It's Fibromyalgia Not Mental Health - Fibromyalgia Acti...

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It's Fibromyalgia Not Mental Health

Fibroguy66 profile image
26 Replies

Really hate it when other people think that fibromyalgia is a mental health issue because you're giving antidepressants to deal with it.Trying to explain to people in a sensible way about fibromyalgia just falls on deaf ears or it's blah blah blah.

I really cannot understand it when other fibromyalgia pages state that the medical world cannot really put their finger on what causes it etc.

For me it was bought on by a serious lower spine injury which is in operable I'm sad to say.

I find personally that any kind of emotional trauma or stress or worry etc, really elevates body pain Or simply just over doing it by a hairs length will trigger it.

For those who have not experienced a flare up to date,well can you imagine non stop toothache pouring through your body for days or weeks or months.

It's not mental health it's a central nervous system illness/decease.

Not all disabilities are seen aren't they well I cry in pain & I have trouble walking to any distances.

Kindest Regards

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26 Replies
ChampagneDiamonds profile image
ChampagneDiamonds

Well said!!!!!!my neurologist wondered why I still had pain as I'm prescribed Fluxotine for (mental health),and my local GP,is now saying the excruciating pain I'm having is from past trauma,no 1 knows your body better than yourself!!!!to an extent and whilst a mind and body work in conjunction, I'm not sold on it at all!!!!!I'm also autistic and find it hard to condense,But pain is pain, not from general stresses of life,whilst it may hinder in healing, There is argument for the calmer side of life I agree,,,point to mention here...I had 1st covid and booster,I had blood clots after both injections,said I wasn't taking anymore...my brain n mind and body have most definitely aged 100%,.coincidence or not its my fact!!!and got fobbed off until a new doctor recently agreed with me??????Oh life used to be so uncomplicated, still is,, and with these invaluable forums,makes it easier not to fall into a differnt pit that I think they fob us off into.Moan of the day done lol,ChDs

Carlt profile image
Carlt in reply toChampagneDiamonds

Fluoxotine is prescribed for chronic pain as well as mental health though it is not thought to be as effective for pain management as other anti-depressants.

There is also evidence of a correllation between past trauma and fibromyalgia so a doctor would be remiss in not exploring all possibilities and all avenues of treatment.

johnworf profile image
johnworf in reply toChampagneDiamonds

hi,

my son who is trans and autistic has just been diagnosed with this - he is in constant pain...i just thought i'd connect.

AllthatGlitters profile image
AllthatGlitters

Yes people have no idea how it feels unless they experience it, I stopped telling people a long time ago how I feel as they don’t understand it anyway (apart from my family). It can be life changing and also life limiting.

I surround myself with people who don’t cause me stress or upset, it’s good for mental health and my wellbeing.

I hope today has been a good day for you x

Jasmeet12 profile image
Jasmeet12

Yes, definitely. People just dont know about it, and then when they do they have this blank look on theirs face. Trying to describe the type of pain it is, I really find hard to do. The medical workd are at loss about it and I agree it is stress related too, any form of stress in ones life makes it worse.

Carlt profile image
Carlt

I really hate it when people who should know better describe mental health issues as "being fobbed off".

I am perfectly happy to explore the possibility that my fibromyaligia could be a mental health issue and have happily been referred to counsellors and psychologists to see if there is any treatment in that area of medicine that might work.

People who dismiss mental health issues are no better than the people who dismiss fibromyalgia.

RufyRhubarb profile image
RufyRhubarb in reply toCarlt

Hi,thanks for saying this!!I totally agree with you.Also I really think that many many ailments etc,including fibro, are actually caused by a combination of physical and psychological factors not purely one of the other and so I think it is important that both are thoroughly.I actually felt that the writer of the original post was ,may be inadvertently,dismissing/disrespecting mental health sufferers in a way.

ChampagneDiamonds profile image
ChampagneDiamonds in reply toCarlt

Hi there,I am wondering if I am the writer of original post of being "fobbed off"...I'm terribly sorry if I offended anyone with MH issues,I too suffer extreme MH issues and have little contact with people and no family.I have had these issues since early age and still do!! I'm the last person in this universe to offend anyone else who does. I have re read MY post,by being fobbed off I simply meant by having blood clots after covid jags, that the doctors fobbed me off, by saying i didnt know what i was talking about!!!!sorry if my communication got lost in what I was trying to write,I'm autistic,sometimes my brain and writing longish txts may come out wrong,i will in future keep separate topics separate ,simple and short, so no confusion or upset is caused. On this note,although I couldn't wrap my head around the pain via stress ,the more I speak with this forum the more I understand the link.Hope this is finds all well,

Dinkie profile image
Dinkie

Fibro - the condition that just keeps on giving. My boss, bless him, thinks fibro is just being a bit stiff getting out of the car. Lovely chap but just can't get his head around it because I look ok. Yep - may look ok but my body is silently screaming pain, pain, pain.

It's difficult for people not affected by invisible illnesses to comprehend our struggles, and why should they understand it, did we appreciate the existence of invisible illnesses before we were afflicted, probably not. How can we educate them without them switching off? Have a look at "fibromyalgia letter to the well" if you can get friends and family to read it, it may give them a little insight into our lives with fibro. Also the spoon theory is quite useful for explaining what it's like for us. Folk need to be more tolerant of their fellow man in all areas but I guess that isn't going to happen overnight or at all.

I have a blue badge(granted for several conditions) and the number of times people have stopped me in the carpark and said "you don't look disabled" I used to get offended but now just sigh and say "and you don't look ill informed so I guess we are both wrong"

All we can do is soldier on and educate those who ask or want to help.

Fibroguy66 profile image
Fibroguy66 in reply toDinkie

Sure ignorance springs to mind.I get the same response myself quite often.

It's the society we live in unfortunately.

I've seen people trip over in the street,some citizens will assist while others walk by.

I think more people should listen or educate themselves to appreciate others needs.

I hate that old saying being the ways of the many out weigh the ways of the few.

I bet if they were ill they would realise this invisible pain syndrome.

Fibromyalgia is real & I definitely know the vile pain it causes.

How does one educate another,you could print out a basic simple document stating about fibromyalgia but something simple with no long words 😂

Words can not express the pain I live with & this is being perfectly honest.

More should be done for fibromyalgia research most definitely & importantly.

I tried all the NHS & private sector sweets I mean tablets.

Personally all we can do is move forward & pray 🙏 for a medical advancement.

PPSS1122 profile image
PPSS1122 in reply toDinkie

hi Dinkie, I could do with knowing where to find this letter to the well and also about the spoon theory. I have most of the symptoms of FM and have had for years but the worst offender of switching off is my GP. He finally referred me to an MSK about 6 mths ago and she said I appeared to have FM and recommended the GP put me on a certain medication, Brain fog, can’t remember what it was. Fast forward back to follow up GP appointment when I asked him do I have FM, he would not commit and was very blase saying FM is just pain non-descript pain from a non-descript area and refused to put me on the medication, saying I should start in 15 ml of codeine. I’m just starting to give up bothering him, as that’s all I feel like, than I’m moaning. I’ve recently had another fall and fractured my ankle and was referred to another MSK within his clinic for follow up. When I mentioned FM he said he could see the previous notes and asked what was being done about it, I told him I didn’t think my GP believed in FM. Not a word was said and they wonder why people with FM can have depression when even some of the medical profession don’t believe you.

Dinkie profile image
Dinkie in reply toPPSS1122

Just google fibro letter to the well and it will pop up. Likewise with the spoon theory.

If your GP refuses to refer you for a diagnosis then put a request for a referral to a rheumatologist in writing. Follow it up with a telephone consult a week later. This usually gets the required results as the request will have to form part of your notes. If done verbally it is easy for the GP to miss it off your notes as part of a "general" chat. Worked like magic for me after 2 years of requesting a referral to Guys and St Thomas's fibro clinic. Good luck

PPSS1122 profile image
PPSS1122 in reply toDinkie

Thanks so much for the advice, it’s appreciated, I’ll definitely check it out and ask the question. I’ve actually been a member on here for 11 months now and joined out of pure frustration with treatment from health professionals at the time. When I think of all the pain since then, all because some GPs don’t want to accept that FM is real.

PPSS1122 profile image
PPSS1122 in reply toDinkie

Hi Dinkie, I’ve just read the letter to the well, I haven’t cried like that in a long time, it is so sad to read and so honest.

E8L8dh profile image
E8L8dh in reply toPPSS1122

The Spoon Theory written by Christine Miserandino who suffers from Lupus can be found on Google but there is also a spoken version on You Tube. Hope this helps

PPSS1122 profile image
PPSS1122 in reply toE8L8dh

Thanks, it does and just knowing that others can relate to how I’m feeling and what I’m going through, gives some confirmation that it’s not all in my head.

Carlt profile image
Carlt in reply toE8L8dh

I prefer this version...

There is no spoon
RGriff profile image
RGriff

I completely understand how you feel.... Fibromyalgia is classed as a chronic illness, and it is, the amount of symptoms we experience is horrible...It actually drives me mad too! My mum is a mental health nurse and she always said to me all my life don't take drugs, don't take antidepressants, my doctors tried for years to give me antidepressants but I always said no, but yet my doctor has me prescribed on them since April in 2022. In April 2022, I woke up paralyzed with my speech gone and also, l hallucinating, I thought it was a stroke but scans were clear, how this happened and why, I don't know. I've had fibromyalgia since the age of 16, I've never had any injury to my body, i experienced a loving upbringing but it was hard with my fathers alcohol abuse (my parents are sperated for over 10years and my father doesn't drink anymore after liver disease ,but my dad and mum are like best friends now, wish I love) I left home when I was 14, looking back I wish I could have stayed with my mum and wish I looked after her more, and my 5 siblings ,I'm 3rd oldest, but these things happen. In the last year my father was diagnosed with cancer, my mother's has bad pneumonia,and my youngest brother was diagnosed with MS. My brother below he has autism and I just find the last few years is like a build up of **** that's happening in life. I'm trying to be positive but it is hard. It's a hard life and I do find the older we get the more people we know,and if your like me your a worrier and a people pleaser and a kind hearted person. Sorry for the long message, wish you the best of luck and a healthy life Here for you if you ever want to talk.

Rose x

PPSS1122 profile image
PPSS1122 in reply toRGriff

Hi Rose, thank you for taking the time to reply to my post, apologies it has taken me so long to reply to you. I tend to come one here, then go away feeling I should be grateful for how I am, a lot of people have it a lot worse. I’m sorry to hear you’ve had such a tough time of it, I too have lost a lot of family members and I am taking antidepressants, something I never thought I would do. I just find it exhausting and frustrating going to the Drs, just to be dismissed with no real support. You take care, Rose was my sisters name too and she was the kindest, most compassionate person you could ever meet xx

RGriff profile image
RGriff in reply toPPSS1122

No problem ☺️ it can be very frustrating , I always try and think there is people a lot worse then me, but when you have a bad day you just feel worthless, sorry to hear your going through a tough time too, it can be very hard sometimes but we'll be ok... oh really, bless her, she must have been a lovely person x

Debsdelight72 profile image
Debsdelight72

I have suffered from mental health issues since when I was a teenager,

My mental health is because I'm constantly in pain and have no life at this time and a few people have said I'm just saying I'm ill so I can stay indoors or bed, These people are no longer in my life, It's so much harder to act like I'm well,

Fibroguy66 profile image
Fibroguy66 in reply toDebsdelight72

Really hearing you on this one debs.Really can connect with all your saying.

Some people are so narrow minded & thick it's unbelievable etc.

Pain does drive you to the edge indeed

E8L8dh profile image
E8L8dh in reply toDebsdelight72

Hi Debs

Unless someone actually experiences serious mental health difficulties they do not understand. People think because they are having a bad day and announce they are depressed they can undo it by cheering themselves up with a drink, bar of chocolate or doing something they like to do. Unless they actually experience it for themselves it’s just words. But unfortunately the only person who can help is you. If you are on the Internet try reading The Spoon Theory by Christine Miserandino. It may not appeal to you but it might make you think maybe I can get out of bed today and do something which might use 1 or 2 of the allotted spoons. You might decide not today but I could try again tomorrow. It’s your choice. You have nothing to prove to anyone, you do it at your own pace. A lot of people don’t realise pain does make you depressed but depression makes the pain worse. It’s a vicious circle. Speaking from personal experience. Love and Light xx

Debsdelight72 profile image
Debsdelight72 in reply toE8L8dh

Thank you for your post E8L8dh, The one that used to really get on my nerves is the "cheer up, It might never happen,"?

Just because I don't have a stupid grin on my face??? GGrrrrrrrrr,

I'm just glad more is known about depression and anxiety these days,

Take care Debs

Bacaloca profile image
Bacaloca

Please be careful how you word things calling people thick is not a very nice way of describing someone. 🫣

Fatball profile image
Fatball

Thank you. Yes we are there with you and the pains are horrific! Friends and family don't understand at all even though they say they do. Only people with fibro understand. So rant away. We will all agree with you. One thing though, I think my antidepressant tablets do help because this condition, does make you so depressed. Keep ranting

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