Fibromyalgia diagnosis

[MetforminTrumpsBeware]

Hi,

After a year of being in pain, extreme tiredness, stiff muscles/joints, vibrating sensation throughout my whole body and and terrible brain fog, I've finally had a diagnosis of fibromyalgia.

I'm only 29. I've put on loads of weight because I'm so exhausted to exercise, I have a 1 year old and I work full time in a demanding job.

Has anyone else been diagnosed and have found anything that helps?

Look into ehlers danlos syndrome. Connective tissue disease.

Yes I have had this for 10 years, I've found stress really makes this worse Xx

Please say you've had your thyroid checked... and more than once.

You have a 1 year old- I developed postpartum thyroiditis after both pregnancies. First time it took 18 months for thyroid to regulate, second time it stayed and I am now hypothyroid for life (and medicated accordingly).

I had all the symptoms you list. It affects 1 in 10 women who have babies.

If your thyroid has only been checked once, it could have coincidently been during the period when the levels were swinging between hyper/ hypo and therefore appeared normal... before they shot up or down again.

Fibromyalgia sufferer here. Diagnosed at 19, I'm now 28. 2dc age 4 and 2. Main problem for me is fatigue and pain.
It's been a long slog to this point but I've finally accepted my diagnosis and what is going to help me.
For me and I must stress this is only for me and isn't for everyone, the following helps:
Hot Baths/showers
Stress regulation
Daily mental health check ins
Keeping the conversation open with DH eg how I'm feeling that day.
The biggest one- giving up work. It's not for everyone and not everyone can afford it. I'm very very lucky that DH is very supportive and essentially my career. But I was coming home for a nap on my lunch break or sleeping in the car in the work car park... Not sustainable.
Finding hobbies I could enjoy make a huge difference eg reading and crochet. I used to garden and yoga but physically I'm struggling at the moment.
Learn to listen to your body, check in daily with yourself and regulate your daily activities. Use the spoon ideology. Each action of the day takes a spoon. Once your spoons are gone for the day, that's it, you must rest.
My kids have grown up with me like this and my 4 year old understands mummy is poorly and needs help sometimes. He's been known to fetch the snacks when I'm stuck on the sofa. He also puts our favourite film on if it's a bad day. As a result, he is so caring towards his peers.
I wish you all the best, this can be the start of understanding your body and help you manage your symptoms

In my experience of working in healthcare (pain focused) fibromyalgia is the diagnosis you get when doctors have failed to find the cause of your pain. I think it’s a bit of a cop out.
I was once diagnosed with fibromyalgia when my bad knee failed to respond to physiotherapy. I pushed for further investigations, which showed arthritis and an ACL tear amongst other things. Not fibromyalgia at all.
If I was as young as you I would push for more investigation. Fibromyalgia has no ‘cure’, it’s just a way of doctors telling you you’ll have to put up with a lifetime of pain.

Oh yes when I had my little one 4 years ago, I ended up with hyperthyroidism when she was 9 months old too... didn't make a difference to energy levels or general health once medicated 🙃

I also work in healthcare and I have seen the same. Patients being diagnosed as having fibromyalgia when tests/scans have been unable to find underlying cause of symptoms. It is unfortunately, as the PP says, a bit of a cop out.

And this is the problem those with the condition face. I'm so angry to see these posts. If those in healthcare think it's a 'cop out' then how on earth are we meant to be understood and heard as a patient.
Do your research. There is evidence to suggest fibromyalgia originates in the spinal cord, sending pain signals to the brain. I'm so frustrated to hear those in healthcare refering to it as you both have.
I have pain everyday. Everywhere. I have horrendous fatigue. I have weather sensitive migraines. I have restless leg syndrome. I've spent days in a wheelchair because of this debilitating condition. Yet people are still saying it's a cop out or in our heads. Educate yourselves for goodness sake. And for the love of god if you come across patients in your profession who suffer from this condition, show them more respect than you've eluded to here.

You have to manage your lifestyle to get the best recovery.

I was you, though older. I barely moved off the sofa everything hurt so much.

I needed to be really proactive in self care. Stopped evening meetings, stopped excitement and stress, focussed on healthy eating and getting gently active.

Don't push yourself. That's counter productive.

I'm at the point now where I can work and be out and about again. It takes time though and I have to stay aware of my limits.

PP did not appear to be saying it was a cop out on the part of the patient - or all their heads at all. They were saying it was a cop out on behalf of the health service who use it as a diagnosis when they don't know what else it could be.

In the case of my aunty that is also correct. For ten years she has suffered massively with pain and movement problems and was told about eight years back it was fibro. Now, as she has deteriorated to the point she is almost unable to walk at all, she was recently told it isn't fibro but it is a problem with her spine that needs surgery - and that surgery probably won't restore function because she should have had it several years ago when this first started.

All that wasted time and loss of function. All that pain. All looks like it could have been dealt with years ago if someone had kept investigating. It's heartbreaking.

I was diagnosed 4 years ago, but had symptoms for about 10 years before that. I manage my pain levels with medication, hot water bottles, gentle excersise and rest. My mobility has been severely impacted, and now have to use a wheelchair. Stress exacerbates this condition, so I try to limit it. Very little Sympathy, is shown for Fibro, by medical professionals, and people generally. Dr's try and blame every health condition on my Fibro in my experience, without investigating further, unless pushed to do so. Other people's reactions, even, some family members, with comments of 'you just need a good night's sleep' 😂, or the classic, 'but you look ok'. Attitudes to this condition really annoy me, if they lived a day in my life they would understand.

@justsayingthat did it regulate itself or with meds? I have had my thyroid checked twice, but it didn't come back with anything abnormal apparently?

@Eachpeachpears Thank you for sharing your experience. I feel bad for my daughter that she exhausts me and I worry for the future. Will I be able to keep up? Will I be able to do fun things with her?

I have done my research and I know it's a host of symptoms with no explanation. How do I push further if I don't know what I'm pushing for? I'm having a particularly bad day today. I don't even know why. This weekend was relaxing, I'm organised for the week, work hasn't been to stressful but I've been so tired all day. My whole body aches. WHY!!!!

The first time it went back to normal by itself.

The second time it never returned to normal levels (this can be common with postpartum thyroiditis, especially if you've had it more than once) and so now I have an underactive thyroid for life- I take thyroxine to manage this and keep my levels normal.

If you've had it checked twice and it's been normal, then I guess it's less likely to be a thyroid issue. It depends on what parameters have been used though. The NHS normal range is something like 0.4 to 4 for TSH, but I get symptoms with anything above 2.5. Do you know what your levels were?

I’m sorry if you misunderstood my post. I absolutely wasn’t suggesting that it was a cop out on your behalf. I worked in a pain management department for 15 years and watched desperate people in chronic pain being dismissed by the surgeons, doctors and physios who undertook limited investigations and then threw their hands up and said ‘we don’t know what it is so it must be fibromyalgia’. In cases where patients were able to afford private care and pushed for further investigation a cause was often found, and sometimes was treatable.
I found that the pain specialists often had a very cavalier approach, particularly to NHS patients, and just wrote them off. ‘It’s fibromyalgia, there’s nothing to be done, go on a pain management course and do some meditation’, leaving the patients to face a lifetime of pain.
My frustration was entirely with the specialists, and not with the patients. I’m very sorry that it was worded badly and upset you.
(I added in my own experience of being misdiagnosed with fibromyalgia because I thought it illustrated my point)

I was diagnosed with this once, exercise (gym programmme) and quitting full
time work was what had the bigggest impact on pain levels for me. I’ve since had a more recent diagnosis of autism and for me the fibro is/was a physical symptom of me being I autistic burn out. That’s my theory anyway, the physical pain is managed as above but also as all others have mentioned here pain killers, hot baths and verbally being aware of not over doing it. I can do things now that 6 years ago would have left me in agony and unable to walk such as a whole day shopping.

The curable app helps me. Worth a try for you perhaps

Yes, I was diagnosed many years ago. I see a pain mgmt specialist. I'm on pain killers and muscle relaxers. I've been to chiropractor and PT, as well. Do a lot of soaking in tub with epson salt.