Page 5 | Fibromyalgia - be honest.

Hellovation · 2025-03-19T21:16:21+00:00

I think I’m going to be diagnosed with fibromyalgia. I had never heard of it, until the neurologist and GP both mentioned it. Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss. I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad. Be absolutely honest- what do you think of fibromyalgia?

Utterlyexhausted · 19/03/2025 22:40

I was diagnosed with hEDS but thought I had fibromyalgia for years. The geneticist who diagnosed me said he believes most people diagnosed with fibromyalgia actually have hEDS or hypermobility spectrum disorder. Some things to consider, OP.

Whateverfloatsyourgoat · 19/03/2025 22:40

A doctor randomly diagnosed we with it when I was about 18 because I had some pain that couldn’t be explained. It was before widespread internet use so I never knew much about it…and then forgot about it….suffice to say at 50 I don’t have a chronic illness. Am pretty sure it’s a made up illness. Not to say some people diagnosed with it aren’t suffering from something but….yeah, it’s a cop out

Sunshineandclearskies · 19/03/2025 22:41

OldCottageGreenhouse · 19/03/2025 22:35

& @MrTiddlesTheCatYou are both incorrect! Fibromyalgia has now been proven to be a neurological disorder and they are trying to have it renamed as FND

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Do you have any links for this ?

Charcadet · 19/03/2025 22:41

Which bit is bollocks @OldCottageGreenhouse? It is diagnosed by GPs all the time. I also haven't said anywhere that it isn't real but that I would only accept a diagnosis once all other has been ruled out. Many GP do offer it as a solution before even a referral to a consultant or other avenues being explored. There is no misinformation in my post. HTH

JanglingJack · 19/03/2025 22:42

myplace · 19/03/2025 22:26

Low doses of amitriptyline or nortryptiline, like for shingles pain and other neurological pain.

I find it settles everything down, takes the edge of a heightened reactivity.

My irritable bowel has settled, my over sensitive hearing and smell has settled, I can go out without sunglasses.

Don’t accept it as a sentence of lifelong disability. Keep working on lifestyle management and health. I’m still limited but am a different woman to who I was at the point of diagnosis.

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Thank you. Amitripyline was suggested for me, but what we (I) did was get weaned off venlafaxine - horrible stuff, on to Duloxetine, it's easier going cousin.
So, everything hurts.

I can't imagine and I can't really see people making it up. I used to care for a lady with fibro - when I could work. She'd call herself fibro mashed in the morning... She wouldn't use the stair lift she'd just take her meds and conk out on sofa.

There are so many misunderstood autoimmune conditions. My son always suffered terribly with psoriasis... Bloody hell, lotions, potions blah blah.
It covered his entire body and a medical emergency was called and they said he was at risk of death because he, we (he was early 20s then) knew creams were nothing. None of his skin was visible, he couldn't regulate his own body temperature because he couldn't sweat... They scanned the country to get him with the first specialist dermatologist available.
He was given drugs that cancer patients take to attack his immune system that was attacking him. Within weeks... Clear skin
I don't know what I'm on about now, but... The immune system or not, has a lot to answer. Mine was fucked by being given omeprazole from a young age... Gut health is actually a thing. If it's ruined, easily done with these meds then you are not absorbing vitamins etc especially b12 and folic acid.

My apologies... On and on and on 😂 Thank you for replying though.

Snapplepie · 19/03/2025 22:42

JanglingJack · 19/03/2025 22:27

I have autoimmune conditions and shocking mental health from a child. I'm interested in it. I'm also interested in Gabapentin as I take 900mg a day and am unsure really what it does, because sometimes I'm not in pain. But pins and needles constantly is bloody annoying, however my feet have no feeling....

I can feel like someone has shoved a red hot sewing needle under my toenails or I can stand barefoot on a pavement that is literally burning me and not feel a thing...

When a nerve is damaged in your body, it makes that nerve and those close to it more sensitive. Gabapentin settles this very specific type of sensitivity down a bit and so can take the edge off neuropathic pain (nerve pain). This isn't really the mechanism of pain in fibromyalgia so gabapentin is no longer recommended in the UK (although you mention other conditions that it may be indicated for). It is still used quite widely for fibromyalgia in the US so there may be international mumsnetters using it.

In my experience, for fibromyalgia gabapentin is a bit of a problem. It has a weak(ish) anti-anxiety effect and this can make people initially feel a bit better generally so once they start they are keen to continue. But it's not the most effective/lowest riskdrug for anxiety and it can be very difficult to come off it once you start.

OldCottageGreenhouse · 19/03/2025 22:43

Catpuss66 · 19/03/2025 22:36

I feel it’s a diagnosis that drs give middle age women & have to do nothing about it as there is not cure or treatment.until medicine starts listening to women about their pain nothing will change.

I Beg your ever loving pardon? I was diagnosed with fibromyalgia by Rheumatology at 18 years old! Fibromyalgia is NOT diagnosed by GPs ffs. It has also been PROVEN to be a neurological disorder. Get your facts right before spouting your ableist poison

Whateverfloatsyourgoat · 19/03/2025 22:43

To add, I also know two people who were diagnosed with CFS and were on disability, very affected etc. When changes in their life happened (new partner, lost a shit husband) both of them swiftly and completely recovered. I do think a lot of it is psychological. But that doesn’t make it not an illness

Mumsday · 19/03/2025 22:43

Sunshineandclearskies · 19/03/2025 21:50

I was diagnosed with Fibromyalgia about 6 years ago. It's a very frustrating diagnosis as they still don't really know what it is. I have varying degrees of symptoms. Wide spread pain like I'm bruised all over. Random stabbing pain. Tightening pain around the ribs like something has been tied tight under breasts. Burning skin, numbness, tingling, pins and needles, feeling like skin is crawling or water is dripping/running down body. But by far the most restrictive is the Chronic fatigue and poor balance. It feels like I'm constantly wearing a heavy suit of armour. As the day wears on I just sort of lose the ability to hold myself up, like a puppet who's had it's strings cut. My arms won't work and I can't even hold my phone up to my ear. I tried to keep working but had to give up my job as a carer 4 years ago and now I'm on disability.

I know there's a lot of ignorance and people don't believe it's real but I can't change that.

If you do get a diagnosis though, do yourself a massive favour and don't go on so called support groups. They have a tendency to encourage each other to stay unwell, it sort of becomes their identity, any talk about eating healthy or exercise is shot down and anyone saying they went into remission due to eating healthy or anything really are told they didn't have it in the first place. So it can be lonely but I'm not giving up.

Do your research, I've had some success eating plant based and completely raw.

Good luck

I think this is very good advice.

OldCottageGreenhouse · 19/03/2025 22:44

Charcadet · 19/03/2025 22:41

Which bit is bollocks @OldCottageGreenhouse? It is diagnosed by GPs all the time. I also haven't said anywhere that it isn't real but that I would only accept a diagnosis once all other has been ruled out. Many GP do offer it as a solution before even a referral to a consultant or other avenues being explored. There is no misinformation in my post. HTH

No it is not diagnosed by GPs stop spouting crap! It can ONLY be diagnosed by Rheumatologists 🙄

OldCottageGreenhouse · 19/03/2025 22:45

Whateverfloatsyourgoat · 19/03/2025 22:43

To add, I also know two people who were diagnosed with CFS and were on disability, very affected etc. When changes in their life happened (new partner, lost a shit husband) both of them swiftly and completely recovered. I do think a lot of it is psychological. But that doesn’t make it not an illness

Yet more nonsense. It is a neurological disorder. Ffs

Charcadet · 19/03/2025 22:45

It's not crap 😂 loads of GP will diagnose now. @OldCottageGreenhouse

Whateverfloatsyourgoat · 19/03/2025 22:45

Bathnet · 19/03/2025 21:42

My honest opinion is that it’s a diagnosis given to people whose poor mental health manifests itself in physical symptoms. I think it’s a predominantly psychosomatic condition. I wouldn’t ordinarily say this directly to someone but you seem to want honesty

I think you’ve hit the nail on the head

OldCottageGreenhouse · 19/03/2025 22:46

Sunshineandclearskies · 19/03/2025 22:41

Do you have any links for this ?

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There you go!

dizzydizzydizzy · 19/03/2025 22:47

I think I might be about to get a fibromyalgia diagnosis. I already have ME/CFS.

I take issue with PPs who are suggesting that it is not a proper diagnosis because it is a diagnosis of exclusion. All that means is that doctors have very little understanding of it because not enough research has been done - it doesn't mean that it might be psyschosomatic. ME/CFS is also a diagnosis of exclusion and people say much the same.

OldCottageGreenhouse · 19/03/2025 22:47

Charcadet · 19/03/2025 22:45

It's not crap 😂 loads of GP will diagnose now. @OldCottageGreenhouse

Not in the NHS they won’t. Do your research. I’m not arguing with you anymore.

Catpuss66 · 19/03/2025 22:47

PrettayGood · 19/03/2025 22:21

I echo this - it’s often mental health related.

I have a family member who says she has fibromyalgia, or ME.

Have you ever thought the fibro caused the MH problems? Her problem is having you as a family member.

Charcadet · 19/03/2025 22:48

Here's one LHA guidelines for GPs www.torbayandsouthdevon.nhs.uk/uploads/diagnosis-of-fibromyalgia-for-gps.pdf @OldCottageGreenhouse the NHS website also cites a GP diagnosis

Whateverfloatsyourgoat · 19/03/2025 22:49

Sunshineandclearskies · 19/03/2025 21:50

I was diagnosed with Fibromyalgia about 6 years ago. It's a very frustrating diagnosis as they still don't really know what it is. I have varying degrees of symptoms. Wide spread pain like I'm bruised all over. Random stabbing pain. Tightening pain around the ribs like something has been tied tight under breasts. Burning skin, numbness, tingling, pins and needles, feeling like skin is crawling or water is dripping/running down body. But by far the most restrictive is the Chronic fatigue and poor balance. It feels like I'm constantly wearing a heavy suit of armour. As the day wears on I just sort of lose the ability to hold myself up, like a puppet who's had it's strings cut. My arms won't work and I can't even hold my phone up to my ear. I tried to keep working but had to give up my job as a carer 4 years ago and now I'm on disability.

I know there's a lot of ignorance and people don't believe it's real but I can't change that.

If you do get a diagnosis though, do yourself a massive favour and don't go on so called support groups. They have a tendency to encourage each other to stay unwell, it sort of becomes their identity, any talk about eating healthy or exercise is shot down and anyone saying they went into remission due to eating healthy or anything really are told they didn't have it in the first place. So it can be lonely but I'm not giving up.

Do your research, I've had some success eating plant based and completely raw.

Good luck

Have you been tested for MS as these are classic symptoms. Especially the chest hug

OldCottageGreenhouse · 19/03/2025 22:49

Charcadet · 19/03/2025 22:48

Here's one LHA guidelines for GPs www.torbayandsouthdevon.nhs.uk/uploads/diagnosis-of-fibromyalgia-for-gps.pdf @OldCottageGreenhouse the NHS website also cites a GP diagnosis

You haven’t even read this have you?! The patient has to have been seen by rheumatologist first! Proves my point!!

Go away!

Charcadet · 19/03/2025 22:50

No thanks
Here's another https://rms.cornwall.nhs.uk/primary careeclinical referrallcriteria/rheumatology/fibromyalgia syndromee_fms

HÆLTHEPAIN · 19/03/2025 22:50

Whateverfloatsyourgoat · 19/03/2025 22:43

To add, I also know two people who were diagnosed with CFS and were on disability, very affected etc. When changes in their life happened (new partner, lost a shit husband) both of them swiftly and completely recovered. I do think a lot of it is psychological. But that doesn’t make it not an illness

Wow. I mean it’s hardly surprising people with these illnesses have mental health issues with attitudes like yours.

OldCottageGreenhouse · 19/03/2025 22:51

Bathnet · 19/03/2025 21:42

My honest opinion is that it’s a diagnosis given to people whose poor mental health manifests itself in physical symptoms. I think it’s a predominantly psychosomatic condition. I wouldn’t ordinarily say this directly to someone but you seem to want honesty

Oh really. How embarrassing for you

Fariella · 19/03/2025 22:51

Interesting. I was also diagnosed with Fibromyalgia. At the same time as I was diagnosed with Rheumatoid and Oesteo Arthritis. During the consultation I could not stand up or walk and was in a wheelchair. For me autoimmune related. Subsequently diagnosed with myeloma and oesteoporosis. Often feel very ill. Right now, swollen, painful and red hand. So, random pains and exhaustion all over the shop. Supposed to pace yourself difficult to train an alert mind. I am retired now so that helps with stress.

OldCottageGreenhouse · 19/03/2025 22:52

Charcadet · 19/03/2025 22:50

No thanks
Here's another https://rms.cornwall.nhs.uk/primary careeclinical referrallcriteria/rheumatology/fibromyalgia syndromee_fms

Yet again, backs up what I said! You’re not reading them clearly!

Stop throwing a tantrum and go away!

Fibromyalgia - be honest.

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