Fibromyalgia

[MrsDylanBlue]

A lot of my FB friends have this and a lot of families I work with.

Is it a new (ish) illness and if not what was it beforehand.

Do we know what causes it.

TIA

Clabdestino i was actually told by doctor that she was told by a professional that it was psychosomatic. I told her that I wasnt making up the pain. Her response was that the pain is very real but my stress had triggered it. It made me feel awful, that I was some how doing this to myself.The issue for me is that I have symptoms that I have never experience before it even knew existed like burning sensation all over my body, tingling and crawling sensation in the top of my head and body, pin like prices in my back and arms and dizziness when walking. When I looked these symptoms it showed neuropathic damage.

I thought that I had read that fibro patients had a certain/or too much of a substance in their cerebrospinal fluid, a protein called substance P?

and recent research pointed at something autoimmune, maybe linked to past infection with a certain virus, the murine one?

maybe I am just rambling. ..

Clabdestino i was actually told by doctor that she was told by a professional that it was psychosomatic.

You will equally find professionals telling you it's not. I believe a proper research is only starting now that they actually recognised it as a real problem, not a made-up construct of "hysterical females". (Don't you just love the "hysterical females" diagnosis? It's like a middle woman automatically has to change to a screaming mad bitch with made-up issues once she is on the other side of her child-bearing capabilities. It's like we are nothing more than a uterus and once we are use-by-date, we can be written off.)
I can look back into my medical history and see some really physical triggers. And I could be completely calm, in a very good mood and relaxed and still react badly to a physical stimulus.

Eenymeeny - you are no more doing this to yourself than someone with depression or schizophrenia is doing it to gemselves.
Just because it has a mental health origin doesn’t mean it’s fake, or you are putting it on. It’s a horrible, debilitating condition.

Neuropathic damage is a very specific thing, caused by things like heavy alcohol use or diabetes. In this, the nerves are destroyed by a disease process. In fibromyalgia, you’re nerves are intact, but proceeding stimuli differently because of stress, sleep deprivation etc.

Donkey - yes, but substance P may be increased due to a stress response. It doesn’t mean there is an organic illness.

chavtasticfirebanger Not all pain is the same. You can’t compare hikdbirth to constant pain. Her pain could very well be a ten and the magazine is taking her mind off it, having a constant pain in my back is annoying but my tolerance is high so it could be worse than it is. With childbirth there is so much more going on and it tends to come in waves. You are expelling a human out of your vagina, with my back pain I never can get comfortable but I can still do what I need to but I don’t get a break. Sometimes it’s worse and I’ll be twisting and turning trying to find a position that doesn’t hurt but I’ll still have stuff I need to do.

@DrScully I could give you few very physical symptoms I have and which are visible on every fucking MRI I go through.
According to my consultants, both neurologist and rheumatologist (who are also fucking expensive as private and are actually top capacities in their field), it's not in my mind, it's not caused by heightened stress or anything even though it can get worse. They looked into my medical history which is thicker than Encyclopaedia Britannica to get to the statement too.

Clandestine - what do you mean your ‘symptoms’ are visible on an MRI? What does the MRI show?

I’ve never said it was in the mind, I’ve said the opposite in fact - see above.

So what have they said is the cause of fibromyalgia?

Why are you so against it having a mental health cause?

The pain scores were never really meant to compare between patients. They’re more for assessing how well that patient is doing or how much worse they are.

Patient A and patient B may be in the same amount of pain but A rates it as a 9 while B rates it as a 3. If we give them a drug and both have a two point drop in what they consider their individual scores to be to 7 and 1 then that’s what we look at - a 2 point drop in pain.

Why does it matter what the cause is though?

Drsully i get what your saying but surely if it's caused by anxiety and stress then if you deal with these issues through medication and therapy surely the fibro symptoms should disappear. I have done everything that the doctor recommended but the symptoms are getting worse and constant.

This reminds me of a very interesting talk I heard at a conference about pain processing, chronic pain and memory pain. I will try to find it but it was in the same line as this

related to changes in the way the nervous system processes pain. Some researchers have shown using special brain scans that these processes are altered in people with fibromyalgia.
@SickofPeterRabbit - this ^^ is not nerve damage.

However, some of the comments in this thread also show the huge stigma that anything mental health related still carries.
The fact that the cause of CFS/ME/fibromyalgia/other conditions might be purely or partly psychological does not make them any less real. The physical symptoms do exist.
You are not doing it to yourself any more than if you had an autoimmune disease.

@DrScully don't get me wrong but I don't own you any part of my medical history and any kind of explanations.

@clandestino well, obviously you don’t. But you offered up your own medical history as evidence to support your point, so it would seem reasonable to expect questions on it?

IamAporcupine, I have no issue with the mental health scenario, infact my symptoms developed in what would have been a very stressful time and I have always been a stressful person. I just wander why when my stress has been very low that the symptoms of fibro have continued and infact gotten worse.

@MimpiDreams Absolute rubbish!!!! It has recently been PROVEN to be caused by nerve damage.

Keep your uneducated, pompous opinions to yourself. You are offensive and rude. I do not have Autism, far from it! Neither does any family member

No it hasn't been proven at all. And as this is a thread about fibromyalgia and the causes, my opinions about what causes my fibromyalgia are just as valid as yours. And I never said you or your family have autism. I said 'the people that I know'. It's your level of anger at the mere suggestion that there may be a connection which is rude and offensive.

But I leave you now to have a go at anyone else who does agree 100% with what you say.

@DrScully - no. This is an internet discussion. I am saving this kind of discussion for medical professionals treating me. I shared enough on this thread and don't feel like I owe anything to an anonymous poster.

Clandestino She hasn’t said you owe her anything... but if you offer up information then you have to expect questions. Whether you answer them or not is up to yourself.

I was diagnosed with it in the early 90's. I have no idea what causes it. My Dr put me on antidepressants saying it would help. It didn't. I was sent for massage therapy and told it would help. Not only did it not help, massage therapy is bloody awful when you're in pain. In me it's mainly my left side that's affected.
And it flares up. I can feel the flare up coming today as I have pain in my neck, upper arm, hip, thigh, ankle and the sole of my foot. That's pretty much buggered up our weekend plans because instead of the days out we were going to have, I won't be able to put any weight on my foot.

I also have IBS now, which I've read fibromyalgia sufferers get quite often too.

@ipswichwitch, your post struck a chord with me. I also have RA, diagnosed 3 weeks after my daughter was born. You mention it hurts when you are touched, knock against something. I get that too, the least little knock can be bloody painful. This is a fairly recent thing for me, just the last couple of years. I've never mentioned it to my consultant in the past but will when I see him in a couple of weeks. I suffer badly from fatigue on occasion but that is definitely down to the RA, suffered from the start with that.

@QuackPorridgeBacon and that's precisely why I didn't go to any detail.
I honestly don't feel like I need to write down my medical history to any anonymous poster on the internet so I don't.

I’ve been diagnosed with fibromyalgia for about a year (and ME for 11 years). I don’t believe I have it. I believe I have hypothyroidism but there we are. From all the reading and research I’ve done I think many who are diagnosed with fibro are actually unwell with something else that hasn’t been ruled out - it’s supposed to be a diagnosis of exclusion but many, myself included, haven’t been through that process. I asked to see a rheumatologist and they refused to see me because I already have a diagnosis.

I can’t walk or stand without severe pain most days. Feels like the bones in my feet have been crushed. Burning pain in both legs and feet, weakness in my hands, but the most debilitating thing is the fatigue since there’s nothing whatsoever that can be done about it.

Fintress My balance is awful so I walk into doorways or stair gates a lot. Every single time I do it feels like someone has punched a really sore bruise. Even my partner playfully smacking my arse at times through clothing can sting so much I’ve had to ask him to stop. He doesn’t do it hard and it was our thing. I still smack his though lol

I do think an awful lot of women get diagnosed with this as a catch all - it is primarily a disease of exclusion, and it has so many overlaps with other conditions.

I wonder how many women would in fact find out they have a different problem with proper in depth investigation? RA, thyroid issues, autoimmune issues, CFS, postviral syndrome etc etc.