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Jul 6, 2016
This probably goes w/o saying, but having been diagnosed unexpectedly (ystrdy) after years of searching for answers and coming up short, I feel a lot of denial, frustration and sadness.

I am not naive to the realities, but there is a crazy amount of shame that comes w/ this dx for me. First off, we all know that FM was widely misunderstood in the past and the old school mentality around it has stuck in ppls minds.

Secondly, invisible illnesses are not given the same level of importance and aren't given the proper acknowledgement by others (including medical professionals).

Thirdly, I remember being THAT a-hole that scoffed at my mom, minimized her experience of it and made assumptions that it was just her "pill addiction" that had her making these tall tales, so I just avoided getting into any of it w/ her.


Hate this. Hate all of it, but recognize the value of having a community that "gets it" and so, I decided to swallow my pride and own my shame.

It's been a crap 10yrs, but the last 5 have been hell.

Off to sift through other threads now...
Shame on you! LOL Just kidding :)

I think many of us have probably been where you were and are now.

I had known people over the years that would mumble that Fibromygiggittywhatever word. I never paid much attention and I even thought some of those people were just trying to get away with taking so much sick time.

So, are not alone and don't be too ashamed.

I had suspected that I might have this for a while, but was just diagnosed last week. I still cannot believe that this could possible be a "syndrome". I mean, huh? No sign of it anywhere in any neurological testing? How could this be? There must be an underlying cause that these are just symptoms of, right? So, that's when the craziness comes into play and the urgency to have every test under the sun.

I hope you can find some comfort in alternative treatments before depending too heavily on hard pain killers (which unfortunately lots of Fibro suffers need). I haven't started any pain meds yet other than over the counter. I started taking Magnesium Malate last week and I tried a couple of acupuncture treatments.

Wish you the best
Welcome to the family.
Shame has never entered my head I'm lucky. U learn over time that if ppl have a problem,it's there's.not yours.u have to live with it day in day out,not them.
When ppl comment about not working bla bla bla ,I simple ask them if my not working is affecting there home life.they say well no.and I say well shut winning at me then :).work pretty well I must say.
If I sound hard I'm not really.but some ppl friends and family need to learn to love me to leave me.i don't have room for emotional stress I don't need.
Anyway hehe welcome and I hope u stick around .hugs
Forgetmenot can I have some of what you've got please! You are so strong minded...I too suffer with shame because of peoples prejudices and comments.

Not least my own parents and brother who are used to the capable me of old and deny and blame me as if I have chosen this illness. I wish i had what you have to say tough!

Before fibro I had a lot more mental strength and resilience to other peoples attitudes.

Welcome IsThisForReal...nice to meet you.

Try not to be harsh on yourself....I had an Uncle who had lots of unexplained pain fatigue and stomach issues for years. He ended up being considered a hypochondriac by all our family and suffered with depression so an easy target for that to be blamed for everything.

Looking back I think he had this illness but in the 1970's it wasn't recognized...and although I consider myself a very kind empathetic person I rather viewed him in the same way.

You live and learn x
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Welcome IsThisForReal,
Shame? No. Sorrow, grief, anger, acceptance-finally.
30 years ago when I sought help for my migraines ,(3-5 a week), I was asked if my husband was supportive and if I was happy with my life in general! Fortunately this time I was seeing a pain management Dr. for chronic pain and he recognized the FM and sent me for tests. My massage therapist noticed it first but Family Dr. didn't want to "jump to conclusions" Anyway, it doesn't matter how or who recognizes FM but that you begin the tasks of educating yourself. You must educate yourself so you know the treatments available and what questions to ask the Dr.s It is overwhelming at first but slowly you'll begin to understand some it. Please try the alternatives before you try the heavy drugs. I Have found doing BOTH really helps.
Please let us hear from you again, even just to vent.
I am sorry you feel shame.
I really understand the invisible illness aspect. I also suffer from anxiety and depression. Many people around me just don't get it. It's all in my head.
I don't think my family will ever say anything to my face (they will definitely talk behind my back, they are just like that) and most of my friends were colleagues, as I was too exhausted/feeling like hell to keep up w/ anyone outside of work/home as this started to progress over the years and now I've been home so long, I don't really see anyone.

This is going to sound crazy, but my mothers way of thinking is "yes! this means disability for life" which translates to "you never have to work again" and is enough to make me want to beat my head against a brick wall because I worked my whole life until a couple of years ago (when I was starting to get a lot worse & a back injury put me out) and I wanted nothing more than to hear that there was going to be a simple fix and I'd get back to normal one day.

My husband is the one that keeps in touch w/ people casually (he's run off his feet now), so people are always asking, but we had no real answers until now. He asked me today if it was ok to disclose the details to his employers who are always asking if we've had any updates. I broke down and didn't want him to :/

I know what people will think. I have thought those things about my own mother. I fought long and hard to stay at work, to keep up w/ my family, to find the answers and I don't deserve to be swept aside like a lying, conniving, junkie who just wants to milk the system. :( I know that's what people think of conditions that require pain management and while it may be true in some cases, this time it's not fair.

Perhaps my experiences have led me down a road that is different to that of others on this particular feeling, but having worked in community health and social services for many yrs, I know people are crap about chronic illness (doctors included). I have seen/heard/experienced a lot in the system. Fibro is one of the conditions that are scrutinized because a) a large number of ppl either fake symptoms to get a 'script or the dr's are so jaded that that's what they assume/believe. I've been to the hospital where I was accused of looking for narcotics, so my husband and I had to blast them and walk out without care because of others ignorance. My old doctor thought it would be fun to play a game on me and prescribed a placebo to test the validity of my claims. My employer of 15yrs built a case against me and created an unbearable work environment while I was suffering this illness & illegally fired me while I was off on disability. These were the same ppl that spent years discussing the social determinants of health and how all of those things had an impact on health & wellness, but felt no way about leaving me broke/broken w/ 2 disabled kids whilst off with a chronic illness, shortly after dropping all of our savings into a side business venture which is destined to fail now and on and on and on.

Worst part about all of the above mentioned? My experiences w/ my mother's chronic illnesses and my assumptions about her addictions to pain medications etc have meant that I had no interest in narcotics and my body is hypersensitive (shaking from the inside out, nausea, gut rot etc) to anything more than a tylenol, so I would really rather not if I don't have to. I don't really want to risk liver problems from taking fistfuls of pills and since, no one could put their finger on what was happening to me, I have declined the use based on those things and had no idea that my symptoms were related to FM. So I have been suffering through without any relief for years.

Do I think I will be able to go forward w/o meds? Probably not, but now that we know what we are dealing w/ we can talk about treatment. I need something. I can barely function :(

They have asked me to start taking Cymbalta (Duloxetine). I have read bits and pcs around the internet and can see that it doesn't always work. I have been taking Vitamin D for yrs because it continues to test low. We eat a fairly clean/veg diet, but things are harder now so we were slipping up and eating convenience foods because I am struggling to keep up w/ anything any more and we've started ordering a meal service to help get us back on track and lessen the load.

No idea what other people are doing for natural/alternatives for this particular illness. Care to shed some light? I have seen naturopaths and a functional medicine specialist in the past, so do take other supplements and am mindful of what goes into the shopping cart.

I am open to suggestions and grateful for the support.

Still wading through the mess...
I can't help with the no pill thing sadly. I do worry about taking pills but I take a very low dose compared to some poor ppl.and I no hand on heart I couldn't move with out them.
I also have blood tests to see everything is working .and I look at it this way. With pills I have some standard of life.if I die ten years before I should but in less pain so be it.each of us has to get through the day the best we can.i for one dont want to miss out on my kids just because I feel guilty for taking pian feel far worse knowing I can't get back the years I'd lost with them.
That don't mean I run around playing football .but I can walk out the door.
My brother was a class A drug addict.and both he and his wife are dead now,so I do understand about not taking for your mum and what u used to me one person who can say they have never thought or be wrong for thinking someone they love is faking being mum has had migraine for years and years ,sometimes 3a week, and yes I have though to myself ,oh come on mum u can't feel that bad.but she does and I've been a prat.
I think u need to find some peace with yourself .then maybe you can move forward.xxxx
My heart goes out to you...feeling like you are perceived as faking is painful on top of all the fighting youve done to stay active and working...I am pleased though you have an ally in your husband.

I know how you are feeling truly...even my own partner shocked me at his lack of understanding despite all my explanations...this illness truly is invisible... i have also become almost non functional recently after years of battling and retaining a good level of activity.

My doctor sometimes uses the term somatic and i feel so insulted i want to run away and never speak to her makes me feel shame and anger all at the same time.
I started with Vit.D as my Naturopathic told me, next is magnesium malate, a good probiotic, B-complex for stress, D-ribose has made a difference in energy and stamina, I also take a few anti-inflammatories: Bromolain, MSM,glucosmine/chondroitan (sorry for the bad spelling) and an expensive but worth it-curcumin. I can't tolerate turmeric. Some topicals help. It helps even to just focus on the sensation they give. Everyone can tell you how important distractions are; pet your dog/cat, watch movies, etc. Heat, as in shower, bath pad, mix it up with some lavender for a more relaxing shower or bath. I've even put a few drops of lavender on my pillow at times.

There are many things to try. Usually a combination of things add up to added relief.

Hope this helps.
Forgetmenot- You never really know what words will resonate w/ the ppl you talk to online, but these have. I understand the sentiment and value that input as a parent. Thank you for that.

Willow- the way I understand somatic is anything related to the body independent of the mind. does your doctor say it's psychosomatic? Is that the general consensus from doctors on fibro and is that why there is so much judgement? I was sure I read somewhere (maybe mayo clinic) that there was actual nerve damage caused by the constant stress which would go against it being "all in our heads", no? I am sure that I have seen medical documentation saying that it is neurological/physiological.

Gah. This bit alone does my head in:(

I realize no one will truly understand like another sufferer and that's why I landed here. I feel like there is really only so much I can share and make my immediate family understand about this illness and I do not want to further burden them w/ these issues. My husband is good, but to a point. He's overrun w/ other stuff, so this just makes everything that much more chaotic for all of us and while he tries to "get it", he too was hopeful that this wouldn't be a forever thing.

RuralChick- Thanks for the list. I am going to have a look into some of them. I am not familiar w/ a couple and especially not in relation to fibro. I struggled w/ curcumin and stopped taking it a couple of yrs ago. My stomach was a mess for mos. I do tend to shift focus (the only way to cope w/ untreated pain for so long), but I rest a lot which I am sure adds to the debilitation and 'round and 'round we go :/

I know deep down that fibro isn't where this all begins or ends. There are still so many other things that don't seem to fit into this label very neatly, but I am willing to try any/everything to improve quality of life. This is not living.

Ever grateful for the responses.
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