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Tired of being sick

Discussion in 'Suicidal Thoughts and Feelings' started by cutiepie132, Aug 4, 2011.

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  1. cutiepie132

    cutiepie132 Well-Known Member

    Don't even know where to start with this, but I feel like I'm in trouble. I've been sick for 14 years with what I believe to be from mixed connective tissue disease. Severe fatigue, constant pain, now neuropathy, so I get to feel like bugs are crawling all over me, not to mention all of my other annoying problems. The fatigue really makes me feel bad. It's taken everything from me. Since I was in my mid 20's, all I have been able to do most of the time is lay around in bed sick. I got divorced 4 years after getting ill, and chose not to get involved in another relationship because I've been so sick. I was mentally & sexually abused because my ex wanted custody of my kids. I lived with him for over a year before I moved out. I developed PTSD and a severe depressive disorder during which time I made multiple suidical attempts. I have not been able to work, it's hard enough keeping up with everything else. I had 2 kids to raise, tough, but I managed. They grew up resenting me for being sick. It's not like that now, but I think about it alot. All the remarks, how I was worthless, that my life was meaningless, that I'm a lazy piece of crap, how I was faking my illness. They never understood, no one really has. I've been fighting for a diagnosis because it was taken away, and I cannot function without medication to treat that disease. I'm taking it now but it only partially helps. I'm not really that depressed anymore, but I have my moments. When I get really sick, it all starts kicking in. I can't stand it anymore. I feel like if things don't change, I am just going to give up. I guess that is why I am here, hoping someone can help me see why I shouldn't do that. I love my kids, I don't want to leave them. I also would like my life if I didn't have to suffer so much.
  2. Speedy

    Speedy Staff Alumni

    Hi cutiepie132,

    Welcome to SF! :hugtackles:

    I just had one quick question: Have you ever thought about talking to a counselor/psychologist/social worker about this? I assume you have, but I just wanted to make sure.

    Sending more :hug: your way. Hope your kids continue to treat you very well.

    All the best,

  3. cutiepie132

    cutiepie132 Well-Known Member

    I used to go to therapy and I did put some thought into doing it again but I don't think I'm going to.
  4. Speedy

    Speedy Staff Alumni

    I understand where you're coming from, as a fellow who quit therapy a few months ago too after a long two years.

  5. cutiepie132

    cutiepie132 Well-Known Member

    I had a wonderful therapist. Pulled me right through that depression, but it still comes back when I'm really run down. I was doing alot better the past couple of months, but I thought I'd take some laxatives and knock this 160 lbs down some, alot of good that did, it made me sick again, I may snap out of it but I'm not at all happy right now. I took a high dose shot of toradol earlier and about to do it again, and I know it's dangerous medication, but I honestly can't say I care what it does. I know I need some help, but relucant to ask, except for coming on this forum to talk. My problems are exasurating to the point that they seem worse than they actually are, I know that, but I can't deal with it right now (the pain, the neuropathy, my fatigue, my mood).. Kinda wish I had someone who could just give me a big hug and tell me it's going to be okay, but that's not going to happen. I don't have a soul to turn to..
  6. Speedy

    Speedy Staff Alumni

    :( Can you go back to the therapist you speak of? I know you said you considered it but didn't want to earlier in this thread. :hug:
  7. Sadeyes

    Sadeyes Staff Alumni

    I truly know what you are saying as I have a degenerative autoimmune disorder and am wheelchair bound...I know that pain, and the fatigue...I too am always tired...so if you ever want a sister in that awful club, I am here...crabby and all, so please PM me and let's be our own support team...J
  8. cutiepie132

    cutiepie132 Well-Known Member

    I tried to get back in to see that therapist a couple of times, the last time, they were supposed to call and let me know, they never bothered doing so. I'm not so sure this is a treatable problem. I am not in a constant state of sadness. I know for a fact that an antidepressant isn't going to relieve me from feeling sick, thus not fixing the problem. Only thing that is going to help me is if my doctors take on a realization that I am through with this shit, and they need to do their part and find something to relieve my pain, preferrably something that can't kill me, and something I can take daily instead of just here and there.

    Thanks sadeyes. I haven't been so unfortunate to be wheelchair bound, just bed bound. I only have a mild form of MCTD, but my symptoms have never felt mild. I've heard many people with Lupus talk about being in remission, that's a shame you haven't been able to do that yourself. I haven't been on medication long enough to know if that's going to be possible or not.
  9. Sadeyes

    Sadeyes Staff Alumni

    Nothing is mild when it is our pain...hope you have a good MD working on pain managment...it does make all the difference in the world...and whenever you can, get up and move; you will ultimately feel better...hope today brought you some respite...J
  10. cutiepie132

    cutiepie132 Well-Known Member

    My GP isn't really treating me for pain. He gave me 300mg of neurontin after I begged twice. My neurologist has since raised that up to 2400mg. He had me on zanaflex but I had a nasty reaction to that. I can't take Ibuprofen because it hurts my stomach, I have inflammatory disease in my stomach & esophagus. Toradol doesn't hurt it but my GP isn't going to give me that medication. I can only take it so often since it causes kidney failure. Only have one injection left and I don't have the money to get more. I went through a doctor consult online and got this medication. My GP wouldn't let me have it even though he'd give me shots occassionally. He wasn't very happy that I did that but I guess he understood why. My pain got so bad earlier in the year, I was overdosing on antidepressants and sleeping pills to knock myself unconscious to stop it. And yes, I went to the ER immediately following the first time I did this, and I went to my GP several times, with no help but being given narcotics that made me vomit. I gave those back to him, and he didn't give me anything, as most medications never worked anyways, and sent me home in that shape. I told him the pain was so bad, I wanted to put a gun to my head. So I don't know where the understanding was.

    I was diagnosed with UCTD 11 years ago, and was told he thought that may be mild Lupus. My GP took that diagnosis from me and said it was just fibromyalgia. So that was a long time of laying around in bed sick and not having the medications I needed to feel better. My neurologist feels like I have this, and my GP sent me to a rheumatologist in April for evaluation of MCTD with myalgias. I did not like her one bit. She said my fatigue and pain were too vague to mean anything, said I didn't fit the criteria for anything, said I didn't have any trigger points for fibromyalgia but said fibromyalgia was mostly due to depression anyways, she went on to say if she was to guess, that would be what she thought it was, she talked like chronic fatigue syndrome was no different from fibromyalgia, and blew it off like it was a nothing diagnosis, she said my blood work was meaningless (the ANA and my antibodies), said the same thing about my WBC's being low because I only had a few tests that showed this, though now I have more. She blew off the fact that I've had pleurisy, like it never even occured. Told me that you have to have certain things to have a connective tissue disease, like raynaud's, high inflammatory markers, fluid on your heart and lungs (she failed to mention inflammation), occassional low WBC's & RBC's, joint swelling, and rashes. If you don't have Lupus, you probably don't get rashes like the malar rash and whatever else. I told her my first rheumatologist diagnosed mild Lupus and she didn't seem to believe me. Said if he was diagnosing that just because of my positive ANA, and my fatigue and pain, that he was wrong in doing so. She also told me that there was no medication that would probably help me, and told me to just come back as needed.

    I picked up my medical records from both of them. He diagnosed it because of how well plaquenil helped my pain. Plus I had a positive ANA. Her diagnosis in my records was chronic fatigue syndrome, she stated I only had a few signs of connective tissue disease (which I have alot more than a few), and said that was unlikely, said fibromyalgia was also unlikely because I didn't have any trigger points. She went on to talk about how I said my rheumatologist said I had mild Lupus but more or less how she didn't believe me. My antibodies fluncuate when I am in a flare, or if I am on treatment and feeling better. Did she acknowledge that, no of course not. My neurologist wanted to send me to the Lupus clinic out of state but I had no way to go. He said she was a meaningless doctor, that he had plently of Lupus patients that had normal inflammatory markers.

    I got angry. I was determined that regardless of what this rheumatologist did, that she wasn't going to stop me from feeling better. 14 years of this crap, I was through with the shit. My GP has me on plaquenil, and as wonderful as that medication is, it's not enough. So I ordered Imuran online and started taking it too. That is why I am now able to stay out of bed, and half function normally. I also exposed myself to sunlight, and sure enough developed a sun rash, so I took a picture of it for proof. I am going back to that rheumatologist in a couple of weeks to see if I can change her mind in treating me. This isn't some kind of joke. I will not survive this disease if they don't step up and do something. I might just have to kick her ass if she doesn't. (heheehe).. This ESR crap, that has to be high to have a connective tissue disease, is bullshit. I had a kidney infection and it came back at 5mm/hr, I had a severe sunburn and previously had that sun rash, and it came back at 4mm/hr. For some reason my ESR doesn't raise. And I'll be damned if I let that stop me from getting a diagnosis to something I already know I have.
    Last edited by a moderator: Aug 6, 2011
  11. Sadeyes

    Sadeyes Staff Alumni

    You are so well informed and such a good advocate for yourself...that is impressive...and no, do not let anyone stop you from getting what you need...is there a major medical center near you that can do a more interdisciplinary examination? I have found that putting myself in that type of arena has been very helpful, although with what I have CIDP, the EMG results are what are the major indicators...I am on IVIG which has helped slightly, but know how much one has to talk up to get somewhere...please PM me if you ever need a cheerleader to champion your cause...I am always good for an encouraging bark (I am from Brooklyn, NY)...much caring, J
  12. LightInTheDarkestNight

    LightInTheDarkestNight Well-Known Member

    It certainly sounds like you've had a rough for at things, people can be so ignorant as to how severe another persons health issues are. Many GP's think CFS or CFIDS is just a psychiatric issue they are totally clueless and will try to give you an antidepressant to get you "fixed".

    Not to mention if someone doesn't have a diagnoses with something like Lupus, MS or whatever then people will sometimes write it off it off as "there is nothing wrong with you" or "you're faking it".

    I agree with sadeyes you do sound very well informed, which is great. You have to be your best advocate, only you know how you feel and the severity of all of you issues.

    At the end of the day only you know truly how you're feeling and how great all of your physical issues effect your day to day life.

    It's certainly the case that physical issues and suffering effects the mind, if you have so many health problems debilitating fatigue, peripheral neuropathy, many traumas on top of even more sources of suffering it's obvious one would get depressed. I can relate on some level to you as what I listed in this sentence above are issues I am currently dealing with, I have not had any real diagnosis or treatment for my symptoms or condition, it's almost as if trying would be in vain. The ER said I suspect you have an autoimmune disease and gave me prednisone three years ago when I had this painful infection that required very strong antibiotics, for the pain to go away yet I was still left with severe fatigue and other issues.. the antibiotics were clindamycin and clarithromycin....

    Best wishes to you. I give you my deepest sympathies as it really isn't fair how you have to struggle through so much and getting the proper medical care and help certainly isn't some walk in the park.

    I commend you for being strong for your kids, keep it up for them. They need you and I'm glad to hear they're more understanding now.

    I suspect for some people it's easier to think someone is just "faking it" or "it's in their mind" or whatever because then they can just "snap out of it" and be the person they want you to be. Complex people, problems and health issues are much harder for people to understand especially when their relatively healthy themselves which makes it harder for them to relate and understand.
  13. cutiepie132

    cutiepie132 Well-Known Member

    I had an EMG and it came back normal. Whatever is causing my neuropathy is not a pinched nerve or doubtful to be peripheral neuropathy or at least if it was, the EMG didn't show it. My neurologist said my symptoms are very consistent with MS and he wants to do a brain MRI but my insurance after 4 mths has yet to approve this. An EMG is useless for MS.

    I know I have my neurologist and GP to turn to if things don't work out with the rheumatologist. Even though I was misdiagnosed all these years, I know my GP didn't mean anything bad by it. He's not as helpful as I'd like him to be, but most of the time, he puts out an effort to be. My neurologist on the other hand, is determined if it's the last thing he ever does, he's going to make me feel okay.

    Lightinthedarkestnight:: I think an autoimmune disease can initially be set off from infections. I believe your immunity is initally weak, which causes you to become subject to developing an autoimmune disorder. Before this happened to me, I was keeping bronchitis infections, flu, colds. I have this other infection that occurs every 4 to 6 weeks and I haven't found out what that is yet, but I am going to next time it occurs. That is just my theory, if it isn't something that was hereditary to you. If your dealing with severe fatigue, why not have your doctor to test you for an autoimmune disease? Have them to do an ANA blood test and see how that turns out. With medication for that, your symptoms can improve. I've had a hard time over the past week, but the past few months have been so much better. I can stay out of bed, keep up with my housework, go out and do things now. You could at least try like a 3 month trial of plaquenil and see if that helps.

    I'm not sure about any major medical center I could go to. I only have one rheumatologist here that takes my insurance now, and I really don't like her. I could go out of state but I would have to hold off until I get a new engine put in my car.
  14. cutiepie132

    cutiepie132 Well-Known Member

    By the way, I have been doing much better the past couple of days. My depression has seem to of subsided, I guess because I am starting to feel better physically. Maybe I can just spend my time on here trying to help someone else. I just can't believe so many people are going through thoughts of self harm. It's a shame life has to be that hard for some of us.
  15. Sadeyes

    Sadeyes Staff Alumni

    So glad you are feeling better...please spend the time on yourself as well..exercising, meal planning, things that continue the upward curve...wishing you painfree days and wonderful dreams...J
  16. cutiepie132

    cutiepie132 Well-Known Member

    That is one thing I definetly need to start doing is exercising. I might put some effort in starting that today.
  17. cutiepie132

    cutiepie132 Well-Known Member

    My doctor wouldn't give me Imuran today, he said with the uncertainty of my disorder, that he just couldn't, not to mention it can cause liver failure and bone marrow disease, he said he would be putting himself in a position of malpractice, not that I would ever sue him, cause I wouldn't, I understood, it just wasn't at all helpful. I can't feel okay without it, and I would rather be dead then go back to what my life was like before I started taking this medication. That wasn't enough for him to say okay. He even told me to stop taking what I have here at home. Haha not. I ordered it online, I only have a few weeks worth left. I'd have money to get more if I hadn't went to the mall and wasted so much. Damn it to hell. This sucks!

    I am going back to that last stupid rheumatologist I saw but she was sincerely retarded with all of this. I don't know if I can count on her to help me or not. How am I going to make her realize she has to? I think if she doesn't, I'm turning her in to the state medical board for all that shit she said at my last appt with her. Much deserved and good ole payback. It would make me feel alot better. :smile::smile:
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