i am in same boat but have literally no way of changing things i have a muscle deformity which i cannot get answers to from anywhere hospital etc. my muscles on my back and shoulders are severely underdeveloped this affects my posture my and my arms are extremely loose i have tried going to the gym for strengthening and this has not helped it is so awkward and i am being told by doctors etc. that i am normal even tho i am obviously not normal there is some form of mutation in my genes which has caused this i have had same problem my entire life i am 26 now and i am finding it extremely irritating and c no reason to keep putting myself through a life which i am not happy with and have no way of changing it i have tried to accept that i am deformed but do not want to live this life anymore as there is no way of improving this life

15 Replies

  • Having a long term health problem is debilitating, and that in itself can cause someone to feel depressed. Lots of people here will be able to empathise with your situation. When you say the doctors think you are 'normal', do you mean they are not acknowledging your difficulties, or that they are saying what you have is not uncommon? You are always within your rights to seek a second opinion if you're not happy with any medical advice you've been given.

  • the condition is so rare an the doctors have not got the correct gene testing mechanisms in order to find out what has caused it. i have only been provided with creatine tests so far which were ck level high a week after training but have lowered since and my crp level is still high. i got a referral yesterday to the muscle specialist and will be seeing them in few months time for further testing. So hopefully something shows up then the doctor does not seem to be acknowledging the difficulties which i have in life as they do not fully understand the situation it is one of these things that u need to b placed in the situation yourself in order to fully understand it. the doctor said to me yesterday that i have enough muscle that cant be correct because if i had enough wouldn't i be like everyone else and have enough muscle to support my frame then he said i am normal for me whatever that means. it is extremely irritating known that their is something wrong with my skeletal muscle system but not receiving any answers other than ones like these.

  • Is the deformity causing issues just with strength and mobility or does it make you feel that you stand out from everyone else because of how you look? Like the post below are the Doctors acknowledging your problems and trying to help? Tell us more so we can all see how we can help. Don't struggle on your own. We are all on here because we care.

    Annie x

  • it makes me feel like i standout as being different to everyone else i will go nowhere in only a t-shirt as i feel really awkward at minute i cant even sit in my friends house with their other friends around them as i feel that they are looking at me and noticing my differences even tho they aren't really noticeable visually.

  • Do you feel you have to cover your body so you feel relaxed or so that people can't see the real you?

  • I feel I have to cover up both of reasons u stated I don't what to show of my imperfections as others already know about various other disabilities that I have such as aspergers etc. This could be another reason as to y I dont hav the confidence to show my body in public

  • I feel I have to cover up both of reasons u stated I don't what to show of my imperfections as others already know about various other disabilities that I have such as aspergers etc. This could be another reason as to y I dont hav the confidence to show my body in public

  • Have you discussed with your parents that it makes you angry that they don't believe you? When you look at your body do you hate it or can you see any good? I hate my body sometimes because my legs are too short, my nose has no shape and I have a birthmark on my arm (which everyone always points out) - but then overall I realise I'm not that bad and sometimes I think I am quite attractive. I have uneven hips which causes one of my legs to be slightly longer than the other, but only I notice it (it was picked up at ballet class). My list of imperfections can go on and on. Do you think something happened when you were younger, and first noticed this problem, which made your confidence start to erode? Has anyone discussed body dysmorphic disorder with you?

  • I have discussed body dymorphia and it is not that i know how body feels it is definitely a real deformity I have many other imperfections but this is the one irritates me everyday due to some pain and a lot of discomfort if I sit on a seat with out a back rest the pain flares up in majority of positions I am In discomfort this is definitely a real deformity yes I am always saying to my parents how angry I am with them about how they left me I am fed up saying to them I can c that I have a good frame it just annoying that the muscle does not support it

  • Hi, I am re-reading you post and further comments and I have been thinking about what it must feel like for you when your parents refuse to believe you. That must be very distressing and make your feelings even more extreme as parents are the people we most need to be believed by. I do think you might write to your parents, telling them about what you feel is wrong with your body and why, how it affects the way you feel and your life in general - but more importantly tell them how you feel when they do not believe you. If they are able to give you love then they will want to understand and will respond positively to that, if they are unable to give love then at least you will understand that about them. That may reduce your anger towards them and enable you instead to feel sad about them. I know that won't solve your problem about your deformity but it will at least enable you to reduce some of your anger and let go of hoping they will understand. I do think some counselling could help you to come to terms with things somewhat but you do also need to find some medic who understands your deformity and validates it even if they do not know what is causing it. xx

  • i am fed up explaining to my parents about how i feel about my body and always being told to shut up or on some occasions even being physically attacked by my dad it makes me feel like crap it is extremely hard hearing them to tell me to shut as it them who has caused my life to be destroyed leaving me with an irrepairable deformity i sometimes hate my parents leaving me like and on some occasions i wish that i was never born. i am currently receiving counselling and it does help but on in the short term. i hope to receive answers at the rheumtologist in few months time and hopefully i receive some answers then as to what has caused but would accept validation of the deformity even if the cause cannot be found.

  • Well as long as you have explored body dysmorphia and it has been excluded then you know you need to find the answer somewhere else. It must be upsetting that no one believes you and I can't imagine how frustrating that is. What other imperfections do you have?

  • I mainly all my muscle structure which is messed I have square head apparently but that might just look square due to the shape of my body my back tho is key area of my imperfections all areas on the back half of my body I real upper back and shoulders lower back none of it matches my frame in order to support it

  • I wonder whether you are in a position to afford to see a physiotherapist privately? It might cost around £50 or so and they would have the time and skills to be able to look thoroughly at the problems with your back. They are also trained to understand what might be done to put the situation right. If THEY say there is nothing wrong then however you feel you may have to face the idea that there is a psychological component - I wonder whether that idea is distressing for you, it may be that it triggers feelings about how you feel about your body not having been accepted as reality by your parents...

  • would not have funds for that as i have no work maybe the rheumtologist may provide me with a referral i dont see that their is a lot i will be able to improve this body is totally destroyed from my view point but im sure anything can help so i can get it confirmed that the point that is getting down more than anything is that there is not a lot which b down to improve this body is totally destroyed i dont how the doctor can tell me that when it is so clear especially viewing me laid flat my body has grown into a shape which is irrepairable

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