Alternative treatments

Discussion in 'Fibromyalgia Main Forum' started by lou2, Mar 11, 2003.

  1. lou2

    lou2 New Member

    Hey all..
    Just a couple of questions for everyone. I haven't posted in a while so its quite long, so please excuse me !

    I find myself to be pretty pain free at the moment (touch wood).But i just can't seem to get anywhere with the chronic fatigue, I am still soo tired all the time and can sleep for so long and just still feel no more revived. I am of course glad that the pain has subsided and i guess in comparison to many i am recovering quickly, my doctor thinks it is as i am so young (22)...but still i am bored wiht being ill and not being at college and want to beat this...!
    So any tips for energy pick ups. I take all the vitamins, follow a strict anti candida diet and even sleep well(written my history in some other posts).... I think its the chronic tiredness that is sooo annoying, don't you??. Say i go out with my friends, the second i feel the tiniest bit tired, its straight home or i will get really dizzy and feel faint.

    Next thing:-
    For those of you who use alternative therapies, i.e homeopathy etc, what have you found to be the most effective?
    I see a homeopath which i find helps with some things and a cranial osteopath who i have seen for about 4 years , 3 years pre FMS/CFS.
    I have just had my first treatment of reiki healing which was pretty interesting and i am eager to see how this goes...i will let you know!
    So has anyone found much relief from acupuncture. This is one i haven't tried and i have heard it can help with energy levels, so had anyone tried it and found it helps?

    I am going to try everything until i beat this DD!!......
    Anyway you know what,.....i miss those days of staying up till 5am partying , drinking etc, and never being tired! how was that possible, i don't know!!
    big big hugs and a happy wednesday to y'all
    xx lou xx
  2. klutzo

    klutzo New Member

    I have FMS, not CFS, and cannot claim to know that much about CFS, but I did see something in your message that I thought I should respond to.
    The big clue to your fatigue, IMO, is when you said that you feel like you are going to faint.
    Have you been told that you have NMH, which is a common symptom in CFS patients? It stands for Neurally Mediated Hypotension,and can cause the symptoms you describe. If untreated, it can cause fatigue so bad that some folks have a hard time staying on their feet for any length of time at all.
    What it is, from the little I know about it, is that either your blood volume is low (likely if you have a Mitral valve Prolapse, also common in CFS/FMS), and/or your autonomic nervous system does not control your blood pressure properly. Either way, when you stand, your blood pools in he lower part of your body, your blood pressure drops, and you get dizzy and weak.
    I have a little bit of this problem, and have noticed that standing for long periods not only makes me woozy, but my feet and hands swell a bit and the skin looks all mottled. Are you having that?
    Natural treatments for this are to avoid standing for long periods without breaks, avoid heat, drink lots and lots of water all day long, and use salt liberally.
    Medications are drugs like Florinef...there may be others, and hopefully someone who knows more will come along and tell you.
    I believe NMH can be diagnosed by something called a tilt table test, but am not sure this is necessary for treatment to take place.
    You can do a websearch for NMH to find out more.
    Yes, I've tried every alternative therapy out there and have studied Naturopathy myself. I am part of the 14% of people who are immune to homeopathy, so I cannot comment on it. Accupuncture only made me very sleepy for about 45 mins. after each session and then I was right back where I started. I had 22 sessions before giving up. The thing that improved my energy the most was taking digestive enzymes at each meal, which is a good idea for anyone over 50 ,but you are so young, and ....
    I really do think this sounds like NMH...what do the rest of you think?
  3. tsj62301

    tsj62301 New Member

    I started accupuncture about 6 months ago and at first didn't feel like it was helping. then over christmas i missed 2 weeks in a row and had an extremely bad third week. It seems that it keeps my energy up and my symptoms down if I go every week. It doesn't cure it or make me feel normal but I notice when I have or haven't gone. And it realy gives me some time to lay there and be taken care of and think of nothing else but the energy running through my body.
    Good luck
  4. lou2

    lou2 New Member

    hey Klutzo
    I hadn't heard of NMH before but i am gonna go look it up now. Though i do know that my blood count was fine and my blood pressure is always good. I just assumed it is just that instead of getting normally tired, when i get tired i need to lie or sit down and straight away or i get heavy and dizzy. But then it is true that i really can't stand up for a long time without needing to sit. And this is definitely only since being ill, so it definitely comes as part of fms or cfs. But i will go investigate this NMH thing!
    Thanks for your input guys...
    And i think i may give actupuncture a try, may aswell try it all hey!
    x x x
  5. missymiss

    missymiss New Member

    Hiya, I know what you mean about the youth factor.. I'm 16 with CFS as well, so I find that some days I feel I'm recovering! When really I'm just having a good day. :)

    It is sooo annoying having to miss out on everything, like the parties and going out etc.. but I've found that when I do go out I end up having a panic attack later that night and sometimes end up in A&E!!!

    I do have one tip for energy boost and that's Shiatsu therapy. It is WONDERFUL!! It's like acupuncture without the needles. The practicioner puts pressure on certain points of the body and it re-directs all your energies. Its amazingly relaxing, and afterwards you feel full of energy for about a week!! I seriously recommend it!!

    Take care
  6. lou2

    lou2 New Member

    being young with this officially sucks. I hate this feeling of just hanging around wasting time. Yet i realise how important it is to put health number one!...
    i hear you on the panic attacks too,...i used to suffer really badly but have been better until this last week. i took a trip to paris and had a really bad one on the eurostar , i think the trip was prpbably just a bit too much. I am going to get some anxiety manegement classes aswell to see if that helps. I think you an't help but feel anxious when your body is doing so many crazy crazy things.

    Anyway i am sad to hear you are only 16, i thought i was young. Where are you from? I live in Worcetser UK, i am at college in London but i deferred this year and hopefully (fingers crossed)will go back in october ...but apparently youth is on our side, my doctor thinks we recover much more quickly being younger so there is some hope!
    i am gonna see if i can find some shiatsu therapy around here somewhere... feel free to email me with anything!
    take care, lou
  7. AnnetteP

    AnnetteP New Member

    I see an integrative dr. and my CFS has been greatly reduced. The things I take which help with fatigue are CoQ10, alpha lipoic acid, iron, Armour, and Cytomel. Of those listed, THE most important things are the thyroid pills, with an emphasis on Cytomel.

    For the past year we've played around with the doses and when I thought I had just gotten it right, I started napping daily UGH! I did blood work last week and get the results in a couple of weeks. I would bet you ANYTHING my T3 is too low. So, on my own I have upped my dose (just since yesterday, so its too early to tell a difference), because once you are on enough T3 you know when you are the slightest bit off. Everytime I've felt fatigued again, my tests reveal a deficiency.

    Hope this helps,


    I wanted to add that when I did the candida diet, over two years ago, I felt better in some areas, but not with fatigue. Eventually I learned that I needed to reduce my carb intake, even though I was eating "healthy" carbs. My food choices make a BIG difference with my energy level. Dr. Atkins does a good job of explaining the impact of excessive carbs and he helps you calculate which amount is best for YOUR own body.
    [This Message was Edited on 03/12/2003]
  8. healing

    healing New Member

    I have a hard time with traditional meds, although I do take a few (Neurontin, Allegra, and hormones). Most pain killers destroy my stomach, and many drugs build up in my system. So I've turned to homeopathics and herbals under my doctor's supervision.

    If you click on my monikker, you can search my emails for a COMPLETE listing of what I take. I recall one time I typed in the ingredients from all the bottles -- no easy task for someone with fibrovision, so I'm not eager to do it again.

    I take grapefruit seed extract for candida.
    I take the following for my immune system: Astra Essence herbal, Galium Compositum homeopathic.
    I take something called Quiet Contemplative (herbal) to calm and strengthen my system.
    DHEA helps with energy level (lots).
    Hepeel helps with digestive problems.
    Rhus Tox homeopathic deals with the pain pretty well.

    One thing that helps my energy level so much -- it's like lots of caffeine in the way it affects my system -- is AAngamik DMG (Dimethylglycine), a homeopathic. My doc thought it would help oxygenate my tissues. It gives *me* a speed-like reaction, so I'm careful about when I take it. But it does give me a "push" when I need it. I got it, brand specific, over the web.

    I am a Reiki practitioner. I believe in this treatment when it is given properly, prayerfully and lovingly. Because it is gentle and non-invasive, and because it can be so healing, it is a perfect treatment for those of us who are sensitive to touch.

    I also receive regular acupuncture and myofascial release treatments. These modalities do a lot to alleviate my pain and allow me to continue to function in the world.

    I genuinely believe that I would be retired on disability if it were not for these treatments. All the best to you as you begin this new phase of your journey.
  9. lou2

    lou2 New Member

    Thanks for all the imput guys...
    - just out of interest Annette, did you start taking thyroid pills knowing that you had a thyroid problem, or juston the advice of your doctor?. I have heard that many people find help form thyroid medication even if their results are normal. I had all mine checked which were fine though i did have positive antibodies which apaently means i need to get it checked each year as these could affect the other levels.
    I also have a magnesium, iron and selinium deficiency and ahve been dosing up on those and am eager to see if th results are up yet....

    Also i really want to try this noni juice but its made of fruit right and on this anti candida diet i cant have fruit (except apples, kiwis and pears) so i think id better check with my doc if i can have it!

    I am gonna get back to my homeopath next week and see if she can get my energy levels up and about too, and hopefully the reiki will help loads...

    anyway thanks again, all this input is really useful. have a good thursday.... lou x
  10. AnnetteP

    AnnetteP New Member

    I was diagosed with hypothyroidism nearly 10 years ago. Even though I was on synthroid for all those years I never felt any improvement and I eventually got worse. During this time I saw several dr.s who ran thyroid tests on me, and none of them ran the types of tests my current dr. runs, not even the endo!

    I, too, have hashimoto's and never knew that, til I found my current dr. There is a big problem with low thyroid in FM/CFS and its often undiagnosed or undertreated (which was the case with me). Most dr.s run only a few types of the many tests available and then they use "acceptable ranges" which are antiquated. Its believed there are more people with undiagnosed hypothyroidism than there are people with diagnosed hypothyroidism!!!!

    I became educated on the subject, by reading whatever I could find on the subject, then I searched for a dr. who goes beyond the traditional tests and the traditional values. Did you know that most people with Hashimoto's have normal test values? By that I mean normal on the basic tests these doctors order. However, if they go beyond that and order some other tests its surprising how many are deficient. One other thing, if you can find a dr. to run every thryoid test available, your problem isn't necessarily solved, because the value of the test results lies only in the ability of the dr. to interpret them, and many still rely on outdated, ineffective values.

    For me, changing thyroid types has made all the difference. No one ever bothered to check my T3, free and T3, uptake, for example. If they had they would have have put me on T3 since synthroid has no T3. I do not adequately convert T4 to T3, so no matter how much T4 I take, I will still be fatigued! The T3 has made all the difference in my energy levels.

    If you aren't familiar with Mary Shomon's thyroid site please check-it out. Its the leading site on the net for thyroid problems. Also, Dr. Lowe's site is another good one for FM-thyroid connections. And last, my favorite book, "Thyroid Power," which was recommended on Mary's site, is a must-have.

    Hope this helps,


    I have used so many types of alternative therapies I can't remember them all. While each had its own purpose, other than what I mentioned before, the one thing that has positively affected my energy level is light therapy, which is a light set for certain frequencies. In my case, I had a mycoplasma infection and a bacterial infection. Because I knew their names the therapist set the proper frequencies for these two strains so I was able to get the fastest results (he didn't have to play around with the frequencies in an effort to determine what I needed).

    Something else I tried just once was a PAP-IMI machine; I didn't notice an improvement, but at the time my thyroid was too low so nothing outside of a pill was going to help me. Plus, they say it takes several treatments before you notice anything, but it was so costly I figured if I still felt fatigued after my next dr. visit (where she would review my lab work and increase my thyroid meds) then I would give it another try. Thankfully, my dr. saw the negative effects of the lowered dose and raised it enough to bring me back to normal.