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I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
OhioOhioOhio · 10/03/2019 21:07

What is it

Threeminis · 10/03/2019 23:33

How is it diagnosed?

brightonbeautifull · 11/03/2019 07:27

They’re not sure what causes it but it is a lot of different symptoms such as chronic pain, migraines, insomnia, depression, anxiety, IBS, restless legs, nausea... just to name a few. It can be completely debilitating some days.

It is diagnosed by a rheumatologist and is usually by elimination of other illnesses.

OP posts:
killpop · 11/03/2019 07:29

What tests and examinations did you have to rule out all other possible causes for your symptoms?

MegaBat · 11/03/2019 07:33

Why do you think is it only women who suffer from this condition? I have my own private thoughts on it but my question to you is what makes you think it's not your thyroid or something related to female hormones?

brightonbeautifull · 11/03/2019 07:37

I only needed blood tests and they were all normal. I have 10 out of 12 of the tender points and most of the other symptoms connected with fibromyalgia.

I am not sure why it’s mostly women, it’s probably something to do with how our brain works. I’d be interested to know your thoughts?

I went through a lot of trauma in my younger years and I believe that contributed to how my pain receptors work. But again that’s just a guess! There definitely needs to be more research.

OP posts:
brightonbeautifull · 11/03/2019 07:39

Symptoms and possible causes

I have Fibromyalgia AMA
I have Fibromyalgia AMA
OP posts:
motherofdxughters · 11/03/2019 07:41

Are you able to work with your symptoms? If so, when you have to take time off for rest, how are your employers with it?

brightonbeautifull · 11/03/2019 07:44

I am working part time at the moment but it is becoming a struggle. I put my energy into work and then on my days off I’m laid up all day resting. My husband and I are considering me stopping work so I can love life a bit more. Workplaces are not very understanding as there is not much information on fibro, it’s very frustrating!

OP posts:
Wolfiefan · 11/03/2019 07:45

I’ve been recently diagnosed. What helps? I’m on medication. Any other things that can help?

killpop · 11/03/2019 07:49

Blood tests only? Are you at all concerned that you haven't been properly investigated for something that could potentially be treated?

KindleAndCake · 11/03/2019 07:52

megabat men do get fibromyalgia, it's more common in women though.

Mysteriousbee · 11/03/2019 07:54

I was misdiagnosed with fibromyalgia for years . Turned out I have Ehlers Danlos Syndrome Type 2 I only got the right diagnosis when DD was diagnosed with EDS in her 20s. I saw her consultant rheumatologist at the National Orthopaedic Hospital after she diagnosed DD and that’s when things started to make sense.

I have all the symptoms of fibromyalgia but lots of other things that were never linked up. I worry about fibromyalgia diagnosis now as having clear blood tests, fatigue, headaches, tender points could nave other causes. I was told by the consultant who diagnosed me that many people are told they have fibromyalgia when they don’t. Do you feel enough was done to exclude other causes before you got your diagnosis?

MegaBat · 11/03/2019 07:56

But where are all the men with it? I only see women on my Facebook feed and on here talking about 'spoons' and posting memes. So it's no wonder that as an illness, it's not taken seriously

brightonbeautifull · 11/03/2019 07:57

Yoga, sports massages and rest are the only things that work for me. The medication numbs things but no medication so far has helped my insomnia.

Not at all worried killpop, I trust the specialist that there is no other explanation. I did also have an MRI with regards to my migraines but that was a year or so before I was even diagnosed and nothing worrying showed up. The lady I see really is amazing, I have every faith in her. If I’m honest I thought I had it a long time before I was diagnosed, two of my cousins suffer with the same illness.

Yes that’s true kindleandcake, it’s much more common in women.

OP posts:
brightonbeautifull · 11/03/2019 07:59

I do have faith that this is what I have, I can understand a lot of drs using fibro as a label for people where they can’t work out what’s wrong but my cousins and I are so similar (even though it’s said not to be genetic). I don’t question that I have fibro, but who knows one day they might find something else but at present I am certain.

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brightonbeautifull · 11/03/2019 08:01

Why is that Megabat? You feel it’s not taken seriously because there are less men with it? There are lots of illnesses that affect one sex more than the other. The spoons method is very handy for us to be able to measure our energy levels. People post to improve understanding but people don’t take the time to actually try to.

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Tinyteatime · 11/03/2019 08:07

Is there a difference between fibromyalgia and chronic fatigue and M.E? It all seems they have quite vague lists of symptoms that seem similar?

I have a friend whose been Diagnosed with it. She gets terrible swelling in her forearms and pain, other symptoms too. I do worry that as a young woman other things might not have been investigated fully because they’d be unlikely in our age group perhaps? It’s easier for the doctor to push her out the door with some antidepressants.

brightonbeautifull · 11/03/2019 08:09

Yes you can have CFS/ME on top of Fibromyalgia as well as things like lupus and Epstein-Barr.

If she is being pushed out of the door with anti-depressants I would advise her to request to see a rheumatologist as they can refer her to pain management clinics and are specialists at diagnosing fibro.

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MegaBat · 11/03/2019 08:12

I feel it's not being taken seriously because of all the memes and spoons, yes.

brightonbeautifull · 11/03/2019 08:12

Also to have fibromyalgia you have to have the majority of the symptoms listed not just a couple.

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brightonbeautifull · 11/03/2019 08:14

That’s to raise awareness Megabat, maybe try to do some research before judging. It is taken seriously by people who know someone who is suffering. Showing the spoons method is helpful to show people why we don’t have the energy to do things some days and to explain how we reserve our energy. To not take someone’s suffering seriously isnt very nice in my opinion. People with the condition are anxious about being judged and share memes etc to try to encourage understanding.

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brightonbeautifull · 11/03/2019 08:16

Would you feel the same if it was for a condition that’s more well known and understood?

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Decormad38 · 11/03/2019 08:19

I have two sister in laws with it they both compete to see who can get through their assessments, who has the worst symptoms, the best place to holiday abroad with this condition and who has the best car on disability. They have made me somewhat cynical towards this condition. Do you compete with your Facebook friends who also have this condition?

MegaBat · 11/03/2019 08:19

But it isn't used for any other illness is it? No illness I can think of is measured in spoons and memes.

So I feel it's misdiagnosed.

Ps this is AMA. Not 'ask me stuff I won't take umbrage at'

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