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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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GOOD things happening!! Am I a responder???

Discussion in 'Rituximab: News and Research' started by Jacque, Aug 27, 2012.

  1. Jacque

    Jacque Senior Member

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    Oh God Irene .... there just has to be a better way... This is just crazy making... My pain level was a 9 all day yest... Wonder if Dr. K will let me try the Cymbalta... he doesn't want to add anything to the mix bc then we don't know if the Rituxan is working or what we added... I understand his passion for his research but meanwhile i am sinking like a stone... I am gonna give him 22 weeks and then BEG for something in addition to deal with this frikkking pain.... I have run out of patience - dealing with this for 35 years. How much Cymbalta are you taking?

    And I too live in "stretchy" clothes.... I call them Fibro clothes... Yoga pants, sweatshirts, and I went all out and ordered a dark blue Velour running suit from Victoria Secret yest... Wooo hoooooo

    Irene has your blood work shown progress??? Did you call them to get it or did they just send it to you??? They forgot to take blood on me during 2nd infusion but did during this last one.

    I was thinking last night how this is costing me another 7K plus travel and how bummered I am gonna be if it doesn't work.... as I have spent hundreds of thousands over the last 35 yrs...

    Grumble....
  2. Wayne

    Wayne Senior Member

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    Hi Jacque,

    My partner has long had an interest in essential oil therapy. For a while she was into a brand called Young Living, but has recently discovered

    dōTERRA Essential Oils.

    She feels the latter are superior, and though a bit pricey (both are MLM), finds she can make various concoctions by diluting some of them with "carrier" oils, which are much less expensive. I would think you could also purchase some oils locally, which might be an easy way to get some kind of idea of whether this would be helpful or not. I use about 3-4 drops on each sole. Would be great if it could help even a little bit. -- Good luck!
  3. Dreambirdie

    Dreambirdie work in progress

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    doTERRA are really great oils. :thumbsup: I am extremely sensitive to fragrances and rarely do well with anything that has a strong scent, no matter how pure it claims to be. So I was very surprised that there have been a couple of the doTERRA oils that I have tolerated well.... It's truly amazing.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Has anyone tried doTerra's oregano oil? I have Been using Young Living oils--wonder if this one is better?

    Sushi
  5. Jacque

    Jacque Senior Member

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    gonna ck that out and if I want to order I am guessin I could order from your partner?? No apology for MLM - the BEST products are usually offered through MLM... If I hadn't of built an amazing Melaleuca Business I have NO idea where I would be right now other than living under a bridge somewhere... Can you tell me how much the two would cost me?? i don't understand how they help with pain ... guessin it explains how on their site?

    I take about 80% of my pain medication bc of the severe burning in my neck, back of skull, and pressure in head and mild to severe headaches... it is just CONSTANT... I don't know if it is viral, trimengial neuralgia, or what??? Making me mental that is for sure....
  6. Dreambirdie

    Dreambirdie work in progress

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    Hi Sushi-- I've not tried their oregano oil. I have an allergy to it. The oil I use is a combo called ON GUARD. It's supposed to help with infections. I like the smell, but have yet to see how well it works. I'm sure winter will give me the opportunity to give it a reality check.
  7. August59

    August59 Daughters High School Graduation

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    Hey Jacque - I have had good luck on Cymbalta as well as long as I stuck with our motto "Start low and go slow" I have taken it on 2 other seperate occasions and when or if it ever comes time to stop it try to keep at least 2 weeks worth where you can reduce your dosage in half for a few weeks. Have never had a problem discontinuing it this way.
    Jacque likes this.
  8. Jacque

    Jacque Senior Member

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    Well then that adds more affirmation to the "brain/pain" theory????? hmmmmm I hope you all read the book Betrayal of the Brain by Goldstein...so we can discuss it... It is a GREAT book but VERY scientific... You might want to get the companion guide for patients because the original book is for physicians.
  9. Starfive

    Starfive

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    Hi Jacque,
    I have to check again with my neurologist about the Potiga. I am hoping it might replace the Cymbalta and other pain meds. Will let you know when I seee her again and ask if any of her patients are trying it out yet.
  10. Starfive

    Starfive

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    Hi Jacque,
    I have to check again with my neurologist about the Potiga. I am hoping it might replace the Cymbalta and other pain meds. Will let you know when I seee her again and ask if any of her patients are trying it out yet.
  11. IreneF

    IreneF Senior Member

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    I'm taking 60 mg Cymbalta.

    I haven't been paying attention to my bloodwork. Really what matters is how I feel.
  12. Jacque

    Jacque Senior Member

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    PLEASE PLEASE
    Agree Irene... I wrote Dr. K last night telling him I am gettin MENTAL with this pain...and want to be a good patient for the sake of research...but I don't know how much longer I can hang with this 8-9 level pain level daily... I just want him to pull me out of the research group and get me some relief... Told him I am up to 7-8 Norco a day and still suffer at that...horribly... Will see what he says. I wonder if your pain would be what mine is if you were not on the 60 mg of Cymbalta.

    Have not heard of Potiga... gonna look into that Star 5 and plllllllease keep us updated on what you find out!!!

    So many drugs...so many questions....so few answers and just getting OLDER..... sigh
  13. Jacque

    Jacque Senior Member

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    Yah I am soooo tired of hearing "well your bloodwork looks great"... and then I say well why then do I feel like DEATH!! ugggh... Just curious if your viral titres were goin down..... Hugs
    Xandoff and merylg like this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I haven't heard "your bloodwork looks great!" since I went to a specialist and had more relevant tests. The head biochemist of one lab that tested mitchondrial function (such as ATP) was sort of appalled at my results and said delicately, "You must feel tired!"

    Sushi
    taniaaust1, alex3619 and jimells like this.
  15. Jacque

    Jacque Senior Member

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    Yes I too ... once I went to a Dr. with a BRAIN was no longer told geee your blood work looks great!! But I was told that for years and years and years.... I have never had any mitochondrial function testing done... I am sure it would be BAD... did you tell him oh how I wish I felt "tired".... and not DEAD!!!
  16. jimells

    jimells Senior Member

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    Before starting the CoQ10 a few months ago I would get three day migraines as part of the PEM - but I knew the pain would eventually back off. I can't imagine living with the pain you're describing every day, with no end in sight. I'm praying you get a break soon.
  17. Jacque

    Jacque Senior Member

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    Thank you Jimmells.... How much CoQ r u taking and which brand??
  18. alex3619

    alex3619 Senior Member

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    CoQ10 has been shown to reduce migraines in fibromyalgia I think, this paper came out in the last year but I do not have it handy.
  19. taniaaust1

    taniaaust1 Senior Member

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    I was anti Western med too before I got this illness..and stayed anti Western med till I'd tried tons of natural things.. nowdays thou I still hate popping pills, I'll take them gratefully over most symptoms.
  20. taniaaust1

    taniaaust1 Senior Member

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    Sorry to hear that that you are going throu that pain. I had that bad for 2-3 years in the first 5 years of my ME. My young children couldnt even hug me as it hurt me too much to be hugged... the pressure of a sheet over my body when in bed hurt me. It was a constant nightmare and I didnt have any doctors who would treat any of the symptoms I had at that time (they just kept on saying that CFS wasnt treatable).

    I hope you dont find your bones get worst.. the inner of my bones ended up going like someone was drilling inside of them.. agnosing, sharp pain flares radiating from the bones (which felt like they were under pressure and about to break or something too). I used to be one huge pain flare with not one part of me which didnt hurt. skin pain, bone pain, muscle pain, eye pain and joint pain .. .. and then when they started to settle, I then went to a lot of strange neurological pain (like being bitten in places all over my skin and a constant driving me crazy kind of skin itch). I also got body pain in which it felt like large things were pressing out from inside my body, like critters trying to excape it and burst out throu my flesh. I went from hell to hell.. fortunately thou ended up excaping hell.

    Hang in there, I know that all these symptoms feel enough to send anyone crazy (I seriously thought at the time that I was going to go mad from it all, it was such a fight to get throu pain each day.. I often thought about killing myself to exscape the pain).. what I can say thou is that our symptoms often do change and the pain you have now.. you may not have next year or next month. I dont get those pains now (and fortuanately the weird neurological pain went away too). Try to stay positive and know that your symptoms are likely to change.

    I reall think you need to be trialing something for this pain and maybe even consider dropping out of the current study seeing your pain is at the level its at.. Pain like that can make us not want to live and the longer one has to go with intense pain.. the harder I found it to handle. I never got used to it.. time with it was just worst. It just made me become mentally weak and unstable.

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