Infuriating People

Hello all. I saw a pain specialist today who compared fibromyalgia to a stubbed toe because it isn't, in his words, "fatal." I lost a bit of hope in humanity at this. Anything to cheer up a 22-year-old with a broken spirit?

- tophat

[Malwimmy27]

That's incredibly insensitive and ignorant on part of this 'specialist'!

Ok so it's not fatal, doesn't stop it being incredibly painful!

How did you manage to keep your cool?

Perhaps it would be a good idea to look for a support group in your area. That way you'll be able to meet with people who can tell you how they manage day to day.

It can be a shock when you're first diagnosed. At this forum there will be lots of friendly knowledgeable people to answer any questions you might have.

I am sorry that you have fibro and at such a young age. There is help out there, it's often a case of knowing where to access it. A positive to note is that fibro is more recognised and becoming more recognised.

I'm sorry if this is difficult to read, I've been up most of the night.

I hope this has been helpful. Gentle hugs to you tophat.

Becky X

[TheAuthor]

I am so genuinely sorry to read this and I sincerely hope you are not too offended by this thoughtless individual? From a personal position I would have explained to him exactly how he made me feel and that I would rather see a different specialist as I had no confidence in him to treat me in a manner expected by the NHS due to his lack of empathy to my suffering.

I would then write down everything that was said as to make a report to his trust. As medicine is a science not an opinion and good practice derives from science and not from opinion. I would also have said this to him. If you point this out to his trust I am confident that they would discuss his comments to you as the NHS has a commitment to equality regardless of what you present with.

All my hopes and dreams for you

Ken.

[Betty67]

Beauty fades stupid is for ever.

There are health professionals out there who do care and I have found they out number the others who don't think before they speak. Never give up or give in. X

[Hidden]

Thank you all for the kind words. I kept my cool because I was mostly in shock. I was diagnosed with fibro 4 and a half years ago, and my life has been deteriorating during that time, luckily I have great, supportive parents. I really thought seeing this doctor would give me some hope, but I was given another medication and a "see you in a month." Now to see if these pills work, I don't have much faith in anything anymore.

- Amanda

[Ginsing]

If you are a patient person then follow Ken's suggestions. He is right the specialist has a duty of care to the very best of his ability.

Good luck Take heart that fellow sufferers know it is not fatal but we do have

to commit to learning the best a[ approaches to survival.

x ginsing

[Hidden]

There are still slot of people out there who are still ignorant towards fibro including medics. There is a debate in parliament on 1st July (I think) on fibro. Hopefully there will be more understanding afterwards. Fingers crossed.

[fenbadger]

It amazes and appals me that a health professional can be so unprofessional. Even if they believe it that's the sort of opinion they MUST keep to themselves.

Try this thought : a wise friend said to me "an earthquake in Mexico does nothing to lessen the pain of you ingrowing toenail" In other words, as much as there's more suffering out there, yours is just as real. Fibro itself isn't life threatening, true and that's another debate, but is life changing.

[Hidden]

We must remember that doctors are just people like everyone else. Some were A students in school, others were C students. They also say that no matter what you do, at least 20% of people we meet we will not get along with. Also, some doctors keep up with current illnesses and others are just too lazy. Sounds like this doctor may be all three. Find another doctor is what I recommend. Or take a hammer to any part of his body and say, that is what my whole body feels like all the time. Get a clue. Then walk out.

[Hazel_Angelstar Administrator FMA UK Staff]

With the forthcoming merger, it may be useful to let members know that FMA UK have a health professionals booklet which can be sent out to any health professional who needs educated on fibro.

You can request a copy at fmauk.org click on INFORMATION, MEDICAL PACK, REQUEST A PACK FOR YOUR GP

Hazel x

[Artyrosie]

I suggest that you tell this man that a diagnosis of a lifetime's pain is actually worse is some people's eyes? You really should expect better from an NHS pain specialist!! He at least should have some understanding of how constant pain poorly controlled drags you down? I really hope for your sake that the medication works for you.

[Hidden]

Maybe you should have stood on his toe and asked him if it hurt! Even a stubbed toe can be extremely painful it may not be fatal but try living with it every day

[mimiwen]

Doctors can be so stupid! I'm afraid they are trained to deal with bodies not emotions and many of them are emotionally very inadequate themselves. It was such an insensitive thing to say but I expect the idiotic man thought he was being encouraging!!

Sending you much sympathy,

Mim xx

[panda60]

Brings to mind when my elderly mum started to lose her sight from macular degeneration and was told she wouldn't go totally blind. No problem there then! I hope you can get a referral to another doctor. Have a word with your GP too.

[cctexan]

Lol.. Nope not at 4 am... I feel your pain. I saw my rheumie Thurs for the lupus and couldn't get her to look at me or answer my questions. I was so disappointed.

Don't give up, find a specialist. Start over w drs. I'm taking a break from all that, but bwill start again soon.

I had the dx of this stuff, then broke leg and was in wheelchair and then told I needed biopsy in tongue, and then got fired by new psych .. All in a 4 week period. My body is reeling. My mind is whirling and I hate drs right now, don't trust them, aren't impressed and we pay for those Mercedes they drive!

I refused to leave the room at last appt as she did not answer us. So she had to come back. And still forgot my meds. ( I can't take ultram, she won't prescribe pain meds, and every lupus symptoms was chalked up to stress). Er, OK but the stress needs to be addressed how?

Can she stop the ulces the sun blisters? She finally said I don't have much of a case of lupus , only mild connective tissue, and I won't die. That's good.. But how did she come up w this ? Lol she didn't take medical history or symptoms... She just gave me the planquenil and waved goodbye.

Arg. I do take baclefen to muscle spasms from my primary Dr. Works wonderfully, along w. Lyrica

Bought a tens unit, do mindfulness meditation, baths, yoga as best I can til cast comes off, eat well and rest. Focus on better things instead of illness.

Went out for ice cream last night, boat rides be friends at sunset, read a good book, enjoy a hobby. This the only life we get. I'm not wasting it anymore on stupid drs that run me around , they had me at 12 appts in a month. For three drs. Morons.

Anyway, don't focus on problem but solution of calmness. The medical community isn't the best answer always for me. They were the ones pushing my wallet and anxiety... And then the pain got worse!

[tulips123]

A Specialist?! He may have a piece of paper to say so. Beg to differ in the real world!

Tulip xx

[Poppy-poppy]

Hi, I was told by one specialist that it's like the bulb is gone out and if I do a little bit more each day that I will find the switch to turn it back on and I will be well again, will I I said , fine, and got up to leave, earlier on he told me that he was going back to his homeland of Spain, all I thought was good job go. One of the doctors in my practice told me that in time I would become better and that I would be able to go hiking and ride my bike again I WISH, went to another doctor and she is absolutely wonderful full of understanding and has all the time in the world to listen to me and help me so at last I know there is someone who will help me when I need to change my tablets or just listen to me, I wish that everyone had one, but I had to kiss a lot of frogs first.

[Hidden]

I should also probably mention that I'm American, and the health care system is more than a bit backwards here.

[Hidden in reply to Hidden]

By here, do you mean UK?

[Hidden in reply to Hidden]

No, I mean that it's backwards in America.

[Hartleyhare2]

My Rhumetologist was useless. Told me to walk up some stairs in the hospital and come back and he checked my pulse. Said I may have it and gave me a leaflet and that was the last I saw of him. I was in complete agony and like you in shock. I found out from a friend who works at the hospital that he does not believe in Fibromyalgia! I complained to my GP and Diabetic Consultant at same hospital and wrote him a letter telling him what I thought of his callous unprofessional attitude. A week later I got a letter from him just one paragraph but confirming a diagnosis of Fibromyalgia. They are not all working in your interest but I believe most are!

Keep going☺️

Regards Patrick

[Hidden]

Edited By Admin

My experiences only this week:

Radiographer1- performing ultrasound - ''Face the other side, you're breathing on me''. Now I don't breathe with my mouth and I wasn't particularly breathing in her direction anyway. I know they'd prefer we didn't breathe but hey ho.

Meanwhile it was ok for her to get gel all over my top, because she couldn't be bothered to move it out the way. Or ask me to remove it. This is just a fraction of the nonsense I got from this woman.

Radiographer 2- doing X-ray - Man handled my arm onto a pole, which she could easily have asked me to do myself. She was so rushed doing the X-ray she just made the experience horrible.

Head of the Clinic - It took over 10 mins for her to explain that having found a small lump I'd have to have an x-ray and ultrasound. Whilst ignorant of her own gibberish she patronisingly said: ''Do you understand what magnify means?' I kindly spared this glorified administrator any embarrassment by not answering that question.

Despite the above and many similar experiences. My Rheum was excellent, but then he was double Cambridge graduate; who had done Anthropology and Medicine. So the calibre of the person plays a part. The ignorant ones are the worst. Mostly because they are always trying to hide their incompetence and stupidity, with bullying or otherwise demeaning behaviour.

[JayTon]

I am in the process of changing my rheumatologist as I find him totally useless! He said to me have you tried walking!! Exercise is good for you! NO really, I told him I am not a lazy person, he said oh no I didn't mean that.... Oh yes you did. Put me on pills I had before but at such a low dose they obviously did nothing, now increased them. I don't know about the rest of you with fibromyalgia or CFS but the pills only appear to work for a period of time. I went to pain clinic and when I completed the questionnaire I put 10 for pain... He said for that you would be dead!! No if I was dead I would feel no pain. Idiot. Good luck. Change specialists, find someone who will listen and at least try to help.

[andi1]

Hi there that specialist is thick im 33 and had the pain for 2 years trust me it not like a stubbed toe, the pain is like you been beaten by mike tyson it's that bad but chin up hun try and keep smiling okay

[Hidden]

I'm sorry to all of you who were also stuck with useless doctors/medical staff. It is nice to know that I'm not alone in this, so thanks for your stories.