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

As soon as I read the OP I wondered about EDS. I have EDS and it can go alongside POTS (mentioned above). POTS is an autonomic disorder and can cause high anxiety.
My personal view is that EDS can masquerade as fibromyalgia in some cases. I was diagnosed with fibro 20 years ago, and when I began (yes, I collect them) getting auto immune disease five years ago, it was discovered I have EDS.
EDS, fibro and POTS are all the type of disease that some doctors love to dismiss as 'women's troubles' or they try to explain them away as 'anxiety' or 'depression'.
It is true I have anxiety but this is CAUSED by a physical problem, my autonomic system is up the spout!

Do you not think that depression or schizophrenia are 'real'? How are you differentiating 'real' pain from 'unreal' pain?

I think the problem is that while (most) doctors and all patients would be willing to accept that a disorder may be psychosomatic, because the fact that the source of the issue is stress/depression/an emotional factor does not take away the fact that the pain is very real - the general public who don't have experience of invisible illnesses would come out with even more ignorant shit like "Well if it's all in your head can't you just relax and it'll go?" or "get a good night's sleep, you'll feel better straight away" - and it is linked to the still-massive stigma against mental illness in this country.

Quite often by the time someone gets a Fibro/CFS/similar diagnosis, they've been struggling with the pain for a long time, so it's little wonder that depression/anxiety/stress would appear to be one of their symptoms.

Depression can also be a symptom of EDS, but because you can see that someone is hypermobile, you almost never hear people saying "EDS is just in your head". Ironically my stress levels are higher since I've started having physio etc for the EDS because the physio has told me how serious the hypermobility is, and a lot of my stress stems from not knowing if I'll end up in a wheelchair before I'm 30. I'm sure a lot of the stress and depression that fibro and CFS patients suffer comes from similar places - not knowing what's wrong with them, not knowing how to deal with it, fear of being turned away by doctors - but because you can't see fibro or CFS, it's okay to say "It's all in your head".

Nobody on this thread has mentioned schizophrenia, do you have it?

Heebie I think it's very important not to lump chronic illnesses under the psychogenic umbrella. It's a connection that people with chronic conditions have long fought against, and the idea that if you can't find a physical reason for X then it must be caused by X is very outdated. Just look at the whole idea medicine used to have about stomach ulcers being caused by stress - now we know that they actually come about by bacteria.

If fibro is possibly a catch-all diagnosis, then CFS definitely is. King's College London is currently researching into the cause of CFS and has received complaints to the GMC about their research into the link between CFS and mental illness. This might sound drastic, and you're right that mental illnesses are not 'lesser', but you can understand the complainant's point(s) if you experience the 'treatment' for CFS yourself, which is based on outdated NICE guidelines from a now redundant study under the misguided view that there is no physical explanation thus far, so the disease MUST be MH in origin.

If you can't prove the origin of the disease, why would you spend time assuming that it must be MH related and therefore you should treat the patient for making themselves ill?
No, we know that MH patients do not make themselves sick. But this what people with CFS/fibro are constantly told they are doing if they take up 'treatment', because it is neither truly regarded as MH nor as physical. It's barbaric, dehumanising, and fucking distressing to go through.

There is no problem or fault with having an illnesses rooted in MH, of course not. But the reason chronic illnesses sufferers are so keen to widen that particular gap is precisely because we don't know where these illnesses do originate from. These issues are again all compounded by them being catch all diagnoses, because a percentage of sufferers probably do have some MH issues thus clouding up the issue further.

It's one big fucking medical mess.

Nobody has mentioned schizophrenia. But people have equated psychological symptoms with unreal illnesses and made-up symptoms. I am sorry if my illustration was unclear.

What led you to ask if I have schizophrenia? Were you genuinely inquiring?

Heebiejeebie

Do you not think that depression or schizophrenia are 'real'? How are you differentiating 'real' pain from 'unreal' pain?

Your 23.59 post.

I might add - if you have schizophrenia (assuming it is well managed), you are perfectly entitled to donate your blood or organs. People with CFS are not. So much for all in our fricking heads. Or maybe it'd just be like mental health homeopathy.

Ok no that last post wasn't really relevant but I'm feeling extra frustrated tonight. Sorry

Look, the insistence that fibro is a psychological disorder has meant that my gp was insistent I required mood modifiers because he told me I couldn't possibly be as happy as I seemed. I had absolutely horrific reaction (wanted to kill other people and myself) from 1 dose, yes 1 dose, of the damn anti-depressant.

If it is psychological could you please explain the horrific muscles spasms that can be watched from across the room? The fact that high doses of vitamin D and B complexes has helped reduce pain levels and improve sleep patterns? Why I am reacting to more and more chemical based and natural substances (food/pharmaceutical/soap based)?

Also could you explain the elevated levels of Protein P which has been proven to be linked to increased pain sensitivity although they are still working on the mechanism it works by

Most GPs know little about it, most fibro sufferers take research to their appointments and then discuss it at their appointments because they have to become experts in their disease. Access to pain clinics is almost impossible, getting any specialist help or treatment rare and restricted to very few.

Do a lot of research and the view that it is psychological disorder is historical. It can have components BUT it has key physiological changes. And one of the things that they are now looking at is the protein sheath around the nerves and the mechanisms by which the nerves work. There is some suggested evidence that this is abnormal in people with fibromyalgia. Knowledge in the Uk is woefully behind. Knowledge and access to research is not actually that difficult if you know where to look and have many many hours to kill due to insomnia and/or muscle spasms

I have severe CFS, I've been effectively bedbound and using a wheelchair for five years in January. These conditions have both a physical and psychological impact. How can they not? Your joints and muscles are on fire, this is going to have a psychological impact if even on a basic level.

I take a ridiculous amount of pills a day for the pain and they barely take the edge off. I'm exploring counselling for the impact the illness has had on my life and for childhood issues.

I'm fucked off with this illness dictating my life, I'm starting a degree in February and am determined to turn this around, going to be keeping a diary.

I sympathise and empathise with anyone who has any derivative of these illnesses, they are so debilitating and life-changing

I'm firmly convinced that years of high stress levels caused my CFS. When the stress levels literally massively reduced overnight (we moved home) I went from extremely active 78kg to now, 120...grr.

I got CFS at 10yrs old. Not sure how stress played a part in that, I had none. I got Fibro much older and years of serious lack of sleep was a major issue in that. There is also a pattern in my family with early cfs diagnosis several serious flare up ages which has been followed by multiple individuals. Poor ds has also suffered this fate.

It is one hell of a condition, with no one distinct point of flare up. But there is also a lot of misdiagnosis too. There are people being diagnosed who have actually got nutrient deficiencies. People being diagnosed who actually have sleep disorders.

May the counselling give you some help. For me my physio is an absolute god send.

What I think is most interesting is the fact that if you deprived someone from sleep for 4 days then they will start to exhibit the symptoms of fibro and chronic pain.

I'm also under investigation for fibro symptoms. I've had them for about 12 years now but only realised that I had abnormal levels of pain a couple of years ago so had previously discounted fibro. I've only bothered to go to the doctor about it now because my DH made me go - I wasn't taken seriously when I was first trying to get a diagnosis so didn't want to waste the effort. Doctor took some blood, told me to cut down alcohol consumption to twice a week and to walk for 30 minutes five times a week. I think the walking bit is being counter productive so far - I made myself do more walking than I felt up to on Monday and was exhausted all day yesterday and completely useless and in pretty much constant pain by about 7pm. Of course sleep was then an issue because of the pain.

"Why are people angry and insulted by the suggestion that an illness has a psychological component?"

I find it interesting that people get so defensive especially when anti-depressant medication is recommended for people with chronic pain. I live with chronic pain as a result of an autoimmune disease that has eaten away at my joints. Sadly, there's no doubt in anyone's minds that there is something concrete to see when you look at an x-ray. Part and parcel of managing my pain is dealing with the psychological issues. I don't take it a slight on the 'realness' of my pain that I was referred for counselling and relaxation activities. When life gets on top of me, my pain isn't worse but the way I psychologically cope with it is different. Therefore, it feels more overwhelming. I recognise that not everyone has the emotional resources to manage life with pain. I didn't. I had to gain them really bloody quickly as my life was going down the pan. I am in pain whether I get up and go to work or whether I lie in bed all day. One thing is for certain; if I lie in bed all the time, I get very depressed and have nothing to focus on other than the pain. I do need days in bed or on the sofa with MN like today but I acknowledge that having no distraction means I cannot cope with living in this shitty, broken body. Accepting that there is a psychological component to my pain hasn't made it go away but it has improved the quality of my life.

BBC Cambridge interview with the Norwegian oncologists who are finding treatment with Rituximab effective for two-thirds of ME patients

What about the claim, by the PACE trial, that Graded Exercise Therapy and CBT can treat ME? This is a trial where you could enter moderately ill, get worse in the trial, and be declared ‘recovered’ at the end.

Thank you shirtsleeves, I think it's a really important point.

Antidepressants are very good for neuropathic pain, far better than opiates. I shudder when I hear someone with sciatica has been put on morphine patches but not even tried amytriptiline or gabapentin or pregabalin. More training needs to be given to GPs about neurological pain and effective pain management for it (aka stop with the opiates!)

"Why are people angry and insulted by the suggestion that an illness has a psychological component?"

It is not that we are saying there is not a component. More that there are a large number of doctors who use that as an excuse to not treat the cause of the issue. On you have pain you must be depressed. Nope I have pain and I am fucking pissed off that you cancel the specialist service because of funding, that you refuse to send me somewhere else because it is out of area and costs too much but yet it is perfectly ok to leave me with symptoms that when ever I encounter anyone of medical training they suddenly want to put me in hospital and demand to know why nothing has been done about it. I don't need antidepressants. I need to know have to get rid or just to control that symptom. And I need the medical profession to make up their minds if they give a shit or not.

Oh and you are forgetting that really really funky symptom of fibro which is chemical sensitivity which means that you are 50% + more likely to have a side effect and bad reaction.
Tried amytrip, but a dosage so low it wasn't supposed to do anything. They had to take it off me due to side effects.

Also I am very concerned about excessive and catch all use of anti-depressants especially when the side effects can include depression and suicide.

CantSee Sadly, that is the state of the NHS in 2015 and it is no reflection on the illness; whether it be mental or physical. I have a physical illness and waited months to be approved for a medication due to the cost, despite the fact that the NICE guidelines stated I should have been offered it much earlier. The drug costs £12k per year. Ironically, due to the wait, I will now need surgery that will end up costing more in the long run.

I reacted badly to amytriptiline - cant tolerate even a low dose - so I take nortriptyline instead. I've maxed that out but ho hum it works and I don't get the shit side effects of amytriptiline.

Doctors don't tell you about the alternative because it's more expensive

I just Googled costs of drugs to the NHS and found amytriptiline costs £38 per year whereas nortriptyline costs just under £1300 per year!

These are quite interesting

I cost the NHS £3000 a year for 2 medications alone!

It's definitely worth pushing your GP for neuropathic pain medication - Gabapentin or Pregablin(Lyrica).