[Closed] Fibromyalgia and other invisible chronic illnesses

I want to pluck you from your hurt and place you in paradise for about a year, and I suspect you will see a lot of relief.  I want to put something on you that prevents you from reading any bad news, and fill your day with dancing, games, news that delights you, and gets you believing that there is so much good in this world, so many people taking care of it, that you can finally take a long break from holding the world together yourself. 

Yes, you are an empath who wants to heal others in a heavy planet. You have a natural radar for sensing pain so you can heal it, but others' pain has gotten into your system and your system wants an emotional vacation. The fatigue is the body's natural desire to escape the worry and pain in your psyche. Can you put a moratorium on bad news? That together with light exercise twice a day, and a lot of laughter and dancing and yes, rest.  The Positive News section of this forum has links to websites that  focus on all the good that is happening. I need it too.

Pacosurfer, just wanted to give you some support. I'm not a medical intuitive, but I retired from the medical field, where I did some research on fibromyalgia (and chronic fatigue syndrome, which overlaps with fibromyalgia a lot) years ago. It's a tough row to hoe. There's speculation that in CFS a viral infection kicks part of the immune system off track, as patients often report that it starts with a flu-like illness. FM can also start the same way, but can also start after physical trauma, for example when localized pain and stiffness somehow becomes generalized. Again, the body's system of healing and recovery has gotten off track. You are doing the right thing by respecting your limits: such as being as active as you can but getting as much rest as you need. Honor yourself and feel the warm and healing energies that come from all of us in this Forum. 

@pacosurfer, I am so sorry that you are struggling with fibro. I can totally relate.  I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia over 25 years ago.  In my case the ME/CFS was and still is worse than the Fibro.  Back then they knew very little about these conditions and didn't take them seriously.  My well-intentioned but misguided internist did take it seriously, but she said one of the best treatments was to improve my aerobic capacity (i.e., aerobic exercise) as well as strength training.  At the time I was taking 4-hour classes 2 days a week and working full time at night.  I would make daily trips to the gym, but wondered why I would need a 2-hour nap when I returned home from exercising.  Wasn't exercise supposed to energize you?  I would hear that I was "deconditioned," and my energy would improve over time.  Yes, I did become deconditioned, but I didn't start out that way.

Jeanne is really on to something.   I have always been convinced that my empathic nature either created, or exacerbated, this condition.  Mine was probably triggered by a car accident when I was in my early 30's.   That, combined with my sensitive nature/constitution, autoimmune issues, and some early traumas, created the perfect storm.  I still continued to push myself, focusing more on others than what I needed.  I spent years getting through my day on adrenaline.  Eventually my adrenals became depleted, and I paid for it dearly.      

What is happening now on this planet is busting our butts, especially if we have any sort of health challenge.  I agree with Jeanne that an emotional vacation would help.  Lots of self-TLC is important now.  I understand that you have these amazing gifts and want to contribute and make a difference in this world.  You are already making a difference.  The most important way to claim your place in this world is to honor yourself.  Please know that you are enough, exactly as you are. 

Should you eventually want to try some sort of exercise routine, it should not feel like exercise -- e.g., qui gong, tai chi, gentle yoga -- something that connects you with your body, that gently moves energy, that grounds you.  

I have other diagnoses that have come out of this, primarily centering on inflammation.  I feel pretty exhausted and foggy brained right now, so I will share more about my journey in a later post.  Perhaps I can offer you some ideas, or at least help you avoid some of my mistakes.

In the meantime, I am attaching an excellent website that many CFS/fibro doctors refer their patients to.    

https://www.healthrising.org/

I'm sending you lots of love and healing energy.

I appreciate everyone's response. It's hard to wrap my head around the idea that I'm here to heal people, as I feel like a neurotic mess myself. I am understand if I worked in a healing profession, like nursing or counseling, but I'm a librarian. I work in a medical library during the day, and a community college a few nights a week.

It's hard for me because I'm not doing anything special; if you lined up 1,000 librarians, I'd probably fall smack in the middle in terms of talent or skills. The only thing I know I'm good at is being kind to people. I laugh with others, usually with my self-deprecating, sarcastic self of humor. 

I like saying hi to the residents, medical students, and nurses who come to the library. I sometimes ask them, totally dead-pan,"So, you saving lives today?" I know the ones I can joke around with. I ask some doctors about their families, and the stuff going on with them. 

I don't feel like I'm anything special. I get my work clothes at Walmart. Sometimes, my boss will say, "You remember we talked about that at the last meeting?" And I'll reply, "Was I there?"

That's all I feel I have to offer people. Smiling at them, talking with them. Making sarcastic remarks, like when someone asks for white-out, and I say, "What? You're a doctor! You don't make mistakes!"

I know I'm very good at writing, but I don't really write that much. I'm actually waiting for my twin flame to come back in my life. I'll be the writer, but she has the ideas. I want to give her ideas a way to be born...almost like creating a "baby" with her. And since we are both women, this will be much faster than actually trying to create an actual baby.

@Pacosurfer

I suffer from multiple autoimmune diseases but not FM. My heart goes out to you. I have quite a bit of experience in dealing with these issues, so this is not coming from my intuitive side so much as my medical-science side.

First of all I second everything Snowbird said. Highlighted and underlined.

Here are some things that I and many of my friends with autoimmune do that helps. Think of it as a food menu - you don't have to do all of them, but maybe try more than you think you want and find what works best.

• Acupuncture
• High doses of vitamin D3 (10,000iu per day - that way you don't have to sit in the sun) - remember to add some Vitamin K2, Calcium, Mag and Zinc to increase absorption. (Make sure all minerals ingested are in a chelated form - glycinate or lactate.)
• High doses of Magnesium several times per day (you can back off if/when diarrhea sets in)
• Taurine in regular doses (neuro-regulator for pain transmission)
• A diet high in Omega-3 fatty acids (grass fed meats, wild fish, organic eggs, seed and nut oils, etc.)
• Avoid gluten, soy and sugar
• Completely eliminate junk or processed foods, eat organic as much as you can, preferably local
• Vitamin C IV infusions
• Heavy metals urine testing and blood chelation if needed
• Low Dose Naltrexone (<10mg per day) - it is an endorphin receptor blocker. I take it at bedtime. It's supposed to keep endorphins circulating while you sleep, which is when the rogue parts of your immune system go on the prowl.
• IF you live somewhere where you can, look into CBD/THC oils. I recommend a balm or lotion for painful areas and a 4:1 CBD:THC ratio oil capsule or tincture. This really works on pain and will NOT get you high (because you are in pain).  I have found balms with CBD plus Arnica to be especially effective.
• Sporadic fasting - pick one day a month and just have water from when you go to bed til sunset the next day. If you have blood sugar issues, use a cleansing "green" juice.
• For fun and in the "can't hurt might help" category - drink tequila now and again, and get some Manuka honey and eat it raw. Alcohol drains the lymph system and tequila has prebiotics. Manuka honey has special healing enzymes that are good for your gut health.  Also in this category - find things that make you laugh, whether it's old movies, stand up comedians, funny website. Laughter makes your brain release more healing chemicals.

SALUD!!

@laura-f

Thank you! These is a great list. I have done basic yoga moves, and I feel very relaxed after. I also avoid gluten, although the soy and sugar are challenges. I take a highly-potent Omega-3 supplement twice a day, and I also have a magnesium supplement.

I will look into the CBD oil. 

Thank you for your list. And I just may have to check out tequila; you know, for health reasons...

@Pacosurfer

As for the tequila, stick with the golden varieties, not the clear. There is a juice I get at organic markets (I think Evolution brand?) - they have 2 flavors I use for cocktails - Defense Up (Orange, Mango, Cherry ++), which is great for mimosas or with vodka, and a Ginger Limeade which works super well as margarita mix. I use my celtic sea salt on the rim.  We remain fairly civilized, no need to be cocktail martyrs ? 

@laura-f

I've tried the CBD oil recently when I had a reaction to the statin drugs. My legs and knees were really hurting, and the doctor wasn't helping  G. forbid he gave me a pain pill. Anyway, the CBD oil didn't help, and it wasn't cheap.

@ElaineG

Have you tried turmeric supplements? Those are supposed to be good for joint pain.