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Pain, insomnia and suicidal thoughts

Discussion in 'Pain and Inflammation' started by Misfit Toy, Sep 9, 2013.

  1. Symptomatic

    Symptomatic Senior Member

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    Ironically, I *have* all my lab results in a spreadsheet, when I gave a printed copy to my GP two years ago, SHE HANDED THEM BACK TO ME! Didn't want them! Thankfully, I found a better doc who took the time to look through my entire history on our first visit.
     
    Misfit Toy likes this.
  2. Nielk

    Nielk

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    @misfit - thinking of you today and hoping you are somewhat better.
     
    Misfit Toy likes this.
  3. sianrecovery

    sianrecovery Senior Member

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    I think you are doing amazingly. Totally get the patience thing, like that for me with my brother. Grittted teeth...
     
  4. Mjmouser

    Mjmouser

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    To Misfit Toy, I understand that the onset of old-age aches and pains on top of what we're dealing with is SCARY!!! A big ME advocate just died (Tom Hennessy?); he killed himself after 25 years of suffering. Do I have 25 years in me??? I don't know. I know the person who suggested computer games has an idea; I have become an avid genealogist. You can set up a family tree on Ancestry, for free. My family rejected me when my illness progressed and I had to stop working, so now I am finding my extended family AND I LOVE IT!!! I hope you can find something that successfully distracts you and rewards you!!! AND YOU NEED SLEEP MEDS. After my sleep study, they put me on Ambien and Flexeril. My sleep still isn't great in quality, but I make up for it in quantity!!!!!
     
  5. john66

    john66 Senior Member

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    Hi MT, I went through a period in January through March where I slept for two to three hours per night. I saw the sun rise wayy to many times. My wife and I were expecting twins, and they were supposed to be born August 5. We lost the heartbeat about half way through. I felt all sorts of mixed emotions when she was pregnant, utter joy. fear that I wouldnt be able to be a good father or provide a financially stable home for my kids. Desperation that I would not live to see them grow up, because my CFS is getting worse. Panic that my sleep problems would get worse. This all turned to despair after the DNC procedure. I was not able to handle the grief well and did not function for a few months. Finally got to the hospital, I could not walk and was eating only peanut butter. I lost thirty pounds and was started on seven drugs. My sleeping slowly got better. At a certain point in the no sleeping phase I started hallucinating. In one of them, it showed that my mother would die if I was not able to care for her if I killed myself.

    I started seeing a therapist every week and he and the medications helped me out of that hole. CFS sucks. The government sucks for not recognizing that people are suffering and we need help. I lost my life, I lost my work, my friends. Worst of all I lost my children. They would be seven weeks old now. Fuck this disease..
     
    Nielk likes this.
  6. Daffodil

    Daffodil Senior Member

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    (((((john)))))
     
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  7. Misfit Toy

    Misfit Toy Senior Member

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    OMG...John, I am so sorry. That's devastating. Honestly, I have no words. I can't imagine the pain you must feel. Losing children is the worst. Grief on top of illness is too much to handle. It just makes everything spiral downward. I could never have kids because I would be a totally unfit mom with this illness. Again, I am so sorry. That's a horrible despair. I know that when my mom dies, my only close living relative, that I will be lost. Lost.

    I am now on sleep meds, which I have always been on. Sleep meds are not the answer. They dull the brain, but I believe, for me, it's bigger than that. I am now on a sliver of Remeron for sleep, which I am not happy about, but I have to be on it. It makes me gain weight. So, I am trying to not be on too much. But, even such a small amount helps me to sleep. There are chemicals in the brain with us that need some sort of setting right. My mind can be way too overactive for Ambien or even Lunesta to touch it.
     
  8. taroki

    taroki Senior Member

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    Ontario, Canada
    OP, I just saw your title "Pain, insomnia and suicidal thoughts" and couldn't help commenting that I think you may have Lyme Disease. Do you have mood issues? Weak/painful joints? CFS/Fibromyalgia?

    I have all of the above (and more!) and recently found out I have Lyme after suffering for many years undiagnosed.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    Been tested for Lyme so many times. Too many to count. It is always negative. Even if it was positive, I would not do antibiotics for 2 years or longer. Not happening.
     
  10. taroki

    taroki Senior Member

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    Even if you test negative, you may still have Lyme. Your immune system probably isn't strong enough to produce the antibodies needed for a positive test result.

    Have you tried other Lyme alternatives like Rife, Doug Coil, Essential Oils, etc? I haven't treated my Lyme yet as I am still working to clear the physical blocks (colonics, liver flush, etc). Each time I try something new and clear something I get a huge Lyme die off (they scatter from my elbows, joints, etc) so slowly I am boosting up my immune system before the big attack (final battle vs Lyme & coinfections!)
     
    golden likes this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    @taroki I have tried rife. It's not easy to find around here, but it does work! I used it back in 2002 for yeast and I was having die off all weekend.

    Right now I am doing IVIG treatments. I have CVID...another illness, but I will have my lyme checked again. If it comes back positive, I will have to do something. UGH.
     
  12. Hip

    Hip Senior Member

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    @Misfit Toy, have you considered taking a supplement regimen to fix leaky gut (or intestinal permeability, to give it its proper name)?

    Leaky gut can cause all sorts of symptoms, and is very common in celiac disease.

    Although you have presumably been gluten free for around 6 months now (you said you were diagnosed with celiac last summer), it can take well over a year of gluten avoidance before for a leaky gut slowly heals.

    This study found that:
    In order to get your gut to heal more quickly, and thus hopefully getting you to feel better, you might consider taking a supplement protocol known to help repair a leaky gut, such as the following protocol:

    Leaky Gut Protocol:
    Saccharomyces boulardii (Jarrow) x 2 capsules
    Grape seed extract 200 mg
    Zinc carnosine 1 capsule (27.5 mg)
    Vitamin E 400 iu
    N-acetylglucosamine 500 mg
    Triphala 1500 mg
    Glutamine powder 1 heaped tsp (6 grams)
    Slippery elm bark 1000 mg
    Zinc 20 mg

    All these supplement have been proven to help repair leaky gut. Zinc carnosine is one of the best, out of this list.

    The research studies that show these supplements work for leaky gut are cited in this thread.
     
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  13. donovank730

    donovank730

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    I just read through the thread and see that you may have a great underestimation of how bad celiac can be for some people. While you said you had friends that were able to work with their disease that does not mean that some people do not become gravely ill, even to the brink of death from undiagnosed celiac. If you have been extremely sick and have been diagnosed with celiac, I would not look for any other cause for CFS outside of that diagnosis.

    Celiac can be a great mimicking disease and while it has some typical symptoms, it also can cause a host of other non-typical symptoms, from rashes to severe neurological issues.

    I also see that you mentioned you eat things that warn they are made in plant that process wheat. If you say you were much sicker than your other friends who had celiac, that it is safe to assume you are much more reactive and this is all the more reason to adhere strictly to a gluten free diet. It has also been proven that celiac's have a hard time processing other grains, and difficult as it may be, it would greatly benefit you to adopt a grain/dairy free diet for atleast 6 months and then slowly re-introduce food to get an idea of how they make you feel.

    You have been given a diagnosis and you owe it to yourself to truly try and see if properly following a strict medical diet will allow you to heal. There are many people here that would love any sort of diagnosis that might allow them some relief, so consider yourself lucky in that you have a chance to possibly fully recover!

    Good luck and message me if you have any questions.
     
    golden likes this.
  14. Misfit Toy

    Misfit Toy Senior Member

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    Well,@donovank730 my doctor who diagnosed me the other day and my immunologist said that they are not sure if I have Celiac. I had high antibodies to it in a blood test, however...I had a stool test that determined I had it. Either way, my intestine is much happier without gluten. But, I never had the gold standard GI work up and I can't because I would have to eat gluten for 3 months and I can't.

    The bigger problem is milk. HUGE. Milk makes me sicker than a dog, up all night, chills, etc. I just gave up chocolate for that reason.

    My GI tract is a mess with GERD and I need to heal my stomach. I do drink slippery elm, but I need something else. I am trying to avoid all food allergies because I am so ill.
     

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