Fibromyalgia - Real or Imagined?

ftaa- I have no animosity toward you. I don't even know you. You're the only one on the thread acting like a victim. Why should anyone commend you or anyone else for dealing with pain? It's just what we need to do to survive and that doesn't merit a ticker tape parade. I haven't seen you exhibit any strength, just poor me people are picking on me. Ypu seem content staying how you are and to not look at  any psychological suggestions from me or anyone else. That says a lot.

I actually have no idea who chestnut is, though she may know me and I don't realize who she is.

I'm thinking some people don't like the stigma of being depressed.  Hey, depression is not a crime....embrace it.  It's a chemical imbalance and is not one's fault.  Being angry won't make it go away.

ADMIN: FTAA is A person you banned from this site that keeps returning to cause trouble.

Amy please ignore Angel...Charlene...Angel's man....peanutm&M and a host of other names she uses.

She wants to win a i-suffer-more-than-anyone prize/

Charlene- please you win that prize and now go home

I've been reading this thread with interest as my sister in law has fibro.  There has been some great advise all around regarding how to deal with fibro and it's issues.  I do have to say something though.  The only animosity I see is from ftaa to Amy and Blue. Calling somebody names and bashing their ability to do their chosen profession is pretty rude, imo.

Bugs

ftaa:

 It never seemed to me that you were asking for a ticker tape parade but instead were seeking compassion and support.

I don't understand how anyone can dispute that fibromyalgia is a real "not in your head" illness.  My wife's mother has it and we can actually feel the lumps that form in her back and try to rub them out.  She has continued to work, bless her heart, but we pretty much have to do all her cleaning and shopping for her.  She has good days and bad days.  Acupuncture seems to be somewhat effective for her, along with a cocktail of medications, but she does have to take it easy. 

What's sweet about her is that I've always rubbed the knots out for her.  Then, when I got sick, she rubbed my feet and legs for me with a wonderful sesame oil when I was feeling the effects of treatments.  She doesn't have a lot of strength in her hands, but I felt so coddled and loved. 

I hope all of you have people in your life to help rub the knots away.

 Anna

Please.........don't even compare the two.  You have no idea what you're talking about. 

I don't have fibromyalgia, but for quite some time I was bounced from doctor to doctor with symptoms that were alternately dx'ed as Lupus, Hypothyroidism, and depression. Turns out, the symptoms were METASTATIC BC. By the time I was dx'ed with bc, it had spread to nearly all the bones from my skull down to my thighs. I can attest to the fact that patronization and condescention by medical professionals, friends, and family members is demoralizing when one is experiencing "mystery" pain and fatigue.  It gets to a point (at least it did for me) that you start to question yourself....I finally "gave up" and accepted the anti-depressants (that only made me feel worse, BTW) and would probably still be wondering had I not finally developed a lump that my GYN could feel.

On the other hand, fibromyalgia is a disease that someone with a propensity toward hypochondria might try to "fake"...I have a family member that has spent decades seeking out hard-to-dx illnesses to adopt as her own affliction as she is a hypochondriac. Hopefully, as more is learned about fibro, there will be less doubting and more addressing the very real symptoms so many suffer.

I do hope that you all will find your way past the semantics and misunderstandings and move on to more supportive conversations. Dealing with any chronic illness is tough and it sure helps to have others who can understand.

(((HUGS)))
Diane

NS, I totally agree.  I think that having inflammation and a messed up immune system was a huge contributing factor to BC!  There are definitely patterns that I can see in my own life.

I hope you feel better.  That's not what you need right now, Blue.

Althea, I also have terrible fatigue, that my onc never seems terribly concerned about.  I also have really bad body pain, which I had attributed to Arimidex.  My rheumatologist did some testing after chemo and I have mild Sjoegrens Syndrome(sp?).  It is another autoimmune disease.  My doctors pay no attention to my fatigue or my pain.  My onc tells me I'm the only one in his practice with those symptoms.  I've never been tested for those vitamin levels either.  I understand your concern, since I have found this very discouraging.  Please don't cancel your onc appt. though.

You know, I think many doctors just don't "get" the fatigue thing. I know I was shocked when I received my records from my first oncologist. At EVERY visit I complained about fatigue, yet EVERY entry in the physician's notes taken at each visit regarding fatigue listed my "performance level" as normal. I'm sorry, but cancer or not--a 38 year old woman should NOT spend 16-18 hours a day in bed and lack the energy to wash the dishes, let alone take a short walk. Now that I've started chemo it's even worse. I'm strongly considering requesting RITALIN. 

For those of you who are not being listened to about fatigue, I wonder if you went in with specifics like, "I sleep XX hours per day and lack the energy to do XX" maybe you would get better results or at least acknowledgment of the fatigue.

Amy,

RITALIN is often prescribed in the metastatic setting to help with fatigue. I'm not sure if many here on this board have used it, but I have read posts on bcmets.org from ladies who have had success with it. Of course, everyone is different--and we all know this cancer thing is often a hit or miss experience! Thank goodness my new onc is connecting with me more and understanding me when I talk about the fatigue. I suppose, too, that it is apparent to him now that I see him weekly and he's seen the drop in my energy levels since starting chemo. (I was dx'ed already metastatic and did hormonals for 2 1/2 years so hadn't done chemo before)

I meant to add earlier that I have found a mild improvement in my energy levels when I am consistently taking vitamin D. 

Your suggestions as to how to get the point across to doctors are wonderful!

(((HUGS)))
Diane

Nurse here..Bar waves. I was dxed with FMS in 1992 along with an exacerbation of  my Subacute Cutaneous Lupus, post hysterectomy. My hysterectomy was performed because  of severe pelvic pain  due to  long time endometriosis, so said my OB-GYN doc. I was misdiagnosed. I didn't need a hysterectomy. I had FMS pain points in that most unfortunate area and had  begun to have very very painful pelvic exams...Oh well.  I had the hysterectomy in 1992. There was not much chatter  about FMS in 1992.

Post hysterectomy, I had an epidural for my post-op pain, which was  getting worse, not better every week. I screamed when my doc  began to locate my spinal injection site. He  asked me why I screamed; as he hadn't injected me yet. My Rheumy  told me the  doctor had inadvertently  touched  one of my FMS pain points. Thus began a long period of severe pain and unbelievable fatigue.

Alone with FMS, I was subsequently dxed with Rheumatoid arthritis  along with Diabetes, which was   brought on again...I had gestational diabetes... by  steroids given for RA. I  was prescribed Methotrexate...which helped the most severe pain I've ever had in my entire life..RA..swollen red joints....then  came executive brain dysfunction, diagnosed by Neurologist 2 years ago.. sent to him.via my Rheumy and am on Ritalin5 mgm  twice a day.

Now at least  I can read again. I had no idea why my thoughts  were so scattered why I was so scattered... In the midst of all that  in came inner ear hydrops  and hypersensitivity to sound...This year I  was dxed with breast cancer.  ENUF!

I have a few nurse friend with similar diagnoses...FMS etc..most of us were diagnosed in CA and have been treated well. Two of us have Rheumatoid arthritis...and most are coping. Two of us are on SSDI and we  aren't happy ...have tried to work. I can't so it. My fingers are numb   and painful but this situation is not new to me...just more intense...I have oral yeast  with chemo and have taken diflucan again and again...but I've have had it forever off and on with these various illness...Diabeties  being  the silent culprit  sometimes.

 I think my SSD Judge gave me SSDI... it took a long time, because his wife has it...and my lawyer's wife has it too...who knew.

I have had the good fortune  and  have had the  kindess most caring health care practitioners.

My first rheumy spent a lot of time trying to get me to talk about my stresses. I didn't get it. One day I had a meltdown in his office. I was in the midst of a breaking bad marriage, which was not helped by any of the above illnesses. My rheumy  spent a lot of my visits talking with me about mylife. He sent me to biofeedback and suggested a shrink... I followed his advice. He told me he was glad I had a housekeeper...my son was 5-6 years old..because I was in excruciating pain and that I might recover  because I had live-in household/child care.

I  always felt I should have gotten better with the pain situation; two of my friends did improve and are still working, but I kept on the autoimmune express.

My heart goes out to anyone in pain. 

love and soft warm hugs to all

Mina 

* forgive typos etc. 

edit:

I see that I didn't respond to the question...see my Ritalin references. I try not to respond to uniformed silly people who feel the need to say ignorant  things about anything, including my illnesses.  I did have a problem with a friend who felt I was worrying about my hair too much...I told her I would  talk to people on this board and to my other more empathetic friends and never mention my hair to her again. That's how I roll.