Fibromyalgia - Real or Imagined?

ftaa

I have Fibromyalgia and just saw some postings of women making fun of it as being all in one's head and bad enough to drive someone to "crack".  I wonder if there are others here who suffer and how they respond to this kind of taunting?

Even if you don't have Fibromyalgia, I would still appreciate any advice on responding to the mean jokes about it.

bluedahlia

"bluedahlia wrote:

Thank you Nicki. Fibro is definitely no picnic. I was diagnosed with fibromyalgia before my Parkinson's diagnosis so am well aware of the treatment options, which are mainly anti-depressants. Being in so much pain, continuously, body and mind, can make someone so miserable, it can lead them to crack. So please take care of yourself Nicki."

In case you were referring to my post, Please point out to me where I said it was all in one's head, and how you consider my words to be taunting.

ftaa

I don't want to get confrontational.  It's a known fact that there are people who claim it's all in one's head.  I'm asking for coping mechanisms.

One person wrote: "It is a name doctor's give to women who need to lable their misery. Some people need to have "official" sounding ailments to make themselves feel better. I know a woman who never had chemo but acts like just having surgery and radiation is worse than chemo and its aftermath. To make herself gain sympathy, she tells everyone that her cancer was worst than anyone elses because she had this fake disease."

I can't imagine anyone with fibromyalgia acting as the above person claims.  It's a condition that affects everyone differently.  Chemo affects everyone differently and some people suffer terribly with life long issues while others do not.  Surgery also affects everyone differently.  I can't understand anyone trying to compete with others who suffer.  The person above is actually stating that one thing is easier than another, without knowing the person and all the other factors that could affect them.  This person is obviously not in the medical field! 

bluedahlia

I am not being confrontational.  I am not responsible for what other people post on this forum, but you found it necessary to use a word from my post and "running" with it, alluding to some diabolical intention.  Is it just a matter of comprehension, or do my words indicate I said it was "all in one's head".  I would appreciate clarification.

spar2

ftaa, I have seen blue type on another web site that it is all in the head, it you would like me to pm you a copy of what she said I would be happy too.

Harsch

ftaa

I had Fibromyalgia prior to BC treatment and after chemo it has gotten very difficult to live with the pain on a daily basis.  As far as advice on responding to the mean jokes, I would have to say to those that have never experienced the pain from fibro, try living with the pain day in and day out. My oncologist and GP put me on Lyrica and that has helped more than anything I have used for fibro, as it works on the nerve ending pain. 

After a year of BC treatment, I have learned what it truly important and what is not.  I believe that most people are kind and caring and I also show others repsect and kindness.  I am so very grateful for every day that I have - even with the pain.  Family and Friends are very precious to me and that is where I put my energy - certainly not on people that are unkind.

Take Care of you and I hope you are enjoying a pain free day.

 Gwen

bluedahlia

Spar. I said it was an "Illness of the Mind".  Parkinson's Disease an also an "Illness of the Mind".  So am I saying it's all in my head too?

Parkinson's Disease

Also called: Paralysis agitans, Shaking palsy

Parkinson's disease is a disorder that affects nerve cells, or neurons, in a part of the brain that controls muscle movement. In Parkinson's, neurons that make a chemical called dopamine die or do not work properly. Dopamine normally sends signals that help coordinate your movements. No one knows what damages these cells. Symptoms of Parkinson's disease may include

* Trembling of hands, arms, legs, jaw and face
* Stiffness of the arms, legs and trunk
* Slowness of movement
* Poor balance and coordination

As symptoms get worse, people with the disease may have trouble walking, talking or doing simple tasks. They may also have problems such as depression, sleep problems or trouble chewing, swallowing or speaking.

Parkinson's usually begins around age 60, but it can start earlier. It is more common in men than in women. There is no cure for Parkinson's disease. A variety of medicines sometimes help symptoms dramatically.

Parkinson's disease is a disease of the nervous system that causes people to lose control over their muscles. About one in every 250 people over the age of 40, and about one in every 100 people aged 65 or older, are affected by Parkinson's disease. Although the average age of onset is 57, Parkinson's occasionally appears in childhood. Men are more likely to develop Parkinson's than women.

In itself, Parkinson's is not a fatal condition. However, the end-stage of the disease can lead to pneumonia, choking, severe depression, and death.

ftaa

Bluedehlia, saying it could lead somebody to "crack" wasn't appreciated. 

Spar2, thank you for your response.  It's okay, Blue already responded to that.  I was really hoping this thread would be advice about the Fibromyalgia controversy and how others feel about it and how to respond.  I don't think there's a Parkinson's controversy.

Harsch, Thank you Gwen, that is excellent advice and I will take it.  I get so tired of hearing others who have no idea about this horrible condition be so flippant about it.  They are not worth the energy though which we are limited in and the stress it causes just aggravates our condition!  I need to remind myself to take care of me, and let it roll off.  You take care of you too, and wishing you a pain free day as well!

SoCalLisa

I take Lyrica for neuropathy, but it is also prescribed for fibromyalgia...

bluedahlia

Neurontin is good too SoCal.  So is Mirapex, but I wouldn't recommend it.

bluedahlia

ftaa, I don't know about you, but being in pain day in and day out can lead someone to "crack".  Sorry if that offends you, but how that equates to an illness being all in one's head confuses me.  I know when I was being treated for fibro, I was ready to crack.  That's why it's important to find the right doctor, which in most cases is a psychiatrist, who can prescribe the right meds.  Also, I was using PD as an example, as there are similarities in the early stages.  

Harsch, I can imagine what chemo would do to any pre-existing neurological problem.  That's why I opted out of chemo even though my tumor was 1.5 cm.

ftaa

My doctor is a Rheumatologist, as are most doctors for Fibromyalgia, not psychiatrists because it's not a psychological condition.  Bluedehlia, I was referring to the post I quoted in regards to the illness being all in one's head, not yours.  I'm Really surprised you were misdiagnosed because the symptoms are not all that similar with Parkinson's.  It really Is important to find the right doctor!

Lyrica and Cymbalta are the two FDA approved meds for the treatment of Fibromyalgia. 

bluedahlia

The early symptoms of PD were extreme fatique, sleep disorder (I went to a sleep clinic), depression and muscle pain.  To this day I still don't have the shakes.  It wasn't until 2 years later that I started to experience bradykinesia and loss of arm swing that things started to become clear.  In the meantime, I had been treated for 2 years for fibro by a rheumatologist who worked closely with a psychiatrist.  I did physical therapy and was on many different drugs to try and break the pain/depression cycle, but nothing worked, because I didn't have fibro, and I was ready to crack.  Going to a psychiatrist has such a stigma attached to it.  Shoot, if they can help you, go for it.  They are much more knowledgeable in this area than a rheumatologist.

Mirapex is also a great drug for fibro as it works on certain receptors in the brain that can help break the cycle as well.  However it has some pretty nasty side effects so I'd stay away from it.

Anonymous

Well here is what I think.  There are many people out there that don't understand Fibromyalgia.  Those that suffer from it always seem to have to explain what they are going through. ftaa you mentioned a Rheumatologist, and I sometimes wonder if it isn't an immune system response similar to RA.  What concerns me is that so many of us have it.  Some mild and some more severe.  It also seems to me that alot of women have been diagnosed with this after BC.  Wonder what the connection is.  Or vice versa.  Women with Fibromyalgia get BC! 

Blue:  I understood exactly what you were saying.  What I find so horrible is that you were diagnosed with Fibromyalgia first.  This nasty disease masking something even more severe like Parkinsons.  Not only do you have the chronic pain, you have the physical symptoms of tremors, freezing, and lack of muscle control.  Makes me a little angry you were not diagnosed sooner.

SoCal:  It's intertesting from an inquiring medical mind.  Lyrica, neurontin, antidepressants, pain medications.   Don't know why, but they work dont they.

Gwen:  Hi and nice to meet you.  Sorry you are having to cope with BC and Fibro.

Anyways, I personally think this is a great subject.  Ignore what was written elsewhere.  I think it would be very interesting to see how many of us have this diagnosis.  We could teach each other and also help each other cope, especially when we have friends, family, and caregivers who don't really understand it. I find it very hard to cope with a demanding job where some days I'm good and other days, I'm just dragging and praying for the day to end. Like today!   And yes Blue, I felt like I was gonna crack.  Even went to my administrator and she let me leave early.  I must have looked pretty bad lol.

Nicki

Isabella4

I have Fibro. I have had a 'label' on it for about 8/10 years. My GP does not really believe me.

About 25 or so years ago I was in a car smash. I had whiplash, went from bad to worse with pain from the whiplash, down  one arm, then the whole of one side, then it gradually permeated thru my whole body. I was very, very active outdoors type person before all this, and gradually I had to learn to pull myself up, and work in spurts of 3 or 4 hours, between painkillers. (without painkillers I was a wreck, just could not function)

Then I started to get very, very tired, got up to work, then just zonked out as soon as I was finished. I got Glandular fever, that laid me low for about a month. All this time I was going to my GP, she was dismissive and unbelieving, I didn't want anything from her, only some help from some sort of specialist to help with the chronic pain. She sent me to a psych. He talked to me for a few weeks, and pronounced that I had ME.  (think he got that one from the Glandular fever) Still my GP didn't seem to believe what I was now being told. I was so bad by this time now I was using a walking stick.

My DS told me to 'pull myself together' and my DH just told me I was using all of my "pain" to get me out of doing things I didn't want to do. I used up most of my time  running my business, which I loved, so that when it came to keeping up with jobs around the home I would normaly have laughed at, I just went and laid down, gathering my strength for the next days work. I would be in bed most evenings by 7pm. I appeared to have suddenly gotten lazy....I got some relief from laying down...a little more relief if I turned on the radio, and relaxed listening to it, which to DH looked as if I was the laziest woman he knew.

I asked my GP if I could see a rheumatologist, and he gave my my diagnosis in 2 appointments.

Apparently there are about 14 or so 'points of pain' around the head and neck (why not the rest of the body, its just the same pain all over !) I yelped at all the right places, I would yelp if anyone touched me anywhere !! 

I have tried Neurontin, didn't work for me. I am trying Lyrica, but this seems much the same as the Neurontin.....nothing much takes away the chronic pain... I get relief from a long hot shower or bath, an early night, or prescription painkillers. I even tried canabis, but it just didn't touch me, I was expecting to be rolling in the aisles, giggling and laughing...but...nothing !!

So, I find Fibro a VERY real condition. I also suffer from neuropathy in my 'bad' arm, that sorta stands out above the general body pains, it feels a sorta stronger pain. I describe it as a 'long lump' of pain hanging down my side !  I now and then will have a few bad days, where the whole of my body hums with pain ....I just take to my bed and sod everyone else nowadays ( I have had to ring DD on more than one occasion to come and bring me something to eat. DH gets very resentful sometimes when I am not up and kicking !!!!) Equally so I can get half a day sometimes with not much pain at all. Then I go and spoil it all by dashing around trying to get as much as I can done, which makes the pain, when it returns, a lot worse.

Isabella. 

NoH8

I have fibro. I don't care what othert people say about it or if they don't believe in it, that's their issue. People are going to think what they're going to think, if they aren't open to learning more about my day to day struggles, so be it. My energy is precious and too valuable to waste on people who are toxic or who just don't get it.

Why do you feel the need to respond to what you perceive to be taunting?

The ability to laugh at yourself can be very therapeutic, I think that assuming that people have good intentions is the best thing, until they have more than once proved you wrong.

Strategies 1) Don't feel you need to defend yourself 2) learn to laugh at yourself 3) assume the best from people 4) lighten up. Don't look at life as if you have to cope with things. Be confident in who you are and make the most of the energy you do have.

Anonymous

Amy, yep - some days I have a skp in my walk and some days I don't!

Nicki

NoH8

Yup. I have to really listen to my body or else it punishes me.

otter

Well, I spent my whole 25-year professional career in biomedical research, and one thing I learned was this:  Just because medical science cannot explain something, doesn't mean it does not exist.

IMHO, fibromyalgia is one of those medical conditions that is so poorly understood that many docs refuse to recognize or acknowledge it.  I could use lymphedema as another example of something that is poorly understood and therefore denied, but I'll hold back on that 'cause it has its own forum here. 

I do suspect that much of what we think we know about fibromyalgia will turn out to be wrong.  Is it an inflammatory disease--which you might expect, when it's studied by rheumatologists--or is it something else?  Or, is it a disorder involving neurotransmitters and pain perception?  Are the "tender points" really relevant, except that they are, in fact, tender, to someone who has fibromyalgia (i.e., what's going on in those sites)?  Why are women afflicted in much greater numbers than men?

That's all I can come up with, off the top of my head.  Gentle hugs to all of you who suffer aches and pains because of this.

otter 

coonie

I have fibro too.....was diagnosed about 10 years ago. I just wanted to mention that I was asking my GP about the drug Lyrica (sp?) that I've seen advertised and he said not to ever take Lyrica while taking Arimidex ?? Has anyone heard that? Seems that my fibro has gotten worse since finishing chemo. Of course, it could be the Arimidex too

spar2

Blue, I do take offense when you say it is a disease of the mind. period.

LC4909, so glad to meet you and hope you get some relief soon.  Arimidex does cause a lot of aches and pain.  I have been on it 4 1/2 years

Gwen,otter, Isabella, so glad to meet you all and pray you find pain relief from this misunderstood disease.

bluedahlia

Otter, I hear ya.  Many doctors now include "Cognitive Behavioural Therapy" as part of the treatment for fibromyalgia.  Not too sure what that entails.

ftaa

Bluedahlia - I have nothing against going to a psychiatrist, I just don't think it's the main doctor for Fibromyalgia.  Certainly there is a place for a psychiatrist, along with your Rheumatologist, GP, Massage Therapist, Behavior Modification Specialist and others for this condition.  I think a team of chronic pain specialists is often in order here, specifically if you have a moderate to severe form of Fibromyalgia.

Chemosabi - I definitely believe it's an immune system response along with the brain not firing right when it comes to the pain signals.  It could be that many women who suffer breast cancer are just at that age when Fibromyalgia is commonly diagnosed, or could have to do with the same immune system response that may have caused their cancer.  I'm glad your medication works for you.  For many it doesn't work well enough and they are still unable to hold down any job, let alone a demanding one. Like any condition, we can have a mild case or an extreme one.  It can be like night and day so even within the community of those that have Fibromyalgia it can be misunderstood!

Isabella - I hear you loud and clear.  I am so so sorry about your DH.  He needs educated desperately.  I feel so much as you do and the vicious cycle of getting something accomplished and then paying for it majorly never seems to end. I even have the arm neuropathy and you describe it well.  The neurontin has helped lessen that most of the time. For me, nothing much gets done. I used to be somewhat anal but had to learn to let it go. I'm glad you loved running your business and left the home jobs go. There are web sites and books to inform others.  Have you tried pointing your DH and DS in their direction?  You're dealing with just why I started this thead.  People look at you and don't see any symptoms so there must not be anything wrong.  Unfair!

ObamaPresidentWeWon - That's true that it's someone elses issue if they don't believe in it but it can be very much your issue if you're surrounded by people who don't buy it, like Isabella is.  I'm not speaking just about those who posted earlier that prompted my original post but you know there are people who make fun and discount what we are dealing with.  I started this thread to get some good responses and find out how others cope. Your strategies are great ones though!

Otter - Thank you for that, how true that it doesn't mean it doesn't exist if it can't be explained!  Right now I believe that it's a combination of a pain perception disorder and an inflammatory disease as a result of an autoimmune disorder. Whatever it is, it hurts like h4&&! I have increased levels of inflammation that regular advil would never touch.

LC4909 - Lisa, I don't know the answer to your question, hopefully somebody will come along who does.  I take Neurontin for neuropathy and I'm also on Tamoxifen.  Sometimes it's hard to tell if it's the drugs or the condition causing the pain to worsen!

Anonymous

Blue:  Seems to me there should be a team of doctors helping with the symptoms of Fibromyalgia.  Rheumatologist, Neurologist, and Psychiatrist.  If part of our treatment is antidepressants, then a psychiatrist plays a big role in treated the disease.  Many people forget that the Psychiatrists job is to  manage medication.  If someone needs counselling they should see a psychologist which I also think is an important part.  Learning coping mechanisms and how to change one's thought process.  . 

ftaa:  I don't think one can determine the severity of Fibro based on ones ability to work or not.  I don't work, I don't eat.  I had to work when I was getting chemo too.  Not saying it was easy but I just didn't and don't have the luxury of being able to stay home.  So we cope.  We take our good days with the bad.  I didnt say mine was managed well.  When I have a bad day, I have a really bad day and no medication works.  When I have a good day Im on top of the world.  

Spar:  I didn't know that you actually have fibromyalgia.  It's much different having it, then knowing someone with it.  Not sure why you took offense at Blues statement.  Often it is a disease of the mind.  JMO but when someone lives in chronic pain - it does affect your mood and how you think.

Lisa:  I can't help you with your question because I'm er/pr negative.  So no aromatase inhibitors for me. 

Nicki

ftaa

Chemosabi, well, yes you can.  People are literally disabled by fibromyalgia and cannot work.  They cannot function or hold down a job and are on disability.  Their days are bad and then they are worse.  It's hardly a luxury for them to stay home.  So I think I would determine that these are severe cases.

Anonymous

When you say "people" it doesnt mean everyone.  Any disease can have different stages of severity.  Just like breast cancer.  We cope with our individual problems the best we can.  Believe me I have my bad days. Its just not something I talk about very much.  Another thing to cope with.....individual perceptions.  For me - having to go to work yesterday was tough.  So in my eyes, staying home would have been a luxury... for me.  I have no other options but to push myself day after day.  Unless I want to lose my house and turn into a bag lady lol. 

Nicki

ftaa

I didn't say it meant everyone.  I said the ones who are disabled and who working isn't an option for could be determined to be severe cases.  They don't have any good days.  They have bad days and then they have worse days.  They are unable to push themselves and couldn't work whether it meant losing their home or not.  This is not to say that those who do work do not have a bad case of fibromyalgia.  But it is to say that you can determine that those who are disabled and cannot work can be said to have an extremely severe case.  I find one of the hardest things about this condition is to appear healthy on the outside but to be screaming in pain and exhaustion on the inside.

Biker54

Nicki, I had no idea you had been diagnosed with fibro.  You are usually so open about your health issues, I am surprised that you haven't discussed this before.  I hadn't realized how it had impacted your life.  I'm glad you have good days and are able to live your life.

NoH8

Blue- sorry you're getting the brunt of people's anger. I agree with much of what you're saying. Cognitive therapy is helpful for a whole host of things, particularly depression which can accompany fibro. Being in constent pain is hard of the mind as well as the body. The body has a hard time being at it's best when in pain and when depressed so it can become a viscious cycle. Psychotropic drugs in subclinical levels have also been shown to help some fibro patients, particularly effexor. Additionally, biofeedback, hypnosis and other psychological interventions can be really helpful.

ftaa- you really seem to be looking for ways to assume blue is saying things to hurt you, when I didn't see anything that I would have interpretted to be hurtful. Interpretation is important. I think you;'re sensitive about having fibro and are projecting that to mean people are saying things to hurt you. Eleanor Roosevelt said, no one can make you feel inferior without your consent.

ftaa

ObamaPresidentWeWon - What on earth are you talking about?  I already responded to Bluedahlia and said, "Bluedehlia, I was referring to the post I quoted in regards to the illness being all in one's head, not yours."  This thread was started as a discussion for those that suffer and how to cope with dealing with people who make light of it.  Sure it was prompted by some things I read on here but it's a real issue with people whether you'll admit it or not.   I don't feel inferior one bit because I have fibromyalgia and I'm not sensitive to it either.  You don't even know me. 

bluedahlia

Thank you Amy.  Many doctors like the multidisciplinary approach to try and solve many of the underlying problems.  My Movement Disorder  Specialist feels that I still have the fibro because a lot of my pain issues don't fully add up to PD, but that's another story.  LOL!  If I do have it, my parkie meds (the dope in dopamine replacement hehehe) seem to help, which leads me to believe depression is a large contributing factor.  I know that the meds help my RLS as well.   OK, I admit it, I am an official mess.