For those also dealing with Fibromyalgia

[Debbie48]

For those also dealing with Fibromyalgia, can you describe the pain?  I've read about it, but wondered what your actual experiences have been. 

Doctor mentioned I might have Fibromyalgia.  It has thought to be periphereal neuropathy in the past.  I'm awaiting results of a skin biopsy done last week. 

My biggest pain complaint is the pain in my upper arms.  I can't even tell if it's nerve, muscle, or bone pain, but it is very painful.  Feels like there is a twiching in the upper arms as well. 

The side effects of cymbalta sound pretty scary.  Dry mouth is a big issue for me.  Just about any medication that has dry mouth as a side effect makes that issue nearly unbearable. 

Thank you for any input you can provide. 

Debbie

[Reanne]

I have also been diagnosed with Fibromyalgia.  I have no idea which disease causes which symptoms.   I am not sure how many injections it takes to get relief.  I have had arm/elbow pain before. I had massage treatment for awhile, which hurt during, but really seemed to help in the long run for awhile.  Then I was diagnosed with cubital tunnel syndrome. I had numbness in both hands, ring/pinky fingers.  I had one arm operated on and it didn't improve enough to get the other arm done.  I just received my steroid injection in c5/c6 for a bulging disk.  My arm is still going numb.  I feel like I am falling apart. I am still trying to work full time.

I hope you get some answers soon.  I just hate the waiting game.

[KellyG999]

I also have a "fibromyalgia diagnosis" but I don't think even the doctors are sure if I have it, or if the aches/pains/fatigue are from fibro or Sjogrens. As Debbie said, I don't know which symptom is from which condition. I can tell you that when I get up in the morning, the pain in my back, legs, feet, shoulders is monsterous. It's all I can do to get some medicine in me and get a HOT shower or bath. That helps a bit, at least enough to get going most days.

Good luck,

KellyG

[Cricket]

I also have fibro for 25 years.
My fibro affects most of my body. My upper back, shoulders, neck and arms, are the worse.

My muscles get so tight that I get bad headaches and nauseous.  I take Xanax, a muscle relaxer and lay down for awhile as I am unable to function, and it helps.

I also have nueropathy in my hands and feet pretty bad, I take nerontin, and that helps.

I also get a burning in the back of my legs, feels like someone has a hot poker in my legs, fibro pain.

I get massages and they are painful but help in the long run.

I too do not know what is fibro pain vs. Sjogrens.  All I know is I am in pain every day!

[Meld256]

Fibromyalgia was my 1st diagnosis 2 1/2 years ago.  I had horrible fatigue and a feeling I was in a slow-motion fog. My lower back hurt so much I could hardly move some days.  I could not stand up straight after getting up from a chair. Upper neck and shoulder pain; painful tingling through my torso, arms and legs.

Recently I've had what I call "hanging drywall" syndrome in my upper arms.  I wake feeling like I've hung drywall or swung from a rope all night.  Wierd; no strength.

My elbows hurt like I've banged my funny bone over and over. Hot showers or bath helps.

I took Cymbalta for about a year, and it helped me quite a bit with pain and increased my energy. I was able to work a while longer.  After my symptoms seemed to get worse, I was prescribed Savella and that has kept most of this to a minimum; at least I feel I'm doing as well as I can expect, and some days I feel pretty good.

  We each need to decide what meds might help us.  I hope this helps a bit.  Please keep us posted. 

[mews]

Fibro...Do we really believe there is such a thing?? I think these Dr's say we have this, either because they don't know what is wrong with us, or they just are to busy or lazy to send us for the right testing. The new Rhume I just saw told me I have Sjogrens but that I also have Fibro and just ignored everything else that was wrong with me. She told me she would have me back to my old self in no time.

What the heck is wrong with her...has she lost all of her marbles? I have so many things wrong and so many notes from other Dr's and she read them I saw her read them, but she's choosing to ignore them and say I have FIBRO....aaahhhhh!

I think this is pure laziness on her part, and on the part a lot of other Dr's.

But that's my opinion!

Stay Well
Mary

[Luna]

I have also been diagnosed with Fibromyalgia.  I have no idea which disease causes which symptoms.   I am not sure how many injections it takes to get relief.  I have had arm/elbow pain before. I had massage treatment for awhile, which hurt during, but really seemed to help in the long run for awhile.  Then I was diagnosed with cubital tunnel syndrome. I had numbness in both hands, ring/pinky fingers.  I had one arm operated on and it didn't improve enough to get the other arm done.  I just received my steroid injection in c5/c6 for a bulging disk.  My arm is still going numb.  I feel like I am falling apart. I am still trying to work full time.

I hope you get some answers soon.  I just hate the waiting game.

I had carpal tunnel syndrome diagnoses back in 2000.. I had the same symptoms as you. Got the surgery the doctor said I needed. Then he said he really ddin't see why it was bothering me. My arm got worse after the surgery. Kept getting worse and then new problems arose. My Rheumy said I may not have had carpal tunnel at all.

Luna

[Luna]

Everything I have read about Fibro, I have. Yet, my Rheumy says I don't have it. Its so confusing, upsetting to be in that area that no one really understands..

Luna

[Narablueeyes]

My rheumy hit all the Fibro points during an exam and the points from my hips/lower back down literally brought me to my knees. 

But the only joints bothering me are my ankles and feet.  My toe joints kill when it's cold. 

I'm starting to notice a little pain in my elbows and knees now.   My main muscle pain is in my arms.

I believe we can have both.

[jmkboyer]

I also have both. I can tell a very distinct difference in my pain when my Fibro is flaring up vs. my Sjogren's.  The Sjogren's is very joint-related.  My ankles feel like dry twigs getting ready to break and my hips ache unbearably.  The hip ache can be pinpointed if I poke myself right on the hip bone (which is no mean feat since I've gained 25 pounds since this darn dx).

The Fibro pain, to me, feels more like bruising or pulled muscle pain.  My tender points are most certainly my outer elbows, lower back, tops of knees.  It truly doesn't feel like an achy joint as much as it feels like needles stabbing skin.

I know this is so individual but, funny thing, I was just describing to my mother today that I'm having a Fibro vs. Sjogren's flare.  I could sense her a) confusion and b) tuning out all the way across 3 states.  It was fun.

So FWIW, and worth every cent you paid for it. 

Be well this weekend,

MB

[Joe S.]

Fibro is Dxd by your having 11 of 18 trigger points in the WHO information so if they do not touch you (pain) how can they give a DX of Fibro?

Pain...Endorphin release will help decrease Fibro pain. I drink Carrot Juice so that my body has what it needs to create endorphins. I use reflexology to send them to where my body needs them. I also use meditation to help manage the pain.  I also have used these tones http://www.chakraforce.com/Tonations.html#329. to send it into remission.

[Ali-Cares]

I didn't believe in fibromyalgia until I experienced it.  The 11  trigger points are intensely sensitive when touched and when I am extremely fatigued the everyday FM pain is intenisified and I feel much like you do when you ache all over with a high fever.  It's not much fun.  I take Cymbalta and Flexeril which helps.  I tried to lower the Cymbalta last spring and it was not good.  I can definately tell when I wasn't on the stronger dose.
The aggrevating thing was that my rhuemy and nuerologist both worked in the same office and everytime they would tell me my "issues" were because of the FM and I should discuss it tothe other doctor.  Neither one of them wanted to deal with it, but both said I had it.  I finally went to my primary physician who straightened it all out and got me back on track.  I've actually had 2 rhuemy's, a nuerologist and my primary phsician dx both FM and Sjogrens. 
Aint life grand.

[newhorizons]

And, add to the pile, osteoarthritis... am finding as I age, OA is reeking havoc throughout my body as well as Sjogren's, Fibro, Peripheral Neuropathy.

Xray of shoulders last month indicated there is a bone spur from OA on each shoulder with L being worse BUT R hurts worse since both doc and I say I use this is the arm the most. Which makes the spur rub against connective tissue and cause pain from shoulder, to elbow, to wrist, to hand and into all fingers.

Played hookie from water arthritis classes today as it was in 20's this a.m. and I could not make myself take on the weather elements much less my overall physical pain and tired feeling.

You know, believe this day of rest with hubby also gone has given me a restful day doing JUST WHAT I WANTED TO....first unstructured day since all this Xmas stuff started in mid December.

Wising all a Happpy and Heathier New Year...

[mews]

My point is when a Dr walks up to you and sticks her fingers in your hip joints and you say "yes there is some pain there" and she will then diagnosis you with Fibro...and she's going to cure you! She doesn't do the complete check like Joe said,18 points, she only checked one! Now go home and exercise and just ignore everything else and no I'm not giving you anything for pain from the neuropathy or the Raynaud's where the fat in your finger tips are almost completely gone, or the Sjogren's which has it's own set of issues that we all know about! I'm just going to cure the Fibro...WHAT AND WHERE AM I ??

I know that everyone here is in some crazy pain with muscle and joints, but I really don't believe it's a FIBRO...and that we should do the complete opposite for our treatment that we do for all our other autoimmune illness!

Why do half my Dr's say there's no such thing and the other half are trying to cram it down my throat??
I will know more this week when I see the Neurologist and he does his torture tests on me!

Stay Well My friends
Mary

[susanep]

Yes, I have fibro too. I did have the 18 tender points Joe mentioned. My husband could always feel knots in those places that hurt.

susanep