Very Personal Post

Happy Sunday.

Normally I use this blog for decor crazy and my home designs.  Today I thought I would share something very personal here on the blog.

I normally would not want to do this but I thought maybe by sharing my personal story here it might help some of you and help me with more information and help.

I know with all the changes I do to my home a lot of you refer to me as someone that is never idle and is always moving and doing things.  That is so true about me.  

The personal part I am going to share is I fight through a rough autoimmune disease that can really be debilitating.

It is Fibromyalgia

Here is the Webster Dictionary meaning of Fibromyalgia.

fibromyalgia

 noun
fi·​bro·​my·​al·​gia | \ˌfī-ˌbrō-ˌmī-ˈal-j(ē)ə  \

Definition of fibromyalgia 

a chronic disorder characterized by widespread pain, tenderness, and stiffness of muscles and associated connective tissue structures that is typically accompanied by fatigue, headache, and sleep disturbances

I suffer with it all.  
It comes and goes in my life.  
I have noticed in the past year I have had
 more flare ups than normal.  
I use to just move through the pain and take
 Advil or Aleve on occasional flare ups.  
In the last year that has not worked and I 
have worked with my doctor on some of the
 biologics out there with FDA approval to
help.



The good news about these newer drugs is
 they work well to keep the pain and fatigue
 under control.  
The bad news is they have harsh side 
effects.
  
The one that I suffer from is brain fog and
 memory loss. 

 While the medications were working for the
 flare ups

I was living in a fog and not remembering 
much of anything most days.


At first I thought it was just turning 60 years old and senior moments happening!Then it became more and more harsh for me.  Not a good way to live life when I have my mom's care and babysitting my grand girls and living a pretty active life.

My mom had an important test at the hospital and I even talked to her the night before on what time I would pick her up etc.  That night when I went to bed I forgot competely and did not set my alarm and my mom called me at the time I was to be at her place to pick her up to see where I was.  I have never done anything like this.  I am always early and never late and very organized in my life. 
 That was just the icing on the cake for all theforgetful moments I had been having on a daily basis!


I decided to wean myself off the biologic and cut the dose.  The good news is that the brain fog and memory stuff is so much better.  The bad news is I am in so much pain.  There are days I can hardly walk.  It effects my feet, ankles and achilles.  
This is the most frustrating part of my life.  So I am reaching out to all of you today to see what natural therapies might be out there and how they might be giving you relief.


I have been doing a lot of research on the CBD oils and exercises help.  Yoga is a big one but I am just not a yoga kind of gal.
The CBD oils are getting really good results.  The issue with those are you have to be careful to find a reputable company that is making these oils here in the USA and are not scammers.  The prices are all over the place for these.  I do see my doctor at the end of the month to go over some alternatives.
  I hope she may have some tricks up her sleeve to help me get off the drugs
 and more into natural or off brand Rx's that can give relief without the harsh side effects.
At this point for quality of life I am willing to try anything that might work with in reasonable perimeters.

I know medical marijuana is the big thing now.  I do not think I want to go in that direction but am willing to try the CBD oil with out the chemical that cause the high in marijuana.  I am crazy enough to have that to deal with!

So if any of you suffer from anxiety, arthritis, fibromyalgia, chronic fatigue syndrome etc. etc. and have tried some natural help I would love for you to leave me a comment andinformation here on the blog.

Have a great start to the new week.Hugs,
Kris

82 comments

  1. I have a friend using the CBD oil and she swears by it. I was diagnosed Type II diabetic just over a year ago and noticed my brain fog got a bit better once I got my insulin level under control. Ever since menopause I felt a difference in my memory so in part I do think it comes with age. I hope someone responds to you with input that will help with they fibromyalgia. I know a lot of people swear that going gluten free is beneficial to reducing inflammation. Sending big hugs your way, Liz

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  2. Oh Kris I'm so sorry that you suffer with this awful disease. I have suffered with muscle pain and all the symptoms of Fibro, but my Doctor refuses to diagnose me with it. She says being diagnosed with something like Fibro makes it worse for the patient mentally!!!!what??? But this isn't about me, so as for the CBD oil...my son Jeff is taking it for his Crohn's, anxiety and head aches brought on by the Humira injections. It works for him. We buy it from a local shop where I know the shop owner well. The CBD oil he uses is Hemp Lucid 500 mg. water soluble. He drops it in water and drinks it. He takes 15 to 20 drops per day and recommends working your way up as needed. 20 to 25 mg. daily. Hemp Lucid is the whole plant, purley natural minus the THC. I think you can order it on line. It is expensive but really worth it. I'm thinking of trying it myself.
    I know all too well about the brain fog and sleep problems. I hope and pray that you will find something natural that will work for you.

    hugs,
    Sissie

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  3. Kris,
    I know how debilitating Fibro can be. I had a good friend, who on some days, could not get out of bed at times. I am not familiar with treatments so unfortunately, I will be no help to you in that department. I suffer from Hashimotto's Thyroiditis which is also an Auto Immune disease , as you know.
    That comes with a whole gamut of symptoms like muscle and joint pain, GI issues ( which seems to be my thing as I also have IBS), Sun and heat sensitivity, fatigue, intolerable of temp. changes,hair loss, etc. When you mentioned the pain is concentrated in your ankles, feet and achilles, I could not help but wonder about myself as that is where the majority of my pain and discomfort is too. Since I got sick at Christmas, I have had such pain in my feet and ankles that I am constantly taken medication for it. I also just had my knee injected and it is killing me as if the shot did not work.....
    Thanks so much for sharing your story. I hope you find some suggestions for treatment through this post and I am sure many people will be inspired by your story and honesty.
    I just wrote a post about blogging and how it has changed but this is one instance in which it has not changed. This is the perfect example of what I love about blogging, people sharing both the Ups and Downs of their lives.
    Sending prayers your way that you find something that will help you, my friend!!
    Many Hugs to you!
    Deb

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  4. Hello Kris. I am sorry that I have no helpful advice to offer, except to say I am sorry you are suffering. Autoimmune diseases are so difficult because they aren't "visible" to others, yet people suffer with them so. I truly hope you find something that will help you. Side effects are awful (that I DO have experience with and there is one drug out there that I will NEVER be put on again). Hugs from me, Jenn

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  5. Kris- I am so grateful that you are brave enough to post this. I think there are so many of us that suffer silently and never complain or share it on our blog. I live with pain most of the time-and will eventually go into remission again (fingers crossed). Mine is like having tendonitis over a lot of my body. I do not fall into the fibro diagnosis because I am missing some of the markers for it and have some points that are not considered part of fibro. God bless you...I keep you in my prayers for a release from your pain.

    I will be interested to read what kind of feedback you get on the CBD. I am a little bit afraid of it for some reason.

    Have a great Sunday- Love ya- xo Diana

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  6. Kris, since we have been emailing privately back and forth about this, there's nothing more for me to add here except that I hope you do indeed at least give the CBD oil a try. You have nothing to lose with that - it's worth a try. It's greatly helping my anxiety. I am so sorry that you're suffering. I hope you find relief. Much love and {{hugs}}.

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  7. I would be interested in hearing this too. I was diagnosed with rheumatoid arthritis about 4 years ago. I was put on Humira and took it for 2 years. I weaned myself off and now the pain is back. Sending hugs.

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    1. I also have fibro and RA. PLEASE realize that with RA if you dont treat it IT will continue to do damage, it will never stop. I cried when I first started taking my meds, as the side effects are horrible. I can tell you it took me a while to find one thats works well for me and doesnt effect my kidney, liver, pancreas and BP. Find a good rheumatologist and keep looking and continue with your monthly blood testing.

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  8. Oh My Word, I am so sorry to hear this. I don't have any ideas or help, but I will keep you in prayer.

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  9. Dear Kris....my sister in law has dealt with this issue for years. She is on hardcore drugs for pain relief. She is messed up, to say the least. I don't think she's ever tried any alternative ways of dealing with her illness. YOU, are amazing! reaching out for answers, other than the conventional way to cope with your illness. My daughter uses the CBD oil for migraines. Over the holidays I was having issues with the Crohns Disease, and she had me try it....I was amazed at how much better I felt in the short time I was at her house!! I am currently checking into the oil myself for relief of symptoms when the Crohns decides to act up. I think you are on the right track, seeking other alternatives, Kris. I see where my sister in law is now, and it's heart breaking to see how she struggles everyday! Praying for you. Debbie xo

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  10. I have no tips for you ~ just lots of love & hugs. I'm so sorry you are having to go through this ~

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  11. Kris, when I was dealing with Fibromyalgia, I used Willow Bark (drops) at the suggestion of my Naturopath. It worked so well that I still use it when I get the occasional headache. Just one suggestion for you if you haven't tried it yet. Available over the counter. Best wishes to you on your journey. X Chy

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  12. I'm so sorry you're going through this. I think this is a great idea to post about it though. Blogs can be so helpful in that way. I hope you get some great advice in the comments. xoxo

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  13. Me again. I messaged both my cousin and a friend who have fibro; my friend also has RA. I told them about what you were going through (I didn't mention your name) and asked what they do. Here's some things they both collectively suggested: make sure you're taking enough vitamin D; get lots of sleep; gentle exercise such as yoga (even chair yoga) or tai chi; stretching and walking; massage; acupuncture; make sure you're eating a healthy diet - no junk or fast food. My aunt is gluten-free; she said gluten gives her flare ups and makes her pain worse. I know other people who have said sugar makes their pain worse as it's very inflammatory. Hope some of this helps, Kris! xoxo

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  14. Darn it, hit send too soon. One more thing - I personally know a few people who smoke medical marijuana. It does not necessarily get you high. They custom make it according to your doctor's orders. There are different strains and different levels of THC. You can get it without any THC at all, in fact - just CBD. Other people need that little bit of THC for what ails them. (The young man I know that is prescribed medical marijuana needs it for his extreme pain of Muscular Dystrophy.) Something to talk about with your doctor!

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  15. Kris, I am so sorry you are dealing with this and the stress of taking care of your mom probably doesn't help either. I hope you can find relief soon!

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  16. I have been using CBD cream for extreme knee pain and it works. It's expensive at 80.00 for 2 oz in my area ( just legalized 4 weeks ago ), but in my opinion well worth it. Prayers for relief for you!

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  17. Bless your heart Kris! I will be praying for you! I've heard wonderful things about the CBD oil. My sister uses it but has to buy it out-of-state because it isn't legal where she lives. I do hope you find something that works. I know the medical marijuana isn't something you would like either, but I know it does help people. One of my sons uses it to control his seizures. Small doses. Love and hugs sweet friend! <3

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  18. I'm so sorry. My sister in law does the cream for her back and she finds it is working. I was dealing with chronic pain all summer and fall. Airrosti Therapy helped me. It's a combination of deep tissue massage for tight muscles, chiropractic and exercises and stretching. I know that the initial cause of my pain was probably arthritis but muscle tension exacerbated the issue and cause more pain that radiated everywhere. CBD oil was one of the things I was going to try but Airrosti worked. They have clinics all over the U.S. but I think they are based in San Antonio. Praying for you Kris. Pain is so discouraging.

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  19. Hi Kris, I'm sending lots of prayers your way and hope you find some relief. It's difficult to have a condition where there doesn't seem to be a lot that can be done. Wishing you some answers to ease the pain, Jane

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  20. Kri I am sorry to read this. You and I have spoken about many things and you never gave me the feeling of you going through this. I know someone who suffers from Fibromyalgia. She takes Lyrica and it helps her very much. Suffering from MS I know stretching is everything. I use a Pilates reformer everyday that I purchased from QVC 15 years ago. My MS doctor says it's the best form of exercise for these kinds of problems. it focuses on elongating your muscles and strength. It's also good for you mentally. I too take vitamin D. I also take Biotin, Probiotics and eat a lean protein diet. Too much sugar, carbs and alcohol can make muscles and joint stiffness.

    Another thing is getting enough sleep and drinking tons of water to keep impurities out of your system. I also eat organic everything including dry herbs and spices. No aspartame. No diet drinks or low calorie sweeteners . Very bad for illnesses related to muscle and immune systems.

    If you enjoy beef limit it to once a week. Some doctors don't feel diet is a contributing factor but suffering from this for as many years as I have these are all the things that have made a big difference for me.

    Hang in there and I am here

    Cindy

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  21. Kris - so sorry to hear this. Don't have any advice but will be praying for you. I put your name on my bathroom mirror and every time I see it or think of you, will ask the Lord to relieve your pain. Love ya!

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  22. I recommend you check out Magnesium supplements and a Keto type diet. My oldest daughter was diagnosed with fibromyalgia and the doc put her on Keto diet. My youngest daughter (38) was diagnosed with rheumatoid arthritis and while waiting to see a specialist someone told her to see a naturopathic doctor (NA) who took tests and put her on low carbs, which is pretty much Keto. My husband has gone from a terminal cancer diagnosis in June to being pretty much cancer free by Dec 19. He too used low carb meals as cancer feeds on sugar. I experienced arthritic type pain in my hands and doubled up on the mineral Magnesium. My hands are almost back to normal. A lack of Magnesium will send your body out of whack because vitamins like D and C need Magnesium to work. Good luck.

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  23. I'm so sorry to hear that, Kris. It must be exhausting to deal with these symptoms and I hope you'll find a treatment that doesn't leave you in a brain fog and with memory issues.
    Sending you a big hug,
    Julia

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  24. My dear, dear friend,

    I wish I could help you here, but I have NO idea what would be a good remedy, but I totally support your effort to look for more natural and less harsh treatments. I am a believer in exercise, good nutrition and the least amount of chemicals possible. I know you are on the right path in seeking something more gentle on your body and mind. I LOVE however, how you charge through life anyway, no matter what the pain. May this pain LEAVE you as you keep finding a way to sooth it away.

    MUCH LOVE to you.

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  25. Dear, dear Kris ~ I am so sorry to read this news. I think it is worth trying the CBD oil. The poster at Riverside Cottage had some good suggestions also.

    You will be in my prayers. Sending you love & hugs also ~ FlowerLady

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  26. So sorry to hear about your pain Kris. I wish I had some magical potion to recommend to you... What I do every day is meditate and it particularly helps me in times of great stress. Be well my friend! xoxo

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  27. I am sorry you are suffering with pain. If you google "Essentrics Pain Relief Workouts" you will find Miranda and Sahra Esmonde-White's website that includes sessions specifically for relieving chronic pain including fibromyalgia. (It's not yoga) I first heard about this on PBS. Miranda has also written a book about ending chronic pain. I hope you find relief to your pain soon.

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    1. Thank you for this suggestion. I ordered the pain relief stretches thru Amazon. I have fibro and RA and will try anything

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  28. While I have no good suggestions for you, my heart goes out to you and I hope the above suggestions will help you. I love your blog. Please take care.

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  29. I'm sorry Kris. Having constant pain is no fun and the side effects of drugs can be scary. I don't have any insight for you but will pray you get the help and relief you need.
    Hugs, Cecilia

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  30. I've had fibromyalgia since I was a smallll child but it wasn't diagnosed until I was sixty (I'm now eighty.) I've tried every med recommended for FM and none worked for any length of time. I am addicted to alprazolam (one tab a day!) so stay away from that if you can. I take hydrocodone (min. dose) four times a day when it gets bad and use Voltaran (cream) on the spots that hurt. So far no addiction issues with it and the doc monitors me closely. I finally found a doc who understands FM and didn't just show me the door. I take extra D3 and B12. I try and eat breakfast (a LOT of eggs!) and lunch daily but if I'm not hungry, skip supper. I'm mostly keto--eggs, chicken, beef, salmon. I try to avoid grains as much as possible. No preservatives, colorings or flavorings (Aldi's is my go-to grocery for eggs and staples because they've taken that stuff out of their foods.) No fast food! Watch your stress level! Very important! As much as possible cut out those people who are not supportive including family. I'm a widow and children are married and out of town. I do have friends I can count on. Get enough sleep and if this means you need a nap or more during the day, so be it. I do drink coffee, limit is two cups a day. Dairy (except for the milk in the coffee) is intermittent. Dairy seems to bother some people with FM. I'm on the fence with it. In 2016 I decided I would paint a small table and found I enjoy it. I've painted myriad chairs and small tables since then. (I lovvvve your blog!) I've not tried CBD and don't intend to until it stops being
    a "buzzword" solution and more research is done. Just keep your ear to the ground, listen to your body and keep on goin', no explanations necessary. Those who love you will understand. Those who don't and feel the need to comment, lean 'em aside. Best to you!

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    1. Thank you Charlie for you input. This autoimmune disease is a hard one. Since they cannot figure out what causes the nerves to over react and flare up severe. I think there is not one thing for everyone. I think we are all different and have different triggers that cause the flare ups. That is the hard part you have to figure out what is causing your fibromyalgia to flare up. You seem to have figured out what works for you. That is awesome my friend. I want to get where you are with this. My doctor is great. She is into listening and helping me figure out triggers. I tried the restrictive diets and nothing seemed to change with that. I do watch my carbs and the sugars but I am not all the way keto or any of the clean diets. Just not for me. Since I found they really do not help with the firbro either. I have a great support system so that helps too. Thank you for coming by today and leaving your wonderful information. OMG to be 80 years young and taking such good care of yourself. High five to you. Take care and again thank you for all your wonderful information. I soooo appreciate you taking this time for me.
      Kris

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  31. Good Morning Kris
    I am so sorry you are going through this. I was diagnosed with Fibromyalgia probably 25 years ago. I am in constant pain day and night. Can't stand, sit or even lay down sometimes, I almost never get more than 4 hours a sleep a night but I started going to a natural doctor and she has me taking ginger capsules and tumeric capsules. I take them 3 times a day. I also do 5 to 15 minutes of exercise first thing in the morning. I do arm weights and tredmill. If I feel like I can only walk 2 mins than that is all I do. If I can do 10 mins thats great. I also dont eat sugar anymore or many carbs. I do have a tiny bit of raw sugar in my tea but just a tiny speck. I think that foods can make us feel better or worse so maybe you have a flare up food? I love popcorn and I noticed it really bothers me so I only have it once in a while. Not sure if you get the pain at night in your head/neck but I do almost every night but I found a neck collar thing that blows up that really helps me a lot. I will keep you in my prayers Kris. Try natural for a while and see how you feel. I also take oregano oil, its great for inflammation. I get mine on Amazon, be careful if you get that though, they are not all the same, if you decide to get that email me and I will tell you the brand I get
    good luck Kris
    love deezie

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  32. Hi Kris, I'm glad to see that you decided to share this on your blog. We've shared many times about our struggles with our autoimmune diseases, mine being RA and of course your fibromyalgia. I'm so glad to see the great responses with some very helpful info from others. I wish I had a magic solution for you, myself and others who suffer from widespread pain and other symptoms. Its' hard to explain to people who don't suffer with it. Many people who are blessed by not having joint and tissue pain simply don't understand because it's not so visible as some illnesses. It's a mental adjustment too, because our lives are so affected. It's hard to give up doing the things you love to do, or being severely limited in doing them. The joint that works okay today might not work tomorrow. As I've said before, many people who don't suffer from these types of diseases simply don't understand how it's possible to hurt in so many places at once, and hurt very much. I wish they were right! It's easy to pass judgment on what you don't understand. I'm glad you've received some helpful suggestions; I've written down a couple of suggestions to look up myself. I hope you find help for your pain and fatigue, whatever that solution is for you. As always, best wishes to you - and others who have expressed similar problems. May we all find some relief, compassion and support.

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  33. Kris, I REALLY NEED to convince you to try yoga. I wasn't a yoga girl, either, (or so I though)....Until I really gave it a try. My doctor MADE me do it, and I'm so glad she did. Doing yoga has been the single best thing I've ever done for my health, pain, movement, and weight. I started in June, and you would not believe the difference it has made. And I have not done anything else exercise related. I want to start walking more maybe when the weather improves.

    PLEASE get in touch with me, and I can help you with yoga (how to get started)... My friend who suffers from fibromyalgia SWEARS it has saved her. She encouraged me when my doctor made me start. I don't have fibromyalgia, but I do suffer from three autoimmune disorders.

    When I first started yoga, I couldn't even do half the poses, binds, and other moves....I sat in the floor and cried the first month. But then I got better, and stronger, and thinner!!! Plus I feel great!!! I can do stuff that I didn't feel like doing before. I have so much more energy, and my brain fog is much better, too. PLEASE email me and let me call you or something. You won't regret it. I will be your cheerleader!!!

    xo,
    RJ

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    1. Ricki Treleaven - could you reply here again about how to get started with Yoga? My town doesn't offer any yoga classes anywhere! I too have Fibro... haven't responded yet to Kris but will. I KNOW I need to do yoga as have been told and read countless times that it is the BEST thing for Fibro and the pain, stiffness, etc. Stretching is the second best thing, which I do, but not as much as I should, and this blog post reminds me to get back to it! Would appreciate help on how to start with yoga, who is best and maybe someone who specializes in Fibro. Thanks! Marilyn
      my email is pinkpapercottage@yahoo.com

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  34. Kris, I am so sorry to hear about your health situation. You are so right, autoimmune disease is a tough one. My mom had hepatitis triggered by her own body. It did do a lot of damage to her liver,but the good new, the liver does regenerate. I have friends that do use the CBD and they do swear by it. My neighbor also uses it for her arthritis. I think it’s worth a try. Much better than being on some of those awful chemicals. Lots of prayers and healing thoughts as you fight this disease. Taking care of your mom is a big challenge. One that I personally know, because I care for my mom. Do keep us informed. I hate to hear you are suffering. So glad you shared your personal problem with your readers. Big hugs, Linda

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  35. Hi, I'm sorry to hear of your troubles. I so relate because I was diagnosed with MS in my mid forties but I think I've had it since my mid 20's and I'm 70 now. The flares were manageable for a long time but in my early 50's the pain in my legs & feet became unbearable. The only time I had any relief was when I was in a hot tub but while that helped with the pain the heat made the MS symptoms worse. I never could take pain meds because they spiked my blood pressure so the doctors wouldn't prescribe them. I guess I was fortunate with that even though at the time it was really difficult.

    I was literally at the end of my rope when I stumbled onto a natural cures health book. There was a recipe in the book that was made popular by Paul Harvey back in the 80's specifically for arthritis. But pain is pain. What did I have to lose? I tried it. The most amazing, awesome pain relief came with Gin Raisins. You can Google them. I consider Gin Raisins to be a personal miracle.

    I've been eating a spoonful every day for almost 15 years now and as long as I do there is no pain. Some days I when I overdo (as most of us are prone to do) my feet will bother me so I use almond oil with the essential oils Oregano and Frankincense on my feet and that usually takes care of it in a few minutes. So I no longer worry about “my productivity disorder” causing me pain.

    Also another thing I found years ago that helps so much but is often overlooked.....good shoes with insoles. I wear Vionics almost all the time because I've found the fastest way to nowhere is wearing a “pretty” pair of shoes that don't initially seem to bother me but I notice in short order that I am barely walking and they just drain my energy almost immediately. I suppose that because your feet ground you to the earth it makes sense that they will completely affect your energy.

    Almost all of my friends eat Gin Raisins to eliminate their pain in all parts of their bodies. It doesn't seem to matter where the pain is or whether it is caused by one of the autoimmune illnesses. Friends with torn ACL's, frozen shoulders, bad knees, etc eat them. The pain just goes away. This is not a quick fix per se because you have to make the raisins, let them marinate for a few days and then eat them. You will notice after a few days of eating them that your pain just slowly subsides. Consistency is the key.

    At 70 after all these years with MS I do pretty well. My balance is not the best and I have essential tremors in my hands but all in all I'm ok.....because there is no pain and no side effects. I can garden, work on projects with the best of them.

    Sorry for such a long story but maybe it will help someone!

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    1. Jan.... thank you for the wonderful information! I also have Fibro and pain... I'm going to answer Kris shortly with the things I do, but I've suspected for awhile that I might have MS too, or rather than Fibro. One thing I just discovered is Voxx Socks and insoles. I follow a blog called Tiny House Prepper that I love. Elizabeth has had several strokes and her balance has been awful.. she could hardly walk without hanging on to a cane or her husband. I guess the Voxx socks have made a huge difference in her life! If you go to their channel, she has a fairly recent video about them with a link to the website. I too have some pretty bad problems with balance (due to I'm not sure what).. and I just ordered a pair of the socks. I want to see if they help with my balance. There are TONS of testimonials on the Facebook page for Voxx Life or on their website... and many of them are people with MS who have seen absolutely wonderful results with the Voxx socks. I'm anxious to get mine! My legs just don't seem to want to work very well and I see from the testimonials that the Voxx socks have really helped. Just thought I'd reply to your comment, and hope you get it! Marilyn
      my email is pinkpapercottage@yahoo.com

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  36. I was diagnosed with Chronic Fatigue Syndrome/M.E. 19 years ago. I was lucky and able to see a Professor who specialised in this (based in Cornwall UK, where I live). He had been doing research into this for many years and gave lectures all of the world. The first thing he told me was - there is no magic cure. He said that I must be a high achiever (which I was) as lazy people didn't get it. He arranged for me to see one of his team, an Occupational Therapist and she taught me to pace myself. Initially it was 10 minutes of an activity and then an hour's rest. So very hard to stick to. Eventually the allowed time of activity was gradually increased. It's also important to stick to a routine of getting up at the same time each day (if it's possible to get out of bed, as some days it is not). Eat healthily. Take vitamin C and vitamin D. Use relaxation tapes (which are available on line, although she did provide me with some of hers). This relaxation should be done twice a day, but it's important not to fall asleep. The relaxation is important, as it relaxes your body and your mind. Even is you are watching tv or reading, it is using your brain - so it's important that your brain has some total rest during the day. Never stand, if you can sit down - which is most important, as you need to 'bank' all of your energy, for doing other things. Gradually over many years I have learnt to live my life with this illness, as it will never go away, but it can improve. I use a walking rollator, this has a seat (with a bag underneath for carrying things). Then when I am shopping and want to look at anything, I can sit down and rest. There just isn't always a chair available when you need it!
    I do hope that you find something to help you through this illness. Thank you for sharing this with us all. Sending love and supportive hugs xx

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    1. Thank you for sharing your journey with CFS. I hope by everyone sharing on my post we can all figure out more natural ways to calm down our pain and fatigue and live more comfortably. I appreciate you sharing this. I have started to do some meditation that seems to help me too.
      I would have personally contacted you by email but I did not have one for you. So I will thank you here.
      Hugs,
      Kris

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    2. Ah thank you Kris. How do I let you have my email address for the future? Do I need to put it on here, or is there a more private way to do this. Thanks Gilly x

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    3. You can just email me at kmvavra@comcast.net and let me know what your email is.
      Thanks
      Kris

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  37. I'm glad you are sharing on your blog.

    I was just reminding Steve the other night that it was from a blog post I wrote about my issues that you said you thought I might be anemic. My doctor missed it completely after 5 months, but you spotted it from my blog.

    My cousin makes a balm with CBD oil and I use it when my arthritis is really bad. There is absolutely no high to it, but it definitely gives me relief. It is all natural and I don't know if those you buy are. I wouldn't know where you could buy it.

    At our 70th birthday party in Catalina, she gave each of the 70 year olds a jar of it. But, she doesn't sell it. It is legal here in California.

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    1. I would very much appreciate if you could ask her for the recipe for the balm. I can buy CBD oil but have not seen a balm. I have bought Voltaren at our drug stores but it doesnt help at all. Would also appreciate a good name for a good CBD oil. I can be emailed at nmesch4@gmail.com

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  38. https://www.prohealth.com/library/the-fibromyalgia-diet-eating-for-a-better-quality-of-life-20084
    I have inflammation pain in my muscles and joints and I find this way of eating greatly reduces that. Some good youtube sources are Dr. Jason Fung, Dr. Eric Berg, Dr. Annette Bozworth (Dr. BOZ) Dr. Mindy Pelz. Yes, it's a keto diet but dont freak out until you listen to the Drs. I especially like Dr Fung. Good luck to you, Kris. Keep us posted. Regards, Mona.

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  39. I'm sorry to hear you are dealing with this, Kris. Autoimmune diseases are so tough and then to have medication side effects, too. I have several autoimmune issues and have had a hard time with treatment as well, due to side effects. Voltaren has been my go-to anti inflammatory...I haven't tolerated much more without liver problems. I have been thinking of trying CBD oil, too...I have a relative who has had good results with it. It's expensive for quality stuff, though. It is good to read the comments you are getting and other people's experiences. Hope you find some answers that work for you, sweet friend. xo

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  40. Chronic pain is certainly a big hindrance in life. I tried some of the CBD someone gave me that didn't have the high chemical. But mine is nerve pain and it actually made it worse. I know many swear by it though.
    Brenda

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  41. I had a friend who suffered with this and it was so difficult for her, yet she kept such a good attitude. Not sure I could.

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  42. Oh Kris, you poor thing, I can't imagine being in constant pain like that. Granted, I have my aches and pains, I'm surely not as young as I used to be....and I certainly forget plenty as well. Hope you find something that works for you without the brain fog!! Sending hugs and prayers! xo

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  43. Oh, Kris. I am so sorry to hear you are in pain. I had no idea, as you say, you are a very "up" person. Probably if you weren't you might be much worse. I just can't believe it and so sorry that I have no good advice for you. I have been reading the comments left for you and sounds like there are so many out there suffering from some kind of pain, and they all seem to have good advice. I would try the oil. Can your doc give an OK for it. It is hard to know what is legal and what isn't some times. I have chronic back pain now. It has gotten worse and sometimes it takes me a long time just to make the bed. I have to sit and rest. Anything where I have to bend over seems to trigger it, I can't do any gardening anymore. Because of the blood clot in my leg that I had about 8 years ago, I am on warfarin. I can't take anything for the pain as it messes with that. Because of the blood clot, I lost 3 toes on the right foot and it seems like the nerves are just laying there open. Although it is not constant, when it flairs up I can sympathize with your nerve pain. I hope you can figure something out to help. I am sending hugs and love your way and, again, am so sorry that you are having to go through this..xxoJudy

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  44. I was diagnosed with fibromyalgia several years ago and then chronic fatigue syndrome more recently. I just had a doctor tell me to increase my Vitamin D 2,000 units daily in addition to what I had been taking, which was 2,500 units. I had always just thought I was taking it just to support my calcium intake, but after taking 4,500 units daily for about a month I now find my joint and muscle pains seem to be decreasing. I still need a lot of sleep and my endocrinologist says this is exactly what she prescribes! Hope this helps.

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    1. Hi Teddee,
      I am taking 5000 iu's of Vit. D daily and have been doing that for awhile. That helps with the fatigue but not my pain. I am so glad to hear you get results with just taking Vit. D. That is so awesome. I have issues with sleeping with my CFS and Fibromyalgia so that is a big issue too.
      Hoping I can get some healthy and more natural answers to help me. Thank you for your imput.
      Hugs,
      Kris

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  45. Oh, Kris, I had no idea you were in such pain. like you say, you are such an "up" person, that I never suspected. I am so sorry. I have been reading the comments left for you and it seems there are so many people dealing with pain and they have some very good advice. I'm sorry that I don't have any advice for you. I have never tried anything natural. Since I had the blood clot in my leg 8 years ago, and had to have the 3 toes on my right foot amputated because of it, I have been on coumadin and I can't take any pain meds because it screws with the blood thinner. I am now having what seems to be chronic pain in my back. It takes me quite a while to even make the bed anymore as I can't lean over without pain. The nerves in my feet since the amputation feel like they are right on top of the skin, so I can sympathize with the nerve pain. To feel that all over my body, would be horrible. I hope you can figure something out. The oil does have good reports. Would your doc OK that? You never know what is legal and what isn't these days. I am so sorry for your pain, wish I could offer something of use, just my love and support..This is the second time I typed this and hope it goes through this time. In case you get two you will know why..Take care dear friend..xxoJudy

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  46. SO sorry to hear this. I take Gabapentin for neuropathy and it has a lot of the same side effects. I am testing CBD oil too, but it is expensive. I'm pretty sure you can get medical marijuana without the THC in it just as you can for CBD oil. Hope you find some good results. xo Laura

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  47. Hello Kris,
    I have a friend who suffers with the same. Her name is Leslie, she was my supervisor at the Office of Aging. She recently resigned. I know she met with a Nutritionist named Karen Hurd who heals thru diet http://www.karenhurd.com/ ..
    please keep us posted.. Love, Carla

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  48. Hi Chris, I don't have Fibro but I have CFS. Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by extreme fatigue or tiredness that doesn't go away with rest and can't be explained by an underlying medical condition. ... CFS can affect anyone, though it's most common among women in their 40s and 50s. I tried CBD oil and it did not help me with the fatigue but helped me sleep deeper. My hubby wants me to try the cream on my shoulder and arm which is probably from something else. I want to suggest that you look on facebook for this support blog by Clarissa Shepherd , Fellow Travelers Support and Chat (FMS, CFS and ME). I don't agree with everything and I don't have it as bad as some but she has some interesting articles being done on those things that she posts sometimes. I read all I can to try to learn what may help me and take a lot of vitamins. Thank you for sharing as I always felt you had lots of energy with all the beautiful things you do. Nancy

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    1. Thanks Nancy for this information. I will check out Clarissa's FB. CFS is harsh and I feel for you. Sorry the drops did not help much. Thank you for all your help and concern. It is so appreciated.
      Hugs,
      Kris

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  49. Oh Kris, I didn't know! I'm so sorry for your pain and suffering. I too have suffered with Fibro for 20 years. It just hit me in January of 1999 all of a sudden.

    Well darn.. I've typed a huge long "book" on all my experiences and what I've done to help me.. but it's just too long and I keep trying to cut it down, and I've cut out all the important stuff now! So will just email you!

    For others here: Source Naturals Night Rest helps me IMMENSELY with a calming natural sleep. 10,000 IU of Vit. D3 per day helps with energy. Stretching every day, at least 45 minutes.. down on the floor stretching.. walking alot, more than 20 min. at a time, chiropractor, here are specialist chiropractors who know about Fibro. EFT, which is a meridan tapping technique and helped me get off of the very addictive drug Ativan for anxiety. EFT works! Check you thyroid ladies! Most docs don't even know how to read the test. Get a good naturopath to help you. When I finally started on ?Armour Thyroid, I felt 500% better in 5 days! Dr. Berg is great! YOGA would help and I"m going to start doing it in 2019. NO RX meds for me.. lots of ice for the pain, and stretching helps even when in pain.

    Way more Kris.. but I'll email you!
    Hugs.... and blessings.......Marilyn

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  50. Hi Kris, normally I would read all the comments to see if anyone left something similar, but I'll share with you my own bout with Fibromyalgia diagnosis. I was miserable and needed medication, given Gabapentin but hated it. just "drugged" me. My autoimmune symptoms kept getting worse, then diagnosed with Gluten Intolerance. Once I got off Gluten my Fibro symptoms have mostly gone away. I read an article that said Gluten was the biggest cause of Fibro. My pain is so much better, and I take Plaquenil that helps all my AI issues. I think Fibro is basically an Autoimmune Disease that doesn't get diagnosed. Hope you get some better help soon, Kris. I totally understand what you're going through. xo Deb

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    1. ps Medical Doctors won't mention Gluten as an inflammatory cause. They are pharmaceutical based. Once off Gluten not only did I feel 100% better but also lost 30 pounds that wouldn't come off before.

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  51. Hello Kris, so sorry to hear about your problems.
    I have had much help from mindfulness in times with troubles with my health. It is a lot of litterature about this. This is something that takes time to "learn", but then it stays with you forever. I also believe in yoga.
    I am a nurse too, I have heard of medical marijuana, and that it can help people with really hard pains.
    Hope you can find some help,

    Hugs, Ida

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  52. Hello Kris. I buy my CBD oil at an Amish store here in Ohio. It's a place that also sells spices, knick knacks, Etc. You just put a dropper under your tongue and let it dissolve. It has helped.

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  53. Kris, I had no idea! I suffer from many of the things you mentioned and it can be so hard functioning on a daily basis. The biggest thing that works for me to eliminate the pain is avoiding all grains, sugars and nightshades. Hard to do! But those things send my pain to the ceiling, especially if I indulge a lot. Low carb eating is a good way to avoid them most of the time. I hope you find answers that work for you! Just as an example, I normally must take ibuprofen every day in the mornings and at bedtime or I can't do anything (and they only help a little bit). Since going back off of grains, especially, no need for ibuprofen! At. All. I'm not 100% pain-free, but my 85%-100% pain level is now at 15%. I can live with that! Does arthritis run in your family? It is on both sides of mine, and I think my pain is mainly due to arthritis, although I think my thyroid is causing some of the trouble.

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  54. Hi Kris,
    I'm so sorry you're dealing with this problem! I haven't experienced it, however, I have 2 friends that are. Turmeric is highly recommended...use high quantities in smoothies or other food. Eliminating gluten, dairy and grains from your diet will help eradicate the inflammation. Any form of wheat, yeast, etc., causes inflammation and that, in turn, causes pain. Also, I saw this today...says kinda the same thing.
    http://www.emergencyemail.org/newsemergency/anmviewer.asp?a=10864&z=58

    I know you've received a ton of suggestions and I so hope you can find relief!

    xo
    Pat

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  55. P.S.
    Not sure how or why I forgot this but eliminating sugar is a must too! It is the most difficult for me so I wish you good luck! :)

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  56. Hello Kris, oh I'm sorry for your health and that you are dealing with pain. I really hope that you will find a solution with your doctor to relieve your pain you are dealing with. I will pray for you. Sorry but I don't have any suggestions for you.
    Hugs, Julie

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  57. Kris,

    I am so sorry to hear that you are going through this. This post by Laurel at The North End Loft blog was a game changer, actually LIFE changer, for me:

    https://www.thenorthendloft.com/2014/02/the-story-behind-my-food-allergy-test.html

    I hope you find the answers you need. I will be praying for you!

    Melanie

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  58. I am sorry to hear you are dealing with this Kris! I've never been tested but often wonder if that is my problem too. Some days I have to take the stairs one at a time because of stiffness and pain. As I sit here typing this I have a heating bad on my back, the way I start every morning, because of muscle pain. I used to work for an acupuncturist and she treated many patients with fibromyalgia with acupuncture, cupping and herbs. Sometime to think about. Sending hugs your way xo

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  59. Dear Kris, I’m just so sorry and sad to hear this. Living with chronic pain is so awful. My husband has had three strokes due to a blood disorder and he lives in pain on his right side. He does go to pain management clinic monthly. I have a friend Who also lives in pain and she gets massages and does Pilates with a personal trainer and just never fails getting those treatments she’s in a motorized wheelchair and has been for years but that’s what keeps her moving is the Pilates and massages. I have an auto immune Disease, Vasculitis of the kidneys and I know how hard it is to keep going. Your positive nature is a blessing. I’ll be praying for you and hope you can find some relief from the constant pain. Take care, sweet friend. Thanks for sharing. XO
    Blessings,
    Nancy

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  60. Kris, I'm so sorry you are suffering with this, I hope you receive some helpful ideas so you can cope with it without so much pain. I have fibromyalgia also but not to the extent that you have. The only tip I can give is not to overexert yourself, it makes it so much worse. I take gabapentin which is like Lyrica and while it helps a lot I have also gained a ton of weight while on it, ugh. Praying you get some relief. Hugs and prayers to you.

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  61. That is so very hard to cope with. Would have commented before but my Internet has been down. Do hope that you find an alternative. Thinking of you and wish you well.

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  62. I have fibro as well as 7 bulging discs from my cervical to lumbar areas of my back, chronic inflammation of the SI joint and sporadic sciatica so I know your pain. I've tried every medication known with horrendous results, I have lots of side effects so have just quit taking them and now only take celebrex. Massage and swimming in warm water help. Walking through the pain also helps keep joints from rusting completely. :) I have tried some CBD oils with limited help and am waiting for Florida to get its act together and get medical marijuana available without the hassle. The voters approved it with over 60% approval a few YEARS ago and the legislature has done everything in its power to make it as difficult as possible. I'm just praying for something, anything to work. Massage helps me the most at this point but is not covered by insurance. I had pretty good results from accupuncture but ditto on the insurance probs. All I can say is hang in there. It's a life long issue and some day there will be help. More funding is needed for research and we need to keep writing letters to our legislature and to big pharma. I intend to be a squeaky wheel for as long as possible. Hugs, big hugs...I wish I could do more.

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  63. Since you mentioned the pain is so terrible in your lower extremities, I am wondering if you have ever tried compression socks. The ones with copper infused have helped me considerably for foot pain. And some how with the relief of the foot pain all the other pains seem to be less intense. Acupuncture was also something I found relief of pain when my sciatic was so inflamed prior to my hip replacement. Maybe there is some techniques that are known to be helpful for fibromyalgia. Worth some investigation as a non medicine form of therapy. I love to take advantage of any holistic things available vs taking meds if the side effects are prohibitive. I hope you are able to find some paths of potential remedies via you followers comments.

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  64. I am so sorry that you are going through this.
    I just recently got diagnosed with Fibro.
    Finally I have a direction.
    I am seeing a Chiropractor who is a Fibro expert.
    For me Temperature changes and over doing it brings on the worst flare ups.
    I am being told to eliminate sugar and glutens.
    It is already helping and gentle chair yoga.
    I cannot believe lately how many Woman are dealing with this.
    I also started Lyrica the week befire Christmas and it has helped me so much with intense nerve pain.
    I wish you well and I will pray for all of us who suffer with this.

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  65. I am so sorry you suffer from chronic pain! Have you tried a pain management physician? It's sometimes a wait to see a good one. I don't have your diagnosis, but they also use homeopathic alternatives as well. For example, I found TMS is one thing out of several things in a "bag" that help me. The first unit was cumbersome and didn't work that well, but I wanted one for a trip, and a found a portable from the drug store, and it was amazing, because it had a setting that for some reason was particularly disruptive to the my type of pain, and now I use it more. As you have learned, it is just trial and error, and what works for one person doesn't work for the next. So you have to have a bunch of things to resort to in your daily life. Oh, have you tried a weighted blanket? A relative has SPD, and it is difficult to get this kid to try things, so I had to be one of the triers in the approach. The strange things is I felt it make me feel better at night. I still have not bought one for myself because it is expensive. You can get an inexpensive version at Target, but this one was weighted to size and paid more to get white, not a "kid" color, and a return was allowed. Weighted and compression things are out there ; you have to search for adult versions but some things are inexpensive. Who knows if it would help? Squeezing things for the hands... Slow rise silent squishy that can be hid in your pocket... I mean these are for sensory issues, not yours, but I just threw it out there, just in case they could be a disrupter, because they are inexpensive. Pain is the worse thing. I hope you can find more things to work. xoxo Su

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  66. I wondered when I saw your title if it was fibromyalgia. I have suffered with that since I was 28 years old. I had small children and thought I was dying! After many dr appointments with no solution I finally found one who diagnosed me! It was the best day of my life! He started me way back then on Amitriptyline (low dose) and it was adjusted over time. I felt like a new person. It has worked for the most part over the years, but I still have major flare ups when I feel like I’ve been hit by a Mac truck. I have not tried to get disability, but I’ve heard it’s very hard to get with this disease. I pray you find some relief that works for you Kris! I’ve been toying with the idea of using cbd oil as well. Take care!! Hugs! ❤️

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  67. Kris, I have been a bit out of touch, so I'm just catching up now. I know you've been suffering and I'm so sorry. It looks as if there are a lot of people who have some great suggestions. I hope that one of them gives you some relief. I'm thinking of you...xoxo

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  68. I have also suffered from fibromyalgia, at times severely. Years ago, I came across a medical research article about a supplement called Magnesium Malate. The article said the illness was from the body not flushing out aluminum sufficiently and building up to toxic levels. This supplement, taken daily for one or two months, will flush out the built up aluminum. The aluminum can be most readily found in commercial bread products. I cut out bread, except healthy versions at health food stores. You know it worked!!! I no longer suffer like I did and the pain and exhaustion went away. Of course, always check with your doctor before starting a supplement, but if he or she gives the go ahead, what do you have to lose?

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  69. Hi Kris- many have found relief from Essential Oils. I use DoTerra Essential Oils. I just saw a testimonial of a woman who has had a paralyzed hand all her life. That come with terrible pain. She used 3 drops of Doterra Copaiba Oil and within 1 hour she could open her hand !. After continuingg to use Copaiba, she has less pain and can move individual fingers. This is an amazing testimonial and all from using a natural treatment. Doterra sells the most trusted and effective oils out there. I use the oils for anxiety and depression-they have made a huge difference in my life. I can help you get started with the oils. You can learn more at

    my.doterra.com/naturesoildrops

    . I also want to tell you about Dr. Carolyn Dean- she recommends magnesium and minerals . Her book is The magnesium miracle- we are all deficient in magnesium and magnesium controls over 300 functions in our body. She also has a radio show weekly so I am always learning more about her protocol. It amazes me how it changes people’s lives .

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    1. Hi Tanya,
      Thanks for your visit. I am using an oil called FAB and so far so good. I believe if you get the purest and most organic oils they work well. So thanks for the name of the one your friend is using too. I have been taking Vit. B 12 and Magnesium and ginger root and turmeric. They help too.
      Hugs and thanks for your thoughts.
      Kris

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