How I am beating Fibromyalgia

reply to post by Plotus


Thank you for sharing that story! It sounds like your friend went through heck and it is great that he came out of it okay. It helps to have a good friend by your side

I completely understand what you are trying to say and don't take offense to it in any way. I know that FM is complex and different people experience different things with it. For me, I was very active when mine started. I was young, fresh out of college and had the world to conquer. I was doing traveling nursing and seeing the US one job at a time. I had several friends in the USAF from the base back in my hometown, so I always took assignments around where my friends were stationed and I was having a great time. I think the years of pain is what brought on rounds of depression for me. I personally always stayed away from pain killers, opting for the occasional tylenol when it got too bad. Maybe that is what kept me from spiraling so far down. I just kind of dealt with the pain and did things that made me happy.

By the time I went in to do something about the pain that was now unbearable, I had been having all the regular FM symptoms for nearly 10 years with no medical treatment for anything. No antidepressants, pain killers, nothing. I went to my doc, told him what was going on and his first question to me was "Have you been feeling blue lately?" I'm sorry but I really had to laugh at that one. At the time, I was the happiest I had been in my life, my body just hurt and I was exhausted from dealing with it day in and day out. I had been falling, breaking my leg once and twice spraining my ankle and dropping things continuously. I was starting to get the fibro fog and was forgetting things. Add to that the random loss of eyesight for about 20 minutes at a time when the migraines hit, it was the main reason I quit working as a nurse because I was afraid of being a danger to my patients. So yes, there are some mental aspects to it, the question is whether they are the cause or the effect of FM. The answer may be both, and different for each person. I enjoyed hearing from you!

~OkieDokie

reply to post by OkieDokie


I have been diagnosed with accute Sciatica.

Do you think that NUCCA could help? I'm thinking that it is worth a shot.

Everything I have read on it sounds good, but is there a possible downside?

Good luck on your recovery.

Originally posted by ANNED
first fibromyalgia is a number of disorders.

that is why its so hard to treat.

if you have fibro with any numbness in your hands or feet you need to be tested for small fiber neuropathy.
this means a skin biopsy. there are no lab test for SFN and its seldom done for DXing fibromyalgia.
traditional EMG/nerve conduction studies will also come back normal. normal.
www.healio.com... -fibromyalgia

In male patients with fibro another cause of fibromyalgia is sleep apnea.
www.ncbi.nlm.nih.gov...

fibromyalgia may also be caused by a number of autoimmune disorders.

I am one of the strange ones with fibromyalgia. i have Sarcoidosis a autoimmune disorder.
I have sleep apnea.
And i have small fiber neuropathy

Go to a chiropractor no way, It would be a waste of time and money because i know the causes for my fibro.
i take gabapentin and have a C-pap and my Sarcoidosis is in remission at this time.

Are you male?

reply to post by JustLu


Wow Lu, I felt like I was reading my own story while reading through your post. From the quitting work to the migraines and even the cough syrup. I thought I was the only one who did that I used to take nyquil on bad days, but the ingredient in it that was said to help the pain was the Dextromethorphan. I don't know why it helped, but it did. I also had a few times where I would get lost in the city where I had lived my whole life and on roads I had driven hundreds of times before. It really makes me feel better knowing that others have been there as well. You feel like you are losing your mind when these things happen. It's upsetting and scary.

Do you mind me asking if you know how yours started? Mine just gradually got worse over time which goes with the thinking that mine is from the heavy lifting involved with nursing. It is what makes the most sense to me after seeing and feeling the results I have had with this procedure.

~OkieDokie

reply to post by primalpainter


Good Night Nurse! Man have you been through it. I am sorry you are still suffering after overcoming so much in your life. I will U2U the info on my doc since I don't know the exact rules on that and I don't know how he would feel with his info posted on a conspiracy site. hehe Call me crazy. You can also follow the NUCCA link from the first page and search for a doc near you. There very well may be one closer to where you are.

For me, the fees were: Consultation - free, X-rays -$250, Each visit - $45. I am sure they vary by doc though and some insurances will cover it, you just have to check.

~OkieDokie

reply to post by TDawgRex


Hi TDawg! I did a quick search for Sciatica and Upper Cervical and came up with this Sciatica and Upper Cervial Care

I can't vouch for how much it may help since my experience is with FM, but I hope that can give you an idea about it. I do know that each time I go in, the way he measures me is by having me step up on a machine that measures my hip height on each side. He does the adjustment, and then remeasures me with the same thing and that tells him if I am in proper alignment.

~OkieDokie

reply to post by OkieDokie


Wow! Thanks. I am a believer that spine/nervous system care is one way to help to care of oneself. After a month of bedrest and PT, I am finally off most of my meds.

There is a part of me that is theorizing that sciatica is a more localized form of MF. Albiet, with a more noticeable signature observable by MRI or CAT scan. But it does deal with the nerves don't it?

If that would be the case, holy crap! my prayers go out to you. I don't think I could deal with it.

I'll let you know how it goes and keep ya posted. It may help others in my situation as well.

Once again...Thanks!

Originally posted by OkieDokie
reply to post by JustLu

 

Wow Lu, I felt like I was reading my own story while reading through your post. From the quitting work to the migraines and even the cough syrup. I thought I was the only one who did that

I used to take nyquil on bad days, but the ingredient in it that was said to help the pain was the Dextromethorphan. I don't know why it helped, but it did. I also had a few times where I would get lost in the city where I had lived my whole life and on roads I had driven hundreds of times before. It really makes me feel better knowing that others have been there as well. You feel like you are losing your mind when these things happen. It's upsetting and scary.

Do you mind me asking if you know how yours started? Mine just gradually got worse over time which goes with the thinking that mine is from the heavy lifting involved with nursing. It is what makes the most sense to me after seeing and feeling the results I have had with this procedure.

~OkieDokie

Actually the guifenesen was in pill form, supplied by a doc. For a time, they thought that if taken in high doses it would actually 'reverse' your fibro until it was completely gone. It was taken with a box full of vitamins and nutrients but if it worked for some, wonderful. Just didnt do that for me. I finally stopped and moved along to another dr when the pharmacist was positive my RX was a mistake. He strongly felt that taking so much was dangerous... I just know it didn't reverse anything for me and had little benefits for me.

As to when I got it... you know I've had dr's say it's heridatary and heard a slew of opinions on how it starts but honestly, I first noticed severe pain beginning about a year after a hard fall from a horse. At the time I had extensive testing done as I'd hit my head so hard my vision was doubled for almost 2 wks and had a concussion. I truly feel this is at the root and where everything began.

Mine started thru my arms, the headaches of course...but severe pain in my arms and wrists. They thought it was carpal tunnel until testing showed it wasn't. Then it began to spread over time.

I have to add tho that they say stress amplifies it and I was a sales mgr/finance mgr in a large auto dealership for 23 years at the time. Very stressful job most of the time, 56 hr work weeks plus longer when necessary. My doc use to say to me he wanted to follow me around and see how I did it with the fibro. He was amazed for a few years....and then I just couldnt do another day. I feel like I pushed it as long as I could and then my body said enough. ~Lu

You know it's a funny thing, my friend had gotten so dinged out on opiates and every other med he was taking, that one evening he just wacked out. They took him to Loma Linda ER and were trying to admit him. His wife was there along with his daughter, everybody frantic because he was at the point of talking alphabet soup. There was no meaningful conversation to be had with him. He was a gonners. The daughter called me, I was living about 12 miles away and made my way down to the ER as fast as I could and met the wife and daughter outside. He was strapped in a wheelchair in the lobby completely incoherent. The daughter filled me in as to what had transpired and we went into the lobby. Now him and I had grown up together and had been best friends for about 20 years or so, so I knew and shared every thought, joke and life experience with him, we could finish each others sentences, we were close, you get the picture.
I observed him from a few feet away while his wife and daughter and the MA's and such were trying to get any kind of intelligible response from him, and it appeared futile. After a moments thinking I told them to let me have at it, and they agreed. So I got in front of him, not sure he could see me or not, and calmly said to him "we don't need no stinking............ and I left off the 'Badges' part, (from an old Bogart movie) Immediately he responded with 'Badges' to finish the sentence. At that point he became lucid and sort of snapped out of his completely distant world and looked at me. After a few minutes he became aware, and over about the next couple hours he came out of his fog/stupor. I remained there well into the morning hours, and about sunrise they released him to his wife and I went home. I offered to stay with him, but his wife figured she could cope and handle it from that point on.

It's funny how that one phrase, something familiar, could bring him back, but that was the only thing I could think of that I thought could unify our spirits, and I could guide him back to reality.
FM is certainly a complex ailment, and even up until 04-05 was not well understood, but I believe inroads are being made as of late, and it being addressed as a 'Real' ailment/disease. Just thought I'd share that bit with you.

reply to post by TDawgRex


That's great news that you are getting better! It's quite an achievement when you can finally cut out some of your meds and still feel good without them.

In fibro, a lot of my symptoms were neurological, as well as most others who have it. The thinking with this procedure is that the pressure put on the spinal cord is what causes the neurological symptoms. The pressure is caused by a twist in your cervical spine which in turn narrows the opening for your spinal cord and arteries passing through. That's the basic idea.

I hope this does help you and let us know.

~OkieDokie

Best research I have found and that worked for me (CFS) is:
Dr Sarah Myhill on Fibromyalgia

Highly recommended reading.
Not saying that chiropractic help will not contribute to healing, it surely will make the entire system work better.

reply to post by JustLu


I had tried the guaifenesin before as well with little to no results. I think the Dextro works on basically the same idea as Lyrica with blocking pain signals. I would take it in the evenings sometimes when I didn't want to take more Lyrica and it at least helped me relax and fall asleep.

Sounds like your Fibro has everything to do with that fall. This is making more and more sense to me with each person's story. Thank you so much for sharing yours.

My brother is a sales manager and I see the stress he is constantly under, I have no doubt about what kind of stress you went through with your job alone. It's not a job for people who don't want to work hard and long hours that's for sure. I found that stress made mine worse as well, be it physical or emotional.

~OkieDokie

To the OP, maybe you should post your results on the holistic forums as well. like the one you mentioned?

reply to post by Plotus


What a cool story. Terrible that he went through it, but so neat that he was able to be brought out of it by something familiar that you both shared.

~OkieDokie

reply to post by SacredLore


Um, I am either a complete idiot, or I just had an amazing epiphany reading that. Are there any doctors on ATS? Don't know if what I am thinking is even possible, I would like to run it by someone with a lot more schooling than me. Anyone?

And SacredLore, thanks for sharing that. It may have just made a lot things with with FM make sense.

~OkieDokie

Mods please delete. double post. Thanks[

18 years of "fibromyalgia" getting shunted from pillar to post with no-one knowing what it was what to do or how to treat it. I even had those consultants who didn't believe fibromyalgia existed and I was told it was psychosomatic, menopause, ballet from when I was a child you name it!! Got so bad I was on crutches for 2 years and was told I'd probably end up in a wheelchair.

My own theory was pain is there for a reason, just needed to find the reason. I kept telling doctors and specialists I felt "off balance" as though my skeleton was kinda out of line

Three weeks of osteopathy and I am walking again properly for the 1st time, damn near pain free and sleeping for a full night.

The cause of all my years of pain? SIJD sacro iliac joint dysfunction. My hip was slanted down and to the rear causing the femur to rub directly on the thigh muscle for years. The hip being out of line caused back ache shoulder ache, problems walking tendonitis in the feet, severe muscular problems and strain on the opposite leg. Even the migraines I had were caused by the skeletal problems

As I had kept saying to everyone, I was out of alignment but nobody listened. I was in tears when I had an actual diagnosis and after 3 weeks couldn't believe I had been forced to suffer for so long when there was no need to.I now see the osteopath once a month but of course being in the UK I have to pay privately as the NHS wouldn't cover the cost and my gp wouldn't recommend me as he didn't believe there was such a thing as SIJD as well as fibromyalgia!

I'm now a different woman!! Just angry it took so long

reply to post by OkieDokie


I suffered for almost 15 years and lost my trust in US medical system. I am 68 just to give you some perspective. In my early 24 years life I went twice to Doctor. Lived on herbs in that period not to say that our Hospitals were free. My first visit to Dentist was at age 31 and that was on my wife insistence. I am not a doctor or a Scientist but was an engineer and worked in Research. Combined early life experience with work experience Since 2005 I reversed my many medical problems and I can tell you that there is no dedication. The knowledge is fragmented I am thankful to many who wrote their observation and experiences on sights like this. Here is my 2 cents. Early December 2012 Dr. Phil (TV show) had a guest Doctor who looked like an East Indian with white long beard. He learned some of his early medical science in India before he came back and got his Medical Education in USA. I wish I could give you more of his information. If you could find that Doctor. He has full medical Education, Nutrition, Chiropractor, Alternative medicine. He spent many years. your couple visits to him will make you a new person. I can give you a long lecture what to eat or not to eat but all of that will be useless. When you find the information please post it here so others can benefit from your experience.

reply to post by loueber


Thanks for the suggestion! It hadn't even crossed my mind, I had just chosen ATS because first, I love this site, and second, because I know a lot of people visit here.

~OkieDokie

reply to post by phyllida


I completely understand your anger and frustration. I am at that point right now and that is what lead me to write this thread. But along with those feelings comes joy from finally knowing what it is and how to fix it. It is hard when tests keep coming up a-okay, but you know there is something terribly wrong with your body. I am so glad you figured it out and were persistent!

~OkieDokie