being in pains and depressed and then told by doc that it is all my head, like vicious cicle. it doesn't help! i want to get better! how to break through this circle? is not that GPs are meant for?
it's been for months, hand full with pills every single day, counselling, private physio (massages, exercises...) and the NHS one (talk, talk, talk...nothing else), recently- help-support group and swimming. i'm not getting better physically... mentally- barely coping...
at work capability assessment/procedure started, no money, one of kids (grown-up) broke up relationship.... it's hard.
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aye_may
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Hi there, its quite late for me and I'm a bit tired so will only reply briefly for now. I have had a lot of problems not being believed about pain and being treated very badly by the medical profession in this regard. I have had back pain neck pain for the past 12 years or so.It was constantly dismissed and one stupid doctor at pain management told me there was nothing wrong with me except my attitude and that if I wanted to end up in a wheelchair like the people down the corridor then I should go on the way I was. I found this incredibly insulting as I have fought this pain ever since it started. I did my own physio in the pool 3 times a week, I sought out and forked out for osteopaths, chiropractors, acupuncture ect paid for scans etc. How could it be in my mind and why would I want to spend money I haven't got in this way if it was all in my mind?
I give up on what the doctors say and just continue to treat it in the way that will keep the pain at the most manageable levels. I do not create too much external stress in my life, I do yoga, pilates and stretching as well as physio in the water, hydrotherapy of my own accord.
and pay for physiotherapy when it flares particularly badly, i can manage on one treatment every few months now if I am careful with the other stuff
You have my sympathies. I don't think for one minute you are making it up. They make people like us feel terrible when they say this. Just believe you have it, they may not be able to give it a name but you clearly have something. getting an official diagnosis will help with the work capablity assessment so you will have to push for a rheumy assessment I guess to get this. Hope this helps. Gemmalouise.
Sadly this seems to be an all too common experience if you look on the fibroaction website. I am not entirely convinced that I have fibromyalgia as it is very connected with what I do and putting any pressure on joints although my back is stiff all the time and has lost flexibility despite all MY interventions and my neck hurts when I look up and down (eg reading). I do feel better since my pyschiatrist actually said to me that joint pain is very painful which meant to me for the first time really that someone in the NHS had believed me. The only other person that believed me before this was the physio that I pay and I thought maybe she was just humouring me because I pay her to treat me! There seem to be some ridiculous theories going round that we can think ourselves out of pain by being told we are not in pain. I find this approach outrageous and I am sorry to all the people who may disagree with me; and also there is the theory that pain is the result of past emotional trauma. I am sick of hearing this argument and do not believe it applies to me and to me it invalidates me. Pain is real. Of course if I keep up my exercises and feel happier or distract myself the pain will be more manageable but that does not mean it will go away. I thought in my case because I had suffered from depression I was virtually dismissed and actually talked to in a bizarre and extreme manner. I actually took someone with me to one of the meetings and she just could not believe the attitude of what was being said. It was way out. However I had read about other people being treated the same anyway. I can see from the doctors point of view that if MRI shows what they think is "nothing much" that if they can't operate then they dismiss you but I was not even called back to discuss the results, I was just sent a letter saying I should be relieved now as the MRI was "essentially normal". I was not relieved and I do not believe that it is pyschosomatic. It started after I had a fall down a man hole cover, something which the specialist found amusing but I did not. It was not my fault. I have discussed all this elsewhere but actually it was negligence on the part of the physio treating me at the time for "normal" back pain. After this it became prolonged and permanent.
Do not let them fob you off. The fact that there is only limited stuff they can do though you will have to realise. There is not a "cure" for these things, only careful management and lifestyle changes. I still find that hard to believe but I am having to live with that now. When the pain is not flaring I am reasonably comfortable as long as I limit the kind of activities I do. Strangely enough though stretching and yoga and pilates and even walking I can do. Going shopping as in looking at clothes rails particularly if they are high is exhausting and makes me feel sick with pain, scraping out weeds, looking up and down as in reading if it is not at eye level very difficult and neck constantly sore. Back is constantly stiff and there is low level pain all the time even when i am very careful. I get very exhausted and if I start to do what others would consider "normal" activities like going to a meeting for an hour or so the pain gets worse presumably because I am sitting and not stretching out or moving.
Hope this helps. You need to believe in your pain and get them to believe it.
it's fascinating the strenght you have! i envy you. i still can't accept that i'm not the way i used to be... a year ago i was moving furniture, now- 15min walk is too much.
your story is very helpful, like assurance that i'm not making up things which is happening to me over and over again. with depression comes some kind of vulnerability and have experienced its been used against me. and again it's hard to fight back when you are low.
thenks again, no one so far had told me that much about leaving with pains as you
I have no idea why the medical profession and people in general feel they can treat depressed people in this way. It is like a double "punishment" for not being "up" enough to defend yourself. You are right, they see vulnerability and constantly react in a negative fashion to it. I know there is an epidemic of back pain in this country and that hospitals and
consultants are hard pressed but there is no excuse for this. You say I am strong. Actually I have serious insecurity issues. For years i felt very confused and kept on asking myself if I was making it up because it was never treated with the gravitas it deserves. It has been a hellish journey and still rankles with me and even though I come across as sure about it it is difficult to believe in it fully when other people are suggesting that it isn't really happening in the way I say it is. I have basically got to where I am by self action and not relying on being believed too much or trying to do what they suggest; but it still hurts and I actually still feel very vulnerable about it. For example it has been suggested I could work if I wanted to; I do not work and I have tried doing a full day at things or even half a day and ended up in agony. It is only me who has to live with that and then it can take me literally weeks and a lot of money to "recover" from that day because it will take a trip to the physio who I have no alternative but to pay for.that for I have found a combination of treatments, spinal manipulation and ultrasound that will start to ease the symptoms for me. I did always have problems with work I will admit from anxiety reasons, so not working could be seen as part of that but it isn't; its a seperate issue in that literally now I can end up in agony doing certain things i used to be able to do phsyically quite easily.
Physical pain adds another whole new dimension to depression and fighting the phsyical pain is always the first priority for me.
You may be lucky and find this is not long term for you. You do not say how it started. Not everyone is the same. Depending on the condition I would recommend a gentle exercise class or trying to move in warm water if you are lucky enough to have somewhere near you. Personally I was criticised for not taking pain killers. I did try them and they didn't help but then it was assumed that it could not be too bad! I find for me exercise works but each condition is different. When the joints flare that is very difficult as I just feel like not moving but I carry on with the exercise but don't include those joints which are flaring. They've got used to me at the place where I go not joining in some of the exercises; again it is only me who has to live with the consequences of trying at the wrong exercise for me
Are you female and if so have you had a hysterectomy? If so this can be the cause of a lot of lower back pain as they sever muscles holding the hips apart from the ribs causing compression in the lower back.
I only recently found this out...fortunately my GP is understanding and, having tried tramadol and high strength cocodamol for several months to no avail he now prescribes me oromorph liquid as I don't metabolise codeine.
Without this I cannot lift, bend or carry heavy objects without being in severe discomfort for several days afterwards.
Pain is in the 'brain' not the 'mind' and it is telling you to stop whatever makes it hurt.
You are joking - is it really true that after a hysterectomy back pain can increase! I am about to see a urologist who recommended the op last year and I chickened out but was considering having it done, now I am in two minds!! I agree, pain is pain whatever the reason for the experience.
one Specialist did. The others told me I was depressed because pain uses up serotonin so our mood lowers, which makes pain harder to cope with, which increases depression, which…….. . I am sorry pain management didn't help you. Mine was brilliant. I am still in pain but coping better, mainly, I think, because they believed me and took it seriously.
If your GP has really told you it is all in your head then you might try to change your GP as the one thing you don't need is someone not taking you seriously, if you feel pain then you are in pain and if you feel depressed then being told you are imagining it will simply increase your feelings of anger and helplessness which will lead to further depression.
You might tell your GP politely why you have changed, you could write a simple note or better still put feedback on the Patient Opinion website which is an excellent way of feeding back about different services and how you find them.
few weeks ago i felt quite alright and was about to change gp. now i'm down and really don't care. hopefully it will change in couple of weeks time as this week i started to take different antidepresant.
also my councellor is sending a letter to gp about my conditions and asking to do something about it. my hopes are that in few weeks time i will be better, the letter will be read and different gp will see me and at least something will change
Yes, hopefully it will, do let us know how you get on. Suexx
Hi I have had back pain for nearly 40 years after slipping and falling heavily on my cocyx. I cannot stand still without pain and if I am tired am in pain walking too. Doctors have ignored it for years and a physiotherapist dismissed my fall even though an x-ray I had to pay for with a chiropractor showed disc damage, and just gave me some exercises. I didn't do them! I have found that unless you go to the doctors bent double they dismiss back problems. Mine does limit my life quite a lot and stops me being able to do lots of jobs but it doesn't make a difference to the powers that be.
Pain is pain whether or not medical professionals believe in it or not. We know what we feel.
that was exactly what i thought just didn't have anyone to ask... because i've seen that they check you can you bent your back and that's it! diagnosed! and they don't care that my foot gets numb, pains in hips and along leg... three types of pills to manage pain 3 or 4 times a day and do exercises. it's been for months...
i was also told that because of depression i don't see myself improving. that's right i don't see. i see that numbness goes up on my leg. it comes and goes, but the numbed area gets bigger. And there are no changes in hips. 15min walk and i'm done I must sit. It's sad and funny that in supermarket there is no place where to sit and i've been in situations considering just getting down on the floor but the trolley 'rescued' me.
my low self esteem/depression makes me doubt my own feelings. other people can put on me pressure and i'm not strong enough to defend myself. few months ago i felt better and being under the pressure i went to work. in few weeks time i was back on sick leave.
Hiya, I am not a doctor but what you are describing sounds very much like sciatica which is definately painful.
I get it sometimes and it is exactly as you describe with the pins and needles going down the leg into the foot (I was told it was impossible it went into the foot but that is where I felt it too down the front of my foot) and numbness in the leg.
Absolutely not wishing to minimise your symptoms as this is a genuine condition and it is painful.But just want to say that in my experience the sciatica was greatly helped by the exercises, so do keep perservering with them systematically. I think painkillers can make you feel worse (this is all personal opinion by the way as we have to be careful not to offer medical advice) but if you possibly can I would focus more on the exercises element. They really do help and you should see some reduction after a few months but maybe you just need to carry on a little longer. There may be some arthritis in your hips. None of these things are minor as arthritis is painful. Just because it is fairly usual in the population does not make it easier to accept if/when you get it.
I can completely go along with the depression thing you are saying. When you are in pain, what are you supposed to feel? Optimistic about bopping around like you used to? All you can think about is the pain. But do perservere with the exercises and try Pilates, it is the best for that kind of problem. Give yourself time to recover or to get the problem to a manageable level. I don't know what sort of work you do but obviously pain drains you and dependent on the nature of your work some jobs will worsen a condition more than others. Keep us updated please.
i was told it's sciatica and something in lower back. exactly- something. and hip is wearing out as well. doesn't make feel good about such diagnose when you have all that depression stuff in your head...
it's been second week since i overcame fear to go to pool and been for swim like 6 times or so. i don't put any presure on myself, i swim, do stretching or just relax. as i already have experience of harming myself with too hard work now i'm really trying to take it easy. i don't see yet any difference but i have a hope.
just want to update my post. i had an MRI. i've got slipped disc which does not spresure nervs in my lower back, something not quite right in sacrum and also spine has shifted...
it was not in my head
Hi
I haven't seen you write before so if you are new welcome to the site where we support one another.
Sorry you have been feeling awful, it's a familiar story to me. I was told - well you can expect to have a few aches and pains as you get older - when I could barely get out of the chair and was emotionally exhausted by the effort of coping with chronic pain. I self-diagnosed fibromyalgia and saw a specialist and physios who say I also have arthritis, tendonitis and sciatica. At least having a diagnosis helps me to be taken more seriously. Have you seen anyone to get a diagnosis? I joined the local fibromyalgia support group and that really helped too. Those things help me to life myself out of depression when it beckons and I feel at the moment that I am in a positive frame of mind despite the pain.
The rest - work, money, kid's relationship problems must be stressful for you which won't be helping your mental or physical state. Do you have any support with them?
i've been here for some time, asked few questions, mostly reading other folks posts...
last year had been very hard... from ability to move furniture last summer to barely walking this summer is shocking, i haven't accepted it yet. before MRI i really thought that there is some way to get better i just can't see it yet or haven't met Dr Right yet. now i know there is not much one can do abt it which i see as not something positive.
money is problem, waiting on response abt benefits.
my daughter is my 'mummy' now. she looks after me and helps which is good for me but i don't feel great abt it as i can't help her... used to be other way round...
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