Is there Life with Fibromyalgia?
1993 was the year I learned what it means to have an autoimmune disorder. Like so many fibromyalgia sufferers, I could not figure out why it hurt everywhere. Your joints ache. Your muscles feel like they are on fire. People think you are just trying to get attention. You must be lazy and so on.
The Beginning
Little did I realize this was just the beginning of a very long path that still doesn't have any end. After seeing several specialist and hearing everything from 'You need to take better care of your self to my personal favorite, " come back when you get your ducks in a row!" I felt totally defeated. Did no one else have this? How can they give something a name and not know how to treat it?
Pills
The only answer was to take more and more pills. I think I had tried every anti-inflamatory out there. Still, not much relief. I was tired, angry and just wanted the aching to stop. But it doesn't.
Countless exercise classes, water aerobics, relaxation techniques and still no real relief. One doctor said if I would just lose fifty pounds, my problem would be gone! Tried that too. Didn't help a lot either. Oh well...
Brain Fog
Working for state agencies required learning rules and regulations. You need to know several programs, how to administer them and keep accurate accounts. Hours were spent reading and studying only to have your brain check out. Supervisors and coworkers do not understand what your problem is. Pretending that nothing is wrong just isn't cutting it anymore. Depression sets in. You cannot function. You lose your job.
Anger
I wanted answers. I was upset with myself, my kids and my husband. How could they go on through their day not seeing or understanding what I was going through? Did they really not care? I would lay in bed and cry myself to sleep only to wake up in the middle of the night. Sleep took on a whole new meaning. To this day, I still have issues with it.
The light came on
About a month ago I came across an ad for CBD oil. Just as luck would have it, I watched an interview on Dateline about the use and benefits of the oil. That's when the lights came on.
What if this really does do what they claim? How much will it cost me? Plus a million other questions including if it is legal. (It is where I live in Montana) Now I am not promoting everyone try it, but you may want to take a gander at the reviews about using it.
Cost vs. Prescriptions
At my last doctor visit, she told me the only options left for my pain was to try a drug called LYRICA. I am sure you have seen the ads on TV. The manufacture list over 70 side effects! Plus my out of pocket expense would be around$400.00 a month!
Hello CBD Oil. The average cost is $39.99 approx. Depending on how much you use. But the maximum I would spend would be around $65.
It doesn't take a lot of brain power to sum this one up.
One Week
I did a lot of research on the different types, companies, and delivery options. May 23rd was my start date. I tried my first dropper of oil that morning. Now here I am ten days later. The changes are slight but I am noticing a difference. I believe it is starting to work. I am going to test it for six weeks.
Like I said before, it may not be for everyone. Not every person gets the same results. Some do not get any, but with no reported side effects, it is hard to turn down. Oh, I spent $39.99 for the first bottle. I take it twice a day. It is still along way from empty.
PS...
I also suffer from Rheumatoid Arthritis. The aching in my joints has calmed down some since starting the oil.
If you have any questions, please email me or PM me.
Hugs to you all.
Recent Comments
37
Hi Marge,
Thanks for sharing. I too use CBD oil but for degenerative hips and sore knees. Makes a huge difference especially for sleeping. If you get a moment hop over to my website (posted below my profile) as I talk about CBD quite a bit. Haven't covered the topic yet on Fibromyalgia.
Good to hear that the CBD has been able to help you!
Mary Ann
Hi, Marge. I have had fibro since I had mono in 1984. Of course, they didn't call it that or know what was wrong with me then. My favorite was "it's all in your head. You need a psychiatrist".
Have you ever tried physical therapy for your pain? I was having daily debilitating headaches from muscle spasms in my neck. I had a technique called "dry needle technique" in which they insert a tiny needle similar to an accupuncture needle into the muscle spasm, and it releases the spasm. I actually had about 6 months without a daily headache! That's unheard of for me. I need to go back for a tune up, though, because I spent most of last week in bed with intractable headaches again.
I tried Lyrica several years ago. My doctor was giving me samples because it was so expensive. I did respond to it and was more functional. However, when the samples ran out and I couldn't afford it any more, I got worse again.
When my doc attempted to start me back on it a couple years later, I couldn't tolerate it any more. I had an "out of body experience" that I don't care to repeat. I was floating on the ceiling looking down at my body on the bed. Not a fun experience! So, Lyrica is not in the cards for me any more.
To answer your question "is there life with fibro"? I would have to answer sometimes yes, sometimes no. I never know from day to day if I will be able to get out of bed. It's difficult to make any plans, and some of my friends just don't understand why i am so unpredictable.
I have thought of trying CBD oil. Do you put the dropperful in a glass of water, or just squirt it on your tongue?
I spent most of the day at Urgent Care, taken to ER by ambulance from there due to chest pains today. My tests were all normal, but I was referred to a cardiologist just to be safe. In retrospect, I'm thinking it was probably fibro pain, but it was a different pain than I've had before, and I'm VERY well acquainted with that!
Hope it helps to know that you're not alone. I have several WA friends who have it, and we commiserate with each other. Should I say "welcome to the club?" Feel free to PM me if you need support.
Hope we both have a better day tomorrow!
Carol
Glad to connect with you. Yes I also do the dry needling. I truly believe in it! My PT is awesome. I went 7 months in between treatments. I too had a trip to the er a few years ago. Thinking it was heart related but turned out to be Fibromyalgia. The spasms actually caused a irregular heart beat. But it wasn’t permanent.
I take the oil under my tongue. I hold it there for 20 seconds then swallow. It really doesn’t have much taste.
Yes there is life with fibromyalgia. That’s why it’s important for you and me to encourage others. Thanks for sharing. I will keep you in my prayers.
Hugs
Marge
Yes the CBD oil does work, I live in Australia and at the moment there is a big debate about legalizing the oil, unfortunately big pharma wants to get involved and that is causing so much angst.
It is a natural plant it is not manufactured ..so the idea that they can ban something like that and it is shown to work for people is stupid, but that is the world we live in at the moment,. I think the US is a bit more enlightened, didn't I hear Mr Trump is going to legalize it in all the 50 states??.. You are on the right path with the CBD oil..good luck
Thanks. Yes it is legal where I live in Montana. It doesn’t have the htc so you don’t need a medical card to get it.
Sorry to hear about your pain. My mother has osteoporosis. I hope the CBD oil will continue to work. All the best.
Eden
Hi Eden. Thanks for the reply. I am thinking that this oil is starting to work on joints. I have osteo also! It all runs in my family.
I'm so sorry to hear about your pain. I hope you find relief.
Please keep us posted.
All the best,
Wendi
I, too, suffer with Fibromyalgia. I have had it for over 30 years but was only diagnosed about 10 years ago. I broke down and cried when the Doctor asked me, "Has anyone told you that you have Fibromyalgia?". That's when my journey began. It has taken all this time to be able to find solutions that help manage the pain and chronic fatigue that accompanies it.
I am unable to take anti inflammatories due to a kidney condition that resulted from taking too many OTC meds to manage pain prior to my diagnosis. I now take Lyrica daily and have found much relief with it. I know because my level of pain and brain fog escalate dramatically if I have to go off it for a few days.
I am fortunate to have medical insurance that covers my prescriptions and my doctor's visits. I have tried CBD oil also. I got minimal relief, but I only took it for a couple of weeks. I believe I needed to have it in my system for longer than my sample lasted. It isn't covered by insurance and I can't afford the out of pocket expense, unfortunately.
It has taken years to find a working solution to my pain. It is not perfect, but it helps. I have an Internist as my Primary Care Physician. She is very knowledgeable about my conditions. I usually see my Rheumatologist and Nephrologist (kidney specialist) also, as well as a pain specialist. My life is filled with pain, fatigue and doctors.
I understand you.
Candice
Hi Candice; I don't think the pain will ever totally go away. Like you I have learned to live with it. I am thankful that my RA doc. is very open to letting me try this. She also had me do dry needling. That is totally amazing. It is done by a Physical Therapist. I get two to three treatments a year as they last that long. It is kind of like acupuncture. Check it out. It may help and my insurance covers it.
Hi, Candice. Your story sounds so similar to mine. My rheumatologist was the one who finally diagnosed mine. I was diagnosed with Chronic Fatigue Syndrome before that.
Carol
I was diagnosed with CFS a year or so after. On top of the fibro pain I also have osteoarthritis. My hips, knees, hands and back are primarily affected. It all changed my world. Now I only see specialists.
I know what you mean. I added another one yesterday when I was referred to a cardiologist by the ER. Having a sleep study in August as well. Ain't life with fibro grand??! That's the reality, but there IS life after fibro, just with lots of modifications. None of us are the person we used to be! Carol
1
Yes, it really helps. Ask your primary care physician for a referral for physical therapy for dry needling. Not sure if the referral has to be that specific, but I know that PTs do other treatments for fibro as well, so you want it specific to dry needling unless you want to try both at once, which would be awesome!
I've come in contact with a few other WA members who are in our "fibro club". It is a club that I don't want to invite others to join, as I know what they are going through to quality. We are not alone and that is good, actually a relief of sorts.
We have so many around us that really don't understand us and the way we have to live. It is good that we have others to talk to sometimes who truly understand. Marge is a new member of our "WA Fibro Club". I say, 'Welcome, with empathy".
Blessings
Candice
Yes, our stories are very similar. I have been seeing a Cardiologist and a Pulmonologist since 2004. I did have a cardiac episode, called a Heart Spasm. My heart just cramped up and stopped for a few minutes. Sound familiar? Spasm? Yep, I think it's related to the Fibro. Thankfully there was no permanent damage to my heart.
My answer, YES, there is life with Fibro. It is just a different sort of life. I know of those who choose to give in and wallow in their pain every day, constantly in bed. Those have chose to simply exist.
I choose to LIVE. You and Marge have also. That is why we are in WA. We may be limited by fibro in some way every day, however, we choose to push through it and go until we can't go anymore. I know my limits, as I am sure you both know yours. But, we can live productive lives and deal with fibro at the same time.
I really wish wonderful things to happen in your businesses.
Take care of yourselves.
Candice
Dashnow (Darleen) and Armlelmnt (Anita) are 2 others who could join if they wanted to. Haven't seen them respond to Marge's post, though, so maybe they haven't seen it yet.
So sorry to hear about your chronic pains.
Glad that you found CBD oil ( I haven't tried it myself ) and giving you some hope.
Googled "fibromyalgia " and the symptoms that you described including sleep problems are so typical.
This could be a good niche for your website if you haven't started one about fibromyalgia. With your personal experiences, your posts would be very enlightening.
Hope you feel better each day.
Marita
Thanks. I have been thinking about just that also. I have a site started for Fibro but have been concentrating on just getting this one up. I am really torn between the two. lol
If you do decide to do a site on fibro, several of us could give you guest posts of our experiences with it.
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Very interesting testimony...another validation for me that we have to be our own doctors. Glad you found some relief.
Debbie
Thanks Debbie for reading the article.