Hi, I have had Fibro and Chronic Fatigue for a long long time. Like most good days and bad days. The worst for me at the moment is the "no energy" aspect. I don't seem to have any energy to do anything. I am trying pacing, but just can't seem to make it work for me... What is your experience with pacing and how did you do it? Was it successful or are there other things I could be doing to up my energy levels. Physical exercise is a problem as I also have Fibromyalgia. I am on high doses of Vitamin B as well as various other medications for pain relieve and depression. I know it all ties in together, but there has to be something I can do to break this circle, even if it is a little...
I would love to hear from others hwo they cope and what works for them. Thank you.
There is a very good chance you have lymes disease. Tell me any symptom you have, even if it seems unrelated.
Go to www.NTfactor.com and research their lipid and mitachondrial replacement therapy. With a chronic intracellular bacterial infection your cells become "leaky" causing the cell to become weak and lose its ability to hold energy stores. NT Factor "plugs up" the "holes" allowing the cells to hold in the energy. This product was developed to help those soldiers suffering from Chronic fatigue.
Contact ILADS (www.ilads.org) and do a symptom checker for Lymes disease and research how it is being horribly underreported because of faulty tests through labcorp and Quest.
Contact ILLADS and locate a lyme doctor near you. They will draw blood, centrifuge it, then you have to send it out to IGENEX Labs. They use Dr Mattmans technique of culturing hte blood for Western Blot nPCR, and they can test for co-infections, Babesiosis, bartonella, Brucella, etc. They are linking the Lyme bacteria to ALS< MS< CFS< GWI,Fibro and alot of autoimmune diseases. There are also herbals that help break down the biofilms that protect the bacteria from antibiotics. The only antibiotics that seem to work are the anti DNA replication drugs, since this is a mycoplasam infection (and spirochetal and cystic) It will never show up on Labcorp or quest tests.
Hi ewford, thanks for your reply. I have had checks and tests for lyme and it's a no. I'm original from Germany and Lyme Disease is far more common over there then what it seems to be here. But no, I deffinately haven't got it. Thanks for the idea though.
No, this is NOT the lymes you are familiar with. Im sure you have had the Labcorp tests and they showed negative. So did I, I had 3 NEG labcorp tests. I had the IGENEX western blot, coinfection panel and bartonella panel. Pos for babesia, Bartonella and Borrelia Burgdorferi. You might want to reconsider.
These are just the once I can think of at the moment. Like I said... the list is long and I have found in the past that absolutly everything I have been to the Doctor with over the past 2-3 years has been associated with my Fibromyalgia.
Well, well. You sure have a challenging life!
Most of your issues are rooted in your gut.
Gut Dysbiosis, Leaky Gut Syndrome and Candida. You don't need to look elsewhere!
80% of your immune system is within your G.I and Digestive systems.
Look into the GAPS (the gut and psychology syndrome).You must repair this part of your body, before anything else can be helped.
I get the feeling that you have somewhat of a "disconnect".
That is probably part of the mental symptoms associated with GAPS.
Is there a person close to you than can support and guide you through the long recovery? (as there's no fast solution to your conditions.) It would be extremely important to have such a person around.
Please post at the alternative therapies or message me directly, if you want some specific
pacing one's self with REST is the key.
it took me years to figure this out.
for me, it means getting up slowly in the morning, as though taking an hour and a half - or two - or whatever you need - to warm up.
then onto light duties.
i have stopped full time work.
exercise and fitness program is out if the question for me - completely counterproductive - only makes things worse. over exertion is easy - if i walk even 50 steps too far or too fast, then i pay for it for the next day or two.
you sound like you still have your wits and logic so that's a bonus.
then my healing routine. it has been long term.
i got a good dr.
have improved nutrition, and removed myself from stressful situation, eg driving off-peak for errands. daily routine of just keeping myself fed cleaned and house and bills in order are all the exercise i need.
then i have been sorting out very old emotional damage that had never been addressed - grieving losses properly, breathing exercises
if i get the slightest feeling of exhaustion i stop and rest. it took three years to get this habit.
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