I'm taking my theory to my doctor

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I'm taking my theory to my doctor

Postby somebody_else » Fri Oct 13, 2006 4:01 pm

I've always been very interested in autoimmunity and the human body etc. I've done several courses in biology and anatomy & physiology and have put together a thoery about fibromyalgia and autoimmunity.

I discussed it briefly with my doctor and he said it's a strong possibility, so I've now written it out and will take it to him next time I go. Obviously I've left out scientific detail because he should already know all that. I'm sort of hoping he agrees with me and writes a paper about it. That way, someone might take it seriously and do some research or something in this area.

Anyway - here it is... let me know what people think. I'm happy to answer questions and I'd love to know anything I've missed or any reason it might not make perfect sense.

The symptoms of FMS/CFS/ME overlap in places and are similar, yet people report different symptoms and to different extents. This is also true of autoimmune diseases. Two people with the same disease can have different symptoms and to a different extent to the other person. Symptoms of known autoimmune diseases also overlap with CFS/FMS/ME symptoms.

I believe that ALL the symptoms that are experienced with FMS/ME/CFS can be traced back to the hypothalamus and things related to it.

The hypothalamus is a collection of nerve tissue in the brain that controls the endocrine system via the pituitary gland and the autonomic nervous system. It controls, amongst other things:

Body temperature
Response to pain
Level of pleasure
Sexual satisfaction
Blood pressure
Sense sensitivity

It's supposed to pick up information like, how full you are, how tired you are, smells, tastes, how hot or cold each bit of you is, how much sugar is in your blood etc.

It makes perfect sense therefore, that the symptoms of FMS/CFS/ME all stem from a problem with the hypothalamus.

Taking myself as an example: Mine can ALL be related to what it does. Even down to never knowing when I'm physically full. As a child, I would only stop eating when I ran out of food or it was taken away from me, or I threw up. Even now, I never feel full or empty; I just go on cravings or knowing I haven’t eaten much (or too much). Even urge incontinence - the hypothalamus is supposed to be told when the bladder is full. This occasionally stops working for me, and I don’t know I need the toilet, until suddenly my bladder is trying to empty itself and I have to dash to the toilet... and often not make it in time. At 27 years old, this is not supposed to happen!

I think there is a relationship to autoimmunity, as that would explain why the symptoms appear to fluctuate with ANA levels. It would also explain why things like short-term memory are affected, and the mental problems like anxiety, repetitive behaviours, addiction tendency and depression, as the bits of the brain that control all of them are close to the hypothalamus and interlinked with it. Damage to any of those areas can cause all sorts of mental health difficulties; OCD, anxiety disorder, even schizophrenia and psychosis. It would make sense that if there was slight damage to the hypothalamus from autoimmunity, the bits interlinked with these parts wouldn’t work properly either, giving rise to the addictions and mental health problems that are associated with people who have FMS and ME - they are mostly perfectionists, who are easily stressed and often cross the line into OCD type behaviours and suffer anxiety and depression.

So, what caused it in the first place?

There is research to suggest that high stress levels can trigger autoimmune reaction. Taking my personal circumstances…. My mother is a highly strung person with similar problems - could that have caused problems from the very beginning? I was highly stressed as a baby as my mother was volatile and emotional. I stopped eating at 6 months for no known reasons, and although I was diagnosed with Hashimotos at 4 years old, it had taken my mother 2-3 years to get anyone to take her seriously about my not being well. So it seems that I was affected from a very young age. I had many of the symptoms I have now even at the age of 6. SO, could there have been problems from birth? I don’t think so, since the symptoms are variable, and change. I can go for many months with emotional problems and pain being the worst symptoms, but then the pain lessens and the fatigue takes over, alongside poor physical health in general, but stable emotions. This is why I think it's autoimmune related.

Maybe there's a genetic reason for it (likely as my father has psoriasis which is autoimmune, and my mother has similar problems to me but not Hashimotos) and combined with the high stress in my early childhood, triggered it sooner than it would have done had I not had a high stress childhood. My mothers seemed to be triggered by a period of intense stress and many people report the same. It does make sense, since the hypothalamus is responsible for dealing with stress. People also report onset of fibromyalgia after a trauma to the head, and M.E is thought to be related to viral infection – the immunity link again. Could an infection or virus trigger an autoimmune response? Is it mycoplasmas maybe and not viral? Is it a virus which sits in the nerve fibres or changes them in some way to trigger an autoimmune response? This again could explain why some people are affected so much more severely than others.

Would the problem show up on any type of scan if my theory is correct?

That would be very interesting. And if I'm wrong, where does that leave me? What else can it possibly be? I honestly can’t think that it can be anything else. Nothing else makes as much sense as this; everything else has gaps or flaws. This is the only theory that makes perfect sense and covers all the symptoms.

In the event that it isn’t kept under control, could it get worse?

If this theory is correct yes, it could get worse over time, suddenly or slowly. This is why some people find themselves in wheelchairs but others only seem to be affected slightly. This explains why it does seem to get worse over the years for some suffers yet others find they go into remission and cope wonderfully (the same as people with other autoimmune disease). Also, nobody has discovered how to cure or prevent autoimmunity yet. It can be controlled in other areas with certain drugs, but as the hypothalamus controls so much of the body, I doubt the usual controls would work. The only way to keep it under control and minimalise damage is to keep the body as close to homeostasis as possible, which is what the hypothalamus is supposed to be for in the first place. Understanding how to do that is the only way to fight the battle, since the hypothalamus can’t do it by itself any more.
Hashimotos, CFS, FMS, PTSD, Anxiety. Gosh, I have more letters than the doctors who diagnosed me!
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Postby holly » Fri Oct 13, 2006 4:08 pm

Wow, go for it and I hope you get some good answers i think that it is a great theory.
Bye for now - holly
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What about emotional trauma?

Postby sarah » Sat Oct 14, 2006 10:35 pm

I am sooooo interested in your theory and reading it really makes sense, hope your doctor can do something useful with it. Just wondered if emotional trauma such as a family death could trigger FM and wether this sense of grief and loss is related to the hypothalamus. Would be interested to hear from you as I think my FM was triggered by the death of my grandma. I thought I would cope really well with her death but in the event, I coped appallingly and 4 months later the first severe symptoms of FM started disturbing my life. I find that my FM waxes and wanes. After I was put on amitriptiline I have underlying stiffness and aches but nothing that is unmanageable, but now and again it flairs up and I feel like I've been hit by a car!!! What you were saying about the hypothalamus - ccould it be an intermittent fault? I often feel like I have an intermittent fault, and I usually let myself down in the most embarrasing times. I know many others suffer this FM hiccup as well. Still it makes life interesting doesn't it!!!!!!!
Thansk for sharing your theory with us.
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Postby Marie » Sun Oct 15, 2006 2:12 pm

Hi somebody else,
I think your theory makes perfect sense. Its well documented that stress is a major cause of many illnesses, and how our bodies deteriorate when we are stressed for long periods of time and our immune systems become low or non exsistence. My fibro started after many years of major stress from a young age.
I really hope you are proved right.
Keep us posted.
Marie x
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Postby susan » Sun Oct 15, 2006 5:52 pm

I hope that your doctor takesis seriously it does sound right mine was triggered by an accident and emmense stress.

Im just about to start treatment is there anything you can recommend?
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Postby somebody_else » Mon Oct 16, 2006 10:02 am

I'd imagine it can be triggered by ANY emotional event. Especially negative emotions - abuse, trauma, death of a loved one or well-loved pet. The hypothalamus translates emotions into hormones and neurotransmitters essentially, which then affects your entire body.

So yes, it would also be intermittent, and flare up with hormonal changes. Anything that affects hormones and emotions will affect the fibromyalgia (and I'm sure we've all noticed that) and vice versa which is why it's so easy to get into a vicious circle.

If it is autoimmune, it would make sense that hormonal changes can trigger a flare. With the weather changes, I always get a flare lasting a week or so. when it changes back and forth, warm to cold, it's a nightmare and can go on for weeks. Every 3-4 weeks I have a mini flare lasting a couple of days - probably linked to PMT type changes.

As hormones change, it would signify a change in the hypothalamus. An autoimmune disease will flare up with any changes in the tissue its attacking, so it makes sense that fibromyalgia will flare upw ith hormonal changes in that respect too.

As for advice ... well... I'm working on tracking my natural hormonal fluctuations and managing my fibromyalgia along the same lines. If I know I'm due a hormonal change, I know I'm likely to flare for a few days, so I make sure I dont book anything important in for that time. Obviously things like the weather you cant really predict, but the general time of year you can - so explain to people that the weather changes, especially the seasonal ones which affect sleep etc, are likely to bring on a flare period for you, so could they be patient around those times of year? You may have to reexplain over and over every season, but eventually they'll get the gist.

So yeah, tracking regular hormonal changes, and doing damage control. Also, I find it helps just knowing WHY I might be flaring, and being able to look for the cause. And, I have noticed that I get a break out of spots along my jawline as a flare starts. It coincides with the smaller signals for me - like increased noise and smell sensitivity. And the spots tend to go again as the flare ends. So that's a useful marker for me. It means I can notice and plan for it as best I can... warning people, cancelling things I wont be able to handle etc etc. If you can work out your own warning signs, maybe that will help you too?
Hashimotos, CFS, FMS, PTSD, Anxiety. Gosh, I have more letters than the doctors who diagnosed me!
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Postby holly » Mon Oct 16, 2006 1:17 pm

Hi everyone

If it is hormonal don't know if I am being thick or what but I can't track hormonal changes I had a complete hysterectomy at 31 so I don't get any hormonal changes or well at least I think I don't. I am on HRT which I have been taking since I had it done because of early onset of osteoarthis you know bone desease! Sorry not very good on spellings etc any ideas of tracking this would be helpful.

Speak again soon and best of luck somebody else.
Bye for now - holly
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Postby susan » Mon Oct 16, 2006 1:43 pm

i wondered why i was getting spots on my jawline i cant believe how much i have learnt from you all and the hormone canges make my pain terrible and the weather effects me badly i was diagnosed 9 days ago and still have no medication any idea what works on pain as ibrufen isnt working.

many thanks this forum is a much needed lifeline.
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Postby somebody_else » Mon Oct 16, 2006 10:47 pm

*nods* If you've had a hysterectomy and/or are on HRT, it is probably quite difficult to predict. Hormones arent just the ones that cause PMT and our monthly cycle, adrenalin is a hormone, as is thyroxine and many others which fluctuate without us really even noticing - including, and this may interest you even more - dopamine and melatonin, via the pineal gland, which help regulate sleep patterns - the one thing scientists are pretty sure of is that people with fibromyalgia dont get proper sleep, and that if you deprive a normal person of sleep, they develop fibromyalgic symptoms.

Aaanyway, so, yes, the only thing you can do really, is keep a very accurate diary of symptoms. Maybe make a chart of ALL the tiniest symptoms you can think of that you experience and each day tick off which ones you're experiencing - after a while you might start to see a pattern... like, "Oh, two days before I get a lot of pain, I'm more sensitive to sounds than usual" or "Ah, my fatigue seems to get bad just after my skin gets more oily than usual" or little things like that. It could be the tiniest changes, and it might take a while to notice them. I've spent many many years learning my body and what's normal for it and what affects it in what ways, but it's working to my advantage now. Also, it's a good idea to keep a food diary too - foods can affect hormone levels, and certain foods might trigger similar reactions to other hormonal changes. It's worth knowing when it's just a reaction to a food, or when it's predicting a flare coming on.

As for medication - different peopel react in different ways to medications. Personally, I take diclofenac every day, and tramadol when I'm in a flare (along with other drugs for other things) I'm signed off work and struggle with simple daily tasks sometimes. My mother however, only takes amitryptalin nightly and she manages to hold down a fulltime job with no days off sick, does overtime and keeps her house spotless! BIG difference. Maybe ask your doctor what they can offer you and try out each drug over a decent period of time, only one at a time so you can monitor how it affects you. I started taking magnesium malate a few months ago... took one pill for a month, no difference, so now I'm trying 2 pills a day, and I think it's helping, BUT I made the mistake of adding in a clove of garlic a day to my diet at the same time, so now I dont know which is making what differences until I stop one of them and see what happens! Also, sometimes the order in which you take stuff makes a difference. Like, vitamin C didnt work at all for me a few years back, but then it DID work when I started taking it this year... hmm... weird, but then I realised, I started taking zinc last christmas, and vitamin C is absorbed better with zinc - so that must be why its helping now but wasnt to start with. Little things like that can make a big difference.
Hashimotos, CFS, FMS, PTSD, Anxiety. Gosh, I have more letters than the doctors who diagnosed me!
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Postby ShelB » Tue Oct 17, 2006 2:29 pm

That is very interesting and thanks for posting it, it has given me something to think about.

The easy choices are the ones you make when you don't know enough to see how complicated things are.
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Postby AndreaC » Tue Oct 17, 2006 6:23 pm

Yes, Thank you so much for posting that! Certainly shed some light and makes a lot of sense!

Let us know what your doctor says and whether there is any larger response from his colleagues/the medical community.

Thank you again!

I usually try to take things one day at a time, but lately several days have ganged up and attacked me at once ;)
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Postby joyaura » Tue Oct 17, 2006 8:28 pm

Yes very interesting reading, Some bits confussed me even more but hey ho thats not hard to do :D -- I do not relate to this piece from your first post ---

giving rise to the addictions and mental health problems that are associated with people who have FMS and ME - they are mostly perfectionists, who are easily stressed and often cross the line into OCD type behaviours and suffer anxiety and depression.
I do not suffer from any of this . I do get days when I feel very low but I think that is more a feeling of ' I am fed up with all this ' than being depressed.

Nether the less I do hope and pray you have come up with the answer to what this awful Illness is all about well done .

You only get one first chance to met someone - smile and say hello
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my theory about fm

Postby angela » Tue Oct 17, 2006 11:40 pm

:) I believe that its a Dormant Virus contrated at some point in early life and it rears its ugly head when the body has suffered a trauma be it physical or emotional !
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Postby somebody_else » Wed Oct 18, 2006 12:10 pm

Right - progress, slightly.

A friend of mine got to see a neurologist yesterday, and she put the theory to the neurologist. The neurologist told her about post-infectious encephilitis and autoimmune encephilitis and said that there is research being done at present to see whether autoimmunity could be affecting only small part sof the brain and what effects this would have. She basically told my friend that it's highly likely that this is what is happening to her, but that there's currently no way to know or test for it, nor is there a name for it yet.

The neurologist also confirmed to her that fibromyalgia is a collection of symptoms that can be caused by several different things - triggered by different things if you will. She said that ALL the current theories seem likely and that different peopel will have it for different reasons - that all makes perfect sense to me! That explains why the symptoms are so wide and varied and why it seems to affect peopel differently, and also why it can be triggered by different things for different people.

She also said that in the instances where it's autoimmunity causing it, it is likely to be progressive for some peopel but go into remission for others, and that people will be affected to very different extents - again, makes perfect sense and explains why some peopel think it's progressive and yet for others it isnt, AND why different drugs help different people!

It was like a huge breakthrough hearing all that. I've asked my doctor today for a referral to a neurologist down here (the one my friend saw was in glasgow) to see what they say too.

The other thing to note, is that her neurologist said that the autoimmunity could be caused by a virul, a bacterial infection, or mycoplasma infection. I read about mycoplasmas recently and wondered if there was a link - I even took a print out to my doctor who said that it was viable but current treatments for mycoplasma infection is a 2 year intense antibiotic course which isnt guaranteed to work. Mycoplasmas are being blamed for a lot of autoimmune problems, but also other similar problems like ME and suchlike.

My mind is really blown away that a medical profressional confirmed everything I've been thinking. I'm sort of pleased but scared at the same time. For some people this could end up being more serious than we thought.... but at least it'll be proven that it's not "all in your head" once and for all... (although actually, it IS in our head! Just not in the way they mean it!! hehe!)

I'll keep updating as I get more information. My friend has another appointment ina couple of months with the same neurologist, so might be able to tell me more. I've given her a whole heap of questions to ask already! Hehe! Also, I'm hoping I'll get a referral and some more answers too.
Hashimotos, CFS, FMS, PTSD, Anxiety. Gosh, I have more letters than the doctors who diagnosed me!
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Postby HazelB » Wed Oct 18, 2006 10:54 pm

thanks for sharing your theory - it certainly seems to make sense, and i'm glad that your friend's neurologist was able to confirm you are on the right track, at least for how it affects some of us.

I was especially interested by the bit about spots along the jawline - just recently I have noticed I seem to keep breaking out in spots along my jaw & neck area .... didn't really give them much thought, but will be paying more attention in future as to how the clear up or re-appear. Another area I've found I break out in spots now is under my bra-line!!!

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