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Why do I feel like I am talking about being abducted by aliens?
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An_249675 posted:
I have an open mind. Anything is possible, right? It baffles me however, that are so MANY people here and all over the world who have fibromyalgia and some still think it is "made up"!!!
Take my pain and fatigue and anxiety and insomnia and depression for just one day and tell me how to deal with it for the rest of my life. Tell me how to face each day with the same symptoms and not be able to find any relief. I don't take any drugs because everything makes me very sick. A lot of foods increase my pain including many fruits and vegetables which I would eat all the time and are supposed to be healthy but I have to avoid because they cause inflammation.
Tell me how to overcome my fear for the future and explain how, in a few short years, I have lost myself and the person I once was, still very youthful and full of life at 50 with a wonderful job in healthcare and lots of money to spend. Tell my daughter why I am so angry and tired and lying in bed because the pain is so bad and I am in tears.
Tell me what to do and where to go and hear my cry for help because no one listens anymore.
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katmandulou responded:
Hi An_249675, and Welcome!

This is a club nobody wants to belong to, but I assure you you're in the right place. What works for me might not work for you, and every day is a challenge. I wish I had the answers to each of your questions, but I don't, and I believe that nobody does.

Just this morning, my DH said that he's amazed at what I accomplish every day, knowing how much pain I'm in by the look on my face. And he rarely believes me when he asks and I say I'm not in pain at all. My mother has Alzheimer's and is in a nursing home. Dad had a fall almost two months ago, and might never go back home to live. I own a small business and have clients all over New England. DH said he doesn't know where I get the strength. (It's not from coffee, I assure you!)


There are some good resources in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to people what it's like to be in your body.


Have your doc check you for Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


Stick around, there are a lot of us who will chime in with help. Register so we know who you are. And have the best day you can possibly have,
Lou
 
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bette_kaffitz responded:
An,

Back when we were in H.S., my best friend never told me she had MS. Why? Too many people didn't believe in it--including doctors. Flash forward to today and the MS is clearly visible on MRIs. Fibro isn't.

But fibro is visible on fMRIs (functional MRI is a real-time tool that does show what happens when we feel pain or when we experience fibrofog) Unfortunately, fMRI is very expensive and is therefore not available everywhere.

Normal blood tests do not show fibro, but there are several REAL markers in our spinal fluid. Of course, none of us would enjoy having a spinal tap to get that fluid.

So, until there is a routine test, there will still be those who don't believe in fibromyalgia.

This site is where to go. We are the people to moan and groan to. And maybe, just maybe, we can help each other.

Bette
 
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dollbug responded:
Hello and welcome...sorry that you are dealing with so much right now. I think we all now just how you feel. MiMi in NC. No one really understands us FMers but those of us who face the wrath of the dragon, aka FM, each and every day. I am sure that there are *tools* which will help you cope better...but it does take time and effort to find them.

I would encourage you to start yourself a journal...just to *track* what you do and how you feel...this just might help you decide what foods you need to avoid and what activities bother you the most and then perhaps you can adjust your life to reflect things which increase the pain that you have.

Do you take any vitamins and supplements? Has your doctor checked your Vitamin D level? This is really important to a lot of people these days. Do you know that low Vitamin D can cause some people to have *additional pain*? Well, I know it sure did make a difference in my life. I had no idea just how important Vitamin D was...until a surgeon told me that he thought most of my pain was from my level being almost *non existence*...it was 12 or 14...(at the time I had multiple health issues, so it was NOT just the low vitamin D...but it sure attributed to my pain). Actually I think a lot of us are in such a *mess* when we go to the doctors that they do NOT have a clue what to do for us or with us. I know that each medical issue that I had was addressed before I begin to *feel better*.

My doctor was treating me for *depression*...and I am still not even sure that I was depressed. It took me a very long time to find what works for me...but I did it. I am one of the people here who does NOT take medicines either...but I do take vitamins and supplements and do other things as well.

A heating pad can do wonders for your pain...or it sure does help me. Taking a hot shower at night using lavender bath salts in a stopped up drain can help my body to relax so that I can sleep better. Sleep is so very important to us FMers. Eating right and drinking lots of water also helped me. Water is 98% of what I drink every day. I do have a small can of pineapple juice (which Dr. Oz says is good for people)

I take the following vitamins and supplements: a good multi, Fibro Response and Magnesium Malate (found at vitamin store) Omegas, P5P (found at vitamin store also)...B 12 and B 1 (I am still in the early stages of trying the B 1) These are the ones which I feel *control my FM pain.

I also have chronic fatigue and have NOT found anything yet which I feel has helped me...(this is where the B 1 comes in) I am hoping that it will help my energy level...too early though yet to know.

I hope you will check out the info here under *tips* and *resources* and be sure and review the *member toolbox* as well...I am sure you will find other *tools* that perhaps you might want to try.

Hang in here with us...we have a good group of people here who understand exactly how you feel. We do listen.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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booch007 responded:
Good morning,

Oh I hear everything you said...we all have given up so much to make it through this. For me, I have settled the anger and depression of fighting him* (the dragon)

I have learned not to fight him now and to dance with him. My meds are better and with my mindset improved I am in a better place. It has taken over 10 yrs to change my mindset!

One thing I bought that helped so much was a book called FM and Chronic Myfascial Pain , a survival manual; by Dr Devin Starlanyl. It was so helpful to know what was causing some of the crazy symptoms I had. That is where you just say ??? WTH???? and it was good to have a place to go and figure out what to do about it.

I am sorry that you are early in the tune up state. It can take years to attain better. Being consistant to watch self for what are YOUR triggers and things that exacerbate your pain is paramount.

I have changed just about everything in my life including my dishes and washing machine. I found carrying the plates to the table was a trigger so I bought Corelle which don't break if the hands are numb or weak....an answer to a problem. Pulling the wet clothes was also big...so I have a front loader (big help)

Being the Proactive leader in your therapy is B I G. what do they say....P R I C E L E S S!!

Get educated, for me getting hydrated was a must. I had no idea how dehydrated I made my body over time. No soda, no junk...Just clean water now is what I give the body and plenty of it. In the end even my skin got better! But I work at this everyday.

It is OUR job now to tend to our bodies (we only get one) get educated, practice good care and journal all your learn for your future. B I G that you found us. So much here to take. Open 24/7 also...free also...good stuff! Look to the right in the resources for the MEMBERS TOOLBOX. It is pages long, but it has so many pearls of wisdom shared by all the patients that have come through here. another...P R I C E L E S S.....

Good luck and we are with you through all of this....

Nancy B .


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