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I'm New Here -- Living with CFS and my treatments

Jeanne30 profile image

My Treatment

I have had CFS and Fibromyalgia for 2, almost 3 years.

I have been taking Celebrex and Amytriptaline for about the same years for the pain.

I have also been taking D-Ribose (for energy), Ashwagandha, Vitamin D, Zinc, Magnesium, Calcium along with regular multivitamin gummies.

I also use various pain reduction methods including prescription Ibuprofen 600, pain creams and gels, cold neck and shoulder wrap as that is where most of my pain is at. I also use an herb called Kratom and it has helped with both mood/depression, fatigue, and pain.

My worst fibromyalgia pain has been highly improved since I've been taking Amytriptaline and Celebrex. Before then, I was having extreme pain in all my joints to the point where I couldn't move my toes, bend my knees, stand on my feet, stand up straight all because of tight and swollen joints. I would cry myself dry because it was so extreme. I was lucky that the low-cost clinic (which was all I could afford as a low-income worker) took me seriously and did their research. Bless them.

The fatigue and mental fog is what bothers me most. It is the hardest to treat, but I have been helping myself by increasing healthier foods and decreasing unhealthy ones. I've researched what foods promote better mental clarity and energy as well as when and how to use them.

I have gotten a lot of great information from a book I bought called "From Fatigued to Fantastic!" written by Jacob Teitelbaum, M.D. (Medical Director of the Fibromyalgia and Fatigue Centers. In this book, he fully explains why and how to overcome chronic exhaustion, achiness, brain fog, poor sleep, decreased sex drive and recurrent infections, and more. I highly recommend it!

My Comorbidities

I also deal with many different health disorders, both physical and mental. I have bipolar 2, depression, anxiety, hidradenitis suppurativa (an autoimmune disorder that includes painful bumps similar to acne but much worse), interstitial cystitis (overactive bladder with 40+ trips to the bathroom a day and also includes chronic infections). More recently I had a neck and shoulder injury that I'm sure is part of working in labor like job for 4 years. I am now having physical therapy for that and im hopeful it will help.

All of these disorders include treatment, so I am on a long list of pills/medication/therapy.

10 Replies

Try Rifaximin 550 mgs, I think for ten or 14 days. Check for Sibo and have your liver checked. Also high dose B-1 for Fibro

Jeanne30 profile image
Jeanne30 in reply to IndyRaza

Hello, and thanks for replying. When you refer to sibo are you referring to the breath test for Small intestinal bacterial overgrowth? I'll ask my doc about this and my liver checked. I get my blood and stuff checked regularly, but there is always one more thing. Ill look into Rifaximin 550mgs. Thanks.👍

IndyRaza profile image
IndyRaza in reply to Jeanne30

CFS IMO is mitochondrial dysfunction. If the intestines, (liver) are not producing usable lipids, then the ATP cannot make energy. Resolve where the kink is in the lipid transport and life resumes. Sibo robs the body of fat soluble vitamins, because the bacteria compete with you for survival.

Gosh that's so much to contend with! I'm replying in order to welcome you - the very nature of members issues make this a quiet site.I have CFS, im finding that extra Vitamin B12 and particularly Ubiquinol very helpful.

Thanks for the book recommendation too, Dr Sarah Myhill is my go to for advice (UK)

Jeanne30 profile image
Jeanne30 in reply to peege

Thank you for replying. It's nice to know I'm not alone in this. I will try your B12 advice (how much do you take?) and I will research Ubiquinol, although I believe I've heard of it. I will also check out that book. I love to read.👍

peege profile image
peege in reply to Jeanne30

I must look up the dose of B12 I take - it's in microgrammes rather than mg. If you click on my Peege name you should be able to see my previous posts about Ubiquinol explaining how I decided to try it & the doses.

Back soon P

peege profile image
peege in reply to peege

NB I take two 1000micrograme tablets daily of B12. Ubiquinol is 100mg per day except at times when I feel broken from overdoing it (ie a week with small children) when I'll take 200mg (the maximum safe dose) for the duration plus a further week afterwards. P

Edit...... I got all my information from Dr Sarah Myhill's book then double check safe dosage in my Pocket Guide to Vitamins by Angela Dowden (a renowned nutritionist).

healthunlocked.com/pasoc/po...

Check out the second to last paragraph on here and a few of the replies. Seems some people find that their Interstitial Cystitis improves imensely with B12 injections.

Jeanne30 profile image
Jeanne30 in reply to VellBlue

Wow, I would have never thought B12 would have an effect on ic, thank you so much for the reply!👍

VellBlue profile image
VellBlue in reply to Jeanne30

I presume from what you say above that you get your B12 serum levels tested regularly? Even if they are coming back in range, it may still be that you are "functionally deficient", in that the B12 is not getting where you need it. Certainly a functional deficiency in B12 also causes brainfog and fatigue, as well as depression and anxiety, so you may find that increasing your B12 levels also helps with those things.

Have a chat with your doctor about increasing your B12. They will likely be reluctant to provide you with B12 injections if your level is not below range, but is worth asking about. You can't have too much B12, unlike some other vitamins, it is not toxic at high levels. Often people who have had long term B12 deficiency need to be on very frequent B12 injections for life just to keep the levels sufficient to avoid symptoms.

Take care. 🌼

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