Fibromyalgia Action UK

FMS states that people suffering chronic pain and stiffness is down to a spinal deficiency gene that makes our pain much more significant.P?

FMS states that people suffering chronic pain and stiffness is down to a spinal deficiency gene that makes our pain much more significant!

I wonder is any one doing stem cell research into this P gene or whatever it is that makes us suffer such chronic pain, all we can do is take meds to mask the pain and not tackle a cure or a better way of controlling fms.

comments welcome! x

9 Replies

Really? Thats interesting. I haven't heard this before. Didn't think it was genetic but due to a combination of factors. Lots of the causes seem different for people.

'P' sounds familiar though- I've read instead that its a chemical named 'substance P' and is higher in the fluid around the brain & spinal cord, for fibro sufferers. And this (if my memory is correct) increases the sensitivity. But maybe its the gene P that causes this for some people?

Whatever occurs in the body, like you I think we should find the root cause and find a way of dealing with it, instead of just masking the symptoms. The good news is that theres a lot more research taking place- and we seem closer to finding a cure. :)

Gentle hugs, wanderingwallflower xx

(Btw- sorry if this sounds rambly. Am trying best but abit 'foggy' tonight.)


Yes hope more research improves I hate the pain stiffness discomfort n foggy brain too gentle hugs x


I am still very unsure as to what FMS is. When I went to the pain clinic, they said it was our pain receptors had got stuck on HIGH. Rather like a volume control. But I don't fully buy that, because surely then all things that cause pain would be intensified??

I have always thought of myself as having a high pain threshold. I had 6 babies without pain relief.(No I'm not a martyr just didn't need it). Since have FM the pain in my limbs, joints, etc. is beyond compare some days. And unlike labour there is no known end! BUT I can still bang into something or cut myself and feel no more pain than I would normally expect to feel. To the extent that I hit my shin on a wooden planter 4 weeks ago now, and it left such a large lump on my leg that the Dr. has said it might never fully disappear. But it didn't feel any more painfull than normal so I hadn't even looked at it when I did it. If I had and had put ice on it, it wouldn't now be in the state it is. Sorry side tracked again!! But what I am trying to get at, is surely the volume control theory, can't be right??And how does that account for all the other symptoms? The Foggy brain, the IBS, the 101 other things that so many of us all have? Best Wishes.Sue.(Very Confused!!!!)


Interesting comment Sue. I hadn't really thought about it before but you are right. Times I bump into things, get thorns in me when gardening etc and I don't hardly feel them. Yet if I exert myself for even only an hour or so then I get hit by pain in the limbs, muscules or joints used and it can take days to recover. Another area for research?


I can understand how you feel so confused as it is such a difficult subject/illness to get to grips with. If the medical profession are struggling to understand it and even have a common explanation at pain clinics as I was told something different to that about the lactic acid build up in my muscles already being (I can't remember exactly what figure he gave but) something like a third full before we start to do anything and it does not empty well so we get to feel the pain and we get to the absolute fatigue far quicker than somebody without this condition. It does also involve the brain and the sensitivity sensors that are thought to be elevated in substance P which tells the brain how much pain is being felt at any given time and I would say that because we have nerves all connecting to the spinal chord it may be far more complicated than merely feeling the pain all over which we all know is not necessarily at the same time but at times it can be felt in all areas of the body. Then of course there is the problem that we get with sleep deprivation and serotonin inadequacy. So you see it is so much more than just the very silly but simple explanation that has only served to make you feel even more wary of your diagnosis and what is really happening. When you had your 6 babies did you have fibro then to your knowledge as it may be that this has come on since your childrens births and that is why you had no problem with your pain threshold then? I had a nasty bump right on my shin and actually have managed to do it twice now(you would have thought that I would have learnt lol) I crushed my shin up against the inside of the fridge door because I was on my electric wheelchair and to get close enough had pulled the footplate up when my brain just did not work right and I managed to pull up too far and the split time it took to make my head work to think reverse reverse was long enough to have put a lot of pressure on it as the chair at that point is still trying to move forward so crushing. I tell you I felt that terrible and it brought tears to my eyes and I still have the bruise of that now nearly a year on so I don't think that is going to go now. Hope I have not confused you even more and bear in mind I am no medical expert but am just given you the benefit of the experience I have gained and the information I have either found or been told by medical professionals but it really is a lot more than the explanation you were given and I too would have wondered why I did not feel pain constantly all over my body. If we did there would be no flares when we feel things worse than normal. We all feel things differently but similarly as well. Well done on having 6 children all naturally and also for finding time to type on here as that cannot be easy at all unless of course they are all grown up now lol, All the very best from Suzy


Hi Suejayjay,

I am on the pain management programme and guess what? I was told the exact same as yourself and believe it or not I had my doubts as I have suffered with collapsing of my lower discs and sciatica for almost 15yrs now so do know what severe pain is. But this is not like that, this is constant, 24/7 and nothing makes it better. I feel so alone witht this illness as I know my doctors, my therapist and family and friends do all think it is something that we have in our heads and that all us fibro sufferers are loosing a bit of our brains.

Reply LOL I hear you but there is alot to investigate with fms n pain... I too have got a high pain threshhold after 28 yrs of this condition state or whatever it is .... I wd willingly be a research guineapig have done injection trials with Dr Freed from Salford n there did help temporarily but too expensive to get private.


Ps Its Not in our heads ... doctors are so ignorant If they say so!


I just wish the medics knew what they were talking about, let alone us trying to explain it to others and to ourselves!!! My GP did give me some downloaded info, which I presume means she doesn't think it is in my head. Pain clinic just gave me the 'volume control' theory. Rhumatologist diognosed it and said I DEFINATELY had Fibfomyalgia and NOT Rhumatoid Arthritis.

I think my Fibro probably began when I had Menigitis. 13 years ago. Apart from a bad back due to having slipped a disk when in my 20's I really didn't have any of the joint pain etc till then. I did read a report when I first was diognosed and trying to find any info I could, that trauma and in particular head trauma could be a trigger. Anyone else heard that?!!

Several of you have mentioned the P factor? Also why do so many of us seem to have all the other things that make it a syndrom. IBS, Reflux(that was another thing the Rhumatologist was interested in and is also mentioned in some write ups.

After a day of Boom & Bust on Saturday I feel like death today.But why?????

Ah well, back to the drawing board of life. Someone will no doubt make a break through. I'm just thankful it at least has a name!!!

By the way suzyindahouse, I only ended up with 5 children unfortunately as my 3rd baby was stillborn. But all surviving are now grown up(they think!!) and I have 10 grandchildren! Best wishes Sue. x


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