Extreme Weakness - Like Going into Shock -- Ideas?

Discussion in 'Fibromyalgia Main Forum' started by bretzie, Aug 21, 2013.

  1. bretzie

    bretzie Member

    I have CFS but no fibro. All along I've had incredible weakness but it's gotten worse to the point where it often feels like I'm going to go into shock/faint. I've tried many things (D-Ribose, Rosacea, Enada NADH, on and on). :oops: Nothing helps. I don't have OI.

    Anyone have any ideas or experience with this kind of horrible weakness.

    I'm going to have my adrenals looked into soon with a good kinesiologist I also have reverse sleep, some digestive issues.

    Thanks ;)
  2. bretzie

    bretzie Member

    Ooops forgot to put in "watch this thread."
  3. Soul*

    Soul* Well-Known Member

    Hi Bretzie, I also have CFS and no Fibro.

    I do recognize the extreme weakness and fainting part though luckily I don't have it to often. I had extensive blood tests done but nothing showed up in them.

    Passing out for me usually is combined with a shower or bath and probably has to do with the change in temperature. I've made some nasty falls before that luckily ended up with only being bruised all over.

    The last time I actually blacked out without a warning, that was quite scary and could have ended up real bad since judging from the bruises I made a real nasty fall in which I could have easily broken my back or neck. Now I always make sure to have my cellphone around on ground level if I take a shower or bath. And I have some kind of alert system with a family member in case something does go wrong. If I feel weak and really need to shower I email before hand and let them know I will email back when I left the shower.

    I usually see it coming in time to go lay down wherever I am at that moment until it passes. I've had this in a store too when I had to go further then the 1/3 of a mile that is my limit to go once or twice a week. I don't remember if it was a hot day in a cool store but going beyond my limit does increase the dizzy and faintingness...

    I also have digestive issues, don't know if they are related. I do make sure to drink some water and eat something salty before I go and take a shower or bath.
  4. hangininthere

    hangininthere Well-Known Member

    I have extreme weakness from CFS and Othostatic Intolerance too, it's all in my profile how weak I am. I'm bedridden because of it.

    In recent months, I've had a marked improvement by taking DHEA capsules and using hydrocortisone cream. DHEA helps the adrenals rebuild themselves I've read, if I'm remembering right. I suspect I have had adrenal fatigue for over a decade, which also caused me to go bedridden.

    I take an over the counter lower dose DHEA capsule once daily - 25 mg. - for a few weeks then take a break for a week or more, since I need breaks from most supplements, so as not to lose the effect or develop side-effects.

    I don't have access to a state-of-the-art doctor who could prescribe me hydrocortisone pills, so I use the over the counter cream.

    I rub a half-inch glob from the tube into my lower arms so it will soak in. It works instantly for when I need the strength to bathe. I rub it in about 15 minutes before.

    I had to go to baths a decade ago because I lost the strength to stand up in shower like I like, because of the orthostatic intolerance that hit me.

    I accidentally discovered that when I use the hydorcortisone cream, it strengthens me. Suddenly I could take a quick shower instead of bath. This is a huge improvement for me.

    Then I tried the DHEA a year later, in recent months, and it strengthens me a bit more. It helps me not to feel as lightheaded and faint about to die feeling.

    Still bedridden and use a wheelchair when out, but less faint. Even sitting up in wheelchair is very hard, but less faint. I have a reclining wheelchair I use for waiting rooms, since I can't sit up for long.

    These are subtle improvements to anyone else, but to me they're huge.

    I am now less lightheaded and faint when I have to get up, such as going to use the bathroom and back, or dragging myself to kitchen very occasionally to cook or bake. It's in my profile how I manage getting something done in the kitchen once in a great while.

    I use the hydrocortisone cream judiciously, only once about once a week when I need to get up for a shower and go, it's in my profile how often I can get out and go, which is once a week with extreme effort. I use it only once in a while for an instant boost, because I don't want it to build up in me and back-fire - build up in me too much or get side-effects.

    Worth a try. That would be wonderful if it helps you and others as it has me. A subtle improvement, yet huge all the same.

  5. mbofov

    mbofov Active Member

    It could absolutely be your adrenals. Many years ago I was weak as a kitten and stumbled across a chiropractor who did muscle testing and in a few minutes he'd found my weak adrenals. He gave me drenatrophin PMG by Standard Process - I had to take 3 to 4 times the usual dose because I was so weak - and within 2 days my energy started to come back. I took it for several months and off and on ever since.

    I'd stay away from hydrocortisone cream if possible, it's a steroid. My chiro explained that adrenal glandulars give the adrenals a rest so they can heal, whereas cortisone just pushes them to work even harder.

    Get your adrenals checked out right away. Also, I'm sure you know to avoid alcohol, sugar and caffeine which are all very hard on the adrenals. extra pantothenic acid is very important for adrenal health. And meditation is fabulous for dealing with stress.

    Good luck!

  6. mbofov

    mbofov Active Member

    Patti - have you ever used an adrenal glandular? They have helped me so much with weak adrenals, see my post above. It might get you off the hydrocortisone cream and just give you more energy over all.

  7. hangininthere

    hangininthere Well-Known Member

    Thanks Mary. Was just gonna post to you with a question about adrenal glandular, then saw your timely post to me. I had forgotten at the moment when I posted above, I have some here I haven't tried yet.

    A month ago I bought some Adrenal Complex capsules and have been afraid to try them yet. Have been waiting til my busy past few weeks are over, which will be by this coming week - was afraid I'd get an 'adrenaline rush' in a bad way, or other bad reaction like I get with so many supplements, and needed to function. Am anxious to try them, and hoping for great improvement.

    I bought this:

    Vitacost brand - Adrenal Complex

    The ingredients in mine are:

    Adrenal Cortex Substance (bovine) 250 mg.

    Multi-Glandular Complex Blend (blend of bovine liver, lung, pancreas, heart, kidney and spleen) 100 mg.

    P.S. I better go back and edit out where I said hydrocortisone helps build up adrenals. It's actually just a quick boost that further depletes adrenals. Thanks for correction.

    That will be fantastic if the Adrenal Complex works on me and I can quit needing that boost from hydrocortisone.

    I'll report back how I do on it in a couple of weeks.

    I've read that adrenal glandular is to be used short-term, like you said, to give your adrenals a rest and time to rebuild themselves. It shouldn't be used long-term, because then the adrenals become dependent on it and won't function fully by themselves anymore. Like you said - use them off and on as needed.

  8. mbofov

    mbofov Active Member

    Hi Patti - I hope the Vitacost product helps you. I've never used that brand. It was extremely helpful for me to get the muscle testing done by a chiropractor for three reasons: (1) the testing indicated that my adrenals were weak (and also it helped me with several other problems over the years, including several digestive ones); (2) it indicated that Drenatrophin was the right thing to take - again, I don't know how good the Vitacost supplement is; and (3) it indicated the dosage I needed. I am pretty sure that if I tried to take an adrenal glandular on my own, I probably would not have gotten the dosage correct, and may not have gotten a good product either.

    So I'd suggest trying the Vitacost supplement but if it doesn't help, to look into muscle testing. If you go to the Standard Process website and contact customer service (you can just call them), they'll give you the names of practitioners in your area who use their products.

    Good luck! I really hope the Adrenal Complex helps you. Keep us posted -

  9. hangininthere

    hangininthere Well-Known Member

    Thanks, Mary.

    My state Medicaid won't even pay for a Vitamin D test. In other words, my insurance is way behind the times, as so many mainstream docs are to this day.

    So I'm really stuck with trying remedies on my own hit or miss. So thankful for this support group to get ideas of things to try, whew.

  10. mbofov

    mbofov Active Member

    Hi Patti - no insurance paid for me to see the chiro, it was out-of-pocket. I'm so glad I spent the money though - It was $50 to see him. You've been so weak and so sick, it might be worth it to give muscle testing by a chiro a try, if at all possible.

    I do have Medicare because I'm on SSDI but even with that, most of what I do is on my own, not through a doctor, because the doctors don't know anything about CFS. They don't even believe it's real. Yeah, like you, I am very grateful for this support group and the internet in general! I would have been lost without it - take care -

  11. bretzie

    bretzie Member

    Hi Soul,

    Thankfully I don't black out or fall, just extreme anguish with this weakness. Glad you have family to be supportive. Hope you feel better.

  12. bretzie

    bretzie Member

    Hi Patti,

    I'm sorry you have OI and weakness. Bedridden - very sorry about that. I've heard that DHEA needs to be monitored via blood tests, so hope you can get that done. DHEA didn't do squat for me.

    I'm going to a very good kinesiologist who takes Medicare after the first $47 visit. Very experienced in adrenal fatigue. Right now the problem is enough energy to get there. An hour bus ride. I was thinking of taking Adrenal Cortex Formula or Adrenal Fractions from Integrative Therapeutics just to get me there. Both have bovine extracts over 200mg. HATE that I have to use non vegetarian help.

    I don't know where you live, but see if you have any kinesiologists there? They're usually not as expensive as MD's and (in my opinion) more skilled as they use muscle strength testing. I agree with Mary that using hydrocortisone is probably not the best thing. I hope you can get more help financially and medically so you can pull out of this. Check out kinesiologists as they could be the key.


  13. bretzie

    bretzie Member

    Hi Mary,

    Yes, I was pretty sure adrenals were the issue. Wonderful chiro's/kinesiologists who do muscle testing. Amazing that in a few days after Drenatrophin PMG your energy started returning. :)

    I'm getting my adrenals tested at a kinesiologist I know of via saliva test. He's very highly regarded, very reasonable just not nearby (1 hour by bus). I need some energy (ironic huh?) to GET TO HIM.

    I'm going to ask if he can recommend something to take now, so I can have some energy to get to him. If he feel it's not ethical, I'll try the Adrenal Complex by Integrated Therapeutics. Pantothenic Acid OK!

    Meditation is something I find very hard, but have done it in the past, so will keep trying.
    Thanks very much for your input.

  14. Soul*

    Soul* Well-Known Member

    Denise and Mary, meditation is my sanity life line :p

    As with medication you also need to find a way of meditation that works for you, since everyone is unique and different.

    The one I practice is a very down to earth open eyed one (comes in oh so handy in day to day life when I usually need to keep my eyes open LOL) It has done me a lot of good and I like that it gives a lot of room to personalize to your own needs.
    It's offered as a free community service worldwide and they also have an online course that has a lot of guided meditations and examples and such which are especially helpful when I'm overwhelmed with things and have a hard time focusing. Before I started it I was afraid of heights and couldn't even stand on the side of a pool without getting dizzy. It has helped me to become more balanced, both in my body and in overcoming other fears too.

    Good luck in getting the proper help that works out well for you!

    Patti I hear you on the cost for bloodworks and such. I had a detailed test done too and thought it was covered by insurance only to get a nice bill half a year later or so. It's not easy to keep up with everything and know what is and isn't covered.
  15. mbofov

    mbofov Active Member

    Hi Denise - yes, it is ironic that you need to get energy, just to get to someone who hopefully will help you get energy! I'm guessing the saliva test might be the Adrenal Stress Index test, it's a saliva test which measures cortisol levels 4 times during the day/evening. It's a good test, I've had it done. But what my chiro did was actual muscle testing, and my adrenals were so weak, showed up right away. It was amazing about the Drenatrophin - it was like a godsend. No doctor had ever talked to me about weak adrenals. One gave me Prozac (!) for some reason which I only took a couple of days, and hated it so stopped.

    Good luck with this all and keep us posted!

  16. mbofov

    mbofov Active Member

    Soul - the website looks interesting - thanks for posting! Meditation does help keep me sane. Before I started doing it, I literally did not know that you could stop the ceaseless mind chatter. My mind was always going, always trying to solve problems, thinking, thinking, thinking, arggg!

    For people who say it's hard, it's not really. You just have to do it regularly. It's like if you began an exercise course and after one day said, this isn't working - my muscles look no different, I haven't increased my strength. I think people expect their mind to get quiet after one or 2 sessions. It doesn't work that way. I think you're lucky if you get a few seconds of quiet in the first several sessions. But regular daily practice will yield results. After a month or even two weeks, you'll find it's easier, your mind will get quieter for longer periods of time.

    I got started meditating after reading The Relaxation Response by Herbert Benson, very easy interesting read.

  17. Soul*

    Soul* Well-Known Member

    Mary what you described is exactly what made me start on meditation too. I came across a leaflet in the library back then and the line that struck me was that if it are my thoughts then I should be able to steer them in the direction I want just like my hands don't just move without me moving them. That made so much sense to me that I wanted to know more about it. And am I glad I did. I used to be kind of a thundercloud not seeing much good in life and that was in my healthy years even o_O My thoughts where pretty much in my way and I wasn't particularly being a good friend to myself back then... Even though I was way healthier back then I wouldn't want to go back to that if it would make me feel the way I felt then.
  18. mbofov

    mbofov Active Member

    Soul - yep, my thoughts too were just not very good many years ago. I really didn't know who I was. EMDR therapy helped a lot, and meditation is extremely helpful too.

    I was thinking about what Denise said about finding meditation very hard, and realized she is right, in a way - it is very difficult to quiet our minds. But, it's a paradox (I think that's the right word!) - the harder you try, the harder it will be. You just have to accept that your mind is racing, and keep accepting, over and over again, and don't fight or struggle, and eventually it will start to quiet down. So the hard part is actually learning not to try, I think. Letting go over and over and over again. That's all. And not beat yourself up or get upset when you find your mind trying to solve world problems or fix the leaky sink - you just let go again, just observe and let go. And there are all sorts of techniques for meditation - there's the link you posted, The Relaxation Response by Benson which has a very simple technique, and so on. For me, the simpler the better.

  19. hangininthere

    hangininthere Well-Known Member

    Thanks All for your comments and support and advice.

    Turns out they don't take my insurance, but I was so excited at first to find a chiropractor kinesiologist who does muscle testing just seven miles from my house which is do-able for me on the back roads. Drat.

    I'm lucky that when I asked for a Vitamin D test, the doctor said that patients have been getting a huge surprise bill for that blood test and asked me "Do you want that bill?" I said "No way!" Glad she was on to that, whew.

    I'll try my adrenal glandular soon.

    I have to take a break from the DHEA - took it for a couple or three weeks straight and then yesterday started feeling that toxic sicky feeling all over - side-effect, even though it continues to strengthen me. I suspect my liver is a slow metabolizer and meds build up too much in me and need a break to clear my liver. Works for me - taking the breaks from certain meds as needed.

    Now taking one charcoal capsule a day for a few days to get rid of the toxin build-up. Charcoal helps that all over sick feeling and malaise and worse brain-fog from the malaise, and CFS achiness from the toxin build-up. I recommend charcoal to help you feel better.

    Aspirin also helps the malaise and brain-fog from CFS inflammation. Good old aspirin is a great anti-inflammatory that helps me when taken as needed. Aspirin also helps the CFS flu-like pain - it doesn't help the throbbing pain when I've overdone - but it helps the regular pain when I haven't overdone.

    Your explanations of meditation have gotten me interested as never before. Didn't think I could do it with my Attention Deficit Disorder. Will check out the websites cited and give it a try sometime. Will consider a tiny baby step - a small increment of even just a few seconds of clearing my mind of its continuous racing thoughts- as a success and not give up so fast, not try too hard. Great explanation for success.

    The only thing I've mastered pretty well is 'stop-thought' when I'm reliving bad memories. That has been a big help.

    Plus I do the EMDR eye movements to re-shuffle the bad memories back to where they belong - in the background not foreground - when reliving them. It works instantly when I remember to do it. Just the rapid side-to-side eye movements work for me, thankfully.

    I also take high-dose garlic capsules or Pau d' Arco - alternately - as a powerful antibiotic/antifungal. I'm one who feels better on antibiotics. I assume because I have 'stealth infections' as discussed here on PH years ago, which of course make you feel sicker. When I go without the garlic or Pau d' Arco I feel worse malaise and brain-fog.

    Plus acidophilus to replace the good bacteria that the garlic and Pau d' Arco destroy along with the bad.

    Grapeseed capsules have improved my stamina too.

    Kelp pills for iodine strengthened me when I took them, but had to discontinue because I'm now on a diabetes medicine that you can't take iodine with. Iodine is good for boosting an underactive thyroid.

    High-dose magnesium capsules make me feel better in several ways - 1,000 mg. a day as needed. Gives me better sleep and relieves my what I assume is sleep apnea - waking up from a gasp. Wake up more alert instead of laying there for hours in a daze. Helps CFS pain a lot when I overdo. Good for depression too. And calming to me.

    And for pain and malaise, a Chi Swing machine is good for the bedridden because you can use it laying down in bed and it does the work for you without you having to move a muscle. It helps get the lymph fluids moving like they're supposed to, to clean up toxins. When I get so exhausted and in pain that I'm despairing, I do the Chi Swing. I should do it every day, but too tired to. I'm not disciplined enough to keep a steady schedule. That's another reason I've never tried meditation, because I'll just forget to do it regularly.

    Which reminds me - breathe. I'm a shallow breather and hold my breath all the time from being tense every waking moment and forget to breathe. When I remember to just breathe, I immediately feel so much better physically and mentally.

    Plus I take a sublingual liquid high-dose Vitamin B Complex which I need and improves stamina.

    I just read that exercise improves the adrenals. But with severe CFS with its defining feature of Post Exertional Malaise, exercise is pretty impossible.

    What a vicious cycle CFS is, with all the attending maladies that can come with it. Drat.

    So here are the things I recommend so far, as they come to mind - for weakness, malaise, and brain-fog:

    1. Charcoal

    2. Aspirin

    3. Garlic (500 mg. - 1,000 mg. capsule a day)

    4. Pau d' Arco

    5. DHEA

    6. Hydrocortisone cream (used very judiciously for a quick boost when direly needed - such as to get to an important appointment)

    7. Grapeseed

    8. Kelp

    9. Magnesium (1,000 mg.)

    10. Vitamin B-Complex (high dose, sublinqual)

    11. Chi Swing machine

    12. Breathe

    Looking forward to trying my adrenal glandular soon. Hope to add that to my list of personal helps for anyone reading here to give a try.

  20. MicheleK

    MicheleK Member

    Hi Patty, I too am a mostly bedbound ME patient. I also have FM, POTS and hypothyroidism that goes through spurts of responding to replacement and not responding so well. These things all make life a challenge to say the least. I am constantly amazed at how sick a body can be and yet still live and have the majority of things functioning at some level. The body is amazing. I miss mine also being amazingly well. LOL

    I found the info on the hydrocortisone cream very interesting. I guess I'll look for the Costco sized tube and try it when I need to take that dreaded shower. I use a shower chair which helps tremendously. Baths are easier but cleaning the tub before and after is not!

    Recently my ME specialist recommended starting DHEA. I was doing what I like to refer as "coma sleeping". It's where I can sleep one or two full days and nights without waking up. She said the DHEA might be helpful for that. And of course when your body is that drained you feel totally weak when you are awake. It's ridiculous that you can sleep that much and wake up just as tired as if you never slept!

    Anyhow I am going to get some DHEA and try it. I'm also going to try our occasional use of the hydrocortisone cream and mention that to my doctor.

    Thanks for posting. I appreciate it.

    OH one more thing. What is a Chi Swing Machine?

    Thanks and I wish you better days. I understand the limitations very well. xo