Fibromyalgia

So, got the diagnosis finally... only took last 6 or 7 years or so.  I know this may not be the right board, but I consider this my "home" board.  So venting my frustration here.  

Don't get me wrong - after years of mind numbing pain and mis-diagnosises, I am happy to have a name to what's wrong with me.  But my vent is coming from my anger at the years I went without assistance and without knowing what was wrong.  I have been tested and stuck like a pin cushion and had MRI, CAT scan, etc.  You name it, it was done.  I even went through months of walking with a cane.  I thought that I was on my way to losing it with the pain and issues I was having. 

But as I sit conflicted about my health and my future - there is one thing I am relatively sure of, 95% of my previous doctors can suck it.  lol.  I don't know how many times I heard "When you lose weight, everything will get better."  or some variation thereof.  It just makes me mad that I spent all of this time hurting because I was often looked at and dismissed, once they saw a fat woman, that was my problem, and basically my cure all would be to "lose weight." 

I lost the weight, and it didn't magically cure me.  If anything, my symptoms seemed to increase or maybe I could just feel more.  

I am crabby tonight, so my thoughts are drifting to things that make me upset.  And as I am also in a lot of pain this evening... my drifting thoughts have found a spark to land on and set themselves aflame. 

I am sorry this has happened to you. Hopefully with the "right" diagnosis you can find some relief. I hope you don't  find this rude....would you mind sharing some of your symptoms? I have some significant pain issues and have been told by so many docs it would greatly resolve with my weight loss...so far I have lost 140+ lbs since March 2012 ( 60+ since surgery) and my pain is worse and I feel discouraged. Did you see a doc that specialized in Fibromyalgia? Please feel free to friend me if you care to respond. I will understand if you would rater not as I understand the personal nature and frustration of constant pain. Either way I truly wish you luck.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I'm so sorry to hear of your diagnosis, yet so glad you finally got an answer you can now treat accordingly and get some relief hopefully! I totally understand and empathize with your anger and frustration and hurt that you don't feel they took you seriously, rather dismissed your symptoms as " just weight related"! I have a sister who was never over weight, but was also seriously misdiagnosed for years and treated like she was just nuts, until the proper tests revealed she'd been living with a serious illness. I'm sorry you have not had the right diagnosis and support, and pray tonight that you will find some peace and relief in knowing youve finally had your struggles validated, and now can begin the process of proper treatment that may bring you relief from pain !

i will keep you in my prayers..... And if your anger turns to needing a good long cry, well, let it go! Here's to finally being able to figure out how to take care of yourself, with the help of some professionals who " get it! "

Sending big hugs! 

Christina from up north ( hope to meet you some day!)

I have FM and one of the things I wondered is if losing weight helps the symptoms. I asked that question on the FM board and most said that the pain levels etc. did not change. The medical community really needs to "listen"  to people and hear what they are saying. At times I think they only "listen" visually...see a fat person and automatically assume that the problem is weight. I have surprised medical staff at times because they have assumed that because I am overweight that I have high blood pressure (I am at a low end of 60/80), high sugar levels or diabetic (not) or high cholesterol (not). My GP says I have good genes lol. But I have faced discrimination from medical staff and that ****** me off royally. I have my first consult on March 1st and am hoping that the FM won't hinder me having the surgery.

 

Although the diagnosis sucks I am glad that you have answers and can start some type of treatment plan. It is a very tricky illness to treat.

 

As far as symptoms: imbalance, pain in my joints (like someone has taken a hammer and smashed me), temperature fluctuations, lose of strength, terrible fatigue, insomnia, sunburned feeling, forgetting common words and difficulty completing sentences at times, forgetting someone's name or even how to start a car. There are so many symptoms and everyone may be a little different. 

I am so sorry for all your suffering, and sorry as well that your diagnosis is for a condition that is so hard to treat.

I have psoriatic arthritis and have also been admonished to lose weight. Well, when I weighed a normal weight I was in severe pain then too.

Autoimmune disorders suck. Here's hoping you get some good treat,ent and pain management!

I have quinonlone toxicity syndrome which mimics man of the symptoms of Fibromyalgia.  I too have run into doctors who say, when you lose weight you'll be able to walk again.  I lost ability to walk when I was about 40 lbs overweight...I am realistic if nothing else.  My pain has decreased yes it is easier to drag my less fat body around...but walk...doubtful.  In fact, at my surgeons office when I was wheeled into my pre-op class the counselor said..."wow next time I see you, you'll be walking."  I could see the nurse behind me shaking her head like shhhh.  I said well probably not.  Oh but you will she said, have a little faith.  I put on that face that hides my emotions, sighed and said nothing. Fibromyalgia like many diagnoses is one of exclusion. Once they have run every test imaginable and can find nothing else, they diagnose people with fibro.  I always tell people to keep going to the doctor.  If you feel like something is wrong, change doctors, get a second, a third, or as many opinions as you need. I should have done that when I felt my ability to walk decreasing.  Instead I took the word of the doctors, who were taking the word of the drug company that the medication would not cause my symptoms.  Then four years later, the drug company admitted they omitted data which would have warned people that their drug could cause horrendous tendonitis including but not limited to  ruptured tendons.  Now the drug has a black box warning.  So follow your instincts.  I hope things go better for you now.

I understand totally, I have autoimmune liver disease and it shares many symptoms with Fibro (plus attacking liver).  Because i was fat for so long, I didnt notice the symptoms of fatigue or soreness or weakness.  I was really fat after all, that must be the cause - so the docs told me.  About 8 yrs ago my liver finally tanked and the real cause was found.  So, because of the weight i had, this was undiagnosed for many years and at that point damage was done.  Took years or messing wiht pills to get it under control.  Luckily stopped progress just before it would have made be ineligible for WLS.

I'm sorry to hear that your fibro symptoms havent lessened.  I am certainly hoping for mine to improve.

Well, it sucks that you have FM, and that it took so long for the medical people to figure it out. I have a friend who was told she had FM, but it turns out her pain was caused from her hips being bone-on-bone. It took several years, and lots of doctors who dismissed her before she finally got one who figured it out. She was super skinny, so I think there is just a problem with medical people not listening to people, they are always in such a rush.

For all of you with fibro we have a forum here and while it's not real active usually one of us is around or checks the forum. It is a sucky disease and we need all the support we can get. I'm in my 60's and have had fibro since I was in my late teens yet it too****il I was in my 50's to get a diagnosis! So I know the frustration, for so many years we were just considered hypochondriacs. It is good to know we really weren't crazy! Anyway if you have questions or need to vent we are glad to listen!