," but that i might experience pain differently than most. We are trying to switch to Lyrica from Neorontin, but my insurance company is giving me trouble.

Sorry so long, I thank anybody who read this whole thing. I am at a total loss of what to do next. I am supposed to go back to work in four weeks to a VERY demanding job that I don't think I can do. I am looking for some support, sympathy and answers. Do I have the classic symptoms? Seems like it. My mom is being horrible about this. She says "Oh, you are just always in pain." My husband is tired of me being sick and tierd and really doesn't care about the diagnosis.

Thanks again.



  • :) hi! :H you have a lot on your plate and even more coming up with work. perhaps the stress is causing you the headaches. ~X( i have insomnia myself and have learned to get by with naps in the daytime and maybe a few hours at night. i try and stay rested that way. I) i take alot of vitamins and supplements as well. i find i feel much stronger inside as well as thicker hair, strong nails, and i rarely get ill. have you tried melatonin and magnesium together for sleep? Valerian works well too. try them, you might get a night's sleep out of them. Valerian is much like Valium and can be used for rest as well as anxiety or stress. of course speak to your doctor or even your pharmacist about this. i also want to suggest medical marijuana. :? it works so well for many of the problems you are having. it is legal in many states and may be that natural "supplement" you can use. i am sorry you are lacking support at home. :''( try leaning on us for awhile and maybe that break will turn your families eyes around to you. please keep gathering your information and i hope you find a treatment plan you can work with soon. =D> good luck! Jenny :)
  • Thanks Jenny. After reading my post, I sound like a big whinny baby. I really blew up! I will take some of your advise into consideration. Medical marijuana is legal in Michigan now, and it has crossed my mind. I am going to try fish oil and glucosomine/controitin (sp) which were recommended to me today. My insurance approved the Lyrica, I took my first dose today, so hopefully things will look up!
  • mommyoftwo, you sounded like a woman who was alittle tired is all! we are here for you no matter the problem! that is great you got the Lyrica!! =D> i take 300mg daily. it has been the biggest help for my sciatica ever. <:P please be patient with some of the side effects. sleepiness, feeling alittle loopy, vision problems and weight gain will all go away as you adjust to the medication. your doctor will most likely adjust your dosage slowly so your body will get used to the med. you may not even have any side effects at all!! good luck as you try the Lyrica and i do hope it helps you!! i use the glucosimine daily in a 3 pack.! it can't hurt! Jenny :)
  • Hi!
    First of all, yes, classic complaints of Fibro. I am so sorry to hear that. Being diagnosed myself 20 years ago I can certainly give you some options (of course, these are all my opinions and suggestions as I am NOT a doctor).
    The first thing I would recommend is to set up and appt with a Rheumotologist asap. It has been my experience over the years that most Ortho's do not believe that Fibro is a legitimate disease. It becomes one frustrating roller coaster ride.
    I have found that the only minimal relief I can get are massages from a PT/Massage Therapist that has studied Fibro Massage. ( Most have a chart in their rooms that will show you where all the areas that pain are "normally" related to. It is so good on one hand to see visually that these pains are infact real and confirmed through intense studies.

    One thing I learned many years ago that Fibro/Chronic Pain is Incurable but Remittable. I have always hated hearing that. There is nothing worse than having a disease that is "blind to the eye" and the scrutiny that comes with it.

    Having a positive support system is one of the most important thing. It is so hard for others to understand what you are going thru. I suggest you copy and paste this, print out and let your Mom read this.

    Diet is another very important factor along with regular exercise. Swimming has been to be one of the best things for Fibro..Less impact on the body and allows for much easier stretching.. Funny, though, if you read my post from today as I sit here in excrutiating pain...The least I can do is help a fellow Fibro suffer (it sure sounds to be like that is what you have but always better to be properly diagnosed from a Rheumotologist.

    Best of luck. There are a lot of great support groups for Fibro out of most hospitals. There are free and very helpful/

    Mom,,,best you can do is understand, be loving and compassionate. trust me..It's the MOST horrible pain a person can face. The weather has a lot to do with it. A LOT. Rain, Humidity, Barometric Pressure, Dampness, you name it.. We are not fakers....We are Fibro sufferers. We are not faking...Period...

    Good Luck Sweetie,
    Vicky O'Donnell
    46, Illinois
    Diagnosed Sep 1989
    3 Failed back surgeries
    PLIF Fusion
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