mental health / fibromyalgia

[Mommagonnaknockyouout]

Suffered for years but never known about fibro till somebody at work asked if I had it due to some little symptoms I was displaying. I do suffer mainly with anxiety. Doc says fibro is all to do with mental health what's everyone else's views

My SIL has severe bipolar effective disorder, fybromyalgia and endemetriosis. I think that the physical issues certainly have an effect on her ability to function and therefore her mood, but I don't believe her bipolar diagnosis is anything to do with the physical conditions. She really suffers; everyone on this board who has been diagnosed with chronic "invisible" conditions has my utmost sympathy. It's horrific.

blankblink - www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

blankblink - sorry, meant to post this from here, report from 2013 ME conference

"It’s well known, said Bansal, that certain predisposing factors are associated with CFS, and people with these kinds of immune and autoimmune conditions (such as EDS) have a very high incidence of CFS,"

This is an interesting thread for me.
I'm about to undergo assessment to see what's causing my chronic joint pain and slowly diminishing mobility. My previous gp was useless. I went in and was dismissed with "Well it's probably osteo-arthritis and there's nothing we can do."
My current gp has been a lot more understanding. She thought rheumatoid arthritis more likely due to family history and my age, but the blood test came back inconclusive. I've been referred to rheumatology anyway for further assessment and I have to admit I am scared. It might well be fibromyalgia or something else, I don't know and I'm trying not to over think it all before the appointment. However I have had MH issues in the past and sometimes I am scared I am going to be treated dismissively because of this.

Thanks CFSKate it's good to know so many people are working on it.

Hedgehog like many other conditions, there are degrees of hypermobility. In some cases it's truly disabling on its own. www.blogger.com/profile/08939136229593231935

My hypermobility is steadily degenerating. My entire family have it in varying degrees, with my joints being the most hypermobile. Flare ups are horrific - yesterday I subluxated and almost fully dislocated my elbow reaching out to hug DD. I wish there was more awareness of it, because it's a horrific thing that is too often written off as "just double jointed" - I'm 21 and know that this is only going to keep getting worse. My similarly-aged friend with fibro feels the same; she knows it's going to keep degenerating but there's just no public knowledge of it :(

It might be psychosomatic, but that doesn't make it hurt any less or make it any less limiting.

It's to do with being too stressed. Your fight or flight hormones never get a break, hence many teachers or those with caring responsibilities, which never let up, are liable to get it.

Or you are a high achieving, setting huge demands on yourself (to be supportive/ good at your job etc) type of person. Your hypothalamus is constantly functioning resulting in exhaustion and illness. You have to rethink your life to fix it.

No scooby it really isn't. That's the whole point of this thread...

jorah is there any benefit to an EDS diagnosis? I have hypermobility syndrome and fibro (usual pain and exhaustion, brain fog etc), stretchy skin that scars easily. I have wondered if it's worth asking my dr about it, but rheumatology never mentioned EDS.

Oh, sorry - it's a mysterious illness which will only be cured when the medical experts pour millions of pounds into research to find a miraculous cure which will require pill taking and not require the sufferers to make changes which might help themselves.

OK now?????

Blocking thread.

I think quality of sleep plays a big part. I used to think I didn't sleep well because of the pain. I've gradually realised it's the opposite. I have more pain because I didn't sleep well. I don't know enough sciencey stuff but it feels like whatever is supposed to happen physically during sleep isn't happening properly.

I have fibromyalgia and one of theories about causes of the illness is low levels of serotonin which can also be a cause of depression. I was taking an anti depressent which was treating the fibromyalgia. When I came off it my physical symptoms became more pronounced. So they are inextricably linked.

Have you undergone a sleep study?

hedgehogs that was one of the big things rheumatology told me too. The only thing was that pain from another (somewhat related) condition was causing the sleep disturbance in the first place, which might have triggered everything else (obviously except the hypermobility!)

I don't know what a sleep study is. I had to keep a sleep diary for a month. Is that what you mean? I was prescribed a weighted blanket off the back of that which makes a huge difference.

bucket certain anti depressants can help chronic pain, but that doesn't mean they worked in the first place because of MH links. They use low doses.

Similar story here LivingInMidnight. it's like final outcome from a tangled web of other factors, some seemingly unconnected.

Exactly hedgehogs!

Living it definitely sounds like EDS, particularly with the stretchy skin that scars easily.

Lots of people live with a semi-diagnosis - their doctors have told them "You meet the criteria for EDS", but they can't officially diagnose because so few doctors and rheumatologists are willing to make that diagnosis - so the official diagnosis in itself isn't the hugely important bit as it's all symptomatic management, so IBS meds if you have IBS, physio and pain relief for joints, being aware of stretchy/velvety skin and self-awareness that local anaesthetics will have limited use on you.

Getting a diagnosis is a nightmare, and it doesn't stop the odd doctor who thinks they know better - I had a gastroenterologist tell me the other day that I "definitely don't" have EDS as I don't have the Marfanoid stature. Of course, Marfanoid stature is one of the Minor criteria for EDS - I have both Major criteria and every other minor criteria, as agreed by my doctors and my physio - but it goes to show how awful most doctors are at diagnosing it. Definitely worth mentioning it to your rheumatologist though!

HMSA (Hypermobility Syndromes Association) have a brilliant range of information online and a really supportive Facebook page. I'm hoping to do a charity run (well, a walk really) for them next year, they're brilliant.

I will add though that the problem with the diagnosis is that any and every condition will then be put down to part of the EDS. My GP thinks I may have chronic appendicitis, and every A&E doctor I've seen when I've been taken in with horrendous pain has agreed. I saw a specialist who said "Nope, it's IBS, make dietary changes" - without asking what my diet is like (non-existent at the moment). I think it's more of a doctor personality issue than a general theme, though - some doctors will just tell you what they want to, and let someone else deal with the fallout.

Why do people get so offended by the suggestion that it may be psychogenic? This just means it originates in the brain rather than in some other organ of the body. The mind and body are inextricably linked, why do we insist on treating them like they're seperate organisms? If diabetes was caused by a brain chemical depletion rather than a pancreatic chemical depletion, would it make it any less real? Of course not.

If we were a bit more accepting of these ideas, we might come up with better treatments. I know there is a lot of perceived stigma attached to anything psychogenic, but we can only change that by changing attitudes.

Who cares if it's psychogenic?! It doesn't mean it's under the patients control or that they've somehow brought it on themselves, it just means it originates in the brain. If it can be helped by psychological approaches or psychiatric meds then surely that's a good thing. You don't have to have an obvious mental health diagnosis to get a psychogenic diagnosis.

Can I ask what EDS is please.. I suffer with stretchy skin that marks/ scars easily. I do stress a lot with family life but work part time in a fast pace job

Ehlers Danlos Syndrome

(I assume)