Anything helping for CFS.....the fatigue is unrelenting

Discussion in 'Fibromyalgia Main Forum' started by seaview7, Oct 12, 2005.

  1. seaview7

    seaview7 New Member

    I have been diagnosed with FM/CFS,degeberative disc disease in neck and back.I recently got the Chrohns diagnosis.I have been seeing a pain doctor for a year....lots of injections for pain but nothing for CFS. The Chrohns is also kicking me in the but...literally.I have been put on several meds for that. What I want to know is if there is anything that helps with the fatigue. I have 5 kids.My youngest are 6 and10. I feel like I am of no use to them.I can hardly stay on my feet 10 minutes or so.I have to take a nap every day.and so on...so frustrating.My older boys seem obliviuos since my health has been a problem for so long. Any ideas would be so appreaciated. I am at my end with these fatigue/exhaustion.....
    Thank you for your time,
    kathleen
  2. skychomper

    skychomper Member

    my heart goes out to you, obviously you are going through a rough time...
    my rec for you would be B12, there is a post on the board about methyl b12 and how it has helped people, it w as a huge miracle worker for me...i was housebound for months and years at a time and at my end too, when I started the b12. it gave me my energy back, my alertness back, and helped me sleep better too...I can work full time now and have a life, so I highly recommend it.
    good luck, hang in there!
    skychomper
  3. kbak

    kbak Member

    I am so sorry your having such a hard time! I'm taking raw adrenal glandulars, and licorice, and ginko. You can get these from a health food store or online. These really help with the fatigue.

    Of course anyone with kid's has a much larger hill to climb. Since I don't have any kids at home I can't offer any helpful advice in that area.

    Anyone with Chrohns should have a big diet change. I use to have very severe IBS, so I know what living in the bathroom is like. If you haven't already, you should introduce bran into your diet. Slowly at first to ajust to it. You want to switch to a whole grain diet. No dairy with this condition. No coffee. No high citrus fruits. No onions or cabbage. No pop. You need very badly a good probiotic. Lots of good bacteria back into the gut. Low sugar in the diet.

    This isn't something you just adopt overnite, but should work into. Diet can make a huge difference in how your body functions. I still struggle with the CFS, but I'm literally cured of the IBS with my diet.

    I hope you get lots of good idea's from people with kids, to deal with the CFS and raising kids. I pray there's better day's ahead for you!

  4. kalaya

    kalaya New Member

    Siberian ginseng can potentialy help,it has helped me and if you want to try something stronger you can try Modafinil which you will need a doctors prescription for or Adderall.If you do use B-12 lozenges make sure that they have magnesium sterate and sorbital with it so that the B-12 can be drawn into the intestines.Take atleast 3000mcg 3 times per week.God bless.
  5. rockgor

    rockgor Well-Known Member

    What is methyl B12? I have been taking Vitamin B 12 an 6 under the tongue for a couple weeks. Hasn't done anything so far. Also B5.

    Have had CFS for 25 years. The last few years I was able to work about 2 hours a day. Keep looking for some kind of magic bullet, but haven't found anything to give me some pep.

    Has anyone tried B12 injections at home?
  6. jfrustrated

    jfrustrated New Member

    If only I could suggest something that would definitely work. I do not know how you cope. You must be very strong. Five kids! There are times when I cannot cope with my cat!!! One thing does help and that is pure and long term rest, but obviously it is not an option for you. I can just go to bed for 48 hours before I have to do something, but you can't. Could someone take them on "holiday' for a day or so, so you could just lie down and rest??? Remember, your children are your children: their love for you does not depend on what you do for them but for who you are. Take time to focus on yourself so that you "are."
  7. alaska3355

    alaska3355 New Member

    We have been doing these twice a week on our son at home. Our doc showed us how to do it, and I think they are helping with his fatigue level....he's waking up with less brain fog than he used to. He's looking for part-time work this week. That's good news!
  8. Dee50

    Dee50 New Member

    I'm learning stress reducing skills to reduce my fatigue. Now I'm learning to give clues to my family members about things before I get stress out about the deal.
    I'm doing this so I do not get mad about anything because when I get mad it uses to much energy and then I'm even more fatigued. I'm learning how to read my own bodies stress messages. It is not easy for me be I'm trying!lol
    The only other thing that helps me is a deep deep sleep.
    Dee50
  9. springrose22

    springrose22 New Member

    When you use the word fatigue, do you mean "tired". That's what I always thought the word meant. I have CFS, and don't like the 'f' word at all!!! That was a terrible name to give to such a debilitating and complex disease. When people ask me if I am still fatigued, I always reply, I'm not fatigued, I'm sick. I feel like I have the flu 24/7, for months now. Did you know that if you keep going and going you could get much worse, and eventually bed bound? Of course, when you have children and other responsibilities, it's hard to REST, that's why we have to educate our families, our friends, and the MEDICAL COMMUNITY about this disease, and the latter job is a tough one indeed. Please see "a hummingbirdsguide.com" and look under treatment. You will see the single most important treatment so far is REST. Speaking from experience as well. Love you all. It's tough, I know. Marie
  10. Muddieanne

    Muddieanne New Member

    B12 didn't work for me but Provigil does. I take so many meds for problems that go with fibro&CFS that I hesitated to take another one,but Provigil has given me a life. I go out more&have more energy to do more than one thing a day.

    I have IBS&take those meds&have herniated lumbar disc w/nerve impingement&had epidurals for that,which didn't help.

    Your situation is difficult because your kids are young.

    I hope you find something that helps.I know we get discouraged because it seems so hit or miss. There isn't just one thing that works for all of us.

    Keep trying. Marie
  11. rt6176

    rt6176 New Member

    Kathleen,

    I have CFS in the worst way.

    I found out only last week that I have food allergies that have been causing brain fog, my heart thudding as it beats, and severe muscle weakness and fatigue.

    Full Allergy tests will be done next week. I have been living with this for ten years.

    I have begun an elimation diet to help sort this out.

    so far I am allergic to: Corn, Chicken, olive oil, peanuts, breads (Yeast), and lima beans.

    Its only been one week. As soon as I feel good I try something else.
    Each bad reaction lasts about 18 hours.

    I just took the lima beans and my heart is thumping away. :(

    PUTTS!!!!

    So, Do you think you may have similar issues?

    It may tie in to your IBS situation also.

    Good Luck,

    RJay

    P.S. My naturalpath doctor just put me on Grapeseed Extract to reduce the symptoms and promote gut healing.

    [This Message was Edited on 10/14/2005]
    [This Message was Edited on 10/14/2005]
  12. Kay31

    Kay31 Member

    I've tried everything from B12 shots to you name it.

    Provigial does give you a boost. Try a low dosage and see if it helps.
  13. NyroFan

    NyroFan New Member

    Seaview7:

    My doctor has insisted on a daily exercise program. He gave me some literature and I guess I can do it.
    He believes us CFS-ers must exercise and keep moving or we'll get worse.

    Just his opinion, though.

    Hugs,
    NyroFan
  14. skychomper

    skychomper Member

    hi sorry, this is way late. I don't come to the board too often

    Methyl B12 is just another form of B12. I think because it has a methyl group in its composition it is able to do a little more for your body than just the other stuff. ed sharpe wrote the following and I found it on the internet.

    Methylcobalamin and Cyanocobalamin

    When most of us think of vitamin B12, the molecule we really have in mind is cyanocobalamin or cyano B12. As its name suggests, cyano B12 has a cyanide group (CN) attached, whereas methyl B12 carries a methyl group (CH3) instead. Very little of the body's natural B12 is in the cyano form under normal circumstances; exceptions are in cases of cyanide poisoning or chronic smoking, both of which can raise cyanocobalamin levels. The fact that most of our vitamin pills contain cyano rather than methyl B12 is largely an accident of history, the result of using charcoal to filter extracts during the isolation of B12. Unknown to the early researchers who first isolated B12, the traces of cyanide present in such charcoal rapidly convert all natural forms of B12, including methyl B12 into the more stable cyano form. As a result, the discovery of the B12 coenzymes and their metabolic role was delayed for years.

    Whenever we swallow a conventional vitamin pill, any cyano B12 present gets carried along and absorbed by an intricate "bucket brigade" of B12-binding proteins. Operating in the stomach and small intestine, this transport system provides a very efficient mechanism for absorbing a few micrograms of B12, yet is quickly swamped by anything larger. As a result, only about 1% of a large oral dose of any form of B12 usually makes it into the bloodstream. Fortunately, we can bypass intestinal absorption entirely by giving B12 by injection or sublingually. In particular, sublingual administration is a simple and effective way of substantially raising blood levels by absorbing B12 through the oral mucosa. It's also unquestionably the most convenient way to take B12, especially for people taking supplements on a daily basis.

    So let's say we've taken a sublingual tablet and a significant amount of B12 shows up in the bloodstream. End of story? Not if it's cyano B12. Most of the B12 naturally circulating in the blood plasma is in the methyl form. Before cyano B12 can join this metabolic pool and be properly utilized by the body, it has to be stripped of its cyano group and 'reduced' (i.e., made to gain electrons) in a time-consuming, multi-step process14. The result of all this processing is a B12 molecule with its cobalt ion reduced from the +3 to the +1 oxidation state, ready to take on a methyl group and be distributed throughout the body as methyl B12.

    It should be obvious that there are certain advantages inherent in taking methyl B12 as a supplement, versus 'ordinary' B12. For one thing, methyl B12 doesn't have to engage the body's resources to convert it into coenzyme form, it's already there. Even more important is the fact that methylcobalamin is the most highly reduced form of vitamin B12 possible; this makes methyl B12 a very potent reducing agent (antioxidant) indeed. In a body undergoing oxidative stress÷for example, from a disease process or from a diet deficient in antioxidants, it's possible that methyl B12 production can become impaired. A similar derangement in the cellular synthesis of adenosyl B12 (another reduced coenzyme form of B12, into which methyl B12 can be converted) is already known to occur in association with vitamin E deficiency15. So it makes sense to consume B12 in a form in which it's already metabolically active and maximally reduced, and thereby put less of a strain on our bodies' antioxidative capacity.


    so thats that I guess. I do do the injections at home. they have been a miracle for me...I am working full time and feel good. not 100% but 85% on most days, way better than the 20% of cfs.
    [This Message was Edited on 06/15/2006]
  15. ulala

    ulala New Member

    injections every day? In the muscle? Years ago I had a doctor who would give me a "push of B12 and magnesium in my vein. It was the one thing that helped me the most.

    I have yet to find any doctor now who does that. I guess I should start looking again!

    Have you ever had the B12 in your vein? For me it was a cure for several days.
  16. painandagony

    painandagony New Member

    I have tried everything the other people have posted, i.e. b12, provigil, stress reduction, allergy reduction, exercise, blah, blah blah blah blah and nothing helps me with my exhaustive fatigue. I am so tired all the time and not one thing helps. You name it, I've tried it. I just hope you have better luck than me.

    hugs and more hugs
  17. Marta608

    Marta608 Member

    .... is magnesium with malic acid as well as extra vitamin D. (Two different supplements) I feel less stress and more able to focus.

    I'd taken magnesium forever but it's the malic acid that seems to be helping most, or the combination. Most of us don't get nearly enough D.

    Also, many people here don't want to hear it but altering our diet is enormously helpful. Our bodies know how to heal, we need to give them the tools which the standard American diet does not anymore.

    Marta
  18. skychomper

    skychomper Member

    Hi Ulala,

    I take the B12 about once every two weeks. My script says I can take it every 2-3 days but it is usually more like once every 2 weeks. I inject it into my muscle in my upper leg, I guess the side of my thigh would be accurate. I think I had b12 in my vein in a drip once and it perked me up a bit. It has been a huge lifesaver for me. Extremely helpful.
    skychomper
  19. Michelle_NZ

    Michelle_NZ New Member

    Hi seaview

    I've been doing some things in teh last 3 months that I think have helped improve my fatigue and exhaustion levels. I was only able to stand for 5 mins at at time, often having to rest after my shower before putting my clothes on... I am MUCH better than that now.


    This is what I added:
    - Fish Oil 3 x day
    - EPO 3 x day
    - Vit E (it helps with the fish oil being used properly)
    - Licorice (in the morning only, it stimulates adrenals)
    - CoQ10
    - Lots of sea salt (if you have low BP)

    There are lots of other things I do, but these are the ones that I think have helped in the last few months. I've only started seening the improvements in the last few weeks, so give it a few months before deciding whether its working or not.

    Take care
    Michelle