I just joined, could use some advice

Discussion in 'Fibromyalgia Main Forum' started by LeightonLAM, Mar 4, 2007.

  1. LeightonLAM

    LeightonLAM New Member

    Let me start out with a little history. About 2 years ago my husband was assigned to Ramstein Air Base in Germany. So he, my 2 sons and I all moved to germany. When we went there, i had a few minor medical problems.

    I had a thyroid goiter and hypothyroidism, post partum depression, mild asthma, and occasional migraines when we arrived in April of 2005. Soon after we arrived i became pregnant with our 3rd and final child.

    The pregnancy was a nightmare. I had preeclampsia, gestational diabetes requiring insulin, placenta previa, placental accreda, and more. Eventually I delivered our daughter via c-section at 36 weeks. she was fine and other than some blood loss, i was okay too.

    3 weeks later I awoke from sleep with so much pain i couldnt move. I could hardly breathe and couldnt even get out of bed without extreme pain. I soon found out that i had a blood clot in my right lung. At times military doctors leave something to be desired. And this was one of those times. They put me on lovenox (blood thinning injections) and sent me home from the ER. NO HOSPITAL STAY AT ALL!!! I was on the lovenox for almost 6 months before they switched me to pills (coumadin).

    During that 6 months, I had really bad pain in my right shoulder, which was caused by the clot. I was sent to pain doctors, physical therapy, pulmonary, all kinds of doctors. I developed pnuemonia 3 times in less than 6 months. I was on Percocet for pain for almost 8 months. My migraines spiralled out of control. my goiter grew, and my thyroid function slowed. I gained weight. And then i had a second blood clot appear in my right lung. This time they kept me in the hospital for a few days and started me on coumadin. They also referred me to reumatology who diagnosed me with fibromyalgia. I was always hurting so bad all over that i couldnt even climb a flight of stairs anymore.

    Due to all the pnuemonia, the doctors decided i should get a pnuemonia vaccine. I went and got the shot, and about 2 days later the area started swelling, and hurting. Then on the morning of the third day, i woke up feeling like i was having the worst flare up of my life. I am still not sure why but i took my tempature, and i had a fever of almost 105. I called my husband at work and asked him to take me to the ER. (with my recent history i wasnt going to take any chances)

    At the ER they tried to drain the abcess in my arm with a needle, and had no luck. They drew some blood and less than an hour after i got there they told me that they needed to admit me because my white blood count was 42,000.
    They started IV antibiotics, and took blood cultures. I stayed for over a week and required 3 blood transfusions. They didnt tell me what was wrong until i read my discharge papers. I HAD SEPSIS!!!

    They had to do minor surgery to open my arm and drain the infection, and then keep it open to heal from the inside out. They had to reopen it 2 more times and it was several months before it finally closed on its own.

    In december of 2006, the military doctors suggested that it might be time to come back to the US where there were more medical services available to me. In Jan 07 we received orders to go to Little Rock Arkansas.

    So here we are. I currently take:
    150 mg Effexor daily for depression
    .05 mg Synthroid daily for hypothyroidism
    100 mg Amitryptaline daily for insomnia and migraine prevention
    5 mg daily Coumadin for blood thinning

    then as needed:
    imitrex injections for migraine
    imitrex pills for migraine
    maxalt mlt pills for migraine
    ibuprofin pills 800mg for pain
    ativan for anxiety
    valium for anxiety for medical procedures
    phenergan for nausea

    and finally:
    MSM Glucosamine for pain relief.

    As of now i am not on anything stronger than motrin for pain. the msm glucosamine i started on my own and it helps some. they tried ultram with no relief and they stopped percocet because i had a physical dependancy to it.

    Now I am in a new town, with an appointment with my new provider tomorrow. I am really nervous about this and also excited that i might finally have a doctor who will help me get some relief.

    Does anyone have suggestions of treatments, meds, etc that i should look into with my new doctor? thanks in advance to anyone who might be able to help.
  2. mindbender

    mindbender New Member

  3. mindbender

    mindbender New Member

    I didn't catch it, do you have Fibromyalgia or CFS?

    I hope that they can get your situation under control.

    Get well's all I can add

    Dan
  4. ask2266

    ask2266 Member

    I have CFIDS, not fibromyalgia, but you and I share some of the same story:

    I caught the flu and flesh eating bacteria in Feb. 2006 and got sepsis. I was in a coma for 2 weeks, and when I woke up I did rehab like crazy. I felt recovered and went back to work in May 2006. After a week back, I got every CFIDS symptom on the list- insomnia, dizziness, nausea, muscle aches, wired but tired feeling, iriitable bowel, headaches. It was crazy.

    Once I developed CFIDS in May 2006, I got recurrrent pneumonia, every 2 weeks I'd get a new strain of it, take antibiotics, be well for 7 days, and then catch it again. I had pneumonia 7 times. The last time they did a bronchoscopy and they found that I had PCP pneumonia which only people with AIDs or on chemo get, showing severe immune weakness. My doctors were astounded.
    I imagine that you got sepsis from the shot because your immune system is so deficient, much like mine was.

    I have basically followed the treatment protocol in Jacob Teitelbaum's book "From Fatigued to Fantastic" (lousy name, good book).

    Here's what I take:

    cortef 10mg (for dizziness)
    florinef .05 mcg (for dizziness)
    heparin 10,000 units per day (for over clotting issues)
    plaquenil 400mg (for chronic hives from sjogren's syndrome)
    nystatin (for yeast overgrowth)
    diflucan 200mg (for yeast overgrowth)
    Pure T3 75 mg(for muscle aches and headaches) (FYI-synthyroid is only T4, and my body has lost the ability to convert t4 to t3)
    Famvir (2000mg) (for mono virus that i had at 18, but has reaserted itself against my weajended immune system--this has actually helped me the most with all of my problems)
    vitamins
    minerals
    antioxidants
    ambien/lunesta (alternate for sleep)
    klonopin (for sleep and wired/overstimulated feelings)
    celexa 40mg (for depression that I developed in 2001)

    I go to the Fibromyalgia and fatigue center in Atlanta. I don't know if there is one near you, but mine has been helpful. Some people don't like them because they sell lots of supplements and don't take insurance, but they are on the web at www.fibroandfatigue.com.

    Hope this helps!
  5. mindbender

    mindbender New Member

    So, do you feel beter?

    I'm reading all these posts and I'm not hearing how we feel now after all these things
  6. LeightonLAM

    LeightonLAM New Member

    I am not doing much better and still have lots of pain and little energy. I really worry that the new doctor with be as bad as my last one.
    I really need to get feeling better enough that i can take care of my kids. When we got back to the US last month my husband and i had to send the kids to stay with grandparents because i cant even lift them anymore. they have been gone 2 weeks and it feels like a lifetime. Tomorrow i see my new primary care provider and i am so scared
  7. ask2266

    ask2266 Member

    When it all started, I'd say that I was at 15%. The pain, fatigue, wired feelings, brain fog, muscle tingling and burning, and insomnia made me mostly homebound.

    Now, I'd say I'm at 75%. The pain is gone completely. (Few people know that muscle pain is one of the symptoms of low T3 (hypothyroidism). I'd try to find a doctor that will put you on pure T3 from a compounding pharmacy and raise the dose until your muscle pain feels better--unless you have hyperthyroid side effects, of course.)

    My sleep has improved dramatically. I feel like I'm getting better, slowly but surely. (big knock on wood-- the main thing is that I have hope)I haven't had pneumonia in 2 months either, and my natural killer cells have returned to normal level.

    Get your doctor to check your natural killer cells for sure and whether you have any herpes viruses or bacterial infections-- these include herpes 1, herpes 2, varicella (chicken pox), HHV-6, EBV (mono), Lyme disease.

    I'd read alot of the posts on this board-- they are stock full of recommendations. And, FOR SURE, buy Teitelbaum's book.
  8. LeightonLAM

    LeightonLAM New Member

    I am going to look into the difference between t4 and t3. thanks for the info. I hope you get better from so many pneumonias. I know it is really hard to bounce back, and i have had it only 3 times compared to your 7 during the same time period.

    Tomorrow morning will either begin my path to recovery (or the closest thing to it with all these chronic problems) or it will continue the very long battle of trying to find doctors who believe me and are willing to do what they can to help.
  9. LeightonLAM

    LeightonLAM New Member

    I have quickly discovered that if i had read through the posts before asking for help, then i would have most of the info i was asking for.

    It sounds like a lot of my mis-treatment over the last year has been due to military doctors taking care of me. The doctors where i lived were the ones who took care of all the critical soldiers from iraq. So i guess losing an arm, or being burned on 80% of your body is worse. I can see how it would be hard to listen to a 29 year old woman complain that "everything" hurts.

    I feel hopeful that i can get better care now. And really hope that my new doctor will be a good one.
  10. cbs1234

    cbs1234 New Member

    Sorry to hear about your horrendous problems.

    What antibiotics were you on for the pnemonia? Did they ever give you levaquin, cipro, floxin or avelox? Did any of your pain or nerve problems start or get worse after the antibiotics?

    These drugs are known for wreaking havoc on the body. The fatigue, all over pain, etc. sound very much like you suffered a reaction to one of these drugs.
  11. desertlass

    desertlass New Member

    May I ask if your doctor explained his reasoning about the "physical dependency" to Percocet and taking you off of it? I'm wondering why they didn't take you off of the thryoid medication due to a "physical dependency" if it comes to that.

    Do you feel like your bodily pain is taken seriously at all?
    Do you have CFS or FM?

    I hope this new doctor will be compasstionate and motivated to help you.




  12. LeightonLAM

    LeightonLAM New Member

    I dont remember what antibiotics i was on for the pnuemonias and sepsis. I will have to look it up in my medical records.

    as far as the dependence, the doctor just said that being on narcotic pain relievers long term will cause a dependence and that he didnt want that to happen. So i have been being treated with just 800mg motrin for the last 6 months or so.

    my new doctor here in arkansas has put me back on the percocet. 325/10 dose. 1 pill 2 times a day every day. And more as needed. he is also going to send me to a pain clinic if this isnt enough. it feels like a weight was lifted from my chest.