Fibromyalgia

[MrsDylanBlue]

A lot of my FB friends have this and a lot of families I work with.

Is it a new (ish) illness and if not what was it beforehand.

Do we know what causes it.

TIA

@Yarnswift I would say it depends pretty much on who does the diagnosis and how seriously they take the patient.
I had to go through two specialists, all sorts of examinations, repeat examinations, blood tests, a good research of my medical history to have this confirmed. I was prodded, poked at, had shitloads of blood taken for various blood tests etc. etc. It definitely wasn't a visit to the GP and that's it. I'm an old pro at lots of exams including the MRI etc. but this was even too much for me.

A friend of mine was diagnosed with fibromyalgia a couple of years ago and is now trying for a baby. I’m quite worried about the effect it will have on her body as she really struggles with fibromyalgia. Any experiences anyone can share?

There's no way I'd even contemplate having a baby with fibro. It's hard work as it is.

Saying that though, people suffer to different degrees. If she's thinking about it, she must be pretty mild, surely?

I definitely wouldnt have had children if I had been ill, luckily I got ill once they were growing up. Still not easy but no way I would want them if I had fibro when young.

@ICantCopeAnymore

I wouldn’t say it’s mild, no.

I have no one else to compare her with to be fair but she’s had lots of reasonable adjustments made for her in work including disabled parking space, can work from home no questions asked etc. She really feels like the pain gets her down. She is desperate to have a child though. Is there any practical advice that anyone can offer?

Sorry then, my advice would be don't do it. My body is wracked with pain enough, I absolutely can't imagine putting it through a pregnancy, let alone looking after a newborn.

Oh dear I wasn’t hoping you wouldn’t say that.

I don’t want to tell her to avoid kids because I’m not qualified in any way to say that but it does seem like a huge strain

No, it's a big decision but it would be bloody hard. I know I couldn't do it now. Would she have support on the days where she flares up and can't lift her head, let alone get out of bed, change nappies, prepare baby food, lift the baby, fold a buggy, deal with sleepless nights etc?

Mine came on during my 3rd pregnancy.
It was incredibly difficult looking after a baby with it.

I would not really want to hear advice from someone who didn't suffer from it themselves though.

Mabye she would think about joining a RL or online support group and asking on there.
Mumsnet has quite a lot of MNers with fibro too

My rheumatologist has unofficially diagnosed me with fibro but I don't have the intense pain above my elbow on touching, at all

I have joint and muscular pain, mostly in my shoulders at the minute, sometimes in wrists and hips. When it's bad it will wake me up at night, and I'll put off washing my hair for longer than is civilised because it hurts too much to reach up. I seem very fortunate compared to others on this thread because it's not constantly there no matter what - it comes and goes as I go about normal everyday life. For example, I can go to take my coat off as I get on the tube and the completely normal action of my arms will give me sudden pain so sharp and intense I'll feel sick and for a few minutes wonder if something really bad has happened to the joint or ligament or something. But it passes, thank fuck.

It's what I imagine being stretched on the rack was like, when they had racked you far enough that your ligaments were damaged beyond repair. Obviously, I have never actually been on the rack though so what do I know

Chronic pain is fucking miserable, makes me tense and unhappy at times when I can't seem to find any relief from it. Fatigue is probably a bigger problem for me in terms of the everyday, however. They do feed off one another though - after a few gruelling days I'll be really exhausted, and unrefreshed after sleeping. Then being tired makes me more sensitive to pain.

I have fibromyalgia. Fibromyalgia has me.

I'm 40, it started with severe pain down my leg when I was 27 which was diagnosed with sciatica, the pain started on the other leg and pretty much everywhere else, I have been dependent on pain medication for 13 years.

4 years ago I had a traumatic life event and that's what I think triggered this severe part. Stress and anxiety definitely plays a huge part in my condition and I also have OCD ( diagnosed ) which complicates things further.

Fibromyalgia to me is this-

Waking up from sleep feeling worse than before.
Severe insomnia at times.
Feeling like a zombie.
Forgetting the simplest things.
Being extremely scatty.
Walking like I'm a 90 yr old when bad.
Morning stiffness, doing school run is hard.
Not being able to keep down a job.
Pain like no other. Constant pain.

Flare ups take some getting used to, I've just come out of one and I thought I was dying. My lovely home has gone to the dogs, I've always been so houseproud and clean and that's how I know I've been bad if it takes me all day to manage one task.

Tablets, clock watching, I hate this part.
Being addicted and totally dependent on pills.
My life revolving around fibromyalgia, it limits me, I can't go on nights out like I used to, I'm too tired. I will pay for it for days.

I can't remember not having pain. Would love to feel "normal"

What upsets me most is people in my immediate family thinking I'm lazy or making it up. The same people who have complained that I never used to sit still. Make your mind up!

I've lost all interest in Television, I have little concentration and need a purpose in life.

This is the reality of fibromyalgia.

Love to all others suffering, I get you

I have ME/CFS but was diagnosed privately as the NHS tests in the end were too much and I walked away after having an MRI, EEG, sleep apnoea tests and several hospital appointments, which made me more and more ill due to the added exertion. I have seen specialists at the hospital for my chronic pain and one professor categorically said I don’t have fibromyalgia as well, the other one said I definitely do. Only the first was able to diagnose despite the second being a physiotherapist professor.

Idk if there is a relationship to MS. However, about 100years ago it was called “fakers disease” as it wasn’t believed, a bit like us now.

My brother has both threatened me with violence and been violent with me because of my illness. He has screamed at me that I’m not disabled. My sil has shouted at me because my back pain isn’t that bad, called me ungrateful for organising long walks that I got very ill on - walks I wouldn’t be able to do now at all btw. Both left me at the side of the road, collapsed with my dd, who was then 7 bawling her eyes out while dh went to fetch the car to collect me. They wanted to go and get a drink at the pub and they were upset with me for inconveniencing the plan. My mother has only recently believed me as I posted her a copy of the bloody diagnosis and before that was absolutely vile. This is just a snapshot of their behaviour, which would take pages to detail.

I now need a hysterectomy and my humongous uterus is making me even more ill. I have trouble with remembering words, even my name / dhs /dds sometimes. I’m now getting aphasia. This is where I know what I want to say in my head but am unable to say the words. So I’m trying to get the word out, mouthing it or stuttering or sitting with a pained look.

I also understand it is a mitochondrial issue. I had CBD for a while but got it from a dr and it was prohibitively expensive as it’s not yet licensed and this is the one, which hopefully will be one day so it’s a sort of paid trial. Once I’ve had the hysterectomy, I’m going to try to take CBD from a different source.

@Bodicea
Or anyone else for that matter, who can tell me their experience of collapsing. You talked about the 2 women competitive collapsing. Please tell me about what it looks like. I collapse but haven’t met anyone else, who does but I only know people, who are either not as ill as me or have recovered but were never as ill. For me, I’m standing or even sitting, sometimes lying down. I have to collapse to the ground otherwise I would fall over. I become unable to move or speak. Salt revives me btw.

FELLOW SUFFERS: SORRY TO SHOUT, PLEASE TRY LOTS OF SALT. I swallow 3 sachets of salt (cafe/McDonald’s) with some water and this revives me after collapse.

I had twins when I was diagnosed with endometriosis and ME, since they were born I’ve been diagnosed with fibro too. It really depends on her situation - does she have family to help? What will she do on really bad days where she can’t move? My DH works from home and that’s the only way I can manage.

@quackbaconporridge

Fintress My balance is awful so I walk into doorways or stair gates a lot. Every single time I do it feels like someone has punched a really sore bruise. Even my partner playfully smacking my arse at times through clothing can sting so much I’ve had to ask him to stop. He doesn’t do it hard and it was our thing. I still smack his though lol

I have the balance issue at times but I put that down to pernicious anaemia. I wandered around like a drunk half the time before that was diagnosed! I totally hear you on the stinging. Sometimes if my husband squeezes me tight I feel as if my bones are breaking. I just put everything down to my existing conditions, which possibly in my case it's just that. I've had a really great spell until recently but now have unexplained foot pain which is a major pain in the arse.

Mummyoflittledragon - I feel sure I've suggested PoTS to you before, but if not, look it up - POTS UK - the collapsing and salt helping made me think of it.

jeangenie
It depends how bad her fibro is. Pregnancy could make it a lot worse. It’s so individual. No one can tell you. I had to stop at 1 child. No way could I have gone through pregnancy a second time and been in any shape to remotely look after my dd. I wasn’t ill until I started ivf. I then was ok, not right but when dd was 3, it got really bad.

@jeangeniebiglippedmeanie

I’m sure she has already been robbed of many of life’s pleasures due to her condition. I don’t think she should also miss out on the chance of happiness with a family. Very easy for people who already have children to say ‘don’t do it’.

Instead it would be more helpful to be supportive and help her make plans to manage when the baby arrives. Does she have good support from friends and family? An understanding partner? Has she discussed it with her specialist?

Myvisions
Thanks. I know someone has said to me before - perhaps you. I refer you to my ability to recall names. . I’ve done the poor man’s tilt test and my hr doesn’t go up enough. I’m not convinced that I don’t have it though. I’m going get my dh to repeat this weekend as I’m worse than when I last did it.

i had 3 children without pain relief, one where my pelvis was broken in the process. i nearly died because i my 'cough' turned out to be double pneumonia. prior to fibro, i worked 14 hour days in a professional capacity. i had no mental health issues.
so, no i'm not a negative, easily upset person. nor do i have mental distress.

Pregnancy put my fibro into remission for a while it was a very positive experience

Pregnancy put my fibro into remission for a while it was a very positive experience

Now that IS interesting. Because much like some RA type conditions some women find pregnancy helps hugely and others find it worsens things. After my first was born I had weird rheumatic symptoms - very strange and very unpleasant. Thankfully it resolved a year or so on. I think pregnancy can really do a number on you.

There needs to be so much more work done on this. A friend of mine has CFS - she went from being super fit and outdoorsy to being bedbound. No mental health issues, she was a very grounded sensible nurse and it was awful to watch her be so ill.

Makes we want to get back into academia - I suspect that with a decent research program you’d find out that what’s all lumped together now as fibro is in fact a number of conditions, and I bet some are pretty treatable.

@BackToTheFuschia7

Yeah she’s married and has a great relationship with her in laws (her own Mum has loads of grand kids already where as this would be a first on her husband’s side)

@SuperLoudPoppingAction there’s not a chance in hell I’d give her advice, not being a sufferer myself. I just want to make sure that, if she does fall pregnant, I can help and perhaps know (or even preempt) how she might feel.

I have ME, thankfully not fibromyalgia or much pain (just headaches and migraines and easily ache from little exertion).

It's interesting, and frustrating, reading the mental health comments above. I have a long history of metal health problems and was suffering from a lot of stress and undiagnosed OCD when I got ill. But I've worked really hard to make my life as stress free and relaxed and happy as possible now. I take antidepressants, I've had CBT for the OCD, I've a loving DP, gentle understanding friends and new hobbies of knitting, crochet and sewing. I can sleep as much as I need to and get daily fresh air on my mobility scooter.
Am I recovered? NO
Can I work? NO
Can I walk more than a few metres? NO
Can I read books without it screwing up my eyes and head? NO
Can I do a million other things that I used to do/enjoy? NO
Mental health may have weakened my body to allow the virus and then ME to take hold, but 5 years on its certainly not what's sustaining it.

I was diagnosed 9 years ago. But it's not a condition I would wish on anyone.

I had symptoms for years before being diagnosed.

jeangeniebiglippedmeanie I’m probably going to be diagnosed soon. Seeing physio in June and if that won’t help then they think it’s fibro. I’m trying for a third. I’m terrified of the pain I could be in and I got a lot of pain before anyway. I have a supportive partner and neither of us work as we are carers so that will help. Has she got plenty of support? I would never tell someone not to have a baby especially as I already have two and still would like another, just help her be aware of how difficult it could be and plenty of bed rest in the later stages I reckon. Will she be on her own a lot?