DRS 1st Post- Desparately Need Advice!!!

Hi, DRS here, this is my 1st post, a little scared. My story begins with last year I got a severe case of C.DIFF, which almost killed me bcuz of meds I was taking for severe Fibromyalgia which, I've been disabled from for approx. 8yrs. The C.Diff actually started shutting down my kidneys & other organs, & was in ICU for 7 days, the in hosp. for 5 more. Took antibiotic Vancomycin for 6 long months & C.Diff never left so had to have a Fecal Matter Transplant, which, in turn has since made my life worse. I've lost almost 40lbs, when I look in mirror I look like someone who's anorexic, even though I eat 3 meals a day along with Boost shakes in between. Bcuz I also have IBS, the FMT has changed my bowel habits & digestive system! My 1st 3months after FMT straight diarrhea all the time & lived on Imodium, then in May went to straight constipation with Severe Cramping & Gas, could barely sit. I tried everything from Low Fod Map Diet, to Miralaxing every AM which my cramping always wakes me about 4AM. No sleeping for DRS. Tried SSRI'S but couldn't tolerate due to Fibro & mix of meds with Lyrica. I've been told my case is too complicated & have lost 4 GI's assistance. Recently went thru hell taking antibiotic Xifaxan to basically clean out any post bad bacteria in gut & was started on Elavil 10mg, which is supposed to also help you sleep but in my case, doesn't, in fact have to wake up every 2hrs to urinate & then the 4AM wake up cramping to have bowel movements, note among the list of sorted conditions I also have bladder disease IC, which it seems to aggravate as opposed to helping it. I'm supposed to Increase Elavil to 20mg nightly & scared, I want it to help with IBS but can't stand the waking up to urinate frequently & no sleep. I know there's a period of adjustment but don't know how long that is. Can anyone out there pls advise on Elavil as treatment for IBS & IC, & How long it takes to Work? As well as how long &/or what I need to do to gain weight back! Sincerely, DRS, no energy, no relief, no sleep, Desperate to get my life back & even go back to work!

10 Replies

  • I am so sorry to hear that you are in such an awful place and so wish I could help but unfortunately I can't. All I can suggest is have a look at Kerry Madwick's page and also you could copy and paste what you have said about and put it in an email to her, I know that she has helped many people out there. Kerry's email address is: kerry_vlf@btinternet.com


    I really hope that you find something that helps.

  • Thank you for responding, I will definitely share my post with Kerry, hopefully she can assist me. Sincerely, DRS

  • You are most welcome and I do hope that Kerry is able to help you.

    Take care


  • Hi I am so sorry for all your pain. I wonder if yakult would help ? It is a probiotic. Also you sound as though you have been through the mill - vitamin d is good for fibromyalgia and IBS. Hope you can find something that helps you soon.

  • Hi DRS, have you ever looked at going private for help for fibromyalgia etc ?

  • Hi little_toad no, how do I look into that & is it more costly?DRS

  • Price would depend on a few factors. What sort of practitioner you choose, private gp, fmp etc, prices can vary.

    Then as its fibromyalgia it depends on your history/symptoms/gp records as to what tests they would decide to do first. And how far into testing they need to go.

    Il pm you a link on tests they do to find root causes for fibromyalgia.

    Seperate food intolerance test is always best as symptoms from them can be pain in joints etc.

    My intolerances would cause me knee, wrist, finger pain (middle one), fatigue, sleep problems, dry eyes, all ibs symptoms etc.

    Are you in usa ? Can i ask did you pay for fmt ?

  • Hi Little Toad, sorry for late reply, the past 3wks have been quite intolerable for me. I had to have another Cystoctopy on my bladder which was very painful to recover from & unfortunately didn't assist with IC night time voiding issues & have had major adjustments to meds & yet another one 2days ago, so wanted to feel a lol better before responding. For the past 10yrs I've paid thousands of dollars towards my Fibro alone, this doesn't included all the diseases/conditions that seem to come with it yet all docs say that Fibro doesn't cause them! Now when I 1st started having systems it was a time when Fibro wasn't really acknowledged in med community so they basically said it was all in my head. But after a few yrs found a clinic Fibromyalgia Clinics of America & that's when I began treatment w/meds & trial & error of diff therapy offered there I got well & was still able to work my very high level position at Metra RR (which required no less than 12-14hrs daily but at this time since I was still working my ins was accepted for all therapy, it was great but they closed 3yrs later & I was pushed to pick a new doc from list provided & I've been w/him since. He's great!. He too has his own clinic Whole Health Chicago (Google this clinic, they offer lots I info on this site) Currently only problem is now that I'm disabled, & using Medicare w/Humana Supplement, they don't accept, everything is out of pocket. Which is a shame bcuz they've grown so much in diff therapies offered. They have moved toward many Holistic Therpies which assist w/many Fibro symptoms But for them to work you have to go on a reg basis which I can't afford right now as when I got C.Diff last yr my husband quit his job to be my care taker & we've been living off my disability check & mostly our savings. I'm well enough for him to get a job now, so he's looking but never imagined myself in this type of physical & monetary crisis right at this young age. But I hope next yr I'll be in position to use these other therapies offered I'm sick of meds & truly hope some day soon I too can find a job that I can handle. So the specialists I use are all part of NorthShore Univ. The copay alone is costly by my ins. covers most & I've applied for finicial aid which I was approved for 6mo but now have to re-apply again. Healthwise this is the worst I've ever been thru but if I don't work w/the system & just physically push myself, I'm giving up & I'll be a fighter until the end! Besides trying to fight the severe IBS, after having C.Diff & FecalMatter Transplant to cured. This actually caused Fibro to go into flare, I have constant tremors in hands, no restful sleep so always fatigued, & always feel like I was in a boxing match, so always sore. The Fibro pain is mostly in my back (also have scoliosis & siatica nerve pain) along w/shoulder & neck) & it also effects my pelvis of all places. With all this going on, let's just say my husband & I have entered a new phase in our marriage... I will write back some more on computer later as my cell keyboard is not cooperating very well. Thank you for responding to me!!!! Sincerely, DRS (Live in USA)

  • Hi, how awful for you to be in such a horrid set of circumstances all i can say is Elavil or Amitriptyline takes about 2 weeks to kick in and start seeing the benefits.

    i really hope you find some relief from your conditions soon. good luck.

  • Dear RobWilde thank you so much for your reply. That's something positive to hear as I can't take the chronic diarrhea, no sleep & tremors at 3am. Starting to have panic attacks from this.

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