Every week I get several emails asking me what I am doing to treat fibromyalgia syndrome. It is easy to see why when considering it takes years to get diagnosed and then years to find a treatment option that actually works for each fibromyalgia patient! The one thing that is so frustrating with having a chronic illness is the “trial and error” phase when you are trying a treatment and you get all excited it is going to work and then the huge let down when something does not meet that expectation. So this post is my journey through treatments that have failed and treatments that have been successful. I would like those of you reading to tell your journey as well in the comment section of this blog post. I think if we all come together we can help others that are struggling to find a treatment option that will work for them!
Our limitations and success will be based, most often, on our own expectations for ourselves. What the mind dwells upon, the body acts upon. ~Denis Waitley
I have to say I am truly grateful for what I know now about the human body and that I know now that the mind and the body are connected and you can not treat one and not the other. I went 12 years just treating my physical body and continued to decline. I was told by my Doctors that it was just the progression of fibromyalgia and that I just needed to accept it. I did for a while then one day I was introduced to the movie “The Secret” which is about The Universal Law of Attraction (Just a basic introduction of it) and it change my way of thinking and made me hungry to learn more about how I can use my mind as part of my treatment. Now I am very careful with my thoughts knowing that “What you think about, you bring about.” Before I knew this all I thought of was how painful my day was going to be! When I changed that one negative thought and replaced it with a positive thought which is gratitude that I have been granted a new day, that is where my healing process began and I started searching for answers!
The best and most efficient pharmacy is within your own system. ~Robert C. Peale
This is me swollen and 60 pounds heavier because of the toxic affects of 12 prescription drugs
When I was first diagnosed I wanted everything and anything to stop the unrelenting pain I was in. So doctors were happy to write me prescriptions and I was happy to take them! Paxil, Bentyl, Norco, Soma, mobic, Atenolol, Hydrochlorothiazide, Topamax, fentanyl patch ect. ect. ect. You would think I would not be in any pain and numb from all of that but it got to the point that the medications became the source of the pain which sounds crazy but I developed rebound pain. The entire time I thought my condition was getting worse it was rebound pain and medication side effect that were making my health decline. So with my doctors help I went off all of the medications slowly one at a time. It took over a year and it was a very painful process. When you have lowered your own bodies tolerance threshold to pain with pain medications, when you come of medications it is like the worst flare you have been in. Eventually my body recalibrated it’s pain threshold and I began to feel better then I had in years. I still have pain everyday but it is nothing like it was!
“Unfortunately, everything the experts tell us about diet is aimed at the whole population, and we are not all the same.” ~ The Scientist Magazine
Every morning I wake up and have a big glass of lemon water. Due to the digestive qualities of lemon juice, symptoms of indigestion such as heartburn, bloating and belching are relieved. By drinking lemon juice regularly, the bowels are aided in eliminating waste more efficiently thus controlling constipation and diarrhea. The lemon is a wonderful stimulant to the liver and is a dissolvent of uric acid and other poisons, liquefies the bile, and is very good for Sufferers of chronic rheumatism and gout. After I drink my tall glass of lemon water I prepare the fruits and vegetables that I will be juicing for breakfast. This starts my day off on the right foot and gives me the nutrition and energy I need for the day ahead. A lot of people have told me they have tried juicing for fibromyalgia and other chronic conditions and it did not help them. You can’t give up so fast! It took you years to get your body in the bad shape it is now. It is going to take a while to start seeing it improve.
My comment was getting too long lol. So I wrote a post about how I cope with Fibromyalgia on my own site
After the pain medication, it is meditation and listening to calm, soothing non-vocal music that helps the most. Basically I try to find things that distract me from thinking about the pain. Most days I succeed.
I am still on the journey to wellness, I’m of the thought that I’ll use the best of western and eastern medicine. Diet is a big challenge for me, slowly moving the family to whole foods – my 2 year old is struggling with this, as is my husband lol. I exercise and stretch every day, use heat packs, got showers and when I need them extra pain meds. Lyrica has been wonderful for my nerve pain without any bad side effects. I also use supplements particularly vitamin d and magnesium. I am also learning to ad mindful and meditate. I’m learning every day, journeying towards wellness.
The fibromyalgia teaches us that we cannot just always pop a pill to make things better. When I first got ill four years ago, I was only offered anti depressents. I refused them as did not beleive it to be the answer to such a complex illness. So, I struggled on through the pain and deep muscles aching, shooting pain and severe twitching, taking regular hot baths, eating well and drinking lots of water. I continued when I could with gentle stetches and 2 years later was able to do yoga and pilates. As a dance teacher this was very important.
A year ago I developed severe insomnia and have been sleeping no more than 4 hours on average for the last year. The lack of restorative sleep has been driving me mad to the point of being suicidal on a weekly basis. Eventually I gave in to trying the anti depressents, along with cherry juice. The anti depressents just made me more wired and I felt worse.
I have discovered that pharmaceutical mess are not for me right now, my body is just too sensitive. Six months ago, I sold my beloved flat Is worked so hard to keep, and moved to the country. Renting has had it stress but it has enabled me to pay for some privates treatment and afford the natural supplements my body has been crying out for. I don’t eat gluten and have cut out other foods I’ve found my body won’t tolerate.
With fibromyalgia, I think we have to be our own doctors until the medical profession understands that pills are not always the answer for everyone. Eventually when I can work again, I might need to start taking meds for extra support, but until that day I continue without. I have listened to my body. All I asked my doctor for in the beginning was someone to talk to as that is what I needed, but he could only offer pills. I had to wait a year for a person. If I’d had that at the beginning I woudlnt have gone down such a dark and lonely path alone.
I’m Glad we are sharing our experiences, for it is understanding that matters, and love and compassion. Good luck to all. I am making slow and steady progress. Fairy steps! Xxx
Also I just want to add, four years ago when this started it is the second time in my life I have been struck down with this. I first had it when I was .18/19, so I could say I’ve had this illness for over 14 years on and off but its only stopped me in my tracks bedbound twice. I say only however the effects have been devastating both times. The first time was after having glandular fever where I never really recovered and so went in to develop ME. Then after a year of being back at my mums in complete rest, I eventually recovereda and went on to learn about the body thru massage and aromatherapy.
Then went on to do a degree and later become a dance teacher. (My second chance to fulfill the dream that the glandular fever put a stop to first time round). So I had 7 years free from it and enough to try for my dream again. Alas, the dance dream was scuppered again when I became I’ll after just 7 months of teaching. I had got a mortgage I couldn’t really afford and was setting up my dance business and doing massage. I had another job too. All in all about 4 jobs, no support around me, just self employed work work work! After pushing through the pain and deep achesin my thigh muscles, one day I couldn’t move. I hadn’t beleived that the illness setback called ME would ever return again and little was known about it then.
So here it was again. Alone and nothing doctors could do. I didn’t find out about fibromyalgia until I did lots of research and begged my doctor for more referrals. It seems to fit more to my symptoms this time round. A very odd thing.
Perhaps one day we will all become advisors to the medical profession with our extensive knowledge on this! Let’s hope so, that we can now help others by keep writing about it.
Just wanted to add this to give everyone a fuller picture. I think it helps to express and write about illness, a kind of therapy so thanks for the space and opportunity! Big love to all Xxx
Oh, also to back up what Jen has said, I had to take a good look at my ways of thinking and went on a very deep long emotional journey, esp with my family. I have learnt to say no and keep my best interests at heart instead of trying to please everyone and keep them all happy.
This is so important for all us conscientious caring types! Xx I found little compassion but git it from myself in the end, and that is good enough. Xx
Hi…I am Bev. I have chronic fibromyalgia…have tried the lyrica, only to find it makes me swell up big time. I had an accident at work in 2001, and shortly after that..was told by a specialist that I had chronic fibromyalia..of course all 18 trigger points. By the way, the Dr. I went to also had fibro, and has written several books on it!
They sent me to physical therapy…water therapy..and nothing worked..just added more pain!
In 2006..I was in the hospital, after not being able to move..they did a MRI..to find I had 2 herniated disc’s in my lower back. More pain..yah:(
Then in 2008…a lady ran a red light, and hit my side of our suv..now on top of the other chronic pain…I have more. After being taken to the hospital by ambulance..they did an MRI of my neck..to find out I have four herniated disc’s in my neck…again I went to physical therapy, and came home in tears after each session!! Then my fingers(pinky and ring) started becoming numb…more tests..to find out I have nuropathy in both arms…I drop things all the time, and its from the nuropathy!
SO I am on perocets, flexeril, valium, day pro…My Dr. has tried me on several different medicines, and nothing works! I watch what I eat very carefully…infact, I am down 50 lbs. thinking if I lost some weight…my legs wouldn;t hurt as much, and maybe help the pain…I was wrong…I walk with a cane, but usually can’t make it through a store, due to the pain! I am not as lucky as some of you on here! I can’t get down into a tub to soak..due to the herniated disc’s in my lower back, so it’s always showers for me..I use alot of ice, heating pads..but I am still in chronic pain 24/7…the perocets take the edge off, but thats it! I have also tried a couple different pain patches, with no relief!
Of course, my pain is not all caused by the fibro..but alot of it is..I am now on dissability, and not as lucky as some of you.(yes, I have tried going w/o any pills..only leaving me not able to move period! My Dr. said I will never work again.
I am glad alot of you have gotten relief, but nothing seems to be working for me! You name it, and I have probably tried it.
Good luck to everyone..I just thought I would share my story! Bev~
Ohhh,,,and my average night’s sleep is 3-4 hours…can’t lay for long…
Fibro love & hugs!~!
What are your thoughts about night shade vegetables? I was told things like eggplant,sweet potato,beets and a few others are not recommended for people with fibromyalgia.I need some answers myself, not sure I can do what you do, but I am sick of docs for sure. Thanks for your time, Kris