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Pain, insomnia and suicidal thoughts

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

  1. Misfit Toy

    Misfit Toy Senior Member

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    So, this year has been the WORST year of my life. Out of 43 years (turning 43 in 2 weeks and want to hide or sleep through it), I am DONE.

    This summer I was diagnosed with Celiac, Intercostal Neuralgia and in need of IVIG treatment due to low IgG and low IgA.

    For the intercostal neuralgia, which is rib pain that was finally diagnosed, I had a nerve block shot about 2 weeks ago. It was supposed to help. Had lidocaine and steroids in it. Ever since, I have been way worse. I mean, way worse. I can't sleep at all. And, the pain is in full force. I have also developed all over body pain. I mean, all over. Fingers, hands, toes, feet, legs, knees.

    I am a week late for my period and know that that has something to do with it. I have had a migraine for about a week now which coincides with hormones being a mess. The pain is bad, but what is even worse is the insomnia. I have never had insomnia like this. I get maybe 3 hours a night. That's it.

    So, I am going into the pain specialist today and telling him all of this. I am going to ask about a pain pump instillation or PNS. Peripheral Nerve Stimulation.

    I just can't see myself living another 40 years like this and unlike many on here, I am not thinking there will be a cure for this thing.

    To make myself feel better, I envision drowning myself. Literally tying a boulder or rock to my ankle and plunging into water and drowning, because I refuse this kind of pain, lack of sleep and life. This is no life, this is a LIVING HELL. Like many on here, I am existing at this point. My health has declined so much this year, it's insane. I can't make any plans. NONE.

    In the meantime, I am waiting for possible IVIG results to see if I can have that, which will probably take months for Medicare to approve.

    This illness and so many illnesses are all "hurry up and wait" illnesses.

    I am losing my mind.
  2. peggy-sue

    peggy-sue

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    Well, stop thinking in terms of another 40 years for a start :eek: - you have enough trouble dealing with each and every single day as it attacks you.
    There is absolutely no point in multiplying it up in your feelings about it. :hug:

    The reality of drowning would be a lot more unpleasant than your fantasy.

    Please, hang in there, not one day at a time, but from one minute more until the next one minute more, and before you know it, you'll be getting the IVIG treatment, and it will work wonders for you.

    It will be the lack of sleep making you feel so despondent - not just from sleep deprivation - but from the agony of being awake, having to exist in your pain for a whole 21 hours out of 24 - you have my deepest sympathy on that - but it doesn't go on forever. honest!:hug:
    ahimsa, Sea, beaker and 4 others like this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    peggy-sue, thank you because I needed to hear it. Or read that. One minute at a time is about right. Yes, I am absolutely exhausted. It usually takes nights of no sleep and then I just collapse of exhaustion.

    I am going to start taking Remeron for sleep as it helped before, but it put 20 pounds on me before and I never took it off. I am worried about that, but at this point, desperate.

    Anyway, thank you because I have not been able to see a way out of this.

    The drowning part is not pleasant at all. I see myself gasping for air and choking on water, but the good thing is...I see an end to this misery.
  4. Nielk

    Nielk

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    Misfit Toy

    We hear you and trust us that we understand where you are coming from. Being so ill is a very heavy burden to bear. I have been at the low point that you describe and one feels totally helpless there. Do you have any family or friend that you can talk to about this? Any suicidal thoughts need to be taken seriously and it's great that you can share them here but, in addition it would be important for you to speak to someone - preferably someone experienced with this.

    We have a crisis section here at PR - http://phoenixrising.me/resources/crisis-center

    Please take a look at it, read it and take the action of calling someone.

    When someone feels so low, it is hard for them to see the whole picture and it's hard to believe that hings could change for the better. The mind plays tricks on us and doesn't let us go there.

    Being in constant pain is such a challenge. I have been there in the past and it seems that it will never improve. The pain pump sounds like a great idea. It also puts you in control.

    The shot of steroids might have messed up with your hormones and screws up with your mood. Anxiety in turn magnifies pain.

    Peggie-sue's advice of taking it one day at a time is very good advice. Who knows what the future brings for any of us? All we can do is take it one day at a time.

    You have a group of friends here who care about you and understand your situation.

    Gentle hugs:hug:

    Nielk
    Sea, beaker, Valentijn and 1 other person like this.
  5. Misfit Toy

    Misfit Toy Senior Member

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    I would like to say that I am sorry if I am scaring anyone. Firstly, I would not commit suicide "yet." I know that doesn't sound promising. I mean, I am not done yet with finding out all I can and trying to deal with this pain and insomnia. I am just sick of it. I literally can't see right. My eyesight feels like it's not right. I look like hell, too. The circles under my eyes. I have no color in my face. Plus, like I said, my eyesight is off. It's a mess. I am a mess.

    I have talked to my therapist about how I feel. She knows and understands and also knows that I am really just wanting this dread to end. I am thinking about suicide, but not acting on it. It almost makes me feel better to know that there could be an end, but I am not wanting to go there yet.

    Would steroids from such a small nerve block cause insomnia? Nielk, those are my thoughts...meaning, I feel that the insomnia is way worse since the block. And the fact that I have not gotten my period. That always happens with me and steroids.

    The pain pump, from what I understand, is inserted into your body and the side effects from the opiates are less. No itching, etc.

    I am going to talk to him about it today. The last time, he said I was too young, but that makes no sense. The woman who steered me to him is younger than me. I have IC, Vulvodynia, Fibro, Endometriosis and nothing but illnesses of pain. I deserve it. Screw how old I am. That made no sense to me. Pain is pain no matter what the age.
    Sea, beaker and Valentijn like this.
  6. peggy-sue

    peggy-sue

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    If you can get something that will knock you out for a few hours of blessed relief from this agony you are in, get it and take it. :hug:

    The big problem I have with the bags under the bags under the bags under my eyes is finding the appropriate shoes and handbag to match... ;)
    beaker and Valentijn like this.
  7. Nielk

    Nielk

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    You don't have to worry about scaring us. It is important that you and everyone else on the forum can express their emotions freely. We are here to support you as best that we can. (although we can't replace professional help)

    I am real glad that you are talking to your therapist. Please continue to do that. It is not unusual to have these feelings of "wanting out" when one is in such constant misery. It is good to get these feelings out in the open.

    As far as the steroid shot, I'm no medical expert but I know that steroids are very strong. They are double edged because they are so effective but the side effects can be horrible at the same time. I'm not sure if just one shot can mess someone up. I know that in the past when I have taken the 5 day packs of steroids, my emotions are all over the place.

    I'm sorry that you have been hit with so many illnesses at such a young age. It is truly overwhelming to deal with all of them.
    I think that if you can get the pain issue under some control, it will make a HUGE difference in your outlook.

    Comedy could be a great relief. You can read the long thread here http://forums.phoenixrising.me/index.php?threads/joke-of-the-day.574/ or if you feel up to it you can watch some comedy on tv. It definitely helps to relieve (even if temporarily) some pain and depressive thoughts.
    redrachel76, beaker and Misfit Toy like this.
  8. peggy-sue

    peggy-sue

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    Playing computer games can help divert your attention away from pain, because they (can) occupy your short-term memory fully, meaning you don't have any attention left over to let it get to you.

    Q.) Why did the butterfly flutter by?
    A.) In case the woodpecker behind would peck her behind.
    :D
  9. peggy-sue

    peggy-sue

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    I'm still thinking of you! :hug:
    Misfit Toy likes this.
  10. vamah

    vamah Senior Member

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    I hear you on sleep deprivation. It makes pain and everything else that much worse and keeps your brain from functioning correctly. You are right that it is total bullshit that you are too young for a pain pump. To deny anyone pain relief on that basis is sadistic. Keep pushing for it and keep hanging on.
    beaker and Misfit Toy like this.
  11. lansbergen

    lansbergen Senior Member

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    Intercostal neuralgia hurts like hell. You could try Benzydamine cream. For me it lessened the pain a bit.

    Be carefull with cortico's. I think it can make it worse. Don't you have trouble breathing?
    Misfit Toy likes this.
  12. roxie60

    roxie60 Senior Member

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    Oh my MT, hang in there. I still remember those nights of insomnia that seemed to be unending. I would get about 2-2.5 hours at a time. I also felt despondent, aggravated, ready to give up and then to have so many other symps to deal with, I know it's hard. I know you are not me but I did get better sleep after dr put me on estridiol. Obviously that may ot be a solution for you but make sure you know where your hormone levels are right now.

    I know it feels like torture but dont give up.
  13. Misfit Toy

    Misfit Toy Senior Member

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    Hey everyone, I saw the pain specialist and I am to have a sleep study first and foremost. But also, the doctor is going to do the pain pump. This is where it is surgically inserted. I won't have side effects like if you take morphine. It passes the blood brain barrier. Because I don't take many opiates ever, they will start off really slowly because I could get sick. He called me an opiate virgin. I don't tolerate oral opiates. I think it's really interesting how I will have no side effects of being drugged. It just goes directly into the spinal cord and then to the brain.

    Because I have so many pain issues, including IC, vulvodynia and the fibro and intercostal pain...he said I am a definite candidate for the pain pump and it could change my life. I feel a strong sense of relief. You have to give it a test drive first before the surgically insert it. Honestly, I can't believe this. I can't believe I may have help. I am scared it will go wrong.

    lansbergen, I can't believe someone knows what intercostal neuralgia is! It takes my breath away it's so painful. It's way worse than Fibro.

    Anyway, thank you everyone for responding. I may not jump into the depths of the deep waters after all. Here's hoping. Fingers crossed! Thanks, peggy-sue and Nielk. :thumbsup:
    vamah, Nielk, rosie26 and 5 others like this.
  14. Valentijn

    Valentijn Activity Level: 3

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    Great news! :balloons:
    Misfit Toy likes this.
  15. Misfit Toy

    Misfit Toy Senior Member

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    Hey everyone. So, my friend who has the pain pump is telling me that this will stick out on me. Meaning in my stomach. It's inserted under your skin and it's bigger than she had anticipated. This frightens me. She says it changes your appearance for that reason.

    I worry if I get better, a guy won't want to date me if he sees it. What should I do? Suffer with pain or have my life back and possibly not be liked by men?

    Yikes.
  16. Nielk

    Nielk

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    Is this a permanent thing or can it be removed when not needed anymore?
    Misfit Toy likes this.
  17. Misfit Toy

    Misfit Toy Senior Member

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    Nielk, it's permanent. It can be removed, but it's major. It's put into the stomach and connected to the spine. So, you have a scar in the front and back but not big ones. She said the device takes some getting used to. That if you move, it moves or if you bend over, you can feel it. But, it's changed her life. She has CFS.

    I have to do a trial of it first to see if it goes well.

    I am at a point where my pain has hindered everything. So, do I follow vanity? Or, do I have a life from this? Or, at least more of one.
  18. peggy-sue

    peggy-sue

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    Grab the life first;
    Once you've got that, you can deal with whatever life throws at you. :p

    Give me quality of life before quantity any day, and if that means a painkilling pump, and drugs so be it.
    It's not a coloscopy bag that needs regular changing or could leak, it's just a boxy bit of essential equipment.
    Hey, if it works, you'll be falling in love with it.:hug:
    Valentijn likes this.
  19. Nielk

    Nielk

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    How do they try it on you?
  20. Misfit Toy

    Misfit Toy Senior Member

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    Nielk, first they do an outside pain trial. They do a small surgery (procedure) where they put a catheter into the spine and there is a line of meds that goes in that way. You have this for a few days. Like 3-5 days. If you do well with that, you would then have the surgery to have the whole thing done. That's where you would have a thing that holds medicine that is surgically inserted into your abdomen. It's connected to a catheter that goes into the spine.

    It's really not a small deal. It's a 3 hour surgery to do this. This is a lot to think about. A lot.

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