Fibromyalgia Community
My First Day Here...SO Lost!
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My First Day Here...SO Lost!

I have had Fibromyalgia for 22 years now. At age 38 I went from muscle spasms and lack of sleep to sudden muscle spasms and then terrible headaches, loss of balance, tremors, etc. I had to stop working in 1999. I am now in bed 95% of the time due to so much muscle pain if I try to walk. I have a lot of other issues now to go with fibro...but wondering if anyone else is having problems with their doctors suddenly want to take you off of the medication that is working for you? I am only on Clonazepam 1 mg and 10 mg Flexeril. I take OTC medication as I was trying to stay away from any other controlled medication. I know if I am taken off of the clonazepam I will not sleep. It helps me reach REM sleep and stops the tremors. I have tried all out there and this is only med that works!

Thanks, Tehyamom
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553995_tn?1332022440
Welcome to our forums! I have had Fibromyalgia for 15 years, diagnosed for 12.
Does your doctor give you a reason why he is changing your meds?
Eventually we all build up a tolerance to the meds ( muscle relaxers, sleep med, pain pills) . We often need higher amounts to have them work efficiently.
What I have worked out with my doctor is having other meds on hand to take to break the dependence cycle.
As you know our muscles vary in degree of pain. I take as needed Soma. If I have had the intolerable pain as you are experiencing, I add Vicodin. After a few days and if it is a severe headache instead of Vicodin I take Esgic to prevent the physical dependenc.
It is also found that these meds can have accumulated toxins and/or a change in the brain that changes the response to the meds.
I didn't look up where you live but if your doctor does not give you a reason for taking you off the meds that work, that satisfies you, go to someone else.
I have a slew of doctors working with me on my conditions. Remember they work for you!
Keep in touch and avoid acetaminophen ( Tylenol) it has negative effects on the liver.
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2090654_tn?1333684748
I am presently living in a small town in Florida. The only "real" doctor moved away. This doctor that "mentally abused" me is the only doctor working at this clinic that I have to go to (went to)!!! I was only going there because my husband had to retire early and we could not afford the COBRA that was offered. I can't get insurance on me otherwise due to pre-existing conditions. We are presently trying to sell our home and move to Tampa where our son lives! There are Fibromyalgia Clinics there. I hopefully wouldn't be treated so badly!

Anyway, my body reacts negatively to any type of anti-depressant and I can't take codiene type drugs anyway. My old doctor (he moved away) put me on Clonazepam as he tried me on so many other meds that had such bad side affects and I just would not take them. He finally tried me on Clonazepam saying it was a anti- seizure drug that is now used for FM. It works so well for helping me sleep...REM sleep. I never abused this med. I never took more than prescribed...actually took less than prescribed! I could have taken 2 pills a day of 2 mg. but I only took ONE at bedtime. I never wanted to be accused of what this doctor called me!

I really feel like he waited until the one OV that my husband was not with me and when he walked into the exam room and saw me alone he called me into his office. He said, "I am taking you off of Clonazepam because you are addicted!" My jaw must have dropped open! His tone was so mean! I just said, " Well, doctor how will I reach deep sleep?" You know my brain races all night unless I take this.Then he said, "You won't sleep!!" In such an uncaring way. I started to get emotional and he handed me a tissue and started to write out the one month supply. He said I needed to see a doctor in mental health!  I told him that I was not addicted...I was dependant. He said, "That's what they all say." I just walked out.

Anyway, I am cutting these in half and trying to skip days. I can't find a doctor within 50 miles. When I mention FM they say...well, we will have to get back to you...or, the doctor doesn't see Fibro patients! I mean I have other serious health issues too. I have serious bone degenerative issues that cause me so much pain and even and arachnoid cyst on my posterrior fossa. This causes bad headaches and sudden onset of vertigo. But, all they ee is fibromyalgia!
Sorry to go on and on...!
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2090654_tn?1333684748
I forgot to mention that my old doctor had just increased my doseage from 1 mg to 2 mg...so it won't be as hard to wean off...I hope!
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1530171_tn?1362547225
Hey Tehyamom.
Welcome to the forum.
It is unfortunate that us members have to meet under such negative circumstances, however, it is in times of suffering and need, that the
better aspects of our selves show up. Support, compassion, empathy.
I have no experience or knowledge in regards to doctors cutting off their patients from certain meds. They have their reasons, I guess.
It is true that it really is not easy being a doctor, with all the stress
and all the negativity that comes with the profession.
Personally, I think there are a lot of burnt-out doctors around, many of them addicted to substances to "cope" with their frantic careers.

Have you tried any natural remedies for FMS?
In one of my recent posts:"IWillDoThis" To help Alleviate Fibro Symptoms,
I suggested some natural and holistic things that you may want to check out, as possible substitutes.
Being a believer in the "impossible" -in a positive way lol!- I'm driven to the
solution in each circumstance in my life with the expectation of achieving it. This has truly helped me get out of some pretty dark holes in the past.

So, should you still have some of your fighting spirit in you-I hope you do!-
then consider opening up to the possibility that you DESERVE to
experience some  improvement, as your body HAS the ability to repair itself-to a degree- given some proper help of course. It is your God-given
sacred power- regardless of what your symptoms are, or what your doctors say!
Your bone degeneration along with many fibro symptoms is connected to the lack of adequate magnesium levels , the high acidic(low PH)
chemistry in your body and lack of activity.
If you wish to explore further all these ideas, please let me know.
There are many things you can do.
Hang in there, stay strong (in spirit) and focus on improvement
step by step!
Take care.
Niko



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Avatar_f_tn
Hi Tehyamom - just wanted to give you some support.  I'm so sorry you are having such a rough time.  I actually used to live in Tampa so you'll definitely have a lot of good doctors to choose from if you can get there.  I'm in south florida now.

I'm diagnosed fibro for 12 years but have had it much longer.  I'm 65 days off all pain/sleep/anxiety meds and just learning new ways to manage my pain. As Niko said, if you have an open mind and are willing to believe that you DO have the power to make yourself feel better then I invite you to view that information he gave me in the link referenced above on this forum.

I started the magnesium therapy and was surprised to learn how deficient a lot of us probably are - myself included.  My "fibro" symptoms mimic magnesium deficiency.  With a very inexpensive magnesium oil purchase you can start to supplement it via your skin.  You can keep in touch with me and I can let you know how its working for me.  Again, one of  many things I've begun to do and research - for me it was time to take charge of my health again.  

The more I laid in bed the sicker I became.  I'm learning ways to relax at night and get myself to sleep without meds for the first time in my adult life.

So I just wanted to ask you if there was a little spirit left inside you to try to manage this?

PM me any time for support and keep posting!  So glad you are here.
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Avatar_f_tn
Hello, I just found this website and i am praying it will help me with another problem that I am having.  But to try to give you some imput about Fibro, I have had this MONSTER since 1995. It took me many years to finally get a diagnosis and to find a good specialist who understands this MONSTER.. I have been seeing the same dr. for 4 years and used to have to take a drug test a few times a year. It slowly started increasing and now I have to take a drug test every single month. Also I recently got a call from his office telling me that I had to bring all of my meds to his office for a pill count. First one in 4 years.I do understand that this can happen because when you start seeing this dr. you have to sign a contract agreeing to these terms. The only thing that irritates me is the timeline, you have to do this for example: they call you at 9:00AM and you must be at the dr's office say by 3:00pm. It is hard when I have to go to my part time job and I had to leave early, my boss was not to happy but there wasn't anything that I could do. It is also the law, I do not abuse, give away, or sell my medications so I will always do what the dr. tells me to do. I think the problem that chronic pain patients are having is because of the drug abusers, and the ones who lie to get prescription meds. If the cops could do something about these idiots, the people who legitiminately need these  medications would have alot easier time getting them for our REAL PAIN! I hope and pray that one day there is a cure for Fibro, so I never have this pain or have to take these meds!   Good Luck with you're Dr. and the Fibro!       Deb
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Hi, I do not understand how the Magnisium helped so much that you do not have to take any presciption meds anymore. I have tried everything that I have been told to try and nothing keeps me from livcing in pain. Even with the strong meds that I take I stilllive in horrible pain. Is there a magnesium combination that maybe I have not tried before. I have Fibro so bad that I am now on Disability. Any help would be greatly appreciated!  Deb
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1530171_tn?1362547225
Hi deb398 and anyone one else reading this in a similar situation.

Please excuse my intrusion, but I will attempt to answer your question.

First we all need to understand that Fibro is  presented to us as a complex syndrome of various symptoms -not a disease-with "medically" unknown etiology and to make matters worse no "medical" cure.
Note the words :"medically" and "medical". It's significant.

The foundation laid by the medical authorities and governing medical bodies has established for the patients diagnosed with FMS or suspecting it, the aforementioned views and other guidelines of this syndrome, in respect to patient information and treatment protocol.

Now here's an interesting perspective. The use of quotation marks, done on purpose, has the connotation that this information exists ONLY within the strict "medical" interpretation, excluding alternative and holistic approaches. Which is the position of a few, including myself.

To bring this analysis to something more concrete, the medical/pharmaceutical establishment either:
1. does not have proven etiology nor a cure yet.
2. does not want to have a proven etiology nor a cure.

So, given the above, a Fibro dx is like a "medical" sentence.
The impact for most is devastating, leading to the most serious
side effect of chronic disease (syndrome): The loss of personal power to the disease, to the doctors and to the medications.
You see, conventional medicine ignores these serious aspects
of how sufferers are impacted mentally, emotionally and spiritually.

I personally feel deep empathy, for people who have been diagnosed with
serious conditions and are given no hope for improvement or cure.
Only symptom management through prescription drugs.

In my own life, I succeeded in beating my undiagnosed "mystery"
Fibro-like condition that doctors called: possible  psychosomatic, autoimmune, idiopathic etc.
My refusal to give up my personal power paid off, but not before making
"friends" with my excruciating pains and the suffering.
Immersing myself in studying health-not medicine- and holistic approaches in depth, applying it over time, resulted in a complete cure.
We are all different, and I don't expect anyone to do exactly what I did,
or anyone that takes magnesium to be sleeping like a baby every night.
Holistic suggestions have worked for most people with varying degrees
of success over time.
The synergistic effects of combining various approaches, hold
a greater potential toward effective treatment.
Example, for sleep improvement :  valerian tea in the evening followed
by a full body massage with magnesium oil-wait 30 minutes- and then shower or bathe and finish with listening to a meditation cd for sleeping well
or binaural beats for sleep induction, over time should bring considerable
improvement.

Approaching it this way for pain management, should make a difference to the point where you could start weaning yourself off some medications.
There are many remedies, nutritional approaches,exercises, breathing techniques etc.for this.
Let me know, if you need more information.

And the same for taking care of the third element of fibro: emotions.
A multi-faceted approach would work miracles over time.
Again there are many things that can be done!
And again let me know if interested in more details,
or simply read related posts in this forum.

Starting and staying in your own Fibro treatment  program, is  easier when your personal power is alive and  present!
When your strong spirit pulls you towards health and wellness,
there's a shift that takes place and you just Know when you're on the path of recovery. You feel reconnected to that power and you trust it.

Please, post here or pm me directly. I can try to address any concerns
or give you more details if you need.

" Honor your Worthiness to Receive" (courage, strength, love, joy, health)
  You deserve to experience divine abundance (in those),
  for You are a part of God!

Blessings to all!
Niko







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Avatar_f_tn
Hi Deb - I just want to reinforce what Niko said in his post above.  Don't mistake it wasn't "just" the magnesium that is helping me manage the fibro.  First of all I refuse to let this rule me and ruin my life - I have sat many a day feeling overwhelmed by this monster as you call it and when you think of it in those terms it can feel all encompassing.

I manage my symptoms as they appear and bother me.  I have been doing kundalini yoga (a very gentle form of yoga which is perfect for fibro) for about a year and a half and it has changed my life, breathing and spirit.

I meditate, stretch, eat better, take supplements to support insomnia, muscle spasms and other fibro symptoms.  When you are deficient in magnesium (google the symptoms) a lot of them can mimic fibro and if you are deficient oral supplementation is not enough - which is why I do the transdermal magnesium oil and baths - you soak it in by your skin.  You will sleep better at night, have reduced muscle spasms and have an overall better feeling of well-being.

I think so much of how we physically feel is affected by our mental attitude and if you feel beaten down and depressed from chronic pain I'll be the first to tell you that it is HARD to pull yourself out.  You might read the mind body prescription by Dr. John Sarno.

I also have a plethora of stuff in my tool kit to manage my symptoms - ice/hot packs of every size and shape, heating pad, TENS unit,  I use the backnobber II (purchased off amazon) to do trigger point therapy on myself at home, I do physical therapy excercises on my trouble area religiously every day, I use aromatherapy, I use Helichrysum Italicum oil on my neck when it is stiff and sore, I take lots of hot baths (with magnesium chloride oil), I take various supplements such as schizandra, eleuthera root, B vitamins, copper, 5HTP.  I'm using DMSO to manage pain.

So you see it isn't one magic thing, for me it is a journey with reconnecting to my body, mind, spirit and making a concious choice to regain control over my body and my symptoms.

I was in pain management just like you and was tired of the treadmill and the hopelessness I felt - even on meds I still had pain but also acquired an addiction to all that medicine.  Enough was enough for me and then to be treated like a criminal having your pills counted etc. - I just said NO MORE and I stopped, went through h e l l ish withdrawals and here I am.

It is the journey and what works for me may not work for you but I want to encourage you to at least begin the journey and seek out some alternatives for yourself.  If you had told me I'd be managing my symptoms opiate free even six months ago I would have laughed in your face but here I am.

PM if you have any questions!
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Avatar_n_tn
Hello, I am Gamalys and I have been having so many syntomps since 1998, actually after my second baby. I do not take any medicine because I think that if the doctors do not know what it causes fibro or can not give the diagnosis until they do not have any other option but fibro; because you do not "fall"  or "qualify" into any other; then you have fibro. Then I think they do not even know about the medicines. I have heard that a lot of them are addicted and I do not need another thing besides my fibro to deal with it. Besides I believe that God helps me to get throu every  day, he is actually the one that help me lives day by day and always having a new desire to keep living and fighting to live the best I can, to enjoy life eventhou is a little harder than others. Hey, God has given me a lot of good times too, much more than the bad times.
  If the magnesium works and it does not damage my body, please let me know how to do it.

Thank you!
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1530171_tn?1362547225
Hey Gamalys,
Welcome to the forum.
Just go back on this thread to April 5 and read my reply.
If you need more details let us know.
God Bless!
Niko
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Avatar_f_tn
Gama - I just pm'd you, check your messages.
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