Ashamed to say I have fibromyalgia as so many people seem to think it is psychsmatic. I just say about my osteoporosis and osteo arthritis.

[Crackers1]

Ashamed to say I have fibromyalgia as so many people seem to think it is psychsmatic. I just say about my osteoporosis and osteo arthritis! as people seem to understand that better.

Is it me just being hyper sensitive or do others feel the same way?

[Lou1064]

I tell anyone who wants to know that I have Fibromyalgia, had a few negative reactions but when you've been diagnosed by a medical professional that should be good enough for anyone. Lou xx

[fenbadger]

Hypersensitive I'm afraid to say. There's no need to feel ashamed. Perhaps it says something about your acquaintances. Would you be you ashamed to wear glasses, be 5'6" or have blue eyes? It's definitely not psychosomatic, it's real and I feel for you. I have arthritis too and there are plenty on here with osteoporosis who will soon tell you much the same. Lots of hugs and feel free to browse the site. You'll soon discover you're far from alone.

[Crackers1 in reply to fenbadger]

Thank you so much for your reassurance!

[fenbadger in reply to Crackers1]

It can be difficult if the negative responses are from family but others can usually be discounted. Like Lou I have a few negative reactions but there's more important things in life than letting them get to you.

[Royalspec01 in reply to fenbadger]

Fen that's a real nice way of saying its ok to be fibro :))) x

[georgiagirlamy]

I was like that too. I actually did not want to believe my Dr I saw three doctors that told me that I had fibromyalgia so I made an appointment with one of the best hospitals in the United States the Mayo Clinic I was told then after they did lots of blood work and assessment that I did have fibromyalgia, neuropathy and myofacial pain symdrome. Tje Mayo clinic signed me up for a class that lasted a month at their hospital. They have actually been studying fibromyalgia for 30 years now and this group has now come up with A family meeting place for sprint family and friends to learn while you learn your self about what's happening to your body. My family had to come once a week but I actually stayed at the hospital for one month learning about fibromyalgia this was at the Mayo Clinic in Jacksonville Florida and this was about 4 years ago I think that a lot of people are told that they have fibromyalgia and they really don't and those are the ones that really make it hard for others to understand what those of us who really have it go through but it is getting more respect every month in the medical field I go to a therapist every month and a pain doctor each month and they both help with my understanding of how others are going through the same thing. It's kind of neat when my doctor refers to his fibro patients he says O my fibro patients there are the hardest to manage their pain because they become Immune to the medication and need a change within about every 4 months. I think that Pain Drs can tell a fibromyalgia patience from others. Don't be ashamed maybe just try to educate those around you and give them a good website to go to better understand your illness.

[Hurtingmom in reply to georgiagirlamy]

Thanks for this info. If I run the round of my Drs w/o help- I will try to connect with Mayo

[Regnofibro1]

I have had it for so long I just tell people about it if they don't know. Education is the key. Most people I have meet are interested to know more about it. You would be surprised at the number of people who will say after they find out that they are going to ask their doctors about it. It's actually more common than you think. Well at least here in the states it is. Hugs

[georgiagirlamy]

My insurance company covered it. I had to pay the Co pay but it was not that bad.

[Hidden]

Thinking of you, sending wonderful warm soothing hugs. xxx

[stumpedok]

Hi crackers. .just wondering if you have actually had people say to your face that Fibro is a psychosomatic illness? Or whether this is something that at some level you yourself believe about the illness? I honestly can't see any reason to be ashamed of having been diagnosed with Fibro...I find most people curious rather than anything else. I hope you will feel confident enough soon to tell people openly about your diagnosis. ...All best.

[Crackers1 in reply to stumpedok]

No, I certainly dont think it is myself and cant understand how you came to that conclusion! It is just the conclusion I hVe come to after thorough research. It seens to be the general public attitude but certainly not mine! Hope you are having a good day.

[TheAuthor]

I am so genuinely sorry to read that and please do not feel ashamed as Fibro is a very real condition affecting millions of people worldwide. As it ever occurred to you that somebody who is asking you also has Fibro? Please hold you head up high as you are a wonderful, unique individual who deserves better.

All my hopes and dreams for you

Ken

[mattoid-mags]

Hi crackers, I can understand your reluctance to tell others you have fibro, but you are not alone. There are thousands upon thousands of sufferers like you and I and it is a real condition. Don't be ashamed of your condition, ignorance is bliss. I feel sorry for all the ignorant people in this world who don't understand, who don't want to understand and who don't care or give a damn about no one but themselves. We may have the condition but they are the ones with the problem. xx

[Hidden]

I look upon people asking about my illness as a chance to educate and spread the word. The more people who know even a little about fibromyalgia the easier our lives will become.

[Tuscany]

Hi crackers. Many people i tell don't know what it is but when i explain it to them they are very interested. My work colleagues have been great and support me on my bad days. No one has ever said anything negative xx

[estrellaliliana]

Pardon my arrogance but I do say without hesitation I suffer fibromyalgia. It is the truth, it's not fun, but if I would find anyone doubting or thinking is not a big deal or not true or psychosomatic I automatically think that this person is ignorant and I'm above her and couldn't care less what she/he thinks. This doesn't bother me. What bothers me a little is people not liking me or fighting with me because I know more than them, unfair when I'm not even trying to show off. And it happens quite often. I came to accept that too but I'm careful what I say to who.

And I agree with MayRose54 a chance to talk about it it's a possibility for the others to learn about it. And maybe they have some info that I'm lacking about it.

[stumpedok]

Hi Crackers. ....just a thought. .but if you don't tell people you have Fibro how can you / do you expect them to understand the problems you face on a daily basis and therefore give you the appropriate support? An obvious point maybe but people can't help if they don't know the problem!

[Hidden]

Hi,I'm new new to this site, I also feel awkward to tell anyone I have fibromyalgia. Only my family know. If the doctors don't really believe you who does. All my doctor wants me to have amitriptilyn, as I'm not keen on taking medicine they don't really want to know.

[Hidden in reply to Hidden]

Hello Laurakim. When i was first diagnosed i was the same as you. But i didnt know about fibros reputation, I just didnt know how. Over the years i have learnt more and become more confident about explaining it.

I have also become angry. Angry at medical specialists who look at you with pity when you ask if it could be fibro causing the symptoms. Angry at Tribunal doctors who dont know that fibro can cause speech problems. But the the thing that gets me REALLY angry is when people come onto this site after being diagnosed and no one has explained the first thing about it. They come to us totally ignorant and it is left to us to help. It shouldnt happen, they should be given all the information but like me some are not even given a leaflet.

It should not be left to us, we are not trained, it should be up to professionals

Sorry about the rant.

If i were you i would think about giving the Amyryptiline a try. A lot of us take it, me included it helps with pain sleep and depression

Oh and welcome to the site.

Sue.

[Hidden in reply to Hidden]

Thanks sue.

[Malsy in reply to Hidden]

I'm with you there! I too refused amitriptalin. She seemed shocked. But i told her that was my choice! I felt like she didn't want to know after that. They don't say either, come back and see me in a while, and tell me how you're doing? Just left with diagnosis. Just keeping with my strong Codeine for now, which i am used to. X

[Hidden in reply to Malsy]

I too just take codeine on worse days. I don't think doctors can understand why I want to try and manage my fibromyalgia without lots off medicine.

[dillydally1]

unfortunately I am the same as you x

[ailsamary]

Never had a problem with telling anyone and have supportive family which helps. However I also have a number of other conditions but still use fibro as the main as it was that that stopped me working.

There is some research that shows fibro has subsets.- was flagged here a few months back. And at the moment juvenile, primary and secondary fibromyalgia are all recognised. Secondary is due to all the initial pain overload from other conditions. I may suggest it is this you have.

Also as an ED nurse I certainly never felt it was a psychosomatic illness, even prior to being diagnosed with it myself.

Hopefully you will be able to see it as a true illness and then be able to manage it best for yourself

[Maya23]

Hi. Here's an article you may find very interesting - it has shown that there might be a new syndrome that links anxiety and physical disorders, which means that they can't dismiss is as 'all in your mind' anymore:

medscape.com/viewarticle/84...

[Hidden]

I suffer with fibro, anxiety and depression. I've had too many people tell me I don't deserve my disability benefits as all these illnesses are fake and I should stop being lazy and get back to work.

I then feel I have to justify myself so I point out to them I also have a cancer diagnosis and is cancer a fake illness too? Funnily enough that shuts them up usually and then they get embarrassed and change the subject!

My rheumatologist was kind and said while I do have fibro I also have significant mental health issues. Some of my doctors like to blame it on that and basically insinuate I'm mad- I know I am haha, don't need them to tell me!

[Royalspec01]

Im not sure but one thing I do know is that fibro can leave me not so quick to react at times forgetful and I just don't mean hear and there. It can be noticed very fast by others without fibro. Before I had this even though knowing many nice people I know how easy it is to dish someone or say things that could demoralise someone. What im getting at is that this can leave one feeling a little to vulnerable to others and this is quite an exhausting thing too and stressful. I cant personally cope with others for too long and tire quickly and can only seem to take in some much info before im mentally exhausted. Im not so much a shy person but learning not to say to much with normal/average people. x

[Malsy]

Yep, that's about the size of it!! Gets right on my wick! Fed up not feeling understood! I guess we look ok..? Makes you wanna keep it to yourself, don't it? So yeah, Arthritis it is then!! Hahahaha. Hope you've all had a good day? 😊

[landslider]

Hi guys

When people ask me what it is I don't know what to say.

I just say it's "this thing that makes me really tired all the time and causes constant pain"

I don't know how best to describe it - what do you guys say

I am having real problems in work at the moment and I feel like people think I am just whingeing and making a big fuss over nothing - the fuss being I have asked not to do early morning shifts as they completely wipe me out and I am being told "you can either do the job you are contracted to do or you are sick and should not be in work"

That is from Managers and I am taking it further but the stress is wiping me out too.

How do you describe your fibro

Margaret xx

[Mark8 in reply to landslider]

I read your bit you wrote today and sounds like your being treated badly hope by being on here you find out more ways to deal with 1 your pain and the other your work remember your health is the most Inportant try and explaine to work what your are going thro and that your going to have good days and bad and wen your haveing a good day don't over do it because you pay the price for it for the next couple of days take them in a letter from your docs and find them a bit of information about what your going thro wish you the best of luck and hope it all works out for you take care and look after your self x

[Hidden]

When I was first diagnosed I was still working and the people I worked with were very dismissive of fibromyalgia and used to call it fibronigella and fibberalgia or anything but the proper name so I was reluctant to tell them I have it. Then I thought why should I try to cover this up and struggle so I decided I would tell them as I had been diagnosed by professionals and my work collegues and managers needed educating so I printed off as much info as I could about fibromyalgia and gave it out to them telling them how real this is and that anyone who had a problem believing it should be ashamed of their ignorance. They soon changed their minds. Gentle hugs Joolz.x

[Alegra]

Hi,

I understand where you are coming from. I kmow it is a very real illness but can't help feeling that there are people profesional or not who doubt it. I know the pain and frustration I have to go through each day with it. There are days when I simply don't know how I am going to get out of bed, I explain to my family it's as though someone has tied weights to my arms and legs and I can't get up. I do of course but it takes what little energy I have. I know when I get up and start moving things will get better but alas they always come back. I am very strong willed and try do do as much as I can to help myself as you have to learn to live with it. I can't work as don't know how I am going to be each day. I would love to work to earn something as I don't have any benefits or income. I know that if I was able to choose a normal life without Fibromyalgia I would jump at the chance. We have to have hope that we will get more proof and a cure for this beastly illness we have. Try and keep your head held high. Sending you gentle hugs.xxx

[Matrix]

Well I have never felt ashamed and I know you shouldn't be either .We none of us asked for it ,I was twelve when I was hit by this I am now 63 and have many other things wrong with me as is common with fibro peeps .If we feel ashamed it just piles more rubbish on top of what we already suffer .Hold your head up and tell them and if they say anything ,you tell them walk in my shoes for a day and you will see how real it is .Im sorry people have hurt you but put them aside and move on .Sending you a cyber hug x

[Mack59]

As mentioned by others when folks question your Fibromyalgia, education is best and I to believe there are many more sufferers than are diagnosed. I also have arthritis and osteoporosis as well as Fibromyalgia and if anyone asks I try to explain. The pain and effects of Fibromyalgia are very real and absolutely no way should you feel ashamed... Please remember you are not alone. Wishing you happy trails...

[Hidden]

I absolutely hate the word FIBROMYALGIA as it seems to have a stigma of being all in the mind.

" oh just tell her/him they have fibromyalgia and that will keep them happy"

No wonder people are ashamed of it me being one.😱

[Hidden]

The word not the CONDITION

[MsAndyIvy]

Sorry Crackers1 but would you be ashamed of say... cancer or a brain haemorrhage or flu or a cold sore?

No!

So stop being sorry. If you are worried about how you feel then seek help. There is no shame in it 😀

[Crackers1]

What do you mean by seek help? I dont need counselling! I am very well balanced mentally and was just remarking on the sitituation which is generally accepted as being the current attitude of the general public. Maybe you misunderstood? Hope you are having a nice day.