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Fibromyalgia

(83 Posts)
Flipflop50 Fri 05-Jun-20 11:53:15

I have just been diagnosed with fibromyalgia. I don’t know the first thing about it apart from it’s doesn’t have a cure.

I have looked online but I just don’t understand it.

If anyone out there can give me some hope please comment. Dramatic but this is how I feel

OP’s posts: |
Wolfiefan Fri 05-Jun-20 11:56:50

What’s your symptoms like? It’s good you’ve got a diagnosis. That normally takes a while. What tests did they run? Some conditions can be labelled it by mistake I believe.

Laundrywoman Fri 05-Jun-20 11:59:33

Sorry you've going the fibre club, op.
I think most people inc doctors and sufferers don't understand it.

I've had it about 12 years now and the best advice I was ever given is to pace.
You'll have days when you think you feel ok, it's gone and go mad.
Big mistake.
Pottering is my new normal...do a bit then rest.

Flipflop50 Fri 05-Jun-20 12:01:41

I have been having tests for months. Chronic pain in joints sometimes to the extent I can’t walk. being knocked all the time with trouble sleep. Moods tummy problems....... I could go on

OP’s posts: |
MellowMelly Fri 05-Jun-20 12:04:33

My daughter has it. She has a genetic twist in her DNA which is causing it and has had it from birth. She’s now 17 and we manage her symptoms with various supplements.
She still has some bad days but she has more good days now we have have worked out what tablets help and how to balance her life accordingly.
There are a lot of differing components that can cause Fibromyalgia and a lot of people do suffer differently with varying/differing symptoms.
Maybe we can help if you would like to explain more about how it’s affecting you and what your symptoms are?

Wolfiefan Fri 05-Jun-20 12:05:20

Oh I was hit with an awful bout of the tum last night. Grim.
Pain is the worst for me. You on any medication?

Flipflop50 Fri 05-Jun-20 12:05:24

Hi Laundrywoman, thanks for the tip!
I have just had to give up work, can you work with this problem?

OP’s posts: |
Wolfiefan Fri 05-Jun-20 12:05:53

Mellow what do you mean genetic twist?

MasakaBuzz Fri 05-Jun-20 12:07:02

I have had it for years now. I have got it alongside rheumatoid and other joint problems.

Personally I was relieved with the diagnosis. It explained all the times bits of me are sore without any signs of inflammation, they dodgy bladder and the sleep disturbances. These symptoms are a pain in the rear end, but are not indicative of anything nasty.

It is about pacing yourself.

I overdid it spectacularly Monday - Wednesday this week. As a result I have felt like excrement for the last couple of days. I know I have to rest this weekend.

Basically it’s a load of weird and wonderful symptoms. Versus Arthritis has loads of leaflets about it.

Ask any questions and I will do my best to answer.

MellowMelly Fri 05-Jun-20 12:10:41

Sorry op, I was writing my response when you’ve all ready posted about your symptoms.
So my daughter has agonising joint pain on her bad days, mainly her hips which can make it difficult to walk, she suffers from abdominal migraines, fluctuating moods, hives, fibromyalgia brain fog, super sensitive skin etc...
It’s quite a concoction of symptoms!

Wolfiefan Fri 05-Jun-20 12:13:45

Hives? That’s interesting. I’ve been getting those too and blamed allergies. I’m fairly recently diagnosed and pretty clueless.

MellowMelly Fri 05-Jun-20 12:13:55

@Wolfiefan
So we had some tests run and she has a gene mutation. They called it a genetic twist, I guess it was the best way to explain it to us ( her father and I)

Wolfiefan Fri 05-Jun-20 12:18:51

Who did the tests Mellow? I’ve never heard of that. Interesting. Thanks for sharing.

ellabella18 Fri 05-Jun-20 12:19:05

Thank you for this thread, it's the first I've heard of fibromyalgia and am very interested to know more including how you went about getting a diagnosis.
For years I've had the symptoms you describe, most days I feel shattered, stiff unable to get up and ache all over, it's caused problems in my relationship as DH doesn't understand why I can't just get on with life in the way he does. I have found daily yoga temporarily relieves some pain but struggle a lot to the point where I ache so much I can no longer exercise. I also have frequent tummy problems that the doctor has put down to IBS.

I've worried about going to the doctor and being dismissed, they've already run tests for anemia and other vitamin deficiencies and found nothing but I just know I find life harder than I should.

ellabella18 Fri 05-Jun-20 12:20:11

Brain 'fog' is also a big problem for meconfused

MellowMelly Fri 05-Jun-20 12:22:12

@Wolfiefan
@Wolfiefan
Hives/angioedema are part of some people’s fibromyalgia.
It’s like an over reactive immune response. An allergen may or may not be present. My daughter suffers from stress hives, pressure hives and when she was little going from hot to cold (or visa versa) temperatures would make her digits/lips/eyes swell.

Wolfiefan Fri 05-Jun-20 12:24:32

I can’t exercise either. I used to do body combat and go to the gym. Some days stretching causes awful cramp and I can’t walk without a stick.
The diagnosis has almost been a relief. At least I know why! When pain flares knowing it’s “just” fibromyalgia weirdly helps me cope with it.
Wish I could find a magic pill though. My hands are the problem today. And I’ve sprained my wrist. Which has decided to swell and insist it’s broken. It can’t be. It’s being a drama queen. grin

TooSadToSay Fri 05-Jun-20 12:25:20

@MellowMelly would you feel comfortable sharing more details about the genetic testing. A family member has been diagnosed with fibro but have experienced symptoms from a young age and I have always wondered about a genetic issue.

Wolfiefan Fri 05-Jun-20 12:26:55

@MellowMelly I have never heard that! I’m on immunosuppressants due to awful eczema and then started with the hives too. No one ever mentioned a link. Not dermatologist and not GP.
I swear it’s like “stuck a name on it now off you trot” No interest in exploring the condition or finding really effective treatments.
Sorry. Rant over. Today is a bad day.
Bowen therapy helps me. When we aren’t in lockdown! And I’ve heard some people use CBD.

MellowMelly Fri 05-Jun-20 12:34:04

It’s Genova Diagnostics who helped us. They ran some really extensive tests, right down to my daughters gut health using stool samples.
Her tummy aches are caused by an unhealthy ratio of gut flora so she is on supplements to boost her friendly flora. The stool sample showed she’s also suffers from and over active histamine response in her tummy so is on high strength Fexofenadine (antihistamine) to calm that down.
She can’t eat out of plastic packaging or drink out of plastic water bottles as she doesn’t remove those toxins from her body.
He joint pain is caused by a problem absorbing B vitamins and folate...
The list goes on but those are some examples!

Honestly we have been on a long journey!

Binglebong Fri 05-Jun-20 12:38:07

My advice, apart from pacing, is to treat the symptoms as you can't treat the cause. so I have special insoles and pressure gloves that help with joints, I did physio for the same reason.multivits with iron and vit c help and I quickly notice if I don't take omega oils daily. I'm on amitriptyline and cipralex(?) which helps too but it is just trial and error.

None of that fixes things but it helps. Good luck.

BertiesLanding Fri 05-Jun-20 12:41:46

I was diagnosed about 19 years ago, and I've learned a few things on the way.

Keep moving: yoga, walking, stretching - or you end up in a spiral of immobility.

Don't over-do exercise: work up gently to avoid getting slapped down by your symptoms again.

Minimise stress: fibromyalgia sufferers tend to somatise stress and emotional pain, so it's worth managing these as effectively as possible.

Consider therapy, if relevant: our neural networks and brain chemistry are often profoundly affected by formative experiences. Children, for example, who aren't held - or who were subjected to changeable parenting - have nervous systems that are moulded by this, and often 'bunch up' from a very early age, and produce higher amounts of adrenaline and cortisol. These go hand in hand with fibro to the extent that I believe that there is a link there.

MellowMelly Fri 05-Jun-20 12:44:51

So the gene is MTHFR C677T.

I’m really hoping I am explaining this all okay.

It’s a gene variant and it’s commonly found in people with fibromyalgia. It’s just the NHS can’t afford to run this sort of extensive testing and the other tests required that actually would truly help people suffering with this illness.
For some sufferers it could be as simple as a magnesium supplement in the right dose, for others it could be selenium, for my daughter, it’s selenium, folate and the vitamin b family she requires.

I’m happy to answer questions. OP I don’t know if this is giving you any hope and I hope you don’t think I’ve detailed your thread.

picklemewalnuts Fri 05-Jun-20 13:03:31

Popping in to say hello! I have to go out, but would love to join a Fibro thread! Diagnosed about a year ago.

shellby28 Fri 05-Jun-20 13:13:56

Hello fibro club! I was diagnosed in 2016, would love to join a fibro thread too. Hard to deal with when people dont understand

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