The following article has been written in response to a question raised on this forum. It will be published in the next issue of Pain Matters magazine, issue 56, along with articles on topics including benefits, hypnosis and art and CRPS.
If you have a chronic pain condition which healthcare professionals have not been able to get to the bottom of, you may have been told you have ‘somatoform pain disorder’. Pain specialists Martin Johnson and Amanda C de C Williams explain why they reject somatoform pain disorder as a diagnosis applicable to chronic pain.
Diagnosing people with somatoform pain disorder is part of a way of thinking that says that if something cannot be explained medically or identified by medical tests then it must be ‘psychological’. The idea is either that the patient ‘believes’ that they have pain, but doesn’t really, or that whatever pain the patient has arises entirely from mental processes and is not ‘real’ and needs no further investigation or serious treatment. It is different from acknowledging that pain and psychological distress or disorders may be related.
All in the nerves?
Pain science has shown plenty of mechanisms that are not associated with structural damage – all of neuropathic pain, for instance. A minority of pains continue despite attempts to treat them – this is chronic or persistent pain. Whatever the origin of the pain, there is growing evidence that specific mechanisms account for pain’s persistence through changes in the structure and function of nerve cells at all levels of the nervous system – from the nerves all over the body to the brain itself. The process is one of sensitisation of the nervous system so that pain transmission is amplified and the normal mechanisms of damping down pain are depressed.
Barriers to care
The fact that current medical knowledge cannot explain something does not mean that a mechanism for the pain will not eventually be discovered leading to effective treatments. Another limitation is the technology we have for detecting what is going on in nerves and the brain during the experience of pain. It is much more developed now than it used to be, but it is still developing. The concept of medically unexplained symptoms (MUS) is a barrier to improved care and yet it has been widely used within the NHS. It is one thing to describe chronic pain – correctly – as a long-term condition (associated with anxiety, depression and disability), but quite different – and incorrect – to describe it as a medically unexplained symptom attributable to anxiety and/or depression. To attribute a patients experience of pain to a psychological disorder undermines the relationship between patient and doctor.
Diagnosis of last resort
Another objection to saying that a person’s pain is ‘psychological’ is that that is itself a diagnosis that must be justified. It cannot be used just for everything we don’t understand. This is better recognised in America – where the latest psychiatric diagnostic encyclopaedia has moved pain from somatoform disorders to medical disorders – than in Europe. We need to set up good theories of what is happening and then test and refine them rather than resorting to vague and unhelpful labels which leave both patients and medical understanding no better off.
Under what is said above, if this is caused by the patient been sensitized, to pain at some period of time in the past, how would they treat
We can understand that chronic pain is not productive pain and that it will be different , for each person who has the same diagnosis we/they become sensitized to that pain at different levels of discomfort, this does not make their condition a problem that is all in the mind. This is understood by Pain Specialists.
When a person suffers an amputation, phantom pains are still felt after a leg has been removed, how would the medical profession explain that condition, as this is the brain who is tricked in the itch that cannot be scratched, would that be a Somatoform condition, where the chronic pain is not there only the scars where the amputation took place
Could the condition of a person after a car crash where an arm and shoulder are damaged continue on with chronic pain long after the limb in all intents and purposes has healed and pain should have ceased. Would that be the making of a Somatoform condition, Although the pain would come back at later life as the person gets older.and would then need treatment
So how would the medical profession draw the line with this, from being a chronic pain or Somatoform condition.
How would they begin too treat this condition that could not be diagnosed. It makes you wonder. would they treat as a physical or something that is all in the mind, would they panda to a non existent condition and treat as a chronic pain problem that the patient thinks they have
BOB
• in reply to
Phantom limb pain is a form of neuropathic pain - pain arising from changes in the nerves, in this case caused by trauma. A diagnosis of somatoform pain disorder assumes that there is no cause of the pain beyond the patient's mistaken belief that they are in pain - it's a diagnosis which as you can see from Amanda's article is problematic. I would take the article as arguing that whenever someone says they have chronic pain doctors should take them seriously, even if they have not yet been able to determine the cause of the pain.
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Hello Bob here
Many years ago when I was a teenager, we knew someone who had lost a leg in WW11.
He would sit in the bar with his artificial leg and would ask if we could feel his foot for him, I suppose it was a double negative, that brought about a laugh from those who knew Him
When a person loses a limb the nerves that are left will be confused in the looking for the missing parts associated to the removed limb, this is not psychological but is neuropathic, even when the offending limb no longer exists.
Once someone told me that these phantom pain sufferers could feel these pains in corresponding areas of the false limb, again I suppose, that is the brain compensating for the loss of the persons limb. That person will become sensitized to that condition, that could possibly stay with that person for many years.
Those of us with chronic pain suffer at different levels, therefore we also become sensitized to the pain we have The pain then becomes a personal problem that is self fulfilling and a person with the same condition would most probably feel that pain at a different level possibly at a greater extent.
Under those circumstances two people with the same limb removal would feel that nerve sensation at a different level they will be feeling this chronic condition as a personal chronic pain, one at a greater extent
The problem associated with a person who has imaginary pain could have had a problem before and now feels anticipated pain. from that old condition. Say a person has been looking after a disabled person could it be that the carer could anticipate the pain of that disabled patient. over time.
Could that lead to a SOMATOFORM condition in a generally healthy person. That is anticipating that pain in their minds eye
Reading some of this in excruciating pain , loss of vision, hair, changes in my skin, hair , nails , functioning of my mind for example I can not always spell simple words correctly and when really bad I can not count on one hand. I have neuropathic pain all over and severe in my feet. I have severe weavers bottom / Isiogluteal bursitis had it for 11 months and is severe I spend my days crying and screaming for help but no help comes, was diagnosed with Fibromyalgia at the beginging of the year and suffering beyond believe, I want to end my suffering but cant as in a mental health rehab. I sit on big ice packs and in severe pain every minutes of waking hours, I have pain right through my body. I have a slip disc that is very painful now and arthritis in my lower back. I can feel the sciatic nerve painfully on top of other pain when I sit this has progressed and I am in pain in my thighs when walking and sitting and laying down. My vision detreated over night. I also have head injuries and know I need a MRI scan to prove what I am going through but NHS GP says I don't need one!! I have been left suffering for a year now. I am sensitive to medication and so many other things I was sensitive to last year. I have aged 20 years in a year!! I look like a ugly fat freak. I can not bare myself. In s much pain doing this. My GP decided that when I was wrongly diagnosed with Somatoform a month ago that all my painful conditions some I have had for years are due to Somatoform and undiagnosed me!! Leaving me suffering beyond words! I am fuming!! I have never in my life met anyone that's in this amount of pain all over and have so many symptoms. I have tremor bad in the morning and I can not bare the rest. I can barely walk etc etc. I used to lift heavy weight and work out and no I can not lift my arm up , showering is so painful I can only manage it from time to time. I am a mess and so so much more is going on lots of neurological problems. I saw this and thought I would see what others thought. I am desperate for help and need discriminated against as I can not wear my clothes and only have a few PJ bottoms and slipper. I had to go out to the GP etc in them and I was treated like dirt. The GPs have lied re examining me always been with support workers and once a nurse and they all saw how I was treated. They said they have done all the examinations when they haven't done any . I know from intensive study on line and by Brian Charity .org.uk and brain&spine.org. uk that there are people that can not wear their shoes and clothes due to the intensive pain it causes. But the NHS do not know anything about it. I have had no referrals re neurologist to get a MRI and nerve conductor test etc. But lost of people that see or talked to me on the phone after I said what is happening to me said I need the right investigations. I was physically well last year apart form my back. My area where the slip disc was found a year or so ago is now very painful. I wish I could go to sleep and not wake up to all this. Being undiagnosed by severe chronic illness I don't understand why but I know it is wrong. I have worked in mental and physical health and never came across someone like this. I don't know what to do. I want to just curl up in a ball and give up but it is to painful to stay lay down. I can not look after myself but in my last meeting I was told that I could do everything and told that I am going into the community like this. I am beside myself, My mental health due to the horrendous physical health conditions/symptoms means I can not do what I want to do when I want I want to do it. I am left suffering in my room alone. Somatoform disorder diagnoses is a killer to people that are really suffering. I had enough of my Gp's so I got the rehab to get me to go somewhere else. They must have got my records and have refused to see me!! I am having the worst time off my life and that's saying a lot. I have to go but I will be back to read up on the rest of this forum when I can. This has put so much strain on my back etc I am near tears. I want to scream!!
This is very interesting. Thank you Pain Concern for your clear explanation about chronic pain and nerve sensitization. Perhaps if patients had more clear explanations like this they might feel better placed to cope with their pain.
yes, there are conditions where someone has some symptoms that cannot be explained medically, and there is a definite underlying psychological cause.
BUT... it is all too easy to label chronic pain with no underlying physical cause as "psychological". I have chronic facial pain and am well aware that there are some people who believe that atypical facial pain in women of my age is psychological, or even more hilariously, gynaecological. As a result I have had a few battles, including struggling to get a hospital referral, not getting a procedure I had been promised, and being written off completely, all because the doctors involved thought it was all in my mind. When you have people telling you this it makes you very cagey about what you do say at appointments in case they don't believe you, and defensive. It also makes you start to question yourself and wonder if you are imagining it.
Luckily for me I have also met doctors and health workers who have worked with me to identify the physical source of my pain. They also accept that pain management does not come in "one-size-fits-all" and if you don't happen to respond to their suggested treatment it doesn't mean you are making it up, instead it means that you all need to look again at trying it differently.
To give just one example in my pain journey : a GP refused to refer me to a hospital consultant on 3 occasions and at each appointment referred to my history of depression even though I was completely recovered. They prescribed amitriptilyne, which I knew could be helpful for chronic pain, but said, "you might as well take it anyway given your mental health history". I was eventually promised a referral if I increased the dose. Having taken that bribe I got my hospital appointment. The consultant showed me the referral letter which made referance to the depression history again, and asked the consultant to "see this lady just to reassure her" (it might as well have read, "that it's all in her head").
The consultant then folded the letter up and said, "now then, why don't you tell me what YOU think is the problem?" and I was treated like a human being again.
Wow, it's good to hear there are good consultants out there who will actually listen to what a patient has to say. It's all too easy to dismiss our pain as psychological – I'm currently struggling with this with my physio, who thinks I haven't gotten 'better' yet because I have a psychological block and am too afraid to do things that might stir up the pain. My last appt, he told me to go see my GP and get a referral for some CBT counselling. I know a lot of people believe that pain is correlated with depression. For me personally, I've found that if my pain is less, I am happy, if it's worse, I get depressed. But I've been told it's the other way around too – that depression can cause more pain – has anyone experienced this?
Really interesting article – maybe Europe needs to get in step with the US on this, and treat pain as a medical condition, as I'm sure it's attitudes like this that trickle down from above and cause the practitioners who deal with us to label our pain as 'psychological'.
Hi, I am in new York and I have hypersensitive nerves in my pelvic area, rectum. I have noticed over the year that the pain goes both ways. When I'm in a lot of pain,I feel miserable of course,who wouldn't. And at the same time when I'm angry or extremely stressed, those feelings can trigger a flare up as well. I don't think a transmission of pain info between my pelvis and brain that's gone awry means I'm crazy, just that my system is malfunctioning. With that I've learned how to better manage my pain with my mind. Not make it go away but I use some relaxing images and phrases with my eyes closed and really focus and this way I can take my pain level down a notch or two or stop a flare from spiraling into a week long catastrophe. Also, xanax is a quick fix for stress and anxiety provoked pain.
In the bible it says: "It is easier to see the spec of dust in someone else's eye than to see the plank in your own.
I rely on other people to point out some of the faulty things I am doing that has a bearing on the amount of pain I am in.
Emotions affect muscle tension which in turn effect pain. If my stress goes above my stress breakdown point then effective mental control breaks down. At this point it is very easy to label someone as having a "somatoform pain disorder". The person needs to get their internal stresses below the stress breakdown point in order to function effectively and reduce their pain.
However, there is still the problem of pain caused by physical causes which led to the person's stress going past there stress breakdown point because they did not have the mechanism to cope with the pain they had. Everyone with chronic pain has to learn coping strategies to develop reslience for the pain. This can take years. Educational input would save time. Unfortunately there is very little interest among the medical profession in educationing patients in observation and research and experimentation.
Thank Juliansmom, that's good to know. By the way, have you heard about the book, A Headache in the Pelvis? I've heard it's helped a lot of people with pelvic pain.
It seems a lot of pain management courses are going the way of relaxation and meditation nowadays. Over in the UK, doctors are very reluctant to give Xanax, unfortunately!
The problem is that people insist on separating mind and body. We are, in one sense, made of three parts - boy, mind and spirit, and all three depend on each other. A malfunction in any one of them can - and will - affect the others. Equally, a positive thing in one area can influence the others.
Hello BOB here
When I first began my life of chronic pain, it began in the jaw and down my neck to RHS shoulder. It took them 5 years of private treatment and a further three years of appointments in a dental hospital. to prove my condition.
Eventually a further specialist who I had to pay for found the problem, it was Psoriatic Arthritis that was effecting both tendons and small joints throughout my body, I suppose at that time my GP was taking my problem as a Somatoform condition.
As soon as they had proof what was causing pains associated with my condition the GP could not do enough for me and His attitude changed dramatically. This shows how a false diagnosis can be given and the lengths that patients need to go to, for that diagnosis.
Over those years, all the private treatment/manipulation and associated treatments were covered by a Health policy that we were paying weekly, I had to balance the year treatment limits so that I did not need to pay directly out of our own pockets. The only thing I was getting off the NHS was treatments at the Dental Hospital. Sedation treatment was needed and since then are now been undertaken in a hospital environment I was lucky that I was able to find resources to continue my search for a diagnosis, Just before I was retired because of my condition. I can imagine what would have happened if I had not been diagnosed, My condition is still the devil to control. Then I was lucky to have all the support I needed and a very positive and understanding GP, although we all should not take the pathway that I was forced too take to prove my point. I kept my GP and had a great deal of support from their practice. Sadly now I live in a different area and have a new doctor, so am still feeling my way
Now for a certain length of time I suppose my old GP will assist if I need support in my new practice.
So basically I suppose if my condition had not been diagnosed as. A Somatoform condition could have lead to very uncertain life, and many years of untreatable pain. I would have been treated as a complete and utter neurotic. That would have put my life at risk I suppose, and could have possibly caused problems for the rest of my life.
One good thing I have learned a great deal over the years and have helped people through some difficult times. Also my condition has progressed over the years,and I sympathise more with other people who are having problems with their health and mental conditions
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