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Living Well with Fibromyalgia
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BethR55 posted:
Greetings!

I have learned patience and a positive attitude is key to my pain management. I developed Fibromyalgia after a hysterectomy in 2000. I entered a strange world during those days and weeks post surgery. I do believe the surgery was the trigger. I also believe there is a genetic component to my disease. My mother and sister both had/have the disorder. My mother is no longer on earth, but I remember her suffering and difficulty walking and performing daily activities.

I manage my disease in silence because I have found a persistent lack of understanding from physicians over the years. I have pain flares and periods of intense pain throughout the year. How do I cope? I cope with the firm knowledge that I matter. The world is a better place because I am in it. I use positive self talk and look at the world and daily living with a positive viewpoint. But I do not share my diagnosis within my work environment. It is dangerous. The world inside my thoughts is where I live during those hours at work. And such a place is a paradise of positive thoughts, memories of joyful life experiences, family, and friends. I use humor and kindness bestowed upon others. I am a therapist. The mere act of sharing a new concept with a client gives my joy. Joy reduces my pain and leads to self satisfaction. It pleases me.

As far as getting up out of my chair at work. Well, that is another matter entirely. I find rising slowly works. I find appreciating the complexity of the human body helps. And I find joy in the knowledge that I am alive. Do I hate pain and the limitations it brings? You betcha! But I revel in the knowledge that I am alive. No one condition or person can take that knowledge and joy away from me. I may not be physically fit anymore or thin like I used to be, but I am a lovely person with hopes and dreams just like my non-fibro fellows.

As far as physicians go, patience is the key. I remember the adage "slow and steady wins the race." At this point I know more about pain management than the general practitioners. I stick with the one physician who understands me; that is, an internist/gastrolenterologist in a city 4 hours away from my residence. Why? Because he trusts and understands my opinions and ideas. He gives me the medication I need to live comfortably (that is, with manageable pain versus complex, intense pain). He talks to me on the telephone in a collegial manner and respects my opinion. He helps me without judgment. So do I drive 4 hours? Yes. Why spoil respect and understanding?

I am saddened sometimes with the care I receive in the town in which I reside. I wish MDs would practice nonjudgment. I am not a pill junkie. I am a woman in pain. If I had my druthers, I would be pill free. However, that is not an option.

So live well and laugh often. Find joy in living. Focus on laughter and the interpersonal gifts you bring to others in the lovely world you create for yourself. Respect yourself. Trust yourself. Honor yourself. Walk gently with your head held high, your shoulders back, and with the personal pride and joy that you matter in this world. You know your fibromyalgic condition better than anyone else. Respect yourself. Love yourself. Do what you can physically and trust in the One that created you. Release the pain to your Creator and ask for peace that comes in the knowing that you matter. Find a physician that is accepting and prescribes without judgment. Leave the office of those individuals who are pejorative and arrogant. They DON'T know best. Seek knowledge. Read. Become your own expert.

Be well. And thank you for listening and respecting my opinion. It is mine and mine alone. But I matter. So do you dear friend!
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Mark Pellegrino, MD responded:
Here's your post, Beth! It must have taken a scenic longer route before getting displayed here!

It is a great post..thanks for sharing your wise words!!!

Dr. P
 
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annamaria04 responded:
That's a wonderful post Beth! I've come back to read it twice now and just wanted to let you know it's very inspirational. I agree that patience and a positive attitude are my best coping methods and they work very well for me. But I can't seem to carry that positive attitude over when I'm having a flare. When my pain level goes above my normal 5/6 for more than a couple days, I start to lose it. After three years of this condition, I am still a work in progress and with each flare I learn something new about myself.
 
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leigh44647 replied to Mark Pellegrino, MD's response:
Dr Pellegrino is there a link between firbromyalgia and a shortage of magnesium?
 
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laurep responded:
Thank you Beth, for so eloquently expressing exactly how I feel/hope to feel most days. But most especially, on addressing how important and deeply valuable the relationship between ourself and a truly trusted physician is. It's invaluable! And though many may question it, i.e. "Why are you on so many meds?", "This rx xxx is the newest on the market, how come your Dr. hasn't put you on it?", "I can't see any improvements in your "condition" with or without medication", and whether their intentions are sincere or not, it's not their call - unless there is obviously some abuse/mis-use occuring. Having your Dr. really listen to you and respect you and believe in you is very powerful. FMS is not a one-size-fits-all. Drug therapies need to be tailored and monitored and tracked carefully. And even then, in 6 months you might have to start all over again as intolerances, allergies, sensitivities, etc., pop up.

Again, thank you for putting into such positive words something I feel so grateful for. And I leave you with my personal hope to strive harder to reach the place you're at. I truly admire the peace, courage and strength you've attained/drawn from.
 
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pjrnx44 responded:
I just found your post today. I am new to this site. I was diagnosed with fibromyalgia in 2000 but I suffered with it for at least 5 years before diagnosis.
I too found it difficult to find a physician who understands and does not give you looks and turn their head away from you while you are talking. I finally found a physician in my town. He is a family practitioner and takes very good care of me.
I found your post supportive and giving me a little peace. That is hard to come by in my world. No one understands how I feel most of the time so they avoid me. Even my family.
What gives me peace is to accept that I have severe limitations to my life and can no longer go "gun ho" as I did before fibromyalgia.
Be well. Know that I am thinking of you.
 
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TheLordIsPowerfull responded:
I respect and understand what your saying yes we have to keep moving forward and stop with the what if. That's what I do I say it is what it is and keep going. I have two kids of my own and I have to . What scares me the most is that people keep telling me that by the time I hit 40 or before I will be in a wheel chair or I am going to be all druged out etc, that's my only down fall overall all of that I cope with it and deal with it. I am not a big fan of meds but yes if you have to them you take them.

I am a strong beliver in god and I belive I well be ok. I get scared travling cause at times I get dizzie for no reason and my anxiety has gotton so bad again I feel it's because what people say and how I take it in. I have lot's of steps in my home and know we are planing to move cause my legs are feeling heavy and I feel weak. The Dr. said it might be good for me cause it will keep me a shape but wrong it work the other way on me it made me worse. I feel bad cause my kids love it here but I am in more pain then I was a four months ago cause that's when I moved in cause I was homeless for almost three months and hade no choice but to take this place. Dr. P I am very scared that the fibro is going to take over me no one on my mothers side has it I don't know anyone on my fathers side but what I hear from my family just my fathers mothers has bone promblums but that's it and my uncle is dying from lekumonia something like that.

Is there any Vitaminin I can take to help it more or any other advice thank you. Oh sorry my name is Maria


I have a question you say you saw your mom suffer from difficulty walking and performing daily activities was that from the fibro I am not trying to be in your buiness but that's my down fall I really don't know how to use this website if you don't mind emailing me at ThePrFamily @comast.net that would be great thank you. God bless
 
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Caprice_WebMD_Staff replied to TheLordIsPowerfull's response:
Hi Maria and welcome to WebMD,

You've responded on a discussion that is now four months old and I'm not sure anyone who can answer will see your post.

I encourage you to start a new discussion on the board to introduce yourself and ask any questions. To do this, hold your cursor over the orange Post Now button on the upper right and choose 'Discussion' from the drop-down menu which appears. Fill in the subject line and the body of the message (you can ignore the poll part of things) and Submit.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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JOY9756 responded:
Hi BethR55,

I too try to follow the positive thinking aspect. The other things that help me with my pain are being with my two young grandsons. They bring me such joy and laughter that it makes life easier to deal with in regards to the pain. I truly believe that their energy and stamina helps me through my pain and fatigue. I'm going to start a food journal to see which foods do exasperate my symptoms. I'm also so glad that the weather will be getting warmer soon. Thanks for your input and information.
 
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ajsldy responded:
Thank you so much for your post. I think my hysterectomy brought on my fibromyalgia as well, although I did start having significan issues about a year or two prior. Chronic tendonitis in both elbows that lasted nearly 5 years. I prayed a lot and that helps. My whole upper body is a problem, and then some stuff off an on with hip and knee and feet, sometimes feels like sciatica. I tried all sorts of things, accupuncture, deep tissue massage, pills, etc...I have an infrared sauna and a hot tub, which are both extremely soothing for my muscles. I reccomend and the sauna was only $1,200 bucks and I was able to get a prescription from my dr. so I could use my flexible spending funds, and save taxes. Anyway, Nothing has made a difference, I am pretty functional, but it's a bummer...also, I gained 30 lbs after my hysterectomy, which has been totally depressing. I forgot to mention earlier, that I think a lot of my upper body pain has to do with being a dental hygienist, full time, for 30 years. They say extreme stress, physical or emotional can trigger fibro, I figure those areas are probably fibro and physical job stress from terrible postures and repetitive stress injuries. My hands feel swollen and stiff. Anyway..looking forward to being in this group and learning and helping each other. Thanks, this is my first visit.
 
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ajsldy replied to Mark Pellegrino, MD's response:
thank you for your time and knowledge to help us. much appreciation. Newbie here.
 
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tracyblu responded:
Thank you so much for sharing this. I couldn't have read this at a better time!! Again, thank you.

Tracy
 
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lilymain responded:
thanks for the encouragement i have been down lately because i cant give to my family and friends all that i could give until i was diagnosed with fibro yes i cant give them all the fine dinners i used to give them but i can cook a meal and take to my daughters i cant do all the holidays like i used to but i still can do my family traditions i have instilled in them
so i guess i can give a lot because i am still myself a verfy caring loving mother and grandmother i cant take walks with them as i once did but i can sit and listen to their concerns and still give good advice for whic i am thankful i guess i have been dwelling on what i cant do rather than what i can give to the ones i love thanks for changing my thinking

the pain is unreal i suffer greatly but i try to go on each and every day in the knowledge that life matters pain or not i will nto let this fibro manage me but i will manage it thanks for the encouragement blessings lilymain
 
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OneWriter responded:
Yes, excellent.

I have found that to focus on who I have always been, the person outside of the syndrome, is what allows me to remember that my life is not defined by the aches I constantly feel.

Brilliant.
 
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Caprice_WebMD_Staff replied to OneWriter's response:
Hi OneWriter,

Great post.

I just wanted to welcome you here. I hope you'll keep reading and talking in this community.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell


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Living Well with Fibromyalgia
Greetings! I have learned patience and a positive attitude is key to my pain management. I developed Fibromyalgia after a hysterectomy in ... More
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