Fibromyalgia and other invisible chronic illnesses  

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(@pacosurfer)
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08/29/2019 8:43 pm  

About a year ago, I was diagnosed officially with Fibromyalgia. I instinctively knew it about 20 years ago, but it is validating to get an official diagnosis. Fibromyalgia is diagnosed when someone has at least 11 of 18 tender points on their body; I have all 18.

As a highly-sensitive empath, with social anxiety and an overactive fight-or-flight nervous system, this doesn't surprise me.

There is no known medical cure. But I'm sure many of us experience chronic invisible illnesses. Does anyone have any intuitive feeling of what could help fibromyalgia? I know we need lots of sleep and downtime. And even the sun can be too bright for me, so I keep the shades down. 

Does anyone get a psychic "hit" on what is the ultimate cause? I like to say my fibromyalgia is caused just from being in a physical body on this heavy planet. Perhaps for me, that it the ultimate cause. 


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(@jeanne-mayell)
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08/30/2019 10:57 am  

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.


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(@snowbird)
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08/30/2019 11:15 am  

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. 


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(@deetoo)
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08/30/2019 2:23 pm  

@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.

 

 

 

 


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(@pacosurfer)
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08/30/2019 6:43 pm  

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.

 


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(@laura-f)
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08/31/2019 3:40 pm  

@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!!


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(@pacosurfer)
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09/01/2019 10:04 am  

@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...


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(@laura-f)
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09/01/2019 11:19 am  

@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 😜 


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(@elaineg)
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09/01/2019 7:00 pm  

@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.


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(@coyote)
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09/01/2019 7:59 pm  

@ElaineG

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


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(@elaineg)
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09/01/2019 8:17 pm  

@coyote

Yes, I'm using turmeric drops. My legs are better, but I'm still afraid to try a soaking bath, for fear I can't get up. I put my friend on some herbs that I had around. He still can't get to a real doctor (such as they are).


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(@laura-f)
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09/01/2019 8:17 pm  

To elaborate on Coyote's post - I take Zyflamend, which has turmeric, ginger, and a bunch of other anti-inflammatory stuff. I find it helpful.


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(@lovendures)
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09/01/2019 8:20 pm  

Yes, @Coyote !

Curcumin supplements ( a substance in turmeric) has been wonderful for me.  It has dramatically reduced my issues with tendonitis.  I thought I was going to need surgery on my hand but it is manageable now, not nearly as swollen filled with pain.  I have less joint paint and I know inflammation in my body all over has decreased.  Also, I have lost some weight.

Arnica, a homeopathic is also helpful for some types of pain.  It works best when taken without food.  No garlic or peppermint either as those will weaken its ability to work.


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(@deetoo)
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09/01/2019 9:34 pm  

@elaineg

I had a bad fall two years ago and fractured my patella in 8 places.  My integrative doc recommended Wobenzym PS for the inflammation and pain following my surgery.  It worked really well.  Wobenzym contains systemic enzyme support, and was originally prescribed by doctors in Germany going back to the 60's.  My husband began taking it when he could no longer take cortisone shots for the inflammation and bad pain in his hand.  It took about 2 days to work, and now he swears by it.  He's been taking it daily for 2 years.  There is an "N" and a "PS" version; PS is the one that physicians prescribe.  I believe the main difference is that PS contains twice the amount of the major active ingredients -- PS is also twice the cost of the N version.  

I also agree with many of you about curcumin/turmeric.  I find that it really helps.  Lovendures, thanks for the tip about not taking peppermint or garlic with arnica -- I wasn't aware of that.

I've never tried the CBD oil.  I guess we're all different in terms of how our bodies respond to certain supplements and meds.  I once tried the low dose naltrexone, and it made me very hyper.  My doctor even had me drastically cut down on the dosage, and it still had that effect.  That was about 5 years ago; don't know how I'd respond to it now.  My doc said that sometimes we can react to the fillers in a pill, rather than the actual active ingredient.  Hard to say until you test it out.  Given my sensitivities, I'm just really cautious when I try any meds and even some supplements.   

 


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(@pacosurfer)
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09/03/2019 6:54 pm  

When I had a reading with Jeanne, she said, as an empath, I was constantly bombarded with energy...very similar to sunbeams hitting me all the time. And that's exactly how I feel; it's like my body feels like it's constantly walking through a hailstorm. I'm constantly being hit. I feel it more when I watch the news, or when I'm in a crowd of people. Heck, even being by myself I can feel it. It's no wonder I spent my entire life trying to block the bombardment with food.

I read a book that talks about those souls who volunteered to come to Earth to help, specifically after the atom bomb was dropped. I am what is considered to be a 2nd wave volunteer, and my only purpose is to act like an antenna, to spread my light to everyone I come in contact with. Apparently, I don't need to do anything. I just have to be. Which, when I think of it, I wish I knew before I took out student loans to get my Master's degree.

I can do yoga, and take magnesium. I'm already on an SSRI for anxiety, and I take Xanax as needed. But to be honest, the only thing I want to do is hide. I dream of running away and hiding somewhere in the cool mountains. Get off the grid totally. No news. No social media. No phone. Yet, I feel a personal responsibility to those in my life just to be present. I'm tired of it.

I feel so bad that I'm not doing enough for others...but it takes all my energy just to get through the workday. My biggest fear is that, when I cross over to the other side, I will be told I didn't do enough to help.


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(@bright-opal)
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09/04/2019 9:56 pm  

@pacosurfer

I really wanted to reply to this topic, to you, and as I was starting to write something, I was distracted.  Maybe it was because it wasn't time.  I am also a person suffering from fibromyalgia, chronic fatigue disorder, osteoarthritis, discopathy, etc,  which brought me to a deep depression.  I use to be an active person until adulthood.  I was always having aches and pains but when I got mononucleosis, my pain tolerance went down the drain. 

So I feel for you.  If you say your skin hurt, I'll understand.  If you say your nails or hair hurt, I'll understand.  I didn't think nails could hurt until I had a fall last spring.  But I think what is most difficult for me is the lack of support or understanding from family and friends.  So, when I get a "pain attack" I just turn away and further isolate myself. 

As I'm writing this, I went to pick up my budgie.  He is tiny, only 7 months old.  There are some spots on my hands where he steps and it hurts really bad. 

Jeanne put the finger on it when she wrote about the lifestyle we lead.  "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. "

I wake up in the morning and go directly to this little being I got about a month ago and say "hi".  I sing with it, I dance with it (well, my version of dancing).  He is bringing me a lot of good light.  Zootherapy can be amazing.  I'm a dog person so I never thought I'd get into birds, yet here I am.

When watching movies, I only watch comedies.  Every evening, I make sure to listen to comedies before going to bed.  Laughing therapy is something I would like to try.  Apparently it isn't only hilarious but it is a physical exercise that is very good for you.

There is a book from Dr. Steven Gundry called "The Plant Paradox: The Hidden Dangers in "Healthy" Foods That Cause Disease and Weight Gain".  A friend of my mother read through that book and has been following the recommendations religiously.  She used to always live in pain, debilitating pain.  She couldn't lead a normal life.  (ring a bell?)  Well since she started following the dietary guidelines she has been living pain free.  My mother is reading it.  Based on the things she told me, I decided to try reducing the milk products intake in my diet.  I'm a cheesaholic, so it's tough.  But WOW, I see a huge difference in my pain level and threshold between when I eat cheese and when I don't. 

Many people will suggests many different things.  It's a trial and error process:  what works and what doesn't.  I also find that practising mindfulness helps me a great deal.  I wish you luck, send you love and healing light.  I understand what you are living through because I'm living through it along with you.


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(@jeanne-mayell)
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09/07/2019 11:44 am  

This is such a great thread.  Thank you, Pacosurfer for starting it, and the rest of you who have contributed such great ideas, all coming from people here who have also struggled with chronic illness. 

When I first got lyme four years ago and antibiotics wouldn't make it go away, I stepped into this world of wonderful remedies for chronic illness. The two biggest no-nos for me, the conditions that make my symptoms flare up are (1) being too sedentary, and (2) exposing myself to toxic news and toxic people (same thing actually), (3) laughter is a huge remedy, as is (4) being in nature, especially being active in nature, like gardening, hiking, kayaking, swimming.  

As an empath, nature is my biggest healer. As soon as I get to a country lake or mountains, I am strengthened. I think of Heidi, the Swiss orphan who lived in the mountains with her grandfather.  When her concerned relatives made her come and live in the city, she got deathly ill. Only a return to the mountains with the meadows and the cows and her grandfather could bring her back to life. 

 

 


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(@bright-opal)
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09/09/2019 8:30 am  

I understand what you are saying Jeanne, (about nature).  When I was living in Toronto, I would take at least one vacation week a year, generally in the fall, ad go to a cloistered monastery where they would accept women one week/month for private retreats.  Their monastery was isolated and a big part of their land was forested. I would walk hours in the forest, meditating and praying, being so thankful for being there and for every little thing surrounding me.  My new apartment, although still a city is by the river and we are surrounded by trees, every morning I take my coffee on the balcony enjoying the peace.  I feel energized for the day, at peace, positive and motivated.  I hope I'll remember how lucky I am to have such a nice environment.


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(@jeanne-mayell)
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09/14/2019 7:33 pm  

A friend of mine, Judy Tsafrir, who is a holistic psychiatrist just posted this article on her website after attending a conference on the impacts of EMF (electromagnet fields) on our psyches and bodies.  Strong fields from Bluetooths and wireless waves from your iPhones, and computers and the modems could be affecting you.  And there are remedies for this. Like getting a pair of $29 ear buds that eliminate the EMFs. I'm buying them for my whole family. My desktop is already hooked up to an ethernet wire rather than wireless. But not sure if that makes a difference. 

We've known about the bad effects of electromagnet fields since the 1970's.  When I wrote for EastWest Journal in the mid 1980's we did a whole issue on it. But now with the rise of wireless communication, the hazard has gotten pushed under the rug. 

Here's Judy's article: https://www.judytsafrirmd.com/blog/. Judy also has other articles on her site for ways to help mental illness with nutrition, in case you would like to learn more about this.  

I put it in this thread because I think it could be one more contributor to chronic illness that we can fix.  If anyone knows of some other solutions, I'd like to know. 


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(@ratbum)
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10/03/2019 4:21 am  

Hi, I may not have fibro but I do have interstitial cystitis and pcos. I was recently diagnosed with pcos and I've been taking ashitaba with milk thistle for bout 6 months now and its keeping my blood sugar and blood pressure stabilized. My cholesterol is now normal and its reversed my fatty liver. Enzymes were 61 now 29 which Is normal.

I also had the added complications of getting lithium poisoning at age 10 and not only did I almost die, but it left me with slightly damaged kidneys, slight brain damage, and metabolic damage.

Like I must have animal protein at least twice a week and regular plant protein with each meal or my kidneys will actually start shutting down. So much protein is coming out each time I go

 The ashitaba has totally been helping it which is great.

Been having weight issues ever since. Its caused lots of problems for me.

I also have been gluten free for 4 months now as I found out I'm dangerously intolerant to it. I feel better from it.

wonder what the cause for pcos and cystitis are, would love to be able to get rid of all this puffy inflammation and water weight off me.

Also the ashitaba really does work well I can confirm the claims its stated are true as my dr and I have been monitoring my stats for 7 months now on this stuff.

http://en.drmakise.com/ashitaba_chalcone/

You have to get the real stuff from a special compounding lab in Japan where it grows from. Lot of other places in the US that sell it are fake.

https://www.makiselifeup.com/product/ashitaba-chalcone-japonica/

Hope that helps some people🙂


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