The one thing I remember Dr Malovat saying to me, was "don't give in to the pain, and do something for your self and your family every day." It can be as simple as showering and putting on make up, or making my husbands lunch for work ( no matter how small). I know the pain and fatigue is so bad still some days, that I wish it would just kill me, but then I remember that there are easier days of pain if I can just get through this one day. I did develope a dependency for the meds. I came off ALL of them and went to all non narcotic meds and feel SO MUCH better. I take Tramadol for pain, with Lyrica, and an anti depressant, and Trazadone for sleep. I really do feel better than I did when I was first diagnosed.

Can you tell me about your experience with the pain rehabilitation program? I have a consultation for it in a couple weeks.

I first had a level of Fibromyalgia for 7 years where I could be functional if I took Lyrica and Tylenol at bedtime. Then the combo of cold winters, neck disc degeneration and bone spur pain pushed me into a much higher devilish pain level all over and my PC dr changed my diagnosis to CSS. It’s like an angry hornet that won’t stop stinging us isn’t it? I now have Adrenal exhaustion, POTS, body wasting, lots of food reactions/pain and pancreatic insufficiency.. afternoon heavy sleepiness from the meds I have to use in order to sleep the night before is keeping me from getting anything done. I found that Myofascial massage and even regular massage feel good at the moment but in two hours, there is a hellish pain increase that my nervous system adopts and it never subsides. We live with great frustration don’t we? I send all of you who have CSS my empathy and prayers. I had a blood test ordered by a Functional and Dr to check my brain chemicals and dopamine was way too high. due to pain, he said. And advised me to avoid supplements containing Tyrosine, Ginseng and turmeric bc they boost dopamine and make migraines worse. So I did and found he was right.
I am a retired RN and do medical research often. I’m glad to share my helpful supplements list with you all: Alpha Lipoic Acid, DHA, Bacopa (lowers Dopamine some and boosts brain neuron production), Saffron Extract, B12, Omega 3 fish oil and Ginkgo are Dr Dale Bredesen and Dr Daniel Amen’s favorite supplements for the brain (these two drs are our nation’s top brain drs). I take a great multi-vitamin for women over 50 by Thorne Laboratories. I take Milk Thistle/Dandelion supplement for my liver (important supp). I take extra Vit C by Health Source SuperFoods made from Camu Camu, Amla and Acerola. I rotate it with Vit B Complex. I have histamine intolerance so I have to take a histamine enzyme 15 min before I eat. (If our bodies don’t make their own Histamine Enzyme called Diamine Oxidase, we will have a severe stinging headache after eating foods with high and moderately high amount of histamine. This is a hereditary condition). I take digestive enzymes, HCL and a soil-based probiotic by Just Thrive or Megaspore by Microbiome Labs. All these supplements are sold on Amazon.
One thing is for sure - we must all avoid MSG or we will have terrible headaches and less brain health. Also run from pork, processed foods, seed oils, conventionally fed cows and chicken and food dyes. Eat organic if u can possibly afford it so u can avoid gut destructive glyphosate. Drink a lot of filtered water with lemon each day so u can flush out a lot of chemicals we get through foods, air, heavy metals, plastics and many other sources. I hope this info is a help. God bless all of you!