My Rheum said...

Discussion in 'Fibromyalgia Main Forum' started by 2BPainfree, Dec 18, 2002.

  1. 2BPainfree

    2BPainfree New Member

    I shouldn't be trying to stimulate my immune system (with extra vits and herbs) because my overactive immune system is what got me into trouble in the first place
    (R-Arthritis, CFIDS, FM).....I have heard this before. But how in the heck is a person suppose to feel better and get well unless we Boost up our bodies with what it's lacking???

    Can anyone explain the different theorys to me?

    Sratching my head....
    Susan B.
  2. Shirl

    Shirl New Member

    I'm 'scratching my head too'! That sounds like a contradiction in terms.

    If it would not be for supplements, herbs, etc. I would not be here. I no doubt got this way for being a over doer, but hay, I need something to run on! Car's need gas, we need supplements.

    Even if we are good eaters, the food these days leaves a lot to be desired as for as nourishment, they destroy the soil of all its nutritious elements, then they use artifical fertilizers, then we eat the food that is grown in this depleted soil, so where are we to get some of the vitamins and minerals that our bodies need? Mc Donald's?

    Alright, I will get off my 'soap box', but this doc is out in left field!

    Shalom, Shirl

  3. karen2002

    karen2002 New Member

    I think I understand his response in light of your R-Arthritis.....that does make sense....since rheumatoid arthritis is an auto immune disease...you wouldn't want a more active immune system, as your immune system is already working against you.

    Now in the case of fibro and cfids, this is believed by some to be an immune disorder, and boosting the immune system might have beneficial results.

    Perhaps his fear is if you keep boosting your immune system the RA will worsen, and Rheumatoid arthritis does do damage to the body, and can progress.

    Karen
  4. 2BPainfree

    2BPainfree New Member

    The problem is without supplements I would be a complete wash-out. I wonder where the line is drawn between
    auto-immune and immune dysfunction....I understand both, but BOTH are a dysfunction that needs repairing!!!

    I have noticed alot of articles lately that include R-Arthritis with the FM, CFS, Endo....all talking about how important supplements are. Pooey on my Rheum! Bring on the Vits!! Geeez, SO frustrating!

    (I've been in such a cloud lately, can't seem to think anything through, I appreciate your replies!)

    Susan B.
  5. karen2002

    karen2002 New Member

    I think perhaps it would be important to take the above, we are usually deficient in many things, due to poor absorption, leaky gut, chronic infections, metabolic disrhythms. I would just be careful not to take those things which would boost the immune system. There are plenty of other systems , that could be approached with supps,vitamins, and herbs which would be greatly beneficial, and not have the detrimental effect of boosting your immune system, which will in turn cause further damage due to your body attacking itself. The more RA damage, in my mind, the worse and more probable FMS and CFS will flare.
    Karen
  6. dobegood

    dobegood New Member

    Dear 2BPainfree,

    No, I am not a doctor.
    Just someone who has had JRA (Juvenile Rheumatoid Arthritis) since birth so in that area, I do know what I am talking about :) However, I am Norwegian so please excuse me for the lack of English on some words. I'll try my best though.

    As mentioned before here, RA is an auto-immune diagnose BUT it doesn't exactly go "overboard". That is a myth.
    The true issue is that your own immunity system doesn't understand the DIFFERENCE between your own body tissue and "foreign" tissue. In other words, your immunity system is.........a little bit stupid :)

    Do you see the difference? I wish I could explain it better with the scientists explanation. Here in Norway, they have advanced pretty well in research on RA/JRA, which is basically the same thing, except it's called JRA when you get it as a child. The diagnose follows you until death.

    So, when it comes to medication, I and anyone with RA/JRA takes medication to "lower" the immunity system. Many of us have such a low immunity system that they get a cold 6 times a year and the flu as well. The activity level in MY body is low so I don't use anything except for 5 mg Cortisone a day. My immunity system is lower than normal, that is true. However, I keep it UP AGAIN with vitamins, Ginseng and fish oil (which I can recommend). Even if none of these might help your RA diagnose, they may help your other diagnoses.

    The Doctors I've dealt with all my life are men and women who base themselves on FACTS alone. Research, too. ALL of them say that even if vitamins, fish oil, herb and everything else "from nature" are benficial for anyone's body, they do NOT influence RA or JRA.

    I am a living proof, I suppose.
    As a child and young adult, I was forced by my parents (who only wanted what was best for me) to try everything they read in magazines and books. It would take me too long to mention all of it here but imagine a 5-year old sitting in an ant hive to BE stung? (It was supposed to help) Ha!

    No, take your vitamins, herbs, fish oil or whatever makes your FM better. You see, when you take medication to LOWER your immunity system for RA, they recude it SO much that any vitamins or stuff like that will only increase it "just a little bit". If you don't, you will fall apart with fatigue. Believe me, your RA will not become worse.

    I hope this has made some sense.
  7. 2BPainfree

    2BPainfree New Member

    I really appreciate all of you!
    Thank you for taking the time to write. I feel SO stupid, I am a nurse...and I have always felt a good one at that. I like to help solve problems. But lately, to help myself think through anything at all is a joke...
    (not laughing tho!)

    OK this does sound stupid....but what exactly WOULD over stimulate my immune system?? My thinking is pathtic, huh?!

    My Doc got all mad at me when I told her about the B-Complexes ect that I am taking, can you beleive it?

    Thanks again! (Ouch...sitting on a ant hill?? Yikes, I did that one summer on accident, I'll never forget my Grandma hosing me down, LOL!!)

    Susan B

  8. dobegood

    dobegood New Member

    Perhaps this may help?

    The medicational threatment today is medications that reduce the infection reaction in the joints and therefore the pain, and medication that "slows down" the immunity system's cells so the infection reaction in lesser degree are started in the joints.
    Arthritis is an illness were the immunity system attacks any part of the joints and the surrounding tissue of the joint.

    In earlier stages of Arthritis it can be difficult both for the doctor and pacient to understand what is happening. Swollen, tender and stiff joints combined with unusual tiredness can be present for months. Most often with RA, it is the smaller joints that are affected BUT larger joints can be affected too. Morning stiffness, morning tiredness, need for a lot of sleep, swollen joints, redness in jonts, pain with movement, aching are the most common symptoms with RA.

    What happens in the joint?
    When the immunity system attacks a joint and it's surroundings, you have a battle field with frequent attacks from your cells in your immunity system. Many cells from it follows, create a substance that respond with each other and destroys it's surroundings. The body then sends fluids to the joints to "repear" and the substance itself sends signals to the brain and gives it pain signals.
    This process means the joint becomes painful, swollen, functions less than normal, becomes loose and can eventually become totally STIFF. When that happens, there's nothing left to "attack" and many feel the pain goes away BUT then the reduction of the joint's function becomes a problem and can create pain again when the joint might be so destroyed it needs to be replaced.

    CORTISON - Slowing down the immunity system
    Cortisone is the strongest "break" on the immunity system as we know it. The cells in the immunity system are slowed down by Cortisone, the liberation of many substances in the body are slowed down, including histamine and allergic reactions.

    Cortisone is pain reducing and reduces feaver, too.
    It also have severe side effects when used over a long period of time. There is a debate going on about that but doctors in Norway do agree that when used in smaller doses than 10 mg, the side effects are not that severe as higher doses.
    (I've used 5 to 10 mg for 25 years and have had no Osteoporosis yet)

    The MOST important thing to remember when it comes to RA and "diet" is that it should be varied and contains the normal amount of vitamins, minerals and "fish" products. People who do not eat a lot of fish should take fish oil.
    Changes in your diet may reduce some of your problems with RA but it doesn't hae any effect on the illness itself. Be sceptic to all the commercial offers that usually can not perform what they promise it will.

    Eat meat, vegetables, fish, bread on a daily basis. Take vitamin c and b daily but be a little more careful with vitamin a and d. Take Ginseng or similar herbs if you feel tired and fatigued and feel free to take fish oil such as Omega 3. Fish oil has been tested and has shown a reduced release of cells in the immunity system.

    I have translated all of this from the Norwegian expert on RA/JRA, who also happens to be one of the doctors I have known since I was 10 years old. He is the number 1 expert here in Norway and sticks to facts only.

    As for what could increase your immunity system?
    I don't know. I do understand from Prof.Dr.Med. John Haga that even if medication reduces your immunity system's cells to attack your joints, vitamins/herb/minerals does NOT increase your cells attack. It may boost other cells in your immunity system but not the "RA bugs", as I call them :)

    Hope this has helped a little.
    I am copying this out to a new topic, in case someone else might want to read it :)
  9. 2BPainfree

    2BPainfree New Member

    What a wonderful "freind" you are!

    That must ahve taken SO long to translate and write for me...you are a Sweetie!! (Your english is Great!) I am going to sit down today and make a plan for myself. (If I can just stick to it!)

    Wonder what's up with my Rheum?? Saying not to take so many extra vits??

    I hope you are around more on the board, I would love to hear from you again! All your info was very interesting and informative!

    Thank you again!

    Susan B.
  10. dobegood

    dobegood New Member

    Just ask any questions you like.
    It didn't take me long to translate it.
    I write books and I write them in English.
    Some "LATIN" words are a bit difficult to
    translate, but hey! Good practice. Or is it practise?
    Never been eager enough to find out.
    I admit it, I am laaaaazy.
    And feel great being so. Hihi.

    Anyway, sorry to giggle but my boyfriend is coming tomorrow. Think the whole board knows by now. *lol*

    I am happy. Not just because of his arrival.
    Moreso, because of myself and the changes I've done
    within. Nothing religious or political, just emotional.
    Take a look at the profile and you'll find my address for my Homepage which tells you all about it, if you want to know.

    Warning though, not one word about RA or JRA in the Homepage :)
  11. karen2002

    karen2002 New Member

    I think that alot of the conventional docs---get a bit ruffled over supplementation.

    These docs who specialize cannot be versed in everything...nutrition and supplementation is not something they have time to venture off into--my gosh they probably have enough trouble keeping up with the advances in there own area of specialty, and treat the patient load, they are forced to undertake.
    I have had such good results with a specialist in fibro/cfs who treats with integrated medicine. He seems to have a grasp on such a wide area, which really suits my needs. I get my needed conventional meds (rx's) plus the nutritional advice, supplementation, and herbs. So far..so good!
    Best wishes,
    Karen

    Darn...forgot what I was going to say...geez..lol..
    I don't think if you stick to daily recommended values, and do some research, that you are going to do yourself in...with naturally occuring supplements. One of our biggest probs is lack of absorption and deficiencies usually. Of course nutrition is also, so important! [This Message was Edited on 12/19/2002]
  12. 2BPainfree

    2BPainfree New Member

    I am working hard tonight on my "inner" self to help the "outer" self...LOL!!

    This acceptance thing is tough, I still think "I can Beat it" is that the nurse in me?? Geezzz-Louise...

    I have decided to start with square one...my attitude and build from there. I will most definately get the supps going
    (I often don't have an appetite and get nauseated if I take the supps)...sooooo, I have to start working on my diet as well. I don't know if this is just a nurse thing or what, but I sure do neglect myself! Give it all away (what little there is to give anymore..sheesh!!)

    The other problem I worry constantly about is the constant pain med use....I feel like an addict!! Have tried but I just can't go without. This creates MUCHO guilt. Do you go though any of this?

    Karen you've been awsome answering so many of my posts lately, I really appreciate it!

    Susan B.

  13. dobegood

    dobegood New Member

    The last post of two different parts of our immunity system was interesting. I seem to remember reading there are SEVERAL different cells in our immunity system somewhere but I could be wrong.

    Give me some time and I'll check it out. Whatever I find, I will post here.

    Don't worry, it's no trouble. It is my own brain who works overtime at all times. I love to find things out. Not just about "sickness". Last night, I spent 4 hours trying to figure out the exact reason (chemical) why you end up with less potatoes for dinner IF you cut them to pieces before boiling them. What happens? Well, I found it out :)I knew the answer but I wanted the exact chemical reason.

    No wonder people call me a living dictionary!

    It's just me, I never said I was normal. Hehe.
  14. 2BPainfree

    2BPainfree New Member

    Love you guys!

    So nice to have freinds to relate to! I also love debating info back and forth....

    So glad we have each other AND this board!!

    Nite, Nite...see ya tomorrow

    Susan B.
  15. 2BPainfree

    2BPainfree New Member

    I probably wasn't very clear on the original post, but this is what I was curious about .....the theory of which things stimulates our immune system in a good way and which can over stimulate in a counter productive way....I'm so glad all of you have been interested in this (wasn't sure if I was making any sense!), it may be very helpful to alot of us experiancing multiple immune disorders such as Lupus, arthritis ect. to have more information on this subject.

    Any and all input/research would be a great thing!!

    Good-night!!

    Susan B
  16. dobegood

    dobegood New Member

    Well, I found a good article on what the immunity system IS but it will take me days to digest the thing and months to understand it :)

    The link is http://alan.kennedy.name/crohns/primer/immunsys.htm
    Not a commercial site.

    Although, I did understand enough to realise that there are more than just ONE immunity system. There are several parts of it and therefore, it is logical to believe that even if one part of my immunity system has lost the idea and attacks my own joints, other parts take care of the flue, cold etc.

    I read something else that was interesting, too.
    A Swedish professor has made some studies lately and he has come to the conclusion that FM has something to do with the immunity system, too.
    He believes it IS an auto-immune illness and will do more studies on the matter.
    52 % of the women with FM seemed to be allergic to "nickel", I believe the English word is?

    Anyway, hope it helps.
  17. 2BPainfree

    2BPainfree New Member

    And you're Jonny on the spot too!! What a combination! Can you share a little of that, ((LOL!))
    I'll be searching also. I'm surprised this isn't more of a "hot" topic here at the board?? Maybe it has been and I don't know it...heck I thought it was a dumb question to begin with!! (I WILL remember "NO questions are stupid!"....Funny I am usually saying that to everyone else...LOL!


    Have a Wonderful Day!!! I've decided to start today with a positive attitude...be happy and "LOOK" for all the exciting things around me....be in the moment!! (NOW....if I can just "Remember" to do that Everyday I'll be on a good start!! ((((Ha Ha!!))))

    Susan B.