Pain consultant tells me at pain clinic FIBRO is not real... its a made up name.

I went to see my pain clinic who made me drive miles just to be told what settings to have my tens machine on... alreasy had these settings on the tens so another wasted painful journey which resulted me stuck in bed the day after as had so much pain i could barely stand to get to the toilet. Cple of days later i get another aptmnt to go bak to pain clinic, the letter did not say why.. i went to the aptmnt with my friend and when arrived i was shown into the room to have 5 drs ( physotherapists, pyschotherapist, and pain dr amongst other professionals) this was really daunting as i wasnt expectin all these drs to be there as the aptmnt was to seee A dr not a whole room of 5... anyway while i was there the pain dr argued with me told me fibro is just a name some guy came up with and that the pain is all in my head and that i shud accept my pain move on and live with it... well id like to see these people who blatently have no respect for me or for whst i say to them. I was treated like a petulant child when im a 45 yr old woman. Ive had a tuff life and there was a lot of physical violence in my life as a child, he said children who live with violence or has had violence inflicted on them when children are mire likely have to live with chronic pain... ive never heard anything like the stuff he was saying to me... i was in tears in front of them i felt like a fake. Im really really down about all this now and i do not want to go bak to the pain clinic. He even tokd me that (because of breakdown in communication between me and health professions have broken down) he told me perhaps not to bother going to anymore apointments! Im shocked im in so much distress i do not know what to do or where to go now for help. I feel so alone and do not want to carry on. Drs and nurses have treated me with complete disrespect for the last 2 yrs.. since i got my diagnosis of fibro and carpell tunnel syndrome. I also av an ulcer in the duodenum and cysts on my ovaries and am constantly vomiting and painful ovulation every 10/12 days. I am also diagnosed with major depressive disorder and anxiety disorder. Please can anyone give me some advice on what to do because im hanging on for dear life so i can be aroud to look after my children.. i cant leave them 😒 xx

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  • Hello Chezbobs72

    Well there's a lot here to deal with but will try help you on a few questions.

    I don't know much about fibro butIt is real.

    Many people never get a diagnosis as to why they suffer chronic pain but...if you were an abused child this can often be the cause of pain as an adult.

    If you felt badly treated by pain consultant and the team then please put in a complaint. Speak with your own GP and he can advise you. No one should be spoken to in such a demeaning wway.

    Can you throw any light as to why they felt relationships had broken down??

    As to your periods. I was 36 and went through a terrible time. I was put n various pills to rgulate them and stop intense bleeding. Eventually almost 11 years later I moved to different Health board and was given a blood test. Simple and I had been going through the change. I would hope these days a blood test would be carried out a lot sooner.

    If you have carpal tunnel and it has been diagnosed you should be offered the op. It is very simple nd done under local anesthetic.Recovery time is around 6 weeks as long as you do as you are told by surgeon.

    I am not surprised you are depressed. Pain DR was partially right in saying there isn't really very much they can do for the pain. A lot of the help cmes from you taking care what you do and how much.

    Have you spoken with your GP about all this? He can prescribe anti depressants.

    x

  • Hi Paton,thankyou so much for your reply... ive suffered with depression for many years been on several different antidepressants had councilling and cbt and am back on the waiting list for more councilling. I told my dr that the gynaecologist was rufe to me and also bout the pain dr verbally arguing with me and i told him i felt i cannot go there anymore.. he didnt say anything about it he was more concerned about my depression as that is why i had arranged aptmnt with him. I think its me thats causing the breakdown between me and drs as i do get very aggitated very quickly as i struggle to trust these drs. I was diagnosed with fibro a few months after an operation where i had my uterus removed as it was stuck to interior abdominal wall with adhesions.. i was guven enemas as was constipated and had an accident durin the night where the nurse started to wash me back to front wiping faeces on my private area while avin a caphater in... ended up rushed into hospital 4 days after bein discharged with a terrible infection in the wound (they went in thru old c section scar) shortly after the pain had spread from my abdo to practically all over my body was then diagnosed wi fibro. I do not see the point of this diagnosis if drs do not believe its a real diagnosis. Who do you trust and who do you believe? Sorry for the rant but i feel totally trapped and alone. Im now takin venlaflaxine for anxiety n depression. Again thanks for your reply ☺ xx

  • Please don't apologise. You can say how you feel and no one here will judge you. Sounds horrendous infection - its no wonder you feel like you do.

    Trust works both ways. You have to trust the medical professional and they have to do the same to you.

    Once upon a time you could have counseling as long as you needed it. Now it has been cut back so hard - 6 sessions if you are lucky.

    If you want to chatter more..just send private message. Might help you having a stranger yet someone who cares and understands

    x

  • Fibromyalgia is real cannot believe the way you have been treated.I am a carer for mental health everyone deserves love and support not bullied by professionals.one day it will happen to them xxxπŸ˜”

  • Hello my friend

    I have been in a similar situation myself. The "Pain" doctor I saw said some really stupid things to me and said it was not possible for me to have pain at a score of 9 continually. Well tell my body that then.

    Like you I felt humiliated. I didn't seek further help for quite some time.

    He also told me that Fibro doesn't really exist and that I needed to see a Psychologist.

    I told him exactly what I thought of him! I said "so you want me to see a Psychologist because you think the pain is all in my head?!"

    He stuttered and spluttered for a bit and said something along the lines of "well it's not exactly like that". To be honest I'm not really sure what he said because I was already walking out of the door.

    Please please do not give up hope. You could complain about this doctor, but from what I've read from other people, complaining doesn't really get you anywhere.

    Please ask your GP for a referral to a different Pain Clinic at a different hospital.

    I waited well over a year to see the Pain Clinic at a different hospital and have found a wonderful consultant.

    Don't give up. Please. This illness is very real. I sit here in agony myself and am currently awaiting a scan.

    There is hope. Keep your chin up my friend. We are always here to talk to. Don't let this doctor get into your head. He is not worth your time.

    I do think that the same thing has happened to quite a few of our members but it does leave us feeling embarrassed. Well it has made me feel that way.

    Please let me know that you will make an appointment with your GP to see a different Pain Clinic. There is always hope. Sometimes we can't quite see the light at the end of the tunnel but it is there I promise you.

    Wishing you a very peaceful day.

    Lu xx

  • Thankyou lu.. i will try my hardest to stay positive... just avin a bit of a wobble i think today... im sorry to hear youve been thru simalar..it is embarrassin and it does bring u dwn, i just need to be stronger ☺ xx

  • It's not a case of being stronger my friend.

    We shouldn't be treated like this. I had quite a severe wobble myself recently. It's quite frightening at times.

    Just hang in there. It's great you have a good GP. Ask her to refer you to a different hospital. Mine is miles away and sometimes the appointments are a waste of time, but at last, after years and years of pleading for help with my back, the Consultant said last week she is arranging for me to have a scan.

    The pain gets me down so so much. I find being on the forum is a good distraction for me.

    Don't forget that you can visit our website fmauk.org and request a pack all about Fibro to be sent to your GP. She may find it useful.

    We are all here to support each other. Be kind to yourself and don't beat yourself up about someone being so nasty to you. It's not your fault.

    Lu xx

  • Dear Chezbobs I'm sorry to hear of your negative experience with this ignorant person. I too had a doctor acting like an angry parent to a petulant and stupid child. It made my blood boil. So I left the practise and the new GP's treat me as an intelligent adult. They've probed the FM diagnosis further and I probably have something else.

    Anyway, if you feel up to it then complain to PALS. But keep it simple, state what he said verbatim and ask that they: provide evidence to substantiate the assertions made in clinic.

    That will put the onus on them. All too often with the power disparity in the one on one situation of a clinic they try it on. Let them know you won't be treated like that.

    Good luck.

  • Thankyou for your lovely comments.. i do av the contact details for pals and i am seriously considering contactin them as i do not feel i am being tteated like a patient but classed as an awkwatd patient that is clearly suffering physically and emotionally. Every time i see a health profession (apart from my oen gp who is tryin so hard to help me, which i appreciate ten fold) i end up leavin aptmnts emotionally distressed which in turn impacts greatly on my mental health. Ive been very patient up until recently wen i do not seem to get anywhere with theses supposedly professional people.. i know there only human but so am i and i wud like to be treated as a human not summat theyv trod on lol xx

  • Being a reasonable and patient person, I was exactly as you describe and felt exactly as you do. Unfortunately, it never helped me and my minor health concerns mushroomed thanks to the persistent failures of supposed professionals.

    Now I'm more generous- So if they make my life difficult I return the favour. Let them have to answer for their actions.

    It won't change what happened and not much may come of it if you complain, but every little helps. It goes on the record, albeit in the sky, and next time they might think twice before spouting nonsense.

  • My heart goes out to you. Fibromyalgia is very real and throughout the 17 years I have had it, the treatments have increased and the medical knowledge has increased. If you get a chance search the web for " the Mayo clinic" it's a highly reputable hospital with three locations and world recognized experts in medicine. It's main location is in Rochester, Minnesota, USA. Many rely on the Mayo clinic for expert advice in all medical issues. I'm a woman of Faith and I truly trust everything this establishment offers . The quack is the Dr you saw , dahling. Psychologist go to school to help those get mental illness diagnosis. But on the flip side they are educated on the operations of the brain and if they lack scruples, a mind game they will play. Don't dwell on that meeting because all of them are wrong and intimidation was their ploy. I am adopted and have been since the age of six. I was horribly abused the first year of my life, and even though fibromyalgia may be my Cross to bear, God gave me a second chance at life and we all have a special purpose.. you're in the garden of glorious fibromyalgia flowers, and we all have our own beauty and we look after our fellow flowers ... You're in an awesome place and we are glad you're here!! Much love dahling!! πŸ˜˜πŸ€—πŸ˜‡πŸŒ·πŸŒ·πŸŒ»πŸŒ»πŸŒ»πŸŒΉπŸŒΉπŸ„πŸ„

  • What bully's bless you x

  • oh my goodness talk about insensitivity and lack of warmth and understanding. If its all in your head (then it is the same for loads of us) then it is still real to u. I don't believe for one minute its not real but surely if they think it is, then it still exists for u, and us and you still have to live with it all. If they believe they are right (obviously none of them have experienced this) then are they gonna help you deal with it day in and day out? Just cos they said its not real and all in your head doesn't then make it go away. It makes me mad that you are now left lost and no where to turn, so what do u do now. An acquaintance of mine who works as a health assistance or nurse said to me that its an illness for mad people and I said how does she know that so she replied "Well amongst the nurses we believe it is the people with mental problems who get it" I felt dismissed and fobbed off and I have been suffereing from depression for a long time (managed with anti depressants) but I am not mad and I still need to deal with this everyday - I think that some of health proffessionals need to have some respect and understanding for what we have to live with each day. Don't let them fob you off , don't be discounted like this, even if it means making a complaint. There are loads of us who struggle with the pain each and everyday and why should we be dismissed and ignored, it may be in our heads (I doubt it) but it is very real to us

  • Hi and welcome to this forum..... fibromyalgia must definitely be "real" or what are we all doing here?

    I was so sorry to read about your upsetting consultation.

    If this had happened to me then I think I would approach it in the following way;

    1) Do you know the name of the Doctor who treated you in this way? I would send him an information pack about fibromyalgia since he definitely needs to do a lot of learning!! If you look on the home page of the website fmauk.org towards the bottom of this page there is a section where you can request for a pack explaining about fibromyalgia to be sent anonymously.

    2) Most hospitals have patient feedback form s, and I suggest that you complete one... giving all the information you listed above.

    3) was it your own GP who sent you to the Pain clinic? I would make an appointment to see your doctor and explain your experience of the Pain clinic, maybe you could ask your friend who went with you could come along for moral support.

    4) how did the other doctors/health professionals react to what this doctor said and his treatment of you? Did they agree with him or did they make any other suggestions? How did your friend who accompanied you feel about what was said?

    Finally remember nobody deserves to be treated in this way, and hopefully by sharing your experience with us, it has helped you to unburden some of your distress. It is so hard to stay strong and positive when we are experiencing so much hidden pain, but I wish you well with whatever way you wish to deal with this. Take care.

  • Hi Chezbobs72 ,

    I am so angry and speechless at the way you have been treated.

    Where do these Consultants get the arrogance to speak to a patient like that and think it is ok? A patient who is in pain and suffering from Anxiety and Depression, needs understanding and reassurance, and a Treatment Plan put in place. A plan that is discussed with, and agreed by, The Patient.

    I am so glad that you have an understanding GP who is trying to help you.

    I would definitely write a letter of complaint to PALS. Don't go off at them, don't make it a long letter, but write along the lines of what help you expected to get from the appointment, and how you feel that you were spoken to in such a demeaning way, and how after being humiliated, you left without any help whatsoever as to how to treat the pain that your GP referred you to The Consultant for in the first place.

    Another way is to go onto the hospitals Website. Most hospitals now give you information about the different departments, and the Consultants that work in them. There is also a section where the patient can rate their experience of their consultation. If it's an active Website, they usually give an answer to both negative and positive posts.

    Whatever you choose to do, make sure that you're comfortable with your choice, as you don't need any more stress.

    In the meantime, work with your GP, and keep coming on here for support, we all understand how it is to live with Fibro.

    Remember 4.5 million known people in the UK alone live with a Fibro diagnoses, are we all delusional? I don't think so.

    The same Drs who say it's all in our heads, work for the NHS, who in turn have an online page of Medical Conditions on NHS Choices who recognise Fibro as an illness, and offer advice and treatment choices.

    Take care of yourself, and I hope you get some real help soon.

    Best Wishes.

    GP. 😊😊

  • Hi,

    I'm hardly ever on here these days, but just popped in today. I came across your post - and I just want to say, Fibromyalgia IS REAL. I suffer from it. It is NOT imagined. Fortunately, I have lovely GPs and a lovely Rheumatologist, who diagnosed this. I also have other conditions, including severe arthritis in places. I live daily with pain and fatigue. I also run a kind of rheumatic fever a lot of the time.

    What I want to say is, I so feel for you having to deal with complete tw*ts. They are absolute ignoramuses.

    I once had to see a female locum GP, as my favourites weren't in. Such a cow. She rolled her eyes when I said I had been diagnosed with Fibro and treated me as if I was an idiot. So that makes the other GPs and the Consultant Rheumy an idiot too then, in her eyes, as they believe it exists - and very much so.

    Do what you can to change who you see, as there are decent people out there - albeit rather rare, unfortunately. xx

  • Chezbobs72 ....If it's not real then why are millions being spent on research all over the UK? Why would they spend money and time if they knew it didn't exist? I thought these doctors were supposed to be clever people...obviously not. Also you asked 'who should you trust?'....well, I'm gonna tell you - YOU TRUST YOURSELF! Stop doubting yourself...they plant the seed of doubt in your head and, because as a child you were treated like your life meant nothing, that seed grows and you believe them over yourself! You are not that child anymore, don't allow them to belittle you, don't be scared of them stand up and tell. YOU ARE RIGHT AND THEY ARE WRONG. They are so thick they don't even realise the harm their ignorance causes.

  • My gosh u poor lady ! Really feel for you. It's awful u have been treated in this way. I'm fortunate that my doc in the pain clinic is kind and understanding. He did say that fibro is a real and recognised condition. I would have no idea where or who to complain to but surely u deserve better treatment than that . Hoping u find some help somewhere πŸ™‚

  • Can I just add that during the 1940s doctors told asthma and multiple sclerosis patients it was all in their heads. Let that sink in for a moment. You may want to share that nugget with anyone who tells you your fibro isn't real.

    Sleep well my lovelies. xx

  • What a terrible way to treat a patient, I am gobsmacked.

    Not only is this condition on the NHS website pages, I was actually told to look at the information from my rheumatologist.!

    Not only does the NHS believe in it, so does the DWP. Two government departments can't be wrong, can they?

    You have written a very informative account of your appointments and the way you have been treated. If you feel up to it then I would complain to PALS, it may not help you except perhaps to make you feel better, but it could stop someone else being spoken to in that way.

    Xx

  • Hi Chezbobs72

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so genuinely sorry to read of the arrogant and nonchalant way in which you are treated. The NHS recognises Fibro as a very real medical condition and I have pasted you a link below to the NHS Choices cache on this:

    nhs.uk/Conditions/Fibromyal...

    The amalgamation of bringing these 5 so called medical professionals into one room for your appointment sounds unwarranted and intimidating. If I were you I would personally make a formal complaint to NHS England or through PALS.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • I hope you punched him on the nose. I have had a similar thing with a GP, I went to see him, never seen him before, he said that, "most Doctors don't believe that it is real and that I am one of them, thank you for coming good bye". needless to say I never went back to see him again. I did hear that he retired and approximately 3 months later had a stroke.

  • Karma strikes again maybe? his negative actions towards you = negative things coming back to him.

    it's very real for all of us. if it's not real then we are all deluded. and i don't think it's quite possible for THAT many people to be deluded.

  • Was that all in his head?

  • Id just like to say thankyou to all of you for answering my post and makin me feel a 100% beta about things... i see im not the only person whos been treated like a piece of cr*p which is just wrong. I cannot believe or comprehend what that dr sed to you Catherine... absolutely disgusting. I hope you punched him on the nose lol, what a complete and utter arse hole!! Do these people not realise the damage they do to there "patients" im gobsmacked! And yes you are alllll right in what your telling me and i am so grateful ive found some where were i can get stuff like this of my chest and to realise im not alone in all of this. So thankyou everyone for takin time out to tell me your experiences and the emotional support you av all shown me. I now know there are decent nice people out there n not all nasty disrespectful professionals who think they av the right to destroy any confidence or self esteem u mite av left. Uve all made me feel more positive about things so again thankyou guys and gentles hugs to you all ☺ xxxxx

  • you are welcome, we are all understanding and helpful cos we also experience this real illness everyday so its a great place to get help and support, we probably know more than the GPs. all the best xx

  • Rubish will be just that.... We have your back here!! No worries, and blessings of better GPs and rheumatologist hopefully find you in this journey. Rheumatologist is the way I received my diagnosis.. take care dahling πŸ˜˜πŸ˜ŠπŸ€—πŸŒ·πŸŒ·πŸŒ·xxxx

  • Oh my goodness! I'm so totally outraged for you chezbobs72. 😑I've never heard of such truly awful people in my life. Call themselves doctors/ health professionals. They clearly need to think about a change of career.

    I wish I could change things for you my lovie. You certainly have all of my hopes that you will carry on. I'm sending lots of love to you xx

  • Thankyou Fallabella, your right there dont kbow how they have the audacity to call themselves health proffesionals... there was nothing proffesional about that apointment... it just led to more dissapointment and anguish. Ive written a review on there nhs website... it probably wont get me anywhere but at least ive got it of my chest 😊 again thankyou all for your kind words of support it is much appreciated 😊 xxxxx

  • Reading your post was shocking; how can these people behave in that way? 😠 I feel so sad that you have had to deal with this. But I'm loving the responses here; it is a relief to know that you, and all of us, have some great support and people who beieve in you; along with your Gp for practical suport. I hope you soon feel more comfortable and keep finding the strength to manage things. Take care. Ali. Xx

  • Hello Chezbobs72 ....... I was also referred to Pain Management by my GP and went through a very thorough medical history (quite lengthy!!) with a lovely lady....she left and the Physio came in who really put me through the mill, so much so that I was crying and my daughter came to my defence.....Talk about unkind....her comment was "Well I need to assess her thoroughly to see what she can do"......The outcome was that they said they couldn't treat me until I had confronted the demons that caused my depression!!! I am 70 years old and had a traumatic childhood and first marriage....I also mentioned stupidly that I found a glass of wine in the evenings relaxed me and helped me sleep (I am not an alcoholic!!!) so I was referred to a Psychiatrist who was totally baffled as to why I had been referred to her because of my drinking!!!! She was terrific and yes, we did talk about my life but as she said "I also enjoy a glass of wine in the evenings and if I lived with Fibro I would probably have more".....

    I personally feel that with any medical problem nowadays if you mention smoking/drinking/and being overweight they find an excuse not to treat you.....

    Life sucks at times....BUT we are all here and in it together....Gentle hugs xxxx

  • Agree. Doctors try to blame one of those things rather than actually treat you for a very real problem. it's either, stop smoking, lose some weight, stop drinking... well i've lost weight. i've cut down my smoking so much i hardly could call myself a smoker now and i do not drink a drop of alcohol. so when i reach my target of weight loss and completely give up smoking what are they going to blame then eh? the weather? lol

  • I had a scan today and the radiographer didn't have the courtesy to even say hello. She just told me to come in. Manners cost nothing and my patience is wearing thin when NHS staff cry from the rooftops about cuts. Their behaviour to patients does nothing to serve their cause.

    That said I have had good experiences too, staff just seem to be either v.good or v.bad with little in between. At another scan, on a sunday, the woman was the sweetest person ever.

  • Hello. I'm new here but absolutely have to respond. I could cry for you. The way you were treated was horrifying and utterly disgusting. Just shocking. And coming from health professionals it's beyond the pale. I SO understand and empathize. Your life sounds quite similar to mine. Fibromyalgia is most definitely a recognised condition. I've had it for years and now one of my daughter's has it too on top of other things. Like you I have multiple conditions. Also I suffer from a depressive anxiety illness. Sadly even in 2017 we are treated as second class. It's.. .oh she is a nutter or hypochondriac. It's all in her head...unbelievable. I wish they could all have it for just one week. What a horrible shock they would get. It's typical fibro to exert yourself one day and pay for it the next. It's a very difficult life. Please put all thought of those cruel and ignorant people out of your head. There is nothing they can offer anyway. Iv had the patronising disbelief too. Being treated like a naughty child. You didn't deserve it. Nowadays I just try to look after myself as I know my body best. Please keep posting. Maybe a group of us fibro sufferers should go on tv!! I care about you and other people here will too please keep in touch. I'm trying to treat pain myself at the moment. But just had to respond. God bless you.

  • Thankyou Dolly, im so sorry to hear your daughter has just been diagnosed with fibro πŸ˜” I hope shes getting the correct care that she needs as its an awful disease... Im stuck in bed at the moment as im in sooo much pain I can barley get out of my bed, id love for that consultant to step in my shoes for just 1 wk... he would jump out the bloody window not cos of the pain or the depression and the vomiting and the chronic fatigue but because hed be so embarressed to have sed and dun to me and probably other people.. i cant be the only one surley.. hed soon change his mind and his ways about fibro. I hate it i hate my life but ill b damned if im going to let him ruin my life with his hurtful comments... ive had a reply from nhs imforming me thst there very concerned and advised me to ring pals which they have given me the number for. So at least some one from the NHS supports me. And of course the support from this forum as helped an awful lot. I was sceptical about joining one but I am so glad i did. You guys r the best 😊 ps feeling bit more content after reading your posts. Again thankyou you luvly people. Gentle hugs to u all xxxxx

  • Oh dear.

    Doctors seem to say if they don't know what's going on. You would think they would try even more or better research. Instead it's in your head.

    Too easy.

  • I am very sorry to hear about your experience, it sounds like such a similar experience to those that I have had. Unfortunately, when people can't -see- an illness it becomes psychosomatic, something that is all in our heads. Although I understand that fibromyalgia is made worse by trauma/depression and other illnesses, that doesn't change the fact that you are in absolute agony on a day to day basis.

    I am tired of people telling me this same thing over and over "you just need therapy and then your symptoms will go away." It's so humiliating to hear that others think I am 'thinking' myself into not being able to move or function most of the time.

    It is such a shame that you have waited and also put so much time into attending these appointments, only to be degraded by people that should be helping you! I would contact PALS. I have had to do this on several occasions and immediately received responses from the hospital with an apology. It doesn't change the fact that you were treated in such a way, but, it helps to have someone actually listen.

    I am not so sure about your ovarian problems but they sound horrible! Could you get an appointment to see a specialist? I have ovarian cysts as well and they are dreadful when they get enlarged, however, the only treatment they have offered me is hormonal. I know that evening primrose oil helps a lot of women with these pains but I don't know if this would be at all helpful to you.

    Sorry again for your awful experience. Hang in there, and know what you are experiencing is absolutely real.

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