What next will you try??

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Jul 5, 2006.

  1. mrpain

    mrpain New Member

    We're all in the same boat searching to find that "something" that will make life do-able.
    So what will you try to do next? What treatment
    or vitamin/supplement, or medicine is next??

    Or have you found something that's made a difference?
    If so, please share.. I'm up for anything that might
    help, even if it's just for a moment..
  2. kholmes

    kholmes New Member

    I have CFS and have tried so many things in the past that I can't even think of them all.

    But what to try next?

    I would try crawling on glass on my knees to Santa Fe if I knew it might help me improve.

    In all seriousness, I've started acupuncture again, hoping that it will help somewhat. I'm also greatly increasing my "live food" intake: vegetables and fruits, fresh green juices, wheatgrass shots, etc...

    Kholmes
  3. blessedmom2four

    blessedmom2four New Member

    on my eating habits, and alittle walking on the treadmill, basic supplements...then will take it further like cutting out the caffeine and ect
  4. Michelle_NZ

    Michelle_NZ New Member

    Good question. I'm so tired of trying new things, and the costs all add up too, especially when you cant work.

    I've just added coconut oil and wheatgrass. Its only been about a week, so to early to notice anything.

    Also thinking of starting some kind of probiotic.

    Take care
    Michelle
  5. CanBrit

    CanBrit Member

    I'm in a reasonable spot these days. I'm starting to get neuralgia in my feet and legs which has not been treated yet but this is what I take for my FM.

    I have a sleeping pill that works wonders (Lunesta (Zopiclone in Canada)). I have 10 mg of morphine that I take 1 each night. Both give me a good sleep so I can handle the day.

    I take a calcium pyruvate 1000mg in the morning. I find that this pill gives me energy and is helping get rid of some of the pounds I've put in since I was diagnosed with a thyroid disorder. It seems to help with fat burning when you combine it with exercise. I walk for 30 minutes every day whether I hurt or not. If I have to take an extra pain pill, I take it.

    I still get pain, I still get exhausted, but mentally I feel much better...much fitter.

    Regards,

    Eileen
  6. Marta608

    Marta608 Member

    I will try the doctor my doctor recommended.

    I'm very pleased with the results of the Paleo diet and the addition of vitamin D. My PA's husband, the rheumy, gets all his FM/RA patients up in D to around 100 to help with pain. It's been amazing with the pain but also has somehow cleared my head. I have times of actually feeling good now between the diet and the D! I told a friend who has RA. She checked with her rheumy who agreed that D is wonderful for pain. Like the Paleo diet that gets us back to eating the way our bodies need to eat, the addtion of D to out supplement regimen gives our bodies the D we need and used to get when we worked outside all day. We're neglecting the needs of our bodies, then expecting them to be well anyway. Oops. Sorry. Let me get my soapbox out of the way here...

    Onward! I will solve this mystery before I die or die trying. (Yes, that is a bit of a Catch-22, isn't it?)

    Marta
  7. UnicornK

    UnicornK New Member

    ...F2F and ACV. Also, I discovered (quite by accident) that Klonopin and Baclofen - taken together - work almost better that many of the narcotics I've been on.

    I do plan to get the book fro Jacob Teitelbaum F2F to supplement the powdered drink mix. Who knows...I might actually learn something! LOL

    God Bless.
  8. place

    place New Member

    My plan is two fold:

    1) get best sleep possible, going to try xyrem. If things still don't go well while on 6 mts of xyrem, I will get sleep study and work on getting the best sleep with other meds.

    2) Going to see Dr. J (formally from FFC) for viral, bacterial and hormonal.

    I have both of these plates spinning right now, I just hope they don't happen at the same time, because I want to isolate each variable.
  9. mrpain

    mrpain New Member

    kholmes; blessedmom2four; Michelle-NZ; marta608; haleycole; unicornk; & place; thanks for replying..

    kholmes- how expensive is accupuncture where your at? The place here wants something like $160.00 for first consultation, and then $80.00 for each visit after that...if my brainfog is allowing me to remember correctly.
    It might even be more....Wow, I'm so braindead!!

    blessedmom2four- I've been trying to get on my treadmill which we bought about a year ago, but I can't seem to find enough energy to get going. I'll do it a couple of times each month thinking I'm gonna do it this time, just to find out I'm only kidding myself. I am eating better though and doing tons of supp. & vitamins..

    Michelle-nz- probiotics are a must.. I've been on them for a long while but I still don't see any changes.. But I keep hearing how it is very important to get our intestinal flora in balance and put in some good bacteria and get rid of the bad..

    haleycole- I just got Dr Teitlebaum's book, "Pain Free 1-2-3" a while back but haven't taken the time to read it yet.
    Have you read that one too?

    unicornk- I'm on my fourth or fifth day trying out apple cider vinergar with apple juice. Let me know how it works for you..

    place- please let us know how the xyrem works for you.. I've been interested in that..

    Thanks to all, I feel like I'm getting to know each of you. Take care!!
  10. kholmes

    kholmes New Member

    I am very fortunate in that my insurance actually covers a certain number of acupuncture treatments a year: about twenty, I think. It costs me around $25.

    Without insurance, it would run anywhere between $70 and $100 here in Albuquerque.

    There's a fairly recent Mayo Clinic study out that shows acupuncture is helpful for decreasing Fibro pain. You might try a Google search on it.

    It doesn't seem to be doing much for my CFS, but I'm going to keep at it for a while.

    Kholmes

  11. mrpain

    mrpain New Member

    donnaeil you have made many new friends on this board also. Please count me in as one of those..

    kholms- your very blessed if your ins. company will cover.. I wish mine would...But I do take advantage of my chiro coverage....or at least I have the last few weeks..
  12. razorqueen

    razorqueen Member

    just wanted to let you know that Lunesta and Zopiclone are not the same med. I thought it was too, but my pharmasist told me different. The are sort of the same, but Lunesta is actually called Eszopiclone. It is longer acting, and you get fuller effect, for lack of better words, than Zopiclone.
    I would love to get Lunesta, but it is not available in Canada. The Zopiclone is NOT working for me. It puts me to sleep, but doesn't keep me sleeping.

    Mrpain- I don't know what I am going to try next. I've tried just about everything, and I don't have insurance anymore, so alot of things I can afford. I AM going off of Effexor and Gabapentin(been on this for 3 wks) as it isn't working and I am gaining weight.(Gaba)
    Actually, once I am off Effexor, or on a lower dose I would like to try 5HTP.

    Raz
  13. Lolalee

    Lolalee New Member

    This is a good thread for me because I am seeing a new doctor who specializes in FMS. She wants me to try some new things.

    New meds - Zanaflex and Lyrica.
    See a Physical Therapist
    Keep a diary of eating and sleeping habits for a month.
    Look into using a Strata Alpha Stimulator to treat
    pain,insomnia and anxiety

    That's it for now.

    It has been a while since I've seen a doctor who cares and is willing to invest the time and effort to help me feel better.

    Lolalee
  14. sorekitty

    sorekitty New Member

    and I will be seeing a naturopathic doctor next. She used to work with my new doctor. They were both highly recommended to me. From what I know she will take a lot of blood and see how I am absorbing nutrients and other stuff. Then I will meet with her and she can help me find out what is going on with my body and if I really have hypoglycemia and what diet changes I need to make.

    I have actually been able to go the the gym and do cardio machines for 25 minutes 3x per week. Only the past couple weeks. I go slow and really listen to my body. I want to start the aquatics class they have there for arthritis. I usually fight exercising tooth and nail!!! But I had the worst flair ever most of June and realize I have to make some changes.

    I also take baths with epsom salts then massage arnica gel into my tender spots.

  15. mrpain

    mrpain New Member

    razorqueen- 5htp is next on my list to try. What has been your expectations for it, and have you started on it yet?

    lolalee-great picture in your profile; Is strata alpha stimulator the same as a tens unit? Does it regulate the pain?

    sorekitty- welcome to the board!!
  16. twerp

    twerp New Member

    I have CFS and have been doing very little exercise. Mostly a lap or two in the pool.

    My anxiety and stress levels have been very high lately, and my Dr. recommended more exercise - specifically Curves.

    So, I am going for my "tour" on Monday. I really hope that it helps and is not too much for me.

    Hugs,
    Twerp
  17. mrpain

    mrpain New Member

    haleycole; I'll have to give Dr. Teitlebaum's other book a try if it is better. What does it have in it that "Pain Free 1-2-3" doesn't have? Also, like you, I'm always burning up or cold.. Mostly burning up but in the morning when I first wake up, I'm cold...

    twerp; exercise is a good thing and I hope you are more disciplined than I am. I've got to do better.. I guess I just need a kick in the pants to get me going..
  18. fibrohugslife

    fibrohugslife New Member

    Well right now I am going in for counseling to help with my mental and emotional problems. I think those have caught with my physical ailments. I don't want to my mentality to get out of control.

    I can't afford much but managed to get the book From Fatigue to Fantastic on Ebay for like $5 on Ebay, so I will be reading more of that. I am going to try to get his other book someday soon.

    I already have changed my diet drastically, workout 4-5 times a week, do Yoga and Pilates, along with Balance Ball.

    I am about to go on vacation soon and visit my second home away from home with my family, out of the country. So I think relaxation is my next thing to do.

    As for supplements, etc. I think to just continue to take my B vitamins. My focus is trying to get all of my nutrients that I need from the foods that I eat.

    I don't have a lot options as far as medications are concerned as it whatever that I can get from the county doctors which is not much.
  19. Lolalee

    Lolalee New Member

    Sweet of you to compliment my profile pic. Thanks.

    Re Strata Alpha Stimulator - it is not like a Tens Unit. This is what the brochure says:

    "The SAS apears to be at least 50 years ahead of the elecrical stimulation market (TENS)

    The SAS treats anxiety, depression, and/or insomnia with tiny electrical currents similar to those found naturally in the body, using a method called cranial electrotherapy stimulation. The treatment is simple. The current is applied by easy-to-use electrodes that attach to your ear lobes.

    The SAS empowers you to control your pain, anxiety, depression and/or insomnia......it can help the body to naturally produce those "feel good" chemicals as endorphin, dopamine and seretonen(that's the way it's spelled in brochure - is this the same as serotonin, I wonder)

    The SAS leaves the mind alert and focused yet relaxed."

    Mrpain, my new doctor swears by it. She suffers with migraines and it helps her. Her husband uses it for back pain. I am going to look into it next week. I think it's expensive.

    Great thread, by the way.

    Lolalee
  20. mrpain

    mrpain New Member

    Ya'll are great. There's so much I could reply to but my mind is like mush tonight.. Brainfog doing double time and foggier than ever. Plus I need to leave to take my daughter so she can practice driving the car during night-time. She's going to try to get her permanent driver's license at the end of the month and she needs at least 10 hours of night driving before taking the driving test.

    I'll be back later tonight to check in here... Hopefully I'll be better mentally when I get back...of course the fog will have to lift..Hope everyone is doing well..
    [This Message was Edited on 07/08/2006]