I can't tell you how overwhelmed I felt when I had my appointment with the psychiatrist who has informed me that the doctor at the hospital has me all wrong.
If you have been following you will know that over the last few months I have been challenged by my condition and different diagnosis has been formed. This some then got emailed to not only my orthopaedic surgeon but to my pain clinic doctor and the psychiatrist. So I made an appointment and the tears that flowed were of relief from being told it's not my head, my pain is real.
Because of this one doctor my relationships regarding my neck and back are now fractured, I feel patronised and misunderstood and to me they have made their minds up and refuse to acknowledge the difference in the MRI scans. Further more my first scan seems to not be on the systems now but I am seeing my GP tomorrow to explore this further and raise my concerns.
Basically I want to be re referred to a different hospital and to have a fresh look at my discs as not only do I have pain in my neck but the middle of my back is so painful.
I feel very let down by the team that was meant to be there to support me through this hell of a journey. I don't feel I can talk any further with them about new pains that are going on as they can't even come to the definitive conclusion about my neck.
I am low in mood but it is through not only my pain but who I trust in regards to my health. I have had enough, I have felt that not being here would be better for everyone and for myself I just want peace. Every day is the same, pain and fighting to get through, every night I lay my head down knowing that the next will cause me the same as that day. But I have made it this far with the painkillers and the support I have been given by friends and family, I will keep fighting as much as I can in the hope that one day will be a better day.
Thank you for reading this and I feel for each and every one of you and hope that you all one day have a better day
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Trulysad-76
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I'm sorry to hear you having to go through all that shot for so long and it's not good enough. I hope you've made an official complaint to PALS. You must never stop fighting for the help your entitled too and by all means change Docters or hospital to get the result you need. It makes me so angry when they try and fob you off because they can't be bothered. But just remember that there is a lot of really good doctor's and specialist out there and hopefully by changing to another hospital you will get to see them. X
I just read your post and had to take a few minutes to pick up the shattered pieces of my heart off the floor before I could type a response, because it truly broke over the hurt, despair, grief, and hopelessness that bled through your every word--your post was very poignant, very eloquent, and very moving, and I'm sure that it touched every other person who read it as much as it did me. Because even though none of us have walked in your shoes, most of us have walked in similar ones, beside you on the same path--so we can empathize with the heartbreak, the shame, the shock, and the sense of betrayal, rejection, abandonment and loss that almost hurts more than the physical pain (before you began this medical journey, did you ever in your wildest dreams picture that such severe physical pain was possible? And moreover, did you ever in your wildest dreams picture that such severe physical pain could be exceeded by emotional, spiritual, and psychological pain--and even worse, pain of that depth and type inflicted by the very professionals you put your whole hope and trust in to support and help you? THAT can be "the unkindest cut of all", as they say--and it's agonizing.
How I wish I had the words or the magic to take away your pain (on all levels), and to heal the hurt that sounds like it's haunting your every waking moment...sadly, though the desire is there, the ability is not, so much as I yearn to, i don't have any sure way to help you feel better:(. I just wanted to reach out to you and let you know you're not alone in this--in your illness, in your physical
pain, in your confusion and grief and hurt--and that all of us fellow travelers on our strange shared journey of strange shared medical maladies understand where you're coming from, and have faith in your ability to overcome and to heal, and believe in your reality 110%, and will do our very best to reflect that faith and belief back to you whenever you're feeling unable to believe in yourself (as sometimes happens despite our deepest convictions and best intentions, especially when the push-back/condemnation/disbelief/shaming coming from The Powers That Be is especially aggressive, resistant, inflexible, close-minded, and/or cold-hearted, as it all too often can be).
If you ever wish me to, I'd be more than happy to share the details of my own journey with you, if it will help you feel less isolated, alone, or ashamed--as I said, I've been there, so I know firsthand how painful, destructive, and disabling the experience can be, and I'd do anything to soften the blow for you if I can:):).
Sometimes one of the worst things about this experience is when "they" tell you (often enough that you come to say it to yourself) that you're the only one in the world like this--the only one so deluded, complicated, broken, stubborn, or "crazy" to actually think you're legitimately physically ill when you're feeling this awfully bad (and that no, you didn't ask for this to happen, create it "psychosomatically", "do it for the attention" , or any of that other nonsense), especially in the face of all this "medical proof" that that "couldn't possibly be so". (Sound familiar? See, I told you--been there, done that:):).
But here's the REAL truth of it: You are not alone. It's not your fault. You're doing your best. You are so brave and strong and perseverant and honest and good-hearted--and yes, legitimately, truthfully, and truly physically ill, no matter what some (uninformed, close-minded, hard-hearted) medical "professionals" might tell you:):).
I just wanted you to know that:):). Blessings and best wishes to you:)
I honestly can't thank you enough for your comment. You are truly amazing and I can't thank you enough for being there and supporting me and making me feel I am not alone.
I would very much like to hear more of your journey and I am also there for you.
I am currently in the waiting room at the doctors waiting to be seen and asking if he/she will re-refer me to a different hospital.
I just don't understand, the mere fact these doctors made me my doubt my own sanity is shameful. And then to be told by the psychiatrist that I am not was so overwhelming. It made my husband doubt me as the nerve testing doctor told me I had to carry a letter with me expressing his concern that I have a functional mental health illness. It did hurt and still does, I felt as though I was being punished for having pain and numbness that IS there. He failed to look into the fact that I also have Raynaud's disease, he failed to recognise that I also have CFS. He failed to listen to me and then told me I didn't carers.
I can't make it up and down the stairs normally, I drop things and regularly cut and burn myself not due to self harm but due to the fact my hands seem to have a mind of their own.
I know this road I'm on is going to be a long hard road, one that's not going to go easily. I'm not looking forward to this road but I have no choice, the doctors in my team have made me feel I have to find new doctors to help me.
I have seen the GP who was happy to re-refer me but expressed that I might not get referred if it doesn't warrant it. I was told to let the pain clinic know myself so they could hand over if I was happy to.
I left in tears thinking how crazy I must of sounded and the fact that even if the GP agreed with me he couldn't contradict his colleagues.
I guess now I have to wait and see what comes of this and hope a new hospital will take me on x
Oh, no, you poor poor thing; the infamous "FMHI"....they threw THAT hoary old chestnut at you, did they? I am more sorry than I can say--"hurt" can't come close to expressing how deeply painful that label feels, can it? How I wish I could've shielded you from having to feel such trauma (because that's what it truly is, right?--traumatic beyond description), or better yet, spared you from having to experience it in the first place. It feels like "you're being punished for your pain and disability" because you ARE being punished for your pain and disability, and that is an experience beyond description too (but I can think of a few candidates off the top of my head to start, such as "appalling", "unprofessional", "shameful", "destructive", "narrow minded", "shocking", "discouraging", and "heartbreaking", and "wrong", "wrong", "WRONG"....just to begin with:):). I know how terribly terribly difficult it is to hold on to your sense of self and your trust in what your body/mind/spirit are telling you (a challenging task under any circumstances, but especially so when you're feeling so ill and misunderstood and abandoned and unprotected and directionless); it infuriates and devastates me that this team of "professionals" could fail to know this, that they could wound you so cruelly and carelessly---especially when it's so clear to anyone who has eyes and a heart that you're in an especially vulnerable and delicate state right now (alas, that's the problem right there, isn't it? Some of these professionals are particularly and peculiarly heartless; small wonder they trample roughshod all over yours, since they apparently have no connection whatsoever with their own). You are 110% correct---you HAVE been failed, by many people on many levels. And that's not only tragic, but unwarranted--you've done nothing wrong here, beyond the seemingly unpardonable sin of having an illness (or more likely, a group of illnesses) that are either rare, difficult to diagnose, showing up in an unusual presentation, or all of the above....AND THATS NOT YOUR FAULT. YOU HAVE NOTHING TO APOLOGIZE FOR, OR TO BE ASHAMED OF. It's your TEAM that should be ashamed, and that needs to apologize (profusely, and sincerely, and repeatedly...preferably bearing chocolates:):). I wish I could tell you that this knowledge alone will spare you of feeling the slings and arrows of their outrageous conduct ever again; that it will wake them up and inspire them to do better by you; that it could shield you from any further suffering as you continue forward on this oh-so-difficult journey towards an accurate diagnosis, effective treatment, and a path towards healing...but I know that's virtually impossible. And that's not due to any failing of your own--it's because you're being asked to achieve the impossible while enduring the intolerable (meaning, you're being asked to hold fast to faith in yourself, trust in a good outcome, and believe in the messages your body is giving you when virtually every voice outside of you has expressed the opposite message--and in a very loud, inconsistent, disrespectful, confusing, dismissive, hurtful, abusive manner. Who WOULDNT feel disoriented, doubtful, and despairing under such conditions? The pressure that puts you under is immeasurable, and it breaks my heart. The saddest part of this already tragic situation is that YOU are the sanest one amongst them; all these people who are trying to make you agree with their assertion that you're not physically ill are themselves displaying a form of mental illness, because they are asking you to deny the evidence of your own senses, your intimate knowledge of your own body and the way it usually works (and therefore, the ways it's not working properly right now) . If someone approached one of these doctors and told him to deny that the earth was round, he would (justifiably) call them crazy--for it WOULD be crazy for him to deny the evidence of his own senses and all the data that backs up the truth that no, the earth is actually NOT flat:):). And nothing will ever change that, either; if a million scientists tweeted that they think the earth is flat, that wouldn't make it so. If the angle from which we see the horizon makes it appear as though the earth is flat, that doesn't make it so. If a photographer took a hundred rolls of film of that horizon line that made it look like the earth was flat--and showed it to a thousand of his photographer friends, who all agree upon seeing the "evidence" that the earth is flat---that doesn't make it so. In the same way, the truth of the matter is that you are truly, legitimately, and undisputably physically ill--and no amount of misinformed doctors, misinterpreted tests, and/or misguided "diagnoses" will magically change that truth. (Please understand, I would be so delighted if a miracle happened and you were magically restored to health! But for the purposes of this particular conversation, I only mean to say that just because you call a dog a cat doesn't make it so, no matter how strenuously you defend it or how catlike the dog may appear from certain angles:):). In the same way, a gazillion of these doctors could express the opinion that your illness is psychological and not physical, but that will never change the fact that they are wrong, because your illness is/was/always has been a purely physical disorder. I know these words don't have the power to make these naysayers see the light, or to prevent you from ever doubting yourself again--but I sometimes find that if enough people who know the truth remind me often enough of what that truth is, I tend to believe in myself more often and abandon my faith in my judgement and my senses less often (and/or in the inevitable times when the aggressiveness and cruelty of their denial knocks me off my center, I'm able to find it again much more quickly, and usually with much less self-doubt, shame, and guilt). I'm praying these words do the same for you, as you endure this challenging day and others to come. Because you WILL get your diagnosis, and your effective treatment plan, and your supportive medical team---you HAVE to, because you are undoubtedly and legitimately physically ill (which means, SOME physical test out there HAS to pick up on that fact, and document it, and display the evidence of the organic imbalance/anomaly/disorder). It might take time (and seemingly more strength and courage than you think you have), but I have total confidence that this newer, better, more supportive and helpful set of circumstances WILL unfold in your life, and that all the horror, hurt, and trauma of what's happening now will be in your rear view mirror:):). Until then, my best advice is to keep things really really simple, and to be really really gentle with yourself. Focus on getting through this ten seconds at a time; on reminding yourself how brave and strong a spirit you are, for having had the courage to undertake such a challenging experience in the first place (meaning, to not only come down with a severe physical illness, but to have it be one that's rare or unusual enough that it can't be easily diagnosed/treated, and therefore one that will bring you a lot more pain/humiliation/shame than compassion/support/assistance in our current healthcare system). I wholeheartedly believe that enlightened, wise, and heart-centered souls like you are actually doing the planet a tremendous service, at great personal cost--through presenting yourself to the medical community with an unusual/rare/difficult to diagnose illness (something that usually causes them to reach for whatever helps them feel "sure", "right", "knowledgeable", "wise", etc.--because in modern medicine, "I don't know" is virtually taboo--which all too often translates into labeling the patient's illness as "functional" and the patient as "deluded/in denial") that will force them to re-evaluate everything they think they know, and ideally, to abandon previously held judgements, limitations, arrogance, and separation for a more flexible, open-minded, compassionate, and connected relationship with patients and their concerns. As you know through firsthand experience, few tasks are more painful, overwhelming, or difficult. How brave you are to volunteer to undergo such deep suffering, for the benefit of other patients like you (and the doctors who need to learn how to do and be better). So my best advice is this: As you continue on this journey towards diagnosis and treatment, try not to buy into the negative labels being thrown at you ("a burden", "mentally and not physically ill", "in denial", etc.), as though THEY were doing YOU a favor by deigning to see you (something YOU'RE paying THEM for! How ridiculous is it that patients have to pay not only financially but spiritually and emotionally, just to be abused and abandoned!); in actuality, you are an enlightened being, an advanced soul, a missionary braving the wilderness for the benefit of others. If that's not amazing and admirable, I don't know what is:) So no matter what happens today (though I'm praying it's all good!:):), know this truth in your heart: YOU are giving THEM the gift and doing THEM the favor; YOU are giving THEM the benefit of your wisdom and expertise; YOU are giving THEM an opportunity for growth and self-improvement--not the other way around :) Whether they acknowledge this truth or appreciate this gift is not your job or concern; your only job is to have faith in your right to be believed, to be treated with dignity and respect, and to receive help and support when you need it/ask for it/pay for it--and to keep on keeping on until you receive it:) . If they fail to demonstrate this, that's not your fault--all that's happened is that the gift you brought them has been left unopened. Their loss. That doesn't mean your gift wasn't valuable or sincerely offered or appropriate, or that you're to blame for their failure to properly acknowledge and appreciate the gift. (And as we said before, your gift is an INCREDIBLE one, no doubt about that--any medical professional in their right mind would know they were blessed beyond measure to be presented with such a rare and valuable gift:). So if they prove to you that they ARENT in their right mind (as so many have done in your experience, sadly), just take up your gift and walk out the door with your head held high, secure in the knowledge that they missed out on something incredible--and search for another doctor who CAN and DOES appreciate your gift and its value :) You deserve all the honor, appreciation, and respect in the world for your courage, selflessness, and kindness. Always remember that :) I'll be in touch later to share some of the personal details you asked me about; I just wanted to give you a cyber hug this morning the moment I first saw your post, to let you know we believe in you, that you are deeply cared for, and that you have a ton of support out here in Rare Diseases Land:) Thank you so very much for your service, and for the inspiration of your example--handling such pain and trauma with such dignity and bravery:):). You're amazing:)
Look up CRPS. Also the doctor can't refuse to do any referrals its up to the specialist to accept you so make sure the gp writes the correct information on referrals. If no joy then call patient services l had to and they called the practice manager to inform them of this. I can't write much but l was told it was all in my head meanwhile crps spreading and its a disease of the brain and central nervous system so thanks to the NHS ignorance and wrong assumptions regarding mental health my body is failing and no cure or relief. I was even left walking on fractures after dislocating my ankle when nerves didn't lift my foot up, anyway supposed to get surgery but a different ortho the next day decided get me put in cast n had me walking on 3 displaced unstable fractures as didn't think surgery good idea due to my mental health disorder somatisation??? He didn't even report my injuries just one wee fracture (he went to Australia 4 weeks later) so physio wrote l had significant mental health issues as she thinks her ankle was dislocated and it wasn't so they were making me do physio on all fractures too?? I've got all my records and AnE consultant stating dislocated n needed surgery also all the xrays too but still dismissed by another 2 orthos told me all healed nothing wrong nhs fife so l went private n ortho looked at same scan 18 months later and arranged screws and plates be put in right leg bones and fix ankle joint in nhs Edinburgh last Dec but due to CRPS it's too risky n that's not the worst thing lve been put through. I'm a qualified sports development officer even though l can hardly walk nevermind work the past 12 years, l have all my hosp records and gp notes and it's horrific what gets written about you and the negligence just because they think you are mentally ill, God help anyone who actually does have a mental health problem as discrimination l suffered and the abuse of your basic human rights are ripe in nhs Fife it's beyond comprehension. I've been seen by a psychologist who yet again reported no mental disorders and her and other psychologists n psychiatrists over the past 12 years all agreed l didn't have somatisation disorder, she couldn't justify seeing me anymore as l am so determined and resilient but deteriorating very quickly and involved her management to write to my new GP that investigations needed to be done and referrals due to me being dismissed for years due to wrong assumptions regarding my mental health. I saw a rheumatologist for the first time May this year and l have had CRPS since a car crash l was in back in 2001. It's too late n progressed to internal organs etc they just fill you with drugs to try fix my crumbling bones, moviprep as bowels don't work and 27 other kinds of meds that don't even touch the pain. Even after psychologists reports the pain team who l last seen 9 years ago who did nothing to help back then either have still refused to see me, 7 referrals to pain specialists and people l haven't even met wrote back to the gp saying they now wanted me to be assessed by a psychiatrist for Munchausen's??????? Needless to say l was informed not needed and psychology boss wrote saying l don't need to see a psychiatrist, l need to see specialists as l am seriously ill and more disabled than when she saw me even 8 months ago. So..... Yes l have a diploma in anatomy and physiology and physio etc so this will all be going public and lawyers involved too. I can only pray that l'm able to do it as my sister is typing this for me. In my records it has written and l was also told l have no right ovary or tubes after a laparoscopy done in 2005 and then no left ovary in 2008 after another laparoscopy both times were done due to severe abdominal pain and bowels not working. So l couldnt have kids l was 33 then. Due to severe bleeding l saw a gynae 3 months ago and she couldn't understand how solid masses were found and complex cysts on scan when l had no ovaries so sent me for mri.....l got results last month and guess what.... I have had both ovaries all this time but need a hysterectomy. I was so shocked l kept asking them to check correct name date of birth over and over as couldn't believe NHS has robbed me of being a mum as well as everything else. Yet surgery on hold due to the severity of my CRPS anesthesatists and neurologists making that decision. It's weird as been told all my symptoms in my head for 12 years but never saw a neurologist until 3 weeks ago. Even last year my foot had no pulse and blue/black ice cold and my old GP just sent me home n wrote l was malingering on notes??? Anyway..... Don't give up, where there is life there is hope! God Bless, Deb.
Thank you so much I will update once I've seen the GP and I did go through PALS and that's when the pain clinic doctor, the nerve testing one and the orthopaedic surgeon decided to form there own opinion and decided it was a mental health issue not physical. This I now know for a fact isn't the case and the mere fact they made me doubt myself has made quite angry. But I have to fight for myself as something isn't right and it seems to be progressing down my back x
Thank you so so much for your reply. I am off to see the GP this morning in the hope that they will think of transferring me. All I want is definitive answer as to why the 2 MRIs don't match and to talk about new pain that is going on as well. When a relationship becomes fractured between doctor and patient I feel there is no point in carrying on with them.
Hi I'm New to this site and reading about what's happened to you really struck a chord with me.I don't know what your history is as i have only read this blog.I have had a mri scan which showed I have damaged 3 discs in my lumber spine injured my neck pain down spine .I have sciatica in left leg and damaged both shoulders.Left one frozen and right one Swollen and very painful.I fell in a floorboard onto Copper Piping last year.Still having problems also having physio awaiting to see MSK Team .Also have to have a assessment for universal credit.I had to give my job up.Have you had a assessment or seen the MSK Team for treatment?????.When I see these Professionals I will make sure no one treats me as how you were treated.So thank you by reading your blog you have saved me from a lot of heartache. It sounds like you have started to turn things around good luck
Thank you very much for the comment you left. My only advise to you would be, trust in yourself. Believe in what your pain is telling you and go with it. Tell the MSK everything and I hope that you are treated with dignity and respect. I am sure you will be, my journey I think is rare but I do know through reading some comments on here I am not alone.
It only takes one doctor to think you are psychosomatic and then the rest of the team form the same opinion. So always be firm with what you are feeling and don't doubt yourself.
I wish you all the luck in the world I hope they manage to get a hold on your pain and help you to have a better quality of life x
Hi....I sympathise with your pain and have been in the same situation. In my experience the MSK team try to filter the treatments available so if you feel strongly you need to see consultant insist they refer you.
Thank you what is the MSK is that the pain clinic? Unfortunately I have been under a specialist who first said I needed surgery and now says I don't. He says my disc in my neck has repaired itself but I can't find any research that says the disc does that.
The pain at times take my breath a way and even on a good day simple tasks are so hard to perform. I am 41 years old and feel like I'm an 80 year old woman. Not to mention that the middle and bottom of my back has started to hurt as well. I feel like I'm a hypochondriac saying all of this, listing off parts that are in pain. When in actual fact all I want is for someone to take me seriously and realise I need help???? (I mean professionals) 😔🤔
Hi truly sad, it's apalling what has happened to you. You must feel so hurt, worried , let down by your trusted team of doctors!. I just hope you get the go ahead for your new referral and get answers to your pain worsening and happening in different places!. Fingers tightly crossed for you. Keep fighting and you will get there. X
Thank you so much Misty for your reply, I am currently waiting now on the NHS board to make a decision as to whether they will re-refer me. I wonder whether I will be re-referred but I am in so much pain. The weather isn't helping either, it's like it's getting in my bones. I have had blood tests done for RA but this time nothing x
Thank you for commenting, no I haven't tested for Lupus. Reason being is right now I feel that I'm being a hypochondriac so am just trying to deal with the pain.
The pain today has me practically bed ridden though and because it's a new pain I might have to go back to the GP x
I do feel for you, i have been working in a hospital and it is not uncommon that some healthcare practitioners would do these and abuse their vocation to earn more means. I hope you get to follow through with your plan and find a good team that will serve you better.
Thank you so much Toni, I know that you can not tar every specialist or normal GP with the same brush. It depends on the individual but unfortunately this particular individual made it his business to tell my whole team who in turn automatically believed him (which I am sure I would if told the same). He should of never had said anything in the first place, just spoke of the facts that presented themselves within his specialism.
This is a hard one for me as I have never had this sort of problem before and always have had total faith to anyone involved with my health before this. I do believe that the specialist will be learning a valuable lesson some how (I hope) as I won't give up without a fight. After all this is my health x
He broke the patient confidentiality that we, healthcare practitioners swore by and i believe you can sue the person for that legally and by him sending those e-mails containing information without your consent can actually serve as evidence.
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So no matter what happens today (though I'm praying it's all good!:):), know this truth in your heart: YOU are giving THEM the gift and doing THEM the favor; YOU are giving THEM the benefit of your wisdom and expertise; YOU are giving THEM an opportunity for growth and self-improvement--not the other way around :)
Axial Spa / Ankylosing Spondy diagnosis
so much pain and lack of sleep 
Today is a very bad day
ATOS Assessment next week.
Pains in the head? Someone help! :(
