Has anyone on here been diagnosed with somatoform pain disorder? If so, how did you react and what advice would you give to others? Thanks

I'm putting together an article for Pain Concern's Pain Matters magazine responding to a call on our helpline. The caller was (with good reason) confused and upset by the implication that her symptoms were only psychological. If any of you have experience of this and have found positive ways of responding to such an unhelpful diagnosis which we could share with our readers that would be really helpful.

Thanks very much for your help.

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17 Replies

  • Hello

    Personally I have not had or dealt with this condition, below is how we dealt with patients in a mental health group. to give encouragement and confidence

    I have heard about this only in the background, it is a problem trying to explain to a patient what is going on in their head. Generally it is up to the GP to try and sympathetically explain what is going on . the patient is, in their mind, ,suffering a real illness that is causing a great deal of problems.

    Sometimes the subject is reticent that the condition is real, although many people would feel that the person is malingering so in this day and age many would not understand that the condition is generally in the mind and would need informal treatment to deal with it.

    When I was doing my voluntary work in a mental health situation we would try and sympathize with a firmness sometimes when the group went out for the day with other members. as with when in the centre we would push a little to see and give confidence to the person in doing activities, like pick up parcels or even try and get them to participate in book reading, story writing or other tasks that they might find a little bit tasking for their condition to give confidence to the mentally ill patient. The tasks were there to give the patient confidence to try outside their activity box, something they thought they could not do because of their condition. All conditions are different

    It is no use pushing and pushing the patient then becomes wary of the society that they are in and the condition becomes more self fulfilling so chances in giving the person confidence is lost, possibly to a greater extent.

    Also it is no good to have the patient being left out of the group, that may feel that they are swinging the lead. this again becomes self fulfilling.

    Personally I feel that it is important that the person is given encouragement to do various jobs, possibly in pysio gentle exercises that get a little more tasking over a longer period of time so that the patient gets confidence in the person that are treating them

    One activity can be swimming, all activities need to be done in a group that lightens up the confidence and makes them realize that they can do more than they thought, as the able bodied group gives the patient confidence. This generates a feeling of acceptance and wanting to succeed.

    This of course is hypothetical and depends on the patients seemingly real condition and their feeling that their friends believe in their condition

  • Hi

    The diagnosis can be due to the ignorance of the medical profession who have no understanding how muscles can cause a great deal of pain. If you can afford it see an Alexander Teacher and a McTimony Chiropractor. Both of which are trained to understand how muscle functioning can cause pain and can help you reduce the bad muscle functioning which cause pain..

    A consultant, who often ignores muscle functioning, says they cannot find anything. The psychiatrist considers the consultant is fully competant and if they cannot find anything then it must be in your head.

    You must look to people who are skilled in using their hands.

  • Have you taken the Alexander method? Can you tell me more about it and how it has helped you? My husband is with chronic joint pain for years and has been considering "alternative" practices. peerdiagnosis.com/psoriasis...

  • I have been doing Alexander Technique for over 35 years. I have been treated by a McTimony Chiropractor on the NHS since 1994.

    The Alexander Technique is taught by an Alexander Teacher who helps make you aware of the muscular tensions in the body. The teacher shows you with the aid of their hands that you can use a lot less muscular tension when doing things.

    I got hit by a ten tonne bus in 1991 which rammed my upper arm into my neck. I rely very heavily on the ability of the Alexander Teacher to make me aware of the muscular inbalances and faulty muscular usage. Without the damage caused by the bus much of the muscular inbalances would not be important. However there is damage present. There is much reduced stress freedom before I hit stress overload. This means that every item of muscular stress that I generate by faulty muscular usage becomes important.

    As you find that you do not need to tense your muscles so much and you work with more relaxed muscles you find that you become more aware of what you do that can generate pain and what you can do that enables you to function with reduced pain.

    I have found that Alexander Technique when you have chronic pain problems is not enough. You need to study mindfulness and meditation as well. These are Buddhist techniques which have a history of overt 2500 years. Mindfulness is now hitting the news as a treatment because psychologists have discovered that they can make lots of money teaching it. I have been doing Mindfulness and meditation for 40 years.

    The buddhist society thebuddhistsociety.org is a good place to obtain the whereabouts of a buddhist group near you who can help you learn mindfulness and meditation without the ridiculous charges a psychologist will charge.

  • Hi I was told it was all in my head for 7 very long years, It was only when I agreed to take part in a residenical pain management course that the consultant really had no choise after just three days, I was in uncontrolable pain by this stage, That I had an intractable pain disease or failed back surgery etc loads of different names all wolly but at least it was not in my head anymore and I was treated with more powerful pain killers which gave me my life back a little anyway. Its so hard for these so called experts to get it right I hope it gives you hope I am now 20 years in to this pain and still going although its hard every day :) :)

  • I had pain 3 half years ,nobody listening ,offered pain management and anger management.I have just discovered Mag Phos ,and i want to tell the world ,it was all to do with my tissue salts not being balanced .Look up tissue salts ,it is amazing .I knew nothing about them ,after tons of nerve blocks ect that didnt work I gave up on my GP.,fingers crossed Im on my way ,to getting my life back .Please look into Mag Phos , Good luck

  • Hi I don't have any answers really but after 20years of alsorts of different dignoses all very wolly and some indicated a physiological problems. But of course depression is there but the real reason for it is the suffering pain day in day out. It take time and patience with these so called professionals to get it right. Sorry I can't help but time and added problems over that time lead to other dignoses. Sometimes you just have to get from day to day with strenght and resolve, even if its not for you but your family that we survive another day :) :)

  • I keep getting accused of depression and anxiety causing me pain but I was perfectly happy until my nerve damage. Being in pain 24 hours a day for as year is making me depressed. Non pain people even doctors don't understand. Yes I struggle to act normal everyday.

  • Many thanks to all of you who responded. The article should appear in the next Pain Matters magazine.

  • Is this magazine just on line, or can we purchase an actual copy? I am new to this site, and finding it very helpful and informative. Many thanks.

  • Ah yes' This one we all battle with, and like all things unseen and unmeasured, (pain) the caustic look ,the knowing pursed lips with the ever so gentle nodding of the head to whispered comments from whoever, but like all else it depends on your sensibilities on the given day as to how you deal with it, or how sensitive you are to possible criticism. Myself personally I am egotistical and proud and any hint of criticism makes me ruin my day or even a week , and I'm sure, the medical professionals have their little thoughts that they keep to themselves around malingerers and psychomatic-ness , and as someone who like a sponge soaks up the looks and expressions on those very professionals faces, that makes for so much more stress and tension, that I believe has so much to answer for when the spine and back areas are involved, for I've nearly cried sometimes when all of a sudden all my severe pains all of a sudden fade and I move so much better, and that makes me think of those pursed lips and the knowing nods, and Yes I use it as a rod to beat myself, for can they be right, is it all in my head, am I a liar do I make it up.

    Well' I know myself and it's taken me a while to understand certain pains and what makes it worse and like all proud people that lives with differing conflicting feelings must do and I also believe that there is a part of the brain that deals with pain and it sends out sub signals that warns you and that might explain why some people favour a limb say , long before there are measurable signs that there is problem , and maybe some people are more sensitive and pick up early these signs, who knows, but from my own experience pain is traumatising and if you've had to go through an abscess on your spine, believe me even to this day I'm terrified of having to ever go through that pain ever again, and I recognize (when there are no drugs masking the signals) the pain again and there is a big difference from the sudden electric like shock like that makes your leg jump or the one where if you've moved too much and you lie down and your body all of a sudden jumps from the naval area, and although hardly any pain but the shock of having your body jump, or your head snap back, again no pain like the one with the abscess in the spine, but the shock, of it must have made it's mark, possibly in a part of the brain where other things are , or in a damaged brain and attempts at mending itself bring maybe certain signals to close for comfort, H'mmnn, seriously , I have driven myself to distraction trying to work out why some days I can't move, yet on others, or walking and moving ok one minute only to turn ever so slightly and the pain is unbearable.

    All those things I can't answer because they are just so bloody annoyingly unpredictable, but what I do know there is more to pain than pain , and many differing sensations that we call pain.

    Now all that will mean nothing to those of the type unless they feel it themselves than it is just not there, I know I was one, and maybe that is why I am far more neurotic around being believed and maybe too sensitive for my own good, and why I feel guilty if I'm not feeling pain, for the pain reassures me that I'm not making it up.

  • I got the "chronic somatization disorder" diagnosis when I shouldn't have, and without meeting the criteria for it at all (which included a long history of unresolved medical complaints starting before age 30 - when they didn't actually see any of my medical records from that period and there was no evidence at all for a long history). It effectively made it impossible for me to get any medical investigations or treatment for at least five years, and I ended up having to see private specialists and getting their recommendations before I could be referred back to the NHS. Even now, I still get told "its normal" for any new thing that comes up - even when another doctor has said it isn't normal - like my extensor plantar reflexes that the NHS neuro documented as being normal before he had even checked them. When he did check, he looked obviously surprised but still said "within normal limits". That somatization diagnosis has basically given every single NHS doctor free licence to dismiss any symptom or test result and send me back to GP, or worse still, to make a decision that there is nothing wrong without even seeing me. It got me to the point where I really doubted my self and was wondering if I was in fact making it all up. Finally a friend put me onto a really good specialist who took the time to review my complete file, take a really full history, do a full examination, and then conclude that it most definitely wasn't all in my head and I had a very real autoimmune disease.

    I still can't get the NHS to accept it though, as their interpretation of the same xrays is "within normal limits".

    "somatization" may seem like a fairly light kind of diagnosis, but it sure has some very serious consequences to future treatment for many years to come, and once its in your notes, its the fall-back for every single doctor who doesn't have the time or inclination to do more than the standard 10 minute NHS speed medicine consultation.

  • Hello BOB here

    Your script seems to have been entered away from the main entries regarding your condition, If you want to chat you can get me on the private pages located in the header on the top of the page. If that would help you I can understand you may not want to be on the main questions page.

    The condition that you suffer from is very real to the sufferer, if I can do anything to help I will assist on this Pain Concern site as I realize that you must feel very tired and distressed from this condition that you are suffering from

    All the best


  • I think this is an interesting question. Psycho somata form disorder is not malingering or swingng the lead. It is a complex illness that is a functional illness primarily due to psychological, neurological and immunological factors.

    Other elements are also co morbid with these. Rheumatism. Fibromyalgia back pain injury emotional abuse underlying major depressive illness.etc the list goes on.

    People with this diagnosis are not malingering.They have a real illness that causes symptoms of pain ,fatigue, depression, guilt at being unable to function. This illness is not chosen or welcomed. Respect, understanding, relief from pain worry commitments triggers that are known to cause flares, graded gentle exercise ease from financial strain. No stress allows the sufferer time to have the autonomy to cope with the illness.

    There is no cure.

    Pushing people who have this illness is cruel.It is real and it is not malingering.I was 35 when I I was diagnosed with this illness called fibromyalgia.I have lost a fortune financially because of it.I was cared for by incapacity benefits.

    I am now deemed fit for work by A.T.O.S who produced a complete work of fiction as evidence that I was well enough to work.I would like to also say that physical movements that I was made to do during the assesssment damaged pre-existing problems with my trapezium muscle and rotor cuff.I was hardly able to walk but made to hop onto a couch.This pushing caused deep mistrust and ongoing pain and was in my opinion abuse.

    Personally the physiotherapists have helped me and hindered me .Here is the problem...They can only help manage and sometimes relieve symptoms. When functionality is restored... this is the paradox. They try and send you to a full time job ,that will exacerbate your illness causing worried, stressed, confused overwhelmed and non functional people.Someone who is seemed to function then it is assumed that they can function. But they cant it is a functional disorder!

    Planting daffodils and gardening are my glory days.That alone makes me capable of work??? I am lucky I have people who love me.

    The sooner the A.T.O.S people who frankly should be at guantanomo bay realise this the better ,the better for our social entitlement and well being.

    I understand that they are trying to send what they assume to be the least broken toys in the toybox back to work.I suggest they focus on looking after the toys that should not be played around with.Leave them alone as they are capable of dolly steps with their illness.Mental health problems are another area of complete farce.Welfare reform stinks.They are breaking the already broken.The social cost will be far worse.

  • My mom was deemed to have psychological reasons for her very great pain which stems from the head and neck and causes hypersensitivity to even light touch and constant spasms - even though she'd also has spinal stenosis - by a team of so called 'experts' who met her for a very short period. If they knew my mom like we do, they would know that isn't true. She's not a complainer. In fact quite the opposite. It was extremely distressing for her and us to not be believed. Sometimes my mom's face looks like it's had a line drawn down the Middle of her face and her affected side goes red, whilst the unaffected side is normal. The hair on her affected side has gone curly and the pain would either cause the area to feel red hot, or very cold. I have witnessed her in the most incredible amounts of pain, unable to sit still and sweating profusely - these are not psychosomatic symptoms, but not many healthcare professional listen, or even want to. It seems some of them either don't care to take the time to dig deeper, or they have tunnel vision. A Professor had previously diagnosed her with Dystonia, but I think the Dystonia spasms are caused by nerve damage. It wasn't until recently when she became hypoxic through respiratory problems caused by undiagnosed COPD and heart failure and her pain seemed to become much less, that I decided to do a little research and discovered that pain can indeed become much less, even non-existent through hypoxia, as the pain receptors are in the oxygen starved brain, so that happening would make sense. The brain is where we experience pain. This confirmed to me that her pain isn't psychosomatic and needless to say when her hypoxia was treated, her pain returned. I also researched psychosomatic pain and discovered that only a very tiny percentage of people who have chronic pain, have a psychosomatic disorder. This begs the question as to why so many are being labelled as such, when statics prove that the vast majority are not mentally ill and should therefore be given the benefit of the doubt that their pain is very real.

  • I saw a new psychologist a few months ago, who suggested this might be the cause of my chronic pain. I don't have copies of my MRI scans, which show the skeletal damage to my spine, shoulder and ankle, following an assortment of injuries and assumed he hadn't bothered to read my notes.

    He clearly has no experience whatsoever, as he went on to say at least ten things that shouldn't be said to people with health issues, let alone depression. I left thinking he must've got his medical qualification from a "lucky bag".

    It's two months later, and I'm still waiting for a copy of the notes. Currently writing a complaint.

  • yes anytime I have told a doctor that I have chronic pain it seems that I have been suspect for psych problems. I humored the first doctor and agreed to go for a psychiatric evaluation and the psychiatrist confirmed that any and all depression, fatigue and pain was stemming from the physical disability and definitely not mental. so, volunteer for a psychiatry appointment would be my response.

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