Possible Fibro Help!!!! (From a cynical fibro sufferer!)

Discussion in 'Fibromyalgia Main Forum' started by Fibro-Friend~Shantel, Oct 1, 2005.

  1. Hi there everyone! I am Shantel. I have never done this type of forum discussion before, but I figured since I may be able to help someone with Fibro, I had better try it out. Even though this is long... please take the time to read it... it could help you!!!
    I am what I guess you would call a "tenured" person with Fibro. I was diagnosed 7 years ago and have lived with it daily since then. My husband is one of these guys who is very against pain medication and needs to fix everything so needless to say, we have tried about every option to cure this thing from Coral calcium to....., energetic balancing, Chinese herbal teas made especially for me, many naturopathic meds, juicing, yoga, kinesiology or muscle testing, healers, massage, etc... And about 30 more that I won't list. Anyway, you get the picture. Unfortunately, none of these things has really made a huge difference in my pain. It may help for a few days, but there has been nothing dramatic.... until now!!!!!
    Everyone's body is different. My fibro started after my father passed away unexpectedly and a week later I got a kidney infection. After that, the pain over my kidneys never went away. It has since spread to my neck, hips, knees etc...

    Over the years as the pain grew worse, I became bedridden for 2 years. Yes, I said years. I left my house about 6 times in 2 years and was rarely out of bed. Somehow I managed to escape from depression as I have an awesome support network of family and friends. But... the pain became unbearable and inevitably I found a pain management doctor who prescribed my meds. I have been on everything. Oxyfast, Oxycontin, Actiq suckers (Fentynal)-used for cancer patients, Hydrocodone (Vicodin), MS Contin (morphine), Methadone, Muscle relaxers and sleeping pills.. I have tried them all and thank GOD I don't have an addictive personality or I would be a complete drug addict by now.

    I have become a very very cynical person about anything that calls itself a "cure" for fibro... so usually when someone tells me about a new product that supposedly helps people with fibro, I just roll my eyes and hope the person will finish quickly so I can be on my way... Well.... you can’t really do that with your own mother. One day, she comes over and tells me she has been reading about something that has helped many many people with auto-immune diseases/conditions. I started to roll my eyes and she whipped out some cotton cloths and a bottle of some sort of oil, and a heating pad. I laughed at her. "Mom... what the heck are you doing?” "Honey... shut up and roll over... I love you," she replied. I did and she proceeded to slather the cloths in the oil and put them on my back. She covered them with a garbage bag and laid towels underneath me so we wouldn't make a mess. I then laid on the heating pad for 2 hours. It was Castor OIL!!!! "I thought you were supposed to drink that." I said. She said, “Dear... just wait... I need you to do this for me and we will see if it helps." She also gave me a book called The Oil That Heals by William A. McGarey, MD. It is a Physician's Successes with Castor Oil Treatments.
    To get to the point... after seven days of doing this treatment for 2 hours/day... I swear to you... I was like a new person. I have been feeling like a million bucks and the only other thing I am doing simultaneously is taking 24 pills of fish oil (DR. Sears's fish oil)-thanks to my tenacious husband- and drinking a shot of Mangosteen a day. Mangosteen was brought to my attention by an angelic friend of my moms. It is distributed normally by multi- level marketing groups and I of course ran the other way when I found that out. Hence, my dear old mom again stepped in and bought me my first case ( 4 bottles for $120)! I felt guilty, so I decided I might as well take it for at least a month. Here I am 3 months later... feeling better than I have ever felt in my life since having fibro.
    I don't know guys... I wish I could step into every one of your lives and do for you what my Mom has done for me. She has made the cynical, negative thinking person (ME)--- have hope and happiness again. So.... if it only helps one person out there, please try these 3 things for at least 2 months and see what happens. It certainly won't hurt you, and if it "cures" you or even makes you 10% better, it is worth a shot!


    12 Fish Oil pills in AM and 12 after dinner (# will vary for each person)
    2 shots of Mangosteen juice/day- Also known as Xango
    7 days on and 7 days off of Castor oil packs with heating pad for 2 hours/day

    :D By the end of this week I will be off ALL OF MY MEDS except one muscle relaxer! I have not told my husband I was doing this because I wanted to surprise him (and I wasn't sure if I would have to start the meds up again if this was just some strange month of luck!). We may even be able to start thinking about having another baby. It is truly a miracle. I am not saying I am totally cured. I still have some bad days and crash every once in a while... but compared to 3 months ago when I was on Morphine that would kill a 400lb man, sleeping meds, 2 muscle relaxers and Oxyfast and still in bed 1/2 day every day ... I am a new person. I am so grateful and I want to help someone else because I have been blessed to have a lot of my pain taken away. Why? Who knows... but try these things... they may work for you too. I wish you all the best. I hope I help even just 1 person.
    Best of luck!!!! Shantel
    p.s. Sorry so long.

    [This Message was Edited on 10/01/2005]
  2. pumpkinpatch

    pumpkinpatch New Member

    I'm happy your getting some relief.

    Is it safe to take that many fish oil pills per day? I'm taking 3 omega fish oils.

    You said put the castor oil on your back then cover. What happens if you have pain all over especially neck?


  3. LollieBoo

    LollieBoo New Member

    When I have joints severely acting up (I get bursitis in my right knee and hips), I will do castor oil packs on my knee/ hip, wherever... very messy- castor oil is heavy and sticky- baking soda will get it off the easiest. But ice never helped and heat helped, but only when I'd take a hot bath- then as soon as I got out, it'd hurt again! Heat with the castor oil packs gave the only lasting relief.

    As far as what I know about EC's advice on castor oil packs to the abdomen- this was to increase eliminations, and to balance female issues (with a caution to menstruating women, as "castor oil increases flow").

    Castor oil packs to the spine were often recommended to correct imbalances in the nervous system.

    I don't know what is in Mangosteen, but I think I would DIE if I took 24 fish oil capsules/ day! I can't stand the EFA pills that I have that have a little bit of fish oil in them because of the fish burps I get!...and I only take 3!

    Thanks for your story!
  4. tandy

    tandy New Member

    your story is very inspiring!!
    I'm so glad your being helped~
    and were willing to share with us all :)

    I've heard about the castor oil paks~ and never gave them a try. I will now.
    I heard its very messy but sooooo worth the effort!!

    Can I buy castor oil just about anywhere local?
    and what section or where would I even look?

    I already take fish oil,..tho nowhere near what your taking!!
    I hope you will stay feeling better~
    :) Hugs
  5. JLH

    JLH New Member

    I am glad that you are getting some relief.

    I just read in Dr. Gotts' medical column in my local newspaper recently about someone rubbing in castor oil in his bad knee for so long .... then his knee was helped tremendously.

    Maybe there is something to it!

  6. matthewson

    matthewson New Member

    and welcome to the board. I have been taking mangosteen juice daily for 2 weeks now. My mother bought it for me for my birthday! I have to say, I think it is helping somewhat. My feet do not hurt as bad as they usually do. And my joint pain that I sometimes get, hasn't reared its ugly head in the 2 weeks I have been taking it.

    I think Mangosteen juice has a lot of anti-inflammatory properties. Even though we fibromites aren't supposed to have inflammation with this DD, I think some of us do.

    Glad to hear you have found something that works. I wouldn't mind giving the castor oil a try since it seems to be pretty innocuous.

    Take care and I think your mom and mine are a lot alike!
    They are trying to get their daughters better!

  7. Hi Cindy,
    Thanks for your reply. Yes, it is safe to take that many fish oil capsules/day... for some people. There is a test called the VFH SIP test. The phone number is....
    (519)-824-4120 Extension 58817 This is the blood test a person can take that will tell you what certain levels are in your blood, and then you can figure out how much fish oil is needed. I do take a lot. I have a guy named Scott that is a fish oil "guru"... He is the one who told me about the test. If any of you out there want his number, I will ask him if it is ok to post and you can call and ask questions. Scott works directly with Bill Sears (The Zone Book, and Fish Oil Specialist and creator of the "cleanest, purist, fish oil capsules") and he cured(or balanced) himself of bi-polar disorder by using fish oil and diet!!! I couldn't believe it! He is a great guy. As far as the castor oil. I beleive it is ok to put the packs anywhere you have pain. I would just cover them with plastic garbage bags so you don't get a mess! Good luck and the best of wishes!!!!!
  8. LollieBoo-
    Ha! You crack me up! Yes I know what you mean about the burps! What is really funny is that when I first started taking them I would get them too.... Then I realized a secret! If you eat first... then take them with a full glass of water... NO MORE FISHY BURPS!!!!! (For me anyway.) Good luck and best wishes!!! P.s. I just replied to a Cindy about different fish oil for different people. There is a test you can take to tell you how much to use. Also, there is a guy I know who is a guru of fish oil. If you want his # I can get it for you, I'm sure.
    Take Care! Shantel
  9. Hi Tandy!
    Thanks for the sweet message. Great question about where to buy the castor oil. My mom just happened to have a jug of it and I just ran out yesterday. She suggested a homeopathic drug store, but when I asked them they gave me a two ounce bottle. Not quite enough! ha. I will be looking on the internet to find some and I will post the info on the site under the title "Where to get Castor Oil", OK? I will try to do it this week. I hope you get some relief! It has made a huge difference for me, as I said. Have a great day!!!
  10. pumpkinpatch

    pumpkinpatch New Member

    Do you do the full 2 hours at once and only on your back?

    Did you have pain all over or only in the back area?

    I read a bit on line and saw that it's great for toxins and bacterial and lymphatic system and helps the organs.

    Are you still doing this everyday?


  11. JLH,
    Hi! It is worth a try!!! I hope you get the great results I did!
    Best of luck!
  12. Sally,
    Thanks for the reply... I have been emailing everyone back that responded to my email.. I hope that is ok... I hope I'm not driving everyone crazy with my responses. Do you do this board a lot? Are you supposed to answer all of your replies? I just started so I'm not sure...
    Anyway.. I feel bad not answering! ha.
    Try the castor oil... It is really messy, but so worth it.
    Thank God for moms... they are the best.. This might make you laugh...

    Mommy test
    > I was out walking with my 4 year old daughter. She picked up something
    > off the ground and started to put it in her mouth. I took the item
    > away fro
    > her and I asked her not to do that. "Why?" my daughter asked.
    > "Because it's
    > been laying outside, you don't know where it's been. It's dirty and
    > probably has germs." I replied. At this point, my daughter looked at
    > me with total admiration and asked, "Wow, how do you know all this
    > stuff?" Uh..." I was thinking quickly. "All moms know this stuff.
    > It's on the Mommy Test. You have to know it, or they don't let you be
    > a mommy." We walked along in silence for two or three minutes, but
    > she was
    > evidently pondering this new information. "Oh, I get it," she
    > beamed. "So if you
    > don't pass the test you have to be the daddy.""Exactly," I replied,
    > with a big smile on my face and joy in my heart.
    > >
    > >

  13. Hi Cindy... Wow! You are on line right now, huh? I just wrote you a huge reply, then hit my back button to go back and read your reply so I made sure I was answering all of your questions and lost all of my message to you! Is there a better way to do this reply thing? I am new to these boards so I am sure I sound like a dork... but oh well...:)
    I do try to do the castor oil packs for 2 hours/day but that is because that is how long my 2 year old son sleeps at his naptime! Some days I am not so lucky. (Yesterday I only got in 45 minutes and then had to deal with a soar back AND a crabby kid! ha.) I would have to say that for me anyway, the more I do, the better I feel, but I am not sure if you can "OD" on it. My mom read the whole castor oil book that I mentioned and she told me to do 4-5 days on ... and then 2-3 days off. I don't know if that was what it said in the book or what. When I finish reading it I will post the amount if it says one, Ok?
    My pain is mostly over my kidneys. I do ache all over... of course, just like you all do too, but my excruciating pain is in my kidney area, numbness-burning in shoulder blades, and hips and knees flare up too on my really bad days. I put the packs mostly on lower back and shoulder blade area. I haven't done them on my hips and knees because I have felt so much better since starting to use them! :) I would tell people to put them wherever they have the most pain. I guess it goes right through your skin and into your system!
    I truly hope you get good results from it! :)
  14. elastigirl

    elastigirl New Member

    My mom used to make me drink a spoon of castor oil everyday (I think it was castor oil, tasted like nasty, oily fish?)

    Anyway, I can literally remember the first time I ever felt a stiff muscle from leaning one arm too long. I'm certain I was a preteen, 11 or 12. Given all the muscle pains my cousins had from the time they were 5-ish on, maybe there was something to taking Castor Oil orally too.
  15. Elastigirl,
    Yes, I think so! I suppose any way you get it into your body would be good. Although, if it really tastes yukky, it might be easier to put the cotton soaked cloths or "packs" as I call them, on the skin and let it soak in! :)
    Have a great day!
  16. pumpkinpatch

    pumpkinpatch New Member

    thanks for all the info!!

    I bought the oil at the health food store 16 fl.oz for $12.00. Tried it yesterday. Will give it a try today. Do you put the heating pad on the hottest setting? Sorry about all the questions.

  17. Cindy,
    Hi! I am sooo happy to hear you are trying it! Give it a few weeks before you expect to feel better! (Although some people say they feel different after 3 or 4 days!)
    As far as the heat goes... my wonderful mother said "Put the heat to as hot as you can handle it without being uncomfortable." For me that setting was medium cuz my heating pad heats hot and after 2 hours it gets pretty toasty. Also... a little advice for removing the oil. Forget about water and soap as some have suggested. It is way too complicated and way too much work. I just take an old towel that I will throw away after a few months, and wipe off the oil with direct pressure. It comes RIGHT off and leaves very soft skin behind! :) It takes 2 seconds that way and time is very important to most people so if an old towel has to be sacrificed.... so be it! ha. :)
    Please let me know how you are doing in the future. I will keep my fingers crossed and say some prayers for you!
    Shantel from AZ... (Where are you from?)
  18. pumpkinpatch

    pumpkinpatch New Member

    I'm from Calgary, Alberta. Great skiing country! Have 3 sons, one who just moved from Vegas to Minnesota.

    I went to the Denver Fibro Centre this summer and my hormonal levels are really improving. Way more energy but the pain is still there big time!! Hard sore shoulders, back, neck, calves.

    I don't like taking too many pain meds and try the natural route.

    I'll try the oil for the pain. It can't hurt.


  19. Cindy,
    It is nice to meet you! I can't believe your sons are moving to Minnesota! I am originally from Fargo, North Dakota! ha. The people in Minnesota are amazing. Good mid westerners who are usually very kind. I grew up in a little town called Williston that was 60 miles from Canada so I am familiar with Canadians and we probably share a similar accent! (Aye) ha.
    I understand about your natural focus. Good for you. I have had to work my way through terrible drugs for relief because I was totally unable to function. Finally I am down to almost nada! Please let me know how you are doing in the future!
    P.s. I have one son who is almost 3 named Blake. (Love of my life!!!! From one mom to another... I'm sure you know what I mean!)
    Have a great day.
  20. orachel

    orachel New Member

    Thanks for all the information! I'm literally on my way out the door in a few minutes to get the stuff to try this as I'm a big old mess lately! lol

    My mother was the uber-hippie...I had to take gigantic spoonsfull of both castor oil and cod liver oil (you wanna talk about fishy burps, lollie?! LOL You ain't seen nothin yet till you try the liquid version orally! eeich.) every day.

    I've always been a big believer in natural medicine, but this fm/cfs hit me so fast, so hard, and so out of the blue that I'm currently drugged like a bull moose...and even that has me barely functional. I'd gladly WELCOME some hardcore pain meds, as the strongest I'm on is 400 mgs of Ultram daily...it literally does not even touch the pain most days...let alone take the edge off! My godmother is staying with us now to help assist in my care, and she's partially disabled with shoulder/back problems that are severe. She's a devotee of morphine (time release) as that's the only thing helping her at all! I've been on the verge of BEGGING my physiologist to prescribe something stronger as I'm doing every "psychological" trick to deal with this pain, and still just having horrific pain daily.

    I'm really excited about this! I'm off to find a tub of castor oil (can't imagine where you get in such large quantities! Sams club? lol). Also, I have no idea where you obtain Mangosteen...very interested in adding that, but perhaps 2 weeks or so after castor oil.

    Welcome to this board! Your first post sure was a useful one! LOL....looking forward to getting to know you better. This board has been an immeasurable solace and source of information and support for me! The people you meet here are all amazing in their own way...everyone has their own story and we all utilize the benefit of our combined experiences. I had a horrific medical scare about 2 weeks ago...rushed to the er as doc thought I was having multiple Mini-strokes. Big ole mess ensued with er visit, then my pcp was behaving like a bum....just a wretched day and at the end I still had no reason why my neurological problems had gotten so bad, so quickly. This was much more than just "brain fog" and I was scared to death. None of my docs had any answers. A few of the people here read my cry for help, looked over my list of meds and my symptoms, and literally diagnosed what I was having as an interaction between two of my meds. For me, that was a lifesaver! Literally! I hope you continue to spend time here and can get some fun out of our little group.

    And no...I am the talkin'est person in the universe, and noone here's told me to "shush up" yet. Noone will ever mind if you answer questions right away! LOL...and of course, we all understand when questions go unanswered or one of our favorite members goes awol for a few days because we all have our really really bad days, too.

    For me, my husband is an amazing support, and now my godmother has moved in to help me as well. But there really is no better support than dealing with a ton of people who know, almost exactly, what you're dealing with every day. That feeling of aloneness in this awful disease has just gone away.

    So welcome, and I hope to see more of you! And thanks for the advice in a big way!

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