Neurotransmitters (brain hormones) become disregulated causing shortage of serotonin as well as shortage of amino acid tryptophan (pre-cursor to serotonin), as well as shortage of magnesium, and high levels of something called Substance P (not a clue what that is). Then we get sensitized nerve endings causing hightened pain levels (we know about that one!!), sensitivity to noise (dont have that one but my neighbour does), thermal fluctuations (oh yes!), and understandable exhaustion after that lot. I think I've had this condition for an awful lot longer than I thought, and it most def. is not in my head. It's real, it's horrible, and if this info. is out there for me to find, how on earth can they justify insisting it's not?!!! As we know, stress is NOT helpful either!!
This is the 1st time I've seen the whole thing in coherent terms and it does make sense. If anyone has any more info. - I'm wondering if the endocrine system & immune system can be affected because that would make even more sense. G'night (I hope) and sweet dreams. x
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tulips123
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That's a good basic summary, and it explains why we get prescribed antidepressants even when we insist we aren't depressed. Their job is to try to scramble these signals that are firing into our brain screaming pain and try to relieve pain that way, high levels of substance P make us extra sensitive to pain or tell us we are in pain hence the anti depressants to scamble the signals.....I have a good anti deprssant that suits me along with a very low dose muscle relaxant for the spasms and touch wood I am jogging along calmly at the moment. But that's come after years of acceptance , giving up work and pacing along with meds...
Thank you VG, explaining the substance p thing. Re.muscle spasm, what do you take for that? Also, I thought the anti-depressants were prescribed 'cause my forced life style of monotony & boredom sometimes makes me feel so low.Whilst my daughters were growing up I spent so much time in and out of hospital, and they were in foster care for 2 years (lovely lady, they still see her), I feel so lucky that we got another chance to bond and it's never too late to do that. We are an incredibly close family now, and I owe it to them to keep fighting. I refuse to let them down again, and grandchildren are an absolute joy! Um, sorry wondered from the point. Back to the anti-depressants, I believed that if I could work they would not be necessary, but clearly not quite that simple (if only). The irony is not lost on me when the 'powers that be' judge us as scrounging, lazy time wasters! If it weren't so tragic it would be funny. xx
I have emergency supply of 2mg. Diazepam which I only take one of up to 3 times a day in real need... my shoulders and neck muscles are constantly in spasm .. I do take a very low dose.0.5mg clonezapam at night that helps along with my 75 mg dosulepin ( anti depressant ) . I am also incredibly lucky in having a great GP who got me referred to my local pain clinic who inject my shoulder and neck muscles every 3 months to keep the spasms to a minimum and I also listen to relaxation on my iPad .
Yes we can also get very depressed at the change in our life style I was diagnosed at 25 .... 23 years ago...
Have you had your antidepressants checked ... My dosulepin is the 4th antidepressant I have tried and this one suits me perfectly , I feel calmer I sleep better and have no side effects... This was only discovered 18 months ago I had been trying the others and giving up due to reactions and thought I would never find anything to suit
yes thanks for that, will have a word with gp. she's been so good to me and she is always open to suggestions, and I never feel I'm wasting her time. She will always come to see me, never in a rush. I tried infusion but benefits were limited and did not last beyond a week or 2.
I knew my problems went back to aged 12 (now 51) when I lost my hair, but other things like the thermal fluctuations and aches & pains (put down to growing pains at the time) go back to the year dot.
I get a heck of a lot of support from the peeps on this site, which means I can let stuff out here, and dont need to worry my family so much. You guys are heroes, with more than enough to contend with already! x
Anti depressants didn't help me, so I've had to find another way.....what I've learned is that 80% of seratonin is stored in the gut. Releasing it from there means dealing with the toxins which are stopping it from getting where its meant to be.....so I've done down the leaky gut route.
That explains the digestive problems. What is 'leaky gut'? You know, I can see why people see us as hypochondriacs. There are times when I become obsessed with looking for answers, but when health (or lack thereof!) rules quality of life on a day to day basis you just cant help it. My hubbie used to say, walk a thousand miles in someone's shoes before judgement. My hands are raw, cracked and bleeding, and I'm out of cream (steroid), I've got moisturiser. See what I mean? Obsessed. Hope you have a good weekend! x
You have been doing some reading, always good to develop a good understanding.
FibroAction article by Lindsey promotes being an expert patient and being aware of the diagnosis in the aim to be informed so you are empowered to aim to get the best treatment possible.
Just for interest only I read recently regarding CFS research that the Mitochrondria (main cell) may be not functioning as it should and the synthesis of Adenosine Triphosphate (ATP) which is an important enzyme that provides energy does not carry on in a continuous cycle because of the cell dysfunction.
Basicially when the energy in the cell is used the body does not produce more as it should as with healthy people. I found this very interesting and I could relate it to my experience of fatigue (as will most of you I expect). It is simply when the energy is gone that's it !! aka Spoon Theory!
Anyway as we were on the subject I thought I would mention the ongoing research into M.E /CFS,
If you take out the technical language, I could have written these texts! It might seem a bit strange, but I feel vindicated. Until I found my current gp surgery, I spent years in and out of gp surgeries knowing full well I was wasting time, their's and mine, but did not know what else to do.
Onwards and upwards! Many thanks Emma. You do an excellent job.
Hi tulip just wanted to say substance P is a biochemical in conjunction with fybro it acts as a neurotransmitter influencing the balance between the hypothalamus,pituitary, and adrenal glands the hp axis,substance P regulates sensory mechanisims. it causes pain if applied to the cut ends of the sensory neurons, so it may be responsible for some of our sharper nerve pains it is also a vasodilator which causes the blood vessels to widen. it lowers blood pressure, causes smooth muscle contractions in the gut,causes constriction in the airways, and may increase mucus production. ps im not a medical person but i bought this book from amazon second hand it is called the fybromyalgia advocate by Devin J StarlNYL. MD
HOPE THIS HELPS BOOK ARRIVED TODAY YIPPEE only problem is it is pretty big and heavy for me to hold, but i will get there lol stay positive and keep posting. we are all in this together not like the horrible mr s cameron clegg lol.
Hi Pinot, THANK YOU SO MUCH. I have spent years trying to join up the dots. That last bit about the gut, and then constriction of the airways, This is the most recent problem going back to 2010 after my oh died, I was given diagnosis of alveolar hypoventilation which excellent consultant has put down to severe double pneumonia causing scarring at the bottom of the lungs reducing ability to inhale sufficient oxygen, causing build up of bad gases, and I use oxygen concentrator at home, portable (ha!) cylinder to go out. Mobility (fm and arthritis) is already poor, just something else to restrict my life. At 51, I feel much too young to sit in a chair and stare at the goggle box. To me, too much of a coincidence to get more problems after Paul died, when since the age of 12 every time life smacks me in the face another part of my body goes loopy. I was told the breathing problem just unlucky and nothing to do with fm or anything else (stick a pin in the medical dictionary, yes probably got that too!). It all makes total sense. The adrenals almost packed up, took me 3 years to get off the blasted steroids. Thyroid went haywire after birth 2nd daughter 24 years ago. It would seem this condition (for want of a better term), pretty much affects the whole body. Not just a chronic pain condition, but every function necessary for the body to operate efficiently. No wonder we feel so bad (cant find a word to properly express, but i'm sure you know what I mean!).
I'm sorry, got a bit carried away.I wish you all the best, nice summer to look forward to. I will be taking a look on Amazon for that book. Many thanks. xx
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Costocondritis Hell 😖
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