PAIN, and other awful symptoms getting way worse

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jan 14, 2010.

  1. AuntTammie

    AuntTammie New Member

    LDN was helping pain, but not this week

    I have been in the worst pain I think I have ever felt and I don't know why.....the LDN was making a very big difference in my pain levels (about 30% better), but like I said, this week was really, really bad....and since I am on the LDN, I couldn't take tylonel 3 or darvocet (the only pain meds that I have been able to tolerate in the past, aside from the muscle relaxant, Flexeril, which I did take and it only helped a tiny bit)

    I tried; the tens unit, flexeril, extra malic acid, advil, aspirin, (the advil and aspirin don't help with the all over pain, but they usually help with headaches and I had an incredibly horrible one of those, in addition to the all over stuff), heating pad, icy hot, another topical gel, gentle massage, stretching...probably something else I am forgetting....nothing helped - I was actually crying from the pain and I have not cried from pain since I was 8 yrs old and had multiple broken bones and a concussion....since then I have broken many more bones, had surgeries, shredded a tendon, had all sorts of other injuries, and of course had Fibro, CFS, MPS, TMJ, it takes an awful lot to make me cry from pain (that is not meant to knock others who do cry more easily - sometimes I actually wish that I could cry more easily - it's just to explain exactly how bad this has been)

    so now I am trying to figure out why the LDN stopped working and what I can take if I stay on it for breakthrough pain (Ultram is iffy bc it acts like an opioid even though it isn't one, and it can cause seizures and breathing issues, and I already have some risk of seizures and do have breathing issues)

    between the increase in exhaustion, the constant nausea and inability to eat most foods w/o having them come rt back up, and the breathing issues....and now the increase in pain (oh and my insane electric bill this month - $160 for a small one BR apt & I don't even heat the bedroom!!), I am NOT doing well rt now.....something really has to improve bc I truly cannot take this much longer (no I am not suicidal - just really not ok)....oh yeah, and then there's the neighbors who moved in above me who are suddenly being very loud....I asked them nicely to turn their music down a little, and they did for a little while.....then it went rt back up (and it is being somewhat buffered by the heater and the air the summer, the heater obviously won't help, so if they do not improve I am going to be going nuts.....noise REALLY bothers me)....and there are some other things going on, too, but I won't keep ranting....just needed to get some of it out
  2. Elisa

    Elisa Member


    When I can't take it anymore - I eat tart cherries until the pain goes away - pretty potent and most times - it work 90%+.

    Much real research that support it.

    I buy Eden Organics dried tart cherries - Montmorency type.

    Amazon offers a three pack - it's worth a shot - they also are a source of melatonin - which can help with sleep too. No matter what they are healthy - so not a waste of money...

    I have severe pain (so bad I think I will expire at times) - tart cherries are one of my big guns...POW!

    God Bless,

    [This Message was Edited on 01/14/2010]
  3. kat0465

    kat0465 New Member

    are you on the 4.5 mg dose yet?? like a lot of others i started on a much lower dose, and am just now at 3mg dose, still building up to 4.5

    i was having more pain than usual, not as bad as what your explaining, so i upped the LDN from 2.5 to 3

    Just wondering if maybe you need to up it if you havent already.
    i sure feel for you, especially the nausea! it got so bad for me that i lost almost 50 lbs in about 4 months.

    they never could explain to me why i was throwin up & losing weight,
    Have you maybe tried Phenergan for the nausea?? i know its not a pain med, but it may help you sleep thru the worst of it along with helping your nausea.

    Im so sorry your having such a rough time,Praying your better soon!
  4. AuntTammie

    AuntTammie New Member

    I am not on the LDN boards - just don't have the energy (and also cannot spend that much time online w/o other problems) for any more boards (I am on this one and phoenix rising predominately and a couple of others that i should probably drop bc I am never caught up with them)....if I had more energy & could handle more time online w/o getting sick and dizzy, etc, I would love to go to those boards, too.....a laptop would probably be helpful in this regard, but I cannot afford one

    if this keeps up, though I may have to check out those boards too
  5. AuntTammie

    AuntTammie New Member

    good to know....I will definitely have to try tart cherries
  6. AuntTammie

    AuntTammie New Member

    I'm only on 1.5 now and have been debating going back down to 1 bc I think I upped it too fast (originally started at 4.5 and it was WAY too much, then went down to .5, stayed there awhile, then went to 1, then on up to 1.5).....I really want to increase it, but my body just cannot handle higher doses yet

    sorry you have had to deal with the nausea, too

    I have not tried phenergan, but I have tried a lot of other things, and the only one that seems to help at all is the combo of bendryl and reglan (and reglan is not good to be on long term)....good to know that phenrgan might work, though....will keep that in mind.....I am actually getting an abdominal ultra sound done tomorrow to see if they see anything that could be causing the nausea (& I can't decide if it would be good or bad if they do find something.....if they don't the Dr said the next step would be scoping the area which just freaks me out....and if they don't find anything, then I still have no idea what is causing the problem......but if they do find something, it is not likely to be easily treatable, from what I have read thus far)

    ETA: the weird thing re the nausea is that i don't lose my appetite when i am I don't even get to lose weight (which I would not mind at all, though 50 pounds is an awful lot)
    [This Message was Edited on 01/14/2010]
  7. AuntTammie

    AuntTammie New Member

    tanning usually helps me quite a bit with pain (doesn't get rid of it, but does help), but I have not felt well enough to get there....haven't felt well enough bc of the increase in pain, though, so it's not that not going is causing the problem (if that made sense)
  8. nah.stacey

    nah.stacey Member

    Aunt Tammie,

    So very sorry to hear about your increased pain. While I know nothing about LDN therapy I DO KNOW PAIN. My only help is to get a sleeping pill and go to sleep. Sometimes the overload is soo excruciating that I really do feel I will lose my mind.

    I have been taking ambien for over 10 years now and it is my only means of escape when the pain becomes intolerable. Can you take a sleeping aid? Have you ever taken ambien?
    I have heard sleep called "the temporary suicide". When everything looks(or feels in our case) over the top unbearable, knock out sleep is my ONLY saving grace.

    Perhaps, you could just get some squishy earplugs (I use the blue ones) and some Sominex or some such and check out for a while. I wish there were others ways to move beyond the pain, but sometimes there just isn't.

    My God bless your body and soul,
  9. AuntTammie

    AuntTammie New Member

    thanks for your response......I did actually sleep completely thru one of the days this week (can't remember which one rt now - my internal clock is beyond out of whack) sleep is weird, though.....sometimes I can sleep as many as 36 hrs straight (seriously), and other times (most times) I cannot fall asleep no matter what I do before 3, 4, or 5, or even later in the morning....and I generally wake up every hr or so to urinate, so I don't get deep sleep.....and the pain makes that worse (& not sleeping makes the pain worse, cycle).....I have tried everything and anything (from behavioral/environmental stuff, to supplements, to sleeping pills, etc....most have given me no help, or very minimal help that only last a nt or two......if I only take it very rarely flexeril helps, but I mean seriously I take half a pill less than once a month.....tanning and using a light box have kept me from getting to sleep even later in the day, so I normally do use those, but I have not felt well enough to get to the tanning place, so that has messed me up.....and like I mentioned, it also usually helps a lot with pain)

    I have tried Ambien and found it was making me more tired during the day, messing up my balance & coordination more so than they already are, messing with my cognitive functioning (which is already bad enough), and was also causing me to do things during the nt while I thought I was sleeping (woke up once with candle wax melted all over me - that was weird and a bit scary; found out I had been eating while I was "sleeping";also found out I had called several people and was disoriented & slurring my words enough that they assumed that I was drunk dialing - pretty embarrassing and something I have never done ) unfortunately that is not an option for me.....glad that it helps you, though

    I do use earplugs - they make my ears itch and hurt a little, but they are still so worth it - I cannot sleep at all without them.....i don't use the blue ones, though, maybe I will see if those don't bother me as much as the ones I have been using
  10. AuntTammie

    AuntTammie New Member

    You are rt about it being powerful, and so far I seem to do better on smaller amts, too.....but I keep hoping to be able to up the dose, bc the smaller amt is not helping enough yet

    one of these days I will manage to get to the LDN yahoo grp - it does sound like they have been quite helpful for you
  11. redhummingbird

    redhummingbird New Member

    I really hear how miserable you are feeling right now.

    I was on LDN and had a lot of hope for it after having an initial positive result from it but when I got to a certain dose it started causing some problems like vertigo, nausea, dizziness, and worsened my already bad sleep issues so I stopped it to see if the symptoms went away and they did.

    Some people have had success stopping for a little while and then restarting at a lower dose. I wasn't one of the fortunate ones.

    My doctor said LDN just doesn't work for some people.

    Good luck with the ultrasound (I think that's what you said).

    Keep us posted...
  12. kat0465

    kat0465 New Member

    like usual they will probably not find the cause of your nausea. just like always they never can tell us whats goin on, when i was so sick with the nausea/vomiting thing they scoped me and didnt find a thing but just more stomache acid than i should have had.

    Probably cause i couldnt keep anything( and i mean anything) on my stomache.

    i lost my appetite completely, and was so severly sick i had to be put in the hospital a few times cause i was so dehydrated.

    that was a heck of a way to loose the weight, i have gained it back & then some! although i'd love to be 115lbs again, i'd never survive being that sick.

    try the Phenergan, it really does help the nausea,and will knock you out to boot, maybe that will give you some relief from all that pain too, that might even be the reason for your nausea....PAIN!
  13. simonedb

    simonedb Member

    keep us posted
    hope the cherries help
    sometimes valerian and someone told me a herb boswellia I think it was
    arnica gel maybe msm lotion by NOW in the oragne bottle...
    take it easy