I need some prayer.....got some bad news on my body today

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by sunflowergirl, Feb 27, 2013.

  1. sunflowergirl

    sunflowergirl Active Member

    Two years ago I had an MRI done on my neck, along with xrays of my low back. This MRI report was sent to my doctor AND the expert rheumatologist I was seeing. (this rheumatologist also teaches at USC Riverside) Neither one said diddily about the serious condition I had.....cervical stenosis and lumbar stenosis......or advised me to seek further help with the proper expert.

    After doing a lot of internet research, I saw an orthopedic surgeon today to talk with him. He took more xrays of my neck (it's changed from two years ago) and next week I go for another MRI on my neck, then back to him, then depending......to see a spine specialist and possibly neck surgery.

    ALL this time doctors have been telling me it's FM....all I needed was cymbalta or lyrica, some stretching and exercises and learning to let go of stress, etc. I'm soooooo angry at the bad medical care I've been receiving. I've done a lot of crying over this. What I've read is that if not treated you could be paralyzed.

    I'm wondering how many more of you are going thru what I am, FM? When in fact you have something more serious going on. You need to an active role in your medical care, do all the research, and don't rely on your doctor.
  2. mbofov

    mbofov Active Member

    I am so sorry for the shoddy medical care you've received. I agree 100% that we have to be active in our medical care. We can't rely on our doctors. We have to read our lab work and educate ourselves to what it means. We have to educate ourselves about any drugs that are recommended, and side effects, and natural alternatives. We have to do our own research and if necessary educate our doctors.

    I'm sorry you've gotten bad news today and hope your new doctor will be able to help you - will keep you in my prayers -

    Mary
  3. luigi21

    luigi21 Member

    You're absolutely right that, especially cervical stenosis is now being proved could be the cause of or partake in symptoms of fibromyalgia. We had an american rheumatogist bring thisvinfo to england so years ago. Sometimes the spinal stenosis can get missed because mris need to be taken in flexion and extension view as the stenosis will not show in normal view. The pressure on the spinal cord can cause symptoms similar to fibro so thete are people diagnosed with fibro that dont have it or whos symptoms are exaberated due to the stenosis. Ive wanted xrays in extension and flexion for along time because i have suffered mechanical problems with my neck due to mechab
    nical problems, scoliosis and ive had two whiplash injuries so i am a prime candidate, despite that my rheumy said that they cannot finance the mri's at this point which really riles me. Yes some off us could be walking around with spinal stenosis not fibro, esp if youve had neck injuries.

    Id jump at the chance i think even though i know there are risks to how they deal with spinal stenosis. Feel free to research this information it has been known for some time.

    And thanks for your post sunflower i hope what ever decision you make goes well for you.
  4. sunflowergirl

    sunflowergirl Active Member

    If xrays have been taken of your neck and lower spine it will show if you have spinal stenosis, spondylosis or other things. MRIs go more into detail. If xrays haven't been taken I would demand them. If this doctor won't comply find another who will.......or here's a thought......go to an ER.

    I've had some auto accidents, the first when I was 23 and that xray showed a reversal in the lordotic curve. After all these years I think that may have been congentital problem which might have exaserbated all my troubles.

    I see all the people who have read my post and yet I find it strange that no one other than you has come forward regarding the stenosis.

    Looking back over the years of "FM treatment" and nothing helped and now what I've researched on, I think if I had known this years ago I would be in a better position.



    I DID A RESEARCH ON CERVICAL STENOSIS AND FIBROMYALGIA AND CAME UP WITH THIS MOST INTERESTING FM SITE:

    http://www.nfra.net/Stenos1.htm[This Message was Edited on 03/01/2013]
  5. ... Sorry I'm just now seeing your post... I haven't been on the board for a few days because I haven't been doing well due to sleep issues and having to be on Nyquil for something like 2 weeks now, which is helping me sleep, but exacerbating my ME/CFS...

    I am so sorry to hear this, Sunflowergirl, and know how upsetting this must be for you... While I'm not familiar with spinal stenosis, I have had back and neck problems for many years... And I "accidentally" found out from an MRI to check for herniated discs about 3 years ago that I have something called "chiari malformation" which causes a crowding of the the nerves and spinal cord coming from the brain/scull into the neck. (This is long after my FM diagnosis but before my ME/CFS diagnosis).

    I found out that this too can lead to permanent paralysis, among other things. I took a trip by car 3 and a half years ago, all the way to Jacksonville to the Mayo Clinic, although physically I was in horrible shape, and it wound up being for nothing. They couldn't tell me definitively if I should get the surgery or not. Their system wasn't compatable with the MRI films that we brought with us, and they wanted me to stay a few more days and get another MRI on their system!

    But I was doing so poorly and my blood pressure was so low, the nurse there asked me if I wanted to go to the ER because she was so concerned with what she was seeing in my symptoms. But I just wanted to get home as soon as possible. So we wasted all that money for a hotel room and doctor consult at Mayo (not to mention the gas for a 9 hour trip) for NOTHING! AND it caused a severe and long crash for my body, unfortunately.

    Turns out the surgery is extremely dangerous and I could wind up paralyzed from the surgery itself! I've done tons of research on the subject, and while some with this condition had success from the surgery, tons more have had nothing but nightmare complications after the surgery. So I've had to put this on the back burner and continue to pray about it.

    I have no idea how much this condition is contributing to my current health issues... It may be a lot or a little... I've had to trust that The Lord is taking care of me in this situation... and for now, at least, I don't feel led to pursue the surgery.

    But I understand your anger and frustration, Sunflowergirl. Just be sure to research all the details of the surgery (success rate, potential adverse effects or complications, etc). And know that I will be praying for you about all this. Please keep us posted... God bless you.

    Blessings and Gentle Hugs,
    Shel
    [This Message was Edited on 03/01/2013]
  6. sunflowergirl

    sunflowergirl Active Member

    So many things with our spine, neck and back that causes physical problems......symptoms of FM/CFS. That's what I'm trying to do, give it all to God. I think you need to come to the worship board and post there. And thank you for your prayers. I pray for you too. By the way, how's your dad?

    I've registered for various spine boards in the last couple of days. Boy, some people breeze thru surgeries and others have even more pain than before. I have a cyber friend, age 73, who had lumbar surgery in Oct. She's in even more pain now than before, and has fallen several time....on her back....and now has more disc problems. She also has the same cervical stenosis I have
    and was given a choice....lumbar or cervical surgery. I feel so bad for all her suffering.

  7. I appreciate your prayers so much!

    Last time I talked to my dad, he was doing well... I just feel bad that I haven't gotten to talk to him all week because I haven't been doing well and haven't had the energy for talking... But thank you for asking and for the prayers for my dad... All of his scans have come back clear... Praise God!

    And yes it is hard to know how much of our issues involve our spinal problems and whether to risk surgery. Only God can give us the wisdom on what choice to make after researching and gathering all the information. I will continue to pray for you about this... Hang in there... God will see us through...

    I'm so sorry to hear about your friend... That sounds just awful! I will pray for her as well...

    And yes, I do need to post on the worship board... I sometimes forget that there IS a worship board... And there is so much I would like to share there... But with my severely limited energy right now, I try to reserve some energy for when my son gets home from school each day...

    And my youngest daughter will be home tomorrow for her spring break... And my oldest daughter is coming from England on Tuesday... and instead of being excited, as I usually would be, I am afraid and apprehensive because I know how bad I am already doing... And I don't know how my body will be able to handle the extra stimulation... So please pray for me on that... I get very upset when I have limited opportunities to see my kids and spend quality time with them, but my body won't let me do what I want to do or allow me to make the most of the time with them.

    I'm praying for a miracle... They will be home for a week... And I will be crushed if I can't have a nice visit with them... I so HATE THIS DD!

    But let's just continue to pray for each other, Sunflowergirl! Prayer is such a powerful thing! Thanks again, so much!

    Blessings and Gentle Hugs,
    Shel
  8. Mikie

    Mikie Moderator

    I'm beginning to think we need to do all our own research and then get two or three opinions. Some of us have, or have had, great docs but as many, or more, have had horrible care. "Do No Harm" should include negligent noncare as well as acts of commission.

    My prayers are with you. Keep us updated.

    Love, Mikie
  9. sunflowergirl

    sunflowergirl Active Member

    Shel.....going to pray for EXTRA ENERGY for you so you can enjoy your daughter's visit. I've had to do that at special times....asking God to help me thru something that I needed the energy.

    Mikie......I've been thinking about you lately and wondering where you were and how you're doing. You're very, very quiet. I hope you're not in a flare.


    We need to take our prayers to the worship board. I think there are people on this FM posting board who are not comfortable reading some of our posts. I don't want to offend anyone.[This Message was Edited on 03/01/2013]