Amen

Fibro….it does not kill you but does not let you live too…I m 38 and have fibro for more than 10 years! I look healthy and young for many and many including my family members thought I was depressed and I think a lot as hoards of doctors over the years could not find anything. Nobody could understand my pain both emotional and physical and always get the comments ” you don’t look sick”. At times I wished I had a disease people could see even if it was terminal but during one of my many visits to ER, I decided I will not let people have affect on me as my 8 year old cried hard that day. He was crying as doctors were trying their best to help me breathe…upon my asking he said” Ma… I am not able to tie my shoelace” that day I decided to live on…taking each day as a new one!

Hello,

I wanted share with everyone a recent update on my husband. For 10 years he was suffering with fibromyalgia symptoms and was diagnosed with it. His symptoms became much worse and he could no longer work as of this July.

We went to docotrs everywhere from NY to Pa (hershey) to find a diagnosis. He was tested for Lyme Disease at least 20 x but was always told he didn’ thav eit. Finally we went to what is called a “live blood specialist” where your blood is analyzed on a screen. The woman who was doing the analysis was in shock and said he had severe chronic Lyme Disease. He blood was filled with the bacteria. It turns out that only 50% of Lyme appears in regular bloodwork.
From there we went to a Lyme Specialist who had my husbands bloodwork sent to a lab and they found that he had Lyme but also a co-infection of Lyme Disease called babesia which also causes great amounts of pain.
The reason I’m sharing this is because I wanted to tell everyone not to settle for diagnosis of Fibromyalgia. Please watch the documentary called “Under Your Skin” which is about Lyme. It is available via Netflix and on websites that allow you to watch free movies. You may also want to find a “live blood specialist” in your area. I truly think that many people diagnosed with Fibromyalgia really have Lyme. Everyone I meet who has Lyme say they were first diagnosed with Fibromyalgia. Lyme is an awful disease that cuases sore muscles, fatigue, causes vision changes and neurological issues.

This is a rushed post.. sorry if there are grammar errors.

Its good to know there are others who feel the same as me, i am 57 now, and have Fibromyalgia, and its not easy lving, but we do it.
Its when people say ‘but theres nothing wrong with you”, i have stopped answering, my hubby does that. He says ”well come and see her at 2-30 in the morning when she is crying in pain”, then tell me there is nothing with her.
You see I cant have anti inflammatories as i have Crohns Disease, so have to rely on codeine, paracetamol, and heat treatment.
Gods Blessings on you all fellow sufferers.

My poem:

Family Meal

I cook the dinner, stand, sit when I can,
Carefully paced to ease the task’s demands.
Potholders act as pads to ease the pain-
The weight of cookware causes so much strain;
Finally the simple task is done.
It used to be so simple, this one meal,
Yet now, it’s a triathlon, a big deal.
The family comes, the serving up is done.
We eat the meal, I think I’ve maybe won.
Perhaps this time, the pay fibro exacts
Won’t be so bad, & I won’t be so taxed.
We eat the meal, the compliments so sweet!
And I enjoy each bite that I can eat.
Too soon, it seems, the interlude is done,
The work of cleaning up the mess begun,
I help, we work together, a good team,
I don’t feel bad, not now, & it would seem
Perhaps I’ll get away with it this time,
No overwhelming tiredness, no pain mine.
Then…
Suddenly, attack is launched, tiredness descends-
Palpable, smothering weakness without end,
But as I seek to give in to the need,
The eyes droop, body feels compressed,
Heavy, reaching, searching just for rest,
I feel myself descending into sleep.
The pain explodes, shredding rest & sleep
Tsunami, earthquake, hurricane combined;
It rises, engulfs, pounds, shreds, goes deep
Pain shocks, ricochets, has undermined
A pleasant meal, a time with those I love
Pain takes it, then gives a mighty shove,
Goes deeper. The ache is in my joints,
Tender muscles, aching bones, like points
Of electric spears, drilling through each cell
Wearying me more. Tiredness looms, a deep well,
Engulfing me. I think I am in hell.
I grab the pain patches, apply them fast;
Heating pad, massaging cushion, then at last
Force myself to breathe, try & relax.
Sleep flees from me, the pain giving it chase,
Each moment is a year or more, the pace
Of battle for which one will most deface
The calm & happy family time long gone.
My husband reaches over, tender touch,
I flinch, the pain it causes is too much
Denied the simple pleasure of caress,
The love of my life unable to bless,
My life with some relief. His eyes, face
Show love; tears start trickling down my face,
And his, the helplessness to ease the pain.
My punishment, it seems, for one meal prepared
Agonizing pain, deep weariness, I can’t be spared.

Great poem Thank you for sharing

I have lived with Fibro since I was 19. Now I’m 35. Your poem rings very true. The good news for some of us is that it can get better over time. My symptoms have lessened. I hope this happens for you too. I know how hard it is to be young and disabled by something few people understand or even recognize as a disability.

I have had fibromyalgia for over 14 years (and also RA) and am happy to say that I am doing much better with the fibromyalgia than when I was initially diagnosed. After a few years, I was put on an anti-depressant and it has helped tremendously…the RA is another story. The enbrel that I was taking for 11 years does not work anymore and am hoping to find something that will…so far, no luck. Good luck to everyone dealing with this condition and I hope you find something that will help ease the symptoms.

God Bless! Only someone who has this could relate and you did it so beautifully. It did bring tears to my eyes. I had just went to Pain Management after having this for 10 year. For me it was a joke. When she said,”get up, go into the pool for even 5 minutes, and if when you go home you have to go to bed maybe you will just have to accept this. ya sure!!!! And we should get you off Hydrocone because you get a high from it and will becomes addicted. Well I have been cheated from the high all these years. And what should be so bad if I did really feel good. 10 years have been taken from my life and am now 67. If you can’t make me better,Doc then leave me alone Thank you for such a beautiful poem! Soft hugs!!

OMG! This is great, there are so many people out there that doesn’t believe I hurt as much and as often as I do. This explains the way that I feel.

Wow…..this is exactly me! Thank You for putting all the Pain and agony in to words…..!
I have fibro. most likely since i was a child but didn’t get diagnosed untill Nov. 2009.
To know that one doesn’t suffer alone is alot of help, even if there is no hope for a cure!

Thank You so much!!

Susan, Germany

Made me cry too, especially today when I’m having such a difficult day after going way over my limits in the last couple of weeks because it’s so hard to accept that I can’t do things I used to consider ‘normal’ activities anymore.

I’ve suffered from Fibromyalgia for well over 25 years already, but was only diagnosed 10 years ago. The damage that did to me, both physically and mentally (loss of self esteem), is indescribable.

On days like this it’s so hard to accept that perhaps if I’d known sooner, I could have been kinder to my body (and mind !) and maybe the damage would have been less severe ? I know there’s no point in thinking like this, but on days like this it’s really hard to stay in touch with my usual positive and optimistic self…

Anyway, just wanted to say thank you for putting this into such eloquent words…

What a perfect descrption of a day / night in the life of one who is chronically ill! I have Fibro, Hypothyroid, Type II Diabetes, Chronic Hives, insomnia….. It seems the list only grows with time! I find the best thing I can do is educate people, especially those close to me, sending links & articles to help them understand (hopefully) what our lives are like!

Thank you for sharing your poem! As we say, “gentle hugs” to you!

Excellent poem. Exactly so. Just wish we were truly seen and acknowledged for how we are and what we go through every day. Invisible illness is such an accurate description (Fibromyalgia and CFS). Thanks for the poem shared. xx

Thank you! I have lupus, and crohn’s disease. And for every ‘helpful’ friend or relative who give me that same crappy advice (my aunt just told me that illness is 85% in the head) Her problem is she just can;t accept her own! I now use Velcro Teva’s from March to November, adding wool socks as needed. Your poem says it all!

wow, you’ve got me to a tee!! Sending you a gentle hug, and thanks for the poem. It made me smile

Jennifer,

What a great poem !! Thanks for sharing. It really hits home.
Bless you and wish you many spoons…

Thanks, Christine for posting Jennifer’s poem.

🙂 Dottie

I LOVE this poem. It is me exactly! I also live with Fibromyalgia pain every day and night. So I can say that I thank the author for the poem – and May God Bless Us as we strive to live just one day at a time!!

P.S. I would like permission to print the poem and show to my family and friends.