depression through deformity

depression due to my severe muscular deformity i have a severe muscular deformity on my back where my muscle does not support my frame this leads to discomfort in sitting lying down bending down kneeling etc as the support muscles on my back are severely under developed my muscle sits in instead of and rounded it flat i feel no muscle from shoulders when i use my arms and this has been caused by both of my parents in different ways i have had enough of this life i have always known there is something wrong with my body but have never been able to get answers from my parents as they see nothing wrong with them and the doctor tells their is is nothing wrong u can be normal from thinnest piece of muscle upwards but i have been trying to improve my body and have seen no improvement what so ever i am fed up living in a body that i hate and can do nothing to improve

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  • Hi there,

    I can't imagine how it feels to live with a physical deformity. I don't even know what to say or how to console you. Besides have you tried therapy?

    Why does this deformity make you depressed, if you don't mind me asking? Doe sit cause you pain or is it primarily discomfort? Do you hate that it makes you look different, perhaps?

    Much love xx

  • i hate the discomfort of it but have been able to block it from affecting me so much over past few years but i am finding it difficult to sit down etc. in comfort it doesn't make me look much different or cause too much pain though their is some inflammation. It really is the discomfort of carrying out everyday tasks such as sitting down going to bed or bending for any reason. I will be going to see specialist in few weeks time for more tests in order to see what is causing the muscle to not sit normal. I am a qualified class room assistant and actively seeking work maybe if i focus my mind on other things it may prevent me from thinking to much about the negatives in life. but it is extremely annoying to live with. Getting back to my work may help

    "help myself through helping others" especially those with special needs.i have many close friends and spend time drinking socializing etc.so even tho i have this deficiency i am able to lead a normal enough life. Maybe i should b thankful for that even tho it annoying me that my muscles does not seem to be normal tho it is hard trying to accept i really need to look at positives in life

  • Yeah that's true. It's always easier to look at the negatives and become consumed. But life becomes lighter and more enjoyable whem you focus on the positives.

    i can't imgaine living in constant discomfort, it must become frustrating. But at least you are not in pain because that really owuld restrict your life, and at least you can still walk and work :). There are always positives, you just need to look for them and focus on keeping those in mind rather than the bad things. I find writing them down helps :).

    Good luck with seeing the specialist :) xx

  • That sounds really hard for you. I wonder whether your feeling that there is something wrong with your body can be helped by talking with someone who deals with psycho-somatic disorders - I am not suggesting the deformity is not real but that you can be helped to come to terms with your body the way it is and learn to use it to its best ability. You could ask your GP to refer you to the secondary mental health services who may be able to offer you suitable therapy or else advise you where to be referred on to.

    It would be a shame to let your feelings about your body interfere with your ability to live your life fully - we only get one life and it passes all too quickly.

    Suexx

  • anything may help it hard being different and feeling awkward carrying out daily tasks. i will be going to see a psychologist in a weeks time so will be able to discuss things then just hope to get the answers i need in few months time when i see the specialist.

  • Hi I was just wondering how and when you were diagnosed with this deformity? Wouldn't the original reports back you up? x

  • no deformity confirmed as of yet as i said in my previous post i will be able to know a lot more from my tests with specialist in few months time i have worked with children with special needs in the past so would not be as low as to say that i have a deformity if i didn't

  • Oh sorry. I thought you said you did have a deformity?

  • well maybe i could have worded it better but did give an explanation towards the end of my post saying that nothing has been confirmed as of yet. As well as stating that the doctor cannot see anything physically wrong he states that normal is the slightest piece of muscle. i am a broad bone structured person and the muscle which i do have on my back does not support all areas which makes it awkward to carryout various tasks. I should have better insight into the cause in a few months time whenever i get to discuss my case with the specialist i will keep you updated with that information if you require it.

  • Who are you seeing now to get a proper diagnosis of your deformity and the problems associated with it? When did you first feel there was something really wrong with your body? Tell me more so I can understand how you feel. Might not have an answer but we'll all try.

    Annie x

  • i am going to see the specialist in my local hospital for further testing i have only had creatine testing so far and my ck level has risen and stayed risen even a week after training but then lowered. My crp levels are still risen even after being told to give up on training for a while the training was not doing my back and shoulders much good anyway. My back has slight bit of muscle but it is not enough to support my frame altogether my arms are extremely loose with no support i feel awkward laying down due to my arms being loose it puts to much pressure on my arms and shoulder area laying on my stomach. and i just feel uncomfortable laying on my back when i sit down the muscles from shoulder to lower back hip area are so underdeveloped that it puts a strain on my back and shoulders i know this sounds hard to believe but it is the truth no doctor over 26 year period has noticed something wrong they all say im normal as i have some muscle. though i wouldn't class that as normal considering the muscle i do have is not enough for me to carryout everyday things in comfort such as sitting laying bending i get pain around my neck as well due to the muscle at back of my neck being underdeveloped. all of the muscle surrounding the back part of my body is all underdeveloped. i first noticed that their was something wrong when i was around 9-10 years old i was wearing a long sleeve top and noticed that my arms and back were almost level with each other and that the sleeves of the top were hanging on my bony shoulders . The first time i was with the doctors in relation to this was when i was around the age of 18 when i could take it upon myself to discuss situation with the doctors in the past few weeks is the first time that i have been referred to a muscle specialist for further examination. i have never heard of this deformity so i am finding it difficult to find answers especially of finding the correct answers i just hope that this specialist is able to provide me with the answers that i so badly need. I am worried about ever having children in the future as i am afraid that i could leave them with the same condition as myself. i would not want a kid to be put through what my parents unintentionally have put me through. i will find things a lot easier to understand whenever i get answers and will b able to c the risk of chance of ever passing this disorder on to others if i ever have children in the future i have no partner at present though.

  • Oh dear - seems this has dragged on for a long time. What did your parents say when you noticed the difference when you were younger? You say your parents unintentionally put you through this - do they have a similar condition? If the Specialist tells you there is nothing wrong what will you do? x

  • my parents both have slighter forms of the condition whatever it is. My mum and dad to this day still think that it is in my head and do not acknowledge that their is anything wrong with them or me. As theirs is slighter it does not cause them any discomfort but i know by looking at them that they are different to everyone else. If i do not receive the answers i require from the specialist i do not know what i will do there are others out their with various different ailments which go undiagnosed throughout their life's they are medical mysteries still does not mean that their is nothing wrong with them. but i hope i get the answers that i am looking for through the tests that will be carried out. by the specialist the condition is that rare that is the only reason that i can see for me not receiving the answers i need as their definitely a real problem so hopefully i get answers

  • Does it make you angry that your mum and dad don't acknowledge your deformity? It is always frustrating when something is real to us, but others won't believe it. You say others can't see the deformity but you feel they are looking - have they ever said anything to you about it? We need to get this sorted. Annie x

  • It does make me angry I feel that my parents are not own up ther own mistakes they think because the doctor's don't see it that it is not real because I feel awkward this makes me paranoid that others will notice it even though no one has said to me about in all my years of living and that the doctor's dont even notice it it still makes me feel paranoid that some one will one day notice it and I will have no explanation as to what caused it

  • Hi,

    I hope you manage to get answers and hopefully treatment that will help you, I'm a similar boat to you, but my problem is with my legs, the bones in my lower legs twist when they are supposed to be straight so have never really been able to walk properly in the way most people walk heal to toe, I over-pronate but my feet point outwards when my knees are still facing forwards, it took 2 years for an orthotic doctor to accept I was right all along, I'm now waiting to see an orthopaedic doctor for further investigation but I hope it doesn't take to long for you to be seen by the specialist and then hopefully it'll be sooner rather than later for when you get treatment.

    I've found this forum/community website thing, really good because even when I want to have a rant and rave, I don't get people telling me to shut up or grow up or to suck it up, like I would do on other sites and from friends and family, it's helped me a bit, so if I ever need to let something out, I don't get horrible with other people (I have problems controlling my emotions from a head injury I suffered a few years back), so on here I find it helps me, a lot, and I hope it helps you as well.

    I wish you all the best for your future, and come back here when ever you need to.

  • i will b seeing the rheumotolgist in 12 weeks hopefully i get some answers then sorry to hear about ur difficulties and sorry to hear that it took you around 2 years in order to get your answers yes this website has been really useful in order find out about and see that there are others out who are willing to provide a listening ear

  • I'm really sorry I didn't explain myself properly, I knew what was wrong with my legs, but the doctor said I was wrong and it wasn't anything to do with my bones in my legs it was just my flat feet, took them 2 years to finally accept I was right, and it was to do with the bones in my legs, I'm just glad they finally realised I was right. I hope you get the answers you need at your appointment and you don't end up like me appointment after appointment for years and getting no where, think between my past, my head and legs, it's all added up and that's why I've just got more and more depressed since the age of 12.

    You are right about the listening ear, people on here are really nice and friendly and help where they can, think that's why I find it a lot easier to voice my emotions because nobody will judge me, they will just try to help where and when they can.

  • you are alright no need to apoloigise so the doctor still made the wrong diagnosis for up to 2 years even after you attending appointment after appointment. That the same way i have been but hopefully in next few months i receive the diagnosis or even validation surrounding my deformity. I would say you be depressed having to deal with all things that has happened you. Yes there are a lot of nice people out there and a lot of them use this forum yes it good to be able to vent to those who listen and don't judge. Yep all supportive people who would go out of their way to help others to deal with their problems.

  • I've been under the orthotic department at my hospital for around 4 years now but it wasn't until 2 years ago I started going did I notice my shins twisting when I walked and was skating etc, so asked the doctor could that be the problem and he said something like no it's just your flat feet that's the problem, then earlier this year he finally said I was right all along, and it is my bones twisting when they aren't supposed to, think that's why I could jump 10ft straight on to concrete and be perfectly fine because the bones can disperse my weight by twisting and I would land safely, not saying I haven't had injuries because of that but only had 2 injuries through jumping on to concrete and both was stress fractures in my feet, well one in my foot and the other in my heal bone. I'll keep my fingers crossed for you getting a diagnosis and the treatment what ever that may be, but I hope it helps you in the future and to lead a better life. :)

  • Would there be a chance that you are suffering from Body Dysmorphia where the

    Person thinks their body is defective or unattractive in some way.

    If Drs say there is nothing wrong with you then maybe it's pschosomatic. Have

    A look online at this condition and it might help.

    Nobody has a perfect body that's what makes us unique, but if it's upsetting you

    Thus much , it sounds like it could be that you are too critical of yourself.

    Hannah.

  • the deformity causes me pain and discomfort doctors are not always right it is not in my head that's for sure I will not stop till I prove myself right I know my body better than any doctor

  • Ok.

  • With respect if the doctors see no deformity you may have psychological condition.

  • u would not b saying that if you had the body believe that

  • That's what I said but this person doesn't want any advice, unless

    It's agreeing with her. Ah well, surely if Drs. Say there is nothing wrong,

    Then trust the Drs. I would. X

  • I think it's sad not to take p-doh's complaint seriously. We all need our point of view validating before we can look at alternative points of view and if p-doh feels there is something wrong with her body that causes her pain then she FEELS pain. She needs someone to understand and take her own thoughts about the cause seriously. Most of us have had difficulty in getting health professionals to take us seriously over something or other, whether it's depression or something less tangible like fibromyalgia. I spent several years attempting to get my GP to take me seriously then researched and found what I believed was the answer - I was so relieved when a rheumatologist validated my thinking. It may be that p-doh knows what is wrong with her but has not yet found a specialist with similar understanding, especially if her problem is hard to explain and find evidence for. x

  • I have to agree with you on that Hannah. I reckon it is body dysmorphia as well. Especially saying the parents have it too but they are unaware of it or refuse to acknowledge it x

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